Liv's Journey...

The Case FOR iPads Being a Miracle Device for Children with Autism

2011-04-02T00:28:00.003-04:00

Recently, Sullivan over at LB/RB put my eyes on a Wired article titled iPads Are Not a Miracle for Children With Autism. The author, Daniel Donahoo made a well thought out and reasoned argument on how the iPad is not a panacea for autistic kids. His discussion is valid and I agreed with most of the points he said...and I still think say he's an asshole and I disagree with the premise that iPads are not a miracle device for children with autism. I should just end it that way and REALLY piss him off, huh?

I'll start by reiterating some of his points, which I guess he 'just' thinks are neet-o and not necessarily a miracle:

The device is providing the cheapest augmentative and alternative communication (AAC) tools that professionals and parents have seen
Some philanthropic organizations, like golfer Adam Scott’s Foundation, have been providing iPad to families loaded with a suite of apps recommended for children with autism.
Online there have been a large number of websites set up to review and assess “apps for autism.” There are an increasing number of YouTube videos showing children with autism and other disabilities making developmental progress using the iPad
Initial research using iPod Touches with primary school students, especially those with identified special needs, looks promising..
The anecdotal evidence that children with autism benefit from engaging with the iPad is high
Parents have flocked to the device and governments and other organizations that support children with a disability have been hit hard with requests for funding and to support the purchase of the device

Okay, they don't add up to a miracle. But for something out for less than two years, the paradigm shift of how devices will fit in the autism/special needs world is dramatic to say the least.

Let's look at some of your other statements too:

Of course, :the hype: has had the unintended impact of being quite a difficult experience for families of children with autism who can’t afford the device. The feeling that there may be something out there that can support their child’s development, but that they can’t access, is a terrible situation for a parent to be in.

People who can't afford a $500 device can't afford a $5000 one either. Schools will fight tooth and nail not to spend that money in the US, even for essential AAC devices. As with almost everything in an autistic child's life, there is ALWAYS something out there that would support their development that they cannot have access to because of money. The iPad will help change the economies of this situation.

You see, it is called Autism Spectrum Disorder (ASD) because the impact it has on a child’s development spans the breadth of development. No two children can be supported in exactly the same way. Parents and professionals understand this, and because they do they also understand that for some children with autism it might not be the right time to introduce an iPad.

That's kinda the point though, the iPad is a single device that has the potential to be utilized across a wide range of issues and ages on the spectrum. No two children need to be supported in the same way. Schools can take this single platform and use it to help a teenager with social issues one day; and turn it around to be an AAC device for a grammar school child the next.

I have been working with an organization undertaking an iPad trial to see how it can be used by early childhood intervention professionals. I have worked with non-government and government agencies that have supported children and adults with a disability for more than 10 years and it is exciting to see the potential of the iPad. But, the potential of the iPad is not achieved by the iPad alone, nor by simply placing it in the hands of a child with autism. The potential of the device is realized by the way professionals like speech pathologists, educators, occupational therapists and early childhood development professionals apply their skills and knowledge to use the iPad to effectively support the development of children. The potential is realized by engaged parents working with those professionals to explore how the device best meets the individual needs of their child.

Here's where the 'magic' can truly begin. Here is a platform that is common across the world; that is interconnected to the world; and that most professionals will be familiar, if not intimate with. The infrastructure of technical professionals and systems are there; programmers, sales people, research, schools can and already are developing, testing, selling...making money and getting results. Cloud computing can allow access to literally everything related to the device, the users and indeed the child for everyone to share. All this in an intuitive, completely portable, relatively (and soon to be even more) inexpensive, wherever you are device. COMEON DAN, this may not be a miracle, but it IS a 'wheel', or at least, a why-don't-we-attach-two-together- with- a-pole-and-put-stuff-on-top-of-it extension of the wheel. It's not the device, but the infrastructure behind it that enables the iPad to be the miracle. But now, that infrastructure just got one whole of hell lot bigger!

Of professionals I have spoken to who are using touch technology in their work, their main concern for children with autism is that the device is used excessively for what they refer to as “stim” (stimulation). Screen-based technology, for all of us, has the ability to stimulate a range of senses; for children with autism this is also the case and it can be heightened. An iPad may engage a child with autism, and help calm them down, but that does not necessarily mean it is providing any developmental opportunity. It is being used like so many of us use our devices from time to time — as a babysitter.

I agree wholeheartedly that we have to be careful how the tool is utilized. But just remember that for many kids on the spectrum, there IS nothing that they stim on that would be considered socially acceptable. Why should typical people be allowed to stim by throwing virtual creatures at blocks, and yet we should look upon an autistic stimming on the exact same machine as not acceptable or 'normal'? Remember too that for some autistic kids, that the iPad may be one of the few ways that they CAN calm down, or make it through a stressful social environment.

Dan, maybe I shouldn't have called you an asshole; you're obviously on the right team; you are working with the disability community to help make their lives better. Maybe you are too close to the technology side of it to realize that this is not just another group of people all abuzz over the latest gadget. It's that the disability community is finally part of a first wave of technology use. Yea, some will rush the iPad on their kids; but most of us fully understand the implications and pitfalls of hanging hopes on an idea like this.

I'll reiterate the most important statement you made:

It is your child, your family and the network that surrounds you that is the miracle.

Reminds me of that Verizon commercial from a few years ago. Where the person on the cell phone was surrounded by a network of technicians. Yes, the therapists, teachers and other professionals will always be there; but now we've gained a whole lot more people working behind the scenes for autistics.

Money...Meet Mouth

2011-03-26T11:30:00.002-04:00

For 6 months plus, I have been watching the progress of the phenomenon known as iPad: specifically, the wonderful way that it has fit almost hand and glove into the lives of many autistic children. I have plotted and schemed ways to push school systems toward using them more; I have looked into ways to win one, get one donated, or otherwise find a way to reduce the cost of getting one for Livie. After months of trying to move the technological mountain to my family; we have finally broken down and ordered one for Livie.

For those under a virtual rock, Apple makes the iPad, basically just a little bigger than a GPS device (wait, if you are under a virtual rock, you don't know GPS either). OK, for those still in the ENIAC era: a screen the size of the TV's in the 1950's, but about 499.4 pounds lighter; and as thick as a pulp fiction paperback. Apple announced it's releasing the iPad2 a few weeks ago with a few more bells and whistles. The real exciting thing for us was that Apple put together an 'iPad...Year One' video for the presentation, to show where the iPad has been utilized. One of the stories within this 6 minute video, is the impact that iPads have had on autistic kids. Watch the whole thing if you like, but the autism part begins at around 3:45:

http://www.youtube.com/watch?v=HpiVeC1Z3yI

I'm hoping I'm right to say that I can't underestimate the power of having Leo and Shannon in that video that (as Shannon herself put it) :"made Steve Jobs’ keynote audience of tech-heads reach for their hankies" in response to the impact a simple tool had on the lives of the autistic community in such a short time. It means those techies will go back to their desks and begin thinking about programming apps for disabled people; their bosses will begin looking at new target markets like special needs schools. At the very least, it means one really big thing: APPLE noticed US! Having the cutting edge technology tool company notice you is something to cheer.

Meanwhile, back in my little corner of the technologically challenged world, I've finally gotten the green light to go ahead and order Livie an iPad. Spring is the time when money begins to flow, with bonuses and tax refunds aplenty. After months of talking the iPad up, Linda finally had taken notice when the speech therapist had told her about the iPhone Livie was playing with and that Livie was very excited about. I had been telling Linda about the fact that you could get cases for the iPads that would make the more durable, but the idea that Livie would actually LIKE using the iPad never clicked until she started playing with an iPhone.

So, I'm ordering finally ordering the iPad. Me being the frugal shopper (read: cheapskate) I saw the 'sale' price of 399 on the old one (iPad I) and jumped on it. Before I hit the 'buy' button, I started to think about it; Linda gave me feedback from the iPhone speech therapist, and I asked the resident 'expert' too, Dillan. The kid has surpassed me in the technology department, I'm getting old, or maybe he's just getting good. Anyway, the faster chip, the front and rear cameras, the smaller size, and best of all, the ultra-cool cover that converts into a stand or keyboard rest, really sold me that the extra 100$ was money well spent. This is one of the very few times I have been on the North side of the technology adoption curve! Although now I'm having buyers remorse because we have to wait 4-6 weeks before it arrives. With the Japan tragedies also contributing to potential delays, my little Scottish alter ego is berating me saying "See what ya git for adoptin' technology early?"

We have so many expectations for Livie on the iPad. At the very least, it's going to be a great (and expensive) toy or her. She has very few things that she likes to play with, most of which are cause and effect buttons, screens or musical instruments. The 'fingers on' manipulation of the iPad screen is a natural for her as well as for many autistic kids. She likes the computer, but lacks the hand eye spatial coordination to effectively use the mouse. My hope is that the excitement of having this larger sized 'iPhone' that she already loves, coupled with the myriad of fun (and cheap) apps, we can develop her use of the iPad into a basic communication tool. There are quite a few apps for communication, ranging from .99 simple cause and effect thingies, up to a full blown AAC (alternative Augmentative Communication) devices app that can turn the iPad into a tool that could potentially replaces devices costing thousands of dollars...all for $189.00!

So here we are, waiting for the end of April to see if our latest bet will yield great results. Truth be told, we've invested in the past 10 times more heavily on other things, with both time and money. What's weird this time though is that I am excited about something others can relate to, others on the OUTSIDE WORLD! When I talk about going from two to three times a week for a occupational therapist, or going to see a doctor about an issue, people can nod, but they can't relate to it in the same way. But, if I tell them about the iPad and what's going on with autistic kids, their eyes light up; they have something they can tell their friends and relatives about what the iPad can do! It just feels good to be part of a revolution and pushing the cutting edge.

Best Laid Plans...

2011-01-16T16:59:00.002-05:00

I'm hoping that this week's traumatic events can possibly get me out of my blogger's block. I'm not sure how I would handle truly traumatic events. While stressful and mind boggling and beyond the realm of sanity at times, I can't qualify this week as anything more than challenging my resolve, ingenuity and stamina; I have to leave the trauma to earthquakes, fires, floods and the like.

It all really started maybe a week and a half ago, when Gracie came down with a real nasty cough. One of those dry, keep you up all night kinds...and it did. This is both Gracie AND my wife. Our unusual sleeping arrangements continue to be me in Gracie's bed and Gracie in my bed with Linda. Grace is already an all over your bed kinda sleeper and that combined with trying to stop the cough and stopping her from going on the Mac in the middle of the night, and Linda was clearing 2, maybe 3, hours of sleep for a number of days. We tried the cool mist humidifier route (do these things EVER work?) graduated to a nebulizer and finally a steroid in the nebulizer before we finally made headway on the hacking.

While this was happening, others were falling victim to this insidious virus/bacteria. Aly wound up being next over last weekend; followed by Jason and Livie. We're heading into a school week with two down, two on their way. In retrospect, I could see these grubby little germs wringing their hands in glee thinking "Who's next? We need a run down body; a stressed out individual to set up a long term camp...aaaah yesss...the mother!"

Monday, Aly and Livie are home. Linda's got a full plate with a dentist appointment in the morning. I volunteer to stay home and watch Livie and work at home. It'snot ideal for me to be trying to troubleshoot system issues while I have a little girl whacking me on the back of the head for juice, but it's doable. I take the day a little light from a work perspetive and figure I'd catch up the rest of the week.

Tuesday, Aly and Jason were out; Livie had a fever and Gracie was almost prophetically kept home because she had a field trip and would NOT have kept still in a movie. But I was able to get out, planning on leaving a little early due to a snow storm heading our way Tuesday evening. Linda's final defenses were breached sometime late morning on Tuesday. With my mother in law's emphysema, Aly convinced her to flee the premises. At 4 o'clock, I got a call at work from Aly saying "Mom's in bed and wants to know if you can come home early." Now normally, the pair of us are vertiable fortress of immunity from 16 years of battling every little thing from amoebas to zooglea ramigeras; even when they strike, they don't usually last long. Maybe 24 hours and out.

I figured, I had a bit of pampering to do and by Wednesday afternoon, she'd be in a much better place. My Tuesday had not gone well at work; I had more work to do than I anticipated with a Friday night deadline. People around the country who I work with had no clue of a tiny little storm hitting the NY/NJ area; and even less knowledge of the even smaller tempest brewing in the little teapot that is my home. When I got home that night, I knew this one was different. She wasn't moving; she was out cold and Aly reported that this had been her state for most of the day. There was level 2 chaos in the household; not that serious in a well-armed parental commando unit, but quite another story when the 'rookie' is running the battle...and solo. Add to the mix that I had one eye on an approaching storm and on lobe contemplating my options working at home with 5 kids and no backup. The other cranial lobe was occupied on getting up on all the medications all these sick kids were on, and on Linda's condition: I was panicked. The panic resolved itself as the schools began autodialing their automated messages announcing closures in anticipation of the mornings weather. 5 kids, 4 calls from different schools, 3 kids being excited as they came in; too much for me, I was one crazed individual.

Wednesday morning, I was up early in search of some combination of meteorological miracle and a Lazararus type revival of Linda. I looked out in the darkness and saw Mercury (maybe Venus) in the eastern sky. It was clear, unfortunately there was 6-8 inches of snow on the ground and the snow plow somewhat matched my growl as it went past. Add digging the driveway out to the list of logistical nightmares to handle. I sat down to get an early start on my work. Lucky me, a minor system problem. Looks like my 'free' time at home was going to get devoted to making sure that this minor problem is not a major headache. So much for what I had intended to do. Meanwhile, I get a croak from Linda. "Chest hurts...have same antibiotic as Aly...mistake from a few months ago...find it....." then collapses back into a wheeze.

Azithromax (said like Dirty Harry), the most powerful antibiotic you can get, it'll blow bacteria clean out of your system in 6 days. Problem is, can you find it? Well? Can ya...punk? We have literally closets and shelves dedicated to tinctures, potions, old prescriptions, salves, stock ups of sale medicines, you name it. After 4 shelves and reorganizing the liquid ibuprophen stash, I found it. OK, she takes the 2 Azithromax at 10, she should be turning a corner say 1 maybe 2 o'clock. I'm thinking in fever reduction mode. 2...3...4 o'clock, I'm not seeing a glimmer of anything. I'm thinking serious, emergency room, at least let's get her to an urgent care to make sure something is not really going bad. Against my better survival judgement, I rouse her. "Anti...biotics take 24 hours, if not better by morning, we'll go to a doctor." Now she HAS said some other things in the past two days, most of which were only semi-lucid commentary on schedules and medicine and the like. I'm really not sure of the validity of the statement, so I call her mom and she confirms that the antibiotics take 24 hours before they begin to kick in. My mental timer clicks on for 12 hours before I begin planning the logistics of moving hr to an urgent care.

Meanwhile, I'm timing conference calls with completing the driveway and trying desperately to give the 2 girls the level of attention they are used to. I'm losing on all fronts: the opening to the street was only one car wide; I'm completely distracted on the conference call and the girls are left to their own 'stimming' devices. The madness level is reflected in the depth of the junk on the floor and it's diversity. Crayons, paper, towels, cups, books, toys, bowels all piling along the 'path' in the living room like the snow along the side of the sidewalk outside. But the bigger problem loomed ahead: 5 kids needed to get off to school with no help from mom in the morning.

I did my best to prep on Wednesday night, but brain function was not at the top of the energy priority list. So I left it to the basics, they needed to be clean and they needed to be fed. They could clash so bad the could be rented as hazard cones on the highway. Homework, forget it, they were getting valuable training in survival skills here and now, the multiplication of fractions can wait a day or two. We got the girls fed, medicated, and to bed. I made a feeble effort at packing the backpacks the night before, but with general of the operation out of commission, I was going from memory. I went in to seek audience to pick her brain and asked specifics about what needed to be packed. She shot up from her horizontal position and moaned that she would get up and help me get them tomorrow morning and fell back down. "I need your BRAIN tomorrow, not your body!" I pleaded. Truth told, their hair is the only thing I am really not capable of doing, but I figured a bedside styling would not be too difficult. The rest, she could just bark orders at me.

Even getting up 1/2 hour early, I was floundering. I was missing some of the basic tenets of morning movement. Get em up early; get the oven stuff started early. Livie slept until 7:15 because I drove Aly to school; the lunches, weren't going to be ready until 10 minutes before the bus arrived. Linda insisted Gracie have a nebulizer treatment before she left. Livie was still really punky and by the tie she should have been ready, I decided she wasn't going. We focused our efforts on Gracie; it was the first time we had made the driver wait any length of time. It appears others do it all the time because she was not phased in the least when I brought her out. Right after that, Jason came up with a migraine. So I had two down at home. Jason is a cakewalk; I may have to make lunch and I had to do some upfront work on him to clear him of his headache, but other than that he's self-entertaining. Livie's another matter. She's non-verbal and she has difficulty finding ways to entertain herself. She also has trouble expressing her needs and wants. So attention seeking behavior may result in a foot through a wall or a window. No matter what work I'm doing, I have to be keeping one eye and ear as well as a piece of my brain on her to make sure she's got all she needs.

The day went better than the one before, but not as good as I needed for my sanity. Linda has proven she was still alive with her 15 minutes of help she gave me with Gracie in the morning. That stint had really knocked her out for the day though. Another minor problem at work eat up a good portion of my free time; I had planned to be childless all day, so the deadline I had intended to be on top of was again sliding to the very last minute. The day was pretty much a blur of juice, lunch, medicines and work (when I wanted to 'relax'!). Nighttime came and I was back at the end of that rope.

I was having trouble sleeping that night. Between fretting my deadline, my child hacking in my other bed and my bedridden wife, I kept getting up. Once to get Livie some more cough medicine; and once to get myself a drink. At about 4:30, I woke to hear the beep beep of the fridge door being left open. I figured I had left it open a few hours ago when I got the drink, I shut it and tried to go back to sleep. By 5:30, I gave up and figured I'd get an early start and try and get some of the deadline work done before the crowd started. I went to put in a disc on my Braun coffee maker and I was met with a scrawled note: "GRACIE HAS A HIGH FEVER, HELP!" I rushed into the bedroom and stuck my had down the back of Gracie's nightie. Hot... 102, maybe 103. I woke up zombie nurse and got the scoop. She had stumbled out of bed at around 4:00 and gotten Grace her ibuprophen. She can't remember how many times she had stumbled doing the task; she had stopped counting at around 3 or 4.

You would have thought that this was bad news. But in the logistical nightmare that had become my life, this was pretty good news, short term. Livie, I was resigned to keeping her home because of the cough; Grace was now a definite thumbs down. A couple of calls and I had pretty much a free morning, I just had to get Jason and Dillan moving. Aly was up and almost ready by now and she noticed "Hey, where's Dillan, he's usually up by now?" I went down and found a Dillan doing his moaning 'I'm not feeling that good' routine. OK, one more phone call, and OH yea, thanks Lin, a note for Jason for being out. I felt like writing: "Isn't it enough that i have to go through all this SHIT without having to explain it to you? He was out Tuesday and Thursday, I knew it, you do too now, have a friggin' great day!" Needless to say, I was more diplomatic.

After Jason was out, I started making some headway on the deadline stuff at work. I vowed to not let ANYTHING distract me (work-wise) from getting this done today; nothing short of a complete system meltdown was going to get my attention. ?I'm watching Grace out of the corner of my eye; she's getting slower, glazy-er. I'm reminded that her 4 hours are up on the ibuprophen, I'll give her 6 hours before giving her more. More work, get juice, get breakfast, get DVD, take Livie to the bathroom, forget to give Grace medicine...wait, what was that lat thing? Shoot, I forgot the medicine. By the time I checked her, she was hotter than see was at 5:30, by the time I gave her the Motrin, she was laying down.

Grace needs to go to the doctor for this. I should take Livie too for the cough; might as well bring Dillan in too to get the group discount. I've done it before, but it's always fun to call the doctor and set up an appointment for 3 kids at once. I guess it doesn't happen that often for them, because I can almost hear the person on the other end of the phone shake her head to clear it. "THREE kids???" She now tries to gain composure. "What time would you like to come in?" WOW, there's a sticky one I hadn't really thought through. Aly was not home from school until around 2:30-2:40; I CANNOT handle both girls myself at the doctors. The exponential law of child movement says that 2 kids can go in 4 directions; Dillan might be able to catch 1, I can catch 2 at a time...one would get away. "Can I get 3:00?" I lilted. "Doctor is only HERE until 3, the latest I have is 2:15." I took it and ruminated whether I should just take Grace. I finally consulted Dr Mom, who was not happy about the lack of late appointments (there must be a mom code thing going on where they can get them later or something). But we finally agreed to put it off until Saturday morning.

Back at 'work', I decided to call in as many chips as I could to get this deadline met. Luckily, I had enough social capital out there to get an It's a Wonderful Life 'George Bailey's in trouble!' response. By mid afternoon, I was feeling like the impossible would happen, that this thing would actually be finished by Friday night. Most of the cast of characters had been following my dilemma either through direct contact or on Facebook, but there were more than willing to help me filling the physical and mental gaps left by my ordeal. By 5:00, I had said my thank you's and they had left for the weekend. I had one more piece to do, and I felt that rush of finishing just in time. Livie was crying from lack of attention and for her supper, I kept saying "Just a couple of more minutes". I felt the entire week lifting as i made the last entries. I was DONE and my work world wouldn't be in crisis mode on Monday!

I slept better that night, and my 10:30 appointment at the doctors felt like a coasting to the finish line of getting through this all. Linda had since begun to venture out of bed, but no where near at dealing with the girls ar the doctors strength. Aly was protesting loudly that "Teenagers DON'T DO mornings on the weekends". She had been instrumental in keeping this whole thing together this week and I was sorry to give her one final insult to her injuries, but it couldn't be helped. As per usual, we took up half of the waiting room. I forgot what Saturday's were like at the doctors, this place was packed! We had to keep the girls occupied to 45 minutes waiting. I felt like an offensive lineman blocking Live and Grace from getting too close to the infants and toddlers and sneezing in their face. That's all I'd need, the guilt of having sent an infant and her parents to the emergency room with THIS thing!

We finally got into the examination room, surprisingly roomy enough to hold 6 (including the nurse or doctor). While the nurse was taking the roster of issues, the covering doctor popped his head in, and popped back out. I leaned over to Aly " I think we scared him!". When an obviously harried rookie of a pediatrician came in, I said "Welcome to my nightmare" and started down the list. Linda had mercifully supplied me cheat sheets for all the issues to cover. Is she amazing or what? Through catatonia and delirium, she STILL manages to keep track of all the things that need to be cover. We started easy to hard. Got through Dillan, Gracie, and I stopped at Livie. "OK let me give you the background first. Livie is non verbal and probably won't comply with ANY commands. She won't have any trouble with the heart, lung or even ear check. But if you are looking to get into her mouth to check her throat, we are going to have a fight on her hands." Then I proceeded to run down the medical issues. Out the door we went with two prescriptions for 44 Magnums, I mean Azithromax, and one sample of Nasonex for Dillan, and we were back on the way home.

This is the full account of the week that has surpassed the Perfect Storm of 2007 as the greatest virus bug to go through our household. I attest that there are no embellishments in this story, the account is almost exactly as it happened. Witnesses can be brought forward for testimony of it's validity. Much as I detest Hollywood endings, the hero of this story did NOT die at the end (at least not as of Sunday evening); it was not rewritten for box office appeal. Yes, I should be congratulated (he said self servingly). But I realize that I am no different than that single mom taking care of more than one kid and trying to hold down a job...except for two things. One, they probably have to do something like this semi annually. Two, they wouldn't be able to pull off the Dirty Harry parody. A tip of the hat to all those moms, and make sure if you know your waitress is one, tip her a lot more than you normally would. These ladies need to have canonization proceedings started on their behalf.

Stick Together...Help Someone Climb the Hill

2010-08-02T18:30:00.000-04:00

I think I did my good deed for the week...
I was at work today and I overheard a coworker talking on the phone. The conversation was obvious to me, but I'm not sure others would have picked up the on the relevance and resonance (and even urgency) it had for me and for her:

"Well, he's very reliable and punctual"...
"Yes, as long as you give him clear instructions, he will be able to follow and do what you need him to do"...
"His case worker can give you all the details of his work history"...
"Well, no he has seizure activity, so we can't get a license for him"...

I already knew this woman was caring for an adult on the autism spectrum, we have talked in the past, so we know each other's general situations. I guess if someone else was really listening, they would have picked up all of the things in the conversation. But I am sure that they would not have known what this conversation REALLY meant to her. I haven't been following her situation that closely. But I know about the challenges that adults on the spectrum face getting and keeping a job; and the caregivers' challenges trying to arrange for them to get to live a more independent life. I just knew this was one of those 'little' moments that needed recognition. I sent her this quick email:

Sorry to eavesdrop before...
Don’t know how to properly say it, but thanks for taking on his challenges to try and get him to a place in life where he can be somewhat self sufficient. I read about issues online with autistic people and their parents/caregivers fighting an uphill battle getting everything from housing to jobs to health care. I forget sometimes that you are ‘in the trenches’ fighting with the rest of us. If you hit a wall somewhere, don’t hesitate to bounce it off me; I may be able to point you at resources that you hadn’t thought of or known of. You have a lot more knowledge about his specific situation than me; but you never know what I may have picked up talking within the autism community.

Again, sorry for hearing the personal call and reacting to it, but you know, we have to all stick together…

About an hour later, she walked by my desk and quietly said:

"You know, if it weren't so politically incorrect, I'd give you a great big hug right now...thank you!"

"Well some body's got to give recognition when it's deserved" was what I replied.

Sometimes, your instincts are right on the money. I'm not sure I was the cause, but she was in a very happy mood the rest of the day. I'm glad I could give someone else a little extra push up the mountain; it's a long way, and it's good to show people that it's worth the effort.

ADVERTISING

2010-06-06T16:11:00.000-04:00

I have to admit, I'm a bit over the top. I have three autism bumper stickers, a ribbon on the antenna of my car. I tend to wear an autism awareness shirt on casual Fridays (and any other day I can get away with), I have an autism magnet at my cube. The idea is to just say to people "Hey, here's someone who has no problems being out in the open about autism and will talk about it if you have any questions."

A few weeks ago I was wearing and Autism Awareness golf shirt on a Friday at work. I was approached by one of my coworkers who's daughter just had her son diagnosed and we talked through some if his issues and what kind of things to expect about services in the state she's in and hat usually happens after age 3. Later that day I got involved in conversation with another coworker about the PBS Independent Lens film "The Horse Boy", and I got to convey some of the issues around things like proprioceptic and other issues that horseback riding might help.

That was a good day to look back on, but today has not been great. The power in our house had intermittently been going off, and the main breaker had been switching off. Today was about the 6th time it happened. The first time I had received a panicked call from my wife who finally found out it was the breaker. But today, no matter how many times we reset it, the power would not go back on. I spent a good hour combing through the yellow pages and my cell phone hoping to find an electrician who was not only honest, but available on a Sunday. I left a few messages, got a few "no way I can come today's". After resigning us to spending the night in the dark and waiting until Monday morning, I finally got a call back from a local guy who said he'd be over in 15 minutes. Oh happy day! The figures were pretty bad; It's almost 90 here today; we have thousands of dollars of food in the freezers of the house...and 5 kids screaming for electrically powered entertainment (I'd include Linda and myself in there too). So, my right arm and maybe a first born would be on the table if this guy wanted to charge it!

He showed up like he said and was able to fix the breaker with something temporary. He didn't have the proper breaker so that we'll have to do without the AC for tonight, but the food and our sanity would be saved at least. But to top it off, when we handed him the check with the 'Autism Awareness' logo, it got him to open up about his 9 year old nephew who is on the spectrum in the school district in the next town over. We talked for a few minutes about the issues and challenges facing him and his parents dealing with the town about providing what he needs. But it was good to be able to have a touch point to let both him and us that we are not alone in this universe. So I'll write today off as a 'good' bad day.

Hope You Have a Good Time With Your 3%

2010-04-20T23:14:00.005-04:00

I'd like to thank all the tightwad idiots in our township for defeating our school budget today. The next time you complain about the decline of your town, your county, your state and your country, you can give yourselves a well-deserved pat on the back for not adequately funding the education of future generations. Now go take the bus down to Atlantic City and blow your 3% winnings on the slots...maybe we can get some of your losses back into education for NJ schools. Meanwhile, you'll have plenty of highly qualified workers to clean your bedpans when you are an invalid in a nursing home because you didn't want a 'non-American' doctor taking care of you. Sorry, no money in the budget to educate those future doctors in America, so there are no good ones.

Thanks too Governor Chris Cross-tie for helping those budgets along by telling voters to vote down school budgets to complete his vendetta against the teachers union. I suppose all these people who send their kids to private schools (including him) need all the tax breaks they can get. Let's hope we still have a state left to vote him out in 2013...

Sorry folks, I'm pissed and our kids WILL suffer, I can't let it go without at least a rant...

Mr Lavender Corn Tortilla Man

2010-04-10T23:00:00.001-04:00

I think it is a truism that the first step in healing yourself is to admit to your shortcomings. Number 137 on my list is the fact that I can't stand to waste food. Case and point today: what will undoubtedly become the Great Lavender Corn Taco incident of 2010. What started out as an attempt at winning brownie points with the kids giving them one of their favorite meals, turns into them being re-exposed to one of my many psychological weak spots. OK, I freely admit to obsessing about using up the 60 Easter eggs we colored (it takes a lot of self control for me to throw out the cracked ones, even after discovering the fissure 1 week after they were boiled). I will eat any orphaned foodstuff that others turn their noses up to. But tonight was exceptional.

It was 5:00, dinnertime looming with nothing defrosting and the probability of a prepackaged meal for each individual in the house looming with it. The stroke of luck was that Linda had to go to the market. A storefull of possibilities; endless choices; all the healthy; all the decadent; all the PRESSURE! My mind was a blank. Needed to be quick, easy and something the kids would eat at least; bow with loving servitude if I got it right. Chop meat was mentioned and the idea was clear and perfect: Tacos! The quintessential quick meal that would not only bring me adoring fans; but is even technically not a prepackaged food; it could even be considered healthy (if I could only get them to put lettuce on them).

Linda prepared the short list: 2 lb chop meat; packaged shredded cheese; Newman's Own Pineapple Salsa for dad (THE best jar salsa on the market; with the added benefit that no kids will touch it!); something missing...hmmm, oh, TACO mix. "I think we have that Lin, in fact I'm sure of it!" My certainty was because I have moved packages of taco meal package at least twice lateley and I found them on the bottom shelf: two meal packages and a spare dozen, for a total of 36 Blue Corn Taco's...this meal could be epic...they were even Organic, even Livie on a GF/CF diet could partake. I opened one of the packages just to make sure all ingredients were there: tacos, mix, even a packet of salsa. Hmmm, the tacos had kind of a weird stale smell to them, I attributed it the... blue...corn-ness of them. Ah well, "Yea Lin, we're good, get going!"

While she was away, I prepared for a fast turnaround, got the pan ready, tore up the lettuce and squeezed out the salsa. Hey wait, salsa really shouldn't be brown, it really has a strange taste. Well that must be the...organic-ness of it, besides, I'm the only salsa eater in the house and NOPS is also on the way. Linda walks in the door, I turn the heat on the pan and by the time I take it out of the bag and package, the chop meat is sizzling and browning. Once browned, the mix and water goes in and the mix goes in...with the consistancy of bullion cubes. But it dissolves easily and 10 minutes later, we have culinary perfection.

Last is the shells themselves; I fire up the toaster oven and open up the 24 beauties with 12 unopened in the bullpen as backup just in case it goes really really well. Well, putting them in, I notice that they are not that dark purply blue I usually attribute to the standard blue corn tortilla; they are more a tinged dark grey. As they warm, it's clear that the color, and probable freshness are in serious doubt. I hope and pray that the 5 minutes will transform them from just slightly stale to decent, edible shells. DING, they are out, now they are lighter grey, with a pleasant lavender coloring with spots of light brown. My appeals to the Almighty are more fervent now.

In my defense, everything ELSE is fine: the meat is flavorful and near normal; all the condiments, save my resin colored salsa in a tube, are fresh and delicious. But somehow the shell is a key piece in this meal; Aly gets through her first taco before she realizes; Dillan, gets about 2/3rds through, before questioning the emperor's outfit. "I'm not really liking these shells." he tentatively says. That's it, the insurrection begins. Jason immediately spits out his first mouthful and say "I'm gonna be SICK." "Bill, I THINK these things have been in the closet for more than a YEAR." Linda says. "Hey, they AREN'T a year old," I defend. The date on the side of the box says April 25th 2009. If that's the manufacturer's date, the are clearly NOT a year old." I'm stubbornly putting together my 3rd one, not enjoying it mind you, but they are not THAT horrible. the kids look at Linda. "Can we put the meat on the Tostitos chips?" they say, almost in unison.

I'm left to consume 18 shells of questionable edibility. Mercifully, two are broken. I think I got to the top 10 before finally giving up and relenting that they are indeed horrible. The table was treated to yet another telling of the Great Amaranth O's Incident of 2005. During our initial introduction into the gluten/casein free diet world, we needed a substitute for Cherrios. Searching the internet, Linda found a visually perfect match. Unfortunately, while the cereal matched the Cherrio to an 'O'; the taste matched the box more closely. But given it's incredible nutritional value (and price); I proceeded to try and eat the four boxes she bought. I got through 1 1/2 boxes before Lin put me out of my misery and threw them out before I could protest.

So that is the first of my 12 steps to recovery; the picture above was one of several cathartic exercises (created by Aly, allowed by me). I also created several sculptures with the remaining 10 shells. As a final commitment to my recovery, I also took out the last package of shells and smashed them on my forehead (I do admit to having some trepidations, because the date on the package was 1 month later than the packages I had opened). Of course I will have my Hard boiled egg on an English muffin for breakfast and egg salad for lunch, but I assure you that if the egg is too difficult to peel, I...will...throw... itoutwithoutathought. I feel better already

Autism in the Media Continues Following Us

2010-03-08T17:30:00.001-05:00

Not to be outdone by my experience stumbling on the media portraying autism last week, Linda had her own experience of autism deja-vue on Sunday. She had missed the whole experience I had with the Parenthood premier. "I experience autism in my REAL life; why do I have to watch about it in my entertainment?" she had lamented when I offered her the on-line episode to watch.

She has been experiencing a little cabin fever of late and the opportunity arose to send her out to the movies with her mother and my oldest daughter on Sunday night. After making sure that both girls were fully ready for me to just coast them into bed, they went out to the movies to see something called Dear John. It's one of those 'chick flicks' that a real man can't be caught dead in (probably because we're not supposed to cry in public); so giving them a ladies night seemed the apropos thing to do.

What she did not realize was that there were subplots involving the leading man's father possibly being Aspergers and one of the leading lady's friend's child also being on the spectrum. She gets home (after I scramble to get a sleeping Grace into bed just before the door opens), and exclaims "I just can't seem to get away from autism, it's just everywhere!" She enjoyed it anyway, and I got back a wife who was a little less stressed than when she left.

I guess I'll have to rent it when it comes out, just so I can critique the portrayals, mind you. Real men don't have to tell you that they cry at movies at home...except maybe when Old Yeller dies!

Surfin' A.S.D.

2010-03-06T21:15:00.004-05:00

As it happened (no...REALLY):

I was getting the girls ready for bed and officially ending the 'children's hour' on the TV, and I started surfing the channels beginning at Channel 2. Up to 3, then 4 (NBC in the NY area) and stopped on the name Parenthood on the ID on the screen. Wow, Parenthood's on, I love that movie! Linda and I always identified with many of the people and situations in the quirky family, and especially fancied ourselves the Steve Martin/Mary Steenburgen couple, with all the overflowing neurosis and children they had. If you have kids, a family and/or dysfunction, I highly recommend it.

But wait, this wasn't the movie, but a new series based loosely on the movie's theme. It is produced by Ron Howard, the original movie's director, so I figured I'd give it a few minutes, even though it was 2/3rds over. I had heard something about them doing this show so, I treated it a sort of background noise until I got to a scene where a mother was talking to her husband about what the school had said about their child. She started talking about educational issues and I thought jokingly 'Oh boy lady, better think about autism'. I just think of the world within my orbit of course, 'anthroBillmorphize' everything. The conversation continues for a few seconds more and the mom (Kristina), says "Adam, they say that Max has Aspergers Syndrome!" Huh? Wha? Wait! The kid's an aspie? Why haven't the circle of autism people online been talking this up? I go to my trusty laptop and go on the NBC website and find out it's the premier episode.

I have no idea if, or how, Max was portrayed on the show, they were talking about his quirky behaviors, his tantrums and how it all adds up to Aspergers. The dad was in denial about it being anything that he couldn't fix (a la the Steve Martin character in the original movie about his kid). I'm sure we will be hearing more about this in the coming months, weeks and hours. NBC is setting out a tall order having to portray an aspie week to week (it's an ensemble cast, so I doubt there will be weekly storylines on him). The autism community is a fierce critic and if they have a stim out of place, or a behavior out of line, they'll surely be hearing about. But I have to applaud them for trying. Let's wish them good luck and keep the pressure on to give an accurate portrayal of the issues facing the parents and the child in the real world we live in.

PS. I utilized the ' view complete episodes' functionality on the NBC website. I'm not quite sure if I agree witht the portrayal. I had a problem with the term 'educational therapist', but even though I never heard of one, by my google, doesn't mean they don't exist. I'm not so sure that a kid of 8-10 (not sure of his age), could not be diagnosed. Again, being a parent of one and having another and being in tuned to autism, I can't see how it is missed, statistically speaking, I'm sure it happens. I have to give them a little leaway, they are doing a premier and the had to do a whole bunch in the hour they had. I'll leave it to the rest of the jury. I'm not really that happy, but I'll give them a few story lines to get it right....

Is Autism the 'Default'?

2010-02-28T16:50:00.000-05:00

Over the past few months, I have been ruminating over whether the changes in the DSM V criterea for autism will be beneficial to those in the confines of the spectrum. Most 'in the know' understand at least what the DSM criteria is; I don't think anybody knows what the impact of the changes to it will be. The short explanation of the changes in the DSM V is that they will be rolling most all of the various classifications of autism spectrum (autism, CDD, PDD/NOS, Asperger's) into one broad category-autism spectrum disorders.

Somewhat unrelated, mi 'amiga' en Argentina, Maria, recently put up a link to a new study on co morbid psychiatric conditions in Asperger's. Not that is presented anything earth-shattering, but it was thought provoking. It stated that upwards of 74% of Asperger's and high functioning autistic (whatever that means) kids between 9-16 had other psychiatric conditions, like behavioral disorders, anxiety disorders etc. The numbers seem shocking to the naked eye; but those of us wearing those rainbow-colored-spectrum glasses, it's somewhat of a confirmation of what we already know. So many of these conditions exist in all areas of the spectrum, that they are almost considered part of the spectrum.

Let me edit that last statement to say that very often, these co morbid conditions are treated and diagnosed as part of the autism spectrum. If anxiety over an uncomfortable situation or an out of place object causes someone to stim and cower in a corner, well that's 'just the autism'. If a child has a tantrum because they did not get what they wanted the way they wanted, just 'part of the autism'. I can't necessarily blame educators, doctors or even parents for taking that default view, but it does have the potential for causing problems.

We will often, out of ignorance, take this 'default' view; that our child is just like other autistic children. Of course that's true; there are common issues for all our kids, and we can gain better understanding by looking at them with the commonalities included. The problem lies in the fact that, while we think of our world as so vast, autism still only represents, at most, 1% of the population. Even though we see wide variety in the spectrum, others outside of it are not as in tuned as we might be.

Think of it this way: we are Volvo. Volvo represents about 7 out 1000 cars sold in 2009. I know, a little light, Buicks would have been better, but I have to be global and I didn't want anyone drawing GM analogies on me. Regardless, those Volvo drivers see a whole host of different models, engine types, body types-- but to a general mechanic, it's just a Volvo. He may have worked on a Turbo Diesel a few months ago, but hey, YOURS is a gas engine and it's a newer model; the one he worked on before is COMPLETELY different than yours. It's a pretty good analogy, aside from the fact that I wish I had a manual for all my 'cars': autistic and NT alike, and a dealership that specialized in my Volvos in particular. Back to these autism 'mechanics', they have no manuals no real specialized training, so when they get our Volvos in their shops, they basically look up what most Volvos usually need repaired and, unless they're that solid gold mechanic, fix that type of issue...whether broken or not.

It sounds a bit far-fetched but that's what frequently happens with doctors and school systems. Our first pediatric neurologist saw Livie for all of 15 minutes when she was three, blanketly stated "Give her as much discreet trial ABA as she can take", and bid us good day. School systems will often set up one particular method of autism therapy and, whether your child is non verbal with oral apraxia or PDD with OCD issues, the treatment is generic: put them in the 'autistic' (or worse special needs) classroom. My oft repeated story of a pediatric gastroenterologist who did not want to entertain the idea of us doing a gluten/casein free diet, but was willing to attribute my daughter's reflux and vomiting to "probably a stim". That last one is particularly disturbing because the doctor literally dismissed my daughter's physical and medical symptoms and 'diagnosed' them outside of her area of expertise as just part of the autism.

This drags us back to the dual point of my post. The first is that all too often, much of what our autistic kids do is just sub categorized under the umbrella of autism. It seems to be the alpha and omega when it comes to neurological, behavioral/educational and even sometimes medical diagnosis and treatment. So much can and does get lost because of this type of laziness. The second point is that the DSM V is going to consolidate autism into one generic diagnostic code. The good news is that it will be much easier for doctors to feel comfortable assigning an autism spectrum disorder diagnosis without worrying about which group they need to be classified in. The bad news is that we will still have to be able to tease out the individual issues within the spectrum for our kids to get the proper therapeutic, educational and medical treatment.

Given all the progress we have made in the past 8-16 years with autism diagnosis, treatment and education (both because of and despite of the DSM IV), I doubt we are headed backward in the care and treatment of autism. But nagging in the back of my mind are those mechanics. I worry about those new parents in their newly diagnosed Volvos. Undoubtedly their will still be doctors, districts and developmental therapists with a basic idea of care and maintenance, but absolutely no idea of the difference between a 24o DL, a PV544 or an S80. It's going to be up to the parents to push the differences hard in 2013 when the new criteria comes out. We need to make it clear that while these children and adults may 'autism spectrum disorder', the conversations need to start and not end at that point.

Septuple Jeopardy

2010-02-14T23:30:00.003-05:00

It is a rare occurrence that you get the whole fam damily out the house all at once for any reason. Since there was going to be a family gathering of a complete nature, well, of a NJ complete nature anyway, since is just about 1/2 of my immediate family is in TX. So we commit to getting emptied on inhabitants before noon on a Sunday. OK, fine! For all those with logistical military training, that's not that big of a deal; but for the rest of us, this ranks just below family pictures in rank of difficulty. 7 humanoids bathed and reasonably dressed...check. 7 hours worth of supplies of the keep-the-girls-from-reducing-brother's-house-to-smoldering-mess caliper....check. 7 people, 7 backs, 7 nerves left packed into a mini-van...check.

Sidebar: Minivans ARE aptly named. I remember my dad's 1969 Townsman; nine passengers MEANT 9 passengers. 3 on the front bench seat; 3 in the middle; 3 in the trunk seat facing the guy behind you (free to be as vulgar to them as long as dad didn't catch it in the rearview). Yea, having the youngest in the middle seat of the front was an inconvenience. But no 'child safety seats' and this thing was as wide as a Mini Cooper is long. In fact, if you hit a mini in this thing, you'd curse the road crews for not fixing that pot hole. The 'mini' van, however claims 7 passengers; yea 7 passengers that make Paris Hilton look like Oprah Winfrey 6 months after pissing off her dietitian. 2 seats in the front; 2 in the middle and room for 3 (MMHMM) in the back.

Sorry, I digressed. We were due out of the house for a flawless execution at 11:45. Unless the house was riding on it, that's not going to happen. I'm shooting for more like 12:30...12:50...OK, I settle for before 1PM. The argument for the middle seat is settled (one boy gets the pain on the way there, one on the way back); the seatbelts have been properly stationed (I missed Liv's booster seat, more on that later); we're off an running for or 75 minute tightrope walk. I things go badly of course I WILL TURN THIS CAR AROUND.

The route to my brothers house has two distinct and equal paths; the turning point marked by a divided highway on Route 287; I choose the '78' route. 50/50 shot...better than that...it's a Sunday for ------'s sake. I bet wrong, there was a 'jaws-of-life' serious accident on the side I chose. tack another 15 minutes onto the journey. We're almost 1/2 hour late. Fortunately the fam has been very understanding on this whole venture and has not had anything planned around all arriving within a 90 minute timeframe, so we are welcomed with open arms.

The day goes off without a hitch; no major appliances destroyed; no holes in the walls; no bathroom accidents anywhere but the bathroom. It's a challenge keeping up with the girls, and there's not a lot of time for schmoozing; but everyone appeared to have a wonderful time outside of the normal life. But the journey home still looms.

It's a lot easier getting everyone back in the car; just don't forget anything (Jason went back in to the house to get his DS and Gracie's 'pink game' was missing for a stressful 2 minutes). Jason was NOT happy that he now had the middle seat; and Linda discovered that the booster seat was in the trunk. I got out, opened the trunk, and got Livie scrunged into it...everyone had to give up that extra 6 inches in the back seat, so SUCK IT IN. Jason's mood went from sour to downright toxic and as a result hee was losing things left and right. "DAAaaAD, I lost something under the seat. Out of the driver's seat, over to the sliding door, on my knees..."What'dya lose?" "My Bakugon ball!" (5 seconds later) "We'll find it when we get home (slam)". I'm getting on the road before the tires go missing. 2 blocks later "DAAaaaAAD! I lost my drink!" 1/2 block later, I realize that it's either get the danged drink or spend a couple of hundred dollars to get a detailer to get the blood off the seats, so i slam on the brakes and dig to get the little 8 oz water that slid under his feet.

At last, peace and quiet for on a treacherous 45 mph winding Jersey road with the potential of black ice...so much more relaxing; the guy tailgating me the whole way, but a minor bit of sand in my shoe in comparison. Nice and quiet...better yet, no child falling asleep in the car an hour early. We're back in our home, back in our element.

Card Games

2010-01-19T23:23:00.001-05:00

I came across my two oldest kids playing Go Fish at the dining room table on Sunday, and found myself, a regressed 9 year old, thinking "geez, what a BABY game!"

"Hey why don't you play a REAL card game?" I taunted, almost hearing my voice go from adult to adolescent.

"What game SHOULD we play?" Aly said with intrigue

Without even remembering how to play, I reflexively said "Spit!"

Spit is like a two player, highly competitive version of solitaire. Luckily, the extension of my brain, Google, was able to refresh my memory as to the finer points of the game. One of the recommendations on the page said to play with an 'old' deck of cards, because if not, your new deck will be destroyed before either person won 5 games. The first round started slow, but by the third round, it was like they were born to the game.

The yelling and slapping cards flashed me back to the 'good ole days' of our family of 7 kids and the truly cutthroat nature of all our games, especially the card games. Spit, War, Crazy Eights, Canasta: I remembered many names but not necessarily how to play. Then my subconscious twitched a bit as I had vague memories of pieces of other games: A game where you passed cards rapidly to the player on your right and picked up from your left; when you had 4 or a kind, you stuck out your tongue; last person not wagging their tongue was out (or something bad happened). 'Something bad happened' triggered more repressed card-memories: "Hey wanna play 52 card pickup, Billy?" "Sure! Hey, what the? MOOOOM! He threw all the cards and ran away!". Deeper I went to a dark corner of my memory where we played 'Knuckles'; I forgot the exact game but... PLEASE... don't let it be a 10 of Spades! (dark cards got hit hard on the knuckles; red cards, lightly).

Being the last of 7 kids, in an competitive environment rivaling Chinese gymnastic camps, I didn't stand a chance at games of skill or quick thinking. I was the last in line to be the recipient of finely honed skills, played and replayed jokes and vicarious revenge on the older siblings heaped on me. Even as a parent, my wife still had to remind me not to instill the 'value of learning to lose' too much. "Let Aly win sometimes" she'd plea. But alas, I have passed on the genetics of competition and we have to remind the older ones not to use their powers to crush and destroy the youngers.

I was looking for some deeper meaning in all this, but now that I've finished, I've found none. But it seems that whoever I talk with about card games, they somehow get that same visceral response, especially those in families where they were near the bottom of the age bracket 'seed'. Their eyes dialate, their fingers twitch and they're ready to do pre-adolescent battle once again.

Car Wrecks

2010-01-14T09:42:00.000-05:00

No, my car is fine. No, I did not witness something horrific on the road, a la the Bruce Springsteen song. I'm also not referring to the oft repeated idea that autism in all it's forms, is likened to a train or car wreck.

It's more about the idea of the innate desire to look at something horrible, to see what's going on, to maybe want to help out. The big one right now of course, is the absolute devastation in Haiti. Before that, for me it was the situation with Zakhqurey Price in Arkansas where he is battling for his educational life and his freedom from being institutionalized.

I know how most people affected by special needs situations feel about Zakh's situation and the general special education environment. But I often wonder how the population outside of our inner circle feels. I am always drawn to look at newspaper articles about special needs education to see how the public at large reacts to them. I hope that mainstream America is not as bad as the commentary that inevitably shows up at the end of the article. Nevertheless, I have to 'drive by' and stare at the ugliness and twisted mettle that spews from some in the world. From a recent article about fighting for prevention of restraining/isolating tactics in school systems:

Teachers and other school personnel are not here to control your child from endangering themselves, other students or the teacher. If your child is a danger to themselves or others, most importantly, other children, then your child should not be in the school, or even better, you the parent should be sitting beside you child in the classroom to insure that your child does not injury or kill another child. The job of the teacher is to teach, not to be a bodyguard for all the other children.

As so often happes, the "school perspective" has been totally overlooked. Schools historically have been established to teach something like a standard curriiculum to the children of the community. For that to happen parents MUST SEND THEIR CHILDREN TO SCHOOL READY TO LEARN. Making teachers responsible for children not prepared to learn the standard curriculum is irresponsible and robs the schools and their teachers of their time and ability to teach those who are ready to learn.

We wonder why school systems like Fort Smith think they can write their own rules and change IDEA, AWDA, IEPs and the hundred other acronyms designed to protect children. Just look to the rabble with the loudest voices; or look at the car wrecks that drive the school systems...

Too Many Moms

2010-01-11T13:00:00.000-05:00

If you have more kids than hands, you'll encounter this sooner or later.

"Jason, it's time to start cleaning up!"
"Alyson, you're supposed to be cleaning, not sitting down!"
"Dillan, are you supposed to be eating that ice cream?"

You probably think these are standard parental phrases uttered by standard parental units. But, in our house, these are now part of the lexicon of a bunch of parent-wanna-be's, our kids. My phrases to counter this are "Do you really want my job?" or "Never mind what he/she's doing, what are YOU supposed to be doing?" or my two favorites for the boys, "Did you give BIRTH to him/her?" or "Since when did YOU grow breasts?"
It's gotten to the point where more time is spent parenting by the three oldest, than they actually do. The idea of parity has become a way to thwart progress in the household. If there is not an equitable sharing of the workload, a strike in the form of self appointing themselves the parental supervisor ensues. We wind up uttering those phrases we swore as new parents we would never utter: "Because I said so"; "Life's not fair"; "It doesn't matter what you think" and my personal favorite from Ralph Kramden in the Honeymooners "I am king...you are nothing...a peasant"
As they get older, this parental tendency is also beginning to bleed over into conversations with and about Lin and me. They have somehow appointed themselves pseudo guardians of the girls and of each other, sharing with us their vast knowledge of how we should be. Don't get me wrong, I really don't mind when they chime in with advice like "You know dad, I don't think it's a very good idea that you let Gracie jump off the back of the couch with the parachute." (especially, if I did not know it was going on). But on subject matters about whether Gracie should be finishing her vegetables, or whether Dillan should be allowed out before finishing a task; well I'll fall back on the 'I'M the parent dammit!'. There's already two of us making decisions; we already have our own consciences to contend with thankyouverymuch. There are already too many voices inside my head questioning all my parental decisions; I don't need another chorus outside my head reminding me of all the alternatives and injustices of my decisions.

All this culminated last week when I found out two things. First, Aly invited Gracie into her room (a rare privilege, since even I am discouraged from entering). After looking around a bit, she said "We NEED to clean up in here". Later that day, Gracie was at the dinner table with Dillan. After hearing it so many times, Gracie made a great generalization and said "Dillan, DON'T tilt your chair back to the wall!". Another mom enters the fray!

The phrases Gracie said came straight from our mouths inflection and all. So, in one respect, it's part of the echolalia. But then again, ALL my kids are really just rehashing what they hear and regurgitating it back at us, based on what they perceive our morals and values to be. That's what is probably most annoying, they are right and they are using our own words and judgements against us. Just like 'you are what you eat'-- they are what you say and do. I forget that all too frequently and I'm glad Gracie reminded me...

The Christmas Rainbow

2009-12-29T12:40:00.000-05:00

(I just updated the date on this to give people notice that I finally got the video up. So if you've read this already, just scroll to the bottom for the video, if not, just read on for the full effect)

It's finally over, and we are all still alive and happy, the world did not end, governments were not overthrown, buildings are still standing, and best of all, we're happy! No, it's not the wrapping, that's still going on. Perhaps I should turn back the clock a few months and explain...

It started sometime in September, the school year was just getting into gear and the school my two youngest girls go to announced the play they would be putting on this year for Christmas. The show would be The Wizard of Oz. They would cast Livie as a Lullaby League dancer, all would be the non-verbal girls and they would have them sign the words while dancing. Then, the surprise of the century...they asked if Gracie, my 5 year old youngest child, would like to play the role of Dorothy!

DOROTHY? GRACIE? Sure she was doing very well so far this year. Her social and behavioral issues were getting better by the day, and her echolalia (ability to copy and mimic what she hears) was almost legendary; but my little girl, taking the lead in this play? I could hardly contain my pride and joy, I let the idea swell and propagate fantasies of movie deals and singing contracts, or at least You Tube viral video success!

We went to a back to school night a few weeks later, and another ominous thought pattern germinated. We were in the auditorium of the school with a group talking to the music teacher and she was explaining about the play. I started getting teary eyed when she talked about Gracie and Dorothy and 'the song'. Then, I realized...she didn't mention anyone else, no understudy. The fate the school's play was riding squarely and EXCLUSIVELY on Gracie's and our family's back. Did they realize what they were getting themselves into? We're not exactly one of those clutch players out there. It would be like having Peanut's Charlie Brown as your baseball team's closer, bringing him in in the bottom of the ninth with a one run lead, no outs and bases loaded. Or having Lucy Van Pelt as the football holder for that game winning field goal. Stuff...just...happens to us; life goes on, but we'll often leave the tattered remains of special events crumbling behind us!

We tried to shake off these ideas like a bad stiff drink. Damn the torpedoes, full steam ahead. We went headlong into 'wizard mode'. We got the movie, the CD, the Dorothy doll, the costume, the shoes. She began to learn every nuance of every line of the movie. My wife called me one day and put her on the phone to have Gracie come on and say in perfect clarity:

It really was no miracle. What happened was just this.The wind began to switch - the house to pitch and suddenly the hinges started to unhitch.Just then the Witch - to satisfy an itch went flying on her broomstick, thumbing for a hitch

We even got to the point where we worried that she would wind up reciting everyone else's line too, and maybe even get upset if parts of the movie were left out.

Through it all, she would sing clips of the song "Somewhere Over the Rainbow" to us, but she'd never quite give us an a capella rendition all the way through. It really didn't concern us though, because she had every bit of it down pat, we knew with the right prompt, she would just move right through it with no problems. Everyone in her life knew she had it too, she'd sing it on the bus for the bus driver, in bed, she was also singing it at school for the music teacher and everyone else who could stand it.

As the weeks drew us closer to the date, we became more and more paranoid. I'm not much for superstition, but outside of the circle of people that knew she was going to be Dorothy, I was keeping silent. I just thought that if I made a big deal of it, that the you-know-what faerie would come along and put the whammy on the whole thing. As the weeks turned to days, the paranoia became more concrete. We were hoping and praying that no illnesses would go through the house, as is pretty much the tradition between Thanksgiving and New Year. So when my mother-in-law went to tend to her sick son a week before, who wound up having the flu, we forbid her from setting foot back in the house until the day of the play.

We finally got to the day of the play and my fear of this imagined bad luck was at a fever pitch. I was convinced of a broken leg on the ice; or a broken down car on the way; or a torn Dorothy dress or some other unforseen event-shattering event. Nothing came. The only truly possible fear left was her ability to hold it together for the two shows that were scheduled for 9:30 and 12 noon. We knew full well that if she got it in her head to not do it, or something set her off, we could have a major meltdown of both her and the play.

We had the entire family in the audience; we pulled the three kids from school and my mother in law and brother in law, we all took up 2/3rds of the front row. We wanted nothing but smiling familiar faces greeting her for every scene. The show started with a scene with Auntie Em, Uncle Henry, and Dorothy all walking in to the auditorium and up to the stage. It helps at this point to understand the structure of the plays at our autism school. Most every child in the play is shadowed by a para, a teacher or a therapist. They will help guide them with stage direction and feed them the lines they need to say. So when I say the three of them walked on stage, it's really the six of them, the kids with their 'shadows' carrying the scripts, sometimes a bag of treats and always a boatload of patience and determination to help the child shine.

Anyway, there she was in all her blue gingham dress and pigtail glory. The first scene was a blur and then she was sat on the edge of the stage for her big number. I could see it in her eyes, the audience was a little intimidating. During dress rehearsals, there were very few people in the audience since 90% of the school personnel are up on stage with the kids helping. She fumbled through the first few lines, froze a little, got through another line and kind or hummed along with the music teacher singing along through until the end. I was in her line of sight right behind the music teacher and I was mouthing every word, trying to will her to get on track, but she never did. I was not devastated, but I'm not going to say I wasn't disappointed. I was really really hoping for this, knock 'em dead, not a dry eye in the house kind of home run moment and it was more like a curve ball first strike. Her family was all here, all the cameras were rolling and it was not what I was hoping for.

The play went on and she was having issues with her clip on microphone, it was either too close or too far, she actually scared a baby out of the audience with her loud voice. We were now in Munchkinland and we got our first look at Livie and her Lullaby League troupe. They were the cutest 4 girls on pink tights and tu-tus. Livie did her signing and turns in sync with the others and I was back on top. It's not that she was perfect, but she did wonderfully in my eyes. I slowly began to change my perspective. I had been through two or three of these shows over the past few years and I've realized that it's never about the perfection of the show, but about individual triumphs and especially the moments. I had forgotten this in all the preparation and panic. She was in every scene, she had so many lines, she was performing in front of dozens of people and working with dozens of others, she's 5! Of course she's gonna flub; it's not about perfection, it's about her making tremendous progress over the past few months.

I took a different tack from that point on; enjoying the moments every kid had. Cringing a little if things didn't go well, cringing a little more if it was Gracie or Livie, but relishing every good move or line each kid had. Grace kept having to move off the stage with the rest of the kids, then back on for every scene, and every time she came back in, she would cry in protest, yelling 'mommy, mommy' causing my wife to spasmodically sit up and sit down. But the minute Grace hit that stage, she had that game face back on and she made it through, even though we could tell she was tired of it and really wanted it over. The last lines of the repeated 'There's no place like home, there's no place like home' had definite poignancy for her, but she got through it.

They brought back out all the kids for a curtain call after the end, and even though it was an excruciatingly long time to keep clapping, it was the least I could do for all these kids and their shadows who had worked so hard. I clapped through the munchkins; the monkeys; the Lollipop Guild; a big uptick of enthusiasm for the Lullaby League; the witch and the wizard; then the scarecrow, tin man and lion; then Auntie Em and Uncle Henry. Then my little girl came walking out on her own and got one great round of applause. But it was not just me clapping thunderously, but the rest of the crowd as well. They too saw the hard work she had gone through and were sharing my happiness and pride for her. I finally got good use of that tissue I was holding through the show.

Everyone was very congratulatory as they left the auditorium and the three kids, my mother in law and brother in law went back to the house as well. They school packed up the video equipment and then it hit us: she had ANOTHER show in less than an hour! Gracie appeared to have coasted to the end of the show on fumes of patience, how was she going to make it through the 12:00 show? They had implemented this two show thing a year or two ago, because there was just not enough room for all the parents. The price was that you had a few dozen kids who may be at the end of their usable reserves, and the odds of major meltdowns were easily doubled for all.

Okay, I know the afterglow was a little too short-lived, but we had a real fear of a situation, where she would absolutely refuse to go on. We knew our child's will and if she did not want to, it was not going to happen. The second-show curse was, if not real, at least being prepared for. The school was not taping, the teacher told us she was going to walk her around mano a mano to try and decompress her, we were preparing for the worst. We sat ourselves in the front row, the two of us, 20 minutes before the show started and stared straight ahead as the crowd slowly made their way in. It was a digital clock with red numbers high on the wall, but it felt like a clocktower over the dusty wild west town; a silent gong of 12 bells as the dustdevils swirled in my head. The keyboardist was in place, the music teacher; the strains of the opening notes played and the three (six) opening scene characters came on to the stage. Gracie threw out a high pitched sing songy "Good Morning!' to the audience as she climbed the stairs that broke the ice a little, but my tension level was still maxed out.

They started the dialog for the first scene and I was biting my nails, thinking she was still not on her game, but it was not going too badly. The last line was said and Auntie Em and Uncle Henry walked off the stage behind her, and she was fed the last lines of "beyond the moon, beyond the stars" just as the music was starting and sat down... and NAILED IT! I could not hold the camera still as I exhaled and welled up. I could see her teacher do basically the same thing as Gracie continued through the song, not flawlessly, but on the Oh-my-gawd-she's-doing-it-'Ometer, she busted the gauge! My Pride-o'meter and Releif-o'meter went off the charts as well. No matter what happened from this point on did not matter. She had given me that moment I was looking for; that memory that would last a lifetime. It was no where near an America's Got Talent drop Simon's jaw to the table performance, but it sounded like that to me. The applause was not as thunderous as it would have been had the audience known the whole context, but it was still a rousing applause.

The play went on, and we were on the mark about her being tired of it all. She was having trouble keeping her eyes open during the show; which probably saved us. She was too tired for the fight and just wanted to get through it all and was very compliant. She only lost it once during the show and it was only because Livie did as well. Despite all the noise of the dozens of kids up on stage, the one cry that curves Gracie's spine is Livie's. Livie stopped crying briefly so that she could do her Lullaby League dance, after all, the show must go on. After that, Grace's teacher tried and cover her ears, but ultimately, they had to take Livie out for a break so the show could go on.

It finally was over, the last 'Oh Auntie Em, there's no place like home!' was uttered and we were in the clear. I was so proud of them both. Livie was the best bow-er in the quartet; Gracie even added one more AWWW moment when she curtsied instead of a bowed. I received my best Christmas present in a long long time a few days early; it wasn't what I asked for, but it was better than I could have hoped. Life never ceases to humble, amaze, frustrate, delight and challenge me. I may wish to have it some other ways sometimes, but I wouldn't want it any other way than it ultimately turns out. Merry Christmas

Forgive my amateur-ity...this is my first attempt at uploading a video. Sound quality is poor, and it might cause your machine to lock up, but I wanted to put it out there just the same, you know us proud papas:

Pig Science

2009-11-25T22:41:00.000-05:00

Since scientific theories surrounding autism can fly as fast an often as planes over my house landing in JFK, Laguardia or Newark, I figured I can post some of my own personal theories to help explain occurances in my daily life:

The chaos theory of multiple children:

The theory that in controlling kids, one child can go it a couple of different directions; two children, a couple dozen; three can go in a couple hundred; and four or more will drive a couple crazy...

A single sock will spawn others...none will match the original descendant...

The difficulty in finding the remote is directly related to the desiralbility of the show...

The amount of time needed to complete a task is inversely proportional to the number of interruptions experienced...

The time to teach a child a task in exponentially larger than the time it takes to do it yourself...

The time available to teach the new task is inversely proprotional to the amount of patience of the parent...the figure of patience inverse to the attention span of the child...

I have literally dozens more, but putting them into a cohesive theory expends energy better used to fight the theory of self regenerating dishes in the sink and the theory of self regenerating dirty laundry...

How About Calling Everyone a Train Wreck?

2009-11-21T10:11:00.002-05:00

Andrea Peyser of the New York Post, one of my favorite ::dripping sarcasm:: papers because it makes Fox News look like CNN (the Cuban News Network that is), posted this blurb about protests at the Autism Speaks benefit concert on Nov 17 in NYC:

Bruce Springsteen sang. Jerry Seinfeld joked. But former NBC/Universal CEO Bob Wright had harsh words for protesters who tried to muck up the A-list benefit concert he put on at Carnegie Hall on behalf of autistic kids.
"The protesters are lucky," said Wright. "They're well off enough, healthy enough, to do it. I wish my grandson were able to join them."
Wright runs Autism Speaks, which has raised over $200 million for research into a disorder that afflicts mainly children.
That didn't stop a clutch of sign-carrying adult protesters from descending on Carnegie Hall Tuesday night, trying to disrupt a concert attended by Donald Trump, Howard Stern and Martha Stewart. Protesters complain that there's not one autistic person on the board of the org, which produced an "offensive" ad suggesting that autism was a fate worse than death.
Wright, whose grandson cannot talk because of autism, said the disorder is exploding among young kids who can't speak for themselves.
"This is serious business," he said.
Give this worthy group a chance.

The little piece of journalistic relevancy our conservative journalist (isn't that a contradiction in terms?) left out is that these were AUTISTIC adults. Kinda puts juuusst a slight different spin on the story dunnit?

But over to Mr Wright, who I'm sure understands who these people were, maybe he should think about some relevent facts that his organization leaves out of many of the pushes for donations to Autism Speaks:

A large percentage of those on the spectrum DO speak.

Those '1 in 100' numbers Autism Speaks uses INCLUDE all these children on the same area of the spectrum

There are many affected by the spectrum who would prefer to thought of people to be worked with rather than problems to be worked on.

These people protesting share many of the same issues as the kids Bob is 'fighting' for. They can provide more valuable insight to these kids' issues than most others.

To tie it all back, I also noticed within the same article, there was also a picture of Sarah Palin and her child, who has Down Syndrome. I started thinking what would happen if organizations like Easter Seals, began running ads about children with disabilities portraying ALL kids with disabilities as 'train wrecks' and life-wreckers and needing more funding to find a 'cure' for all these life destroying disasters (and much less to support their existance)? I wonder how many of these 'subgroups' would react positively? Bob, there are quite a few different colors on the spectrum...and it definitely AIN'T black and white...

I have to agree with Andrea on one thing, we should give this worthy group a chance. But I'm speaking of the group on the sidewalk, not the auditorium....

A Push To Bring Change 2 Mind

2009-11-14T13:30:00.001-05:00

I was watching flicking through channels last night and I stopped on a commercial that was halfway through, but struck such a resonant chord I had to stop and look to the internet to see it again. The organization is called Bring Change 2 Mind and it is pushing to removed the stigma of mental illnesses like Bipolar, Post Traumatic Stress Disorder, Schizophrenia and Depression.

View the largest of the pictures to see the PSA (Directed by none other than Ron Howard and also poignantly featuring Glenn Close and sister). I saw so many parallel to what many of us are trying to push about the stigmatic language often conveyed about the autism spectrum. When I read these T-shirts on the people in this spot, I realized in retrospect that I have a visceral reaction at the mention of many of these disorders, almost an abject FEAR of people of people with these disorders. With my comparatively new view of neurological disorders, I have slowly come to realize that my perspective has been tainted throughout the years by sensationalism, ignorance and the general atmosphere that mental issues are NEVER spoken of in society, unless you are in some inner circle.

Hopefully, organizations like Bring Change 2 Mind will drag the mental health issues into a bright light, where we can examine them with an objective eye...

Playing "Beat the Friggin Clock"

2009-10-12T23:30:00.000-04:00

I'm sure I'm dating myself, and I'm sure I'm being a little too esoteric with this, early 70's, young lad addicted to daytime TV reference, but does anyone remember "Beat the Clock"? The show that had people trying to complete stunts within 60 seconds, that at first, seemed somewhat difficult but doable in the time frame, until the announcer pulled out the crazy twist, like doing the stunt in scuba flippers? Even if you never saw the show, you get the idea; but I think that God was a fan, fancy's Himself a game show host, and it seems I am the latest contestant.

Or maybe He thinks he's producing a reality show, or thinks He screwed up enough and wants to take over Punkd with 'regular' people. I just feel like I have been in several TV shows this weekend, and I ain't gettin no consolation prize either!

It started on Saturday morning. We were invited to the Autism NJ Conference to help man the booth of Livie and Grace's school. We thought it would be a good idea; we'd talk to a bunch of parents, hopefully help a couple find the school that we love so much, and maybe make some connections, learn a few things. Things didn't turn out as expected: Most of the people we talked to were fellow 'exhibitors'; not too many parents around. The speculation was that it was a combination of a lower turnout due to the economy and the larger representation of the more 'regional' autistic schools like ours attending.

The school representative decided to call it a day around noontime; and so began God's version of Punk'd. The school rep had a lot of stuff to get back to his car and pulled it to the loading dock to try and sneak his stuff out the backdoor rather than making the long journey around through the hotel lobby. He had two large display cartons, about 3 feet wide, four feet high with rollers on the bottom to roll them behind you. I followed behind him as he went through the curtain partitions dividing the exhibitor area from the large area behind it where the 'behind the scenes' area for the convention center was. The rep went through without a hitch; I followed him without a second thought. Two things combined: MY carton got caught on the curtain and I realized that these dividers were not really tied down at all. As I slowly turned to try and untangle (you know how God just LOVES to put the slow mo on in these situations), I watched as the two poles holding up the curtains begin to teeter and topple. But the gravity of the situation didn't stop there. As I brought my head up from the detail of the two poles falling, I realized that ALL poles had the same potential. Imagine, if you will, each pair holding 12 feet of black curtain; three more to the left and some 10-12 to the right; then, a right angle and 12 more poles. My only hope was that God was taping this and he would share; I didn't notice the three to the left fall. I was watching the domino effect to the right as two fell, then four, then five. It got to seven and thank God He didn't take the joke all the way; it stopped as the last pole hit a table and the nightmare stopped.

I got a few cheers from the exhibitor peanut gallery; glares from the staff as I choked out 'sorry' and moved a little quicker to cover the 30 yards to the loading dock. When we got back to the booth 10 minutes later, my wife took one look and said "That WASN'T you was it??" I hung my head as I nodded.

The 3 hour drive round trip; the 12 bucks parking, all that to talk to a handful of parents for 15 minutes and learn new things about NJ's new Autism Registry program, and a whole heaping helping of embarrassment. Not exactly what I had envisioned for the Saturday. Once God posts the YouTube, I'll let you know.

But the shows on Almighty's Comedy Central just kept on coming. Up next: Beat the Clock. I'm your announcer, Saint Peter and now the host of

Beat the Clock, Wing Yahweh. Hi folks we have great show today, let's bring out our first contestants: Bill and Linda. Bill's an overworked virtual janitor; Linda coordinates life for 5 kids and therapies for two of them who are on the autism spectrum. Pete, tell them what their challenge is....Yea, Yah...their challenge for Monday is: Get pictures taken at JC Penney of the ENTIRE family, brought to you by JC Penney...YOUR portrait studios, back to you Yahweh.

OK, Bill and Linda, sounds like a tough one, but you guys seem pretty adept at handling these situations. I'm afraid we're going to have to make it a liiiitle more difficult. Bill, you wanted to take the whole day off, wellll, we talked with your employer and you'll have to go to work afterwards because too many people are going to be out on Monday. OK folks, we'll start the clock on Sunday afternoon, you have to get outfits picked out and have these kids primped and ready for the appointment on Monday at 10am.

While they get started folks, we have a liiittttle surprise for them that St Pete's going to tell US about but not THEM. That's right A.Y., our little surprise is that we've broken their hot water heater, that's brought to you by GE, the FIRST name in water heaters when you're on your LAST nerve. Thanks Pete, let's get to the action: the boys have just informed dad of the flood in the garage; he's assessing the damage, he's discovered the leak. He's telling Linda now aaaannnd...let's go to a commercial break while they gather their sanity, THIS commercial break brought to you by XANAX.

We're back and the action is fast and furious. Bill's looking for a bucket and mop; Linda's calling the HVAC guy who's coming to clean the furnace tomorrow. What's this? Bill's using a LITTER box to drain the water heater! And in a stroke of absolute brilliance, he has found an old case of hospital pads they had used when Livie was in her toilet training phase. I guess that little sponge mop was not going to work very well. Linda's got the number of a good plumber who's watching football right now but will get back to us. Bill's on the third package of pads. It looks like they've got the emergency at hand...or do they?

Eight people, two showers, scratch that...ONE shower, the other doesn't work with the hot water off. Let's see what they do. I don't believe this, he's boiling WATER, he's going to use it to give the girls a bath. They get through the baths, and the oldest even uses the water for her bath too. Amazing, I think they're going to get through this, one more obstacle...THE MORNING. As they go to sleep let's take another commercial break...brought to you by Captain Morgan Spiced Rum.

We're back, it's 7 am Monday and it's time for the SHOWERS. Listen to Bill squeal and that cold water hits his body, now the boys, now Linda. They've got everyone out,the clothes are on, some minor sock fashion emergencies; the color coordination is NOT going well with the grandmother, but she FINDS and acceptable brown dress to match the rest of the family. How's their time look, Peter? Well Yahweh, they're getting out the door 15 minutes late, it's not looking good. They've called the studio and there is another appointment coming in at 10:40...it doesn't look good.

Thanks, Pete, lets get into the action, they're taking 3 cars so that Bill can take off right after this...and they make it to the studio at exactly 17 minutes after 10. This is not looking good, the studio is trying to offer them a fill in around 11 or 12 if someone doesn't show up. It's getting a little heated in there, Linda's saying they still have 20 minutes left on their appointment and what's this? She's pulling the autism card, yes she didn't think she would have to use it until the woman was trying to take pictures but she's asking for mercy and pleading that she'll only have pictures of the kids taken and...they...ACCEPT, we're going to have to get a ruling on this Saint Peter, it's not what they were supposed to get done, what do the judges say? Well Yahweh, I'm going to have to defer back to you... you're the boss. Oh yea, right...OK we'll let it ride and see where it goes. These guys are pros and they're getting through the sitting with not a tear; group shot and the three girls even get individual shots done.

Bill's taking the 5 kids into the mall while Grandma and Mom pick out pictures and...it goes off withOUT a hitch! A carousel ride, an early lunch, Mom calls back and THEY ARE DONE! Time, Pete? The time is 11:55.... they've DONE it folks! Tell 'em what they've won Peter.

Bill, you've won an hour and 15 minute commute to a crazy afternoon at work. Linda, you have repair men traipsing through your house for the rest of the day. But BEST of all...more than a DOZEN pictures of your precious kids who actually looked good in the photos. Thanks for playing Beat the Clock, we'll have them back next week for fall cleanup and winter clothes changeover. I'm your announcer, Saint Peter, for God and me...have a great day and a great time playing your home version of Beat the Clock.

Oakies

2009-10-04T23:30:00.002-04:00

I crossed paths with a Texan today, who was looking to relocate to the NY/NJ area to find better schools for her autistic teenage son. It disturbed me that I had no good answers for her; and it was somewhat heartbreaking to hear of the tribulations she needed to go through to even get a district to give information, let alone, let her view their school.

It struck me driving home, how much we have in common with the Okies during the Great Depression of the 1930's. For those of you unfamiliar, people from Oklahoma during the period, we fleeing a decade-long drought in search of a new home and work. They were met in California with contempt...and sometimes violence.

We escaped from our OK in 2005, that was less than a 100 mile migration. Many many parent I've heard move in the same way; many much much farther, with little more than innuendo of a 'better place' where the educational streets are paved with gold. I'm not sure how to solve it; one of my clones would surely set up a website where parents could rate and ask about school districts and their abilities and willingness to work with special needs children. But there will always be those 'true Californians' who will try and stop all these 'special needs Okies'. We need a better way.

Meanwhile, as a true Okie myself, all I can do is help any overstuffed minivan passing my way with an 'autism awareness' bumper sticker to get to a better place...

Autism Sells

2009-09-23T23:59:00.001-04:00

I originally thought that I could write a thoughtful, serious parody of the new Autism Speaks PSA, giving it a more reality and less of an "Invasion of the Body Snatchers" feel. But after I realized my biggest beef with it was it's blatant use of fear to 'sell' it's product; I just turned it in upon itself. If you compare the original transcription (Thanks Cody, for making my life easy), you can see how eloquently simple the needed changes were and how eerily fitting it becomes:

man: I am Autism Speaks. I'm invisible to your autistic children, but if I can help it, I am visible to all you with a checkbook. I know where your guilty conscience lives, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, but I KNOW currency. I speak that language fluently, and with every voice I take away, I acquire yet another dollar. I work very quickly. I work faster than those funding pediatric AIDS, cancer, and diabetes research combined. And if you are happily married, I will make sure that you fear your marriage will fail. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don't have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don't exist, of course, until it's their charitable donation. I am Autism Speaks. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am Autism Speaks. You ignored me. That was a mistake.

woman: And to Autism Speaks, I say...
man: I am a father...
woman: A mother...
woman: A grandparent...
man: A brother...woman: A sister...
man: We will spend every waking hour trying to weaken you.
woman: We don't need sleep, because we will not rest until you do.
woman: Family can be much stronger than Autism Speaks ever anticipated, and we will not be intimidated by you...
woman: ...nor will the love and strength of my community.
man: I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
woman: Autism Speaks? You forget who we are. You forget who you are dealing with. You forget the spirit of mothers...
all: ...and daughters, and fathers, and sons, AND AUTISTICS...(crosstalk: several people calling out "We are" and the names of different countries)
all: We are the United Nations.
man: We are coming together in all climates.
woman: We call on all faiths.
woman: We search with technology...
woman: ...and reality...
woman: ...prayer and...
man: ...logic...
man: ...genetic studies...
woman: ...and a growing awareness you never anticipated.
man: We have had challenges, but we are the best when overcoming them.
woman: We speak the only language that matters:
all: Love for our children.
woman: Our capacity to love is greater than your capacity to overwhelm.
woman: Autism Speaks is naive.
woman: You are alone.man: We are a community of warriors.
all: We have a voice.
woman: You think that because some of our children cannot speak, we SHOULD NOT hear them? That is Autism Speaks’ weakness.
woman: You think that if you say my child lives behind a wall, I am afraid to say differently.
man: You have not properly been introduced to this community...
all: ...of parents and grandparents, of siblings and friends and schoolteachers, therapists, pediatricians, scientists AND THOSE ON THE SPECTRUM.
woman: Autism Speaks, if you are not scared, you should be.
man: When you came for my money, you forgot:
all: You forgot about autistics.
woman: Autism Speaks: Are you listening?

Wow, I'm Slipping!

2009-09-15T12:47:00.005-04:00

Holi Canoli! I turn around and more than a month and a half has passed since my last post. It's not like there has not been material in the past 45 days, but most of my good ideas occurred inside my head, often as I am drifting off to sleep. I guess I could do a Twitter version:

Vacation, late August...3 day trip to Cooperstown to relatives...I had entire posts in my head on generational frustrations of showing historical baseball in the hall of fame to boys who seem to care-less. My one liner to them "my only satisfaction is that you will be in this Baseball Hall of Fame 25 years from now with YOUR boys pulling your hair out because they won't listen to you about Derek Jeter!". Also, baseball players, despite the exorbitant salaries, have it kind of rough: 162 games in 183 odd days, half the time away from home and travelling to dozens of cities otherwise...I'd want at least a million a year for that too...can you imagine the minor leagues and those players' love for the game?

Back to school- wow 5 kids, three new schools, new schedule, paperwork in quintuplicate (filling out an entire pile with the wrong kid's name), school supplies, oldest child in HIGH SCHOOL (lines on my face gettin' clearer).

Ableism- wrote a long poignant piece in my head last night on society's desire to indoctrinate to reward 'the best' and not 'the best you can do'. Comparisons against others and the old, almost instinctual 'pack mentality' to rank from high to low no matter what group you are in is something that is hard to fight; even in the disability world. How do I as a parent know when I push for progress for my daughters future's sake and not for 'progress for progress' sake'? So much of the post was lost when Gracie kicked me in the head in the middle of the night...

I can't promise that I'll be back into a regular posting schedule over the coming weeks, but I will try and stay up an extra half hour on occasion, to get the ideas out of my head and into the I-ther...

Wright On!

2009-07-30T22:13:00.000-04:00

Linda and I took a day off today, so to speak, and journeyed to the land of Washington Irving to Mercy College in Dobbs Ferry NY. Of course, days off that don't directly or indirectly involve our kids and/or autism are very rare, today was no exception. We attended an all day conference on Wrightslaw Special Education Law and Advocacy, to all you parents of special needs kids, I would highly highly recommend it. You receive two books and an all day talk with one of the founders of the Wrightslaw website, Peter Wright Esq. (but don't hold the lawyer title bias you, he's really a nice guy). Breakfast, Lunch provided...all for $100 for BOTH of us... how can you go wrong?

If you've never been to the Wrightslaw website and you have special needs kids, time to leave the cave. The resource is truly amazing and Mr Wright was quick to point out that kudos for the incredible information provided should go to his wife Pam. Again, if you have special needs children, I urge you to go there; if you have ever had ANY problems with your local school district, I demand you go there. If you are anywhere within the areas where he is giving this one day course or the two day intensive 'Boot Camp', It's money and time well spent.

I guess in retrospect, it's not that you learn all THAT much from the seminar over what I could have done researching on the site fro 8 hours. It's more the inspiration and the fact that you are forced to think about it all day, not to mention all the great ideas that pop into your head as you listen and review the details of special ed law. We also already had both books (Special Education Law and From Emotion to Advocacy), now I have my own copies!

Level 5 in the Game of Life

2009-07-22T13:00:00.000-04:00

I had another one of those epiphanniac aneurysms last week. I was putting together a 'big wheel' while giving a piggy pack ride to a child as I was mediating an argument between two others, and I realized that simple tasks are still simple, but new barriers are thrown up to make them more challenging. I sometimes feel like I'm Mario and God's got me up to level 5 and seeing if I can handle the extra Koopa Troopers. The game is still the same, it's just that there a so many fun new obstacles in the way.

Economies of scale last week that I had to put together 3 Big Wheels (two for the girls, one for their school). Fly by night internet company seemed to combine three different genres of Big Wheel styles, so the last one I put together wound up with West Coast Chopper graphics and a pink seat. Luckily, I don't think Livie minds being a biker chick. Anyway, all this assembly is occurring with kids fighting and the girls running around, looking to have fun. Livie is now wholly obsessed with getting piggy back rides from me. I created a sign for 'ride', grasping two hands together and pushing them down. She will climb behind me on the couch and put her arms out in front of my chest and do the sign; this no matter what I am doing (this morning at 4:45 am, since she was wide awake, she decided that a ride should be the first thing I should do in the morning). So in between bolting things together, I am taking breaks by riding her around the house. Gracie also likes to get rides, but Livie turns into the Green-eyed Monster and tries to stop Grace from making the attempt.

Yesterday, I was ambitious enough to tackle the 'sock basket from hell', our laundry basket which we put all our mismatched socks. It hasn't been fully attempted in about 4-6 months, and lately everyone has taken to trying to find a match ad-hoc when they were desperate. The basket was beginning to spill over and it was probably pushed down several times so this thing was packed with probably 2-3 bushels of every sock imaginable. God had fun playing the 'sock room' with me: throwing arguments, bathroom emergencies, dinner and miscellaneous challenges in my path. I did complete the task though after about 5 hours. I am quite proud of the final tally:

Total pairs matched - 209 (PAIRS not socks)

Total unmatched socks leftover- 127

Total permanently orphaned, holy or two small socks thrown out- 25

Miscellaneous winter hats gloves and doll clothes- 17

Do you suppose I can get an additional 'life' for all the 'points' I collected in that world? Of course, my theory of spontaneously generating/mating of household objects held true. After finishing the job and having just socks leftover in the basket, not 10 minutes later, I looked in the basket to find a completely bizarre winter glove on top, black with purple fuzz; those frisky little socks!

Birth of a Blogger

2009-07-20T18:49:00.000-04:00

It's always a miraculous event when a virtual person emerges from the womb of message boards out into the 'real' world of blogging. Commenting on message boards is somewhat anonymous and you can become lost in a chorus of people and your words become part of a heap of other personalities. But when you blog, YOU are the sole dictator of what gets said and you set the tone an tempo with what you have to say. You can touch lives without even realizing it, in places you never even heard of, in ways you could not fathom doing in person, and it's all you.

To speak in generalities on blogging, I recently came to a sort of bizarre epiphany. I was thinking about what happens when a person stops posting on their blog. You really have no idea why they stopped: ran out of things to say, lost interest, died. Died is where I came to the interesting dichotomy. I have a passing interest in the macabre hobby of old cemeteries. When you visit a persons grave, you usually have all the vital statistics of a person of exactly when they were born and died, with little but clues as to who they were and how they lived their lives. Conversely, bloggers get into great details sometimes on their view and personal lives, then can disappear into anonymity. Closure is something that rarely seems to happen in the blogosphere.

But I guess the internet and blogging are not going to be a great places for epitaphs for the masses; your virtual life just gets washed over by the flood of information and eventually just gets 'buried' into an archive. A few years ago, after my aunt's passing, I began googling her name and other meaningful things in her life. She had a friend who had predeceased her and I googled his name. I had always known him as loving music, even though he was a dentist. I came across one hit that link sent me into a message board where a person was going into great detail about a coronet (trumpet) he was trying to sell and how it was his dentist's trumpet. He talked about how all the jazz musicians in the 50's in Hackensack NJ would congregate in his dentist's office and play music. He wasn't explicit, but I wonder whether my aunt's friend hung out with people like John Coltrane and Miles Davis (who recorded a record or two in Hackensack). All this is academic now, because the link no longer works, the coronet was either sold or remains in someones attic, and the story is transient and gone from all but some obscure server in some obscure college which probably was erased or archived never to be seen again.

Where was I going with all this? I'm sorry, I was introducing a new blogger to the ether. Her nom de keyboard is Age- a Jersey girl with a lot to say and hopefully won't read into my post as anything but a rant, the impacts of blogging are immediate and far reaching. While the distant future for everyone on the planet is death; what we say and do can have impacts far beyond our own lives. Good luck and make a dent in the real world with your virtual voice.

http://www.autieage.blogspot.com/

Hey Ed...I Love You

2009-07-11T19:58:00.003-04:00

Forgive me for hijacking my regular posts to answer someone who has gravely misunderstood me. I have endeavored in the past few days to raise awareness on legislation before the US Congress to require insurance companies to cover various therapies normally in use for autistic children. It happens to be something that is very important to me and my family; since occupational and speech therapies for my two daughters runs into the thousands of dollars every year. I have been on a couple of blogs on Autism Hub to discuss and debate the issues and points of conflict with the use of therapies, particularly ABA. Which brings me to Ed.

I posted comments on his blog to discuss the particulars of my position and it appears to have gotten out of hand and I am now banned from further discussion. Hence, the reason for my post. I just wanted to say that, if my comments offended you, I am sorry. My desire to understand and empathize with those living on the spectrum is not only genuine, it is a matter of necessity, since I am, by proxy, responsible for trying to understand the needs of two young children on the spectrum.

I'd really like to go point by point why I feel you have gotten me all wrong, but I'd rather just say, metaphorically speaking of course, I love you man. I have to love you because you represent a possible future of my daughters; albeit a radical one, but one where they will be self determined.

I will not be seeking any further dialog, unless initiated by you...I wish you well...

Compounding the Problem

2009-07-06T11:53:00.000-04:00

As previously mentioned, we've been battling a Decepticon called Streptococcus, which invaded my daughter Livie almost two weeks ago, then finally showed it's true form in me over the weekend. On top of that, one of his little minions, Otitis Media, tried to further transform my weekend by taking residence in my youngest, Gracie. All three of us are now under the care of the anti-bot Augmenton. Unfortunately, Livie's mind is being controlled by this transformer, to the point where cannot rely on a frontal assault and we are going to have to attack from the rear. (Sorry, for those without preteen boys or not into mindless action films or complicated plastic toys HERE is a little background to the analogy).

Reality is that Livie's more than week long ordeal with the strep throat has left her very punchy as to what gets passed her gullet. She is thankfully eating and drinking now, but has taken great pains to not letting anything that does not meet her strict criteria of delicious passed her mouth. Unfortunately, this includes all the great thing she needs, like ibuprofen and most of all, antibiotics. She had been doing pretty good over Friday and Saturday taking the antibiotic twice daily; then on Sunday, she began to hold the medicine in her mouth. We used every sleeve to find tricks to get her to take it: hide it in applesauce; hide it in liquid; use an upcoming meal as a carrot to get her to take it. We tried one more time on Sunday night and finally gave up.

You really cannot get anyone to swallow something if they don't want to, so you have to find another route. I'm very surprised that more doctors don't know about the idea of compounding pharmacies. Our doctor here in Monmouth County is interested in getting information about the closest compounding pharmacies in the area. Apparently autism isn't the only area where oral medications are refused! A compounding pharmacy can put many prescriptions into a suppository form. Of course, as per usual, this comes at a cost; and of course, there is no 'insurance code' to get the cost reimbursed. Just another one of those pain in the aspirations to get insurance to recognize and cover real medical needs.

Back to work today and reflecting on a semi-hectic holiday weekend. I did get in some fun (defined as prolonged periods of staring at cooking food on the grill whilst holding a 6 or 12 stringed instrument or adult beverage). But just like the adage that it ain't a party 'till something gets broken; it never seems like a holiday unless we are scrambling to a doctor, pharmacy or drug store...

The Human Petrie Dish

2009-07-02T22:51:00.001-04:00

Ah, back onto medical issues...
We are feeling horrible today because Livie has most likely been living with strep throat for the past week. It started last Thursday when Livie had a fever, rash, mucous on the back of her throat and a coating on her tongue. All these are classic symptoms for strep and Linda wanted to set up an appointment with the doctor. "Bill, can you take off or even a half day today?" She said with almost desperation in her voice. I had a two day training class that, practically could have been missed, but politically would have been career suicide to miss. Linda, talked to the doctors office and found out there was going to be an intern as well as the doctor. Perfect, another set of hands. She took Jason just to stave off WWIII at our house if we left the three fates alone together.

I guess I should explain, like most of us, Livie does NOT like to get throat cultures. Unlike us, she takes a throat culture and an imminent death threat, and she needs to be restrained. Linda, Liv and Jason set up in the examination room and the intern steps in. First mistake...Livie gives her a sideways glance to say "I don't know you, you don't know me...prepare to be thwarted". Livie was tentative but cooperative toward the intern. Then her normal doctor came in and Liv did her babble she reserves for people she knows. More standard business then, the moment they've all been waiting for, the SWAB. You really need 4 people for the swab: one for the legs; one for the torso/hands; one for the head and mouth, one for the deed. The intern turned out to be too tentative for the task, she did not seem comfortable restraining a child, Liv saw right through th weakness and to0ok advantage. By the time they were finished, Jason had jumped in on the legs and Linda had the torso, arms AND mouth. It was not a good scene.

The test came back negative, and we were left with the prospect of a viral infection. Livie was not swallowing much and was frequently pooling her saliva because of her supposed throat pain. This continued through the weekend and into the next week. We were under the impression that she was working off of a fear of still having a sore throat. Then came my part in this play.

I was just not feeling well on Wednesday afternoon at work. I came home that night to discover I had a fever, body aches and a sore throat. I had come down with this virus. Thursday, I called in sick and Linda saw my sickness as an alternative to bringing Livie in to the torture table again. I went to the local emergency care and got myself swabbed. “You got kids?” the doctor asked. “Yea, lots of them.” I said. “Well, one of them has given you strep.” He says.

Oh boy…that poor girl has been fighting a strep for more than a week. We took her right away to the doctor, and I filled in the anchor of holding her torso and hands and we had a much easier time getting a sample, and of course, if came back positive. Now the biggest problem is going to be getting her to take the medicine, we may wind up having to have it compounded into a suppository. Oh JOY, that will be an adventure…

Outfitting an Army (W update)

2009-06-27T22:00:00.000-04:00

Our family is scheduled to go to a very special event next week, specifically one of my nephews is go to be bar mitzvah-ed, or more properly said, going to become a bar mitzvah. In either the vernacular or the proper however, it is a BIG deal. So, being a family member of the guest of honor, we have to make sure we are dressed to the nines (where'd they get that phrase anyway?) . Problem is, our family is usually dressed to the two's, we might hit the fours or fives on occasion; but nines require us to get out there and spend some real numbers in time and money.

First let me get through the logistics of the day. We opted out of having neither the girls nor the congregation nor ourselves endure the girls endure the ceremony. So we just have ourselves and the three kids (hopefully all three). My mother in law will watch them while we are there, that is, she'll watch them if her back is able. She has been having relapses of an old back issue, and with Livie being, shall we say, physically difficult of late, we are scouring the area without much luck, for someone to ride shotgun in the house while we go. Right now, it looks like we're going to have to at least do something about the party afterwards. We'll probably leave Gracie home and take Livie.

Okay, we know HOW we're going to do it, but now the inevitable question...WHAT TO WEAR? I'm the only one in the family who remotely has any level of dress up stuff, but even though I work in an office, we are 5 years into a daily dress down policy. I hardly think my 'Autism Awareness' golf shirt and khakis are gonna work in this situation. The 3 older kids, forget it. We need to go to the store if we need a white shirt for a choral concert. Livie and Grace my have a decent outfit or two. Linda's last nice outfit was the wrong season. So we have a 6 alarm fire that need to be put out.

I am first. Since life has not only seen me accumulate experience and battle scars, but also has physically accumulated on me, I can no longer count on major retailers putting on major sales to have sizes in my 'major' category. I love all those euphemisms for large: Plus size; the oldie but goody 'husky'; portly; women's sizes; big and tall, I'm sure if I actually went into stores, I could find a dozen more. My latest encounter was at Men's Wearhouse where I was declared an 'executive' size. Yup, I'm moving both up AND out in this world. What if I get any bigger? Am I then a VIP size; a presidential size...I guess they'll just stick with good ole' King size. Good experience from that place, from suit to tailor to shirt to tie....I'm set.

While Dillan's height has gone up, it's all just more beans on the pole; he has gotten use out of his last suit for three times counting this event. His 'difference' is in his shoe size. He's pretty much starting out in men's sizes, yet his feet are what they call narrow. He flopped out of the dress shoes we got off the internet, and we had to search out narrow sizes on Amazon. I honestly don't know how they did it before the internet. I guess that's one of the reasons society shunned those who were 'different', and maybe part of the reason society's getting wider, since strange sizes are now a click away. Heck, if I were a parent back in the 70's and I knew I couldn't find sizes for my kid, I would have stopped feeding them until they were back 'in range'.

Jason had proved even more a challenge. One suit we bought wound up being tight around the waist and we finally scoured all over the real and virtual earth to find something that A) fit; B) He liked and C) did not clash with Dillan's suit. By clash I'm sure you realize that means 'is NOT the same'. If you talked to them, being dressed at all similar would mean the equivalent to a personal Armageddon.

The 'other' two girls, Linda and Aly took to the malls over the weekend to finalize their ensembles. All I can say is THANK GOD I did not have to sit through that. I used to go out with Linda to the mall when she went out clothes shopping. Note the phrase 'USED TO'. No offense, but you women shop differently than men. It's true, and it's been 'scientifically' validated. Men hunt. Me lookum for 'XX '. Me kill (buy) 'XX'. Me go back to cave. Women 'gather'. They stroll the 'fields' looking for berries (bargins). Result: more berries than we can eat and WAYYYY too much time spent looking for the most ripe ones. Alright, men do miss lots of plump berries carrying their kill out, but that's the price of being king.

Okay, Saturday will tell whether we can pull it all off. We have 6 new outfits (well 5, with Dillan having a new shirt and tie). The next challenge is whether these nice outfits can survive 8 hours of our family. My bet is that at least one casualty; maybe one 'death' and one that will require major surgery. Mazel tov, Alex...

Update:

We made it to the Bar Mitvah, well most of us...

Livie was sick this week with some kind of weird virus and she seemed to have a sore throat and she's been very clingy. So Linda wound up staying home with Livie. The 3 older kids had a bang up time at the party...to the point that they were requesting when the NEXT bat mitzvah party was. When I told them that there was no prospect of a bar mitzvah in our immediate family for more than a dozen years; the idea of conversion to Judaism seemed a viable solution to them.

We were heading home and we got a call in the car from homebase, requesting supplies from the local Stop and Shop. With the four of us fully dressed, and a supply of fun stuff from the party (goofy hats, glow stick chains, sunglasses etc) I saw an opportunity for fun.

I had the boys put on their jackets and sunglasses from the party, and with my jacket on and aly in her fancy dress; we went into Stop and Shop as an entourage. Jason and Dillan had fun playing Secret Service agents; checking aisles for dangerous characters and potential explosive devices. We had the checkout clerks in stitches as they saw Joliet Jake and Elwood Blues go by. The way I figured it, when was the NEXT time we would have the chance to have fun in full regalia? Halloween?

Middletown in Monmouth/ IMPACT OASIS Pull it Together

2009-06-25T22:37:00.000-04:00

I know it's probably small news in the whole scheme of the autism world, but I'd just like to give a big fat kudos to the state of NJ, the township of Middletown and most of all, to those innovative and hardworking group of people in the town who go by the name of IMPACT OASIS for pulling off the purchase of a 26 acre tract of land that will benefit the community in so many positive ways. For the town, they provide much needed open space. As an added bonus, they secure a place for autistics transitioning into adulthood to gain a sense of independence by providing a place to work, live and contribute.

17 acres will still be preserved as open space, but the remaining 9 will be used as farmland to create a working farm and community with autistic young adults at its center. IMPACT OASIS has been working on this deal seemingly ever since I moved down to Monmouth County, I am proud to say that they have realized their dream.

What's almost as impressive is the deal they struck. they had $900,000 of their own money; there was $250,000 from NJ/NY Baykeeper $200,000 from Monmouth Conservation Foundation and a stunning $1.55 million from the township. A bargain for all involved! Thanks IMPACT OASIS for following your dreams and making it a reality. Read more from our local paper, this is a program that I hope could be duplicated throughout the country.

A Highpathetical

2009-06-09T21:11:00.001-04:00

This is a hypothetical conversation in a hypothetical speech therapy office between a hypothetical mom of an autistic 7 year old girl and a hypothetical grandma of an autistic 5 year old girl:

Grandma: I'm just not sure why she's waking up in the middle of the night. We checked to see if she's had a fever, she doesn't have any tooth problems, upset stomach, she certainly can be having any bad dreams.

Mom: Why can't she be having bad dreams?

Grandma: She doesn't dream, our doctor says she doesn't dream.

Mom: Of course she can dream, she just can tell you what the dream was about.

Grandma: Well, that's not what the DOCTOR says.

Mom: I mean, she could have been dreaming about her mommy leaving or something.

Grandma: Oh she doesn't care whether mommy there or not, really she's only living in the present, she hardly reacts when my daughter comes home.

Mom: It's not that she doesn't miss your daughter, most often, autistic children will just not be able to express it; they often have a very difficult time with communicating emotions and the 'outside' world has trouble reading the signs when they are trying to communicate emotion. You know they do a lot of work on things related to the kids having trouble requesting things that are not visually present. I have no idea of her progress on the ABLLS or what's in her IEP, but it's something that you might want to look into.

Grandma: Oh, I don't know, it's just all so complicated...sometimes I just wish they'd just stop pushing her and give her what she wants. It's like...when she wants to go out a door, she stands in front of it and cries...and they FORCE her to sign to go out, and she can cry for 5 or 10 minutes before she does it...it's terrible!

Mom: They're just trying to get her to use language, if they continually give in and let her out when she cries, she learns that if she cries, she gets what she wants. This way, she learns to communicate the things she wants.

Grandma: Here comes my girl, I'll see you next week.

Off Grandma walks, with her Autism Speaks T Shirt, and a child who desperately needs to be understood.

Now...I am certainly glad this is a hypothetical situation and that I had no real-life basis for this conversation. While, I could half-expect this coming from someone who does not live within the rainbow of the spectrum; it disturbs me that this conversation, might an most likely does occur all across the US and the world every day. Folks... in short, I think we are not doing a good enough job conveying the needs, desires and capabilities of those on the spectrum, ESPECIALLY, those who are unfortunate enough to not be able to express themselves well, or not at all (in the conventional sense anyway). I'm not sure we are going to be able to change the minds of those outside of our comparatively little circle if we can't change the hearts and minds of those within it.

Please try and convey to all those you touch that, while autism may appear to be a shell, there is a living, breathing, THINKING, emoting and deserving human being on the other side of that diagnosis...limited only by their abilities, desires, ambitions and perseverance...and yours.

A Connecticut Library's in Queen Livie's Court

2009-05-30T00:46:00.002-04:00

The original title of this post was supposed to be Grand Central Station because life just seems so busy. The culmination of that week's madness was our journey on the Friday before last. It's been several weeks since then and the roller coaster effect has somewhat worn off, but the memory lingers.
To start back even further, several months ago we received word that something Livie did for her art class was chosen for some kind of international kids' art exhibit. "Great, we said, what does it look like?" we asked. "Sorry, but it went on tour to Washington D.C.. Humina humina wha? MY little girl's artwork is hanging somewhere in DC? No friggin' way! This is going to be one of those buy-the-picture-book-for-$100, right? I mean, she's non verbal and she really doesn't like to draw. We'll just let it slide and maybe we'll shell out the cash.

Fast forward another month or so and I get a call from the principal. "Bill, they're going to have an exhibit of the works in Connecticut, and we have an invite for the artist and her family, would you like to go?" Another Ralph Kramden disbelief noise came out of my mouth, but my wife and I agreed to go.

Another flash forward to a few weeks before the show. "Bill?" Linda calls from the other room
"I gotta make that call to confirm that we are going, and we can get pretty much as many tickets as we want, Aly and Jason want to go. Whatdya think?"
"Three kids in a minivan, all the way to CT, whatdya think I think?"
"I'll get tickets for them too." she says...more than 20 years married, you'd think she'd get my meaning from my tone of voice by now.

One more time tick to the week of the show. Linda is flat on her back with some virus. "If this last until tomorrow, I definitely won't be able to go." "Come on," I pleaded "the vomiting isn't that bad, you don't HAVE to sit up in the car." I really didn't want her to miss this show, it had NOTHING to do with the abject fear of being stuck in the minivan with three kids for more than 3 hours.

The day arrives, the morning leaves no doubt that I am on my own on this journey. Alright, lemonade it is, make mine a double, make the best of it. Google map clocked it at 1 hour 50 minutes, pre party starts at 5:30, presentations begin at 6:30. We'll leave at 3:30, have 10 minutes for some minor traffic, heck, worst case scenario and we hit an hour's worth of backups, we'll get there 10 minutes before the ceremony.

First hour on the road goes off without a hitch, we hit the approach to the bridge (for those who know the NY/NJ tri-state area, you are already hearing the ominous music)...traffic stops. The sign up ahead flashes (delays: 35 minutes across GWB upper level). Shoot, I forgot the sugar in the lemonade. Aah well, we're still 45 ahead of schedule for the ceremony, what more could go wrong? (Again, you tri-state area folks are closing your eyes and shaking your heads) What could go wrong...on the George Washington Bridge? To the Cross Bronx Expressway? To Route 95? On a Friday afternoon? No...speed...above...25...miles..an..hour...

Anybody who has had the pleasure of being on the Cross Bronx can appreciate this next one. My daughter is starting to complain. "Can we get off and find a bathroom?" Aly asks somewhat urgently. " "Aly, look around...this is the land of ONCE ..." pointing to the free advertising written in spray paint on the underpass. "we are NOT getting off on any exit around HERE." 20 minutes later, the urgency has turned to pleading. "PLEEEZE dad? I really have to go!" We're just getting on the 95 turnoff around the Throgs Neck (or was it the Whitestone) Bridge. "Dadddd, pull OVER, I'll pee on the side of the road, I DON'T CARE!" Next exit, I get off and do my best French Connection imitation through the residential section of Pelham Bay. We finally fin a corner with a pizza place; I park next to a fire hydrant and send her in. A minute late, she's back "PAYING CUSTOMERS ONLY..." I have just 2 bucks in my wallet and I throw them at her, Jason goes in with her. 3 minutes later, they come running out. "Dad, take off!" she says somewhat panicked. Already in my Popeye Doyle mode, I execute a wild U turn and head back toward the highway. "DaAAD! the cheapest thing in there was like 2.50! We said we would by something when we got out...we took off after I got out of the bathroom!"

Back on 95...traffic finally begins to break up a little. Maybe, just maybe, we can make it by 6:30. WELCOME TO CONNECTICUT ...ENJOY THE...backup. 8 miles away from the exit; 10 minutes to the library after that...time 6:15. No way we're going to be on time. 6:35...we hit the exit and I switch to my innate sense of direction (no, really...I DO have an innate sense of direction, I did NOT get lost).

We arrive in the parking spot at 6:47; into the library at 6:49. Aly takes Liv to the bathroom, it was a certified MIRACLE that Livie didn't have an accident. I scope the presentation ceremony. About 75 people and a crowd of kids and parents near the front where they are giving out the awards. Kids artwork everywhere, i am not finding Livie's art anywhere, not that i even know what I'm looking for. 6:52, they are out of the bathroom and I push to the front of the crowd. I had just heard the guy with the mike ask "Was there anyone else?" Luckily, another boy had stepped forward and the man was asking him questions while kindly critiquing the piece. I positioned myself in the front and Livie began getting just a slight bit antsy, she brushes some woman who is sitting near the floor and I get a slightly dirty look. Lady, if you knew what I'd just been through and you value EXISTENCE...you won't say a WORD. "Okay, is there anyone else?" the emcee calls out. We step forward and I give them her name and the school name and they pull it up on the screen. "Oh yes, I remember this one,it's the stained glass-type piece..." I blurr a little after this, I remember answering a question and tell the MC after the description that she is non-verbal and 6 and autistic.

We were the last one presented, we MADE IT! I asked them if there was a certificate or something. "You should have gotten one through the school. You can buy a copy for 40$. But this one probably won't translate as well onto the reproduction." After all this, you're damned RIGHT I'm buying a copy!

The theme of the exhibit was "A view from my window" or something like that The idea was to show something that was important to you. Some showed culture, some holiday scenes, family. Livie's art was called "Koosh Ball" and was a stained glass-looking 3-D piece with colored paper inside the 'window'. Now that we 'saw' it on the screen during the presentation, we knew what to look for. We scoured through the dozens of paintings until finally we found it next to the 'title' of the exhibit.

As we stood there admiring it, I got a tap on my shoulder. it was a person from the group who had sponsored our school, VSAarts. They said it really looked best with back lighting, when the light would shine through the colors. It really WAS a beautiful and impressive piece. I was really touched with VSAarts work with the disabled, and proud of my daughter, and I think it showed, because it reflected in their eyes. I thanked them profusely and Me, Livie, Aly and Jason wandered around the show, admiring the other work and hanging out to decompress and eat some of the spread that was left. At 7:25 we left 5 minutes before the exhibit closed for the night. A little over 1/2 hour spent, but we got a month's worth of joy out of the experience. We packed back into the car and drove back to the highway and hit the rest stop on 95 to get some dinner. We had a great time eating MickeyD's and goofing on their play area (or lack thereof). Back on 95 and Aly had fun taking pictures of everyone. The Cross Bronx backed up again near the bridge. We finally got home again just before 10 PM.

the final tally:
Total hours on the road: 5 hours 15 minutes
Total time at the exhibit: 32 minutes
Total dollars spent: 28 dollars, including ice cream, chachkies from the rest stop in CT and the 2 dollars from the pizza place which Aly kept.
Total Joy: Priceless

(glad I finally got that one out)

At Least Once a Year...

2009-05-25T19:19:00.005-04:00

It should be 364 days a year, then we should try take one day a year to try and forget; as it stands, we spend today trying to remember them. Never forget their sacrifice...

_____________________

Not to diminish from those who have given the ultimate sacrifice, but I'm sure they would not mind if I tagged on to this post some information for their brothers and sisters and their families from Wrightslaw about issues that face military families with special needs children. God Bless those families out there, if I can help any one of them with this info, I can put in my 2 cents towards the billions of emotional dollars we owe you as well:

http://www.wrightslaw.com/nltr/09/nl.0525.htm

Playing House Again...

2009-04-18T19:59:00.003-04:00

Yup, we're home all weekend, playing 'House'. Unfortunately, it does not involve any kind of standard domestic bliss. This House is the doctordrama on seemingly on every cable channel on the planet. It's one of those shows that is probably playing somewhere in the world 24/7/365. If you don't know the premise, Dr. Gregory House is a diagnostician par excelance with an attitude that makes Don Rickels look like Richard Simmons. He spends his hour on the tube with his fellow doctors sifting through the various possibilities that could be making his patience bleed through their ears, making them see visions of Abe Lincoln, or whatever the bizzarro symptom of the illness of the week is.

Back to the past, Friday we took the day off to give the kids a well deserved fun day out. We had planned on the Bronx Zoo, and the world class effort it would take to get all seven of us out before 9 to beat the rush to get the best parking. But as with seemingly every other best laid plans, Livie woke up at 3 and didn't go down until 5, leaving me a little too tired to motivate the other half to get up, who was up until 2 getting stuff ready for the voyage. This is fairly normal for Livie, but this time when she was up, she seemed more agitated than normal; she was upset and crying at points rather than just awake and playing.

We wound up going to the lesser zoo in Staten Island on Friday, 2 hours less travel time total and no guilt missing any animals; we covered the place from stem to stern in a little over 3 hours. But all were satisfied with the place and we'll probably go back again when in a pinch for something to do. But Livie wasn't exactly herself again; not that we were overly concerned, she just wasn't eating like normal and she was just a little too compliant. The kids were all pretty great aside from a terrifying 5 minutes when Grace wandered away in an exhibit under the radar. 75 new gray hairs, 336 days off our lives, but all's well that ends found.

We made a proclamation to the kids after we got home that we would try and get to the New York Aquarium on Saturday; again, get out early and beat the crowds. We realized we were thwarted earlier in the night at least. Linda, the night owl tells me she was up around 11:30; me the early-to-bedder realized we were in trouble around 12:15 when I heard that blood curdling scream of Livie in discomfort. I held out in bed until 12:45 and finally came out; realizing that in Linda's shoes, I'd be looking to the bullpen for the relief pitcher by now. She had given up on comforting Livie by now; there was nothing that was consoling her at this point. She had been given the 'standard' sleep potion an hour ago (chamomile, Valerian root and her prescription Clonidine), but there was no signs of sleep coming; something was definitely bothering her.

I decided to go in and try and calm her down and evaluate the patient. I had woken up from a pretty deep sleep, mind you, so my diagnostic skill weren't exactly at their sharpest. But like any other parent in the middle of the night has learned, you have to take the emergencies when where and how they come, and night is the triage that you really have to get right. Here we go: Patient: 6 year old female, non verbal autistic. Since patient cannot convey what hurts, we need to diagnose from behaviors. Behaviors: uncontrolled screaming, kicking, holding hands on her ears, no desire for food or drink; general agitation toward anything and everything. Much as I'd like to claim to be House himself, I'm more like one of his flunkies; my focus was on the ear holding, I was looking at the strong possibility that she had an ear infection. House, I mean Linda, had another diagnosis: constipation. She had all the symptoms on her side: she noted that the last time the patient had a BM was Wednesday night, and it was strange. She also had not been eating as well as normal the previous night and Friday.

I was still hedging, I had not seen her pull up her legs or react favorably to a belly rub, so I still had ears as an equal possibility. So now, just like in the show, we have to weigh treatments. We gave Motrin; that was pretty much a no branier. Linda also talked me into Miralax; a prescription stool softener that would surely help start the battle against impacted stools if that were the case. She rationalized that this would be the steps that the doctor would take if we took her on Saturday and she could not see any outward symptoms of constipation. It would blow and chance of going to the aquarium, but that was pretty much shot anyway. So we began treatment and waited it out. Linda laid with her and Liv fell asleep moaning at around 2; I made like House and kicked off early.

I got the early shift; 7am Grace walked out of our room and I followed, only to find Livie already out on the couch. She was very lethargic but no fever. Usually, with an ear infection the fever would eventually show up, my hypothesis was rapidly fading. She still didn't want to eat; now she was even hesitant to drink. By noon, she hit another crying jag and Linda House was pushing for more drastic measures: three words...e-ni-ma. As long as I was the holder and not the kicker trying to get it between the uprights, I was okay with this. Because this is network TV, I'll cut out the graphics and just say, after 15 minutes, the kick was good and our child seemed much much happier. The 'kicker' was that she was actually hungry for dinner tonight and there has not had any outbursts since.

We are now doing all our Sunday jobs today, in an attempt to get the aquarium tomorrow; our three kids were troopers today missing out on a simply gorgeous day for our little medical crisis. I hope that we finally both get a full night's sleep tonight and we can be energized to hang out withe the fishes tomorrow. Another happy ending brought on by good diagnostics.

Post Mortem

2009-04-03T19:10:00.005-04:00

I have to finish up the deer story, because I had so much fun with it this week. First and foremost, my yard is now doeless, Jane was taken away on Thursday afternoon. The cost was less than the 300 dollars originally quoted. But when I got home Thursday night, my mom-in-law confronted me saying "I would have done it for 50! I could have made a couple of bucks..." The ditch digging careers were short-lived for me and Dillan; no way I was spending a rare weekend off in hard labor; besides, the rains in our area have once again turned our backyard into Lake Monmouth. I would have had to weigh her down with boulders to get her to the bottom.

My best moment, however, was April 1 at work. My whole area was well versed in the now legendary ex-deer and my predicament. Late in the afternoon, I called home and got no answer, so I held on the the receiver and decided to have some fun.

"Hey hon, did the guy come yet to pick up the deer? What do you mean your mom went back there? No, no no your kidding me? With a KNIFE? Wait, wait when did the cops get there...and she was bloody? OK, OK, OK calm down! I'm sure the neighbor across the street can watch the kids while you go down to the station. I know I know, but Aly can watch the girls. OK, you want me to come home? What's that? APRIL FOOL?"

Suddenly, the office broke out in quiet snickers, as they had heard the whole story. I retorted and held up the receiver and said "The jokes on YOU all, there's no one on the line!" I had been looking all day to get them and I finally did!

My performance was nominated, and I'm sure it will win, the Robert Newhart Academy of Telephone One-sided Conversations Award... affectionately know as the 'Phoney'. I am out a tidy sum getting rid of that animal, but I sure did have some fun with it!

Autism Awareness Day

2009-04-02T17:25:00.006-04:00

I feel remiss of late because I have not been heavily focused on the area of talking on the internet and fighting for rights and legislation and general visibility for those on the spectrum and those who care for them. Today, of course, is Autism Awareness Day and I think many families on the spectrum are in the same spot that we are in: we have far to much to do to spread awareness. I did wear one of my Autism Awareness golf shirts to work today; I still got berated for being late for a meeting because I choose to help my wife get my two autistic girls on the bus in the morning. There are far too many people out there who have that 'pick yourself up by your bootstraps' attitude and refuse to believe that THEIR priorities are THE priorities and that accommodations are for the weak. I however, have grown to a new understanding and have new definitions for the words 'accomodation' and 'weak'.

I've had a very weird and tough week and much of what I have had to deal with has had nothing to do with autism; but I find that, in many cases, it indirectly does. Late because of the extra accommodations my daughters need to make sure they get on the bus; I'm tired because Livie got up in the middle of the night (it's been much better of late, but still); my wife's still ferrying the girls to after school therapies. We always have that specter of whether we are doing too much, not enough and what is best for each girl.

I guess that is what I'd like everyone to be aware of: that it is still a daily struggle. But then again, after 4 years on this road I have grown so much in my capacity to appreciate the small things in life. My love for my girls and pride for what they have, can and will accomplish knows no bounds. My pride and love for everyone in our family and how they have grown to meet this challenge as well, astounds.

I just hope that every family dealing with autism can grow in their capacities the way ours has over these past 4 years. Yes we do need 'accomodations'; but we are far from weak. God bless us all and those looking from the outside into the spectrum, keep us in your thoughts today, this month and throughout the year...

Oh Deer

2009-03-30T21:30:00.002-04:00

Sometimes I feel like my life is just some ongoing black comedy. Or maybe it's just that I'm always trying to find humor in everything and some stuff just happens to fall into the macabre, morbid or taboo. In any event, let me get into this by first forwarning those of you with weak constitutions or with a special feelings in your heart for all those fuzzy creatures on the planet to please drop off at this point.

This morning I woke up and looked out my back window, as usual, and saw something rather unusual. What's that in the back part of the yard? No, it can't be...yup...a dead deer of all things. My kids were in the yard last evening, so this doe must have died last night, probably from a car strike. Now my area is not exactly Deer Central like some of my relatives where the deer hang around in herds on their properties, smoke cigarettes and talk trash at the passing cars. I have one set of 8 deer that I see once a year maybe; a mom with a decided limp and her 7 daughters (now probably 2 years old). To show my only hint of decency and sympathy, I hope this deer was one of the 'babies' and not the mom.

Very quickly, the full implications of having a carcass in my backyard became apparent. I made a quick call to my local police station and confirmed that I was responsible for the body: in my yard, my problem. If it were in the road...different story.
"Well can we just drag it out to the curb?" Linda suggested
"Oh yea, and we'll just say it was struck and killed on the cul-de-sac." I said...I'm not draggin' and I'm not lyin'
"Let's drag it over into the neighbor's yard!" Linda snickered. Tempting...but no.
"I'll just call someone to take it away" I said, "What's it gonna cost? 50, 75 bucks [pun intended]?"
Linda, in a rare display of quick wit said "Just as long as we do SOMETHING with Jane Doe".

My mother in law however, was more hard nosed about the situation. "WHAT?!? The town won't take it away?" I said "We'll just call someone, they'll take it away for 50 dollars." She seemed shocked at the price "50 DOLLARS! I don't want to pay $50 to get rid of it!" DAYMN, I thought she thought the price was low. "We can just get rid of it ourselves." she continued, "Cut it up, bag it, you have a chainsaw, don't you? Heck, they do it on SVU all the time. I mean, this is just like being a butcher. We'll just cut it up and get rid of it!"

Luckily, it was time for me to go to work, so I didn't have any more time to discuss. On the long drive, I had thought about what the 'manly men' in my family would do. My dad or my brother-in-law would just have gutted it, hung it up, then taken it to their butcher friend and gotten 20 pounds of meat out of it. But, like, I don't have a sharp knife and let's just say that bambi-burgers wouldn't go over well in my house (let's just call them bambergers for all those and let the pun go completely overboard). The other alternative, my M-I-L in the backyard with chainsaw and a hockey mask, wasn't sitting well either.

I called my wife at lunchtime and found that the situation was getting a little more critical. My wife and my mom-in-law had to take Jason for a scheduled doctor's visit, and they had agreed NOT to talk about it. My MIL had commented to Linda "Don't worry, don't ask me about it, I'll take care of everything." Oh, shit. I have to act quickly. I checked the internet for 'animal removal' and after a somewhat over-detailed website, I called seemingly the only person in the area who does this kind of thing for a quote. "For a deer, I'd have to get the owner to call you back to get you an exact figure, it's not stuck in a fence or something?" she said. After I made one of those droll looks at the camera I said "No, it's in an open space in the backyard, it could be picked up and taken away rather easily." "Well," she continued, "it depends, but the price would be around 350-500 dollars." "Okaaay, thanks, I'll call you back."

Now I'm thinking about being out there with my MIL, with the hacksaw and a white butcher's coat. I'm NOT paying $500 to remove an animal who happened to die in my backyard. Okay, time to weigh the options:

Mom's legs-sticking-out-of-the-garbage-can idea...I just can't do it and I can't have her do it either.

Drag it out to the road behind my house and run like hell at midnight: not pleasant but a viable option at this point.

Last, dig a big hole in the backyard with lime and be done with it: Lotta work but it seems to be the only honest and cheap (and less than morbid) alternative.

So I get home tonight, eat some dinner, get into my sweats and announce the digging will commence in 5 minutes. Of course the older three are all gung ho to get out there. Of course Jason, has to go out the front door and announce to the entire neighborhood (there were 8 pre-teen boys in the cul-de-sac at the time), in his best impression of Vern from Stand By Me said "Hey guys, wanna go see a dead body?" (BTW, did you know that Vern kid was Jerry O'Connell?). It took 10 minutes before the gawking stopped and we could get down to work.

Night falling, only one shovel and one pitchfork (SNAP) there goes the pitchfork. We got about one foot down and called it a night. Me huffing and puffing; Dillan barely breaking a sweat; Jason providing color commentary; Alyson banned 15 minute before that over fighting over the shovel. Just the kind of thing I look forward to when I come home after a long day at work.

Hopefully, this will be the end of the story. We'll spend the next two or three (or four or five) nights getting 3 or 4 feet down and be done with it. I'm not really laughing as much as I was this morning, but dark comedy is supposed to make you think as much as laugh...

Sometimes, Just Take it at Face Value

2009-03-25T22:58:00.004-04:00

I freely admit I'm a cynic. I will look for the 'angle' as to why someone might be doing something that, on the surface, might seem altruistic. So when Gracie had a note in her backpack saying that she was the 'most improved student' and that if we brought her to a specific Lakewood Blue Claws game she would receive an award on the field before the game, my cynicalarm went off. Then, when Livie came home with the same note, I got in trouble with the whole household because of my smirk and attitude about these 'awards'. No way, EVERY kid must have gotten one of these notes, this is a sales gimmick for the team to drum up sales.

I made Linda write notes to their teachers to ask them if this was true. Turns out, they ARE both the most improved students in their respective classes. Gracie's behavior has improved markedly over the past few months and Livie's signing and receptive language has exploded over the same time period. So I happily eat my own words. Yea Yea...there are only 6 kids in each of their classes and yea, the Blue Claws are going to sell 5 tickets to the rest of us. But i can't wait to be out on the field with the two of them while the echo of the announcer mispronouncing my last name reverberates through the stadium. I guess they won't let me take the mic and say that I am truly the 'luckiest man on the face of the earth' to have two girls who are doing so well.

New Therapist (subtitle: The Big Box)

2009-03-03T13:30:00.001-05:00

We finally received our mattress for Grace last week, and I found enough time this weekend to set up the girls' room the way we'd like it (reintroducing Grace to sleeping in her own room comes later). Not enough time to pack away the toddler bed and the crib mattress, however. We were also left with a huge, go cart sized box in our living room, the bane of parents' lives because these boxes tend to have 9 of them. This one has been no exception. It was a cat rest, a roller coaster car, and a race car briefly, until Aly realized the amount of effort it would take to push it down the hall with Grace inside. She spent 1/2 hour prepping it with duct tape and it spent 2 minutes in actual operation.

I'll not get into the details of the battle for this box, suffice it to say that both Jason and Aly had vied for the cardboard... Jason had lost. When Aly had given up on the race car project and was about to begin the dismantling, when I intervened and passed the prize back over to Jason. Jason took off with it and began creating something called a Pat Pat Rocket. Gracie had just received this thing related to the Disney show Little Einsteins, so I am new to this whole rocket business. But here's Jason jumping in, getting Grace involved with the designs on the inside.

Linda told me Jason has been doing wonderfully with Grace, interacting and getting her involved with imaginary play. From the play category, Jason's pretty much the polar opposite of a 'concrete thinker', preferring to make up things as he goes along, mixing up medias of TV shows, Legos, video games and anything else that gets lodged in his head. He's has a very warped imagination (he's my son after all)! All that imagination pours out and is a perfect foil for Gracie's scripting and repetitive language. They spent hours in the spaceship, pressing the imaginary buttons and going on imaginary 'missions' that Gracie is following along with and enjoying. The ship is still residing in the middle of our living room, although I am not so averse to it's existence...at least for now.

So, we can add Therapist to Jason's long list of potential career paths: Screenwriter, actor, writer, dad and anything else that requires an overactive imagination. Thanks, Jay

Sleep Deprivation in 3D

2009-02-24T15:00:00.001-05:00

Once again, I am back on my 'sleepbox', ranting about that little thing that most take for granted and that many of us caregivers to those on the spectrum long to achieve...that 8 or 7, heck sometimes 6 hours is a blessing. Three words: Sleep Is Essential. It's even more important than all those other life sustaining activities. Lack of exercise kills you slowly; a bad diet is going to cause long term issues. OK, maybe if you stopped drinking, you'd die faster, but sleep is critical for for for, what's that word again...oh yea, THINKING. We tag teamed Livie this weekend, we alternated the early shift (4:30-7:45) then when Grace got up, the other would sleep. Fine and dandy if you don't need to get anything done. Monday morning came off without a hitch, she got up at a reasonable time. This morning though, I'm up with the fisherman at 4:15. No tears, no screaming...just a little girl looking to get up before the sun did.

The most frustrating part of all this is that we have not found a reason why. Go back to the days when your child was an infant. Imagine that feeling when your baby is getting up at night, and you're not sure what's wrong. Diaper's dry, no fever, not hungry, maybe teeth. maybe something's brewing. Sometimes it's just that they get in the 'groove' of getting up in the middle of the night. But in our case it's now different. First, this 'baby' is 6 years old and capable of great feats of destruction; she doesn't just sit in a crib and rattle the bars. Next, the baby will eventually grow out of this, there is a finite timeline of 2 years old three tops. Yea, you get a thirsty or scared child in you bed once a month, maybe once a week, but we run into spurts of 3 and 4 and 5,6 days in a row. Last, we worry that there is indeed something going on physically with her that we are missing. She has a notorious high pain tolerance; we've missed abscesses, double ear infections, you name it. So, it all adds up: Fear, frustration, forced insomnia = fried brains.

Then you have the feline Grace, who has taken up permanent residence in our bed. We're waiting on a mattress so that we will revamp their room. We'll have our revenge at that point. One of US will wind up taking residence in HER bed with her until we can get her acclimated to sleeping alone again. Yea yea, in the meantime, we're breaking the cardinal rule: make them sleep in their own bed. But they will bounce off each other if they are in the same room. One will wake the other, and all four of us would get no sleep. Linda and I are honestly getting used to having a foot in our face, or having her trying to literally push us to a corner of the bed so she can stretch vertically on the bed.

So midnight madness, make that, pre-dawn derange-ness still reigns supreme in the house. I'll start feeling the longer day around 5pm, and I'll have another cup of coffee and shake it off. I just hope this isn't the start of a major waking-streak. If so, I may wind up making even less sense than I usually do; I may even need to borrow some of Salvador Dali's face props from the painting above!

DIFFERENT WEEKEND

2009-02-23T12:45:00.003-05:00

We had a little break from the norm. I had a little time this weekend away from the standard therapies in Lon Gilsland and found myself in the afternoon, afforded with some time. Time that I could just flippantly decide what to do. Not that there wasn't 1001 things I could and should be doing, but this was a day that I could do something frivolous for a change. First, I decided to take Livie out, because she had not had a weekend off either. Then, I thought, Gracie could also use getting out of the house. But, I freely admit my limitations and I would not attempt an excursion out with the two of them alone. I decided to bring Alyson along to be a second set of hands. Then Jason decided that he wanted to be included (much to the protestations of Aly). Finally, just before leaving, Dillan decided to join us.

OK, all five was not what I had signed up for, but that's the five cards I had drawn. We headed out for parts known on Route 36, a little known place called the Twin Lights of Navesink, the historic lighthouse overlooking Sandy Hook. Aly was looking for someplace indoors (translation: a mall or some place with games and rides), I was looking for a controllable place where all would be sufficiently awestruck to not run away or fight. The lighthouse fit the bill, although, I'm not sure Linda was happy about us climbing the stairs into the tower. We did a 'club sandwich' of sorts on the stairs with the girls; the two boys going first, Gracie next, Aly behind her, then Liv, then I followed up the rear to catch any falling debris. As expected, Grace shot up the spiral staircase rivaling the boys with her speed; Livie was tentative but consistent going up. The view was spectacular, but with my combination of acrophobia and kids-sqeezing-through-the-bars-or-jumping-down-the-stairs-Ofobia, I could not relax.

We did the obligatory 5 minutes at the top, then the real fear began; getting back down. The last set of stairs up to the top are very narrow, not much wider than say a good sized ladder for getting out of a pool. Again, of course, Gracie AKA SuperGracie had no fear nor trepidation going down; all she needed was three children to buttress her in case her head got ahead of her legs. Livie, is another story. As I went down the stairs backwards first and helped her down, I was reminded of the old joke about why Ginger Rogers was a better dancer than Fred Astaire: answer, she did all his moves backwards and in high heels. I didn't count the stairs, was it 60? 80? 1869 (# of Empire state Building steps)? It just seemed like it. I had Gracie's coat in the hand I was guiding Livie with and I was waiting for her to trip over it. I also had three kids saying "Where's dad and Livie?" No pressure.

We got out with no scrapes or screams (save Gracies expected protestations when we were leaving). We could not find our standard camera but we did have Aly's low budget camera, so we may have some record of the fact that I DID fly solo with all five kids not only to the lighthouse, but also a walk on the beach afterwards. There were only some minor skirmishes, half of which were due to my nervousness, so the gang was good to me...and to each other. Linda, although I didn't ask her, probably was unnerved by the eerie silence in the house...

The Price of the Stim

2009-02-09T22:15:00.000-05:00

BA- Before Autism if you would have asked me the meanings and concepts behind dozens of phrases, I would have not had a clue. Among them was the idea of stimming. I guess it's not such a foreign idea to many of us on the NT side. The idea that you need to repeat things and do things to calm yourself down, to 'center' yourself, it's not such an alien idea. From spinning something mindlessly on your finger, to needing a cup of coffee and 1/2 hour in front of a TV to wind up or down, it's a pretty universal idea across the entire realm of human existence. Even the ideas of destructive stims: addictions; bad behaviors; I guess you could liken many of the world’s ‘vices’ to a negative ‘stim’.

Which brings me to my girls. Gracie’s stim behaviors I can almost relate as an OCD-type of behavior. Wanting certain thing certain ways; repeating sections of videos over and over and then echoing them back nearly as much. Nothing kills conversation more than hearing a 4 year old giving you the Baby Einstein sales schpiel from the end of the tape with all the same words and inflections. The only time her stims become truly negative is when they need to be repeated to the exclusion of all else and tantrums ensue if they are not ‘honored’. In short, Grace’s ‘stims’, if you can call them that, are not normally negatively impacting her or our life.

Livie, on the other hand, has a number of stims that can easily get out of hand and prove to be harmful to person and/or property. Let’s start with the oral fixations. We have really battled, over the past 4 years, over what’s going into her mouth and trying to find non-dangerous (read non-toxic; non disgusting; hopefully non offensive) alternatives to her chewing ‘stims’. We’ve had wipes replaced by gum; toys replaced by chewie tubes; socks replaced by…by…what was it, wipes? Anyway, the oral need to chew and grind always seems to wane and wax; lately we’ve been in full blown, chew everything in sight, mode. We need to get her back on some minerals we’ve been lacking lately and we think pica has begun to rear its ugly head, even with Gracie.

Now finally we get to the reason for this post, Livie’s all time favorite stim: kicking. This one goes back all the way to the beginning of her regression, pre 2 year old, when she first started kicking in front of the television. We thought it was neat, because when she first started this stim (before we know what a stim was), she would get excited at the start of a Dora tape and lay on the ground and kick her heals to the beat of the song. We laughed for a few weeks until it also was being done in anticipation of, to request additional viewings and eventually as just a need in general.

This kicking stim has gradually morphed into an all purpose communication tool, relaxation technique, sensory seeker, attention seeker and even sometimes, affection seeker. Having Livie come sit next to you and stick her feet in your face is indeed an honor, as you are privileged enough that she sees foot that you massage hers! If she is not liking your position or her lack of being the center of attention, she will give a bang on hopefully an inanimate object. On occasion, a living breathing being will be the object to kick. Most often she is very precise with her blows and they will be as a touch on the shoulder. I look at her feet almost like another set of arms and hands as they are quite exacting and almost gentle (it’s like the trunk of an elephant if you can grasp that concept). Nevertheless, we have had some scary kick moments with both human and feline when Livie becomes less than focused on what her feet are doing.

Ah, yes, feet not in control. Let’s see what Livie has done over the last 2 years or so. She has taken out all three doors on our entertainment center. She has rendered the remote on our living room TV unusable (she must have hit the infrared receiver on the TV itself. She has taken the sliding doors of her bedroom closet off their hinges and exposed the nails on the plasterboard walls next to her bed. She has destroyed the blinds in her room. And last but not least, the pièce de résistance, last week she put a hole in the wall of our bedroom. Linda had only clocked her in the room a couple of minutes; she had pounded on that wall for hours over the past two years. She must have hit it just right.

Like it or not, we have now labeled the kicking stim public enemy #1. It's not that we are stopping it at all costs; we just have stopped 'ignoring' it. She can't go back to our room until we can figure out how to repair the damage. Re-wallpapering our bedroom was not on the agenda.

Flu Season

2009-02-02T20:00:00.001-05:00

OK, I may not be very coherent today, because I am part of the 37.5% of the household stricken with the flu. It's been a fairly weird couple of weeks. Two or three weeks ago, we started with a cold in the house. I think I've mentioned before that the CDC uses our household fro advanced early warning and tracking of various minor epidemics. The boys were both down for a day or two, then Gracie was down (I think Livie was in there too intermingled, but I'd have to pull a FOIA to be sure). But last week, the big F.L.U. hit. We thought Aly had been a straggler with the previous cold, but when she didn't get back up properly on Thursday, and Liv began showing signs of the same lethargy on Friday, we knew we had a communicable disease in our midst. Not nearly as bad as the pandemic of '07 mind you, but still chock full of coughs and miserable children.

Lin and I kinda took it as a blessing in disguise. We cancelled Livie's weekend therapies and set out to clean house. We rarely get the chance to tag team the house on a weekend anymore and we relished the chance to do some hardcore cleaning. We got through our bedroom on Saturday; I packed up all my CD's and by Saturday night, I was whipped. But it turned into something more by the time I went to bed. By Sunday, I was in no position to clean (horizontal) and Linda was in no mood (sleep deprived due to a late night with Livie) to make any attempts either.

So, I got a sick day Monday, and I am anticipating (like waiting for black hooded man with the sickle) for Linda to come down with it and split the household down the middle and send the house into panicked survival mode. If there's one thing worse than a house full of sick kids, it's a house full of healthy kids and sick adults!

We had the two girls to the doctor today and she has seen this one and it's the 7 day variety. She knows first hand because her flu vaccinated household has been through it. Aly's got a pass from school until Wednesday. We hope the other three kids might have had a white blood cell boost with the previous cold. As for me, I don't think I have the stamina to be here all week; I need to go to WORK and get some rest!

Snow Daze

2009-01-28T20:00:00.000-05:00

We all got stranded at home today, due to a snowstorm hitting NJ. It was not really that bad, but these 'amateurs' in Monmouth closed all the schools. Remember, we came from Sussex County NJ, where they judged closing schools based on number of feet of snow. Under 1 foot: delayed opening; over 1 foot: they'd delay the opening and see how the roads were to see if they'd close them!

I don't know about where you were brought up, but for Linda and I, we had a completely different experience with the 'administration' of snow days compared to the present. Way back in the 20th Century (he said in his shaky old man voice), when we were kids, they'd blow the sirens in the town at a certain time; if you heard the sirens, no school. In my hometown, we had a 'whistle' about two blocks from our house (to get a smile out of my sibs, it wasn't really a whistle, it was more a BAAAAAP), and you were not going to miss that sound. But even if you did, you could listen to the radio for hours to hear YOUR school called out, or you could dial and redial the school number until you got through to hear "School is closed" o the answering machine.

Now flash forward to the MODERN WORLD. A MODERN WORLD of automated phone dialing and messages. Let's call EVERY parent out there and inform them first hand. While that's great for John and Jane Q Public with John Jr in middle school, it's a decidedly different experience for us multi-handicapped (translate: children) families. Top that off with the fact that we're in 4 different schools with the 5 kids, and our house sounds like a radio call in show in the early morning on snow days.

First call comes in at 5:11, it's the 'main mom' from Livie's class, starting the phone chain to call the other parents on the list. 5:14- the first of the automated school calls comes in. While Linda is looking for the list, the second auto-call comes in at 5:16. She begins getting the task of calling the other parents, the fourth call comes in at 5:21 "Yea, I know, can you take me off your list, I'm a dialmom too" Grace's class chain mom-o-mater is informed by Lin. Then the comedy starts. Auto-call #1 from Jason's school fails to make a full connection at 5:25. Aly's auto-school call comes in at 5:27; then a second call from the misfiring automaton at 5:28. Then the final Jason call gets through at 5:31 with full message regalia.

8 inbound calls and 6 outbound calls later, do you THINK we know that schools closed? Thank the MODERN WORLD and it's technology, everyone in the house is awake and informed...

Liv's Mainstream Issues

2009-01-27T18:30:00.000-05:00

Livie's had some issues over the past few weeks, and we finally have gotten to the root cause, so to speak. Last Monday, the Speech Therapist said she noticed her one tooth on the top left was not doing good. Linda had somewhat written off the comment as just her noticing Liv's 'shadow' on that one tooth, an old 'war wound' from her days when reflux ravaged her enamel and caused several cavities. But Linda looked on Wednesday and saw what the therapist was talking about: a bubble above the tooth. She immediately called Liv's dentist and got an appointment and a prescription for antibiotics. The first liquid prescription made caster oil taste like Coca-cola, Livie absolutely refused it, which is unusual for her, she normally will tolerate almost anything we give her, so we knew it was bad even before we tasted it. Linda, had the prescription redone for a chewable, much better results and we held the infection at bay until today's Tuesday appointment.

The verdict came in from the dentist...abscess, the baby molar would have to come out. She had a choice of having Liv go under general anesthesia or just do it today in the office with Novocaine. I am proud to say, for both my girls, Linda decided to go without the general (both for her and Livie!) and do it today; Livie bore the brunt of the procedure with incredible resilience. She went through the Novocaine with nary a flinch, and really only got really upset when the crack sound of the tooth coming out was heard (yea...I flinched and cringed too when Linda described it that way...thought I'd share the feeling).

So that was the 'emergency' procedure, but we also had Livie's bi-annual visit to the developmental pediatrician yesterday. Let's start this monologue by saying that, as with most everything we hear from mainstream doctors related to autism, I do not hold this doctor's opinions about autism and what to do in such high regard. Don't get me wrong, for many many people dealing with autism, especially those new to the diagnosis, a dev-ped is the perfect place to be to get your bearings and even to get guidance if you are not, shall we say, up on what to do and how to do it with regards to autism. For people like us, however, dev-peds are a necessary evil...like lawyers. You need them as gatekeepers and figureheads to sign the generic papers stating that this therapy is needed or a 'real doctor' to say Livie is indeed on the spectrum.

Linda had called me at work yesterday, nearly in tears, about what this doctor had said in the appointment. Some things, we agreed with. Livie has indeed gained a lot of weight over the past 6 months. But it was her reasoning an logic around why she gained and how we should deal with it. "You know, these reward based therapies will often cause them to gain weight." 'Scuse me? OUR schools 'rewards', will normally consist of praise; if food, it's 1/4 of a GF/CF M&M. The real problem is at home and that we love to feed her and that frequently, her mandings center around food. "Well, if she asks for more food, just say no...you've had enough". OOOkkkayy, she's communicating, she's asking for more, your solution is to shut off rewarding the communication with not even a grape? We'll figure out the diet thing on our own, lady...oh sorry, Dr. lady.

Next comes the grilling on our latest venture regarding the trans-Cranial Direct Current Stimulation in conjunction with language therapy. "You're going to Long Island twice a week? I haven't heard about this, I don't know about it's efficacy. What is this doing to your other kids, you guys being away?" OOOO, hitting below the belt, talking about being away from the other kids. It's a decent point, but this is only a one year stint and we will eventually work this into a once a weekend thing and incorporate the other session into her 'normal' therapy schedule.

Then she gets into whether or not it was time for a change to a new speech therapist. Now I'm getting her agenda; she does not like the idea of trying to get Livie to speak. She also is not happy with our current school. But Livie had already shut her up with using 3 independent signs during the visit for things not in view (this courtesy of her current teacher's ideas on signing). Nevertheless, she namedrops two other programs in the area which are good, but we had written off already as not great due to their rigidity using discreet trial ABA or not conducive to Livie's needs.

Then, she get on Livie's attention span. She would not 'play' with the Doc's toys that she had provided and was beginning to annoy the doc by putting them in her mouth instead. Linda says "She does not play appropriately with toys, she never has". DUH! Check the DSMIV, doc-tor... it's, like, one of the potential CRITEREA for autism! Then she comments "Well, for the attention, I would have prescribed Risperdal, but with one of the side effects being weigh gain, I'd have to say no!" NOW WAITAMINUTE....RISPERDAL? Hey Doc? Did you actually READ what the uses for Risperdal regarding autism ARE? Or do you just play word association and are programmed to "think autism, think Risperdal"? I know there are very good uses for Risperdal when it comes to controlling an out-of-control situation, but attention span AIN'T one of them:

RISPERDAL is approved for the treatment of irritability associated with autistic disorder in children and adolescents (ages 5-16 years), including symptoms of aggression, self-injury, tantrums, and quickly changing moods. It is the first and only prescription medication approved by the FDA for this purpose.

Linda and I talked through the points that she made and, as always, we have some work to do. I may sound arrogant, but I get the impression that this dev-ped does not know a whole lot about real-world autism. Oh, she might have a half dozen to dozen autistic children in her practice, but I think that she might be relying a little too much on the standard autism playbook. It saddens me to think that this scene may be played out all across the country, with people who may hold doctors and their degrees on such a high pedestal as to not question whether they REALLY know all there is to know about treatments, therapies and behaviors. It also saddens me to think we will probably stick with her, because as Woody Allen put it in the end of Annie Hall...we need the eggs. I'd prefer to have a dev-ped who would work with us and collaborate (someone well versed in autism would be nice too), but we'll have to settle for one who just lays eggs...

OBAMA

2009-01-20T17:22:00.003-05:00

I couldn't let the inauguration pass without a quick note of thoughts. It's incredible the amount of good spirits that was in the air this morning and this afternoon, it has truly been historic. With all that goes along with him being the first African American president an all that is at stake in the country and indeed the world as far as the economy goes, we are truly at a crossroads.

I think there is a lot of expectation for change in the situations of groups of people in former and current positions of minority. Indeed, the African American community, I feel, has finally reached that 'promised land' where character is and color is not where you are judged. But beyond that obvious observation, I think others in minority positions feel a wind coming on. From a perceptive of being somewhat of a 'minority group' ourselves being in the autism community, I just think there is a level of cautious optimism that SOMETHING new is on the horizon. Whether there is benefit in this new administration or will we get trampled by this 'new government service' mindset, from a logical perspective I can't be sure. There will be an obvious need for belt tightening in Washington and I'm not sure where we will all wind up. But the feeling is that every thing's gonna be alright. If you don't mind the corny analogy, we are at the crossroads and we just took the left!

I had also planned to make an observation, but Barack (uhh sorry THE PRESIDENT) beat me to it in his speech:

This is the meaning of our liberty and our creed - why men and women and children of every race and every faith can join in celebration across this magnificent mall, and why a man whose father less than sixty years ago might not have been served at a local restaurant can now stand before you to take a most sacred oath.

God Bless America, watch over our nation and our President...

Gracie the Cat

2009-01-03T12:30:00.002-05:00

We have been somewhat lax in our disciplinary duties of late with Gracie. When left to her own devices, it seems that her natural state or that mystical animal companion that she turns into is a cat. Although, I'm sure there's a few hyperactive puppies trapped in there too.

Her sleep has been very good lately, the bad news is that we have given up trying to keep her in her bed all night. She will now only fall asleep in our bed and we have to carry her into her own bed. No matter what, by morning she has wandered back in and settled in, most times, without so much as a bounce on the bed or cry for attention. The feline connection here is the way she sleeps. Her favorite position is stretched across both pillows with her head bumping on of ours and the feet causing the other to wonder who's trying to pick our nose and why are their fingers so stubby? The unwritten rule is that if the other finds her hogging the pillow, like so many of the cats we've had, that we would reposition her between us in the traditional position. We don't use the traditional cat remedy to this pillow hogging because Grace doesn't usually land on her feet.

Her other feline attribute is her amazing ability to jump from object to object and object to floor, as well as her climbing ability. Upon witnessing these feats, I swear my mom-in-law is going faint dead, my wife screams bloody murder; I silently calculate the distance and pray she clears it, or that we have given her enough calcium if she doesn't. She frequently will climb up the back of our couch stark naked and stand in front of the picture window facing the cul-de-sac. It's a peep show for the neighbors; oh well, at least the boys across the street will be properly trained in female anatomy when the time comes.
She will climb bookshelves, dressers, entertainment centers and anything else that could have a potential prize at the zenith. She will jump from the couch to the floor; from the BACK of the couch to the floor, from the therapy ball to the couch (thank goodness her claws haven't come in yet) and every deadly combination of the three. The last straw last week is when she climbed her three foot higher dresser, cleared the two foot wide chasm and two foot high bedpost, to land knee/butt first onto her toddler bed. I witnessed the first one mid jump, and made sure that I was sufficiently cross in trying not to get her to do it again. I'm working on Liv in the bathroom and I hear a CRAACK! My fear was that Gracie Knievel did not clear the headboard; and ran into find her saying in some long lost Dora script "Oh no, the bed is broken!". She had clear the headboard but the siderail could not handle the strain. It had cracked at the screws. OK, the revamping of the bedding arrangements were not our emotional, therapeutic or financial agenda for 1Q 2009; so this was not happy happenstance. Not to mention that this bed was a 'loaner' (sorry, guys, I'll give you a call in a couple of days). Gracie's pearl of wisdom came yet again out of the annals of Dora the Explorer, "STICKY TAPE! Stickky Taaaape!" All of you understand that feeling you get when a child applies pre-school logic to what you perceive as seious situations, but before my blood reached 212 degrees Fahrenheit, I noticed that the break was pretty clean and it only affected one screw. Immediately, the male logic took over and wanted to apply the solution to 99% of the household repair projects...DUCT TAPE. But silver on wood would not have looked that attractive, and the solution WAS INDEED the preschool solution: clear, wide, packing STICKY TAPE. I mean, the bed will clearly not handle the stress of most all acrobatic maneuvers now. But at least I think we've bought ourselves a quarter and we'll last until spring.
We have had more focus on Livie, and we've let Gracie's progress slip somewhat. She is very active and dexterous, I hope our more sedentary lifestyle doesn't slow her down, we have her jumping from the pyramid of cheerleaders in the future. But I already have too many cats in this house, I don't need another...

Ending 2008 on a High Note

2008-12-26T22:00:00.001-05:00

Livie has been stealing the spotlight time and time again over the last few weeks. First, it was the, out of the blue lightning bolt of starting to take herself to the bathroom by herself. We weren't prepping her for it, we had been working a schedule and neither was a school. She just made up her mind, got herself into the bathroom and did it; and she has kept on doing it. Maybe learning how to open door a couple of months ago helped with her confidence. I think I mentioned, we still have to worry about her stimming in the bathroom, in the form of flushing things down the toilet and playing in the shower. But from a 'going concern', she's in a steady state.

The other amazing thing with Livie lately is her communication. In September, she started with a new teacher who is big on signing. So she has started a dozen or more new signs. Along with this, her speech, or more correctly her meaningful sounds have increased as well. Her speech therapist would always be able to P,B,M,D,T out of her in a therapy situation, but we would rarely get them out in a natural situation. Over the last few weeks, a new form of potato stick got her talking. French's used to have her favorite, but they have since stopped making them. These new ones, called Lesser Evil Krinkle Sticks have gotten her to use the sound 'Pa' consistently with me to ask for them...God bless junk food (or not so junkie junk food!).

Now to the cherry on all this, we just recently started her with a new language therapy. First session today and Linda received the shock of her year. The group and Linda were pairing with Livie in the first session, which basically means they were doing everything possible to be her best friend. They were playing in the water in a sink and bringing in various toy animals. Linda showed her and said 'snake'; Livie repeated back SSSS. Same thing with a frog...FFFFFF. These sounds are not in her 'prompted' repertoire, so Linda was understandably bowled over. We're not sure if it's our doctor's methodology or if it's the use of transcranial Direct Current Stimulation along with the therapy. It is way too early to tell, but as we move along on this, I'll bring in more detail.

In any event, it definitely gave us a high through about half of the supposed-to-be 90 minute ride back. After we hit a traffic jam in Brooklyn, all the great feeling left us, we threw out the rule book and started giving her juice; 30 minutes into the jam, we could tell her other new found talent was being threatened. She was getting real upset and we knew why, but I was not pulling over in some graffiti strewn section of Brooklyn to find her a toilet. She didn't make it all the way home and we had a major cleanup somewhere in a residential section of Staten Island. I can't fault her, she really tried, but we can't expect her to make it to 2 hours with a full bladder.

We're still on the high, despite the traffic setback. She is a trooper, a super hard worker; everyone who works with her is impressed with her flexibility, her positive attitude and her ability to hold it together. I am so proud of her and I foresee great things for her in 2009...

Mentioning Miscellaneous Minor Miracles

2008-12-21T22:15:00.000-05:00

We've had a mild shift in the direction of the wind of late and I thought that I'd acknowledge it. My realization that something was working in our favor started out this week as everything going apparently wrong. We had some pretty bad weather in NJ on Thursday into Friday and then again Saturday into Sunday. My mother-in-law had gone home early on Thursday night to avoid the mayhem and was planning to come back Sunday morning to take the three older kids to a local presentation of the Nutcracker ballet.

In the meantime, we have been battling for literally years over our on again off again refrigerator, which of late had been off again (to colorize this thing, it should have come in yellow). Long story short they had ordered a part to 'fix' it and the part was no where on the planet and the fridge had developed new symptoms and was just plain not 'fridging' our food. On a tip from a soon to be sainted customer service rep, we got a number to call to request a replacement fridge. Just like that, we are given the green light for a brandy new fridge to replace our 5 year old, been through a move and the wringer falling apart one. The delivery date: Sunday.

Now the two stories collide as we have a 12:30 to 3 delivery time and a 2:00 appointment with Godfather Grosseimeyer and the Rat King. We're tearing apart the kitchen to make way for the new fridge, when we get the call from mom that she's running late. She was supposed to have been taking the kids to the Nutcracker; now I was going to have to step in as the understudy. Off come the sweats, on go the dress casuals, and off we fly, 15 minutes short of arriving at the 2:00 deadline. Fortunately, the Sugar Plum Fairy was dancing 15 minutes late and we arrive at our seats just as the lights go down; we even had a spare minute to allow Aly to hit the restrooms.

Meanwhile, back at the ranch, Linda looks out the window and sees the truck pull up minutes after we leave, still no mom. She turns to see a stark naked Gracie and a bottomless Livie. She scrambles to make them Rated G just as they ring the doorbell. Mom arrives just a minute or two after they do and they can tag team the dynamic duo while the gentlemen install the brand new beauty.

I have to admit, I got the better end of the deal today. I got out of the house, saw a great ballet, had a blast goofing with the kids to and from the show, and did a command performance of the Angry German Kid Drives a Car on the way home. It was amazing to me that not only we got there on time, but we also got along under pressure. Linda had a more stressful time, but when we got home, that fridge was beautifully cooling down in it's new home.

We've had other near great things happen to us in this magical month of December. My brother-in-law, near-fresh out of Columbia nursing, got a job in a hospital near him. We got our first check for a grant to cover off on Livie's OT therapy. Last but certainly not least, Livie, over the past few days has taken to INDEPENDENTLY taking herself into the bathroom and taking care of business. We have stopped her bathroom schedule and are keeping closer eye on her cues. Now if we could only get her to stop playing in the tub and the shower, we'd be in like Flynn.

If I were a God fearin' man, I'd see a buncha miracles that I'd be thanking Him for all the great things He has moved for me. But, they're all not really miracles, we've worked tirelessly at all these things from pushing for the fridge, to the potty to my BIL's incessant search for a job, it's just the season that allows you to appreciate these things when they happen at this time. Although I think, along with a wry sense of humor, God also has an impeccable sense of timing!

I've had this song running through my head as a result of all this good fortune, it's a non-sequitor except for the chorus:

Something Goes Right: Paul Simon

You've got the cool water

When the fever runs high
You've got the look of love
lightin your eyes
And I was in crazy motion
Til you calmed me down
It took a little time
But you calmed me down

CHORUS
When something goes wrong
I'm the first to admit it
I'm the first to admit it
But the last one to know
when something goes right
Well it's likely to lose me
It's apt to confuse me
It's such an unusual sight
I can't get used to something so right
Something so right

They've got a wall in China
It's a thousand miles long
To keep out the foreigners
They made it strong
I've got a wall around me
You can't even see
It took a little time
To get to me

Chorus

Some people never say the words
I love you
It's not their style to be so bold
Some people never say those words
I love you
But like a child they're longing to be told

Chorus

Christmas in Africa

2008-12-20T16:00:00.000-05:00

If you have not heard the 12 Days of Christmas as done by the A Capella choir Straight No Chaser, it kinda dovetails into my wonderful experience on Thursday:

These guys' story and CD are great by the way, but back to the story. The last part of their '12 days' sings of Christmas in Africa, which is just what the girls' school did. Some (probably now hated) person at the school suggested "Hey, why don't we have the kids put on Broadway's The Lion King!" I just can't imagine the coordination with every class in the school with the decorations; the learning of the parts for all the principles in that play; to the costumes (we all had to buy specific color sweatsuits and they did the rest). Logistically, these people could have moved armies in Iraq and had time left over for lunch!

They had two shows because all parents were showing up. We had 'official' playbills upon entering and a hand-made Pride Rock on the stage. When we had all 50 or so kids with their paras on stage, some signing, some singing, one or two crying, a few waving to their parents, all the swinging and stimming and smiling; I understood the beauty of the chaos theory.

There was lots of great singing from the kids; some wonderful miscues (one child insisted "NO LAUGHING, No Clapping, only cheering...HEY, DID YOU HEAR WHAT I SAID?"). My kids were just extras and were paraded out only a few times, but I didn't really care. I was happy for all the kids, upset for a couple who were having difficulty, and proud of those who stood up, spoke and sang and made it a wonderful show. Our principal said at the beginning: "Most schools like ours won't even try to put on shows like this, but we like to see our kids and our parents surprised and proud at what we can accomplish." I don't know about anyone else in that auditorium, but I was proud of the whole lot of them!

What Can Happen While You're in the Bathroom

2008-12-14T00:10:00.001-05:00

We had a long day today. We had a doctor's appointment in Lon Gisland today and we had to leave at 1:15 PM. It seemed like the powers were trying to keep us from going, so much was happening during the hour before we left, I just had to flesh it out.

Of course, all this happened while Linda was 'prepping' to leave (translation: showering and actually putting ON makeup). She goes in at 12:15, My Mother in Law, Aly and I are conversing when Aly's future 'mommy ear' detects a scream from downstairs that is not the 'hey give me that you IDIOT!' scream. 3 seconds later, Dillan is coming upstairs crying, holding his eyes. "I was playing with this rubber thing, stretching it across my feet and it hit MY EYES!" At first, the holiday wanted my to prompt the Christmas Story line 'you'll shoot your eye out', but by his tone and wailing, I could tell this was NOT the time. The rubber portion had shot across his eyes and we were not sure whether his corneas were damaged.

We spent tense minutes as Dillan slowly was able to open his left eye, and then eventually his right eye without too much pain. There were several moments there that my MIL and I exchanged those "warm up the car, we're going to the emergency room" looks, but they did not materialize. I sat on the couch next to him and felt a sharp pain go into the ball of one of my feet. Normally I would have "OUCHED" and suppressed a curse word, but under the circumstances, I though better of it. I lifted my foot and pulled a centimeter long, needle sharp wire from my feet, almost like a push pin thing. Luckily, it hit one of my callouses and it did not cause any major damage; minor bleeding and I got it out.

OK, eyes getting better, metal shards removed from body parts. I go walking in the hallway and Jason says "Gracie says she has to go POOPIE!" Quick Robin! To the BATroom! Grace's been giving me a hard time in the bathroom lately, but this time, she went right away, no poops, but she did pee. Almost the second she's out, Livie's at my hand dragging me down the hall. I figure, she want to know where mommy is, but she stops at the bathroom. This is VERY unusual for her; I take her in and put her on the potty. BAM! Major incident averted. She is hailed as the goddess of the throne that she has just shown me.

1:05...Linda emerges from the bathroom with no idea that the world had turned upside-down, sideways, major feats had been achieved, major potential medical procedures averted. We ran a little late, of course, but we got there on time; we just HAD to get her up to speed on what had happened why she had whiled away her time primping!

Another Writer in the Family

2008-12-08T21:30:00.003-05:00

Well, every time I seem to post about Livie and her accomplishments, Gracie decides she has to get in the game. I caught her in the kitchen copying the words "LOVE SOMEONE WITH AUTISM" off of a magnet on the microwave. Before, I could show what she had done, she had erased the Magnadoodle (fantastic gift for any young kid by the way). She then proceeded to write the bottom word 'AUTISM' again as you see here in the picture. It was ironic, sad and fantastic all in one weird emotion as my wife, mother in law and I exchanged glances.

She then walked into the other room and was quiet for a while, then she asked Linda "Spell daddy". D-A-D-D-Y, then more silence. I walked in, she had gone off to do other things. I said "Who wrote this?" I did not recognize the handwriting as one of the other kids'. "That's got to be Gracie, she just asked me how to spell daddy" Linda said. To translate, L to R/T to B: JAYJAY, DADDY, LIVIE, GRACE, AUTISM

Honestly, her writing does not phase me anymore; she has been writing and spelling out loud for several months now. She will spell out almost everything she sees, and sounds many of the words out. She can spell Mississippi and she only gets a letter or two wrong on antidisestablishmentarianism (just kidding on the second one!). This time was special for us because she had did this all from memory and had written so many things on one board. Like Livies words, I could not pass this up with just a cheer and a clap.

In our world, it's very hard to not be clinical about what our girls do and just enjoy the moment. I just think, if we can only get her behaviors and her socialization better, and work on her scripting and echolalia, she could be AMAZING in kindergarten. No matter what though, she is going to be amazing in school, we just have to fight so that she has the chance to be amazing.

Lighten up...

2008-12-07T23:45:00.001-05:00

I gave in and agreed to setting up outside lights this weekend. We haven't done outside xmas lights since we got here 3 years ago. Now I remember why. Finding them in the attic was one thing, finding the bad bulbs, bad strings, bad polarized plugs that don't play nice with the other strings, all those wonderful things I experienced again, boy did I miss them.

I also brought down Buck and Jane Doe, our 10 year old animatronic lighted dear deer. That is, if you consider a 10 inch movement of the head up and down or side to side to have any similarity to the It's a Small World ride. Problem is that these originally came with eight pieces of metal that allowed you to spike them to the ground. Nooo, they are long gone to that great lost area where the other sock and TV remotes go. So we're left with balancing wire deer on thin legs in 30 mile per hour winds. The other problem was that Buck's front two legs do not light, leading my oldest Aly to comment that he now looks like a kangaroo. Of course that gets my mind racing on how I could write the next Rudolf the Red Nose reindeer song for a Kangaroo (Ken the Kristmas Kangaroo was my fist choice). But alas, those ever-industrious Aussies already appear to have one. I am a sucker for real bad Christmas songs:

Six White Boomers

So six light sets later, with the reds out on one of the chaser sets, half the lights out on two of our 'net' light sets, we're done. 1/2 hour later, we look out to find Jane laying on the ground with her head off her body and the neck still slowly writhing to the animatronic beat. We get fixed and bring Gracie out, the REAL reason we set all this up. She is fascinated with the lights on the house next door and we wanted her to have something to ooo and aahhh over at our house. She ran from house to house babbling with delight, but the chasers sans the red were her favorite. Twinkle Lights, Twinkle Lights! We are finally officially in the Christmas spirit!

Blabbermouth

2008-12-05T17:30:00.000-05:00

I just HAVE to share my Livie's new found voice with everyone. She's been in speech therapy for a couple of years now. They have worked on her oral muscles, motor planning and making sounds. The therapist has always said that she would get the relevant sounds out of her; a K-K for cookie and cup; a P-P for 'up' and quite a few others. But Lin and I were never really privy to her vocalizations; it was probably just situational that she was expected to make sounds in speech, so she did. We would only rarely hear 'pop outs' or relevant speech when she really wasn't thinking about it. We'd get the mama and dada and an occasional coo-key; but it was never consistent.

Yesterday, Linda drags me into the bathroom with her and Liv and tells me that Livie has something to show me. "Go ahead, say it". She come out with, what I can tell, is a very deliberately oral motor planned "UUUU---PPP". Of course the room explodes with our praise and she does it one more time "UUUPP". It was a request to get up from the seat! YESSSSS...

Later that evening, I took her into my bedroom and Aly was sitting working on the computer. "Hi Livie, how ya doing, Aly's in here too". "AAAALLLEE" comes out of her mouth as clear as day. Shock and a congratulatory eruption comes out from us and she says it once again "AAAALEE". We got ourselves a trend here!

Now today, she's leaving speech and waves goodbye and comes out with a "BU-BYYE" at the same time. She was so proud of herself, she jumped up and down with everyone giving her the WO-wo-WO-Wo!

Sorry all you looking for why it happened; no changes in diet, no new protocols, supplements changes in therapies; just good old fashioned hard work from a little girl who is such a trooper working the cognitive, muscular and breathing into vocal replies. Congrats Liv!

Just to cover all her other methods of communication, she really has dropped off using PECS, her teacher at school is into signing and she's picked up on a half dozen new signs. I am even pushing a new sign into the mix: 'gum' . She is TOTALLY into gum and those are the things that will motivate; she will now pinch her cheek several times to request a piece.

No matter what form it is, I can't wait until I can have a two way conversation with her. I know she has so much to tell me and sometimes I can tell that she's frustrated that she can't get it out...but she will...

The Deed is Done...

2008-11-27T23:45:00.001-05:00

Just a quick update on the demise of Space Couch. Death occurred at 6:49 PM on Nov 27, 2008. What was once a 3 piece sectional left the house as a nine piece in sections. We sawed apart the one section; separated the sleeper into three pieces; severed wiring. Both my brother in law and I risked cardiac arrest getting the new couch into the house. Other artifacts of note found in the couch: One nursing breast pad, circa 2005; One crushed Diego plastic figurine (daymn, I should have saved that one!), one Santa hat that had trapped a mouse on a lollipop (no, the mouse was not real); 2 Nuks circa 2006; 4 more spoons; and 2 bags of junk.

Livie now has a corner in which she can get the enclosed space she craves. They are not the 'out of this world' couches with bells and whistles functions we had, but they're a heck of a lot prettier and your butt don't hurt when you sit on 'em! Thanks Mary, thanks Mom n Dad...

Space Couch- 1999-2008

2008-11-23T11:30:00.005-05:00

It arrived in mid 1999, in response to Linda's plea for somewhere comfortable to sleep when the baby arrived. A three piece sectional, dark blue. We christened it "Space Couch", because of all the bells and whistles it came with. You felt like you were in the cockpit of some great spaceship. Dual Recliners, a flip down console with massage, heat and a hookup for a telephone. The other side, a pull out bed and a flip down place for drinks. A Couch Potato's dream for sure. Linda was planning on spending the first few weeks of Jason's life on the couch so she didn't have to get up in the middle of the night with the worry of opening up he C-section.

That was then...one child, one on the way. A few things have happened since then. I can't even remember life back then. One kid...ONE child! What did we DO with all our time? In a 5 year stretch from when we bought that couch, we added four kids. If that didn't change our life radically enough we also added autism to the mix. And the couches have seen it all from the back end.

We weren't thinking durability- four kids later, that is painfully apparent. This was a somewhat decadent purchase from the late 90's where we chose function over solid form. The massage and heat have not been working for years; the recliners no longer recline. What were once proud, soft and firm seats have sunk down, revealing the wooden framework. The other couch has the back separating from the seat from repeated attacks from various attempts at gymnastics. Even the cats get vertigo when climbing on the back of it. It was probably our move from Sussex County to Monmouth that was the beginning of the end for Space Couch. It had just lost its mystique by then, not to mention a few screws, some wiring and structural integrity.

It had gotten so bad that we began looking at curbside couches as 'slightly used' compared to the disasters we we holding onto. The reason was pretty simple: Two years ago the couch was not THAT bad and last year we began the process of potty training. The thought was that after we got through the few months of training, we would scrap them for new couches. Well 13 months later, we have just begun the process with Grace; Livie has taken three times as long as we expected, she is only now really beginning to get a rhythm. The couches have borne some the brunt of this process.

So when my sister offered up couches from her garage, the choice was easy. No 'new' couch to worry about stains; we could get a year or two use out of these and if there were accidents, there would be no real hand wringing. The added bonus was that they were my parents' old couches. Not that there's any reason to think that there might be some kind of positive karma in them; Mary, my sister, says there's a 'mom mark' on it where my mother's head was for the last years of her life. At this point, we can use all the good karma we can get, and if 'Saint Therese' can watch over and help us get the little things done in life, that would be a great addition.

Now comes the task of digging through the crevices to find all the lost treasures from the past nine years. We've already found 3 spoons, two letter 'R's, a Game Boy game, a lost TV remote and lots and lots of JUNK! Space Couch is HEAVY and we did not have the manpower (nor the confidence in our carpentry skills in case they broke) to move them that often. It's like an archaeological dig; they always want to find the 'garbage dump' because that's where all the good stuff is. Every toy, every cup and utensil, every (yuck) pretzel that fell through the cracks is not part of the 'decommissioning' process of looking at each part of this sectional for hidden potential treasures. Coins, BAH! We're looking for GOLD; that missing puzzle piece, that 1 inch by 1 inch 40$ Game Boy game; the other remote that's been missing for 9 months; the unknown lost treasure that one of the girls stole and stashed in a crevice for a rainy day.

In any event, au revior dear Space Couch, may you be found in some future archaeological dig as an example of something that could not stand the weight of so large a family! Thanks for your service, don't let the door hit your cushions on the way out!

PS, yes that is NOT my couch but the first picture of a joke about whether you choose dogs or kids for you life...this is the picture of the dog, HERE'S the kid picture. Neither are thankfully representative of the true nature of my house, but there are occasions when it came close!

Troy Mom Taking Training Her Son's Class Into Her Own Hands

2008-11-16T13:00:00.001-05:00

I don't usually highlight and comment on autism happenings in the news, but that last interesting piece about PA and this next one just seemed to be noteworthy as great things that should be emulated. This one relates to a mother of a seven year old autistic boy. She has taken it upon herself to go into her child's class to talk about her son's autism and try and germinate understanding about the condition. One of my favorite examples she uses was this:

During her time with Ryan's class, Kessler brought one student to the front and asked the other students to make soft buzzing noises while she tickled the back of his neck. Then she asked him to try and answer a math question. The boy blinked a few times and stared back at the class, unable to respond. "It was hard to concentrate, right? That's what Ryan feels every day in the classroom," Kessler said. "These things don't bother most people very much. But some people with autism feel their senses very, very strongly."

I would think/hope that we could get school systems around the country to get with this type of program and have, not just an autistic presentation, but any class that has a special needs kid have a 'training session'. Ignorance, in my mind, breeds suspicion, misinformation, and eventually hatred and abuse. If you give kids the knowledge to understand differences, then they are far more likely to defend and to discourage bullies from abusing.

I'd love to see a major organization develop a lesson plan for a 1/2 hour presentation given by either a parent or the teacher themselves. When Grace gets mainstreamed, my wife and I are going to be there letting the kids know what autism is REALLY about, and not leave it to the imaginations of the students. ASA, Autism Speaks, you listening? Maybe I'll just go local and talk to POAC

PA Leads the Way Yet Again...

2008-11-13T22:30:00.000-05:00

Our neighbors to the west are beginning to put NJ to shame as far as offering autism services. First, it was the insurance legislation HB1150, that forced PA insurance provider to cover up to $36,000 in therapy services for autistics (you listenin', Corzine?). Now, they have done something for the over 21 autistics by setting aside $20 million for an autism waiver program that will offer everything from assistive technology to job placement assistance to counselling and crisis services.

Not being part of the group of folks that have to deal with adult autism services, I can't adequately judge whether the programs are better, far better or similar to other states' programs; it's just good to see an entire department in PA dedicated to autism services for adults and appear bent on providing sorely needed, targeted work specifically at a group that is most often overlooked. We just need to get that 200 person limit at least doubled, but good job, Governor Rendell! You may make me believe Republicans actually DO care! (and have a talk with that Corzine character across the Delaware!)

More info on Program

Karaoke Anniversary

2008-11-06T17:00:00.002-05:00

My wife and I just celebrated our 20th anniversary. Well, celebrated is not EXACTLY the word, it was a school night there was much to do, so the closest to a celebration was a cherry cheesecake my mom-in-law made. But, because of a little ingenuity and a little bit of nerve, I made it a special one.

You must understand, when it comes to birthdays and anniversaries, I have been the king of buffoons. I would forget altogether, remember last minute and try to slip out for a card, or make some flimsy excuse why I was late or forgot or whatever. Unfortunately, I can count on more than one hand the number of times I've done this; what can I say, I have a mind like a siv.

This year, since it was the big two-oh, I figured, I better do something original at the very least. For years, we had planned (more like fantasized) that we would all go on a cruise for our 20th. By then, we rationed, Livie would be 6 and old enough to go on a cruise (this was BA...Before Autism). Over the next 6 years, our world has turned upside-down, sideways and inside out. No cruise for YOU!

Having always been a Beatles fan, I personally always wanted to rewrite Sgt Peppers Lonely Hearts Club Band, with the "It was 20 years ago today" line as my basis for the anniversary song. I had never really sat down and done it though, until last week. Last night, I found my copy of SPLHCB and popped it into the DVD player and gathered the whole family into the living room. When Linda heard the opening strains of the song and realized what was going on, she used Livie as a shield to hide her face, she HATES to be singled out, even in the family. As I sang my heart out through the song, Jason wasn't exactly kind, not really getting what was going on, and was throwing mock vegetables at my performance. Livie got all wound up by my rendition, and it took her an extra half hour to get to bed.

I got through the song, pretty well I might add, and I could tell that I had FINALLY exceeded Linda's expectations for an anniversary gift. Think of it, no money spent; just a little bit of embarrassment and I WOW-ed her! I have to think of MORE songs to parody, any #25 songs out there?

OK, here's the parody, first person who comments AWWWWW though is gonna join Lucy in the sky with a bump on their head!

Sung to the tune of Sgt Pepper’s Lonely Hearts Club Band

It was 20 years ago today.
I took your pretty hand to say
That I wanted you to be my wife
And I wanted you to share my life

So let’s reiterate to you
The fact that after all these years

I still love you after 20 years…

Well, I still love you after 20 years
I’ll probably go for 40 more
I still love you after 20 years
I really even love you more

I still really love you
I still really love you
I still love you after 20 years

It’s wonderful to be us
It’s still even a thrill
We’re such a perfect match that
I just can’t believe I have you
I just have to pinch myself

Well I really want our love to grow
And there’s one thing that I need to know
I’m standing here on bended knee
In hopes you’re still in love with me.
And if you want to handle what’s in store
Will you love me for even 20 more?

Will you still love me when I’m 64?

SIX-TY FOUR?

Now THAT'S a Mandate!

2008-11-04T23:01:00.001-05:00

Congratulations to President Elect Obama. God Bless America and best of choices in your administration...

Our 15 Minutes

2008-10-31T11:15:00.001-04:00

Have you heard of us yet? We're all over the media? We make appearances, we're going to be recorded for radio, we're just plain county-wide!
OK, we're about as famous as the kid who lost his shorts during gym class, but we HAVE made some minor ripples in our Monmouth County pond. We had an issue with the girl's school, where rumor was the town that owns school building was going to kick us out and make way for a preschool classroom or two (we have 9 classrooms in the building). Well, someone alerted the media the day of the town board of ed meeting and here I am picking up Liv for a therapy session. I get suckered into a News 12 interview and I get my 10 seconds on the evening news; no news organization can resist an 'autism getting the shaft' story. Besides, they got the cutest shots of Livie in the car with her Koosh Ball!

Me and Lin say our piece at the board of ed meeting, a terrifying 30 seconds apiece talking in front of the SUPREME EDUCATORS OF OUR LAND...or at least 10 people seated behind cafeteria tables dressed up like conference tables; turns out they are just trying to appease an audit request and they are just trying to get a 'written' contract from the autistic school district. No immediate foul play for seen, but the future may be ominous...bah, who cares, the girls will graduate out of that school before then!

The REAL 13:50 of fame came on Tuesday. Several months ago, we got a call from a stranger, saying she was from the Holmdel School system. They were holding an autism awareness night in their town and someone at our school dropped Linda's name as 'THE' mom with the knowledge, the scoop, the low down, the goods on all things autism. What they didn't realize that what she DIDN'T have was nerve: she is terrified of pubic speaking! She listened to the message; re-listened; called me; had ME listen to the message, ruminated that she could not POSSIBLY get in front of an audience.

"I could be humiliated in front on THOUSANDS!"
"But, honey, the auditorium only seats 500."
"YEA, but what if it's FILLED??"
"Oh, comeON, the auditorium won't even be half filled"
"But, but that's more than 200 PEOPLE!"
"Don't worry, it won't be that bad", I said

Me being the shy, introvert with the dry and the desert delivery (YEA right, maybe if the desert's in VEGAS!), just blurted out:
"Hey, I'll go on stage with you, you'll be fine!"

That bolstered her into calling back and agreeing to the presentation. We would be one of about 6 different presenters and they wanted us to talk for about 15 minutes. Linda thought that 15 minutes was nothing, we could easily fill up 15 minutes of time with what she had bulleted out. I made the mistake of reminding her that, in speaking terms, I found that 15 minutes could be a very long time. I had the corporate mentality of having sharp-eyed VP's picking apart your data and asking pointed questions. In either event, I made her more nervous. I was now going from 'we're going to speak' to 'YOU are going to speak and I'll just sit back and add little comments'. I'm good at BS'n, but she's the real brains here with advocacy and therapies etc, so now, I'M getting a little nervous.

The passing weeks were spent writing a 30 second biography for the pamphlet; an outline of what we were going to be talking about; and finally a detailed bullet of ideas of talking points from early intervention to therapy to advocacy. All the while the unveiled threat that "Bill, you know, I'm going to just stand up there and NOT SAY A WORD. You are doing ALL the talking!" Even through all this, I could tell she was into it; if for nothing else than to make sure we did not make idiots of ourselves.

Well the Tuesday finally arrived, and Linda was unusually calm, but the weather was momentous. Rain in the morning and spots of SNOW (We DO NOT get snow normally in NJ in October) in the afternoon. "I'm sorry, but we're SNOWED in, Mrs Holmdel educator" was Linda's dream that day that didn't even come close to coming true. We talked about what we had written down on the sheets, but all the while the 'I'm not going to talk' theme continued.

Turnout was a little light, due to the weather; there was only 75-100 people in the room. We were 4th on the agenda, after a doctor and a few therapists. All had polished Powerpoint presentations and I feel we are doomed since we are 'winging it' with no graphics. But as the presentations wore on, I sensed they were losing the audience. We get announced and I begin my spiel. There's only one microphone and I crack a couple of jokes on how Linda's happier that way since she won't be forced to talk unless she actually steals the mic from me.

I start into our family and our history on how we started with the autism community. And all of a sudden, the mic's being ripped from my hand and Linda goes on a tear with the subject. I have to wrench the microphone back out of her hand to complete my thoughts and guide us to the next subject. Several minutes later, I falter for a second and WHAM, she's back to talking, now with a confidence and candor I knew I was going to get out of her. We passed the mic back and forth for I don't know how long, at LEAST 15 minutes in my mind, and the whole forum wound up running a little late, so It might have been 20 minutes. We finish and get rousing applause.

Afterwards, during question and answer, people are bringing up points we made that I barely remember saying, it was truly a blur. We were told that we picked up the tenor of the forum, people were indeed getting a little bored with the technical jargon and needed a boast of real life.

Best of all, we are welcome the next time they have a conference and even better best, Linda is willing able and actually EXCITED about the prospect. I'm glad I insisted and I think she is to.

And finally, our little Gracie was picked in the school to say the Pledge of Allegiance for a radio show they are doing about the school. I don't know all the details yet, I just know that we have the makings of yet ANOTHER star in the family; at least we're not getting famous for losing our shorts!

Don't Cure Autism Now

2008-10-24T16:30:00.004-04:00

It seems as if Frank Klein's essay "Don't Cure Autism Now" is missing from many links because of an issue with the home personal page that most set their links to. If Frank or anyone else has objections to me posting it here, please let me know, otherwise, here it is in it's entirety, I think:

"Cure Autism Now." "Defeat Autism Now." Those groups, and their
significant following of parents of autistic kids, are no friends of mine. They might assume that everyone shares their idea that autism is a horrible thing, and that it is obvious to all that autism must be eliminated. They would be wrong if they thought that. Like many fellow autistics, I do not see autism as a horrible thing. That is, though, not to say that I have nothing in common with the cure-autism crowd. Like them, I would like to see the suffering that can accompany autism to cease. I would like for all of the communication difficulties, the lack of self-care skills, the inability to live independently to cease to exist. That agenda is in common with that of the aforementioned groups. So why do I see them as the enemy?

Well, the answer is not hard to see. It's right there in the names of their groups, if you look. If they truly accepted us, as individuals that are equally valid, they would not be trying to cure us, or to defeat us. Intentional or not, that is how I interpret their efforts, and I am not alone in that line of thought. Being autistic is intrinsic; it is a part of who someone is, and it could not be removed (even if a cure existed)without irreparably damaging the person that once was. To cure me is to destroy me, and to replace me with someone else... someone more normal, someone that the more narrow-minded subset of the normal people can better tolerate.To cure autism is to eradicate people like me from the planet... to completely eliminate my kind. I see that as genocide. I do not see eliminating my kind as the "final solution" to the problems that can come along with autism.

The talk of autism as if it were a disease is in itself problematic; diseases are bad, after all, and as long as it is seen as such, the need for a cure will always be on people's minds. If "blackness" (as in being of the black, or negroid, race) was seen as a disease, there may be talk of a cure for that as well. People could point to the fact that black people, by and large, are less prosperous, less educated, and lead less pleasant lives than "normal" people (which refers to whatever group is large enough to declare their ways as being the correct ones). The same things could be said about autistics suffering because of who they are could be said about people that suffer as a result of their race. Of course, the difficulties faced by severely autistic individuals are far more severe than any problems based on race, but the point is that these difficulties, not autism itself, should be seen as "the enemy."

Think of the furor (or should I say führer) that would exist if there was an effort to "Defeat Blackness Now!" Even if it were motivated by a humanitarian desire to end the negative aspects of being black, do you think that the black people would support that agenda? Of course not; they'd be up in arms, and rightly so. The folly in eradicating an entire group of people to eliminate the suffering that some of them endure (and the burden they impose on the majority group, which would rather not deal with them)is obvious using this example. I argue that it is no different with autistics.

Many normal people fail to delineate between the things that are at the core of autism and the things that are associated with autism, but are not in itself autism. The line is obvious to most autistics to whom I have spoken; really, it is obvious if you want to see it. The most unpleasant traits seen in autistics are generally not the core autistic symptoms themselves.

These associated symptoms will be present in some autistics, but not all of them, and are not a factor in diagnosis. Some of these things are mental retardation, severe sensory issues, gastrointestinal symptoms,
over excitability, self-destructive behavior, et cetera. Some people see these things, see the suffering they cause for both the autistic and his caregiver(s), and conclude that the autism is a bad thing.

It is true that these bad things are a part of the broader autistic syndrome, but they are not core features of autism itself. It is these things that I would like to see the curative efforts be mobilized against. Not all autistics have any one of these problems; rather than try to eradicate autistics from the planet, why not eradicate the bad things about it? That makes the most sense to me. Blacks have a higher incidence of several diseases, the most famous being sickle-cell anemia. Rather than wipe out the whole race to end the suffering from such things, wouldn't it be better to try to fix the specific problems instead?

The problem is that many normal people cannot see past their own desire for conformity and their pack mentality to see that autistics, weird as we may seem to them, are an equally valid kind of person as they are, and not in need of a cure, or of fixing. They see the bad things about autism, see the suffering they cause, and make no distinction between that and the "weirdness" autism causes. They make no distinction between the things that cause disability, and the things that cause difference. It's all problematic for them; it all needs to be cured. That is short-sighted,and ultimately would prove destructive for the entire species, normal or otherwise. It is not hard to see that many of the great thinkers in society have had enough autistic symptoms to seriously consider whether autism is linked to genius (I have made the case previously, in my article entitled Autism, Genius, and Greatness). The link between "eccentricity" and genius is well-established; this eccentricity," as it stands, happens to look a lot like what we now call Asperger's Syndrome (AS). A disproportionate number of the great thinkers, scientists, inventors, and innovators in history had enough autistic symptoms, as documented in the historical record, to assert that they probably were on the spectrum. As it turns out, many of the traits of AS just happen to be the things that are needed by society's innovators and thinkers. Curing autism would make people like them more normal, but is that really what we want to do? To make a genius normal is to take away his gift; to take away the gift that geniuses give to society.

While the literature comments that about 80% of autistics are low-functioning (mentally retarded), that really is not true. It has been estimated that there are about four people with AS for every autistic proper. It is no longer much of a question as to whether autism is related to AS; it is now well-accepted that they are on a spectrum, and are indeed the same condition in varying degrees of expression. It has also been observed that people with AS are generally above average, often well above average, in intelligence. As such, autism is not a condition that usually causes retardation; as few as 16% of people on the spectrum are retarded. The 80% that is the AS group has a disproportionately large number of people with genius-level IQs. Since AS and autism are the same entity, only varying in degree of severity, eliminating autism would have the effect of eliminating AS as well.

"Curing" or eradicating autism to eliminate the problems of 16-20% of the autistic spectrum population, at the risk of losing a large percentage of society's thinkers, would be horribly counterproductive. Given that the lower-functioning people have the same genetics as those with AS (as can be seen in identical-twin studies where autism and AS co-occur in dentical siblings), it seems much more reasonable to find out why some end up low-functioning and why some end up as geniuses, and see if there might not be a way to prevent the retardation.

No one wants to see people suffer because of sensory issues, frustration from inability to communicate, or to be unable to live without constant assistance, as is the case with many autistic people throughout their lifetime. That does not, however, mean that the whole group, necessarily including the more able autistics like myself, must be eliminated. The formula is so obvious to me-- eliminate the awful things associated with autism, and celebrate and appreciate the wonderful contribution that the difference between normal people and autistics brings to society. Don't wage war against autism-- if you win... I mean, if you really defeat autism...all of society loses. Let's celebrate autism, and help autistic people to be the best they can. We'll appreciate it, and society will be the benefactor.

Family

2008-10-19T22:30:00.003-04:00

We had the planets align yet again and packed the entire family in the minivan and had a great time. Even though we could not find the back seat's middle seatbelt fo 15 minutes, we went to a family gathering at my brother John's house. We've had strokes of bad luck over the past few years (more like we had a stroke of good luck THIS time) in that SOMEONE has always been sick or not available or we were tired or dead or something or the other. In any event, we finally got our butts out of the house, and had a very positive impact on the gathering. It was really good to see we were missed (we hadn't ALL been to a family gathering since the diagnosis almost 4 years ago). It was REAL good to see my dad up from Texas, even though we did not have more than 10 minutes to talk. Linda and I were busy chasing Liv and Gracie around. Kinda the 'childproofing' syndrome from our younger child days, except this was 'autism' proofing. Gotta watch out for falling lamps being kicked over; HD flatscreens being stimmed and banged on; and very small and delicate objects being knocked over.

We realize how MUCH we let slide in our house at home. How we watch out for gum in our house, but if it gets on the rug or the table, it's not a big deal. Yea, Liv didn't have a piece of gum there. We fed her rather than letting her feed herself. It was a big thing to have her even there; we weren't going to press it by showing off her eating skills. My three other kids were just PERFECT. They didn't start fighting 'till we were in the driveway and the key was out of the ignition.

Thank you everyone for being so good, so caring, so understanding, so perfect. We have so many things going on it is very nice to remember we have a whole BATTALION on our side. Sometimes I forget...thanks...

The Battle for Sanity

2008-10-05T11:00:00.005-04:00

As previously communicated, we have been plagued with frequent night wakings, this morning was day 27 of the siege. It really has felt like a war. Thursday night was the girl's Tet offensive...or maybe it was just plain offensive.

It started for Grace as it normally does this past few weeks. She wakes at midnight, finds herself lonely, and decides to seek out mommy for companionship. She goes into the living room and finds a warm body to seek comfort with. She curls up by her head and goes back to sleep. From the other side of the head, a potentially explosive situation is brewing, because it is not my wife on the couch, but my mother in law. She barely registers that a human body has taken residence by her head, being a cat person, these things are common at night. But, the sleeping arrangement becomes increasingly uncomfortable as the restless Grace uses her as a lumpy mattress. Finally, grandma can take it no more. "Gracie, you need to sleep in the bed on the floor." The first two 'Mommie'-s were that of a frightened child, who had the mommie morph into some evil bloodsucking monster. The next two mommies were of desperation looking for that lost mommie. It took several minutes to calm her back down, but she finally realized grandma was not in the bloodsucking mood.

Meanwhile, back at the girl's room, Livie has also woken up. Hers is a more complicated insomnia as she will wake up a little more than every other day, and her times are more varied. Linda's chance at actually sleeping in her own bed shattered, she moves into Liv's bed. I...am in for it...

The first and fatal mistake is I did not properly crush up the 1/2 Clonidine. Either it did not get in her mouth, or she spit it out when she realized there was an extra crispy piece in her regular teaspoon of applesauce. Without benefit of hindsight yet, I tick the minutes before the Clonidine should take effect. 3:45 should be the magic minute. 3:55, stiiiilll going, OK maybe she's a little more feisty tonight. 4:15, something is wrong here, I'm in trouble. I put back on the nighttime pull-up she's pulled off as she will have the habit of taking it off when she's bored. I am getting kicked when I turn my back on her and she demands gentle scratches, massages and conversations if I face her. 5:54 am- the final attack. I thought I had heard her take off her diaper again a few minutes before. I had rolled over facing my back to her. Suddenly, the biological weaponry that had been banned through treaty streams onto my back. That word that rhymes with duck echoes through the house as I carry her back into her room.

My wife said she was so close to uncontrolled laughter, but saw the expression I wore and thought better of it. "SHE PISSED ALL OVER ME" I said through gritted teeth, I deposit Liv in Grace's smaller bed and go back to my own to find a dry spot. After stripping the sheets and mattress pad, I still find a semi wet mattress cover (plastic coated, of course for just such an emergency). I insert a towel and collapse on the unmade bed. I don't even drift because I knew it would happen before it even happened... I knew it was coming... "WCBS radio, it's 6:08, time for traffic and weather togeth.." snooze? Yea, right...

I did surprisingly well for 4.5 hours of sleep Friday. On a somewhat positive note, Linda DID get more sleep than she had in a week. Grandma, who did 10 years as a nurse on the night shift seemed unaffected.

We have mounted an offensive of our own this weekend. Thankfully, Friday Liv slept and we hit the Clonidine correctly last night just right so I got some decent sleep, allowing Linda to work on Grace's habitual need for companionship. She keeps sending her back into bed, eventually lying next to her until she drifts off. We knew what Grace's insomnia was and how to deal with it, and had just been too exhausted to implement.

We're still trying to figure out Liv's issues. It could be some complex yeast imbalance, just plain old stomach discomfort, even a desire to pee in the middle of the night that she can't quite express. But we need to divide and conquer before we can assault her issues. An army cannot fight without sleep...

I'm Glad Their Priorities are Straight...

2008-09-26T15:00:00.002-04:00

I debated posting this, since it was so short, and since I should really be focusing on the current financial crisis and the bailout proposal. But since Sen. McCain can debate tonight, I guess I can post a quick post:

Linda got a call from the school today, went something like this:

"Yes, Linda, this is the nurse from Grace's school. We wanted to let you know that Grace ate a piece of crayon today. But please, rest assured that they ARE Gluten/Casein free. Another child had eaten a whole crayon and her mother checked up on it and found out they are indeed GF/CF."

I'm just glad to see that we first have them properly trained on GF/CF protocol and that they are working hard to make sure that all foreign objects my children eat will meet their dietary requirements. I'll also be happy if they minimize stimming on bagel knives and redirecting fixations on small house fires...

More Sleep Deprivation

2008-09-24T16:50:00.001-04:00

I scanned back through my old blogs to see how long it's been since I complained about not getting enough sleep. It's been long enough, time to vent again:

The past month, basically since before school started, we've been having the tag team twins of early morning madness keeping us on our toes (and stubbing them in the dark!). It seems like the past 3 weeks it has been every...single...night. Sometimes, it's Liv; other times it's Grace. Sometimes, one kicks off the other and we get both in the ring at the same time (I have to check the WWE rulebook, I'm sure two in the ring at the same time is not allowed).

All this leads to some pretty unorthodox sleeping arrangements. Grace is a restless sleeper and it's not uncommon for her foot to wind up in my face or for her to fall asleep sprawled out over the both of us. Our remedy is to send her out to the living room on a kid's futon with Linda on the couch. On more than one occasion I wake Linda up in the morning, looking for Grace, only to realize that she's curled up at her head like a cat or scrunched behind her wedged like a puppy in a brood.

Liv is another animal. We do have and use Clonidine to calm her down if she wakes up, but we like to leave a gap of at least 4 hours before she has to wake up. So before 3:30, we can use it, after that; one of us has to deal with her antics because she will often go 2-3 hours before konking out. I'm usually the one taking the hit on that, Linda escapes to the couch. It's interesting trying to sleep while holding on to a toe or holding her in place. Interestingly enough, she has the most 'pop outs' during the night and she will frequently go through her list of words she knows and I will respond in kind. "Da da, juuu" "No, I'm sorry honey no juice, go back to sleep".

The only other saving grace is that Liv will not open the door and come out. Grace though, will open the door and will request the door be open whenever she's conscious. So, it'll be Grace that will show up at our door in the middle of the night like a ghost. Liv will just take advantage of the opportunity to get out as well. Her preference though, is to go in the living room and turn on the lights and TV (THAT'S a wild wake-up call!).

A week or two ago, I heard Liv on the monitor, went to open the door, only to find both up like Pop Tarts (uh ooh better explain that reference to a link, in case Pop Tarts are not a global thingy). I stood there for a minute trying to get my logistical brain to function. "Two girls up, where should Livie go? Is it past 3:30? Are there any potty accidents to consider?". I can't remember much about that night, I only know that Linda and I had two different bedmates in the morning...

It really sets a bad tone in the morning, being down 2-3 hours, especially when Linda has her bursts of energy after they go to bed and winds up staying up late catching up. This morning, it was Grace who was up at 5; getting her to rise at 7:15 is like raising the dead, since she can sleep on anything in any position. I took away her blankets...no movement. I stood her up; she leans back on the couch and sleeps half standing. Finally the thing that aroused her was "Grace, do you want pink game?" Grace is absolutely addicted to Nintendo DS and we try to limit her; but these are the occasions you hold it back for, and we did get her up and ready for the school bus.

Sometimes there are reasons, like Grace having an ear infection 3 weeks ago; sometimes we just scratch our heads as to why and what is causing them to wake up. We certainly hope that it's just a restless spirit and not a pain and discomfort reason. What makes it difficult is always the lack of communication to tell us when there is something really wrong; when it's just a nightmare, or a bathroom urge or a thirst or whatever. Jason will wake up probably more than once a month, but we usually get the scoop (although sometimes he's a walking zombie talking nonsense).

Humina Swajusay Huh?

2008-09-19T14:30:00.001-04:00

I'd like to take comic license on a recent conversation with our insurance company. The conversation isn't entirely true, but the gist is here:

We had found out in the summer about a program where another insurance company was offering grants to help pay for therapy expenses not covered by our insurance company. We applied for a grant to cover Liv's occupational therapies, since they don't consider covering 'chronic' conditions. The deadline for completion was September 30th and we submitted around the 4th of July. We received notification in the beginning of September that grant needed amongst other things, a denial letter for Liv's apraxia, since that is how we worded the application, we only had a denial for autism.

NEVER throw down the gauntlet in front of my wife. Less than 30 days, getting the required paperwork. Coordination and insurance document acquisition is her specialty. Got the info from the Ped Neurologist, from the therapist; got a package of all the info needed to send to the insurance company and sent out the fax; probably took less than a week. Now comes the fun part; the call from the completely baffled clerk who wound up with this on her desk:

Ins Clerk: Hello, yes I'm calling about the fax we received yesterday regarding your daughter, Olivia
Linda: Yes
Ins Clerk: I wanted to let you know that we have to send this in for review, but occupational therapies are not usually covered for chronic conditions.
Linda:Yes, I know that I was looking for you to deny it.
Ins Clerk: I'm sorry, you want us to deny this? (Clearly, 'thank you sir, may I have another' is not covered in the "How to screw the Client" manual)
Linda: Yes, I am 99% sure you will deny this, we need a denial letter in order to apply for a grant for non-covered insurance expenses. We need it quickly as we have a Sept 30 deadline to apply.
Ins Clerk: We I uh....the review process has to go to another department and it usually takes 10-15 business days.
Linda: That's if you are evaluating it on whether it is going to be covered, I'm asking that you DENY it. (I mean, this is something that they do with deadly efficiency normally; it's page one of the playbook: DENY)
Ins Clerk: I'll see if I can get the adjuster to look at it, you DO want it denied, right?
Linda (somewhat exasperated, but remaining cool): Listen, you can either PAY it or deny it. Since I'm almost certain you are going to deny it, I only ask that you do it quickly (Lady, I'm painting a target on my chest and yelling 'KILL ME NOW', just do it!)
Ins Clerk: Well, uh, alright, I'll give you a call back

She gets the call back yesterday to say that indeed they were denying it (sorry, I don't have the strength to try and reproduce the conversation between the clerk and the adjuster). We're awaiting a fax copy of the letter. Of course, it's delayed, you couldn't expect them to have reprisocity ( I have to leave that bad spelling of reciprocity in, it made me laugh!) and make OUR lives easier after giving THEM such a slow pitch!

My wife is currently reviewing back issue of Soldier of Fortune Magazine, in case these yo yo's screw this up. It's bad enough that they don't give me THEIR money, but if they deny us the ability to get money from others WATCH OUT!

It was a day like any/no other...

2008-09-11T13:15:00.001-04:00

It was a starkly beautiful day, blue on blue skies probably average for the time of year. It was primary day I remember. I was in the throws of the latest project at work, whatever it must have been. I remember the internet was unusually slow as I tried to find out about what my wife had called me about. Pictures were just starting to become available on the internet, in a format that didn't take 2 hours to load at least. I remember hearing more and realizing that something was terribly wrong.

I remember the person who told me the South Tower had collapsed; I remember telling people about the Pentagon. I remember them calling us into the largest meeting room we had and saying we should all go home, be safe...and pray.

When I got home, I remember finding a dead kitten in the road in front of our house and being so numb to it as I moved it into the bushes. I remember telling my kids what had happened and saying that what happened today could never be underestimated. I worried about my family, they country and the world.

I remember all the firefighters, so many firefighters, that were lost. I remember the candle I set out on a rock outside every night for days on end in the hopes that it might help find someone alive in the rubble. I remember finding out about Father Mychal Judge from the picture of him being carried out of the rubble; the priest only trying to minister to the injured and giving last rights to the firefighters he worked with. I saw hundreds upon hundreds of picture that disturbed me to the bone; of the attack, of the people, of the masses of humanity dazed, bewildered and obviously changed.

I remember the quiet at night from the lack of planes in the sky over the following weeks. I remember the static I heard instead of radio station which had lost their signal that was on the radio tower. I remember the lack of Channel 13 on TV for the same reason and the total lack of commercials for weeks. I remember the eerie quiet at night from the lack of airplane activity, and the times I did hear the sounds of F16's. I remember averting my eyes from the skyline when I drove to spots where I could see a gap in the way I expected to see it.

I guess this is not much of a tribute to those who lost their lives that day, God knows I've never looked at firefighters the same way again. I just wanted to put down what will probably be ingrained in my mind for the rest of my life, for the rest of all our lives. God Bless America and never forget...

It's the Most Wonderful Time of the Year

2008-09-08T12:30:00.002-04:00

Getting them back to school that is. I really think that song should be reallocated to back to school. Let's start with some random thoughts:

Book Sox- anyone want to lynch the person who's marketing these? Between Book Sox and scientific calculators, these two items took up probably the majority of the near 200 dollars we spent at Staples for back to school supplies (OUCH!).
Nervous/depressed kids- I don't know about any of you adults out there, but in retrospect, I LIKE to learn new things; but my oldest daughter referred to school as a subversive plot to imprison the masses of children this morning.
Back to school night- otherwise known in our household as "How are we going to clone ourselves THIS year? I do like to meet the new teachers but, as far as the school systems in our town, we're old pros, not like these 'amateurs' with one or two kids that want to see what the cafeteria looks like. We should have some kind of easy pass where we can go to the front of the line and get out to the next one...
Paperwork- The amount of information they are asking from us nowadays borders on encroachment of privacy. If you think one of two kids in school is hard, try 5! Linda was up until one in the morning answering questions on the 'getting to know you' page like 'what's your child's favorite TV show.' Grace's teacher wants BIOGRAPHY! I just think we need in boxes and outboxes; I know, my office mentality showing.

Well good news is that the girls are in a school with good programs, Jason's in LOVE with his teacher (shhh, don't say we told!); Aly's has all her friends in the same lunch; and Dillan yet again has an opportunity to become Mr Popularity (he only knows a couple of kids from previous years, but this kid gets along with ANYONE, he'd make friends with the Grinch after 3 weeks in class).

Linda has 5 glorious hours of freedom between when the last one leaves and the first one gets back. Of course the law of linear sicknesses will have at least one kid home roughly half the school year, but we won't reminder her of that eventuality. Heck, we might even get caught up before the fist wave starts. Hope your school start is going as well as ours, and those without kids can stop laughing now, yea, nothing to do and all day to do it...hammock comfy?

N'orleans

2008-08-31T09:15:00.000-04:00

Obviously we pray that all people will stay out of harms way as Gustav looks to be heading towards LA. But, if it's possible to pray for a city, New Orleans needs all the help it can get. I fear this may be a death nell for the city. I'm not so sure that Katrina and Gustav are just devastating coincidences, and we might be seeing the beginning of the end of this major Gulf Coast city.

Bring on the New School Year

2008-08-26T22:30:00.004-04:00

We're on vacation this week. So far we've been on vacation from two things you would not expect. We were on vacation from electrical power on Sunday for 7 hours; we've also been on vacation from normal sleep patterns as BOTH girls have been waking up at night. Lucky for us, we can adjust OUR sleep patterns and get our full 6 or 7 or 8 hours of sleep.

This week is also the week of testing the new schedule. We have them both in camp from 9 to 1. It's incredible what you can get done in that amount of time. Linda has the potential to get at LEAST a 9-2 out of the fall schedule as both Liv and Grace will be in the same school. I may have mentioned that this is the longest break Linda has had since Jason was...wait since Dillan was... since Aly was...heck EVER! This is going to be a monster year for determining whether we can get enough hours out of the day having both in full time classrooms. A whole buncha new things are coming in 08-09 but that is the key. 5 hours of freedom to get done what needs to be done. 5 hours to see whether the 'base' of their education/therapies will be good or bad. School is where all drives from; if we get good teachers and aids and therapists, we KNOW we have good private therapists, so things will go well, but we need that good base to launch from.

Yes 2008/2009 will decide much in what we do and how we do it. The other three are in a steady state; same schools, basic same routine. But Grace and Liv drive the mood and tenor in the house; where they succeed or fail the rest of our mood/household follows. If may sound extreme, but it IS 40% of our children and a larger % of our efforts. May your year go half as well as I expect our year to go....

TOOK A LEAP...

2008-08-20T12:45:00.001-04:00

Some may think that a night out with the family is no big deal. But when you are seven and two are autistic, a night out with all seven of us has NEVER occurred. All that changed last night thanks to an organization called POAC and a restaurant in Aberdeen NJ called The Court Jester. Forget that we barely FIT all of us in the minivan, forget that any number of things could have set the girls off. I walked into this restaurant expecting to explain "Well YOU invites US" and having at least two of the family waiting for the rest in the van at the end of the night.

Well the evening went off without a hitch. Hardly an outburst from either child; no major fighting between the older three. People coming around every now and again willing to take a child off our hands to entertain them while we eat. It was great to have volunteers from both POAC and New Horizons in Autism there willing to help out. A gluten free menu was available, although we had backup food which proved to also be a lifesaver since both rejected the fair.

What was really great was the sense of community I got out of the experience. We are somewhat isolated in who we interact with; we really only see parents and children in our own age group at the current school. It was nice to see varying ages of autistics, from toddlers to adults all enjoying themselves. It went so well we thought why we hadn't done this in a 'real' restaurant. But I think having that ability to let our hair down, have an occasional 'whoop' come out of Liv, that a sense of worry might have affected our mood and made it more probable that a meltdown would occur. It's a shame that people in the 'real' world can't get over their need for quiet, perfect enjoyment of their evening to accommodate our differences.

Speaking of, one of Grace's aids was there and almost didn't recognize her. You see, last week we had a bit of an incident where a pair of scissors went missing and Grace decided it was time for a makeover. Thank goodness no major accident occurred, but the styling job she did on her hair left much to be desired. She has 1 inch long bangs now and a good sized gash of hair missing from one side. It took a professional to get her to the point where she did not look like a train wreck, but no one in their right mind would have chosen her current 'bob', to put it euphemistically.

So, we may now have a once a month date at this restaurant since they are planning to do this monthly. Hope to see you there...

DAD'S TAXI SERVICE

2008-08-18T12:40:00.000-04:00

WOW, almost two weeks without a post! But between my physical therapies during the week and just stuff backing up over the girls being done with summer school, times are tough for free time.

This weekend was sort of a blur, but refreshing because I actually got out of the house a couple of times. The first was yet another excursion into the paranormal. No really, ghost hunting has become a hobby. It's cheap (put out maybe 100$ for equipment and 20$ for a lifetime membership to the NJ Ghosthunters Society; it's conveinient...the cemetary investigations start right around when the girls go to bed; and it lets me utilize my internet investigation techniques to find out about various histories of the area around Monmouth County. Won't get into it all here, maybe I'll start a new blog, rather than clutter my autism blog.

But the real fun started on Sunday morning. Liv has been housebound for several weekends, I had been worried about my ability to lift her over these last few weeks so we hadn't gotten out. Grace was stricken with an ear infection that we discovered on Saturday (and that *I* was the one to push to have her go to the doctors for once). I'm gearing up for the afternoon around 1:00. Aly had been pushing to hang out with her friend, she gets hold of her and decide to go to the movies. 2:10 showing, I have to shower, but I can make it. 1:30 getting set to go, packing Liv to take her along. Dillan gets a call from his friend...playdate at the friends house. OK, I can drop him off first, tell them you'll be over in 10 minutes. Get a little delayed, call Dillan's friend shift that to 1/2 hour. Pick up Aly's friend, drop off at the movies; drop off Dillan. I am now free to roam about the county for the next hour and a half.

Things didn't go as planned for me and Liv. Local bay-front, Laurence Harbor...packed to the gills, both parking lots; swing back around to Keyport, flea market, that lot's packed too. I remember a dirt road back around Union Beach from my travels and decide to take a chance. A quarter mile hike on a road lined with reeds yielded a neat little outcropping on the bay during low tide. We got to wade through gentle flowing water and tide pools full of little fishes, seaweed and hermit crabs. She has a lot of her sensory issues in her feet so the varying sand softness, the shells and water were just to her liking. Fisherman wading 100 yards out into the shallows, a Mexican family clam hunting in the reeds, a photographer taking shots of the scenery and dozens of sailboats dotting the bay and it was a nice little distraction we had to leave all too soon.

Back into the car to pick up the girls at the movies; drop off at her friend's house. Hit up a new take out place for a menu, check out a new supemarket in the area. Back to get Dillan, head home for the dinner break, then back out for my final pickup of Aly. The 1 to 9 shift is finally over.

Certainly not the day I had planned, but all in all a great tour of my local Bayshore area...and I wore Livie out with her being a co-pilot...

DOORS

2008-08-05T19:15:00.000-04:00

Reading through my last post, I realize that there is a back story about something that is critical in the lives of, not only parents of autistics, but of parents in general...and that includes those of you who are parents to the four-legged variety (all living breathing beings for that matter). Doors play a critical role in all our lives; I'm not sure if they play a more critical role in our household...you be 'da judge.

We have 11...no, make that 12 living breathing entities in our house, including the one fish. Each has their own unique needs for containment and/or access to the outside world. Fish, no prob, self contained, we only have to watch out for unwanted intrusions from the 4 felines and Liv who loves to stim on the water. A little duct tape and we're set. Next, felines...so, you have to keep them inside...check, don't leave doors open. They need access to the garage to do their bidness, kitty door...check. Our newest kitten has a little specific incontinence trouble (she likes to pee on bathroom floors), right now she is relegated to our room with her own littler box. I think this is where it begins to get complicated.

Bedroom door shut to keep the cat in, that works for the most part, except for the girls. Livie cannot open doors, so we're safe there. Grace, however knows no boundaries, can and will open all doors. I also made the unfortunate mistake of unlocking the bedroom door in front of her. Now she is always on the lookout for coins to unlock the bedroom door. Livie DOES however like to shut doors. They're like a tagteam, Grace is the security expert and Liv is the mastermind. Unlock the door to look for mommie, let the cat out, Liv goes in and shuts the door after. Now, cat is out, Liv is in our room potentially doing damage to our computer or whatever. Luckily, Grace is locked out and complaining; there's our alarm. Get cat in, get Liv out; all is hermetically right with our world.

Now comes the full effect of the human/door/animal interactions of the house. The gate and the doors to the outside world pose the greatest challenges. Grace, the locksmith, has already proven herself many times with her Houdini like (lemme get with the times, Criss Angel-like) escapes. Her two latest accomplishments are using stepstools to get to the front door chain and discovering that there is a back door slider that is sometimes open. That on top of her ability to open the child proof gate and unlock doors and she is virtually unstoppable. Thank Gawd she hasn't discovered she fits through the cat door in the garage! So, in and out of house must include a lockup or a designated lockee for after we leave. Likewise, when someone comes in, the doorbell sounds and someone has to let 'em in. We USED to have the older three go through the back, but Grace is now a threat. Chain, lock or gate undone...BIG trouble for the non-do-er.

At night, we also have special challenges. Since Tim Allen resides in our house, the girls' door does not quite bolt (yea I'll get to moving that latchy thingy next weekend), so unless you close it JUUUUUST right, anyone can leave, and they do. Nothing like having Liv come in our room at 2 am and turn on and off and on and off the light. Or maybe she'll go in the living room and turn on the TV. How about she goes into the bathroom to start the great flood. Or Grace come quietly in the shadows of the room like a gremlin and squeeze in and begin reciting a Big Comfy Couch episode. WE HAVE A JAILBREAK...

I guess, looking at it from the 20,000 foot level, it ain't all that bad, it just seems at times all I do is worry about who's where and what are they doing behind closed doors...or outside of them.

Friggin' Kite Eating Trees

2008-07-28T13:00:00.001-04:00

I suppose everyone can relate to Charlie Brown. From the kite eating tree, to the losing-est baseball team, to Lucy pulling the football at just the last minute, we all get to feel that 'nothing's going right' feeling. Well, you are all just posers because, as the line in the X-mas special goes, "of all the Charlie Browns in the world, [I'm] the Charlie Browniest".

My wife asks me why I'm so cranky all the time. "Not right now, per se," she says "but just in general." I gave her one of those blank stares; of course I am cranky, it's one of those things I need to work on: temper and quick frustration threshold are two of my worst traits. " I don't get to have ANY fun, and even when I try, it turns into a disaster!" Then I proceeded into a tirade that I did not perceive to be all THAT funny, but she receives with convulsive hilarity:

"You wanna know why I'm so cranky? You wanna know?" I said in my Kramden-esque voice. I had purchased online last week what I thought was the perfect mid-summer game-booster, something called a Bax Stop, an inflatable back stop for the games the boys have in the cul-de-sac, a game that's combination, stick-ball, wiffle-ball and baseball. They use a big fat plastic bat and a tennis ball; but they always have to use a player as catcher; this inflatable contraption would have put an extra player on the field, and settled balls and strikes to boot. I would be hailed as the grand summer saver, making the summer classic...classic-er. The Bax Stop was not only an incredible bargain at less than half the price it normally sells for, it came with a bonus electric pump making it the deal of the year... as well as being the hit of our little world.

I would suspect you have an idea of where this is going. I inflated it fine, but I spent the better part of 1/2 an hour trying to figure out how to tie the net to the backstop, only to discover that I had missed a critical piece of string that 'tied' the whole thing together. 10 minutes later, the net intact, I make the grand presentation to the gang. Appreciative ooos and aaaahs in front of our driveway...just as I had planned. "Let's bring it over to OUR driveway and get a game started." one of the neighbor's kids said. My good feeling work done for the day, I retire to the garage to find a plumber's 'snake'; Liv has thrown an unidentified object into our toilet, and no amount of plunging has sped up the flow. I need the snake to see if I can push whatever it is through. Ultra-dad AND Bob Villa in one day...could it be possible?

10 minutes pass; no snake in sight. Then Dilan calls from the font door, "Daaaad? The Bax Stop's got a hole innit! I think Jason stepped on it." Across the street I go, with the insider info and accuse Jason without benefit of jury. He bursts into tears, a sure sign of a guilty verdict. Meanwhile, my once virile Bax Stop has become viagra-less; the boys had tried some duct tape, but the patient was not responding. Back to the backyard for the Bax Stop; I retrieve the only two bandages that come with the unit. I open the duct tape that was already applied...it's not looking good. A seam rip a centimeter long;. One patch and the medical students surrounding me proclaim "It's still leaking!" I put the second one on..."It's leaking on the OTHER side of the patch now!" Much as my medical knowledge hates it, in desperation I call for the duct tape (actually packing tape). Four strips later I declare the patient dead, with objections from the medical peanut gallery. Monday morning surgeons ensue detailing what we should have done, one asks "You gonna call the company? It's defective!" An hour ago, I was victorious in my Superdaddom; now I just get rid of the 'dad' part and that's how I felt.

Back to today, I keep throwing one liners at Linda, to continue her gasping for air in laughter. I realize that despite my nominal failure, I CAN make some good out of my tragedy. I renew my resolve; I CAN make some good this weekend (I WILL kick that football this time). I resume my search for the snake in the garage. I find lots of other fun things (two year old Easter candy, a pennywhistle etc) but no snake. I DO however find a reasonable facsimile: something I bought 4 years ago, a vent brush, for cleaning dryer vents. Right size good length...I'll give it a try. Unfortunately, the cord does not have a wire core...it's hollow plastic. And in my bathroom, I have a brush eating toilet bowl. Hello Rotor Rooter? Bob Villa has eluded me again, replaced with Tim Allen...as usual.

UPDATE...$147.00 later, the mystery object is discovered. A Dora truck was lodged in the bowl deposited by Liv during one of her disceet excursions into the bathroom. As our local Rotor Rooter rep said "Too small not to go down; too big to get through." At least I know that my efforts were in vain and we would have needed to call a plumber whether or not there was a brush stuck in the bowl. All the kids were certain that the Rotor Rooter truck in the front meant that Jason and Grant were visiting from TAPS.

One Step Up, Two Steps Back

2008-07-25T21:30:00.000-04:00

I guess it's not that bad, it's more three steps up and one back or something like that. Oh wait, let ME take a step back. Grace has recently made some significant improvements in her behavior regarding patience and her ability to 'hold it together' when things don't exactly go her way. But last night my wife Linda sat me down and was very upset about the fact that Grace has been very echoic lately and not answering questions, but instead just repeating words back to us.

A month ago, she had, for the first time, SHOWN my wife where she had gotten hurt and had begun answering questions in more than one word answers and had not needed to be prompted. For those with kids not on the spectrum, you probably watched milestones like this just whiz by, like markers on a highway; for us though, these are milestones are more vertical in nature, like hitting the 10,000 ft marker on the side of a mountain. So, the fact that she had slid back to on these skills was quite disheartening.

It turns out that the teachers and aids, who have been doing a wonderful job at working her behavioral issues, had underestimated her abilities from a language perspective. Instead of pushing her for answers to questions, they had been prompting her so she had become 'prompt dependent'. For those on the planet Earth, that means that when the held up a ball, instead of saying "What color is this ball?" and waited for and even pushed for "The ball is blue", They would say 'Gracie, what color is the ball? Blue. What color is the Ball?" and then grace would answer one word: "Blue". This method is great when you are trying to get words out and building up the child's question and response, but if they're already past that, it brings them back to a simpler time.

Big todoo anyway, notes flying back and forth, they are going to quickly 'fade the prompt' and get her on track. Part of the issue with this school is that Grace is a little too high-functioning from a language and play area; her real issues are with socialization and transitions. Sometimes if you are not explicit with the teachers, they kinda revert to 'simpler time' and somewhat expect the child to be lower functioning than they are. We are still happy with the school but we are just frustrated that we are halfway through the 6 week session, and she'll be hard-pressed to get her 'non-prompted' abilities back by the end of the session. It's all about not regressing in the summer sessions, after all.

It just goes to show you how easy it is to not be coordinated between the schools, your therapists and your child's needs and abilities. It also shows how nutzo some of us parents get with the details. I'm not sure whether some 'normal' parents go nutzo on the details or maybe within the autism parents' circles some let it slide and some are nutzo. I guess I'm just glad that we caught it and we can do something about it...

Of Course You Know, This Means War

2008-07-24T12:30:00.001-04:00

That's the phrase from the old Warner Brothers Cartoons that came to my head when I read about this site:

Opposing Views Launches As A Debate Site Where Experts Go Head-To-Head

Getting average know-nothings to create content for your site is easy enough and well understood by now. But how do you get experts to create in-depth topic pages about the hot-button issues of the day, complete with videos, links, and healthy commenting? Russell Fine is trying to do that with Opposing Views, a site that launched a few hours ago. It pits experts against each other on topics such as the economy, global warming, health issues, and politics. "We are trying to create a site where people can get well-informed on a topic quickly," says Fine.
Opposing Views is an information portal disguised as a debate site. Experts debate hot-button issues, and readers can comment and vote on who they think is right.

And, of course one of the first debates is the vaccine/thimeresol/autism debate. Get your tickets, ladies and gentlemen, this should be an epic battle:

http://www.opposingviews.com/questions/are-autism-and-vaccines-linked

Have fun folks...

Tame the Savage Beast

2008-07-21T21:00:00.001-04:00

I'm going to continue on a streak of two politically charged posts in a row, and attempt to assist in a groundswell to get the Michael Savage character off the nationally syndicated airways. If you haven't heard his comments, here is what he said on his radio show a few weeks ago:

SAVAGE: Now, you want me to tell you my opinion on autism, since I’m not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden ⎯ why was there an asthma epidemic amongst minority children? Because I’ll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], “When the nurse looks at you, you go [fake cough], ‘I don’t know, the dust got me.’ ” See, everyone had asthma from the minority community. That was number one.Now, the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That’s what autism is.What do you mean they scream and they’re silent? They don't have a father around to tell them, “Don’t act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.”Autism ⎯ everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, “Don’t behave like a fool.” The worst thing he said ⎯ “Don't behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.” That’s what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl, and you’re turning your nation into a nation of losers and beaten men. That’s why we have the politicians we have.

Originally I thought, let it slide, he's a nobody looking for publicity. Then I found he is the third most listened to talk show host in the US. This guy has to get thrown out into the street. So we all started our letter writings to the various sponsors. I got to writing to Anheuser Bush and I got stuck:

Dear Sirs...nah that's sexist
To Whom it May concern:
As a lifelong consumer of your product...WAIT what am I? A confessed former underage drinker?
As a consumer of your product...nah, sounds like I'm drunk right now.
As a current user of your product...same problem.

I hate copying and pasting the form letter into these internet 'send us your comments' things, once they see that pattern aren't they going to just throw it into the virtual trashbin?

OK, here it is:

As a user of you product, I would like to call to your attention that one of your outlets for advertising, The Michael Savage radio show nationally syndicated has taken a severe and disturbing turn. Recently, Michael Savage saw fit to disparage all individuals suffering from the disorder autism, calling them everything from brats to idiots and claiming that parents of
autistic children are involved in a 'racket' to bilk the country out of services.Of course, if you ask people at your company with autistic children (there are statistically more than 1 out of 100) you will find that they are in serious need of help in their day to day lives, and these comments by Savage are not only hurtful to them personally, but also perpetuate a decades old prejudice
that will cause children who desperately need services to not receive them.
I implore you to reconsider advertising on his show. Realize that, with the rate of autism climbing from 1 in 150 (my state of NJ has an autistic rate of 1 in 94), he is offending at least 10 percent of the population indirectly or directly, as well as much of the rest of the population, especially those with disabled children. I trust that you will arrive at the right conclusion and
pull your advertising from the show, thank you for your consideration,
livsparents
NJ
Father of two wonderful autistic children
I hope that we can create enough noise to get this guy thrown off the air. Apparently, he was thrown off of MSNBC a few years ago for attacking the gay community. Let's hope he's on the street in no time...

Is It Time for a Lunch Counter Sit in?

2008-07-16T16:40:00.002-04:00

I'm not sure why this one got me so incensed. Maybe because I feel for the mother. Or I 'feel' something different toward the good 'ole boy Chief of Police (who apparently knows the family and the situation). Or maybe it's the 'we want our quiet enjoyment of our meal and no re-tard is going to disrupt that' attitude I get from the article. In any event, anyone want to carpetbag into Jackson, SC with me and do a good old fashioned sit in at the lunch counter to protest the treatment some get for 'not being able to control their kids?

Family ordered to leave restaurant because of crying child

JACKSON, SC (WIS) - At first, Gail Martin says she wasn't sure who was yelling at her to leave the Buckhead Café in Jackson. It turned out to be Jackson Police Chief Dennis Rushton, asking Gail and her family to leave.
"I didn't know what he was doing," Gail's daughter Lauren said.
The family was just about to order when 4-year-old Alyssa began crying; she suffers from autism.
Gail says Chief Rushton yelled across the restaurant again.
"He said, ‘You need to pick her up and you need to get out of here now,'" Gail said.
Lauren is upset with the chief.
"That was very mean to say -- just very mean," Lauren said.
The embarrassment was too much for Gail and her daughters, who soon left the restaurant.
"I wasn't embarrassed of Alyssa's behavior, I was embarrassed of the way it was handled," Gail said.
Chief Rushton would not make a statement, but he did say he felt Mrs. Martin's daughter was being extremely loud and bothering other customers.
Even though he knew the child was autistic, he said he did ask the Martins to leave.
Gail says she feels like Chief Rushton should have been more understanding about what was going on with her autistic daughter.
"We can't just lock them up, they have every right to be out in public like everyone else," Gail said.
Now Gail hopes her story will bring more awareness about autism.
"If it can happen in a small town in Jackson, it can happen anywhere," Gail said.
Chief Rushton says he is open to going through training through the South Carolina Autism Society to help him better understand the condition.
Rushton also says his police commissioner has invited the Martin family to meet with them at City Hall.
The Martins say they are open to meeting with the commissioner.

My favorites are the responses from the general public after the article:

As you can imagine, people have had plenty to say about this story.
Viewer Roger said, "The family should have known better than to take an emotionally disturbed child into a restaurant. When customers pay to enjoy a nice meal the last thing they want to endure is an uncontrollable child."
Please people! Learn how to control your kids and yourself. It is YOUR responsibility to keep your kids civil while in public. If you are unable to and fail to leave and just expect people to understand... you are a bad parent, bad citizen, and basically a bad person. Don't burden other people with your problems.

Let's take a different tack at this and see how the 'Cheif' would be viewed if say, a child with cerebral palsy in a wheel chair was dining at the same restaurant. Would it be right to tell the family to leave because the child was drooling or making patrons 'uncomfortable'? Of course not. What about a child or adult with Downs who was clearly mentally disabled... do we kick them out, Chief? Boy, what would you look like a day after the elections? I guess it's OK that because this child's specific disability can be construed as bad parenting, so it's OK to just override their civil rights and tell them to leave. Maybe an 'undesirables only' section, yea that's it! They can even just re-use the disabled wheelchair pictographs to easily depict those we don't want to see or hear.

We shall overcome...

Let's Talk About Insurance, Shall We?

2008-07-08T13:00:00.001-04:00

Always a bad mistake to be tempted into reading AutismVox. Not because she doesn't have some of the most balanced, insightful and thought provoking things being written about autism in blogdom, of course she does; but simply BECAUSE they are insightful, balanced and yada yada, I then have to spend all my time thinking about that topic!

Well THIS ONE was no exception, because it's about one of my favorite rants: insurance coverage for autism services. We are roughly in the same position as Kristina/Charlie but a few years behind in that Liv is probably going to need services and assistance in some way for life, so the idea of 'medical necessity', when it comes to insurance coverage, comes into our vocabulary frequently. The idea of therapy, in the minds of an insurance company, is a repair/recovery-then-back-on-the-street sort of thing; physical therapy on a broken leg and get it back to working order in 6 months and they're done. But what if repair/recovery is not '90% mobility' definable? What if timetables of therapies are not measured in weeks and months, but months and years?

I really think we are at a crossroads of services for the disabled and who should pay for them. If you recall, the private sector predicted the end of civilization as we knew it when they were told what the Americans With Disabilities Act would really mean. "Making the country disabled-accessible would be cost prohibitive and would not float; the economy will sink, small business would cease to exist and the county's economy would wind up at the bottom of the fiscal ocean" according to those in business. Well, 15+ years later the dingy is still bobbing and we have an unprecedented awareness and diversity and access in the workforce and in public places. Well, OK, so it's not as rosy as all that, but going from nothing to a little is still unprecedented!

Not only has the private sector bore the burden of legislative disability access, but the public sector has as well, perhaps more, especially at the local school level. It has gotten to the point where not only are schools specializing their education for special needs kids, but they are providing therapies as well. No one in the late 70's would have expected their child to receive speech, physical or occupational therapy from a school system; today, it is commonplace and required. Again, rosy picture, thorny reality, but let's go with it.

So, here we all are at the crossroads of the next 'disability' intersection, that of neurological differences. Science is providing more detailed information about disorders and their potential therapies. Government is signing laws to have these disabilities provided for. Localities are trying desperately to provide these services. Parents are trying to fill in the gaps left in therapies that they see as still needed but not provided. And in the distance we see the devil incarnate in the form of the insurance industry quietly walking away from the intersection whistling and counting the souls he has stolen, looking over his shoulder to make sure no one's the wiser.

Don't get me wrong, I'm not one of those 'socialize medicine' types (well, actually, I am, but besides the point), but I just have this funny idea that insurance is there to protect me from devastating medical losses. Maybe I'm old fashioned, but I consider helping my child communicate and learn how to better use her body to be part of that protection; I'm sorry, but I don't buy that this is a cost that should be borne by society. From what I've heard, using the excuse that schools should be providing these types of services is illegal (citing from the law firm of Dewey, Cheatham and Howe which was recently bought out by the firm Burnham and Ruhn). But, behind closed doors, they are saying that this is society's burden, not theirs.

Now you know I'm no where near being a defender of insur-a, but maybe they DO have a point. We have insurance, schools, state and federal entities passing this very expensive hot potato around. If autistics are integrated into society through better therapies and services, who's the primary beneficiary? State and federal governments will benefit in the form of a more productive citizen. Families will also benefit because they will bear less of the support burden. So why should insurance get involved in this when they are not the beneficiaries? Let's leave the leg broken, let's not provide preventive checkups; let's not attempt to take people where they should or could be; let's leave all that up to the people and entities most impacted. Fact is that insurance bears a primary obligation to the insured and a secondary obligation to it's stockholders and not the other way around (at least in my socialistic mind). I know I'm straw-manning it a little here, but I just feel that insurance will do anything in their power for cost avoidance; if you don't believe that, your mom or your spouse probably deals with your insurer.

What do we do then? How do we weave this safety net with government and private sector thread to catch poor unfortunates like my family just trying to give my daughter the life she deserves? I haven't a clue, but if the past is any indication, this battle is over money so it's going to get bloody. The only question is whether it remains a guerrilla war, where insurance and governments silently cut and run and work the denial of services covertly; or whether we can drag this out into the light and have a proper fight.

I Finally Found My Calling

2008-06-30T22:30:00.001-04:00

It's been pretty much as I expected this past week and a half. I could get used to this: No driving; no lifting; much less housework; the ability to pull out the 'shoulder' card and get anyone in the house to do my bidding; Sleeping late at least four or five of these days ("I LOST COUNT!" he said in an almost half cackle). Yup, if it weren't for the pain; and being locked up in this house; and having a wife becoming unhinged because she has MORE work; and not being able to take myself anywhere; and these kids getting under my skin almost as much as I'm getting under theirs; and having work, both home-work and work-work, begin piling up...Yepyepyepyepyep, I coulda got used to this...

But it all kinda starts back up again tomorrow. I promised work that I'd start working from home full time tomorrow and go back to the office next week. The girls start their summer school tomorrow; shape of things to come, we have to get them BOTH out the door by 7:30 (any seismologists out there, please disregard the potential tremor at 7:25 AM EDT...that'll be Grace's tantrum). Linda's schedule looks more like a UPS route than a summer day: pick ups, drop offs, layovers. I get to play lazy dispatcher and watch the more perishable 'packages' so that they don't spoil in the car and drive her bonkers.

But, minus the shoulder recovery and this could be the ideal life. So if anyone wants to finance a six figure salary for me, I'll produce a regular post and raise a whole buncha kids...I could even have 'em wear T-Shirts to advertise your products. Give us a jingle and we can work out the details...

Deja Mew

2008-06-26T23:15:00.001-04:00

Oh boy, what a sucker I am. I have exactly zero influence in my house when it comes to matters of the heart. First, let me take you back almost exactly one year, to my catiasco of 2007. Fast forward to today and it's more than a coincidence. Same issue with our eldest cat, bladder stones; same operation at the same vet. Same friggin phone call from the same friggin wife with the same friggin problem. To coin a musical phrase, and they call it- kitty love. My end of the conversation was reticent: "No!", "Absolutely not!", "They will not scoop, water and feed them right!" Linda took it blow by blow and promised to have the kids sign a contract to be in control of the cat duties. Linda was demure but steadfast...she wanted this kitten.

I could have vetoed the deal, really I could have. I probably would have been given the cold shoulder for only six to nine months. Secured my position in the Cold Heartless Bastard Hall of Fame. Instead, I get a cover story in IQ: Idiots Quarterly. I didn't even get a choice of names, by the time she arrived at the house Linda already had the name Amber picked.

I guess on the plus side is it's a baby that does not have diapers. The cat is perfect (that was one of my stipulations for ANY four legged animal that comes through these doors), she's fiesty AND loveable. She was bottle fed from one day old and is completely comfortable with people. Livie's high pitched screech did freak her out a little, and the shear volume in the house is obviously a source of discomfort; all I can say is "GET USED TO IT KID". Grace has got her name down pat already, and while there is no interaction between them per se, there have been several mid-living room near collisions between them. I even have several real poor Amber jokes:

What do you call Amber if she sticks her claw in an electrical socket? Ember
What do you call Amber if she pisses daddy off too much? Amberger
What will Amber say if she gets locked out in the winter? Damn! Burr...

So much for my shoulder surgery recovery. I'm last week's news, the latest chaos is a fuzzy brown kitty named Amber.

One of My Favorites...Trying to make St Peter Laugh

2008-06-23T10:30:00.002-04:00

I can't let the passing of George Carlin on Sunday of an apparent heart attack go unmentioned. In case you haven't noticed, I try to be funny, but people like George made it look so damn easy! I remember sneaking into my sister's album collection in the mid 70's and pulling gems like FM/AM, Class Clown and Occupation: Foole out and listening to all those forbidden words. But he hooked me with all those references to my life; routines about getting a kid to laugh so hard in the lunchroom that he got Jimmy Smith to pass an entire tunafish sandwich through his nose: or the Spanish speaking Father Rivera and the confessional line that you saw moving and the way us 'catlick' boys confessed. Or Wonderful WINO radio and the broken clock or the weather forecast of "Tonight...dark, continued dark through the night, with widely scattered light in the morning". I must confess, I didn't get half the concepts he was talking about in those albums, being just 10 or 12 at the time, but I still laughed my ass off.

Funny thing was that those routines were ingrained in me, and I found them coming out years later, and as long as I would say "As George Carlin said" I could get away with using his stuff to make people laugh. As I got older, I found his brand of observational comedy irresistible. There's nothing funnier that looking at a bizarre or ordinary situation and finding that humorous twist to it; he was the undisputed king of it. He made people like Jerry Seinfeld look like they were observing the weather in comparison.

I just envision him arriving at the pearly gates and trying to talk his way into heaven, with St. Peter pointing out the various digs to organized religion he's done during his carreer. Let him through Pete, we can't let devil get all the laughs. He'll have you in stitches with a half hour on "what's with all the white up here"!

Thanks, George...

Outta Commission

2008-06-19T07:30:00.000-04:00

I'm going in for shoulder surgery this morning. I can't decide which direction to take the next few posts. I could go with:

The disability angle- realizing what it is like with some kind of disability.
The wife/disability angle- Linda all of a sudden having 6 kids and one less adult...
The I am in excruciating pain and need someone to b!tch at angle
The funny, my kids are going to forget my shoulder out of commission and cause me excruciating pain angle

We'll see which way it develops. I'll talk to you later...

Take it From Someone Who Knows...

2008-06-13T14:00:00.001-04:00

I'm going to go out on a limb here and expose myself and my internal conversations when it comes to dealing with society at large. It will hopefully not be like the foot in mouth that Garth from Wayne's World when he said "Did you ever find Bugs Bunny attractive when he put on a dress and played a girl bunny?" I may have all the neurotypical people backing away looking for the door (or they may just agree with me, who knows?). But, since I am on the Hub and I at least have a fighting chance of a few of the neurodiverse reading, I'm sure they will find the rantings on NT society's foibles at least mildly recognizable and entertaining...

My light bulb went off a little while ago when someone on the Autism Speaks board made mention of how they needed to figure out a way to 'extinguish a behavior' in the NT world: specifically, the behavior that finds clerks, cashiers, government servants... NT people in general, ignoring you like you don't even exist. It got me to thinking of all the types of NT behavior that we'd might need put people through ABA for a few years for. Hey, maybe ABA could be done in jails to try and 'correct' some of those more extreme non ST (socio-typical) behaviors. I started thinking about times that I'm on a line, especially those in a crowded stadium or some other place where a somewhat haphazard queue gets created, watching those feigning ignorance about where the line ends and who's on which line, then inserting themselves well in front of me. I thinking the whole time what I'm going to say, how to politely confront them; then when it finally happens, I chicken out and don't say anything.
You people on the spectrum think that navigating the public social NT world is easy for us 'colorless' people not on the autism spectrum? Ha! think again! There are a handful of types of public personas out there that have this...this, shall we say, NT spectrum disorder and it takes a keen sense just to identify them...there are:

the polite (people like me just mindin' our own business, a little geeky, self conscious, awkward, these are the closest to 'normal')
the righteous loud (those like me and you with a sense of right and wrong... but with no fear)
the weasel (those who rely on stealth to put one over on the crowd)
the ditz (those, either by conscious design or by actual mindset, who think that ignorance IS an excuse)
the bull (those who, again, either by conscious design or by actual mindset, actually believe that the world is their oyster and "you ain't freekin' tellin' me what I can or can't do!")

Upon closer examination, however, I find that these are just categories of types of NT's out there and that there are, interwoven in these groups, recognizable patterns of true disorders that may be treatable or at least categorizable and further research could be done. So, from the Faber College School of Sociology Research, here's a top 5 list of NT disorders that have been documented and no, this is NOT how all NT's are, we are just as appalled as you on the spectrum, but remember, it's a way of being for them:

Of course, the aforementioned line cutter. The righteous loud are the best antidotes to this behavior; if it's a big enough crowd, you can even pretend to be a RL and you can get a lynch mob started. Just make sure you say something within the 1st 5 seconds of the 'cut' or you might just get the "you ain't freekin' tellin me" speech...

The parking lot syndrome- There are so many sub categories in this, but most of these are a lot like the line cutters, only with 1000+ lb backing his or her desire to get the best. a)the shark, who circles the lot in search of the tender morsels of close parking spaces (even though there are 100 that they pass by that are only 10 feet farther away); b)the lurker, who will dive from the opposite direction if you are waiting for someone to pull out; c)the little red corvette, who park their precious piece of metal in such a way that takes up 16 parking spaces; d) the crayon over the line, who cannot park evenly between the line and it's closely related relative e) door smasher who park so close AND open their 1969 coupe De Ville door as if they are launching a land rocket, then feign not noticing that YOUR door is now wrapped around theirs. So many in need of a cure (oops sorry, recovery from), but i assure you that the above only makes up about 10% of the NT population...it's just that the 10% do a lot more driving and shopping!
The super market developmental disorder- You KNOW there are a few that need some intense therapy in here. Those who do the shopping cart in the middle of the aisle; those that park their cart and shop right across from it; those parents (with non autistic) bratty kids; oh the sale shelf clearers (I freely admit that's us!), the 3 cart family at the last register open (again... us). And of course, the classic, the 11-18 item person in the under 10 express lane (these people have such a strong lobby that they have actually CHANGED signs to accommodate them "Around 10 items or so".
Pervasive Driving Disorder- This category could possible be a book in NT disorders in it's own right. I will have to do some broad categories here, lest I turn a 5-10 minute read into a 2 hour one! So many symptoms, which ones are the worst. OK lets start with a juxtaposition: fast drivers in the slow lane and low drivers in the fast. The allegory of drifting: those who drift from lane to lane with no directional and those whose minds are drifting and forget to turn it OFF! Professions: the weavers who use all six lanes and the shoulder to get into the lead and the beauticians who are busy on their appearance, whether it hair, eyes, lipstick makeup. Oh, there are cell phone talkers and high beam flashers and kid yellers and sandwich eaters; enough dysfunction to fill a stadium.
Cell Phone Hyperactivity Disorder- last but not least in the disorders of the NT world, the obsessive need to be in constant contact with others and with the outside world even though they are in the outside world they need to get inside the outside world by getting on the internet and therefore in touch. NJ now has a ban on handheld cellphone usage in the car, I think cellphone usage has actually gone up, with just a slight decrease in those looking like Gary Owens with their right hand up to their ear. Yes folks, there truly IS no cure for this end of the spectrum, have a heart when they answer their phones at a classical concert, they are compelled to do so.

I hope this will give you a better understanding of some of the more specific disorders with the neurotypical world. If you have others just drop a line. If you would like to donate to the cause of eliminating NT from your world, I'm trying to buy the NTSpeaks.com website name, but some 14 year old is squatting on the rights... so until then, just donate to the elect McCain campaign.

COMMUNICATION BREAKDOWN

2008-06-10T12:41:00.002-04:00

Having a non-verbal autistic child holds some special challenges and seems to put us at the heart of some of these moralistic, therapeutic and causational issues. To give a quick recap, Livie regressed from 50 odd words down to zero over a period of a few months from around 14 months old to 20 months. For a more heartfelt description, see previous post .
Currently, we are dancing the line between using 3 types of communication: Trying to get her to vocalize, having her use sign language and using a PECS book. Each has its plusses and minuses, advocates and detractors, and there seems to be clear battle lines drawn between them. Many will argue that trying to force spoken word will devalue the child's other communication abilities; sign advocates seem to be staunchly against PECs (for you Jewish folks, it's kinda like kosher, you can't let the sign touch the PECs picture). PECs will say it transitions a child easier into other forms of electronic forms of communication. Speech people will talk up the mainstream opportunities speaking will afford.
To add to the mix is her diagnosis of apraxia. It's tough to get a hold of where or even if apraxia is part of the spectrum. What is it that 'causes' acquired verbal apraxia, which is how our speech therapist initially named it. Just the words connotate that her apraxia condition was caused by some injury.

Do I push to get words; do I force her to use sign, which she has trouble with because of motor planning or do you go with PECS and somewhat limit her ability to freely communicate? Is her 'non-verbal-ness' part of who she is? I don't think so, or at least her 'non-communicative-ness' isn't part of her. She is frustrated when she cannot convey herself to us.
Those of you with non-verbal children can probably empathize. You want to help them get it out and many times it's just not clear which way is best and right. How far do you push, WHAT do you push, how do you coordinate your wishes on to therapists and school systems who are often in another camp when it comes to 'what is best' for you child?
Just writing about it makes me tired, no clear answers, lots of opinions and you in the middle just trying to do what's best. Sorry, I'll think more funny stuff next time...

Changing Stuff on the Whiteboard

2008-06-06T22:30:00.002-04:00

Sometimes you think you have all these best-laid plans, you got it all figured out, then someone throws a wrinkle, a new idea, or some kind of roadblock into you plans. I'm not sure I've covered it here, but we've had Grace in a preschool disabled class this year, and the half day program just hasn't worked out. To the point where we called an IEP earlier this year and planned to have her transitioned to an autistic program this summer then into the fall. We had felt pretty good about the decision, she would have her transitioning issues worked on and she would be engaged throughout the entire day, rather than be pretty much left to her own devices for half of the half day.

Well, a somewhat perfunctory visit to her developmental pediatrician sent us a spinning. For us, we feel a developmental pediatrician is kinda like having a lawyer. You have them around to kinda scare school systems and insurance companies into doing what you want. "You think she doesn't need speech? Well, MY developmental pediatrician is BF Hutton, and BF Hutton says.." When BF Hutton talks...school systems listen!" Anyway, BF Hutton disagreed with our assessment of what Grace needed, she thought we needed to work more on her socialization and that our choice would leave her lacking in this area. But since we are 'Grace development' specialists, we take it with a grain of salt. And since we have a rather extensive network of professionals to bounce opinions off, we have decided to look at the program she is recommending, but only change if we are so floored by the experience, that we WANT to change over.

It gets me thinking of all those poor new parents though, who don't have the benefit of 4 years experience with another child; who are intimidated by either the school system, the medical professionals, or perhaps even a spouse or family member. It makes me cringe to think of all the bad decisions being made for our kids out there on the basis of prejudice, bias, incomplete experience or, worst of all, financial considerations.