Saturday, April 02, 2011

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

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.

Saturday, March 26, 2011

Money...Meet Mouth

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:

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.

Sunday, January 16, 2011

Best Laid Plans...

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 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.

Monday, August 02, 2010

Stick Together...Help Someone Climb the Hill

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.

Sunday, June 06, 2010


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.

Tuesday, April 20, 2010

Hope You Have a Good Time With Your 3%

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...

Saturday, April 10, 2010

Mr Lavender Corn Tortilla Man

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 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