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:

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...

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

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

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%

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

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

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.

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'?

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

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

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

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

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

(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

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?

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

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"

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

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

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?