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?

Wow, I'm Slipping!

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

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

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

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


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

Wright On!

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

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

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

Level 5 in the Game of Life

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

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

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

Total pairs matched - 209 (PAIRS not socks)

Total unmatched socks leftover- 127

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

Miscellaneous winter hats gloves and doll clothes- 17

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

Birth of a Blogger

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

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

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

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

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

Hey Ed...I Love You

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


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


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

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

Compounding the Problem

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

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

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

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

The Human Petrie Dish

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

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

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

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

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

Outfitting an Army (W update)

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

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

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

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

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

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

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

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

Update:

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

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

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

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