Monday, August 02, 2010

Stick Together...Help Someone Climb the Hill

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

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

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

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

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

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

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

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

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

Sunday, June 06, 2010


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

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

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

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

Tuesday, April 20, 2010

Hope You Have a Good Time With Your 3%

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

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

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

Saturday, April 10, 2010

Mr Lavender Corn Tortilla Man

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

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

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

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

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

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

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

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

Monday, March 08, 2010

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!

Saturday, March 06, 2010

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....

Sunday, February 28, 2010

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.

Sunday, February 14, 2010

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'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 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.

Tuesday, January 19, 2010

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.

Thursday, January 14, 2010

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...

Monday, January 11, 2010

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 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...