Adventures in Autistic Parenthood

Saturday, August 29, 2009

New Rides and Old Problems:

Dude sometimes has a difficult time with letting go of old things. Doesn't matter what it is, he just won't let it go. Games, game systems, favorite foods. You name it, if Dave likes it he keeps it. Cars are no exception. We had two; The Blazer and the venerable Mothership- a 92 Caprice Classic that has given good service for many years.

Most of you don't know that the Blazer is no more. A vicious Pittsburgh pothole ate it up recently. Seriously, a wheel dropped into a hole on the shoulder and flipped it over totalling it. The important thing is that Raine is ok. (a cut on her arm and much whining later and she's back to normal) Less important, but still nice is the fact that we had full coverage on the Suburban Assault Vehicle and only two payments left. Using the opportunity we decided to retire the Mothership and get a newer-used car for back and forth to work and let the bank buy us a newer car for our primary transportation. Which brought up a quandary. The 6 cylinder, '99 Blazer was on the CARS list, while the '92, 8 cylinder Caprice was not. (Your Tax Dollars put to work by some of the Finest Minds in the country) The problem, as far as Dude was concerned, is that he kept waiting for the SAV to come home. Every time we saw a green Blazer in a parking lot (about every other minute it seemed) he was clamoring to 'get in the truck'. Well, a vehicle search takes some time and it was two weeks before we found a used vehicle. Which meant for Dave, two weeks of driving around to Car Lots instead of Game Stores. Any shopping that doesn't have the words 'game' or 'cheese' or 'burger' in it just isn't Dude's cup of tea. That's a polite way to say that he'd rather have his head lit on fire and have it put out with a sledgehammer. So driving around in the Mothership to far flung lots in the sun to look at cars that weren't his wasn't his idea of a fun experience. So if we heard, 'So this is what a Chick feels like' and 'Got to go to the Wendy's store' rather more often than usual from the back seat we mostly understood.

Enter Bonnie-Ruadh (Gaelic for Good-Red) a flawless dark maroon 97 Bonneville with all the trimmings. I'm not sure how he understood when the Bonnie actually became 'ours' (his) but once the exit from the Notary's office occurred he was ready for his first ride. And once the dashboard lit up red instead of green he was fascinated. He somehow managed to make his seat belt stretch enough so that his head was between the front seats. Telling him to 'sit back' (approximately 43 times in the first half hour) didn't have any effect at all. He was talking a mile a minute and trying to see everything at once AND stick his hand out the sun roof. He also seemed a bit upset with Raine for sitting in 'his seat'. She looked back during one lull in the stream of conversation to find Dude staring back at her with a sour, pursed-lip expression on his face. Although he hammed it up when she pointed the camera in his direction it was obvious there was going to be.... trouble. The next day we picked up Raine at work and as she was walking out of her workplace Dave (seated in the front passenger seat) locked the door as she crossed the parking lot, scooched over toward the center console and gave her his best 'I'm not moving chick' stubborn look. Dude's a wily combatant but I thought he was fighting out of his class this time. Needless to say, Dude lost that argument and had to return to the backseat and grumble all the way home. We've also purchased a G6 for our primary car. Dave seems to think it's 'nice, but it obviously doesn't hold a patch to 'his' Bonnie. Although he seems to have appointed himself moon-roof cover attendant for both vehicles. Whenever we're out in either car he makes sure the solid inside cover for the moon roof is properly closed and secured when we return home. Anyone else reaching for it hears 'I'll get that' from whatever corner of the car Dude currently occupies.

Dave started school last week and we were both in for a shock. NEW TEACHERS!! No matter how often we correspond or how many times I call or visit it generally takes me until Easter to keep the names straight, even though the teachers at New Horizons send out a little Home Room form letter home on the first day with all the info I'll ever need on it. (some parents just can't be taught)

I'd like to take this opportunity to wish Ms. Yarosz (teacher) and Mrs. Cusano (temp aid) and Mrs. Detwiler (when she returns) the best of luck with David and his somewhat absentminded father. I've already got a note asking me to call and orient her with Dude's likes and dislikes and whatever other information the pentathol will force me to disclose. It gets a little tiring doing this every year four or five times a year. Every time David gets a new anything person I have to go and give them the Dude-lecture. Don't get me wrong, I love talking about him to people that not only actually listen, but also use this information to help David in whatever facet of his life that they effect. But sometimes I just want to get a DVD made like those self-help lecture guys and make them pay me a couple of bucks for the vid every time I need to answer the same questions to a new audience.

Oh, and for those of you who follow Dude's Game Extortion Efforts, he's already brought a weeks worth of 'good notes' home and we've already made the Grand Pilgrimage to the GameStop. He was so excited he almost forgot to talk (almost) except to say 'Go to the GameStop on Sunday!". And as we were walking down the sidewalk he informed Raine, "If you need me, you can call me at the Game Store!". I was laughing so hard I had to go back inside and sit down for a few moments, earning me a 'C'mon Dad! GameStop on Sunday!'. I figured I'd better get going before he decided to take matters (and the steering wheel) into his own hands.

Friday, August 14, 2009

Are You Sure This is What I Signed Up For?:

Last Saturday Raine and I were kind of haphazardly doing our weekend housework when, during a break right at noon, David walked down the stairs until he could peek under the ceiling, took a quick look at us lounging on the couch, gusted a huge sigh, and without a word turned around and clomped back up the stairs, shut the bedroom door and resumed his game. We looked at each other and cracked up laughing because even without words we both knew exactly what Dude was saying. "It's lunchtime, and instead of making my Mac&Cheese these two are laying around the front room like out of work actors."

I always wondered early on what it was going to be like as Dude grew up, and in my naive mental ramblings I always imagined that I'd be the one in charge. Foolish boy that I was. Autism was, and is, so little understood that no one really knows what it is. There isn't a psychiatrist, psychologist, doctor or mental health specialist in the land that doesn't have a theory, or someone with just as many letters after their name calling them 7 kinds of idiot (in finest medical prose, of course) When Dave was diagnosed the two most common causal theories were either A) a genetic defect causing a physical abnormality , or B) Lack of Vitamin A during pregnancy leading to a chemical imbalance in the brain. The longest lasting (although not most popular) idea is that Autistic children are actually so much smarter than the rest of us that they are unable to communicate on our level. After 15 years I'm ready to give that third one a good listening to. In the beginning I thought that given my son's 'disadvantaged mental state' (yeah, right) that I would but speak firmly enough, think far enough ahead, and watch carefully enough and control would be mine. I actually had some pity for 'typical parents' who would have to go through all the vagaries of child rearing. The uncertainties of children growing to adulthood and dealing with the frustrations of growing independence. They can have it, I thought, I'll always have the upper hand with David, and he'll always be with me. Well, I was half right anyway. Ok. I'll admit, I didn't foresee the note about Dave pinching women's butts when he was 12, but I thought I had most everything else pretty much covered.

Dude and I have a deal (as I've mentioned before) he brings home good notes from school for an entire week and we go to the GameStop and pick him out a game. It's a good system and, for the most part, it works pretty well. At least I thought so until this last week when Dave took me to school in the art of the loophole. It seems I overlooked the fact that there was no provision for the Summer in our deal. I had assumed that meant that there would be no GameStoppage for that time except for random visits as the mood took me. Dave had an entirely different outlook on the matter. Since I had placed no restrictions on the Summer he decided this gave him the opportunity to construct his own version of our deal. According to his variation as long as he didn't get into any trouble the 5 days of the week that the nurse was watching him (she doesn't write notes, we talk when I get home) that meant that we would naturally go to his Virtual Nirvana and a whole new batch of heroes for him to control. So when I came home from work last Friday he greeted me with, "I got the good notes, so GameStop on Saturday!, He's (I've) been a good boy." I had to admit, in all honesty, that he had indeed been a good boy but was not yet willing to give in, when he played his Ace Card. He'd somehow enlisted Jackie (the nurse that watches him) in his scheme! She said something to the tune of, "Oh he's really been looking forward to going to the game store!" and something like, "Isn't it so great that you take him to get games!"

Let's review: My non-conversational, 'mentally challenged' son not only worked out a new structure for obtaining games, but enlisted an accomplice in order to back his father into a corner. Naturally I wasn't going to stand for such blatant blackmail. After all, I'm the parent. I make the rules. I supply the structure. I have the control!!
He loves his new Wolverine's Revenge game. As a matter of fact he's already beaten it, so I'm waiting to see what his next game obtaining scheme will be. Yeah, parent.... structure.... control.... Riiiiiiight.

Saturday, August 1, 2009


Kennywood is a local amusement/theme park (has nothing to do with Kenny Rogers) in South Pittsburgh that has been open in one form or another for 111 years. (this is not a history lesson, just bear with me) The company I work for had its yearly Summer Picnic there and Dude, Raine, and I, lured by the promise of free tickets, free drinks and a meal (also free) roused ourselves at the crack of noon and made the 2 hour, 32 mile journey. Yep, you heard me right 2+ hours to get just over 30 miles. Unlike the four or five other theme parks I've visited, Kennywood is nearly impossible to get to from almost any angle. Here's a park that's the Pittsburgh equivalent of Worlds of Fun or Busch Gardens and there is NO 4 lane access that comes closer than 12 miles away. That's 12 miles of narrow city streets, vertical hills, and the only bridge across the Monongahela (mon-on-guh-hay-la) River for 10 miles in either direction that's been under continuous construction since the last time we went to the park 6 years ago. (the same two lanes, it's amazing really, even for Pittsburgh) Dude was very patient through the whole thing, although there were some grumblings from the backseat of the Suburban Assault Vehicle (Blazer) to the tune of 'We gotta get to the Park' or 'Ya wanna ride the coasters?' and every time any one of the 200 traffic lights turned green he was right there behind me 'Go it's green!'. With our DPS (Dude Positioning System) in full working order we finally made it to the Park.

One of the first attractions of KW is when you park in the free lot at the top of the hill there's a ski-lift style ride to the Entrance. Never knowing how Dude will react to new things we approached the lift with some trepidation. I needn't have worried, Dave was all about it from the start. All I heard from him on the way down the hill were things like 'Prepare to go down!' and 'This is a long way up here'. But when I asked him if he liked it he immediately said 'This is So Cool!' so we soon reached the bottom and began our adventure.

As we walked into the Park, Dave walked up to the turnstiles like returning royalty and greeted the ticket ladies with a hearty 'Hey babes, how's it going?'. I almost tripped over my jaw and then started laughing so hard I was getting looks from Rain who hadn't heard what he'd said. There was a brief episode about Raine's shirt with one of the metal detector Nazi-cheerleaders, but it didn't prevent us from entering the park. Briefly, the Steelers (6 time Superbowl champs) and the Penguins (3 time Stanley Cup winners) both won world championships this year and she was wearing a shirt that said 'On Ice or Grass, We'll Kick Your Ass' with logos for both teams. (check the Logjammer pic) The upshot is, we ignored this Tipper Gore mini-me, entered the park, and throughout the day received compliments on the shirt and inquiries on where they could get their own. Including some from other KW employees. Enough of that, on with the show.

One of the many reasons that Kennywood is one of only two theme parks on the National Registry of Historic Places is the fact that it has Three unique wooden roller coasters. The Thunderbolt, the Racer, and the Jackrabbit. (once again, not a history lesson) Dave has always been fascinated with things that move, and has always stopped in his tracks any time there's a show on Coasters or I crank up the toy roller coaster that I got him for Christmas many moons ago. So on our first trip to KW 6 years ago, we immediately went to Raine's favorite coaster the Jackrabbit. One of the cool things about the coasters at KW is the fact that most of them make use of the ravines and valleys to add height to what would otherwise be a mostly average coaster. The Jackrabbit in particular uses a very narrow valley to add a bit of depth to its 'camel hump' or 'double dip' drop on the return where the track levels out briefly and then drops again making you think you're about to be flung out of the car. And therein lay the problem. Everything was more than 'fine' with the whole experience right up until that point. From that moment on he wanted nothing to do with the whole Coaster experience. He couldn't be drug within yards of the start of a line leading up to a roller coaster. Didn't want to talk about roller coasters and couldn't have cared less if John A. Miller had ever been born. (premier wooden coaster designer and patent holder in the early 1900's)

Luckily for us we tried something next that he absolutely loved, and that was the flume-ride called the Logjammer. This was Dave's kind of deal. It had no rails, you got wet at the end, and it had no vomit-inducing bumps that threatened to send you into orbit. We almost couldn't get him off of it. So, armed with this information, and not being able to find the Picnic Pavilion where my company had set up (they moved it) we immediately crossed the park to the Logjammer. After two hours in hot traffic we were in dire need of three things 1) BATHROOM! 2) A quick cool off, and 3)Free food and beverages . So after hitting the restrooms closest to the gate we went for the Logjammer for the cool off, and while we were waiting (impatiently) in line we looked over and found the Pavilion where American Bridge (my employer) was holding our picnic.

It was so cool to be behind Dude on that ride. I had a shock to my brain about halfway through the first hill when I suddenly realized I was in the one place in the area that I didn't have to curb Dude's enthusiasm. He was excited and bouncing around and I didn't have to do a thing except join in. Which I enthusiastically did. By the first drop we were both yelling and waving our arms in the air. Luckily for Raine she was in the back of the 'boat' and wasn't in any actual physical danger from our waving limbs. We were able to step directly (after dragging Dave out of the boat) from the ride exit to the picnic which we all found to be terribly convenient.

Afterwards, refueled with cheeseburgers and side-dishes we leapt back into the fray. We dithered a bit over our next choice of ride knowing Dude was probably still afraid of coasters even after all this time. So what did I do? You got it, I picked the tallest, hairiest, scariest and only steel roller coaster in the park... The Phantom's Revenge. Every time we passed the Phantom, Dave was mesmerized. He tripped over Raine three different times looking up at it whenever he heard the ratchet sound of the chain-dog (a John A. Miller invention) as the cars were pulled up the hill. I asked him several times, "You want to ride that one, Dude?" to which he instantly replied, "No." Despite this I figured that once I got him on a coaster that actually held him down to the seat he'd be fine. Or at least unable to bail out and run away. The amazing thing was that Raine decided to go with us on the only ride in the park that she actually disliked. Once we were going up that first hill both my reluctant riders decided this might be all right. After dropping 160 feet whipping around, up another hill then dropping 228 feet, passing through the Thunderbolt twice and about half a dozen 'double bunny hop' hills and returning breathlessly to the beginning one had changed her mind. While she decided that 'it wasn't so bad' there were still things she didn't like about it and it would probably be another 8 years before she tried it again.

Now there's a peculiar thing about one of the medications that David takes. Prolonged exposure to the sun and heat really wipe him out. So even though we hadn't been at the park all that long (5 hours) the two hours in the truck on the way down and the park time was starting to take its toll. (Raine's problem with the outdoors is entirely different. The sun is her enemy and the house is her cave and place of safety) So after a repeat spritzing at the Logjammer and some more free sodas we decided it was time for Raine and Dude's favorite part of the trip. For Dude it was the Tram-ride back to the truck (I mean, fun is fun but the games are at home) and for Raine it was the stop to buy fudge at the strategically placed candy store on your way out of the gate. (1/2 pound of chocolate and 1/4 lb each of vanilla and chocolate/peanut butter)

All in all it was a successful trip. Despite the difficulties getting there and back out again, and the brief time of our stay, any time we can do something on the 'normal' side with David we can't help but feel satisfied. Now it's time for me to drag out my soapbox and do a tiny bit of 'preaching' (if you fall asleep during the sermon please don't snore too loud, you might wake someone else up) The amazing thing about raising a 'special needs' or 'atypical' child is the often innocuous nature of the things that bring you satisfaction. I mean, we were happy that Dave had fun at the Park, but the most satisfying part had to be the fact that he had a day were he could bounce around and be loud and babbling when he was exited and not be 'different'. Everybody was bouncing around and babbling and excited. A kid in line the second time through the Logjammer engaged Dude in an intermittent but extended conversation and his mother didn't even flinch. People with the kindest intentions still don't often know how to deal with kids like Dave and it shows as reluctance to interact. But for that time, in that place Dude was just another excited kid, in a place for excited kids. I know David couldn't care less, but it's something that everybody that loves Dude or any kid like him aches for to some degree or another. Today David was just another kid having fun at the Amusement Park and that was 'fine'.