Adventures in Autistic Parenthood

Saturday, December 12, 2009

Please Rise:

Funerals are sad events, filled with solemn reminiscences and crying and the like. It says so right in the manual. Crowds of melancholy friends and family quietly sitting in church whispering to each other and trying to shush the kids. Well...... most of the kids. A couple of weeks ago Raine's Aunt Jay died, and the funeral was scheduled for the next Saturday. Unfortunately, I had to work that morning and had to meet Dude, Raine and her mother at the service. Unfortunate, because I missed a couple of classic Dude moments. Let's backtrack a bit and set the scene.
I got off work with just enough time to drive home (the opposite direction from the funeral), take a quick shower, get dressed and make it to the service. Needless to say, on the way home I ran out of gas. Texting Raine that I was going to be late, I walked the luckily short distance to the gas station and with that delay raced home to preform my ablutions and drive at a dangerous speed the 20 miles or so to the Church with Raine's mother's directions in my hand. Not knowing that those very same directions had already gotten Raine and her mother lost. Oddly enough, by following her directions I immediately found the exact wrong church, and Raine's daughter (also following Phillis' directions) was combing the wrong town. The females in her family are definitely not related to homing pigeons. While I was frantically searching large tracts of Southwestern Pennsylvania for another UP church and texting Raine for updated directions I was unaware of the drama taking place only blocks away.

The Church was quite nearly full of whispering people in dark clothing seated in the pews. In the third pew on what I consider the 'Groom's side' (I've been to a lot of weddings) seated, in order, were Dude, Raine and her mother Phillis. Luckily, David was being pretty good (for him), a little restless, but mostly quiet. Raine was trying to unobtrusively deal with frantic text messages from her boyfriend (me) and daughter in the middle of a church. During Raine's distraction the preacher walked in the direction of the podium to adjust the slide projector, and my son, despite his pagan upbringing, solemnly, with perfect inflection and in a clear voice said, "Please rise". .... And everyone stood up. The preacher suppressed a chuckle and finished his work with the projector before signalling the congregation to return to a more restful position. Only Raine and her mother had remained seated during the entire incident telling the congregation, louder than words, from whence the order had originated.

The service started just as Raine's daughter managed to find not only the proper town, but the church as well. Raine felt it would be inappropriate to text during the service and despite the fact that his father was still lost in the wilds of rural Pennsylvania, David was in complete agreement. I know this because during the service a cell phone on the other side of the aisle started ringing. The owner obviously didn't want to answer the thing but his (or her) plan of just ignoring the device wasn't sitting well with Dude's sense of the appropriate. After listening to it ring several times David, in an obviously disgusted voice said, loudly and clearly, "Turn off the phone please!". A quiet chuckle wafted around the room, but Raine was clearly tempted to make the funeral a double service with my son filling the second bill. But cooler reason prevailed and she used the incident to escort David out of the building and make one last attempt to corral his wayward father before carrying out his death sentence.

Fortunately for David I was parked in a convenience store parking lot for the latter part of the service and it turned out that I was only 3 blocks away from the church. After visiting with the family for a time I took Dave home in my car. I think it's safe to say that if I didn't save his life, I at least saved him from a long walk home.

Tuesday, November 3, 2009

The Donner Party?:

Strangely enough I persuaded Raine and Dude to accompany me on another trek through the wilderness. Well, at least that's the way they looked at it. I find it hard to imagine that walking on a nearly level, gravelled trail in the early evening could be a hardship. According to the two of them (or at least the way they were acting) Shackleton didn't have it so hard on his Antarctic expedition. I distinctly heard the words 'Donner Party' mentioned more than once and since I would make the largest meal, I immediately decided to turn around and head back to the car even though we'd probably covered all of half a mile. The sun was just above setting, the angle caused the seeded plants to glisten, the sky was blue, there were a lot of leaves on the ground, and a few still in the trees. Along the way I slowed to take a few pictures from a hundred foot high, quarter mile long bridge that is part of the trail. While we had been walking out Dave and Raine had paused with me as I took each picture, but when I looked up after taking the shot they were about a hundred and fifty feet ahead of me not even looking back. 'Like ponies headed for the barn' as Raine told me later. See those two blurry images through the trees? That's Raine and Dude and I'm on the trail eighty feet or so from the cut-back that leads another eighty feet down the hill to where they are. I almost get the feeling that they didn't want to come. Nah, must be my imagination. Actually they were pretty good about it considering neither one was feeling a hundred percent at the time. I'm not exactly an advocate of the whole physical fitness craze/trend. I don't understand people who jog around for no apparent reason at 6 am. I've seen them while driving to work, they just don't look like they're having any fun pounding pavement down with their feet. That's pretty much what Dave and Raine look like when I take them for a leisurely stroll in the country. The only time they look like they're enjoying themselves is when we start back for the car. They should just start enjoying it, it's not like I'm going to give up.
You can't get pictures like that sitting on the couch at home.

In the course of Dude's school notes there are sometimes surprises. Strange behaviors or unexpected problems. But normally he either just gets a smiley face or a frowny face. If the frown is for anything other than excessive talking (not Dave, noooo) I often get a brief descriptive note as to what the trouble was. (As I've stated before Dave acts as if the book doesn't exist when a frowny face is present) It's kind of unusual, however, for any note to accompany a smiley. Friday I received such a note.

Let me set this up. Fridays when Dude has had good notes all week he's often so exited that he'll shove the book right in front of my face to show me the day's note. I'm glad he's excited, it means that he understands the system and it's working. What he doesn't seem to understand is that Dad needs to have untrammelled vision while driving down the steep, winding street leading from the school. So that can get exciting The other time Dave would insist that his note is more important than vehicle safety is on Friday when he's had a bad note during the week and he wants to make certain that his weekend gaming privileges are secure. So last Friday I was ready with the book-block (a patented Ninja-Dad move) but he merely held open the book in his lap to show me the upside-down-frown. This was kind of curious so I took a quick glance at the page to see what was going on. There it was, the smiley face that should have been endangering our lives, sitting there, ever so peacefully on his lap. Taking a second quick glance ( I guess it was actually endangering our lives after all) I noticed that there was a small note accompanying the aforementioned smiley. This being kind of an event, and suspecting that David may have been forging smiles on frowny notes, I pulled to the curb to inspect the thing further. There under the unaltered face was a single line note and after reading it, I was glad I'd pulled over.

The note read, 'He is a real character' followed by another, smaller happy face. I'm hoping she knows that this bit of information is no real news to me, but is rather informing me that she is now becoming aware of the true peril she is facing. I'm serious, that kid is oozing charm out of his very pores. He has to, because I haven't seen it come out any other way.

Don't get me wrong, I love my son, but he's not exactly the easiest person in the world to deal with. He never stops talking, reciting games, TV shows, movies, or reading out loud just about anything that catches his eye while not reciting something else. He doesn't get out of anyone's way while he's walking or sitting and never goes around anything that he can't brush aside or walk directly over. This includes people, dogs, or small buildings. Let's face it, he's cute, but he's basically a radio with no off button installed on a bulldozer with legs.

Monday, October 12, 2009

School Daze:

We've been settling in to our Fall/School routine and I've noticed that not much interesting stuff actually happens here. We get up go to work/school/work and perform our various weekday tasks, I pick Dave up at the bus, we come home. Or run an errand then go home, which he hates because it interrupts his '5 minutes after I'm off the bus I'm playing games' schedule. Then I check the e-mail, get dinner started, Raine comes home, we eat (a necessary evil game interruption) we watch a movie or hockey (GO PENS!), then Dude goes to sleep (a much longer game interruption), we watch some more tv/hockey (GO PENS!.... didn't I say that already?) and then it's time for us to go to bed (and that's all I'm going to say about that) until it's time to start the whole thing over again the next day. Other than a few (?) minor variations, which seem to all come in the same week, that's our weekday routine. I mean there are times when the entire week goes by and we don't see our house until it's already time for bed (and boy are we glad to see those beds!). But by and large that's our day to day. (Weekends are completely different, and have zero set schedule)

Schedules are good for autistic kids. (That's not particularly why we have one, but it works out for Dave). Autistic kids need to have a routine and get upset when it's disturbed. Most of the 'behaviors' that make people nervous or just scare the hell out of them are a result of their own presence breaking into that routine. We've gotten Dude to the point where you almost have to know him to understand how upset he is. He'll hiss air through his teeth or just speak in a more agitated manner, but I still know how upset he's getting, and when to step in to calm him down before it gets too far. Dave does like his routine, but his idea of a routine is sometimes negotiable. But only on his terms. It's been almost 2 months now that he's been on his school schedule so it should be setting in, right? Well, kind of.

Two things make me think that Dude's idea of 'schedule' an mine aren't exactly compatible. One is, quite often in the evening when he goes to bed he looks at me and says, "No school tomorrow." or, "Jackie (his Summer nurse) will be here tomorrow.". Subtle hints, I know, but do you think he's trying to tell me something? The second indicator might be when I went to visit his school the other day. I could tell that his new teacher (Mrs Yarosz) was pleased to see me, but resigned to the disruption that my visit entailed. She was obviously glad to see me taking enough of an interest in my son to come visit the class, but we both knew that I had totally blown her plans for the rest of the afternoon as it was going to take her most of an hour to get her kids settled back into their groove. Some of the kids knew me, and it was some time before Mrs. Yarosz (ya-roce) and I could even talk because to the kids I was obviously there to see them. One of them even asked how Raine was doing even though he'd only met her once.(which surprised Raine when I told her) But we eventually had our impromptu parent/teacher conference and then Dude and I left the classroom about an hour before he normally would. When we'd cleared the doors to the school and were walking down the walk to the Bonnie Rhuad (still Dude's car) he peeked back toward the building, looked up in the air and said, "I'm free!". (Pause simulating the time it took to retrieve my jaw from the ground) I was quick to inform him that he wasn't technically free as he was still under Dad's control. He didn't seem to think that was much of a problem. So much for the parental intimidation factor. Needless to say he had his driver, (me) take him to the place where his video games dwell (Raine and I call it 'home') and then dismissed his driver to whatever it is 'that Dad man' does downstairs while the video games are playing. Something to do with cheese if he knows what's good for him.

On an interesting side note: You'll notice in the picture of Dude getting off his bus that he has his book in his left hand. You can take it from this that he has a 'good note' waiting for Dad, because if it weren't a good note he would be doing his 'What book do you mean Father?' imitation. One other note: All of the pictures on this Blog, other than the occasional Calvin and Hobbes cartoon, are taken by me. So download them, use them for desktops or whatever but I need my cut if y'all are selling them... lol.

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'.

Sunday, July 19, 2009

The Formerly Nameless Post:

You can click any pic in the blog to get the full sized shot

Every once in a while Dude's dad (me) is struck by this strange impulse to wander the area and search out new things. Unfortunately for Dude this doesn't often involve an intensive search of the local GameStop for virtual fulfilment. What this does often entail is a journey to a previously unexplored section of a wonderful bike/walking trail in the area called the Montour Trail. The Trail is a part of a nearly Nationwide effort to turn old abandoned railroad lines into trails for pudgy suburbanites to experience something of nature in a fairly controlled environment. It hooks up (when some small sections are completed) with the Alegheny Trail which then hooks up with the C&O Canal Towpath to connect Pittsburgh with Washington DC by over 300 miles of non-motorized path. (if you think I'm impressed, you're right) When you consider that railroads don't generally allow grades of more than 2% (2' of rise or fall in every 100') and the area is packed with what the locals call 'mountains' (it's just a bunch of big hills squashed together) you can see why the rail-trail thing could be popular. Not with David.

Dude prefers to get his exercise vicariously through the efforts of 3D heroes battling evil. (Dave's concept of evil is pretty fluid, he sometimes thinks it's funny for the heroes to mow down the civilians) But occasionally I can get him to go with me, and other than the fact that he actually has to walk instead of pushing a button on his controller, he always seems to have fun.... once he's sure we're going back to the car. But due to the wandering bug instilled in me by my wandering parents I often just drive the backroads aimlessly just to see what's around. Sometimes what's around is a WWII Sherman tank in front of a tiny VFW in the middle of some valley town. And like any photo-mad tourist I try to set up a shot only to have my girlfriend take a shot of my butt while I'm staging this completely candid photo-op. I eventually got the hell out of the way, retrieved my camera and took this shot. Completely unaware, until I'd downloaded the next day, that my posterior was preserved for... well posterity. I'm not worried, I'll just carry my camera around with me for a while, so Raine has to watch me closely to make sure I don't reciprocate. Her paranoia will be more fun than actually getting the retaliatory shot anyway.

Anyway, much to Dude's relief the day of gamlessness was over and we headed home, only to leave again nearly immediately for an evening of cards at Raine's uncle's house. Luckily for him Nik was running a Spongebob Squarepants marathon and Raine's mom and uncle are pretty old, so the evening ended pretty early anyway (lucky for me too, they're card-sharps and skinned me for 6 bucks lol) so to make up for my callousness I took him home, bought him some Wendy's burgers and afterwards sent him up to his virtual friends. As he was climbing the stairs, he turned and states/asks, " Jackie (the nurse who watches him during the week) will be here tomorrow." To which I replied, "No, Dad will be here tomorrow." And as he turned to continue walking up the stairs he gusts this huge, heartfelt, sigh and says, "Oh man, this is going to suck!" I guess Jackie doesn't take him on walks in the wilderness or perch him atop implements of destruction to take pictures of him. Go figure.
Dave doesn't actually hold much conversation. It's mostly a series of quotes from movies and games and things that he's been told repeatedly. It's often appropriate to the situation, but often has nothing specifically to do with what you're trying to talk about. ie: 'Oh man, this is going to suck' is something you hear when he's disappointed. And mostly it fits. But it very easily could have been 'This is what a chick feels like' or 'That's going to hurt come Winter' . All of which are quotes from an N64 game called Duke Nuke-em. And that's only one of about 40 games and hundreds of movies he might quote every day. If he were in a 'Spongebob' mood it would have probably been 'Barnacles!'. Learning Dude-speak is almost like learning a foreign language in English. Only there's no Rosetta Stone out there that can teach you the lexicon. I'm just always glad he never got into Barney or the Power Rangers, cause those are two languages I just don't care to learn....

Saturday, July 11, 2009

Special Olympian:

Pictures: This year's Standing Long Jump, winning Gold in the 50 m, and Bronze in the Softball Toss.

On the first Friday in May (normally) the Beaver County Special Olympics Outdoor Games are held. Dude and I have a ball every year. He's normally entered in the same three events. Standing Long Jump, the 50 Meter Run and the Softball Throw. The Games are run in a state of mostly-happy chaos, every year the same events have the same crowd of befuddled parents and 'buddies' (buddies are volunteer students that escort the athletes to their events) clumped together in uncomfortable, unknowing groups like cattle in a pen.
For those of you who've never been to an event, here's a rundown: Each athlete is assessed by the school as to their ability to understand, and physically participate in each event. When their physical skills have been set, they're given a designation, and this determines the 'heat' for that event. It's designed so that kids mostly compete against similarly physical children. It's pretty fair, and there's not much 'hedging', although I had some questions I wanted to ask Hopewell Junior High one year, but that's neither here nor there. So, generally you're going to see roughly the same kids every year and probably at every event through the day. And kids aren't the only thing you see annually.
Here's an example of 'what happens every year': The Standing Long Jump (above left) is always Dude's first event. It's in the same place every year, in the near left-end of the Beaver Area High School football field as seen from the stands. The same two guys have been 'kid wranglers' at the SLJ for the last three years and inevitably there's a group of about 50 parents, buddies and children milling around just inside the gate with the gruff voiced kid wrangler repeatedly calling out names for each heat. These names are mumbled around the group, sounding not unlike a herd of the aforementioned cattle and when he has enough names to fill one of the heats (it would take even more forever if he tried to do them in order) he passes that group of kids off to the students assisting the running of every event. Once those 5-9 kids have competed the results are tallied up and taken to the Awards Table for that event. A middle-aged woman reads the slip of paper, calls out the names, sends someone to gather the 3 kids who have wandered off, then another woman hands out the three medals and the remaining kids each get a ribbon. All the while that this is going on, the two 'kid wranglers' are trying to get more heats filled, the crowd is still milling about inside the gate trying to determine if they've missed their heat or even if they're in the right place, the students are still trying to get kids with limited understanding to perform the event somewhere close to correctly, and that guy you hear every year, but can't quite remember what he looks like is saying something you can't quite understand over the PA. And that's one of the better organized events. I don't even want to go into the crazed parental grumblings surrounding the annual mishandling of the 50 meter run, or the inevitable half hour wait for the Soft Ball Toss (it's right after lunch) or the SBT lady's unique idea about organization that throws chaos to the wind. (I'm not sure she knows how close she is to dire bodily injury every year)

If this were just for the adults there'd be a riot every year and I haven't missed a year that we've been in town. It's impossible for me to come home after a Special Olympics event without my face actually hurting from smiling so much. It's fantastic, and the reason is these kids. They just don't care! They're loving the whole event with all of their being. It's not just the athletics the kids love. They tromp the grounds hauling their 'buddies' around searching for people they know. Showing off their medals and ribbons and talking a hundred miles an hour with big grins on their faces. It's probably the only time outside of school where the 'specials' outnumber the 'typicals' and they seem to know they're running the show. I'm gathering quite a following of kids that look for me every year, but every adult in the place seems to know David. We can't walk 50 feet without someone stopping us to talk to Dude. Of course he acts like a Rock-Star trying to get through the fans to his dressing room, but the adults love him. They all ask me if they can take him home with them. I keep saying 'Yes' but I still end up taking him home every year.

The first time I took David to a Special Olympics he didn't want to have the first thing to do with it. He griped the whole time, all he wanted to do was get some Wendy's and go home. He didn't want to walk around, he didn't want to wait with the crowd, he didn't want to throw the softball. Then the ladies gave him that bronze medal. That was it, he was hooked. From then on the events couldn't come fast enough, he was continuously 'Are you ready to run?' (50 meter was 45 minutes after the SBT). I kept trying to tell him that we had to wait, but he was having none of it. It was a chilly, drizzly day and Dude, the kid whose life you have to threaten to get him away from his video game, wouldn't have gone home if I'd have laid down a trail of Junior Bacon-Cheeseburgers. (his favorite) The two Bronze medals he won that year are still attached to my Boonie hat that I wear quite often. I'm very proud of those medals, even though people sometimes mistake them for fishing lures. To David, the Olympics aren't so much a social event as a chance to add to his Medal Shelf. As a matter of fact, at the next years 50 meter he ran the race, ducked through the crowd before I could catch him, snatched the gold medal from the young girl in a wheelchair that was helping to hand them out, and walked off like he owned it. He came in 4th that year, and was pissed that he had to give it back. Every year he's excited about going and I've got to tell you, he's not the only one. I wouldn't miss it, him or the rest of the kids for the world.

Sunday, July 5, 2009

He's Back!!

Out of the clear blue 4 weeks ago Dude's mom decided that she'd take him for his visitation this year. After many strange things (Deleted for content, swearing, and relevance) I made the journey of a thousand steps (ok, 1950 miles round trip) back to the land of my birth to retrieve my claim to Dudeness. Raising an autistic child is stressful in ways that even we parents don't understand. So a break can be a good thing sometimes. Let's get one thing straight. 4 hours without David can be a relief. 4 days without him could be considered a vacation. 4 weeks was more than kind of strange. I kept looking around like I'd forgotten something. There were no video game noises coming from upstairs in the middle of our movie, no incessant talking from the backseat when we were driving, no scanning the crowds in Wal-Mart to prevent collisions and misunderstandings. All of the little (and not so little) aggravations that come with being a Dude-dad were gone and I missed each and every one of them so much that I started Blogging about them of all things. As Dude would say "Sad!" Of course I can't hope to duplicate the forlorn expression on his face when he does it. Dave has two major expressions of life... 'Fine' or 'Sad' everything falls within these two words. Everything from OK to SUPERFANTASTIC-IALMOSTCAN'TSTANDIT~! is covered by 'fine' and every other thing from 'Not-so-good' to 'Oh my God! The dog is dead and my arm just fell off' is covered by 'Sad'. Getting back to being Dude Central is definitely 'Fine'.

Ok, I'll admit to a bit of pettiness. When we picked David up in Kansas City he immediately tried to push past his mom to get to me. When she stopped him and tried to get a hug and he put his hand on her neck and tried to push her out of his way again. Contrast to when she picked him up and he kind of luke-warmly greeted her and reluctantly left me. I know the reason was that I am his access to his Game Cube, X Box, Gameboy, Mac and Cheese and Wendy's, but still, she doesn't realize this, and it pissed her off. Which made me smile. Partially because of a certain amount of vindictiveness, and partially because it made her so mad she didn't speak for the rest of the exchange. (ah the many blessings of Dude-ness). When you're the parent of an autistic child (at least high-function) one of the best ways to parenting glory is to understand what motivates your child. I can imagine this much more difficult in lower-function autistics, but reward/withdrawal motivation works just as well as with 'typical' children. More so, probably, because their motivations barely or hardly change. Dude's greatest motivational reward is going to GameStop and getting another game.... So, when he gets good notes from school all week we all pile in the Blazer and run over to the GS (do not pass go, do not collect $200) and he picks out a game. And when he hasn't been good, we talk all weekend about how we're not going to GS and getting a game, and why. Believe me, it's worth the $5-$10 for a used game to get him to behave when I'm not around. Just ask his teachers! lol That's Jill on the left, and Ashley on the right. They do a wonderful job with Dude at school, and posting this picture is subtle revenge for all the times Dave came home on Tuesday and started talking about GameStop because Jill had written GameStop in her note. lol I don't know if Ashley's new addition has arrived, or if she'll be back by the beginning of the year, but I hope so. Teachers that you can get along with and can trust AND who do a wonderful job are worth more than gold. These are two of the best.

Monday, June 29, 2009

The Dude, a Beginning:

Let's get one thing straight right off the bat. This, is the Dude. The one and only, accept no imitations, DRH Dude. He's 15, he's autistic, and he's my son. And yes, he's even cuter than this picture makes him. If he weren't neither of us would have lasted as long as we have. I'm a single (but lovingly assisted) parent of a 'special needs' child, and that requires some adjustment for a basically lazy self-centered individual, that is myself.

Something I've taken as 'just the way it should be/is' may not be so cut and dried. You see, the people that help me with Dude (teachers, care-givers, nurses, doctors, social services) all tell me two things: 1) Dude is just a super-cool kid and if something dire were to happen to me, or even if I just turned my back for an appropriate time, they'd snatch him right up and take him home. (which is nice to say, but in my opinion just a compliment). And 2) That I'm a wonderful parent. I have no issue with the first, but I think some things should be said about the second.
I wouldn't classify myself as what parents of 'typical' children would call a good parent. As a matter of fact, I suck at it. Just ask my older kids. Once kids reach their teens the frustration of dealing with their insistence that my experience has no relevance drives me up the wall. Yes, I insist on the one thing they'd die rather than admit. Add to that the fact that I'm flexible until I'm stubborn, laid back until I'm impatient, and permissive unless I insist on something, and you'll see that I drive them just as crazy as they drive me. It took me a while to figure out that I was acting... well, a fool, basically. I want teenagers to skip over the teen-age stuff and get right to the point where they are relevant in an adult setting. So, with 'typical' children, I'm the kind of parent that requires tolerant adult female supervision in generous amounts.

But with David (Dude), it's completely different. I'm patient, but firm, and waaay more tolerant than I would be with any other child. And the reason is; I don't expect him to be anything but Dude. 'Typical' children have some innate need to appeal to someone. They bend their behavior to suit someone they want to impress or emulate. Be it Parents, friends, relatives, or some movie hero/heroine they're trying to be more like. While he's been raising me to be this 'good parent' Dave's taught me something even his mother never had the chance (or possibly the willingness) to learn. He's always going to be 100% Dude. He's never going to do anything just to please anyone. He's never going to change himself to suit anyone else. Once you can accept that (and it's tougher than it sounds) you really have a chance to know someone who truly is what people always say they want to be: Someone who's absolutely himself. Btw, I'm not ragging on his mom, it really doesn't bother me that she doesn't do very well with Dude. I just wish she'd admit it, and deal. Oh well, more to come at random intervals, and with no set plan we stumble on into the future.
For those of you who stumbled on this from The Flower Shop.... Sorry, nothing about hockey here. And for those who knew they were coming, you'll probably have to wade through my babblings to get the pictures you really want. For everyone else .... welcome to the Dude-verse, this is just your first instalment... lol