Adventures in Autistic Parenthood

Monday, February 28, 2011

Who is this Kid, and What Have You Done With Dude?:

Computer Time!!

We had an IEP (Individualized Education Program) meeting at Dude's school. The stated reason for the parent (insert: Guy who doesn't know anything) attending these meetings is so that they feel less in the dark and more in control of the process and the progress their child is making in the system. I'm not sure how they think a 1 hour meeting, once a year, is going to make up for the 4-6 years of college I'd need to understand most of what's going on. Look, I'm a parent. I do 'parent things'. What I'm looking for is a kind of Special Needs Parent-Teacher conference. I don't have the knowledge to guide my son's education. You want to know how to get him to stay with you in a parking lot? I got that one.  You want to know what kind of  Vocational Program he's suited for? No clue. But I still go... whenever I don't completely forget when the meeting is supposed to be. They always want to set these dates 2 months or so in advance, and that gives me way more time than I need to entirely blow it off.  I hear they've got these new things called 'calendar's, and one of these days I'm gonna have to learn how to work one of those things.
  This year my fear of having missed the IEP came 2 weeks earlier than usual. Meaning my panic call actually occurred 1 week before the meeting instead of 1 week after. Armed with the correct date and time I was actually ready to go on the right day... Then I woke up to 10 inches of snow from a freakish late blizzard and school was cancelled. Fearing that the Fates wouldn't allow my attendance at this important educational event I waited for the Scheduling God (Carol) to hit me with another date and time, hoping she would be kind and not put it beyond my calendar-deficient attention span. Luckily for Dude's continued education she set a date only 5 days further along and at the same time (she's learning), so I actually made it there on time.

Movie Exitement

   Naturally, with the rescheduling some of the participants were late, and others couldn't make it there at all, but the meeting itself was actually very good. Since Dave is 16 now, he's not only allowed, but encouraged to go to the IEP and participate as much as he can. Once he got past thinking that I was there to free him from his educational prison and buy him video games, he was actually quiet and at least listened to everything we were saying. Until Ms. Walkney's PDA went off. Then he said (fairly loudly) 'You have a new text message!' Which got a chuckle, and gave me a chance to tell the funeral story. His teacher, Mrs. Yarosz, went over everything they were trying to do, and also the why and how of what was going on. She also told me how wonderful Dude is about doing unsupervised chores and how he can be quiet and task-oriented. I couldn't even call the lady a liar, because there Dave was, sitting at the table, being quiet, and before the meeting was over he was just allowed to walk out all on his own to go back to class.(what sort of mind-control lab is this place, anyway?) His new Speech Therapist, Tammy, informed me that his last ST 'just couldn't stay away from David' and was basically Speech-Stalking him. (I also learned that Maureen reads the blog and I couldn't resist giving her some trouble) When I had something to say, I had the eyes of everyone in the room (except Dave's). And the new School Supervisor, Regan, (not sure what title this replaced) asked pertinant questions of everybody and tried to learn all she could about Dude in the time we had.
     This year I only had one semi-burning question. Earlier in the year the wheels had started rolling to get David into a Vocational Training program (I know that's not what they call it anymore but I can't remember the PC version). Those wheels came to a screeching, grinding halt when they came against the speed-bump that is me. PA treats VT like a regular job. And the law says that if you're under 18 and you want a job, you have to have a work permit. To get a work permit your parent (speed bump) has to fill out the form. To fill out the form the parent needs the child's (hopefully) birth certificate. So after taking off work, and walking entirely around the High School twice because I couldn't figure out how to get in, that's when I was informed, by the no-nonsense Work Permit Woman, that I could not procede without proof that my son was actually born. Evidently they thought he was some sort of lab-experiment that I cooked up on the weekend.
   I have the filing system called- 'Oh! That's where that is!' and after an entire afternoon of tearing apart my desk, computer room, filing cabinet and dresser the only thing I could find was the reciept from the last time I'd needed his BC and had to order it from Florida six years before. So that's what I did again. Now what I wanted to know was 'Is this program going to do him any good? Or did I waste an entire afternoon and 14 bucks to get something I'm not really going to need immediately?' Answer: Unknown to me the VT people had been do Dude's class and decided that it was a bit early for him to enter their program. But at least my filing cabinet got cleaned out an re-organized. And the state of Florida got more of my money. They've been missing that since I moved away.
Speech Therapy lessons
   After the meeting I visited his room and was immediately greeted by a loud, and familiar voice saying, "Oh no! Now we have to start all over!' So evidently my son is wonderful at school, unless I'm around. (my mother always said I was a disruptive influence) I talked briefly to the kids that I know and the teachers that I didn't until it was time for Dude to go to Speech Therapy. Dave is very enthusiastic about going to ST, in fact he reminds everyone when it's time to go. Partly because Tammy is another of his fans, but mostly because he gets to use the computer for most of his lessons. I was gathering my stuff from the office when I decided I'd like to check out the class (since I have none of my own). Regan offered to escort me, but about halfway there we met Dave, who grabbed my arm, hunched over and acted like he was dragging me to the room. Tammy then led me on a whirlwind tour of her 20 foot square office/room, Dave decided that school work on computers is much more interesting that that 'Dad-person' and promptly ignored the both of us for the rest of the time I was there.

  I wasn't quite prepared to find out how 'wonderful' Dude is at school, but not only was everyone telling me how wonderful they thought he was they were telling me how wonderful other people thought he was too. C'mon! I know this kid. Sure he's cute and charming, but he's also a stubborn, loud pain in the butt! But there he was, quiet and nearly well-mannered and not acting like a scrambled recording of 16 different video games. The whole time I'm thinking, 'Nice kid, but what have you done with my son?'

Thursday, February 3, 2011

Moms and Dudes:

One of the questions I most fear/hate to get when dealing with visitors to Dude-world is, "Where is his mother?" I know it's mostly unintentional but the translation I always get is, 'What are you doing here?' I guess part of the problem is that I don't consider it abnormal that for all intents and purposes (other than quasi/legally) Dave really doesn't have a mother. Oh, he's got a mom. And he calls her 'mom', when he's not calling her 'Raine' (mostly when Dad has him down on the couch and is unfairly tickling him to death). The people that ask the question don't want to know where his 'mom' is, the people who know Raine don't ask anything, they just know she's his mom. So when I hear, 'But what about his mother?' I tend to get a little cheesed.
    Mostly I get asked this question by nosy social workers, and anyone who thinks they get to ask condescending questions and is a bit too certain of their own authority. Depending on how pretentious they are they either get the short answer or the longer version. Nice people get the short answer: She lives in Kansas City. The ones that are more obviously giving me the 'second-class parent' treatment get the Reader's Digest version of events as kind of a warning shot. And if that doesn't shut them up I unload the second barrel. Oh I'll go on for an hour about all the shortcomings my ex has as a 'mother'. I think what throws them is the tone of utter indifference I use when talking about it. So if this ever gets posted I want to make one thing perfectly clear (inadvertent Nixon reference... Freudian?). I just don't care about the stuff she did to me, or 'because of me' or using me as an excuse. The stuff she did to Dude is another matter.
     Okay then, with that in mind let's skip over a bunch of the rough stuff (after all I think you're nice) and just skim over some of the relevant data. One June, shortly after your intrepid heroes moved to Da' Burgh, while they were still broke from the move, and Dude not yet being a legal resident of PA, the Wicked Redhead of the Midwest (you know, what's-her-name) went to the Missouri Pillars of Justice to keep Pittsburgh from experiencing the wonders of Dude-ness. Since no one was there to refute her nefarious statements before the bench the Dude was wrenched back to the Homeland (effective the 25th of October). Utter darkness covered the land for most of the next 2 years, but eventually negotiations were begun to regain the Dude-right for all (or at least the Pittsburgh Metro area). But the Redhead, in her cunning, wouldn't write anything down, or redress any of her scurrilous lies about the Dude-Dad and so the negotiations faltered. Then one day, (a few months later) while at work, D-D received a phone call from the Brain-Bender for his Education Zone(School Psychiatrist) telling him of the unexpected return of the Dudeness. The conversation went something like this:
'Your son is here'
'Excuse me?'
'This is Mr. H isn't it?'
'Yes it is.'
'Well I'd like to let you know that you need come and pick up your son. But you should be here before 4:30, because that's when I go home.'
'Uhhhhh. Are you sure you've got the right guy? That can't be my son, because my son is a thousand miles away from here. And even if he weren't I don't know where you are, anyway.'
'Well this is Dr. B at the A High School, and your ex dropped David and some of his stuff here, and he's been waiting 2 hours for you to come pick him up.' She was starting to get a bit huffy, like I was the one who lied to her.
'Why the hell did you let her do that?'
 Let's recap to this point: Dude's 'mother', without any communication in over 6 weeks, or any notice whatsoever, drove 1000 miles, abandoned her autistic son with a woman she'd never met before and he'd only seen once, lied to her about me knowing about the whole thing but left her my work number 'in case he doesn't show up', left a very rude note in my mailbox (first line: Congratulations, it's a boy!), and without any communication with me at all, slipped out of town and went back home.
'Mr. H, are you coming to get your son or not?'
   Ah, and there she played the trump card. Believing that I was some sort of deadbeat moron who either didn't remember or care about my son and unwilling to be convinced that she'd been duped by my ex, she avoided the whole issue by instinctively playing on my unwillingness to use my son as a pawn in anyone's game. So after a bus ride to Raine's work to get the Mothership (Caprice), and much cursing at and about petty bureaucrats in general and psychotic Redheads in particular I regained my key to Dude-World. And quite frankly, he was a mess. For the next three months I was reminded of Patty Duke's role in The Miracle Worker repeatedly. His behaviour was atrocious. He'd lost his manners, half his vocabulary, and his potty-training. He was combative and frustrated. This was not the happy-go-lucky babble box I remembered. He was more like some feral-boy version of the son I'd lost years before and was raised by wolves. Rude ones. He was very nearly kicked out of both the special needs program and the school that implemented it. I've seen some of what they put up with on a regular basis, and to be beyond their help is some kind of accomplishment, let me tell you.
     Through all of this there was one constant. One thing that kept me from sliding over the edge and him from falling back into the abyss. His Mom, Raine. Unlike the tales that Hollywood likes to tell, there are no saints or sinners when it comes to raising an atypical child. There are people that strap in, buckle up, and get the job done, and there are those that don't. There are no 'Saints' in this house. There have been times when either one of us wanted to strangle him. (Luckily for him it's never both of us at the same time). Handicapped children aren't intrinsically wonderful, beautiful, or even very much fun to be around. They're love-sponges that soak up all the love you can give them. And by that, show us that we have ever so much more love to give than we ever even knew we had. 'Mothers' or 'Fathers' don't always understand, but moms and dads do.
     Through the efforts of Dude-Mom and ham-handed help from her trusty side-kick (me), there were some palpable improvements by the end of the school year. And by the time the next season started we had to work a bit to convince them that we hadn't just cloned a Dude of our own and substituted him for the one they'd had three months before. Each helping the other, we worked as a team (go team!!) to get David back to the frustrating, stubborn, noisy, wonderful Dude he is now. (it's a work in progress) I think we each thought the other one had the tougher job. I know for a fact I was completely baffled at how to get him re-potty trained. But she stepped right in, came up with a plan, gave me my script (which I followed diligently) and, other than some occasional backsliding, in an extraordinarily short time he was trained. I mean, he still doesn't understand what the big deal is, but he does it! Atypical or not, there are certain things where I'll take 'doing' over 'understanding' every time. Using the toilet is one... .Raising Dudes is another.