Adventures in Autistic Parenthood

Thursday, March 31, 2011

On the Trail.... ish:

Dad's pic of Dude...  

While Dude takes this of Dad

 Occasionally I can talk (blackmail/force) Raine and Dude to come with me when I wander about Western Pa. The other day was one of those times, and seemed tailor made for both of them. There is a very small State Park in northern W Virginia called Tomlinson Run. Around here a 'run' is a small stream, or what we from Kansas would call a creek. Why these people can't just use regular English, I have no idea.  Well, after having driven past the road to it several hundred times over the years, I finally decided that a scouting expedition needed to be mounted. Since this mainly involved driving around, and in hopes that this would count as a visit when I wanted to return and walk the trails (But Dear.... we've already been there!) Raine and Dude were both happy (more or less) to come along.
  The park itself is pretty nice. It's kind of in the middle of nowhere, nothing but small villages for miles around. It's a nice blend of rural community park and out-door areas. They have a small water park and a mini-golf alongside camping, picnic, and wilderness trails. There are also an inordinate amount of trout fisherman working the stream and lake banks for 40 degree weather. (although I did notice that no one tried wading) After driving around the park we stopped to (briefly) get out and check the creek at the entrance to a boy scout campground. The pipe-gate was locked and a small-ish tree had fallen down on the log-barriers on the one side. This offended Dude for some reason, so nothing would do until he had pushed the tree off the barrier. Raine or I would have helped except we were too busy taking photos of this monumental task. After he completed his 'Labor of Hurcules' we  walked down to the creek. Despite the fact that it was only in the mid-40's with a light wind, I began to hear complaints about 'arctic conditions', several mentions of 'freezing to death', and 'finding our frozen bodies in the Spring' (despite the fact that the car and several fishermen were in plain view the entire time). David laboriously climbed over the pipe-gate to get to the car, instead of walking around. I thought it was cute, so I asked him to do it again for a picture. He ducked under the gate to the camp-side, then crawled over it again to get to the car-side. There is a certain order to Dudeworld, to get in you go under, to get out you go over, that's just the way things are done.

Sun and Shadows

    A couple of weeks later I purchased a new camera, that took me a week to talk myself into buying.  OK, Some boring (to some) camera stuff: I learned to take and print pictures in school on a 35mm Pentax K1000, and was given the run of the photo dept and exclusive access to the expensive lenses. I loved it, but once I had to start buying my own camera, film, developer et al, I decided it was a hobby best left on the shelf. When I moved to Pittsburgh Raine had a nice 35mm Minolta XGM rig with several nice lenses (which I added to) but once again, film and developing were too expensive for the amount of pictures I wanted to take. Enter the digital age and the 6.5 Mp Kodak Easyshare Z650. Finally I could take as many pictures as I wanted and all it cost me were batteries (rechargeable) and the time to download. Then the battle of the megapixels. I upgraded to a 12.1 Mp Nikon Coolpix 110, a camera I loved at once. But still missing some of the flexability of an SLR, I recently upgraded to a 14.2 Mp Nikon 3100 DSLR. I immediately wanted to go and take enough pictures to impress a Japanese tourist at Disneyworld. Since it was a GameStop weekend I figured it wouldn't be too difficult to get Dude to come along with me. Actually on GS weekend he has to be pried off me with the jaws of life. So little encouragement was needed to get him to accompany me back to Tomlinson Run Park.

Bright Water

   The first trip to TR Park Raine and I had discussed giving David the Kodak to see what he would do with it. Given the opportunity Dude will hang over my shoulder or lean against my arm to watch the screen to see what I am doing.  She says it was my idea, but I'm still pretty sure it was hers. I figured the pictures didn't matter, his fascination with technology would give him something to do. At any rate when Dude and I got to the park I uncased the smaller camera, showed him the power switch, lens cover and shutter button, briefly mentioned how to focus ( He was so wrapped up in the camera I'm not sure he heard me) and off we went. Every time I stopped to take a few shots David solemnly removed the lens cover, turned on the camera, pointed it around, and was evidently taking pictures. I'd take my shots, then wait for him. He'd move the camera around, press the shutter then say, ' That's an A+ picture!', then he'd very carefully shut the flash, turn off the camera and replace the lens cover, and we'd move off to the next scenic area. When we'd been out of the car for a while (it was a chilly morning) the 'A+ pictures' turned into 'Yep, that's the shot. We've got to get these pictures back to the Bugle!' I took this as an indication that he wanted to go back to the car (and then to GameStop) and not that he'd actually managed to get a shot of Spiderman. The whole trip I never told David what to shoot, or how to do anything, I turned him loose with the camera, and he was on his own.
   After an hour or so, Dude suddenly decided he was a pro and grabbed the strap (around my neck at the time) of my brand-new Nikon DSLR, saying, ' Guess I need a new camera!!' as he tried to snatch it without lifting it over my head. Needless to say, that wasn't happening. I said, 'You may need a new camera, but it ain't this one!' I mean, I love my son, but he's not getting my brand-new camera in the woods. What if he decides to become some sort of feral hermit photographer? He's so skinny he could duck behind a sapling and I couldn't find him. Then were would I be? Hunting for my camer... uh.. I mean kid, out in the woods with no Mac and Cheese to lure him in.

Shadows of Dudes

   When we finally got home (after getting Kung-Fu Panda at GS) I told Raine about our adventure (?) and she immediately wanted to see Dude's pics. He had actually taken 47 pictures and the easiest thing to notice that only one of them was blurry. That's better than I managed my first two trips with that very camera. Looking closer we noticed something we really didn't expect. All of his pictures had a definite subject/theme,  they were all framed well and used the natural light to good advantage. You could see that none of them were random. Raine almost exploded with pride, and I wasn't far behind her. We scrolled through his pics with jaws dragging the floor.  I mean, I was there, seeing the same things but it was just amazing to view that part of the world through Dude's eyes.
  BTW All of the pics in this post (other than the one with him in it) are a sample of the very pictures I was talking about. I have to agree with David, these are A+ pictures. I wonder what he'll do once I show him how to use the zoom? Then again, the way he's going I probably don't have to show him.

Monday, March 21, 2011

Raine Cave:

Rainepic: Big Dude hiding..
Did you ever see a hound dog try to hid behind a cat?

I'd like to return (briefly) to those thrilling days of yesteryear. One of the most often asked questions when people from da 'Burgh find out I'm from Kansas is, 'How did you end up here?'. It's also, strangely enough, the most popular question from people who knew me before I moved to Pittsburgh. I'm not entirely certain of the reasons for this. It could be that people are curious as to how I ended up a thousand miles away from my home in an area where I have no family or history. It could also be that they're shocked that I was allowed to leave my normally supervised area of the country, or that I was allowed to move into the area without the news agencies covering it like any other natural disaster. No matter what the reason my answer to the question is normally: 'There are only 2 reasons a man moves such a distance.... and I'm not making a whole lot of money.'. The inference being (of course) that a woman is the cause. Also, as a side-benefit, if they're looking for a scapegoat, I've set the blame squarely on Raine's shoulders. (It was her! She snuck me in!)

    Raine and I had been typing at each other and talking for more than a year before her curiosity overcame her natural caution and she decided that she had to make certain that I wasn't a construct of some fiendish computer's imagination so she invited me to visit. Strangely enough, I wasn't immediately escorted back to the border, and even stranger I was even encouraged to return. After several such trips I decided that it was time for the ultimate test.... The Dude-visit. I picked the long Easter weekend for the visit to give her some extra Dude-time, basically so she couldn't say later that she hadn't been adequately warned.

Almost makes me look noble or something

 To say that I was nervous on several levels is an understatement comparable to 'I dropped the nuclear device, and it went boom'. There were many things to furrow my brow: I was still pretty new to the whole single parent thing. With Dave being 6 years old there were still a lot of things I didn't have any experience with. There was Dude's first plane trip. (he loved it) Then there was dealing with David in 3 crowded airports. (huge blood pressure spike, but no real problem). Then the biggie: How does a woman that you really like who's never dealt with an atypical kid deal with the running dialogue that is my youngest son?.
  Once again oddly enough (most things
around Dude and I are odd, so you'd think I'd be used to it by now)after some initial uncertainty she adjusted quite well and incredibly quickly. There's a minority opinion (Raine) that her meeting me was akin to jumping into freezing water, and after that she became kind of numb to any other Hoffman-shock. The conflict that I was so worried about almost never happened. The 'almost' kind of set the tone for our triple interaction from that point on.
   You see it wasn't David's constant talking, or his bulldozer-like attitude about obstacles, or even his tendency, at the time, to wander out of the house to knock at random doors in the neighborhood. All of which she handled with commendable aplomb and great patience. The conflict, it seems, was over window coverings. Yes, that's right, window coverings. Raine has been subject to migraines for quite some time so she tends to think that the proper use for windows is as a backdrop for curtains. The windows in our house all have mini-blinds or shades with curtains covering them. Many of the curtains are made of heavy fabric that would have saved countless English lives during the Blitz in WWII. This gives our house a warm, cave-like atmosphere that definitely has the Raine Seal of Approval.

Dadpic: You can tell by the look in his eyes...

  The very first morning after our arrival in Southwestern PA I was sitting in the front room, my mind still slightly unsettled as to how everything was going to work out, when I witnessed a bizarre ritual. While Raine was in the bathroom upstairs David walked down the stairs, climbed up on the couch, pushed back the curtains, and opened the blinds and the two windows behind them. He proceeded from there to open every window set on the first floor, curtains, blinds, and windows, letting in light and fresh air. I was slightly puzzled, but thought it was kind of cute, and watched him with a slight smile. As he finished in the kitchen I realized that Raine had finished earlier and had gone into the bedrooms before coming downstairs. She and Dave passed each other on the landing, each barely even noticing the other. I then watched Raine go from room to room, muttering, closing all the windows, blinds and curtains that my son had worked so hard to open. I quickly muted the TV, fairly certain what I'd hear from the second floor when I did. Yep, you guessed it. The sounds of my progeny reversing what Raine had done to reverse what he had done to the second floor portals. Feeling something like a comedic anthropologist, I quickly un-muted the television so as not to disturb the results of the experiment that was playing out before me.
   Raine had paused to do something else while securing the house from the Deadly Rays, which gave David all the time he needed to complete his mission and return to the ground floor, passing Raine in the dining/computer room (each, once again, nearly oblivious to the other). And as she was asking me if I were the evil culprit breaching black-out conditions, he was once again allowing light and air into the Sacred Dark Spaces. I informed Raine that I hadn't stirred from my current position since before she had gone upstairs so she would have to look elsewhere for the Dastardly Fiend. Max Sennet, Charlie Chaplin, and the Three Stooges combined couldn't have worked better timing into what happened next. As Raine turned to her left to go back into the kitchen, Dave walked quietly behind and to her right, perfectly syncronizing his pass with her spin, and as she made her pre-occupied way to the back of the house he once again opened the three windows in the front room and went back up the steps. She must have been pre-occupied, because she didn't notice that the windows had been opened until she started back into the living room. The really funny thing was that she had been muttering to herself, while closing the windows, about them being opened, and he was muttering (quietly) to himself, while opening the windows, about them being closed. I, in the meantime, was sitting innocently (sort of) on the couch trying not to explode with laughter and destroy the whole event.

Rainepic: Two Dudes walking
    Raine came back into the room and using her psychic-female abilities deduced that I was somehow involved in the plot to uncover her cave. Actually most men are pretty transparent when they think something's funny. I initially tried for total denial but when cornered I admitted that I was sort of the cause of her exposure to fresh air and light. Or, at least, that I'd brough the cause with me, and caused him in the first place. She then tromped up the stairs to have a little talk with my heir-apperent about blackout rules and who actually runs the roost. And, as I said, that pretty much set the tone for our time together.  When Dave does something that tweaks Raine, she mutters about it a bit, looks over at me and decides I'll be no help at all, goes and talks to him about it, and I pretty much sit on the couch and laugh.
   Don't get the wrong idea. Raine stepped into the Dude-mom thing like she was the missing part to our machine, as naturally as if she was biologically activated. He calls her 'Mom' and her mother, 'Grandma' and it's tough to remember sometimes that they're not related to him by birth.

PS: 'Rainepic's are obviously pictures taken by Raine... mostly without my permission. She didn't seem to think she needed it for some reason.

Tuesday, March 15, 2011

That Doesn't Mean I Don't Have it Tough:

They (whoever 'They' are) always say 'Misery loves company'. I personally think that's total horseshit. Think about it. When you're down in the dumps, kick-the-cat miserable to the point were even Lurch seems happy and people on Prozac piss you off by flaunting their cheerfulness, what is it you actually want around you? Other than the occasional perky person that you're allowed to strangle, that is. You don't want people who're just as miserable as you are. What's worse than one person bitching about how screwed-up life is? Add one more, and all you'll get is a pissing contest about how one of them is in a deeper cesspool than the other one. And how much fun does that sound like boys and girls?
No, when you feel the heavy blanket of doom settle around your shoulders what you don't want is someone who's life is just a more fucked-up version of yours. Oh, I guess it's morally uplifting if they're soldiering through or they've pulled themselves out of the mud when they've found themselves in a hole just a little deeper than the one you appear to be in with a slightly larger truckload of manure just backing up to start dumping on them. Unless you actually are a self-centered moron who just likes watching that sort of thing, you naturally want to reach out and help in some fashion. But sometimes things are so extreme you have no idea where to even start, and saying 'I sympathise' sounds (and feels) really really trite. 

I want it stated for the record (sorta) that I didn't start this blog to air my trials and tribulations dealing with raising an autistic child. It was originally (and for the most part still is) a way for family and friends to hear stories about and see pictures of Dude without my actually having to do anything but babble via my keyboard. This is my cheapscate way of getting out of thousands of dollars in travel expenses as they all live many, many miles away from me. (not sure if it's their choice or mine)
 But recently I started doing something I've never done before. I started looking at other blogs written by parents of special needs kids. I was researching statistics on 'single parents of handicapped children' for something else I was writing, then got curious and Googled 'Single Dad handicapped child statistics' and in and among the links for actual statistics was 'Single Dad-Disabled Daughter'. I read several of his posts and kept saying to myself, 'Man, this guy's got it tough!.' He has two kids, the first two ever diagnosed with a condition that makes autism sound like a summer cold. His daughter lives with him and his wife (divorced) has his son in another state and living in a 'care facility'. (wonder if she's a redhead)  From where I'm standing this guy's 'hole' is the size of the Kennicot Copper Mine and they've got the 8th Air Force making manure-bombing runs with B52's. And he seems to be handling it all with drive and humor and a lot less bitterness than I could manage. I'd be grabbing my gun and looking for a clock tower somewhere. This guy is way outta my league. It's like Mother Theresa to a lapsed Catholic, I just can't relate. (the analogy is also true in and of itself).

I looked at several blogs on his Blog-roll, and naturally enough they were mostly by parents of severely handicapped children. All of which had much higher licenses to whine than I do. I actually started to become offended, like their tribulations in some way negated mine. In a fit of total psychosis I even snarled at the monitor, 'Just because your kid is screwed up, doesn't mean mine isn't.' What I actually said was even more ridiculous but that's the gist of it. Then it kind of hit me. I'm almost certain that there's a group of 'typical' parents out there that feel the same way when looking at the troubles I, and other parents like me, have with our children. It's got to be a natural, if rediculous, reaction to imagine that someone else's trials and tribulations make your complaints sound rather silly.

   Let me state my humble, yet all knowing opinion: Raising any child is tough. It's the hardest, most thankless job ever invented. As a parent you have no idea if what you're doing is even the right thing to do, or the right time to do it. You'll probably never see, or understand, the effects of what you're doing and even then you'll never be sure. It's always easier to figure out where other people are doing it 'wrong', and all those other nosy people don't know what the hell they're talking about with their 'critisisms'. Your parents had it much easier than you do, and your children will never be as apreciative of their parents as you are of yours.
   It's like Dante's Circles of Parental Hell, people. Or being banished to Cleveland. We're all in 'hell' it's just a matter of degree. Yes, I have it tougher than a lot of parents. No, that doesn't mean they don't have it hard. And: No, it doesn't mean that there aren't people out there that look at what I do and go, 'Pththh! Please! I'd take your life in a heartbeat!'
   If I had a point it would go something like that, anyway. 

Monday, March 7, 2011

Are You My Buddy?:

I know he's scheming about something, I just don't know
what it is.
  Most of the time David has a problem showing affection. No sudden smiles, impromptu hugs, or affectionate touches. The only laughter that comes from him is generally derisive and happens when he thinks we've done something silly (by his standards) like when I've broken the car or fallen down, cracked my head, or basically anything that makes me say 'ow'. Other than that it's sometimes difficult to figure out if Dave really ever notices that we're not characters in one of his games.(Sometimes I'm not so sure we're not) Sure, sometimes his movie/game quotes are uncannily apt, but mostly they have little or nothing to do with reality as we know it. (Dude's reality is unknown and unknowable) He only asks questions for things: 'Can I have some water?', 'Can I play the game?'. I've never heard him start a question with 'Do you remember...?' or 'When did you...?  And he can't answer any of those questions either. You can ask him, 'How was your day?' or 'What did you do?', or even 'Do you like...?' until you're blue in the face, and the only answer you're going to get is, 'Yeah' or 'No'.  98% of all the questions that David has been asked in his lifetime have been answered 'Yeah' or 'No'. The other 2% are answered with, 'More ketchup please!'.    There is one time when I'm fairly certain I have David's total focus. GameStop weekend. Especially when he knows we aren't going until Sunday. Saturdays are sooo wonderful when he's concentrating totally on 'being a good boy' until Sunday. Recently we'd had an entire week of Smileys in the book and Dave was, as usual, all fired up about it. He kept telling/asking me, 'We're going to get the games!', 'Yep. That's all of them!', 'We've got to get to the GameStop, remember?'. Over and over again. Nothing would do until I acknowledged that we were indeed going to GS. Thinking that something might be rotten in the State of Dudeworld, I would only go so far as, 'We'll see.' That seemed to be more than he was expecting though (which tipped me off even further), and he went off, cheerily repeating, 'Yep, we'll see!'
    Come to find out he had reason for concern. The 'Good Notes' policy had been (by necessity) extended to the bus because of certain over-enthusiastic behavior. So with School, after school and the bus ride covered by notes or actual Dad-presence he had to go somewhere else in his genetically-driven need to find the loophole in the good-behavior straitjacket. So he began breaking the 'Getting ready for school' code. Not a good idea. Because Raine is a narc. Behavioural issues are my bailiwick and she has no problem ratting him out to me when there's something (very little) that I should deal with.
Contimplative Dude
   My informant, informed me (that's what informants do)  that the prisoner (Dude) was resisting head coverings and the prescribed stately pace to the transportation. In other words, he refused to wear his hood, or snatched it off as soon as Raine's back was turned. And once the door was open he'd bolt out, run down the walk, out into the street, around and up into the bus. The problem with the hood thing was that it was often 10-20 degrees in the morning, and we didn't want a Dude-cicle, or have to miss work to nurse him through a cold. The running to the bus wouldn't be a problem with your typical teen. The problem is that David doesn't seem to care whether the bus has come to a complete stop... or any stop at all, before he bursts down out into the street. I've said it before but Dave has absolutely no sense of personal danger. The up-side of this is that he's rarely worried about anything. It's the people around him that are in danger of uncers, heart palpitations, stress-induced high blood pressure and aneurysm.
   Anyway, knowing his gaming future was in doubt Dave started to act really weird.... for him. He actually walked down the steps at 8:30 to tell us 'I sure am tired, is it time for bed?'. To which we instantly replied, 'NO!!', knowing he'd be up at some ungodly hour of the morning if he went to sleep that early. The next morning I got up fairly early (for a Saturday) and Dude was lying in bed, awake... and quiet. Normally this does not happen. If he wakes up before we do, he'll walk into our room (that's where the Game is), gust a big sigh at our recumbent forms and crawl into bed with us.... Waking us up instantly. This was kind of cute when he was 6... and small. Even then he would squirm around and end up taking up most of the bed. He's neither 6 or small anymore, so he takes up quite a bit of the bed just laying down. This has the preferred (by him) effect of immediately getting Dad's lazy butt up out of bed. Unfortunately for him, the only effect this has on Raine is getting us peremptorily ordered from the room.
  Eventually, however, even Raines wake up an come downstairs. Actually when Dave hears the sink in the bathroom start running, so does he. He bolts up the stairs while loudly asking, 'Can he have the game, please?', without even considering the possibility that I might say 'No.' All this happened in normal fashion, seemingly negating the oddity of earlier in the morning.
  Several hours later a strange clone of my son descended the stairway and asked if he could get a drink of water. Actually the strange part came when he was (supposedly) headed back up. He stopped in the living room, put his hand gently on Raine's shoulder and said, in a soft, warm, velvety voice I'd never heard from him before, 'I'm hoping you're having a really good day.' I turned toward the two of them with a confused scowl, thinking I couldn't have heard that right, then realising that I'd actually heard what I thought I had by seeing the shocked expression on Raine's face. She was baffled, but replied, 'It's okay so far, thanks for asking.' He then walked over to the chair I was sitting in, leaned over and hugged me asking, 'Are you my buddy?' Even more confused, I replied, 'Yeah... so far.'  He then patted my arm and said something (I was too stunned to actually hear it) that sounded like it came directly from a bad Chick-flick. He then leaned back in for another hug and, still using the same velvet-voice, said, 'I love you, Dad'. If I hadn't already been sitting down I'd have ended up on the floor. Never, in his entire 16 year career, has David said that where it wasn't solicited somehow. He just doesn't, EVER, initiate that sort of conversation.
Where is all this coming from?
   Then he said, 'I think I'll be going now.'  And he walked up the stairs, stopped and said, 'He's being a good boy. Yes!'
  Ahh, a light dawns. It seems that the dual-lecture about being a 'Good Boy' in the morning has struck a cord. Devious Dude-Dads can use this to their advantage (and do).
   A couple of weeks later all three of us took a rainy-day journey to Ohiopyle State Park. Raine had nearly insisted we go somewhere before checking the weather report, and I didn't want to take a chance on missing the opportunity, even if it was raining. Any time this woman is willing to leave the cave I am going to GO. We where on and around the Youghiogheny (Yawk-a-gainy) river at the Ohiopyle Falls when I slipped under one of the observation platforms to get a better angle for a picture of the falls. Dude, who had been reasonably quiet and fairly well-behaved up to this point, mostly because he'd been plugged into my mp3 player during the drive, suddenly decided that he didn't have to listen to Raine anymore. He took off his hood, got out from under the umbrella, and walked over to the platform and didn't come back. Big mistake. I've explained before that Raine is, essentially, a narc. Once Dude gets passed a certain limit she's more than happy to bring down the wrath of DAD on his head. Raine had enough problems wondering how to keep track of my sodden body once I'd potentially fallen into the river to have to deal with autistic insurrection. So, once I'd returned from my potentially hazardous mission a Courts-Martial was convened and the ruling handed down was: No mp3 player for the rest of the trip without a major attitude adjustment. There was much sadness in the ranks.
Thank you for listening
   After that we drove to our next photo-op. Cucumber Falls, on a tributary of the Yough (Yawk= Youghiogheny) (don't ask me, I don't know how they get the pronunciation of half of this stuff) you couldn't pry David off of Raine with a hydraulic jack. He constantly walked holding her arm at the elbow, hood up, leaning under the umbrella, and wouldn't leave her even when it was potentially dangerous to walk side-by-side. Every once in a while he would lean even closer and softly say, 'Thank you for listening.' Dave has a problem reversing pronouns so it took us a couple of times to understand that he was actually thanking himself for listening to Raine. He had his suck-up engines cranked to Warp Factor-10 and was prepared to send them into Emergency Overload to get his tunes back. Once we got past the 'Just one more shot' stage and were at the car a Parole hearing was commenced and it was decided to return the mp3 on condition of continued good behavior. Which lasted pretty much until he got back to his games and didn't need the player anymore.
Silly People
   I think the leniency of the Parole Board can be attributed to finding out that Cucumber Falls Park (a silly enough name) was renamed from Keister Park. So basically we'd gone to Butt Park to look at Cucumber Falls. I'm not sure if that means anything, but it sounds ridiculous.