Adventures in Autistic Parenthood

Monday, January 17, 2011

Different Boat, Same Creek, Same Paddle:

When writing here I normally stick to the lighter stuff because... well, basically I think I'm better writing with a humorous bent, and I'm pretty sure anything else would begin to sound like whining in short order. But, without a doubt, there are some not-fun things about raising a handicapped child. One of the more pervasive is isolation. There are plenty of people that understand regular everyday earth-shattering problems. Someone whose ear you can bend and be assured they know where you're coming from. But with even the ordinary things an 'atypical' parent goes through? Just a little tougher to find someone like that. But bearing that in mind, I was reminded recently that tears can't make a house sad where there is laughter. (no, I didn't steal that from Hallmark, I just made it up)
  Dude and I went shopping at not our usual Jahnt Iggle (Giant Eagle to translate from Burgh-speak) a semi-local grocery chain. Shopping with David is always something of an adventure, but especially so when it's a non-GameStop weekend. You see, Dude has a strict 1 store-back home policy. Oh, he can be very patient about shopping when there's a game waiting to be picked at the final stop. But any other weekend he feels the pull of electronic adventure tugging pretty hard. I don't even want to talk about the times I've made the mistake of making GS our first stop. Let's just say he likes to hurry things along a bit, and leave it at that.
   We'd already been to Sam's Club and Dude was, once again trying to hurry me along, and after the fourth or fifth time he'd run into me with the grocery-cart I was getting a bit irritated to say the least. But despite the constant danger to my ankles we'd fallen into our usual shopping routine with Dave constantly babbling and Dad either commenting or ignoring him until he'd gotten too loud or exited. Not wishing a constant diet of Mac&Cheese and things covered in ketchup I usually ignore most of Dude's food requests unless it's something I'm specifically buying for him. One of the things I try to keep a constant supply of is little, individual sized bowls of applesauce. It's one of the few fruits/vegetables without cheese on it that Dave will consistently volunteer to eat and I'm all for that. As we passed the canned fruit isle this day, however, there was to be a change in the routine. David immediately started scouring the shelves stating loudly his preference for peaches. Not peaches and creme', not peaches in jello, but plain diced peaches in juice. This was more difficult to find than you might imagine as it seems that most consumers have gone beyond the need for mere plain fruit in its own juices. But found it we did and once it was safely in the cart and we were proceeding down the isle we were confronted by something else unusual.
   We had just passed a woman and her cart looking at the bottled juices and I as I started my own search I heard a fairly perky female voice break into the endless stream of vocalisation that is Dude.
"I think you ought to come home with me." Ok, that had my attention right there. I took a quick, startled look at a pleasant looking woman in her thirties pushing a cart with many toddler-food packages in it. "You have good ideas." It was obvious at this point that she was speaking to Dude.  Having grown up with it, I'm used to the easy, friendly way that Midwesterners sometimes accost total strangers with familiar conversation, but it doesn't happen very often in Pittsburgh and I get funny, startled looks from the locals when I have a flashback and start doing it, so this was amazing. Not only that, she was talking to David just the same way that I do, speaking to him like she would anyone else, and not trying to force or expect any sense out of him. This woman was no rookie. I did a quick ear-check and Dave was still extolling the evils of jello and creme' in any proximity to his peaches. She nodded and said, "Do you have any ideas for dinner? Because I'm fresh out." He immediately interrupted his dialogue to answer, "Mac and Cheese for dinner!" (Big surprise)  I noticed that the woman never looked to me for translation, which is unusual. Then I jumped in with, "You may not want to take this one home, he's a handful." She looked at me and smiled, "Aww he might fit right in, you never know." I laughed, thinking that this woman had no clue what she was talking about, and we each went on our way.

  Now if that had been all I would have thought that it was something of an anomalous conversation, wondered about it for a while, and then went on. But after we'd completed our shopping and finally found a line that had less than 300 people in it, it turned out we were right behind the very same woman. As we were waiting for the person in front of her to finish his transaction we started up our abbreviated conversation again. It seems that she was so comfortable with Dude because her youngest daughter, of three, has Asperger's which is an Autism Spectrum Disorder, similar to Autism but not exactly the same. (There is some dispute by Doctors and List-Makers about which is what and how much of one is actually the other, or if there's any difference at all.) Then she said some things that sounded eerily familiar to me for some reason. "People say, 'Why me?', why not me? It's got to be somebody." Startled at hearing my own words thrown back at me, I said, " I know exactly what you mean." It also seems that when her husband realized what the diagnosis actually meant he freaked, tried to tough it out, decided he couldn't handle it, and left when her daughter was 11 months old. That sounded vaguely familiar as well. I mean, change of sex and add red hair and... It hadn't been all that long ago, but she was remarkably equitable about it, saying, " He's a really wonderful guy, just a lousy parent." I chuckled and responded, "Well, you did one better than I did." She looked at me, confused. "At least your ex is nice." She gave me a smile of genuine sympathy.
  I could have gone on from there and gushed out my problems. It's the one thing that's almost compulsive about raising a handicapped child, when you find someone that actually understands the trouble you have it becomes almost a physical need to say all the things that no one seems to completely comprehend. Then I had a flash. This woman is just like me, trying to go at life with the same attitude and humor, but she's got it two kids and no Raine tougher, so shut that yap you're so fond of flapping and do the one thing you can do that really means anything to her. Listen.  And that's what I did. For the next 15 minutes I let her know that she wasn't alone, that there was at least one random individual that knew exactly what she was going through, exactly how tough it was and didn't act like she wouldn't just naturally get through it.
  She finished checking out, we traded 'Take care's and she went on her way, not ever knowing that she gave me as much by talking as I may have given her by listening. I never got her name, she never got mine, we never seemed to need introduction, because there for a few moments we were as close as many family members never get. Paddling different boats on the same lake, hoping they're not the Titanic, but making no apologies for doing a damn good job of it. Neither wanting sympathy, merely understanding, and finding it in the checkout line of a grocery store of all places.

Sunday, January 9, 2011


I lived in Orlando Fl for about 7 years, working as a stagehand/roadie. Somewhere in the basement is a stack of crew shirts, convention mementos, backstage passes, and other odd stuff from that surreal time. Working as a roadie is the kind of job that's cool to talk about after you don't do it anymore. It's fun to see the looks on people's faces when you can tell them, 'Elton John is a pretty cool guy' (but his manager is a pr*ck) or 'Jimmy Buffet is about like you'd expect him to be' or 'I've talked to Colin Powel' or even 'I saved my buddy from being killed by Barbara Bush's secret service agents'. (All true, btw)  But while you're doing the job you wonder what evil thing you must have done in a previous life to have to suffer such a horrible pennance in this one.
  One of the more important things to do with the job is the backstage pass, with it, you get into the gig to make your money. Without it, you're just one of the nameless rabble looking for a concert shirt. Sometimes it doesn't even have to be the right one, and you can still get in the gig and see the show. It's also a kind of Badge of Honor in a strange sort of way. You're doing a job that not many people do, and not everyone you work with even gets them. They're a kind of walking resume' that you can show off to make other roadies jealous that they didn't work that show. And I've heard rumors that there are a certain group of females willing to do all sorts of interesting things to obtain them. (I can't say for myself, that's just what I heard) But in all those three hundred and some odd passes there's one that's just a little more special than even working The Who's reunion tour and that's my Dude-Pass.

X-Box 360!!!!

    As part of pre-natal care (as some of you may know) is the ultrasound visit. I've been to several and they're all the same. You wait in a tiny room stuck to the side of a hospital (ORMC), or something converted from a storage room (ACCH), or, for all I know, stuck out in a shed in the parking lot. No matter where it is, they seem to have the crappiest waiting rooms and either the meanest or most distracted receiving nurse depending on if your appointment was on an even or odd day. As I remember it the procedure works something like this: First you wait 30 minutes beyond your appointment time, despite the fact that they insisted that you show up 15 minutes early 'just in case'. Then they take the woman away for some strange female Voudoun (voodoo) ritual called the 'chilly goo torture' and leave the man out in the waiting area with 3 metric tons of outdated magazines and 10 pregnant women. And let me tell you, there's nothing in the world to make a man more nervous than a room full of natal hormones. Even the women whose condition you didn't cause look at you like it's all your fault. Once they've done whatever it is they do in there, the male is finally allowed into the room and despite the fact that the procedure has already been done they have to re-goo the belly, drag the machine over from the side of the room and basically start all over. During the re-run they ask the 'Big Question'. ie: Do you want to know the sex? (I thought sex was what got us here in the first place) Now when we answered 'yes' the technician skillfully, and quickly, gave us a split-view of our child's body, which was pretty freaky. Then she did some sort of twist/slide/wiggle and zoomed-in to a view that would get her 2-5 years as a child pornographer if she'd done it a few years later. Obviously this was not this woman's first time.
   So, there I am, staring at my (obvious to me) son's... well.... package, let's say. I'm just starting to get all stereotypically prideful male, (cause, let's face it, zoomed in like that the kid looked like a porn star) when from the general direction of the table comes a strange question. "What is it?". The nurse and I both looked down at the distended redhead on the table in utter confusion. I, having the highest IQ in the room, immediately asked the most intelligent question saying, "Huh?" Which drew an equally intelligent response from the table. "What is it? What are you looking at?". The nurse and I exchanged a look of near perfect
 incomprehension and simultaneously checked to make sure that she could see the monitor. She could. We checked to make sure her eyes were open. They were.  Thinking that perhaps we didn't understand the question, or impatient with our lack of intelligent (?) response, Ellie asked once again, slowly and clearly, " What. Are. You. Looking. At.?". Afraid that I was over thinking the whole problem, I chose the only answer amongst the thousands of questions bouncing around my skull. I pointed at the sonogram machine and said (and I quote), "Boy parts."  This absolutely cracked up the nurse. In her 10 years of natal viewing she'd never heard it put quite that way, and it took quite some time for her to gain enough control to continue on to the final portion of the visit.
  Now those of you in the parenting club might have been through this procedure and I'm sure that most of you have been given a printout of various images shown to you on the screen. Now at ORMC (Orlando Regional Medical Center) they had several innovations that I'd never seen, or even heard of. The first was that instead of getting a heat-transfer, like a bad 7-11 receipt, or a printout on photographic paper we were given a transparency, like an X-ray. Which I thought was very cool, because it looked all medical and stuff. The second unexpected innovation was that the technician/nurse could enter text into the image before it was processed.

Winter Goofball

   We were allowed to choose 9-3'x4' images (with text) that were printed out on a single sheet. I'm almost certain that my inadvertently humorous remark gave the nurse several ideas that enhanced her imagination when it came to choosing the text on those images. But, like any felon hearing the prison gate open, we just grabbed our 'personal effects' and bolted out of the building. I was in my own living room when I got my first real look at my son's first pictures. I almost dropped the sheet when I reached the final two and started laughing semi-hysterically. Most of the images either had no text at all, or your standard 'hi mom' sort of things, but the last two were a bit different. The first had my son's 'generative member' (that's right, his dick) bracketed by 7 or so carats (<) with the caption, 'I'M A BOY'.  I guess to make certain that Ellie wouldn't have to wonder what she was looking at. But the last one was aimed directly at me with a similar view of Dude's genitalia, fewer little arrows and the caption 'Boy Parts!!'. Sensitive to my wife's embarrassment, and having a gig to go to that evening, I immediately separated the 'Boy Parts!!' image, punched a hole in the top and placed it on my lanyard with that evening's backstage pass. All that evening, and for several weeks afterwards I explained to anyone who asked (and quite a few that didn't) that this was my 'Baby Pass', and that I couldn't get into the birth without it. I'm almost certain it was amusing the first 20 or so times I said it.
   I no longer work as a stage-whore (you pay, we play) so my backstage passes mostly just gather dust in the basement. None of them ever got me into anything as wonderful, strange, or wierd as my Dude-Pass.