Monday, June 6, 2011

Summertime, and the Living is Angsty

So here is where, if I thought I were actually writing for an audience, I might apologize for failing, yet again, to post more, as I promised. But since I'm pretty well writing for myself (or anyone who might Google "completely pitiful and rarely updated blogs"), skip all that noise.

It is summer, and I am home with Nate every day. And I am trying (and failing--notice a pattern?) to have some sort of schedule for us, and attempting to work on things with him, and I am feeling, once again, completely out of my element. Because my son has autism. And I don't know what will work best for him. And because no matter what I do, I will never feel that I'm doing enough, or that I'm doing the right things, and any future difficulties on his part will be irrefutably traced back to his mother being an absolute tool.

Granted, my son has high-functioning autism, and he's made great progress over the last several months. But I'm not so sure I've made progress. One of the crappiest parts of being the parent of an autistic child is that even though there are so many children with autism, we know next to nothing about it. And because there are so many children being diagnosed, and we're still suffering through a recession, services for these children are severely strained and/or non-existent in most places. Among the reams of things you read as a parent of an autistic child (okay, that's getting cumbersome--how about we say PAC instead?) is that early intervention is key, ABA (applied behavior analysis) is the most successful therapy, and that autistic children should receive 10-40 hours of ABA therapy a week. And most of that is to be done in-home. Which means a sliver of time with a trained ABA therapist, and the rest is to be covered by the PAC.

As if an autism diagnosis isn't stressful and bewildering enough, now you get to search for services. And you get to find out that there aren't many, for the most part. And that magical ABA therapy? Yeah, it might not be available in your area. Or if it is, it may cost you way more than you could possibly afford. Or, if you're like us, lower-cost services may be available...if you're willing to drive 2 hours or more each way. I could go on and on about this, really, but I'll spare you the details, because it's all been said, and much more eloquently/humorously/less stupidly on a million other sites. I'll just tell you what happens when I'm involved.

So! I say to myself, I can do this! Here's this handy book we were given when Nate was diagnosed. Let's read about ABA. We're two college-educated people (and here I am referring to myself and my husband, lest you think the diagnosis jump-started a dissociative identity disorder), and I even minored in psychology! We can figure this out!

On the surface, ABA is fairly simple. But factor in my near-crippling Mom anxiety, my reliance on People With Credentials to reassure me, my tendency to start off at way too high a level for my actual skill set, and my son's nearly-3-year-old attention span (notice how 3/4 of the problem is me-related. Yeah.), and you might as well stand me at a blackboard featuring an impossible mathematical equation, in front of an auditorium full of people, and tell me to solve for x. Oh, and I'm naked. And the audience is made up of mathematical geniuses who also model. And are superior parents. Who also dress well and probably can remember if they've brushed their teeth this morning.

At first, I made some overly-optimistic schedules. It became clear in the first day that those would have to undergo some serious revision. And the more I looked at that, and the more I read about autism, and the more calculating I did about how much time I needed to devote to working with my son, the more depressed and frustrated I got. How in the hell was I supposed to work with my son for up to 8 hours a day, plus do the regular chores that needed doing, cook dinner, and keep myself from resembling a feral cave-dweller? The answer was clear: I could never sleep again. Luckily, before I could follow through with that plan, two wonderful things happened: my son turned three, which meant that his services (which up to then was just speech therapy) would go through the school district, and I discovered that our particular school district had a preschool for children with developmental delays. It was like the heavens opened up and said "Randi, we have created for you a way to save you from yourself." We finished Nate's IEP the day before his birthday, and on the Monday after his 3rd birthday, Nate started going to preschool.

It was glorious. And he was improving. We could go to the park and encounter other children and not immediately have to leave. He was saying more words, and he loved his teacher and would do more for her than he did for us at home. And then my subconscious interrupted all this blissfulness with a tap on my shoulder, saying "uh, it's late April. And school lets out in May. And he'll be here all day, every day. And you have to do something with him." Oh, crap.

So I made another, less overly-optimistic schedule, which was still a failure. But he's still improving. I work with him on sharing and art and other things, and on Tuesday, he starts getting speech and occupational therapy for the month of June. And we're doing fine, really, and I have stopped feeling quite so insecure in all of it, because I have realized something: I'm not ever going to be a perfect parent. He's not ever going to be a perfect child. (Whatever either of those things means, anyway.) But I always let him know that he is loved and safe and it's okay to get things wrong, and how wildly proud his father and I are of everything he accomplishes, and for now, that seems to be enough. Enough to make him feel secure enough to make progress, in spite of his mother's staggering ineptitude.

I'm still going to try to have him potty-trained before school starts again, though. Because what's my life without a near-impossible project?


1 comment:

  1. well my darling, this much i can tell you: there's hardly a single thing here that every other parent doesn't struggle with, too - which isn't to say that your challenges aren't in many ways greater, but rather that your skills (or lack thereof) and your fears (even the irrational ones) and your shortcomings (be they real or imagined) are no worse for your autistic child than they'd be for any other kid. we're all fucking them up in one way or another, because we're human and we do that, but we're also all giving them so much more than it might feel like at any given moment, and it only shows up later when you think, hey, that awesome thing he's doing? *i* taught him that.

    my own kids are substandard because i didn't nurse them long or enthusiastically enough, because i didn't let them sleep in my bed, because i don't stay home with them, because i send them to shitty public schools, because i don't always take advantage of teachable moments, becuase fuck it dude sometimes i'm tired go play halo while i nap. and here you are dedicating the equivalent of a full-time work week to helping your guy along - on top of the 24 hours a day you spend just being his mom. trust me: from out here? you're doing better than great. and given a little time and a little space (and maybe one of those naps...) you'll see it yourself.

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