Daily Unexpected Fun, Ha! (#133)

At the end of Charlie’s home therapy session this afternoon, the therapist gave me a half-bowl of (no longer frozen) peas (frozen peas being something Charlie has been more motivated for than things like potato chips or popcorn–he has simply had too much of items like these). I was surprised. “I don’t like for him to become satiated,” she explained, and then went on to say how she tries to vary the reinforcement she uses, so that kids don’t tire of something too fast. CD songs, bounces on a big therapy ball, tickles, hugs, smiles, happy words of praise: The reinforcement for our home program is nothing fancy. What makes a simple “Charlie! What a great job!” or hearing a song (“Hot Potato,” the Barney song) so appealing is the enthusiastic and engaging delivery by a therapist.

Good reinforcement has often been the key to Charlie’s learning. He has been working on pre-reading skills–matching letters, words to words, words to pictures–learning how to use an activity schedule, trying out some new toys in his home program. I’m downstairs preparing for my Greek and Latin classes when he is working with the therapist and always keep an ear attuned to the second floor: “I want geen apple! Isss’ Chah-eee!” There is the occasional squealed “No!” and “All done!” but these are still music to my ears: When Charlie was in his original ABA program in Minnesota (he was two years old), he could not talk.

After six-plus years in the autism education trenches (and still a beginner, compared to parents and therapists who have been at it for decades), we have tried everything to “reinforce” Charlie. In St. Louis, there was a closet of toys of every type; in the past few years at school, various “sensory activities” have included rolling a ball on his back or letting him use an OT swing. Friends have stocked their houses with ball pits, trampolines, hundreds of DVD’s and CD’s, the moon pretty much. But any reinforcer is only so strong as the person delivering it. Time after time, a reinforcer has been used long after its effectiveness; Tara always used to remind us that you have to know Charlie wants to work for a reinforcer before you start to work on a program. “Otherwise, it’s not a reinforcer,” she reminded me. “You know what I mean?” And I would shake my head at the thousands of times Charlie had been told “You want to earn chips” or “Let’s work for Barney” long after he could have cared less.

It’s interesting that the most effective reinforcers for Charlie are those that rely on the person delivering it: Verbal praise. A loud and joyful YAY, like the best cheerleader you ever heard when the team has made the winning touchdown. Tickles (from the tickle bug). Dancing to those happy Wiggles songs or “Let Get Together” as sung by Hayley Mills. And the good therapist knows to change her reinforcers frequently, and to constantly assess if something is working.

I don’t think Charlie is the only kid with autism for whom things that he clearly likes–trips to the beach, French fries–can be sources of trouble. You might think, well, anyone could take Charlie to the beach and he would have a good time (versus having him sit at a desk and learn) or that a trip to McDonalds would bring out the best in him. Charlie certainly enjoys and asks for both a lot, but both have deeply entrenched associations and behaviors attached to them and sometimes these can turn a fun thing into a repetitive ritual.

I have called this the “balance of pain and pleasure” of autism. Charlie was at McDonald’s today with Jim and got “stuck” in the playground: Jim and I know that Charlie, like many children with autism, re-enacts scripts of videos and, when he is in the midst of one of these, interrupting him can make him very upset. But Jim knew it was time for them to go; disrupting Charlie’s video script provoked a noisy reaction that attracted some undue attention. Every autism parent has been through such a moment when they are in a public place and one’s child, well, erupts. My most memorable moment feeling as if I were the point person for the public face of autism was a few years ago on a train platform when a crowd of people backed away from me and Charlie flailing over a manhole cover. Parents have war stories about visits to department stores that ended in tears for everyone; of visits to “fun” places, like amusement parks and birthday parties, wherein one’s lovely child become an unhjappy mass of yelps and cries. There is even a book, The Child with Autism Goes to Town, that offers tips about taking one’s child out in public.

The hard part for us parents is that we have often been taking our child to McDonald’s or the movies or the mall or the beach as a happily anticipated reward. Autism parents go through a lot of what I’ll call Daily Unexpected Fun, Ha! (DUFH) for those moments when one’s child autism results in the aforementioned public meltdown, or when the plate with the just-asked for apple waffle goes flying, or when random strangers decide that they know what is ailing your child more than you and don’t hesitate to call your child “sweetie” and insert themselves. At such moments, what we autism parents feel is almost beyond description, we who cannot begin to express our deeper than deep love for our children, our terrible sorrow when we cannot seem to help them despite every effort and resource expended, and our awful pain when some stranger (however well-meaning) decides that she knows best. We parents get a lot of blame and we do our best to keep our eyes focued on what we need to, doing what is best for our beloved children.

We have been thinking about all of these things much of late in terms of Charlie’s education. He has been making good progress in his home program and at his private verbal behavior sessions. He had been talking on and on about “sushi” yesterday but, keeping the “satiation” point our therapist brought up in mind, I made him a different dinner, brown rice with a hamburger and vegetables. Then we went to Barnes and Nobles where he looked for a while at the Barney DVD’s then wanted “black car,” and then Pathmark for more frozen waffles. He needed a few taps on the shoulder, as he was running some script about garage doors (I could tell by the noises he was making). At home, he leapt for the couch, his blanket, and the guitar which, as Jim told me, he had been carrying around all day and strumming. Everytime he puts his long fingers to it, the sound is different, reverberating, lovely, an original music I’m just learning how to listen to.

This post is dedicated to the Best Dad Ever, my best friend Jim.


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