What do you say to a school bus driver who asks if your 3-year-old child is autistic?
She was smiling when she asked. Nobody else ~ doctors, teachers, therapists ~ had ever suggested autism. He already had a diagnosis, Tuberous Sclerosis. So, that's what I told her. Somewhere in the file cabinet in my brain I filed away 'autism'. That file was the 'elephant in my brain'. I added information to it, but I didn't dare take it out and open it up. I couldn't examine it up close because that would be admitting to myself that I actually thought that bus driver was on to something. And she wasn't the only one.
When Dylan was in second grade, he got to sit in the back of his classroom and draw pictures for most of the day. At that point in time, he perseverated on birthdays. So, he drew many pictures of birthday cakes. Creative, yes; beautiful, YES, but not so academically challenging. Towards the end of the year, we wound up in mediation with the school district. The result was to include preferential seating in his IEP (among other things), so the teacher could be close and keep him on task. This was early April. By the middle of May, he was still sitting in the back of the classroom with the other special education students. WOW!
By now, he was almost seven and still almost non-verbal, though he was pretty good with the sign language we'd learned together. But it was time to pull out that file again, to look at and process everything we'd done with Dylan for the past six years. What worked, what didn't, and where we'd go from here. Now, I had to look at autism. I found SARRC, the Southwest Autism Research and Resource Center and signed up to take a class there. Baby steps. The facilitator just happened to be the classroom aid attached to a couple of the other special education students in Dylan's class. She asked me how in the world I'd dealt with Dylan's autism for all these years without help. Double WOW! I'd just been following his lead and doing what he showed me he needed help with, but now, it really was time to get some professional evaluations to help figure out where we were going.
I knew where we'd come from, and thankfully, over the years, we'd had a few therapists who were 'out of the box' thinkers and excellent practitioners who looked at the child rather than the diagnosis. One particular Occupational Therapist comes to mind, Phyllis. Not only was she really good with Dylan and the rest of her "kids", she knew about sensory integration dysfunction (SID).
I didn't know it then, but SID was common in kids on the spectrum. When she'd see Dylan, the first order of business was some deep pressure into his joints. This process started from the top down, literally. Then came the 'brushing', using a rectangular, white plastic brush just like the ones doctors use to scrub their hands prior to surgery. I've saved one of those brushes to remind me of just how far we've come, and how much progress Dylan has made in his life.
This tactile pressure calmed him and allowed him to focus on the work he'd be doing in therapy ~ which meant he got a lot more out of the therapy session. Dylan responded so beautifully to this protocol, I asked if I could learn to do it to help him relax before bedtime.
I was a willing student, and Phyllis was a willing teacher. Dylan was the beneficiary! I've often wondered if his early school years would've been more productive if the OT's at school had known about and used deep pressure and brushing.
Let's go back a few years to put the results of the deep pressure/brushing into context. From the day he was born, he never SLEPT like other babies. In fact, he hardly slept at all, which meant I hardly slept at all. Talk about sticking your finger in a light socket ~ or feeling like doing it, anyway. That's how most days felt for me! Can't imagine what was going on in that little brain to make it stay "on" all the time. To be able to use the deep pressure and brushing to calm him after bath time and just before bed was a Godsend. This was an every night routine that we both looked forward to ~ we both got to SLEEP afterwards!
In writing this, I think of the Zombie books Dane is reading right now. That would've totally been what our house looked like back then. Zombies!
A little more sleep meant a little more study time for me, and lots of smart people were working hard to come up with strategies to help kids like Dylan. The gratitude I feel to these early advocates is immeasurable, especially Temple Grandin, whose name is now synonymous with autism, and Alfred Tomatis. Temple figured out that she needed 'deep pressure' and devised a machine to help her out with that, and Tomatis developed a method of auditory integration training that helped Dylan move from single word expression (cookie) to a 14-word-sentence over the summer after second grade! More on that and another social story dilemma later!
To all of Dylan's 'out of the box' therapists ~ THANK YOU!
~ D
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