Saturday, August 29, 2009

Engaging Autism

"Let's wait and see." How many times has a concerned parent heard this in response to their questions about their child's developmental progress or lack thereof? It is absolutely infuriating to me, and I'm sure I take it too personally. But so much time is wasted sitting on our thumbs, going to weekly speech therapy appointments and hoping we're doing as much for our kiddo as possible. I expressed my concerns to a developmental pediatrician that I felt Katie had autistic characteristics. She was 2, I was told "It could be her developmental delays. Let's wait and see. We can't diagnose her this young." I knew better, but I relented. We continued the weekly speech therapy appointments and of course physical and occupational therapy twice a week. Two years later I asked another developmental pediatrician if she could see my concerns with Katie's ability (or lack thereof) to relate and communicate. She took a moments look at Katie and said "Yeah, I can see how she would be on the spectrum." Meanwhile, her minimal therapies over the last 2 years had done little to address her deficits in relating and communicating. The emotional connection stuff. Really, to me, the IMPORTANT stuff. Who cares if she ever runs a mile!? I'd like to hear what her favorite flavor of ice cream is and why or have her tell me stories.

So when I came across the DIR-Model of therapy called "Floortime"... I was elated and furious. I was reading a book called "The Boy Who Loved Windows" and saw a lot of Katie in his behavior even as an infant. I read about the frazzled mother who tried desperately to gain her son's love and attention. I remembered writing in her baby book when she learned to smile that it was "one per person per day"... And how she would stare at ceiling fans and light bulbs. I realized that we had wasted 2 precious years which could have been better spent doing the Floortime program and addressing her deficits. I was so disheartened. I made folders for each of Katie's specialists so that when they see a child with these progressing problems, they can offer the parents something productive to do instead of simply waiting. Floortime isn't a magic bullet by any means, and if Katie really does have Rett's Syndrome, I don't know how much communication she will ever be capable of. But the cool thing is that every child can benefit from the warmth and pleasurable interaction with their caregiver, regardless of the result. And even if your child wakes up in the morning and jumps ahead 2 developmental milestones, Floortime is still good for a typically developing child as well!

In fact, in reading the new book by Dr. Stanley Greenspan, "Engaging Autism", I am amazed and in awe of the way that children's minds typically develop. I will use the Floortime approach again, with any additional children I may hope to have regardless of their developmental status. I have yet to read anything I disagree with, although it is very enlightening to read the ways that children learn and the ways adults may or may not help them with this process. I pointed out to my boyfriend, Shayne, that it's amazing some children progress at all with the kinds of parents I observe.... But I digress. I do try not to judge, and I know that everyone has bad days, is stressed, and just generally fails to meet even their own expectations as being a parent goes. That's my disclaimer. 'Nuf said.

At any rate, I wish that this book was required reading for all people in any field specializing with children. How many people I have bumped into that have never heard of Floortime, or who say "Oh yeah, I love that!" when it's clear they have no idea of what it is all about. I wish they would tell every parent of a potentially struggling child before things feel ridiculously hopeless and out of hand.

My desire is that professionals stop treating the symptoms and start treating each individual child at their deepest level of deficiency. With the amount of energy it takes to be a good parent, let alone the parent of a child with special needs..... wouldn't you like to know that your energy is spent in the best possible direction? I would... So I'm jumping into this--headfirst.

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