My not-so-voluntary career as a researcher started 22 years ago when Dylan was born and diagnosed with Tuberous Sclerosis. The internet wasn't readily available to the general public, so research meant the library! In Phoenix, that would've been the old library at Central & McDowell (what is currently part of the Phoenix Art Museum).
All my life, I'd preferred to be outside in the great outdoors , so even though I was capable of efficient reading, it wasn't what I chose to do. As a consequence, I hadn't spent much time inside a library. I read what I had to read (textbooks) to get through school, but I much preferred 'doing' to reading. The old Phoenix Library still had the card catalog system in place and I was looking for anything related to tuberous sclerosis. There wasn't a lot of information out there in the mid 1990's and what was available was old and terribly depressing!
The trip wasn't for naught because I came across a book written by Temple Grandin that my aunt had recommended. Travelling through the catacombs with a SID baby was enough to send us both out of the place screaming, but we DID make it out of the library, and with a copy of Temple's Thinking in Pictures, to boot!
Self talk: Don't give up!! Perseverance. Courage. Determination. No other option.
We knew early on that Dylan had sensory processing issues. His first OT, Phyllis, started a brushing and deep pressure regimen with him in therapy. She taught me to do it and told me to do it right after his bath and just before bed. The first time I tried it, he fell asleep as I was doing it and slept for four hours straight!
As I was reading more about Temple Grandin, I read about a 'squeeze machine' that she developed for her own personal use. How cool that she could do it herself! There's one at the Children's Center for Neurodevelopmental Studies in Glendale. When I read about it, it made total sense to me, especially because I'd seen first hand how Dylan responded to the deep pressure and brushing. It still amazes me that those methods aren't used more often across settings: therapy, home, school.
I had lots more to do, to learn, to see. We would see Phyllis, Dylan's OT, again in the school setting and, yet again as a 1:1 therapist. The year she worked for our local school district, she shared a booklet with me titled How Does Your Engine Run. This added another piece to the sensory puzzle. Learning the importance of self regulation for children with sensory processing issues and understanding the self piece of that really opened up new opportunities for Dylan and brought a sense of peace to our home life. We looked at what calmed him ~ the silky side of his heavy blankie, and talked to him about crawling under it himself when he was feeling out of control. Initially, we would take him to it when he was out of control, but eventually, we found that he would seek it out himself.
As a side note, Ms. Grandin spent part of her young life in Arizona when she was 'living the life' from the inside out. Because she's so articulate and able to describe what's going on with her brain and her body as it relates to autism, and because she's willing to SHARE what she knows, her contributions to the field are priceless. If you'd like to know a little more about her life, Claire Danes portrays Temple in Temple Grandin.
We still have a long way to go to facilitate positive life experiences for children on the spectrum ~ to help them to become valued, participating members of society. And frankly, the same goes for children with special needs in general. In the past 30 years, many good people ~ often anonymous, unsung heros ~ have been thinking outside the box to help those with what I call "diffabilities". They meet the criteria that Temple Grandin lays out to describe the true meaning of life, "...the true meaning of life is if you do something that makes real change for somebody else or something, that's what really matters." They were and are making a real difference.
I can't help but think how different the world would be if Temple had chosen political science instead of animal science.
~ D
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