O.k., so after my Jenny McCarthy and Autism Speaks blog post I have gotten emails and posts and I think I need to spend more time talking about the need for an inclusion movement. Let me step back and tell how we got here — the autism universe.
I was eight months pregnant with Dylan (number 2 child) and Tristan had no communication; he liked to play in the living room facing the window lining up his cars or animals. Peter and I thought that Tristan had an independence streak and all our friends marveled at his ability to "play" by himself. While I painted all the rooms of our old colonial, Tristan lined up his toys and flipped the pages of his books.
Honestly, we had no clue there was anything wrong until Peter's grandfather, a doctor, and all his doctor friends came to Vermont to play golf. One of Grandpa Doc's friends was a pediatrician and as we sat at the bar of Peter's Dad's restaurant, worrying about Tristan's small toes that curled-in, we happened to mention that Tristan talks in gibberish and how we thought he would just start speaking whole sentences when he finally DECIDED to talk. He looked at us, raised his drink and in his Indian accent said "If Tristan doesn't begin speaking soon, you may want to get him evaluated."
Before I fell off my chair, I thought evaluated for what — he is an intelligent little boy who is well beyond single word sentences because he has the sentence structure all figured out. After dinner we left and on Monday morning I called our pediatrician and scheduled an appointment. Doctor Sara said, "Bring Tristan's favorite toys and let's play and then go from there."
Doctor Sara, Tristan, and I sat on the floor in her office, while Tristan constructed a 100 piece puzzle without any help and only when Doctor Sara said say, "whale" did Tristan look up, but not at us, but at the photo of a whale on the wall. After the hour long, lunchtime consult, where I was asked if Tristan pointed (no) or if he tried to communicate (Peter and I thought he was deaf because he never responded to his name) Doctor Sara referred us to the Vermont Child Development Clinic.
Often I have wondered if Sara thought she had missed something; see we were never focused on Tristan's development — he walked and climbed early. We were worried about Tristan's health. From six weeks old Tristan's G.I. issues increasing became more intense with days of no sleep and screaming pain from his intestines (I could feel stool and gas at a very young age). Doctor Sara had Tristan tested for all sorts of diseases. We spent more time at the hospital in Tristan's first year of life than at the playground.
After Tristan was diagnosed with autism — full autism — not PDD-NOS or Asperger Syndrome, I asked Dr. Joe (Sara left Vermont and stays home with her three children) for Tristan's vaccine schedule and all his records. More about the connection tomorrow...