"So," said the optometrist as she opened Charlie's file. I had called for an appointment about two weeks ago, concerned about Charlie squeezing his left eye. "You haven't been here for a year," the optometrist said and so, after picking up a giggly-grinning Charlie who walked to the school office with one of his favorite school instructors, off to see "Docktour!" we went.
"How's he doing?" asked the optometrist.
"Really good," I said. "Turn on," said Charlie, holding up a quite battered Barney video that I am quite sure he had been thinking about ever since hearing he was going to see the optometrist last night. Another child had been holding onto this video in the waiting room and tried to secretly shove it into his mother's bag as she talked to the optometrist. Charlie raced in and then out the door and down the concrete walkway, then back in and out: The optometrist used to have a therapy dog (she was helping to train Melody) in her office; Charlie had always liked her (the dog was in a cage) but with his current dog-fear, I suspect the possibility of having to get close to any dog weighed heavily on him, and kept him running.
"Melody hasn't been in this office for two years," the optometrist frowned. Then she got back to work at her desk, me across from her, Charlie in the exam chair. "Now last time----17 headbangs in one day."
"Turn on," said Charlie. I explained Charlie's educational odyssey of the past year----two different public school districts, a month home last November because school was no longer a place he could be safe, his private autism school that closed in June. "I want Barney," said Charlie and I went to get one of the stuffed purple dinosaurs he was eyeing. He held a big and a little Barney as the doctor tested his vision with a patch over each eye (Charlie sat still so that it stayed on and did not pull it off as he has every time before). She shone lights into his eyes so she could look at his retinas and I placed one hand very, very lightly on the back of his head to keep his chin from moving. She put in drops to dilate his pupils. Charlie watched five minutes of Barney's Songs (this is a really old video---as in the kids must be from the original Backyard Gang----there was a song about "sandwiches around the world"). She noted that Charlie's vision is 20/20 and that he is still somewhat farsighted (125).
Charlie used to wear prism lenses until, two years ago, he started to spend more time bending them in half and breaking them; the doctor and I talked about trying the glasses again, just for reading: Charlie's right eye does not converge , does not move inward in conjunction with his left eye to focus on something. The prism lenses help with the convergence and the doctor suggested just trying the glasses when Charlie is working on his reading programs.
"All done." Charlie handed the big Barney back to me and I put him back on the same corner shelf that he has always been in the optometrist's exam room (the dog used to be below). Charlie called for his ABA therapist and ran out to the waiting room. "I have to pay the bill," I said. "Payda bill," said Charlie and stood and looked at me. I wrote out a cheque and then gave the optometrist a flyer for the October 27th Autism and Advocacy conference.
"What's it about?" she asked.
I paused. I said, thinking as I spoke,
"It's about advocating for autism in the community---in schools and churches and everywhere----about thinking about what kind of changes can make things better-suited for autistic kids and adults as they are."
"Oh, like all the talk for a cure-----but not about a cure...."
I paused again and said,
"It's about how we can change ourselves to meet autistic kids and persons where they are."
And where that is, I thought as we drove home (Charlie---squinting from his dilated pupils ---with the blue hood of his sweatshirt pulled over his eyes), takes some hard looking---some real discernement---to truly see.
Thanks always to Charlie for the gift of clearer vision.
Charlie's Education Begins
May 1999. Charlie starts to receive 2 hours of instruction from a special education teacher, 1 hour of speech therapy, and 1 hour of OT, all from the St. Paul school district. These continue through the summer. Charlie does not sit long enough to complete activities; does not follow the teacher and therapists doing activities (requiring extensive hand-over-hand prompting); does not appear to understand any verbal requests or phrases; does not talk.
July 22, 1999. The day that Charlie is diagnosed with autism is one of the hottest days of an unusually hot summer in Minnesota (it is so hot the carpet in our second-floor duplex is hot and the air never cools).
Early August 1999. We drive out to New Jersey for vacation at the beach. On this 2 1/2 day trip, we listen to two tapes ("Barney's Favorite Songs" and "Celtic Tides") over and over and over. We decide to start a home ABA program run by the Lovaas agency in the Twin Cities. On vacation, Charlie's godparents arrive to hear him screaming and running up and down the porch and announce they cannot stay. Jim's best friend Mike arrives at the very end of the trip. Charlie builds elaborate block structures and ignores every effort of Mike (a father of two teenagers) to get him to play (Mike later tells me he went home and talked to his mother and cried).
Late August 1999. We drive back to Minnesota, again with the two tapes playing constantly. We make flyers to find therapists for our yet-to-happen home program. Jim hangs them up at the University of St. Thomas, Macalester College, and the University of Minnesota. We meet our first lead therapist. Charlie plays with the cups and a toy laptop computer and builds elaborate block structures. Tantrums and general unhappiness.
September 1999. Five college students and two graduate students call in response to our flyer. They all come to meet Charlie, who hits his head on the floor when one sits down next to him. Four college students and one graduate student are hired.
To be continued......