Did you ask about------? What did the doctor say? How does his forehead feel? What if he's still coughing on Sunday? Why did the pharmacist say not to take that cough medication because of the Risperdal and now another one says he can? What did the doctor say he has? When are we supposed to call? Why is he still doing-----?
Jim and I have been peppering each other with these sorts of questions ever since Charlie's forehead was burning hot last Tuesday evening. A doctor diagnosed him with a virus on Wednesday and prescribed a steroid to take for two days. Aside from his two visits to my college classes, the fries-throw-ending meal of last night, and a few trips to Walgreens for medicine and sodas, Charlie has passed most of the week in his bed or on the couch, looking around from hollowed out eyes.
Charlie has had a cough, runny nose, sneezing, on and off fevers, no appetite, lethargy, extreme grogginess, no stimming (because of no extra energy, I think). While he certainly knows to identify the parts of his body, questions like "does this or that hurt?" or "does your head feel stuffy?" or "does that medicine make you feel dizzy?" receive no verbal answers. I know Charlie knows what we are asking him though he does not have the words to tell us so directly.
And so we watch his behavior. Charlie got up at 8am and climbed into our bed, then slowly clomped downstairs and told me "chicken!". "For breakfast?" "Yes, chicken." I stir-fried him a chicken breast and also made a pot "white rice," as he requested. Charlie ate about half the chicken and all the rice, somberly. Then he curled up on his dad's knees on the blue couch and fell asleep for a few hours during which Jim and I nervously asked each other: "What if he is sick on Monday?" "I have to teach," I said. "I have a meeting with an editor," said Jim who thought about it and made plans to reschedule.
Ever since Charlie started at his new school in early December, Jim and I have been able to concentrate on those "other" aspects of our lives that get neglected in the need to take care of Our Number One Priority Now and Forever, Charlie. Jim has to finish his book manuscript on the New York/New Jersey waterfront that he has been writing for the entire span of Charlie's life, and that he has had frequently had to stop to advocate for Charlie's education and to drive us all to the latest neurologist appointment. I have been slowly starting to research disability in the ancient world of the Greeks and Romans, as well as continuing to read as much as I can about autism research, ABA, IDEA, language, and more.
You can never know enough. Even when the reports from school and the therapists are "he's doing great!" we have learned, you cannot stop asking questions.
Mom-NOS reflected on a recent meeting with her child's school team and noted how the school team has neither all the answers nor "all the questions." For us Autismland parents, these words ring more than true. We have to be the autism experts. We have to read all the books, keep track on the latest therapies (whether we might believe in them or not). We have to take the big gulp and say, "Yes, he's doing great, but he could be doing better. Other 8 1/2 year old boys can dribble a ball and jump rope; Charlie can't. So he needs PT." Or: "Third-graders can read and write a few-sentence length story; Charlie can't. So he needs services to teach him to do this."
Such statements can, of course, lead to disagreements across the table but, even as we acknowledge Charlie's unmild autism diagnosis and his severe (SIB) behavior, we have Major Expectations and we expect not only answers. We expect demonstrable results that are as specific as those his teacher sends home every week, beyond the pleasingly vague "he is doing soooooo good!". It might be easier to settle for this and turn my attention to researching scholarly articles on Sophocles rather than on strategies to teach autistic kids to speak clearly. I wish for harmony and peace in Charlie and have only found these by asking so many questions of everyone else that I not only squeak like the proverbial wheel. I smell like axle grease if not gasoline.
And grape-flavored cough syrup. Today I went to both Walgreens and CVS and read every label on every box of Child's or Junior Tylenol, Pediacare, Benadryl, Triaminic, Motrin, product. I asked the pharmacist: "My son takes Risperdal, can he take this?" Charlie woke up red-cheeked and hot and Jim and I started to wonder if it was time to ask my parents to fly out from California.
But one of the over-the-counter meds or the diet Sprite or some mysterious healing force finally kicked in and, for the first time in three days, Charlie started to smile and giggle. "I want brown noodles, yes!" Cough. He ate most of his dinner and, after a hot shower, smiled delightedly as I toweled him off and wiped his leaky nose. Charlie squeezed my arms tightly. He settled on the battered blue and white couch below the delirium-induced-kicking dent he had made in the wall earlier this week. The three of us watched a documentary about grizzly bears until a weary Charlie was piggybacked to bed. "School Monday?" asked Jim. "School, yes" said Charlie.
No question in Charlie about that.
It's for Jim and me to keep on asking the hard questions, of ourselves, of those who educate him, and of Charlie, who has the potential to one day exceed all expectations.