"I'm sorry we're meeting under these circumstances."
The mother of an autistic boy a few years older than Charlie said that to me back in 1999. She is the friend of a friend, very active, very informed; we were encouraged to call her. The sentence above was the first thing she said to me over the phone as I stood in the narrow room to the side of the front door that was Jim's study in our second-story apartment in St. Paul, where we lived at that time.
I don't remember what I mumbled. I said we were thinking of starting intensive ABA for Charlie and had started him on the gluten-free casein-free diet. She asked if I thought Charlie had any reaction to his vaccines. Jim and I were certainly aware of this---Andrew Wakefield's Lancet paper claiming a link between the MMR vaccine and autism had been published in February of 1998---but, wrack my thoughts as I might, my answer to her was "No."
"Charlie's always been Charlie," I said. I mentioned his 2-month-old baby photo in which he is tilting his head at a certain angle, his eyeballs looking as if they have slid all the way into the left corners of his eyes. I talked about how he used, when in utero and after breastfeeding while a baby, to arch his back just the same way he now did in the midst of his tantrums (which had become fierce) and when he was settling down in his bed (we had just gotten him out of his crib) to sleep. The other mother said something to the effect that yes, there had always been something different about her son, too.
Her initial statement has stayed with me over the years. "I'm sorry we're meeting under these circumstances"---that is, that we're only meeting because our lives have been affected by this dreadful thing that happened to us: Autism.
No, I think more than ever now. Thank goodness we're meeting, thank goodness we have met, and what do the circumstances matter?----The good thing is that, there are so many others to meet, who are autistic themselves, who are raising an autistic child and learning from and loving her or him, who have grown up with an autistic sibling, who teach autistic children. Maybe we do not agree about certain issues (like this one), but autism is a part of our lives, often the biggest part. We're the real (pardon the awkwardness of the expression) "Autism Every Day-ers," whose lives are threaded through with "the stress, the hope, the determination and, most of all, the love that is Autismland," as my blog-friend and fellow autism mom Mom-NOS wrote today.
Mom-NOS kindly quoted me being quoted in the New York Times today in an article about the new, longer version of the Autism Every Day video put out by Autism Speaks. I have yet to see the new version of the film (it has not yet been made available) and I am curious as to what has been added or altered to the original, shorter version with its "tone of hopelessness."
"Not every family has that perspective; it's only one part of a spectrum of views on what it is to live with autism" was another comment I made to the reporter and here is what Charlie, Jim and I did on yet another day in Autismland.
The melatonin has been working. Actually, I cannot believe that I just wrote that sentence: Charlie has had so many difficulties going to sleep for the past year plus, and he tends to have such unexpected reactions to medicine (I once gave him a dose of Benadryl and he became completely wide awake and very hyper), that Jim and I figured we would probably have to ask the neurologist about something "stronger." It has been some two weeks since we started giving Charlie melatonin around 9.30pm and--still quite fluff flew). He ran circles around the house and then lazed around, listening to me read him a Curious George book (although a casual observer might wonder about this, as Charlie is not looking at the words or pictures). Then he curled up under the covers of our bed and fell asleep.
Prior to the melatonin, if Charlie took even a half-hour nap during the day, he could not sleep until midnight at the earliest; we did everything we could to keep him awake when he showed signs of falling asleep. The result was, he would be tired and groggy and not in the best of moods for the rest of the day; if he did end up falling asleep, he seemed almost guaranteed to have a difficult day at school, as he would be extra-groggy in the morning.
"Let him be," I said to myself today. Charlie woke after an hour and a half, rolled over on his back and smiled, and hopped out to put on his shoes to go for a walk in a park with Jim. They came back just in time for Charlie's piano lesson; Charlie's teacher and I watched, and listened, with shared pleasure as he moved all of his fingers to play a short tune, all on his own. Before dinner, Jim and Charlie went on a walk to the train station---"one of our best walks ever," Jim proclaimed: Charlie wanted to see a train come but the wait would have been too long in the cold. Charlie ran out to get "Mexicann fwood" with Jim. "Mahm. Mom." Charlie tapped my right arm and gave me a long look with his big brown eyes and I held just the edge of his plate full of his rice, beans, salsa, and guacamole (which he ate in the reverse order). He bounced up and down on the couch while watching the Bears defeat the Saints. He called out the name of one of his aides at school and grinned when I mentioned the names of the others. He rolled in the fluff humming the tune to Sugarcane Harris's "Keep On Driving." Just before 10pm, he lay down on his bed and requested "Bankett," which I wrapped around him. "Goo' night."
Too all of you who are reading this, I'm very, very glad to have met you.