"It was great!" That has been Jim's and my response when asked "how was the summer?". The usual highlights of ocean, bike rides "with Charlie leading the way," many days with our peaceful easy-feeling boy. Under his breath, Jim says to me, "And he only had that trouble with his head the one time in August, right?"
So we were a bit bemused but grave while attending a workshop on crisis management with an autism consultant tonight. We joined the therapists in trying out how to hold Charlie and support him should he have The Big One, a moment of such heightened communication frustration and anxiety that the house rocks. And Jim and I were both quick to say, it's not like "him using his head" happens with extreme frequency. Earlier this year, Charlie's head-banging seemed to be holding us, and him, hostage. If I told him "use your fork" he might swipe his plate to the floor or bring his head down with a crash on the table, or both. If I moved his favorite photo of him and Jim on the merry-go-round from its precise position on the computer keyboard, the whole computer might have been gone flying across the room. Even the car--even being in motion--was futile, when Charlie erupted into tantrums while Jim or I were driving him, alone and helpless when he hit his head on the window.
In other words, I don't keep dry ice packs in the freezer just to keep the Capri Suns cold in Charlie's lunchbox--Jim and I know the routine of "you stay with him, you go get the ice" and then the renewed struggle to press the cold pack on Charlie's bruised forehead. More than fortunately, this routine has not been the norm for the past month. "He really is growing up," Jim has been saying. "He knows he's not supposed to do it," I say. "No more head bang!" Charlie chirps.
It would be unrealistic for me to say, I hope I never have to hang onto Charlie in a basket hold again. But with autism, you never can be too prepared. It is true, at the terrible time of diagnosis, you are anything but prepared. You are a wreck, crying your eyes out day in and day out and trying to keep on smilin' and get your little boy to please, please, play with this farm set without lining up the cow horse pig and sheep in a straight line while humming. You cannot be prepared for the introduction of this word, "autism," into your vocabulary. It is a shock whose tremors continue to resonate.
But, as Jim and I talked with our new therapy team tonight--a fifth generation of Stella's, Arielah's, Tara's, Beth's, and Kristy's--we've learned, we've got to be ready when that Big One strikes. We can't let ourselves or Charlie say that a day is good because there was no head-bang. Charlie needs to learn how to read and write and to take joy in these pursuits as he does when he swims and bikes. Charlie sitting at his desk working on identifying words and doing homework must be the norm we strive for, though we'll be sure to be ready when some tough moment comes and we have to hang on to him. We must let Charlie know, we're prepared both to keep you from hurting yourself, and to cheer you on when you read a page, and another page, in a book, and especially the one that was written for Charlie.