This post is about the difficulties of writing about something very difficult, self-injurious behavior and, specifically, head-banging. Things which I, prior to having lived through many things with Charlie, would have said were tantamount to the end of the world as we knew it.
Being honest about the difficult things that happen in our lives has always been part of my blogging since I started writing about Charlie online in June of 2005. I used the word "bittersweet" in yesterday's post and maybe that's the word that best characterizes my blogging about Charlie, in that there are lots of tough moments when, indeed, SIBs occur, and there are lots of happy, lovely times when it just feels good to be alive, going through the daily journey of our lives together. But somehow, it often seems that "honest writing about autism" means emphasizing what's difficult about life with autism and one comes under suspicion of wearing rose-colored glasses if one is "too positive and upbeat."
Charlie was a toddler when we first saw him hit his head. Observations by numerous teachers, therapists, behaviorists, and others have led to a conclusion Jim and I have reached ourselves: Charlie does this for a number of reasons and helping him not to do it has, in his case, called for: ABA, medication, lots of physical and aerobic exercise, being watchful about Charlie's diet, some biomedical remedies (when Charlie was younger), picture schedules and activity schedules to help him through transitions and to show him what to expect throughout the day, teaching him to communicate and express himself (through sign language and speech, primarily), attentiveness to his sensory sensitivities (noise, different textures and smells), leading him through and away from whatever he might be perseverating on (again and again we've seen the pattern of Charlie becoming very, rigidly, obsessive-compulsive about something and then head-banging). There have been long periods (a couple of years) when head-banging has been minimal. Entering adolescence has seemed to lead to an increase in head-banging, unfortunately; coupled with Charlie being adult-size, it is a whole different game to handle SIBs and other "challenging behaviors" of all sorts.
Too often, Jim and I find that, at IEP and other meetings about Charlie, SIBs and "challenging behaviors" get mostly talked about. The result is that some 90% of our attention gets focused on something Charlie spends a very small percentage of his day doing. Of course, the severity of SIBs means that there has to be a lot of talk about it, to teach Charlie other ways to handle sensory overloads and to express himself. But somehow in writing about autistic children, there often seems to be an overwhelming tendency to go on and on about the 4% of the day that was difficult, and to skim over the remaining 96%. Certainly there's a huge need to talk about that 4 or whatever percent: Most children don't bang their heads into walls on a regular basis and most people are neither able nor willing to talk about this sort of thing.
It would be easy for me to fill up post after post about that 4%. But even on the day when Charlie (sigh) broke the window at the doctors' office with the back of his head and the EMTs appeared, he spent the rest of the day waiting patiently for hours in a crowded ER waiting room and let a strange doctor examine his swollen mouth. It would be dishonest of me to say that that Saturday in December was a totally awful day because---while it had some low moments, you can be sure---it had plenty of good moments. All of our days with Charlie do.
I've also learned a few things from blogging for almost five years about autism and Charlie, both on this personal blog and also in more public venues like Autism Vox and the autism blog at Change.org. Charlie is a lot more than his most challenging moments and I think it's important for his dignity and his privacy, and that of our family, to represent the reality of our life not as segment upon segment of "autism nightmare without end," but as beach trips and bike rides and writing lessons and sweet silly moments. Readers can say whatever they wish, but I am Charlie's mother. After one Autism Vox post led to comments from someone asking what was wrong with me, hadn't I tried giving my child Vitamin C to stop the SIBs, I realized that I didn't care to have my child and his struggles discussed so casually.
So yes, "neurological storms" can be real intense---real bad---around here. There's a bump on Charlie's forehead that won't go away, the doctors told us. There are a number of holes in the walls that Jim has been patching and painting. We're only using plastic dishes and cups since those don't break when they get thrown. The blue couch that Charlie likes to sit on is draped in blankets and pillows and soft things, just in case. We have to break up his video watching and CD-listening (in the car), lest he become over-stimulated and start knocking his head around. We're wary of motorcycles and police sirens, crying babies, shouting and coughing, and high-pitched voices.
One thing I have learned from all this is that often the most obvious solutions just treat the problem people see, without addressing the deeper causes. Thus did the school district (and their lawyers) insist that Charlie wear a helmet. But that blue plastic apparatus has been the equivalent of a putting a band-aid on something serious that requires much more examination. The "protection" offered by the helmet was limited at best. As Jim and I predicted, Charlie banged his head harder while wearing the helmet (which makes for really big holes in the walls). He probably started banging more while wearing the helmet (in part due to the discomfort of the thing?).
The real solution (because you have to hope there is one) has been to think of head-banging in terms of sensory overloads, communication limitations, anxiety, frustration, and much much more; as something very complicated, that needs to be addressed in manifold ways, and with patience and understanding. So far, this seems to be happening for Charlie at his new school. The teachers have started fading the helmet off: Charlie is not wearing it now during lunchtime. They don't plop it on his head from the moment they see him, as his teacher and aides did at his former public middle school, but talk with Charlie as they walk to the classroom.
And as for the honesty and the reality issues. You can get a broader view about what it's been like, and what it's like, to raise Charlie, over on Jim's blog, The Irish Waterfront starting with this post All Along the Jersey Shore and, too, In Walked Charlie. Jim started the blog when his book came out last August and I'm very excited that he's decided to do more writing about life with Charlie and our life.
Tuesday started at about 4.15am for all of us, as that's when Charlie got up and got dressed. He poked around in the kitchen while I made coffee (may as well), watched some things on my computer, and then asked for "bedtime" and took himself back to bed---a new development, as he's previously seemed to think, once he's up, he's up, and he can't go back to bed till the evening. Charlie slept until 7.30am and had a good day at school, and an energetic walk with Jim. He helped himself to a pack of sushi and asked to watch YouTube on my laptop which almost got, um, decommissioned, as he suddenly got sick all over the place.
Jim helped Charlie get cleaned up while I shook out the slipcovers and blankets. Poor Charlie, looking rather gray, conked out on the stripped down couch for a couple of hours. He was edgy on waking, understandably, and looked eager when we mentioned getting into the white car. As Jim drove, Charlie got very insistent about listening to one of the same three CDs we've been listening to over, over and, yes, dangerously ad nauseam. He just kept handing me one of those three until I asked him for the CD case. I found an old REM CD and put it in and from the moment he heard the first bars of the appropriately titled "Drive," Charlie listened with big bright eyes. I impressed Jim by singing along to all the songs and we agreed, got to get more REM for Charlie, most certainly "It's the End of the World As We Know It."
And yes, we feel fine.