There go the swimming lessons
3 Seconds

Door closes, door opens

Bike rides make us happy (specially 15 mile ones)

It could be said that the saying of 'one door closes and another opens' is something of a mantra for the endless work of finding and obtaining services, school placements, job placements (because those are coming up, right?), therapies, and more for chidren with disabilities.

I'm being philosophical, you might say, with all this door business in light of the end of swimming lessons (this latest round at least). I won't keep, ah, perseverating on the topic except to say that a related metaphor to the whole 'door closes/door opens' one is of light and dark, of good and bad, of sublimely lovely moments following some fairly awful ones. Highs following lows and then lows again; the taste of bittersweet.

It's a bit a bipolar existence, perhaps, this life raising a child with disabilities and differences beyond the usual. 

I've had 'bipolar' on my mind as we've noted Charlie having some aspects of this, including extremely rapid mood swings (delightfully happy one moment, howling with agony the next). I gather that some of this can be hormonal. There is also some bipolar disorder on Jim's side of the family. We have brought up 'manic mood changes' and also 'manic energy levels' (mega-exercise bouts and minimal sleep for three days following by a complete crash) to Charlie's neurologist and, last time, he did check off 'bipolar disorder' as a diagnosis on Charlie's insurance form. Indeed, one of the medications Charlie takes is used to treat bipolar.

He has had great days at school all week. But on the way to school, something irked him -- Jim and I think it had to do with his iPad and a video he wanted to watch -- and, well, let's say it's a good thing that Jim is very adept at driving with a flailing child/teenager. When they got to school after a detour (they had also gotten stuck in a line of non-moving cars), Charlie was very upset and went to see the nurse. And then, he had 'a great day.'

On the whole, Charlie seems to be, to some extent, containing his behavioral storms. When he is very upset, he seems to need to let go of a tremendous amount of physical energy, possibly an effect of us having him walk or run or bike to allay his agitation. Needless to say, doing so it not really possible when you are in a car (and a moving car in traffic).

Back to the drawing board? Of course. That's been not so much a mantra as a necessity, a sine qua non, in life with Charlie.

And there is a big part of me that, doors closing and all that, is very pleased at seeing how Charlie is growing up. He is much more aware of not wanting to have messy 'temper tantrums' and 'behaviors.' He knows the aftermath is not good. He is a long way off from being able to stop himself form having the above at most instances, but the self-awareness is a big step.

We're meeting next week with the director of a camp run by a chapter of the ARC (Association for Retarded Citizens). We're looking into Charlie attending the camp for just a week in August (after ESY is over), but there are a lot of caveats. The top one is that there are no more slots for kids who need a 1:1 staff to camper ratio; the slots that remain are 1:5. Charlie is currently in a class with a 1:2 teacher to student ratio and he'll be in a 1:3 setting in the fall. 1:1 seems like too much for Charlie right now, but 1:5 seems like a bit beyond what he might be ready for.

Charlie is to come to meet the director too so we'll see. Jim and I have talked about having Charlie possibly only attend for part of the day, for a few hours. We just get the sense that he is hankering to be with, well, someone else besides us his parents. The camp would only be a week, as it is.

Indeed, in thinking over the swimming lesson ending business, it's occurred to me that I've learned a few things about placing Charlie in situations that are (1) new and (2) don't have staff trained in teaching and interacting with autistic children. There will mostly be issues for him regarding (1) at the ARC camp, of course. One thing I think I need to gently impress upon future program directors and personnel is that Charlie has a pattern of starting strong, seeming to lose interest (as communicated in an upsurge of behaviors), and then settling in. Perhaps it can be said that his 'progress' is so slow because it takes him a really long time to process everything.

After which, the door of possibility opens wide.

Comments

Linda

And he is 13 going on 14. Peak time for moods, storms, wanting time away from parents. The door to 14 is knocking! What a week of doors.

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