Camp Charlie

by Kristina Chew

categories: acceptance, Advocacy, Recreation

Published July 30, 2009 @ 12:39AM PT

That's how Jim and I have been characterizing our summer. At first I saw Camp Charlie as a camp with one camper (Charlie) and two counselors (Jim and me), hurrying around in a somewhat harried manner. As July comes to an end, I've felt that it's become a camp with three campers on a full schedule of:

(1) Morning: Academic time (Charlie goes to Extended School Year (ESY), Jim and I sit in front of our respective computers and get as much done as we can).
(2) Afternoon: Recreation (a long bike ride, sometimes a swim + gym time); quiet time (in which I try to sneak in typing practice and other "edutainment" between video-watching on the computer); out-in-the-community time (often visiting various stores); canoeing (Jim's latest addition to his and Charlie's roster of outdoor pursuits)
(3) Evening activities: Shorter bike ride and/or basketball

Back in June, I was anticipating that this was going to be a tough summer. Charlie's school year ended with a stack of incident reports. He'd already been having a difficult and difficult-er time as the school year progressed and Jim and I were called into a district-requested IEP meeting in June. That meeting was cancelled by the district and rescheduled for July at which time we found ourselves back on the road to find Charlie a school.

We've been making the rounds visiting schools, reviewing Charlie's records in the school district offices, setting up appointments, having Charlie observed.

Many of you have been on this road before and your support suggestions have been more than welcomed. Just knowing you're all out there has made a tremendous difference: I'm heartened not only when I read your comments here. When we're at the table talking to the school district and the tape recorder is running, it means a great deal to know that you're not alone, that your child is one among many children for whom our educational system is not working. And that means, we need to change the system, change what is going on in the classroom and in the schools, and figure out how to create an appropriate education and accommodations for students with disabilities.

(As many people have pointed out to me, I should watch what I'm writing here about my son's school situation; school districts, consultants hired by the school districts, and others can of course read this. So I'll leave it at that.)

But back to Camp Charlie.

After making his way through some rough waters at the end of the school year, Charlie has been well. May and June were made further interesting due to his neurologist changing his medication. Charlie has been taking Risperdal for the past four years, since he was eight years old. Throughout June, we slowly weaned him off it and started some new medications. I have been feeling quite dubious at how well any of these medications might be helping Charlie after seeing him have so much trouble while on Risperdal. But, so far, the meds seem to helping him and he simply seems much more peaceful easy-feeling, as Jim likes to put it.

On a side note: Charlie's Risperdal dosage has of course increased as he has grown. When he first started the medicine, he had a significant increase in his appetite and put on the pounds. People often throw up their hands and say "what can you, it's a side effect"; we did our best to provide Charlie with healthy choices (argh, I sound like a nutritionist!) and kept him active. Over time, the increase in appetite seemed to wane, but it would come back as the dosages increased and by this past spring, I often found Charlie looking down at his expanding middle, very perplexed at what was going on. With the change in meds, his appetite has leveled off, though it's still quite in abundance (he did just grow another inch and has been wearing a pair of Jim's size 10 1/2 shoes). I can't say for sure, but being more in a fit and fighting trim has made Charlie happier; certainly, he's gotten more agile than ever.

Which of course may also have something to do with all that bike riding. Certainly the other members of Camp Charlie have been definitely getting into shape this summer!