On the “necessary” side, I've committed Peter to weekly tutoring for math and a handwriting therapy class. Fortunately, we don’t have to deal with any surgeries this summer, but he will be getting braces. I also try to take care of several clinic visits so that he doesn't miss too much school. That usually means lots of appointments in July and August to see his 8-10 specialists.
On the “fun” side this year is the CCA retreat, karate classes, the library’s summer reading program (he’s a bookworm!), Bible School, and trips to visit out-of-state family. Altogether that is way more scheduled time than Peter or I would like. I know what Peter craves most of all is the freedom and relaxation of simply being home with no school projects or homework deadlines. Who doesn't, right?
What seems pronounced to me during the summer is how Peter’s disabilities have become more socially isolating for him. He has a difficult time with the heat, so outside activities like sports and day camps are not enjoyable. Peter used to love the pool, but his friends have moved beyond the shallow waters and are now diving at the deep end. The most he can do is float around on the surface due to his still open trach stoma. Peter is also restricted from playing contact sports because of a single-pelvic kidney and c-spine instabilities. Eating, which is also very social, is a problem as well (he's had a g-tube since birth). Separately, these restrictions don’t seem like such a big deal, but they are extremely frustrating. In many ways, they are defining his social interaction, his level of independence, his self-confidence, and his overall personality.
Peter has become an expert at escaping into a fantasy world, usually of Star Wars or Harry Potter, and it often consumes his entire attention-- to the point where it is almost obsessive. I think this has a lot to do with his physical limitations as well as the stress and anxiety he has from being so medically complex. I do love his active imagination, but most of his friends don’t want to live in a constant fantasy world of pretend anymore. They are in organized sports and activities that Peter either can’t or won’t participate in. Right now, Peter’s main avenues for social interaction are video games and movies. These activities level the playing field and enable him to connect with friends in a relaxed and fun way.
I’m sure the dilemma of a “necessary” vs. “fun” summer schedule will continue well into Peter’s teen years. The best I can do is to find a balance that doesn't overwhelm him or the rest of our family. Schedules are not what summer should be about. It should be about creating memories and spending extra time together. All I know for sure is that Peter and I will be waiting in line when the new Harry Potter movie comes out in July!
Happy Summer!!!
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