Now that vacation is over, I’ve had time to comprehend fully what the ten days off from school has meant to me. Because my older son is a special needs kid, with multiple social, verbal, and behavioral issues, and my second son is “typical,”(though by no means ordinary) time off has very different implications for each of them. All the usual things that families encounter or participate in during vacations, such as holiday parties, enrichment activities, and leisure time are completely different experiences for my boys, and this was never more clear to me than this past vacation.
Holiday parties are a breeze for my younger son. Even if there were only toddlers there, he’d find someone to play with. He knows how to behave, how to be a fairly unobtrusive child at a crowded gathering of adults, and he is rewarded by their smiles, their compliments. For my older son parties have always been a trial. We never know if he will feel relaxed at a party, or if he will be seized with the impulse to make trouble. At one holiday party he overturned drink glasses, blew out decorative candles, and even licked the salt off the chips and put them back saltless. Yet, at another party, he made basic small talk with some people, stood like a gentleman while we chatted, and actually got onto the dance floor and danced.
The differing experiences my boys have with leisure time was highly apparent during vacation week. I cannot help but compare the abundant vacation week activities offered to my younger son, with the barren landscape available to my older son. Out of the many vacation-week activities open to “typical” kids, such as museum workshops or sports camps, my younger son chose to take an art class. For my older son, the music schools and the art centers can’t “handle” my child’s challenges, such as his expressive language disorder, his resistance to anything new, and his occasional mild tantrums due to frustration. Everyone’s very nice about it, but still— not a good match. I didn’t get very far with our town’s own Parks and Recreation Department, either. Everything they offer is “open” to everyone, of course, but they, too, do not have the staff to make it work for a moderate to severe special needs kid. Even the few special needs vacation camps (which are pretty far away from here) have required us to use an aide — at our expense — bringing the total for four vacation days to over $300. Over this vacation, the message that was loud and clear was: “challenging kids need not apply — or pay through the nose.”
Fortunately, I was able to organize certain activities by myself, some that the boys could do together, like walking to the library or making a gingerbread house, and arranging playdates for my younger son, or using my older son’s after school tutor to work with him on social skills, writing, reading, math, and leisure activities. But I could not altogether avoid despair and frustration. When the tutor went home, there were still hours and hours to fill, and my son’s boredom would quickly turn to impulsive behavior like ripping apart plants, his socks, his brother’s things. Sometimes, however, he managed to focus himself on his books, videos, and the computer. In those precious moments when I saw him bent over a book, reading aloud in his soft voice, I would stop and listen hungrily to the sweet sound, like the emerging noises of spring after a long winter.
A lot of things became clearer than ever this vacation. My special needs child, already so limited in what he can do because of faulty neurological wiring, is also limited by the choices provided by the world around him. And I fear that he will become narrower in his repetoire as he gets older, because he will get farther away from what the “typical” kids are like and even more so as their activities remain closed to him.
It’s so much easier creating programs for kids like my younger son, who make us all look good. I don’t begrudge him his oyster of a world; the fact that things come so easily to him is a gift, and one of the happiest facts of my life. It’s just that my older son, every bit as worthy and lovable, deserves it too. Next vacation I’m springing for the special needs vacation camp and an aide, but I wish I didn’t have to.
Copyright 2000, Susan Senator