It's been the worry that's ever on my mind as the parent of a child who, we realized early in his young life, will only be able to take care of himself to a (very) limited extent. Until Charlie was around 6 or 7, I wasn't able to admit to myself that he would always need supports for his entire life, will need someone else to help manage his finances, will need a guardian (Jim and me, and then someone else when we are gone), will need to live in something like a group home or other supported living environment. That's why, like many a parent of an autistic child, we got all caught up in doing all sorts of intensive, experimental, 'alternative,' educational/sensory-related/biomedical treatments. I am sure that such a worry fuels the many parents who try such treatments. You can feel like you're looking into the abyss when you think of yourself no longer being here, and your now adult child—able in many ways but in effect helpless in many others–left to his or her own devices and the world just ain't always a warm and kind place.
Hence it's been heart-overturning gratifying to see Charlie these past few weeks swimming in the ocean on his own, heeding our directions to stay between the lifeguard's flags, and knowing that he needs to heed our directions (as indicated by him turning around in the waves when he hears Jim or me calling his name). To be standing on the sand and watching Charlie swim has been something we were not sure we'd do, at least not in the near future.
Last year, Jim had to constantly go out in the waves with Charlie and physically pull him through the water when Charlie drifted beyond the invisible line indicated by the lifeguard's flags. As you may imagine, Charlie was not too thrilled about this and, accordingly, let his parents know that he felt pestered by their (that is, our) attempts to keep him safe. Swimming just became a lot less fun and beach time a bit more stressful. Jim and I often both breathed silent sighs of relief as we left the beach, knowing that we'd gotten through another session dealing with the flag problem.
We remained baffled about how to teach Charlie about the flags and, while many people made suggestions, no one knew how to address the problem, aside from explaining about the flags with a lot of words (which we'd certainly tried to do).
So I'm thinking the notion of 'swim between the flags' has just kind of sunk into Charlie over time. Maybe he's understood it for awhile but 2010 has been the first year when he's been able to put together that knowledge with where he should be when he's out in the waves. Too, he takes such joy swimming out there—he was all smiles for what seemed like a full hour when we were at the beach Sunday—that I suspect he often just couldn't remember about flags and all that, he was having too much fun (not to mention a total wondrous sensory experiences) rocking and rolling in the waves.
Sunday was what we call a triathlonesque day. Charlie wanted a walk when he woke so out I went with him. Then he rode his bike for 10 miles with Jim. Then Jim drove us down the Garden State Parkway to the sounds of the Louis Armstrong birthday broadcast; Charlie dozed off.
We hit the beach soon as we parked, Charlie running ahead with his boogie board. Really, he is magic in action in the water; he did more of his backfloating swimming headfirst into the ocean, arms moving, as well as getting in lots of rides on waves (with his boogie board) and in the crests of waves (without the board). He got a running start and jumped into oncoming waves face-on and kept swimming with powerful strokes and a white wake of foam behind him. He dove under and did a flip in a rising wave.
It was quite a show, though altogether unconscious on Charlie's part. He attracts (as suggested by this photo) a fair amount of attention, both for his spectacular swimming, and for some other reasons. Charlie is a good-looking kid (yes I am partial, being his mother, but still…..) and thanks to all the above-noted exercise, he is in shape. His being disabled is signaled fairly quickly by Charlie's or what is–from the perspective of random others—the lack of it.
As Jim says, Charlie's just unique, one-of-a-Charlie.
After swimming, we made stops for both sushi and miscellaneous items at a WaWa for Charlie, and more seafood sandwiches for Jim and me (Charlie has no interest in sandwiches, a long-term after-effect of being on the gluten-free casein-free diet?). He didn't request the ferris wheel and he was fine as we drove by the beach house.
Once home (as we were, quite speedily, thanks to no traffic on the Garden State Parkway), Charlie got a little weepy. Maybe it's sinking in that we won't be staying at the beach house? Maybe the effects of being out in the sun on a 90+ degree Fahrenheit day? — Charlie worked himself through it and ended up doing two more walks, one in the early evening with me (relieved that, even in 90+ degrees, shade and a slight breeze make the heat bearable) and another just as the fireworks were starting up with Jim. Charlie kept spinning during the latter walk, Jim noted; I wondered if he might be trying to shake the water out of his ears?
As Jim said while his feet were getting buried in the wet sand and I paused from snapping my usual ridiculous amounts of photos of Charlie in the ocean: First he held Charlie in his arms and let go of him a little in the waves. Then he swam with Charlie on his back. And then he and Charlie swam side by side, out ever farther into the waves. And then the past two years of cajoling, coaxing and (unwillingly) dragging Charlie back. And now here we are, standing in the sand, Jim at one flag and me near the other, eyes on Charlie swimming in the ocean.
It's been an evolution.