Now You See It, Now You Don't: The Tether
25 July 2010
The beach is one of the few places where we find ourselves simply standing and looking. Most of all we're looking at Charlie and calculating how soon it will be before he drifts towards the lifeguards' orange flag and we have to call on him to get out of the water, and point him towards the other flag.
On Sunday as on Saturday, you could walk out quite far into ocean and the water was not up to your waist and the waves lapped at you gently, with the occasional dunking to remind you, this is not a swimming pool. Charlie walked out very far and we still could see him amid all the other swimmers. When he veered past the imaginary line from the orange flag into the ocean, I waded out towards him and was able to get him to turn around quite quickly by calling his name. He smiled and made his way back to the sand, splashing at the water with his long fingers, and then ran back towards the other flag (which Jim was standing next to) when I pointed.
Charlie always needs supervision, but not in the constant, urgent way he once did, especially when the ocean was as calm as it was this past weekend
As I was standing and letting the waves bury my feet in the sand on Saturday, I saw a girl of about 4 or 5, and something in the way she was hovered over by two adults, and in the way she held onto one stone in her right hand, and in her movements or rather the lack and hesitation of them, made me think, is she like Charlie? I couldn't tell what her speech was like---the ocean is noisy, and everyone seems to be talking and plenty of people (not only children) are squealing as the waves take them here and there. But the little girl wasn't saying much and her movements---little jumps, a hand trailing in the water---were just a tad behind that of all the other kids in the water (and there were many).
Every year we've gone to the beach, we've met kids on the spectrum, though mostly younger ones; it's rarer to meet a child Charlie's age or older. We have seen some adults, as carefully and lovingly watched as we do Charlie. It must be something about the atmosphere at the beach, the sand and sun, no one dressed at all formally, everyone there pretty much just to swim and enjoy---we've had many good, just enough intense conversations with other parents were standing beside the ocean, before we all have to turn to take care of our kids.
A couple of years back, Charlie would have always been close by Jim and me so it's likely that the other family with the little girl might have noted us and Charlie and a conversation would have ensue. Other parents of kids like Charlie are, Jim and I have found, just as likely to be quietly observing Charlie as we their children. But Saturday and Sunday Charlie was out there swimming and I was just another person on the beach.
Sunday I saw the little girl again, this time holding hands with a young woman, who was dragging small inflatable blue boat. Again, the young woman had just enough of an extra air of attention, and the little girl's movements were more measured, to make me think of Charlie when he was much younger. The young woman picked up the little girl (who was wearing a swimming vest) who held onto her tightly. Some maneuvering was in order to get the boat into the waves and the little girl in the boat. After about ten minutes, the young woman brought the boat back onto the sand and carried the little girl out into the waves and tried to have her float on her back and stand up in the water on her own.
So familiar.
Not just the hesitance, and dependence, of the child on the young woman, but the way the young woman was so careful, even while trying to get her to do a few things on her own. The way the little girl stood, a bit stiffly.
And there I was, incognito, and incredibly aware of how far Charlie has come since he and I often dunked by a wave because he insisted on me carrying him into the ocean, and I was too fearful (and too poor a swimmer) to go beyond the part of the sand where the waves hit the shore.
Though truly I'm still always hovering, watching, hoping Charlie can do a little more.
Sunday morning---perhaps a lagging response to the ridiculous heat of Saturday, a maybe-oncoming cold, stomach distress from all that hot sun---we heard two loud knocks downstairs. Charlie was dressed and already getting his helmet and it wasn't till he and Jim were back and he'd asked to get his swimsuit that we saw him poking at some plaster from a hole in the wall and glancing at us. Jim and didn't make any big deal about it and quietly got ready for the beach.
It was a good trip, with us three just hanging on the sand and in the water for quite awhile, Charlie gobbling up some sushi as we drove around, Jim and me noting how the outside temperature was falling (down to 71 degrees) as a heavy rain fell and the wind got dramatic while we inched up the Garden State Parkway. Charlie was in good spirits throughout the long, slow ride and talked about using the computer. When we finally got home, he showered off the sand, called on me to pull up YouTube, and then was in bed and sound asleep by 7pm.
We still always have to have our back eyes wide open.
It's just that the tether, while stronger than fishing line, is often invisible these days.
Matt was sound asleep at 7:15 tonight. I put him back on Geodon a few weeks ago, so he was only on Risperdal this time for almost 6 months.
We had a week of heat wave and now back to high 70s and low 80s for the next week again. I love this weather and wish it was year round.
Last day of ESY is Aug 3rd and 1st day of school Sep 13th - so a big gap of nothing - going to do 2 sessions a week of speech therapy - still making up time from 5th & 6th grades with no svcs.
Posted by: Bonnie Sayers (autismfamily) | 25 July 2010 at 21:22
Last time we were at the beach there was an older teen or young adult there by himself. It was pretty clear from his movements, his headphones (not that he wore them, but how he wore them), the phrases he repeated, and his tendency to write words he heard in the sand (including Chris's name which I must have been saying every 5 seconds) that he was on the spectrum. Everyone kept pulling their kids away from him, it was sad. Aside from a smile I didn't know what to say to him or if I should say something to him.
Posted by: Nicole | 26 July 2010 at 02:19
@Nicole,
I guess I would try for a smile, maybe a hi if that seemed the natural thing to do? I would have liked to have talked to the little girl's parents/caregivers but there was never a moment when Charlie was nearby and they would have seen him with me; just tried to send out a positive feeling, if that makes sense.
@Bonnie,
Charlie was up at 4am this morning. It is, amazingly, cooler (that means high 80s and not nearly as humid). ESY goes till Aug 11 and he is back to school after Labor Day. I think ESY goes so late due to the snow days which I'm sort of thankful for now.
Posted by: Kristina Chew | 26 July 2010 at 04:21