One of my favorite dinnertime traditions in our house is when we share our daily highs and lows. Brooks picked it up from his school (LearningSpring), and my husband and I are grateful for this simple but powerful construct that provides our son with a convenient shortcut that focuses him and cuts out the perseverative white noise. And it works nicely for my husband and me too!
But last month brought my least favorite incarnation of this tradition when Brooks came home from a Y day trip to an indoor water park: “My low today was when I drowned-ed.”
To my credit, I did not choke on my dinner. I have always been deeply afraid of my son’s swimming challenges, especially when paired with his challenges communicating that he can’t swim. But the staff at the Y knows all this, and we consistently provide them with extra reminders at all morning drop-offs that involve bathing suits, as my husband had that very morning.
Having pretty much lost my appetite, even for a family favorite like cheesy pasta, I calmly moved on to some follow-up questions; but it only got worse.
Here’s how he presented it: he had gone down a big slide, and even though a counselor had promised him she would catch him at the bottom, she didn’t. Yes, the water was deep. He went under and then came back up again, and then he went under again, except this time, he didn’t come back up. And that was when the lifeguard saved him.
Now the smell of the broccoli was making me nauseated. Somehow I withheld blurting out the questions that multiplied exponentially in my head and instead slowly continued my careful line of pointed questioning: “Where was the lifeguard? Was she sitting on one of those tall chairs high above the pool and she had to come down to save you?”
“No, Mom—she was right there!” Brooks answered immediately. “Two miles away.”
I didn’t sleep that night. Even though I knew the Y staff would have called me if something significant had happened, every time I closed my eyes I saw Brooks drowning with no one to help him because of some innocent misunderstanding; because a counselor didn’t realize that Brooks can describe something right beside him as two miles away.
First thing the next morning, we met with the program director and got the facts: The deepest section of the pool only three and a half feet, and there was a lifeguard positioned at the bottom of the slide to help all the kids up. From their perspective, Brooks was afraid of the slide at first but then worked up the courage to try it and everyone was proud of how brave he was. Whether or not it was necessary at that point, I felt the need to reiterate my “we need the staff to be vigilant” speech: Brooks cannot swim; he can easily get separated from his partner; he can easily be unaware that he’s even been assigned a partner. Even though they know him well and they are familiar with his challenges (some of his counselors over the years have even become trusted babysitters!), there is no denying that what they offer is a mainstream program with some special education support on the side. Most of the time, this is the ideal program for my son.
There is an inherent risk in exposing Brooks to the wider world of kids and adults who are not necessarily versed in autism, but my husband and I both believe it’s worth taking. Even though it continues to keep us up at night.
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This morning on the A train, I found myself looking at a young teenage boy with Nike sneakers and sweet eyes. Old habits die hard: I am still looking for Avonte.
Marni Goltsman
Capturing Autism 