“I don’t want to go in the water!” he cries.
“Why not?” I plead. We’re only two days into our week at the beach.
“It’s too wet.”
Are these words coming from my 5.5-year-old son with Fragile X or from Captain Obvious? Is this a moment to celebrate that he is articulating himself so clearly or a moment to cry as his misery impacts us all, changing our plans for the day, the week?
I love the beach: sand, sun, ocean, shells, and picnic lunches. But each and every one of these elements that I love presents a challenge to my child who is hypersensitive, hyper-vigilant, and hyper-stimulated due to the mutation in his X-chromosome. He is anxious by every change or distraction: a seagull flying overhead, a dog walking by, or children tossing a football too close to us. All of these are perceived as potential threats. He is both calmed and exhilarated by the waves hitting his body: he needs more and he wants less at the same time. The rocks and shells bother his feet, and yet he seeks them out for the physical stimulation they provide. He is a walking, swimming, sand-castle-building contradiction, but he’s mine!
Like many children, he is so disturbed by bees and sand that our picnic lunches are never finished outdoors. He is so sensitive that putting sunscreen on his neck and ears usually results in a wild chase and tackle. And, of course, immediately upon exiting the ocean he needs to wash his feet in the hose and change his bathing suit because it’s wet.
The first few times he came out of the water after hours of playing and complained that he was sandy and wet, I just laughed at him. Like our biblical matriarch Sarah who laughed when God’s angels told her husband, Abraham, that she would bear a child well into her 90s, I laughed at the absurdity of his claims. But then I looked at my son, happy, playing, swimming, running, and I realized, he loves the beach too. But he loves it in his way, his very special, somewhat strange way. He’s learned to make accommodations for his own needs so that he can actually enjoy the experience. He figured it out long before I did.
We often speak of reaching people “where they are.” The idea comes from the Torah, when Abraham has banished Hagar, Sarah’s handmaiden who is also the mother of Ishmael, rival to Sarah’s son Isaac (yes, you want drama? No need for NCIS! Just open the Torah!). God tells Hagar not to worry, that God hears the boy, Ishmael, “where he is.” In the same way, when I leave my son to his own intuitions and let him figure out what he needs at the beach, he is actually capable of figuring it out.
The beach with a child with special needs is still not easy. Our beach bag will be packed with three or more bathing suits every beach day from now on. We’ll bring the headphones (to tune out other people’s radios, airplanes, and even seagulls). But we’ll also bring our picnic lunch and our sunscreen, and plan to enjoy every last bit of summer together.