Head Above Water: Surviving Special Needs Parenting Together

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When my son jumped into the pool, he sank. His mouth and eyes were wide open, and his hands high in the air. Straight to the bottom he went. The swimming coach grabbed him; he popped up with a mouth full of water and swallowed it.

My son loves the water. He knows nothing of the power it can have over him. He acts as if it is a wet air that surrounds him and lets him breathe as he splashes and plays in its pools. With an opportunity to join a swim class for special needs children, we jumped at it.

First, he’d have to learn to shut his mouth, or he'd have about a gallon of pool water swallowed before ten minutes was up. I held a ball in the air and exaggerated making the M sound, holding my mouth shut for emphasis.

"Say Mmmmmm," I said over and over as the coach held his waist. He'd look up; clamp his mouth as hard as he could and occasionally move his arms while looking at the ball I held up in the air. Back and forth we went. He’d tire, forget all about the M part, and eventually swallow a bunch of water again.

As I walked back and forth holding the ball in the air, I was struck at how bountiful and beautiful this child thinks the world is. I’ve been told by people on elevators, in waiting rooms, and in parks (to name only a few), that I am so lucky: They are so happy! Down Syndrome children do have this energy that brings a bubble of warmth and joy. “They” can be really happy, cuddly, and love to hug (sometimes too much). Yet, there is a character in so many of these children that can be stronger than Superman, more powerful than a locomotive, and perhaps could leap buildings in a single bound.

In between those bursts of happy, my son is strong-willed, strong-minded, and determined to do things his way. Those daily challenges of will and expressions of might can exhaust me and make me want to throw up my hands and say: I just don’t get it.

As a single parent of a special needs child, I feel often my head is below the surface—the sharks will circle; the tide is strong. It's a constant struggle to stay afloat, let alone get through the grocery store. I must clamp my mouth shut, kick, plow forth, and try not to swallow too much.

I've been told this child came to me because I can handle it; I must be strong. When my head goes below the surface and I swallow a mouthful, I feel like the weakest person on the planet. But I'm not in it to win the race; I'm in it to go the distance. After about 45 minutes of swimming, my son was chilled, and his lips had turned blue. His strong will was softened. He asked when he could swim again. We carefully walked around the edge of the pool to the locker room. I asked him to take his shorts off.

“No!” he said stubbornly. I felt the water rise; the sharks circle. I turned the warm water on for the shower. He put his hand under the spray of water. “Yes,” he said. He took off his shorts and stepped in. I felt my head rise and watched as the sharks turned away.

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