No One Talks About The Loneliness Of Having A Child With Disabilities

When my son Felix was a baby, his muscle tone was so low that he couldn’t hold up his head. He and I spent so much time at paediatric therapy or shuttling to different specialists, trying to understand the root of his floppiness, that we barely got a chance to socialise. I couldn't bother worrying about finding friends for Felix. I all but forgot about my own. So when the opportunity arose to invite some young families over for a gathering in honour of mutual friends, I grabbed at it.

They came on a weekend afternoon: five couples with their new offspring, a friendly, bleary-eyed crowd, chatting about nappy rash and the difficulty of getting back to work. The adults settled in a circle on the living room floor, their babies perky in their laps, bouncing on nubby legs, or scooting out of reach into a cooing collective in the middle. I could not speak.

All those strong spines, those necks effortlessly holding those heads; all those hands easily grasping, pulling, tugging. They were younger than Felix and yet they could sit, they could wiggle across the floor. I knew that Felix’s muscle tone was low. But these other babies were almost unbearable to watch. Why could they just do this, without having to suffer as therapists manipulated their muscles? They looked back at me, eyes gleaming with delight — look at me! Here I am, splendid!

Felix sprawled in my lap. He was very chubby at that point. When he lay on his side, as he was then doing, his features were lost in his flesh. I tried to shift him into a more erect position. I wanted to show him off, to demonstrate to these people that he was splendid, too. I wanted them to see the compelling sparkle in his eyes, to hear his tipsy samurai laughter — Hee hee hee! Ha ha Aka! But Felix did not want to show off. None of my nudging or bossy kissing did any good. His eyes were glazed over, his expression slack, his head so heavy that my arm ached from supporting it.

What is the opposite of a revelation? A feeling that plunges you into despair. A sinking emptiness followed by a hot well of shame. I could no longer see his beauty. I was embarrassed of his lumpy, strange body. The parents in our living room kept chatting and laughing; their babies kept grabbing and goo-ing, unaware, as they should be, of my personal turmoil. Felix, however, wailed the loneliest wail I’d ever heard.

I could not get that incident out of my mind, that terrible onrush of shame. What if Felix had sensed it? What if that was what had provoked his lonely cry? Not his body, but his mother’s betrayal. Who cared if he could sit? Had I filled out so many forms regarding his gross motor delays that I was starting to measure him that way, too? I felt like I had betrayed myself. Not since junior high school had I cared about popularity, fitting in. I was happy on the periphery, so why was I desperate for Felix to act and look just like all the other babies? A month or two later, I admitted this to my friend Jenny, amid a good deal of tears.

She hugged me, wiping away a tear herself. She reflected that she and her husband and their friends who had just started families were, in spite of sleeplessness and nappy rash, in a sweet spot. “A honeymoon period,” I believe was her phrase. “But you guys, you are getting the full brunt of parenthood all at once.” I treasured this comment as it recognised both the particular uncertainty and strain my husband and I were facing, and interwove our experience with everyone else’s. We weren’t that different, we were just getting it all at once. Mostly I appreciated not having to explain myself or our situation further.

At 16 months, we would learn that Felix had periventricular leukomalacia, which meant that significant areas of white matter in his brain had died in utero. He would soon acquire other diagnoses, autism and cerebral palsy the most well known. As each brain has its differences, and our knowledge of neurological plasticity is patchy, the doctors could not tell us exactly how the altered architecture of Felix’s brain would affect his development, only that it would. He would be “moderately to severely disabled for the rest of his life,” our neurologist said.

Those words sounded so grim, and so incompatible with the boy that Felix was becoming. By the time that he was two, he had learned to hold his head up, sit, grab a set of keys and jingle them merrily. He had a bouncy infant walker with which he would scoot around the apartment, a wooden molecule model he loved to twist and turn, a killer grin. I didn’t think of him as disabled when we were at home. I thought of him as affectionate, diverting, strong-willed, funny. I thought of him as a kid doing his best to conquer the world, and doing a pretty good job at it. When we were with other children, though, his differences were clear.

I did not realise how isolated we had become until Felix was three-and-a-half, and our daughter was born. Miranda had springy muscles; observant, attentive eyes, and she proceeded to wow us with tricks we had not yet experienced: first steps, first drawing, first ABCs. I discovered that being able to talk about my child without having to explain the fundamentals of neurology made talking infinitely easier. Socialising with other families became enjoyable. This wasn’t only because I had more in common with other parents, it was also because Miranda liked being around other children. Her face would light up. When I introduced Felix to other children, his expression went blank and vacant. It hurt seeing him like that, and so I'd take him away.

The friends I made through Miranda and later her younger sister, Penelope, energised and encouraged me, and showed me how sustaining a community that rises around children can be. I wished that I had had this same sort of community when Felix was born. It wasn’t that I had been shunned; I had been surrounded by friends and family who wanted to help, and often did. Yet there was a gulf that couldn’t be broached. What I had needed when Felix was born, what I still needed, was the company of other parents who have kids with disabilities. Other people who get it without a word being said.

I knew that it would be difficult to get these people in the same room, the realities of competing medical appointment or therapy schedules, but the coop preschool where my girls went had given me an idea — in 2011, we turned an empty classroom into a non-profit play centre for children with disabilities. On the weekends, families from all over New York City came to explore music, art, and movement at our play space. Kids with disabilities such as autism, ADHD, blindness, paralysis, epilepsy, and their siblings and parents met one another, laughed, cried, climbed, spun, or simply lolled on beanbags, relaxing.

Extreme Kids has grown over the years, and through it my world has expanded in ways that I never would have imagined that lonely afternoon when Felix was a floppy, heavy baby, and I a despairing young mother. It has unleashed something in me: a quiet joy, that deep-down feeling of not being alone.

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