My son needs a haircut. Desperately. His hair is almost covering his eyes, and he regularly points to it to remind me that it’s too long and floppy. I’m holding out on that trim because the longer Max has that mop top, the longer he looks like a younger kid — and it’s better for him if people don’t perceive his real age.
Plenty of mothers don’t want their adorable children to get older, but I have a good reason.
Max is 12 years old. He has cerebral palsy, which has caused challenges with speech and fine motor skills, along with cognitive impairment. Sometimes, my husband or I have to help feed him when we’re out at restaurants because he has trouble grasping the spoon. He uses a speech app on his iPad to communicate but if that’s not handy, we have to translate what he’s saying to others because his words come out garbled, as hard as he tries. We need to hold his hand walking up and down stairs. He cannot yet dress himself. Occasionally, he drools because of a lack of oral-motor control.
Max is a good-looking kid (granted, I have no objectivity whatsoever). He’s also on the short side for his age. When his hair has that bowl cut thing going on, he can easily pass for a kid who’s 10 or 9 or even younger; when he gets a haircut, he instantly looks a couple of years older. Recently, we went on a train ride where you had to purchase a ticket for children ages six and up and the conductor checked to see how old he was. “Ell!” said Max. “Twelve,” I translated.
People have always commented on Max’s cuteness. A boy with disabilities who’s happy-go-lucky with a great head of hair has his charms. People like Max; they want to interact with him … mostly. There are also those who stare at him, sometimes curiously and sometimes in a rude, gaping sort of way. They sense that Max is older than he looks. They’re wondering what’s up with him. “Is he a little kid?” young children who meet him occasionally ask, perplexed.
What happens, I worry, as Max gets older and he’s no longer that adorable kid? I mean, Max will always be his sunny self. But he will attract yet more gawking as it becomes clear he is an adolescent who has issues feeding himself and talking. As much progress as society has made toward accepting and respecting those who have disabilities, we have a long way to go. Some people aren’t comfortable around those who have visible differences. They see the special needs, not the person. They don’t know what to say or how to act; I’ve occasionally had to tell other moms and kids at the park or birthday parties, “Just say ‘Hi.”’
Max, he doesn’t consider himself different; he just knows to be himself and power on. Although he doesn’t yet notice the looks, I fear that someday, he will. And the last thing I’d want is for him to start thinking that something is “wrong” with him. Actually, there have been times when he thinks it’s me who has a problem. If he’s saying a word and I don’t get it, he’ll lean in close to my ear and say it louder. That “it’s not me, it’s you” mentality could prove to be a good buffer in a world that tends to view people with disabilities as lesser human beings.
And so, I prolong the haircut for as long as possible. I lovingly ruffle his hair, joke about Max looking like one of the Beatles, and pray that his youth will last a little longer, and that he’ll be protected from the stigma that awaits him.
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1 thought on “<span class="entry-title-primary">I want to keep my disabled son looking like a child for as long as I can</span> <span class="entry-subtitle">It's better if people think my son is younger than his years, because it's so easy to see the special needs and not the person.</span>”
This is so heartbreaking and I feel it. My sister is dealing with something similar.
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