I saw a touching video about an autistic boy who used to be part of a high school basketball team as a waterboy, but because of his devotion to the team and his love of the sport, he was given a jersey by the coach and allowed to play during the second half of the game. Everyone cheered when he entered the court, but what was most surprising to all was that he was able to score 3-point shots six times! The video ended by saying this boy knew he was different, but didn’t realize he would be THAT different.
A few months ago, I watched a game of basketball among teenage children of Independent Living and Learning Center in Mandaluyong where my eldest son studies. It was one of several games at their Friendship Cup for special children last year. I remember having sent a text message to my brother who plays basketball as a hobby that that particular game was a thrill to watch. It was funny how no matter which team scored, the audience cheered. The same people cheered for both sides. How strange is that? Maybe not strange at all.
It tugs at the heartstrings when individuals we least expect to perform go beyond their limitations. It becomes a communal triumph for everyone who has had a hand in making these types of accomplishments possible. The cheers reflect not only a celebration of victory but a breaking away from stereotypes and expectations, a kind of jeer, even, against the many faces of prejudice that prevent these different individuals from ever being like the rest of us. But is that what we really want them to be – like the rest of us?
In the book, Far From the Tree by Andrew Solomon, the author speaks of illness vs. identity and how difficult it sometimes is to distinguish one from the other, how there is actually a thin line differentiating the two, but how they both are, at the same time, so distinct from one another. “We often use illness to disparage a way of being, and identity to validate the same way of being. This is a false dichotomy. In physics, the Copenhagen interpretation defines energy/matter as behaving sometimes like a wave and sometimes like a particle, which suggests that it is both, and posits that it is our human limitation to be unable to see both at the same time…Many conditions are both illness and identity, but we can see one only when we obscure the other,” Solomon says.
As a parent, I have a natural tendency to look for my own characteristics passed on to my children. Needless to say, as soon as a baby is born, there is an attempt by each parent to outdo the other in the number of physical attributes that point to a semblance of themselves. When your child turns out to be more different than you can ever imagine, isn’t the first question – WHY? Why is he different? Almost an affront to our being, to our family history, we try to make sense of the oddity like it was something that can be clearly understood once named, and once named, like it was an illness that can be cured or SHOULD be cured.
In the same book, Solomon tells a story about Deborah Kent, a congenitally blind woman who was taken aback by her husband’s strong desire for their newborn to be seeing. In Kent’s essay published in 2000, she wrote, “I didn’t long for sight any more than I yearned for a pair of wings. Blindness presented occasional complications, but it seldom kept me from anything I wanted to do… If he could accept blindness in me, why would it be devastating to him, even for a moment, if our child were blind as well?”
I would probably never quite fathom how it is for a blind woman to never have any knowledge of sight and be content without it, just as her seeing husband could accept her but not quite understand how she can NOT wish for her child to see. But that is because we can see, and that ability taken away, is a frightful thing. Not to those who never had it in the first place.
Deborah Kent was born blind. My child was born with Cornelia de Lange Syndrome. They may be two different things that require their own ways of coping with a society that presumes sight and timely developmental milestones, but they are similar in that we sometimes look for a cure instead of working towards acceptance.
My son is turning 15. He has the cognitive age of an eight-year old. He goes to a pre-vocational school where he does woodwork, crafts, practical life skills like buying and selling, plays sports occasionally, sings and dances which he particularly likes. He goes to speech therapy every week. He wears a hearing aid which he so vehemently detests. He hasn’t been wearing it for a while now. Years back I placed him in a mainstream program with the thought that just maybe he will be able to do what the rest of his classmates can do, maybe after some time the difference will be negligible. At some point, I realized he will always be different. He knows it, his friends know it, and soon enough I came to know it.There should be no shame nor a sense of failure in finding a place where your child will thrive, whether it be a regular school, a special school or a homeschool program. It does not make him worse not to be like the rest. In fact, in his pre-vocational school, my son is still not like everyone else. Neither are any of his classmates. Even in sameness, differences exist. Illness or identity?
It can be exhausting. Trying to make my son add two-digit numbers, count money, tell the time, read sentences, understand the parts of a plant, learn the history of our country are things he can probably breeze through if he weren’t born with CdLS. He would probably be playing soccer with his brother, shooting hoops with his uncle, or diving with me and his dad. But he doesn’t like staying under the sun too long, he’s not very fond of ball games, and he easily gets chills in the water. That’s him, not his condition. He likes to sing and dance. Those, he does. Well.
I can imagine how it must be for those other parents of children who have it harder than my son does. Some of the kids in his school can barely feed themselves, others utter sounds incomprehensible they are seldom understood. Intervention provides opportunities for them to communicate better, to do self-help skills, and sometimes it seems like THEY are doing us a favor, to make it easier for us to understand them. Solomon says, “There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted – even in imagining another life.”
And even as we imagine, we know we will not trade what we have for something else. The author had it right when he said, “Having a severely challenging child intensifies life. The lows are almost always very low, the highs are sometimes very high…Even as the downside wears you thin, the upside keeps on giving…most of the families (described in the book) have ended up grateful for experiences they would have done anything to avoid.”
Three-point shots six times. We cheer not because he was able to do it like the rest of them, not because he was able to do it inspite of himself, but that he was able to do it BECAUSE of himself. That was what I felt the day I saw my son’s friends play basketball. I would’ve cheered for my son, too, except he was doing his own cheering. Like I said, he likes to dance. So, he was out there on the floor dancing. I was behind the videocam, prouder than ever.