Recently, we had the pleasure of meeting another family whose daughter has just started attending the Center for Discovery, where Eden goes to school. The family has a young boy close to my son Noah's age, and the two hit it off almost immediately. They had so much in common -- a fascination with Legos, a shared love of science class, much derision for math, and sisters who were both disabled. Finally, Noah had met another boy with a sister like his own, surely another important commonality that the two boys could bond over.
My son has gotten to the age where he's begun to notice the reaction others have to his sister when we are out in public. At the tender age of eight, he's picked up on the rude stares and discourteous gawking that some adults and most children will do when my daughter is out in public. His reaction brought me back to my own feelings about first venturing out with Eden. When she was much younger, the attention that Eden would draw when in public was very hurtful to me. At first, Eden could “pass” for a typical child in her stroller without eliciting reactions from strangers. The older she got, however, the more she “stood out” and her disability became more noticeable. She would vocalize inappropriately while we were at the mall, which drew stares from other shoppers. Her low muscle tone would make her mouth gape open and cause her to drool excessively. Unlike other kids her age who would meaningfully take in their surroundings and try to make sense of it all, Eden stared vacantly when we took her out shopping or to the park.
The pitying gazes inevitably came. Adults, particularly other parents, in whom recognition dawned when they looked at my “poor” daughter, and then at us, the unfortunate Mom and Dad. At first, the looks cut like daggers through me. I was angry enough without engendering the pity of others. I felt such discomfort with the reactions of other people to my daughter’s condition that I would try to avoid going out in public when I could. Other parents would run to the park with their children; not me. When I would relent and take Eden out to the swings, I would push her like the other parents would. But as their children would smile and hearten their parents by their enthusiastic reactions, my infant daughter would just swing back and forth, seemingly emotionless. The other parents would try not to be overt, and would often quickly look away if I met their gaze, or worse yet, give me an awkward smile that thinly veiled their true thoughts.
In later years, when my daughter became self-injurious, being in public with her was probably the most painful. We would be out at an amusement park, trying to enjoy a family vacation, and my daughter would melt down in tears, throwing a fit, and smashing her already bruised arms against her stroller to the point that she became black and blue. On particularly bad days, she would scratch herself to the point of bleeding. During these moments, the unconcealed horror on other parents’ faces was too much to bear, let alone while trying to deal with the crisis of my daughter’s behavior.
Eventually, I started building immunity to the reactions of others. I would push my daughter’s adapted wheelchair through the mall and look right through other people, studiously avoiding their gazes so not to notice their reactions. Today, I continue this approach of seeing other parents as if they were transparent so as not to have to acknowledge their reactions at all. Better this than to let the misplaced pity get to me.
But now, my son Noah has begun to notice these reactions. He’s a very perceptive kid, and feels a bit self-conscious about being in public with his sister. He sees how rude some adults are, but mostly he notices children, who have no filter on their emotions and stare shamelessly. Noah comments on how rude they are and how uncomfortable it makes him. His mother and I try to explain that children are often just curious about anyone who is different than they are. It’s good advice, we think, and frankly counsel that I should probably heed more often myself.
Nevertheless, their looks bother him, as does the fact that none of his other friends have disabled siblings. He’s a bit jealous, pointing out how his friends have sisters and brothers who they can play with, though he doesn't. Eden won't really acknowledge her brother or any other children, for that matter. One of the reasons we got a dog years ago was for Noah to have someone or something to play with in lieu of a typical sibling
It’s a bit of a lonely existence, I feel, being the sibling of a disabled child. You don’t have the same experiences growing up as your friends do. For this reason, we recently got Noah involved in sibling support group. Once or twice a month, a group of children Noah’s age will get together to play, eat pizza, and, through the help of a social worker who facilitates the group, share their feelings about what it’s like to have a disabled brother or sister. Noah loves the group, and rarely misses a meeting. He’s finally found other kids who are as “weird” as his sister – who know what it’s like to have a sister who makes loud, inappropriate noises in public, or who doesn’t really care about playing Lego(!). I think it gives Noah a sense of belonging and an understanding that he’s not alone. Growing up is tough enough without the stresses of having a disabled sibling. Now at least Noah has found a few other children who know “the trouble he’s seen”. :-)
And as for Noah’s new found friend, the boy whose sister now attends the Center for Discovery, I can only hope that the boys continue their burgeoning friendship. Finally he can have a friend who visits his own sister at the Center and can share his experiences – or more likely, just go swimming and talk about which of the Center’s many animals they like best!
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