My nine year old doesn't have autism. Her little sister does. However, that nine year old often shares a ‘look’ with me. To be fair, it’s actually a range of ‘ looks’ I wish she hadn’t come to know. These ‘looks’ should be reserved for grown-ups who glance at each other to share unspoken sentiments about the trivialities or silliness of youth. The looks we share are a silent agreement that we understand her little sister’s autism and all those ways, both good and bad, it can affect each of our lives. There is a look of frustration. A sideways glance to see if I have noticed that her sister has pushed her too far. A check-in to see if she can take a break from autism for a while, knowing her sister can never do the same. There is a look of anger. Though rare, it can be both heartbreaking and liberating because Grace has taken a backseat to her sister for so long. This look, with its raised shoulders and furrowed brow, occurs when her sister aims the worst parts of autism directly at me, her mother. There is a look of sadness. A look we very rarely exchange, you’ll be pleased to know, but a look we share when her sister becomes confused or angry because the world stopped making sense. There is a look of embarrassment. And that’s ok, because when her sister casually tells the woman at the next table in a restaurant that she ‘loves her big belly’, it’s okay to turn a few shades of red. There is a look of guilt. This look guts me because she is already wondering ‘why not me’. Why was she born ‘normal’ while her sister fights to make sense of every single day? There is a look of fear. A look that scares us both. A look that says, ‘will she be ok?’ Will she drive a car, live alone, have a family? All things a girl not yet ten should never think about. There is the a look of appreciation: With her eyes crinkling, and a knowing smile she nods to me because at nine she is already aware of how funny her very literal sister can be. There is a look of pride. A small smile when her sister makes a connection that has been troubling her for so long. There is a look of surprise. When her sister smashes a barrier that has been holding her back in some way. And most importantly: There is a look of love. When her sister plays happily or makes a friend. When all the frustration dissolves because these sisters have a connection that eclipses it all. There is a 'look' to autism and I see it every single day.
2 Comments
Ferne McCombe
9/27/2017 04:37:49 pm
Chanel: I have only met you a few times but I read a lot of what you put out there and I am SO impressed with you. You are probably lightening the weight on so many young parents by sharing life with Kate in all its avenues. I See Kate as a wonder because her little soul shines through so brightly (much like my sweet Lucas) and I love pictures of her, doing her own thing, wearing what she wants to wear (and looking so damned cute), being a part of a group of kids who "march to different drummers but in their own group" and we get such a kick and a joy out of watching them just being themselves. We are all better for knowing these children.
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My second comment: not stalking I promise. Just enjoying that moment when you walk into a 'used book' store, take a deep breath, and realize how many 'stories' there are to read and absorb.
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