Leah BensonGRIEF
June 20th 2008 05:10
It always surprises me when I read memoirs written by parents of autistic children-- why do they all seem so perfectly-suited to the demands inherent in raising a special needs son or daugther? Acceptance, advocation, securing the newest therapies, flying across the country to consult with the top specialists... nothing seems out-of-reach or overwhelming. And then there are the parents who love the autism right out of their children: the jenny mccarthy's. They are the best at inspiring a lifetime's worth of shame. But I am not those parents. I am the parent who literally buckled under the weight of chronic grief; the parent who held her breath for an entire year after hearing the words "autism" and "developmental delay."
My son turned eight this month. Eight years of doctors, IV's, pills and therapies; eight years of giggling, video games, salamanders and Elmo. Nothing in my life before him could have prepared me for the pain-- or the joy-- of motherhood. But when I imagined becoming a mother, I never imagined the complexity of autism. Unlike diabetes or cancer, autism is a part of what makes my son who he is... his personality is inextricably entwined with the "symptoms" of this disorder. And who would he be without the stimming, the sensory issues, the quirks... would he be recognizable without the autism? How do I grieve over the day-dream of a different son-- a son who could talk or make friends or hug me without squirming in agony?
Not everyone expereinces grief in the same way. For some people, it is something they "go through." But when I think of "going through" something, I imagine a beginning and an end, and in grieving Max's diagnosis with autism, it feels like it will never end. Unlike the grief following a death, for example, it feels like something that continues unraveling long after the initial blow. There is no funeral to mark the moment and no cards of condolence. Instead, there is strange looks from other parent's when your son starts making loud, gutteral noises while running wildly up and down the aisles of Target or the messy mixture of sadness and guilt every time you hear about some developmental milestone of your niece or nephew, knowing your son may never accomplish those same things. It's the kind of grief that turns your eyes red and heavy and makes your laugh a little softer. It disconnects you from the people at your office, and most of all, from the other mothers at the playground. Like bungling boards in the 19th century, It becomes a wedge between you and your spouse, turning your bed into a vast, stormy sea.
For the first year after Max's diagnosis, I couldn't grieve. Looking back, I imagine it was a combination of shock and the demands of putting some kind of thereaputic plan into place, but the result of all that stress was that my inner life was a complete mess. By the time Max was approaching his third birthday, I was self-medicating all my feelings with drugs and alcohol, putting a hundred percent of my energy into Max's needs, and giving nothing to myself or my marriage. Within another year, I would be sitting in a pyschiatric hospital room wondering how in the hell I had fallen into the darkest hole of my life. But first, I would have to realize the true sting of grief's bite and stop running long enough to reach out for help. That would take most of Max's third year and a good part of his fourth.
And it would take a superhuman act of courage, an act I wasn't yet ready to take. First I had to figure out what exactly I was grieving, and then, how to "get through" it, how to both survive and ultimately embrace the journey of autism. To be continuued...
My son turned eight this month. Eight years of doctors, IV's, pills and therapies; eight years of giggling, video games, salamanders and Elmo. Nothing in my life before him could have prepared me for the pain-- or the joy-- of motherhood. But when I imagined becoming a mother, I never imagined the complexity of autism. Unlike diabetes or cancer, autism is a part of what makes my son who he is... his personality is inextricably entwined with the "symptoms" of this disorder. And who would he be without the stimming, the sensory issues, the quirks... would he be recognizable without the autism? How do I grieve over the day-dream of a different son-- a son who could talk or make friends or hug me without squirming in agony?
When Max is outside, he prefers to wear airport headphones, otherwise he always covers his ears. He has always had sensory sensitivities, especially to loud sounds.
Not everyone expereinces grief in the same way. For some people, it is something they "go through." But when I think of "going through" something, I imagine a beginning and an end, and in grieving Max's diagnosis with autism, it feels like it will never end. Unlike the grief following a death, for example, it feels like something that continues unraveling long after the initial blow. There is no funeral to mark the moment and no cards of condolence. Instead, there is strange looks from other parent's when your son starts making loud, gutteral noises while running wildly up and down the aisles of Target or the messy mixture of sadness and guilt every time you hear about some developmental milestone of your niece or nephew, knowing your son may never accomplish those same things. It's the kind of grief that turns your eyes red and heavy and makes your laugh a little softer. It disconnects you from the people at your office, and most of all, from the other mothers at the playground. Like bungling boards in the 19th century, It becomes a wedge between you and your spouse, turning your bed into a vast, stormy sea.
For the first year after Max's diagnosis, I couldn't grieve. Looking back, I imagine it was a combination of shock and the demands of putting some kind of thereaputic plan into place, but the result of all that stress was that my inner life was a complete mess. By the time Max was approaching his third birthday, I was self-medicating all my feelings with drugs and alcohol, putting a hundred percent of my energy into Max's needs, and giving nothing to myself or my marriage. Within another year, I would be sitting in a pyschiatric hospital room wondering how in the hell I had fallen into the darkest hole of my life. But first, I would have to realize the true sting of grief's bite and stop running long enough to reach out for help. That would take most of Max's third year and a good part of his fourth.
And it would take a superhuman act of courage, an act I wasn't yet ready to take. First I had to figure out what exactly I was grieving, and then, how to "get through" it, how to both survive and ultimately embrace the journey of autism. To be continuued...
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Great post.