“What's that like?”
By Christine Mayer
Editor's note: The opinions expressed herein are those of the author exclusively.
By Christine Mayer
Editor's note: The opinions expressed herein are those of the author exclusively.
A simple question really - just three words. Three syllables even, yet I can't answer it. I can't bring myself to construct a sensible response. All I can think is, “No one has ever asked me that question. Three years we have been living with this diagnosis and no one has ever asked me that question.”
How odd that the question should hit me here, at a business dinner, in a conversation with someone I respect greatly but do not know all that well. My experience has been, especially with work colleagues, that there's no stronger conversation poison than the statement that our daughter Elizabeth has autism. The initial reaction is usually a moment of distinct discomfort. Then the confusion sets in. They don't know whether to express condolences – or is that insulting? Should they look at me? Had better look away. Should they do what most do, nodding, trying hard to look nonplussed, and saying something like “Um-hmm”, as if I just mentioned that Elizabeth plays soccer or is left-handed. I don't fault these well-intentioned people. It's hard to know what to say when you learn such a thing. The natural impulse to say “Damn, what a tough break!” doesn't seem quite appropriate in this politically correct world where people are just different.
Given the innumerable conversations I've had with work colleagues resembling the awkward exchange described above, I am caught speechless and totally unprepared to answer the question posed by this direct, yet disarming and sincere man. The question is hanging in the air, my brain still reeling in search of an answer.
In my own defense, the answer has changed over time. When Elizabeth was first diagnosed, about four months before her third birthday, I was crushed. I can tell you what that was like: hell. I was terrified, sad, mourning the loss of my perfect little girl, confused about what we should do next, determined to “fix this,” equally aware on some level that I couldn't. It was hell.
Fortunately, it's not like that anymore, at least not most days. There are times when I am still overcome with plain old sadness – when she doesn't get pleasure out of birthdays and holidays, when I allow myself to think about what it must feel like to be inside her head looking out at this confusing world, when I wonder if she will ever have a best friend. But mostly I have taught myself to stay away from such thoughts. This is not to say that denial is the answer. It's more that my husband and I have devised a survival strategy that is grounded in acceptance of all the things we cannot change, Elizabeth's autism being first among them. We've gotten better at changing the things we can – the way we talk to her, the way we set up her day for consistency and predictability, the way we teach her things she needs to do in the typical world while simultaneously appreciating her for the “atypical” child she is. It's liberating for us, and I suspect for her, when we honor the fact that she's not a typical child. She's Elizabeth. She loves solving puzzles -- right-side up, upside-down, “blind” as we've named it (with the picture facing the floor and the gray cardboard backs of the pieces facing her). She hates it when I wear socks and shoes in the house. Anyone else – no problem. But she will physically peel them off of me. She can't resist a glass of water. It simply must be poured into another vessel and topped off to the point where it arches convex over the top of the glass. Any way you slice it, she's not a typical child.
What is typical is our love for her. Like the love we have for her big sister and little brother, it is an all-consuming, powerful love that could make a parent do just about anything. We've done a few crazy things already. We suspect there will be more before all is said and done. It's quite possible she will never understand the drastic things we have done to give her the best shot she can have in life, but we couldn't care less. It's that kind of reckless, abiding, beautifully typical love.
The books tell us that we are still getting over the loss of our idealized child and I'm sure they're right. We are still getting used to the idea that she will have an IEP, not a berth into the IB program. But despite the atypical nature of Elizabeth's path in life, and perhaps even because of the atypical nature of who she is, she brings us great joy. We are privileged to have such a sweet, interesting little girl as our own. It is for this reason, and in keeping with her powerful love of routine, that our bedtime wishes sound the same each night:
Mom: “I love you.”
Elizabeth: “I love you.”
Mom: “Mommy knows you're in there.”
Elizabeth: “Okay.”
Mom: “Mommy will never give up on you.”
Elizabeth: “Okay.”
Ironic that Elizabeth, a person of few words, has the last word on this question. It's okay.
How odd that the question should hit me here, at a business dinner, in a conversation with someone I respect greatly but do not know all that well. My experience has been, especially with work colleagues, that there's no stronger conversation poison than the statement that our daughter Elizabeth has autism. The initial reaction is usually a moment of distinct discomfort. Then the confusion sets in. They don't know whether to express condolences – or is that insulting? Should they look at me? Had better look away. Should they do what most do, nodding, trying hard to look nonplussed, and saying something like “Um-hmm”, as if I just mentioned that Elizabeth plays soccer or is left-handed. I don't fault these well-intentioned people. It's hard to know what to say when you learn such a thing. The natural impulse to say “Damn, what a tough break!” doesn't seem quite appropriate in this politically correct world where people are just different.
Given the innumerable conversations I've had with work colleagues resembling the awkward exchange described above, I am caught speechless and totally unprepared to answer the question posed by this direct, yet disarming and sincere man. The question is hanging in the air, my brain still reeling in search of an answer.
In my own defense, the answer has changed over time. When Elizabeth was first diagnosed, about four months before her third birthday, I was crushed. I can tell you what that was like: hell. I was terrified, sad, mourning the loss of my perfect little girl, confused about what we should do next, determined to “fix this,” equally aware on some level that I couldn't. It was hell.
Fortunately, it's not like that anymore, at least not most days. There are times when I am still overcome with plain old sadness – when she doesn't get pleasure out of birthdays and holidays, when I allow myself to think about what it must feel like to be inside her head looking out at this confusing world, when I wonder if she will ever have a best friend. But mostly I have taught myself to stay away from such thoughts. This is not to say that denial is the answer. It's more that my husband and I have devised a survival strategy that is grounded in acceptance of all the things we cannot change, Elizabeth's autism being first among them. We've gotten better at changing the things we can – the way we talk to her, the way we set up her day for consistency and predictability, the way we teach her things she needs to do in the typical world while simultaneously appreciating her for the “atypical” child she is. It's liberating for us, and I suspect for her, when we honor the fact that she's not a typical child. She's Elizabeth. She loves solving puzzles -- right-side up, upside-down, “blind” as we've named it (with the picture facing the floor and the gray cardboard backs of the pieces facing her). She hates it when I wear socks and shoes in the house. Anyone else – no problem. But she will physically peel them off of me. She can't resist a glass of water. It simply must be poured into another vessel and topped off to the point where it arches convex over the top of the glass. Any way you slice it, she's not a typical child.
What is typical is our love for her. Like the love we have for her big sister and little brother, it is an all-consuming, powerful love that could make a parent do just about anything. We've done a few crazy things already. We suspect there will be more before all is said and done. It's quite possible she will never understand the drastic things we have done to give her the best shot she can have in life, but we couldn't care less. It's that kind of reckless, abiding, beautifully typical love.
The books tell us that we are still getting over the loss of our idealized child and I'm sure they're right. We are still getting used to the idea that she will have an IEP, not a berth into the IB program. But despite the atypical nature of Elizabeth's path in life, and perhaps even because of the atypical nature of who she is, she brings us great joy. We are privileged to have such a sweet, interesting little girl as our own. It is for this reason, and in keeping with her powerful love of routine, that our bedtime wishes sound the same each night:
Mom: “I love you.”
Elizabeth: “I love you.”
Mom: “Mommy knows you're in there.”
Elizabeth: “Okay.”
Mom: “Mommy will never give up on you.”
Elizabeth: “Okay.”
Ironic that Elizabeth, a person of few words, has the last word on this question. It's okay.
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