Leaps of faith
Aug. 16th, 2004 10:13 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
charliesmumWell, I did it. I sent an essay to these people who are writing a book about Autism, and had asked for essays from people with Autism, or families of people with Autism, describing how it affected their lives.
I got an email back today saying I'll hear in 8-10 weeks whether or not they decide to use it. Either way, I'm glad I did it. While I'm not sure how much further being included in the book takes me as far as being a 'published author' but they are my words, and if they take them, they'll be in a real book with pages and everything, so it's all good. And if they don't take me, well, at least I tried. Most of my problem is that I haven't even taken the risk, haven't tried to get anything out there for a long time. Even getting rejected makes me more of a writer then just sitting around moaning about how I want to be a writer does.
If anyone wants to read it, the essay is behind the cut.
My son, Charles, was diagnosed with Pervasive Developmental Disorder/Not Otherwise Specified when he was three years old. He’d been diagnosed earlier in his life with a developmental delay and low muscle tone, but he had other behavioral problems that were causing all sorts of difficulties in his life that didn’t fit in to either of those categories. The reason I took him back to the neurologist was because his aggressive behavior had gotten him kicked out of four day care centers in three months and I was at my wits end. To be honest, as much of a shock as the diagnosis was, it was also rather a relief to finally have a name for his condition.
Since then, I’ve learned more about Autism then I had ever known. Before, I knew only what I’d seen on TV and in movies, and was amazed to learn that Autism has a wide range of definitions. I’ve learned that the media images I had for Autistic people barely scratch the surface of the condition, and that it was neither as cut and dried or as helpless as I’d thought it was. I always assumed that all Autistic people lived trapped inside their own minds, and would have to spend their lives in an institution, never having the chance to lead a normal life.
I soon found out most people had the same images of Autism that I had. When I tell people my son is Autistic, I get sympathetic noises and looks of concern and I imagine they are waiting for him to flap his arms, bang his head against the wall or to exhibit some other kind of odd behavior because that’s what they assume autistic people do. Often, because my son has a very high-functioning form of the disorder, I’ll get something along the lines of ‘But he seems so normal.’
And I agree. I tell them that he is in therapy, he goes to a special class, he has already come far in his recovery, and he has a good chance of someday fitting in, of being ‘normal.’ Still, I know he will never look at the world in quite the same way as the typically developing child does, and this will cause him trouble. I fear for the day the kids at school will descend on him like hyenas and ridicule him for not being normal.
After all, we live in a world that strives for ‘normal’, as difficult as that is to define. No one really wants unique. We want our children to fit in, to match. Normal, after all, makes life smoother. Normal means not being picked last in gym class, not being picked on in the schoolyard. Normal means fitting in.
People in general have a hard time with things that don’t fit in with the current definition of normal. I’ve noticed that TV shows and movies have a habit of either portraying people with disabilities as some kind of angelic messengers sent from God, or childlike ‘nerds’ in tightly buttoned shirts and pants that are too short for them; spouting things about Judge Wapner and Kmart. As the mother of a child with disabilities, I find both portrayals completely unfair to people with disabilities and to the world in general. My son isn’t a saint, and he isn’t the village idiot. He is, like most children, a little of both and more besides.
No one wants their child to struggle, to live outside of normal, and I will always wish he could have an easier life. I won’t lie and say every day has been a picnic, I’m not a TV “Movie of the Week” saint any more than my son is, and there have been times when his behavior has made me want to walk out of the house and not stop until I hit a secluded beach somewhere. Still, without the challenges I wouldn’t have the positive moments, and I wouldn’t trade any of it for the world.
I’ve considered myself blessed because I don’t have the luxury of taking anything in my son’s development for granted, each step, word, act of independence is doubly significant in his life. I have been lucky enough to meet other parents of children with PDD, as well as adults with the disorder, and it has given me a sense of community, rather like being in an exclusive club. I’ve discovered a strength I didn’t know I had, and am a better person for it.
Autism has a positive side, too. I’ve often thought that, without the Autism, Charlie might not be the little mathematics genius that he is. He might not have the same sense of determination to conquer things that has allowed him to learn to pick songs out on the piano or successfully cross the monkey bars on the playground. These, I think, are Autism’s gifts to him.
That afternoon in the neurologist’s office, I learned that Autism was a spectrum. The doctor described it as an umbrella, but I prefer to picture it as a rainbow, arching over me and every other family that has been touched by Autism, and at the end of that rainbow is the bright, loving and charming little boy that is my son – Autism’s gift to me.
I got an email back today saying I'll hear in 8-10 weeks whether or not they decide to use it. Either way, I'm glad I did it. While I'm not sure how much further being included in the book takes me as far as being a 'published author' but they are my words, and if they take them, they'll be in a real book with pages and everything, so it's all good. And if they don't take me, well, at least I tried. Most of my problem is that I haven't even taken the risk, haven't tried to get anything out there for a long time. Even getting rejected makes me more of a writer then just sitting around moaning about how I want to be a writer does.
If anyone wants to read it, the essay is behind the cut.
My son, Charles, was diagnosed with Pervasive Developmental Disorder/Not Otherwise Specified when he was three years old. He’d been diagnosed earlier in his life with a developmental delay and low muscle tone, but he had other behavioral problems that were causing all sorts of difficulties in his life that didn’t fit in to either of those categories. The reason I took him back to the neurologist was because his aggressive behavior had gotten him kicked out of four day care centers in three months and I was at my wits end. To be honest, as much of a shock as the diagnosis was, it was also rather a relief to finally have a name for his condition.
Since then, I’ve learned more about Autism then I had ever known. Before, I knew only what I’d seen on TV and in movies, and was amazed to learn that Autism has a wide range of definitions. I’ve learned that the media images I had for Autistic people barely scratch the surface of the condition, and that it was neither as cut and dried or as helpless as I’d thought it was. I always assumed that all Autistic people lived trapped inside their own minds, and would have to spend their lives in an institution, never having the chance to lead a normal life.
I soon found out most people had the same images of Autism that I had. When I tell people my son is Autistic, I get sympathetic noises and looks of concern and I imagine they are waiting for him to flap his arms, bang his head against the wall or to exhibit some other kind of odd behavior because that’s what they assume autistic people do. Often, because my son has a very high-functioning form of the disorder, I’ll get something along the lines of ‘But he seems so normal.’
And I agree. I tell them that he is in therapy, he goes to a special class, he has already come far in his recovery, and he has a good chance of someday fitting in, of being ‘normal.’ Still, I know he will never look at the world in quite the same way as the typically developing child does, and this will cause him trouble. I fear for the day the kids at school will descend on him like hyenas and ridicule him for not being normal.
After all, we live in a world that strives for ‘normal’, as difficult as that is to define. No one really wants unique. We want our children to fit in, to match. Normal, after all, makes life smoother. Normal means not being picked last in gym class, not being picked on in the schoolyard. Normal means fitting in.
People in general have a hard time with things that don’t fit in with the current definition of normal. I’ve noticed that TV shows and movies have a habit of either portraying people with disabilities as some kind of angelic messengers sent from God, or childlike ‘nerds’ in tightly buttoned shirts and pants that are too short for them; spouting things about Judge Wapner and Kmart. As the mother of a child with disabilities, I find both portrayals completely unfair to people with disabilities and to the world in general. My son isn’t a saint, and he isn’t the village idiot. He is, like most children, a little of both and more besides.
No one wants their child to struggle, to live outside of normal, and I will always wish he could have an easier life. I won’t lie and say every day has been a picnic, I’m not a TV “Movie of the Week” saint any more than my son is, and there have been times when his behavior has made me want to walk out of the house and not stop until I hit a secluded beach somewhere. Still, without the challenges I wouldn’t have the positive moments, and I wouldn’t trade any of it for the world.
I’ve considered myself blessed because I don’t have the luxury of taking anything in my son’s development for granted, each step, word, act of independence is doubly significant in his life. I have been lucky enough to meet other parents of children with PDD, as well as adults with the disorder, and it has given me a sense of community, rather like being in an exclusive club. I’ve discovered a strength I didn’t know I had, and am a better person for it.
Autism has a positive side, too. I’ve often thought that, without the Autism, Charlie might not be the little mathematics genius that he is. He might not have the same sense of determination to conquer things that has allowed him to learn to pick songs out on the piano or successfully cross the monkey bars on the playground. These, I think, are Autism’s gifts to him.
That afternoon in the neurologist’s office, I learned that Autism was a spectrum. The doctor described it as an umbrella, but I prefer to picture it as a rainbow, arching over me and every other family that has been touched by Autism, and at the end of that rainbow is the bright, loving and charming little boy that is my son – Autism’s gift to me.