What it takes
I've been meaning to write this for quite some time now. Actually, I've been meaning to write this for 14 days. But every time I sit down at the computer I just kind of stare at the blank Blogger page. There are words here, but they don't want to come out. There are important ideas and thoughts and emotions, but I can't seem to get them straight to make something out of them. Probably because this post hurts a little. This post is my "April is Autism Awareness Month" post.
Autism has been around this family for awhile now. If one can be used to such a thing, then I'm used to it. I think I, probably better than anyone else, understand Sweet Girl and what it takes for her to get through a day. I have a pretty good sense of what needs to happen, what needs to not happen, and how we can deal with life intervening on both fronts. We work hard so that the world is not too much, yet still ever-present for a little girl who prefers to live in her mind. She rises to that challenge sometimes beautifully, sometimes maladroitly, and sometimes not at all. It's often hard for me to watch and it is never easy for her.
And the truth of the matter is, I'm angry about that. I'm angry about autism. I love my daughter regardless of labels and ability; mountain high and valley low. My heart is wrapped around her like a second skin. I am not angry she has autism (though I've certainly had my moments of "Why her?" as it seems that there really is no rhyme nor reason to where autism turns up next). I am angry autism still exists. That when her pediatrician said that I was probably right, the only thing I walked out of the office with (besides Sweet Girl) was a shoulder squeeze and a "Best of luck." I am angry that the mainstream medical community's "no known cause/no known cure" serves as the end all be all on the subject. I am angry that the CDC is still studying rates of incidence despite three decades of exponential growth in the diagnosis. I'm angry because everyone is so busy jumping back from autism with their hands in the air and saying "Not my fault!" that no one is making any progress on that front at all.
I know I'm not the first person to be angry about a disease. I know some childhood disease have been around much longer than autism with little in the way of treatment. But if you aren't aware of autism yet, if you don't have a child, know someone with a child, have read about someone with a child with autism yet, you're either removed from all society or willfully obtuse. The rate of incidence of autism has skyrocketed since the early 90s. It now affects approximately 1% of children born in the US. In the world the US ranks second (behind Great Britain) in autism rates. And we are still quibbling over whether it's real or not. It's real. It may not be the child in the corner rocking back and forth that many people expect, but it's real. As a matter of fact, as I write this, it's outside playing in the sandbox.
I could bore you with statistics; list theories of genesis and causation; discuss the higher rates in military families and Somali-Americans in Minnesota; tell you that we should take this seriously because we're raising more and more children that will not be able to care for themselves as adults, but all of that means little if you don't know what autism takes. Because autism takes a lot. Autism takes away milestones. It takes patience. It takes money. It takes all kinds of therapies. It takes time. Autism takes away words. It takes away friends and families. It takes a huge effort for everyday tasks. Autism takes everything you throw at it, and gives little in return. I'm lucky, blessed beyond lucky as a matter of fact, because I saw autism take most of Sweet Girl and I've seen, every day, more and more of her come back. Not everyone is that lucky though. Because autism takes. And if we're not careful, if we don't move beyond awareness to action soon, it will take a generation. It will take a generation and that's impossible to get back.
So it hurt me a little to write these words, but not nearly as much as it will hurt me if I have nothing new to write about next April.
Autism has been around this family for awhile now. If one can be used to such a thing, then I'm used to it. I think I, probably better than anyone else, understand Sweet Girl and what it takes for her to get through a day. I have a pretty good sense of what needs to happen, what needs to not happen, and how we can deal with life intervening on both fronts. We work hard so that the world is not too much, yet still ever-present for a little girl who prefers to live in her mind. She rises to that challenge sometimes beautifully, sometimes maladroitly, and sometimes not at all. It's often hard for me to watch and it is never easy for her.
And the truth of the matter is, I'm angry about that. I'm angry about autism. I love my daughter regardless of labels and ability; mountain high and valley low. My heart is wrapped around her like a second skin. I am not angry she has autism (though I've certainly had my moments of "Why her?" as it seems that there really is no rhyme nor reason to where autism turns up next). I am angry autism still exists. That when her pediatrician said that I was probably right, the only thing I walked out of the office with (besides Sweet Girl) was a shoulder squeeze and a "Best of luck." I am angry that the mainstream medical community's "no known cause/no known cure" serves as the end all be all on the subject. I am angry that the CDC is still studying rates of incidence despite three decades of exponential growth in the diagnosis. I'm angry because everyone is so busy jumping back from autism with their hands in the air and saying "Not my fault!" that no one is making any progress on that front at all.
I know I'm not the first person to be angry about a disease. I know some childhood disease have been around much longer than autism with little in the way of treatment. But if you aren't aware of autism yet, if you don't have a child, know someone with a child, have read about someone with a child with autism yet, you're either removed from all society or willfully obtuse. The rate of incidence of autism has skyrocketed since the early 90s. It now affects approximately 1% of children born in the US. In the world the US ranks second (behind Great Britain) in autism rates. And we are still quibbling over whether it's real or not. It's real. It may not be the child in the corner rocking back and forth that many people expect, but it's real. As a matter of fact, as I write this, it's outside playing in the sandbox.
I could bore you with statistics; list theories of genesis and causation; discuss the higher rates in military families and Somali-Americans in Minnesota; tell you that we should take this seriously because we're raising more and more children that will not be able to care for themselves as adults, but all of that means little if you don't know what autism takes. Because autism takes a lot. Autism takes away milestones. It takes patience. It takes money. It takes all kinds of therapies. It takes time. Autism takes away words. It takes away friends and families. It takes a huge effort for everyday tasks. Autism takes everything you throw at it, and gives little in return. I'm lucky, blessed beyond lucky as a matter of fact, because I saw autism take most of Sweet Girl and I've seen, every day, more and more of her come back. Not everyone is that lucky though. Because autism takes. And if we're not careful, if we don't move beyond awareness to action soon, it will take a generation. It will take a generation and that's impossible to get back.
So it hurt me a little to write these words, but not nearly as much as it will hurt me if I have nothing new to write about next April.
I think you should install a weep-o-meter on this blog for your family members. We're good criers, you know, and we love you and yours so very, very much.
ReplyDeleteYou already know how I feel, from visiting me over there on the Diary. I think you're inspirational! You already know more than I ever did, and knowledge is power. Combined with love...unstoppable.
ReplyDeleteYou are a wonderful mother and I wish more kids could be as lucky as yours. If you ever need anything, just call.
ReplyDeleteBrenda (Wax) Logan
@Carrie - Maybe we can put one in for family gatherings and make it an alternative energy source?
ReplyDelete@Megan - Thank you! That means a lot to me.
@Brenda - Your kids are awfully lucky to have you, you know. :)
I like the alternative energy source idea. It has definite possibilities.
ReplyDeleteThat was the most beautiful, articulate piece --- on anything --- I've read in a long time. I know one family that has a few high-functioning Ausperger's Syndrome members, but that's it, until I found the blogs of so many mothers talking about their kids. It's appalling that more isn't being done. Maybe because no super-rich or super-powerful family has experienced enough of it to fund research?
ReplyDelete