rehashing a cure
Covering old ground here. But, as things do, the topic of cure is rearing its head in the online community again. And, as I say, I have a somewhat unique perspective.
I love all of my boys completely. And I know that if Isaac and Sam were all I had, I might want ever so much more for them than I already do. I might want for them to act more 'normal.'
Isaac with his stuck thoughts, immersion into Stampy's world of Minecraft, revving from calm to swinging fists if pushed too fast, too hard.
Sam with his always stuck thoughts, his constant stimming. His love of girls, but uber-nerdiness limiting his likelihood of connecting with one.
But I do love them and accept their versions of autism. Isaac who shares our love of science and expands our interests like a bomb pushes out the walls of a building. Sam, who you think wasn't REALLY listening, but then comes out with amazing facts said in a matter of fact tone that lets you know it is the truth as stated in Wikipedia.
But then Nathan comes into the equation. Nathan who's been on more meds in the last 6 years than I've ever taken in my whole life. Nathan who couldn't be taught in our local school. Nathan who suffers from mood swings and aggression. Nathan who, when he couldn't wake up any earlier, just stayed up all night until 5am. Nathan who loves purely and without prejudice.
Nathan is 13 now. Time is slipping, slipping, slipping into the future. And he is still so....limited by his disabilities.
His progress is perhaps what makes the other boys' progress look so acceptable.
But I don't want his life serving as an example. A negative.
I want him to seek his own ground. To have choices. To have options. I want him to make his own choices. I want him to have control over his mind and body. I want him to feel comfortable in his body so he doesn't have to hurt himself or others.
I would accept what Sam and Isaac have. And I would accept a cure. I can't imagine him as NT. And he certainly wouldn't fit in our family very well as NT! But if it would give him that degree of control over his mind, body and future, I would accept it.
And that is the divide in our community. The divide between the choice makers, and the ones who have almost no choices and the people who want them to have those choices.
We caregivers of those with the limited choices would take anything. We are sick of hearing that "It's not the autism, it's the co-morbidities." Can you really divide my son into his component parts of autism, bipolar, expressive language delay, and whatever the hell else diagnoses you can assign him? Is there a dividing line of this is 'acceptable autism' and this is "all the co-morbidities that you SHOULD be hating instead?" Why is it that I should love the autism, but it's okay to dislike the rest?
And why are you distancing yourself so strongly from people like Nathan? Why do you always have to say "It's not autism, it's the other things." Are you afraid? Because there, except for a twist of fate - the same fate that gave Isaac and Sam their version of autism rather than Nathan's version - there goes you?
I love all of my boys completely. And I know that if Isaac and Sam were all I had, I might want ever so much more for them than I already do. I might want for them to act more 'normal.'
Isaac with his stuck thoughts, immersion into Stampy's world of Minecraft, revving from calm to swinging fists if pushed too fast, too hard.
Sam with his always stuck thoughts, his constant stimming. His love of girls, but uber-nerdiness limiting his likelihood of connecting with one.
But I do love them and accept their versions of autism. Isaac who shares our love of science and expands our interests like a bomb pushes out the walls of a building. Sam, who you think wasn't REALLY listening, but then comes out with amazing facts said in a matter of fact tone that lets you know it is the truth as stated in Wikipedia.
But then Nathan comes into the equation. Nathan who's been on more meds in the last 6 years than I've ever taken in my whole life. Nathan who couldn't be taught in our local school. Nathan who suffers from mood swings and aggression. Nathan who, when he couldn't wake up any earlier, just stayed up all night until 5am. Nathan who loves purely and without prejudice.
Nathan is 13 now. Time is slipping, slipping, slipping into the future. And he is still so....limited by his disabilities.
His progress is perhaps what makes the other boys' progress look so acceptable.
But I don't want his life serving as an example. A negative.
I want him to seek his own ground. To have choices. To have options. I want him to make his own choices. I want him to have control over his mind and body. I want him to feel comfortable in his body so he doesn't have to hurt himself or others.
I would accept what Sam and Isaac have. And I would accept a cure. I can't imagine him as NT. And he certainly wouldn't fit in our family very well as NT! But if it would give him that degree of control over his mind, body and future, I would accept it.
And that is the divide in our community. The divide between the choice makers, and the ones who have almost no choices and the people who want them to have those choices.
We caregivers of those with the limited choices would take anything. We are sick of hearing that "It's not the autism, it's the co-morbidities." Can you really divide my son into his component parts of autism, bipolar, expressive language delay, and whatever the hell else diagnoses you can assign him? Is there a dividing line of this is 'acceptable autism' and this is "all the co-morbidities that you SHOULD be hating instead?" Why is it that I should love the autism, but it's okay to dislike the rest?
And why are you distancing yourself so strongly from people like Nathan? Why do you always have to say "It's not autism, it's the other things." Are you afraid? Because there, except for a twist of fate - the same fate that gave Isaac and Sam their version of autism rather than Nathan's version - there goes you?
Wonderful! You nailed it. I love your understanding that if it is workable, then you accept it, but if it doesn't work, then let's have a cure. Options are all we want, people! I don't think there is a person alive who would force a cure on someone, but for some of these folks, a cure could be like a giant key to unlocking that trapped personality. I wonder daily what my younger son thinks and would love to have that key. My older one might tell me how he interprets autism (and incidentally, I think he would like a cure, too -- he sounds like Sam) but he can't even speak for Alan because they are very different. I get tired of adult autistics telling me that they know what my son is thinking. All they can tell me is how they thought/felt as a child. There is exactly one person who can tell me how Alan is thinking/feeling and he isn't talking! Sigh. Have a great weekend.
ReplyDeleteI have just started the journey wih my son JP. I have excepted that my dreams for my son are gone and now it's all about helping him find his own. Will he be able to live on his own as an adult or will he be with us forever? I would love for him to be with me forever but I'm not so sure he would love that. It remains to be seen if a cure would benefit JP but I can tell you that I don't like Autism. I can also tell you that JP is not and autistic boy, he is a boy with autism. Autism is not who he is, it's something he has.
ReplyDeleteThere really is such a huge divide and it can get so ugly. I mention my views occasionally and then cross my fingers that I don't get any backlash! All I can say is that I adore my son, however, I would go for the cure. My son is on the more severe end of the spectrum, therefore life is a challenge for him and us.
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