Don't Resent the Autism?
Again, there is a huge difference between types of autism.
And there seems to be no acceptable names for the myriad types.
There is the verbal kind, the less verbal kind, the minimally verbal kind, and the non-verbal kind. That divides them up into general categories, but does a lot less to tell you about them than you think.
Then there are the secondary diagnoses. How does OCD, anxiety, bipolar, Tourette's, ADHD, learning disorders and a host of other co-occuring diagnoses affect an individual's ability to function?
When you toss that salad together with the verbal differences, you begin to see some of the nearly infinite variety.
But now you add in personality. Easy going, hard nosed. Gets along with people/social (yes, our kids fit these personalities too) or more of a loner.
And our kids don't come into a vacuum. They are born into families with their own unique issues. And communities with varied strengths.
How good is the school system? Are they able to reach our kids at their level? Do they think our kids are unteachable? Do they support us as parents, rather than viewing us as adversaries?
How good are our social supports? Was our marriage on rocky ground before our kids came along or rock solid? Did our kids issues solidify or break apart what was already cracked? Single parents have my undying reverence, because I can't imagine doing this alone. But so many couples are joined on paper only and only one parent does all the necessaries. I would think that having a useless partner would be more of a burden than going it alone.
Do our extended families support our choices or undermine our efforts? Is there anyone to give us a break from the incredible stresses that come from dealing with a child who may: elope, be aggressive, be self injurious. Or is it just 24-7-365 with no reprieve in sight?
I've told you before that I meditate on that my child is happy, well and free from suffering. What tears our hearts as parents is that too often our children are not.
Our family went through a 9 month period last year when Nathan was NEVER happy. 17-18 hour days and waking in the middle of the night. He was in definite emotional pain. Was he in physical pain? He couldn't tell us. He hurt himself ALL THE TIME. He was bruised and bloodied every day. He couldn't even go outside the house because he would bolt and be extremely dangerous. His two siblings resented and feared him because of his aggressions. Now, most of the time, he is better. Autism is not the evil it was then for us.
But, for others, it does not get better. It just drags on and on, while they watch their children suffer, unable to help no matter what they do. We want our children to be happy and free from suffering. Many of us would die for them. We spend thousands of dollars on them for therapies. And we resent autism for stealing that happiness. Are we a little selfish, because we would like a little happiness for ourselves too? Of course, we are human! But mostly we just want happiness for our kids. And the feeling that the future holds happiness too. Not an unending onslaught of pain. And then horrible uncertainty after our deaths.
So, when you see a parent say "I would take a cure, if I could find one" I hope that you can understand. That you can extend your thinking out of your own experience, and imagine an experience where autism has become a thief of happiness. That what they are really wishing for is that chance to see their child free from suffering.
And there seems to be no acceptable names for the myriad types.
There is the verbal kind, the less verbal kind, the minimally verbal kind, and the non-verbal kind. That divides them up into general categories, but does a lot less to tell you about them than you think.
Then there are the secondary diagnoses. How does OCD, anxiety, bipolar, Tourette's, ADHD, learning disorders and a host of other co-occuring diagnoses affect an individual's ability to function?
When you toss that salad together with the verbal differences, you begin to see some of the nearly infinite variety.
But now you add in personality. Easy going, hard nosed. Gets along with people/social (yes, our kids fit these personalities too) or more of a loner.
And our kids don't come into a vacuum. They are born into families with their own unique issues. And communities with varied strengths.
How good is the school system? Are they able to reach our kids at their level? Do they think our kids are unteachable? Do they support us as parents, rather than viewing us as adversaries?
How good are our social supports? Was our marriage on rocky ground before our kids came along or rock solid? Did our kids issues solidify or break apart what was already cracked? Single parents have my undying reverence, because I can't imagine doing this alone. But so many couples are joined on paper only and only one parent does all the necessaries. I would think that having a useless partner would be more of a burden than going it alone.
Do our extended families support our choices or undermine our efforts? Is there anyone to give us a break from the incredible stresses that come from dealing with a child who may: elope, be aggressive, be self injurious. Or is it just 24-7-365 with no reprieve in sight?
I've told you before that I meditate on that my child is happy, well and free from suffering. What tears our hearts as parents is that too often our children are not.
Our family went through a 9 month period last year when Nathan was NEVER happy. 17-18 hour days and waking in the middle of the night. He was in definite emotional pain. Was he in physical pain? He couldn't tell us. He hurt himself ALL THE TIME. He was bruised and bloodied every day. He couldn't even go outside the house because he would bolt and be extremely dangerous. His two siblings resented and feared him because of his aggressions. Now, most of the time, he is better. Autism is not the evil it was then for us.
But, for others, it does not get better. It just drags on and on, while they watch their children suffer, unable to help no matter what they do. We want our children to be happy and free from suffering. Many of us would die for them. We spend thousands of dollars on them for therapies. And we resent autism for stealing that happiness. Are we a little selfish, because we would like a little happiness for ourselves too? Of course, we are human! But mostly we just want happiness for our kids. And the feeling that the future holds happiness too. Not an unending onslaught of pain. And then horrible uncertainty after our deaths.
So, when you see a parent say "I would take a cure, if I could find one" I hope that you can understand. That you can extend your thinking out of your own experience, and imagine an experience where autism has become a thief of happiness. That what they are really wishing for is that chance to see their child free from suffering.
Very well put! I get frustrated because I have one of each. I have one that I just want accepted because he is a wonderful young man and I have one that I would give an arm or a leg in order to have a "cure". Sigh. <3 <3
ReplyDelete