(no subject)
Mar. 8th, 2007 07:00 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lollardfishNicholas Perry was born two months ago today. These have, without a doubt, been the fastest two months of my life.
Right now, he's in his crib behind me, watching his mobile (little green monsters in Red Sox uniforms) turn. The fact that he can focus on the mobile and make cute little grunting noises of excitement is as good evidence as any of how well he's doing.
I think about his disability every day, especially lately. I called HR offices at the two colleges that offered me jobs, I called disability services in Illinois, I call all sorts of people, and I say, "I have a disabled child," just to break open the conversation. On my on-campus visits, I told people, because these are small departments (5 or 6 people with me), and I need to feel comfortable with them and them with me. Nowhere was it a problem or did I sense anyone feeling uncomfortable, although as parents, all know that there is still some sadness. "They say that they are very sweet," said one senior colleague, meaning it in the best possible way.
At any rate, I talk about it all the time. But, in fact, I know nothing of what it is actually like to have a disabled child, because we are intensly fortunate. It's one thing to be told those horrible words, "Your child has Down's Syndrome." I've written about what that was like. But the next difficulty will be when Nicholas encounters some challenge that he cannot overcome, or that he cannot overcome without extreme difficulty. I don't think it will be walking, because he's physically right in the middle of "typical" growth ranges. He's strong. He's coordinated (for a two-month old). Will it be talking? Will he learn to talk well, or will it be slurred and difficult to understand? Will it be reading? Math? Driving? Hang-gliding? It's not that I obsess about his progress; I would, but there's no point. Given his physical abilities, we revel in his successes and learning abilities thus far. But he is a little quiet; but, he might just be quiet (personality wise). If we didn't have DS, the fact that he was quiet would not make us afraid of his learning to speak, but just glad we had such a sweet child.
Someday, though, there will be a barrier that he cannot break through. If we're lucky, we'll find away around it, together. But around it is different than through it. We'll see.
In general, though, the thing that we focus on is how well he's doing. He's doing so well that it's easy to find oneself drifting out of the realm of a parent of a disabled child to just the realm of any other parent. To dream of education, sports, language skills, and all the things we'd like to dream of. We have to be careful, there. We must leave open all doors for Nicholas to walk through. If we assume he has low potential, he'll have low potential. We believe he'll be able to do anything; anything. But we must, also, be ready for a different reality or risk injuring ourselves, and him. Balancing expectations and desires is a tricky game.
Right now, he's in his crib behind me, watching his mobile (little green monsters in Red Sox uniforms) turn. The fact that he can focus on the mobile and make cute little grunting noises of excitement is as good evidence as any of how well he's doing.
I think about his disability every day, especially lately. I called HR offices at the two colleges that offered me jobs, I called disability services in Illinois, I call all sorts of people, and I say, "I have a disabled child," just to break open the conversation. On my on-campus visits, I told people, because these are small departments (5 or 6 people with me), and I need to feel comfortable with them and them with me. Nowhere was it a problem or did I sense anyone feeling uncomfortable, although as parents, all know that there is still some sadness. "They say that they are very sweet," said one senior colleague, meaning it in the best possible way.
At any rate, I talk about it all the time. But, in fact, I know nothing of what it is actually like to have a disabled child, because we are intensly fortunate. It's one thing to be told those horrible words, "Your child has Down's Syndrome." I've written about what that was like. But the next difficulty will be when Nicholas encounters some challenge that he cannot overcome, or that he cannot overcome without extreme difficulty. I don't think it will be walking, because he's physically right in the middle of "typical" growth ranges. He's strong. He's coordinated (for a two-month old). Will it be talking? Will he learn to talk well, or will it be slurred and difficult to understand? Will it be reading? Math? Driving? Hang-gliding? It's not that I obsess about his progress; I would, but there's no point. Given his physical abilities, we revel in his successes and learning abilities thus far. But he is a little quiet; but, he might just be quiet (personality wise). If we didn't have DS, the fact that he was quiet would not make us afraid of his learning to speak, but just glad we had such a sweet child.
Someday, though, there will be a barrier that he cannot break through. If we're lucky, we'll find away around it, together. But around it is different than through it. We'll see.
In general, though, the thing that we focus on is how well he's doing. He's doing so well that it's easy to find oneself drifting out of the realm of a parent of a disabled child to just the realm of any other parent. To dream of education, sports, language skills, and all the things we'd like to dream of. We have to be careful, there. We must leave open all doors for Nicholas to walk through. If we assume he has low potential, he'll have low potential. We believe he'll be able to do anything; anything. But we must, also, be ready for a different reality or risk injuring ourselves, and him. Balancing expectations and desires is a tricky game.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2007-03-09 02:00 am (UTC)Yes.
A word of warning, here. Minnesota has abundant support for people with disabilities; Illinois has approximately zero. It won't be an issue while Nico is small; you'll love him, nurture him, send him to school, and I'm sure there are some good schools for him. But any private therapies will be on your insurance or out of pocket, and when he's older, the kind of assisted living arrangements that are available in Minnesota pretty much don't exist in Illinois, or they didn't when we were looking around and thinking of Tom's future. That's why we're here.
Just so you know.
no subject
Date: 2007-03-09 03:27 am (UTC)no subject
Date: 2007-03-09 02:14 pm (UTC)no subject
Date: 2007-03-09 02:54 pm (UTC)no subject
Date: 2007-03-09 03:22 pm (UTC)