(no subject)

[lollardfish]

Nicholas 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.

Comments

[mia-mcdavid.livejournal.com]

Balancing expectations and desires is a tricky game.

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.

[lollardfish.livejournal.com]

That's not at all what Illinois social services said when I talked to them. Maybe it's changed. We'll find out.

[mia-mcdavid.livejournal.com]

Oh, change can be good. Change can be *very* good. I hope so.

[lollardfish.livejournal.com]

It's clear from talking to people in Illinois social services that Nico will be fine in the early intervention program until he's 3, and by then we'll know if Chicago will work out for us.

[mia-mcdavid.livejournal.com]

Well, see, like I said. It won't be an issue for a while; you should be able to find good, appropriate schools, and child care won't be too much different for him, I expect, than for a typical--it's not right now, after all. You'll certainly be fine while you get your career legs under you.

[ferrousoxide.livejournal.com]

It's really great to read your posts about this; your positive outlook does wonders for my sense of humanity as a whole.

[gerisullivan.livejournal.com]

You are an exceptionally wise parent.

Really. You're two months into it, and already you have the knowledge and perspective many parents are lucky to gain after a decade or two, and that others never do.

And you can articulate it, too. That's so cool.

Happy two month birthday, Nico! I hope to be with you when you see your first Red Sox home game. Little green monsters and all.

[creidylad.livejournal.com]

I love you, but guess what? These aren't just the fears of a parent with a disabled child.

I fret exactly as much about my "regularly abled" child as I do about the other.

I don't mean these words to at all belittle what you're feeling, as you well know -- I just want you to know that this isn't unique to Holland. They have these fears in Italy, too. Every parent has hopes and fears and expectations for their child-- and guess what, every parent ends up surprised in the end, maybe a little dissapointed on some fronts and then gloriously surprised on others.

I'm so glad you guys are in a situation where you have choices. I truly can't wait to meet Nico. He sounds like a wonder.

[alisgray.livejournal.com]

truly, after I was born ass-backward, I hear that my parents were told I might well never walk. this surprised me very much to hear. I think I was 13 and had been walking for sometime.

it worried me a lot more that according to the mid 1970s rhetoric, you and me and every child in the free world had a quite fair shot at becoming president, and I didn't seem to be even close.

of course until last year I wasn't old enough to be elected anyway. so who knows.

[mizzlaurajean.livejournal.com]

All parents should take this apporch because the truth is with a new baby all sorts of strange developmental things can pop up along the way. Even kids without DS are going to encounter various issues at some point some more then others depending on one hundred + factors of how their environment responds to their needs.

Thus far Nico seems right on target. He's quiet but he's also cooing. Like I was saying last night if all family's and kids got the kind of services you guys have been plus had parents who were as attentive and eager to provide everything possible for their child all chidren would be able to maximize their potential and that is all we can hope for for any child really.

Dream big because then Nico will too.

[cakmpls.livejournal.com]

Yeah. All that. Well said.

We've always tried to set our expectations and desires to the same goal: they will be who they want to be and achieve what they want to achieve.

And you just never know. The one who never wanted to try anything new has traveled alone and eaten weird foods from street vendors in third-world countries. The one with the most physical disability is the only one who has ever played a team sport (in an adapted-sports league in high school). The one who couldn't read till age 8 went on to love to read, while one who read earlier never liked it; another one who always read well doesn't read for pleasure, while the one with a language processing disorder loves to read. The one who hated school loved college and is thinking of grad school, while the one who liked school wouldn't even consider college. The one with no mobility impairment didn't learn to drive till age 20; the one with almost no active range of motion in her elbows got her license on her 16th birthday. You just never know.

[lollardfish.livejournal.com]

Your family is neat.

[chirosinger.livejournal.com]

I'm so glad that Nico has you two as parents. He's going to grow up in a wonderful environment with great support. I'm glad he found his way to your family. Yay for your first two months together. Yay for all the years yet to come. There will certainly be challenges, but think of all the wonders too.

what 'becca said.

[bodi-kat.livejournal.com]

You guys are awesome, and i'm fairly certain that's why Nico chose you to be his parents.

You may well meet new challenges on the way, but trust that things will work themselves out.

*hugs*
Bodi

[smellingbottle.livejournal.com]

I misread this initially as being about your son watching something on his mobile phone, and had, somewhat baffled, constructed a complex theory about this being a new form of stimulation therapy for babies with Down's Syndrome, before remembering that in your part of the world mobiles are dangly things that hang over cots, rather than cellphones.

Less flippantly, I very much enjoy the honesty of your posts about your son.

[lollardfish.livejournal.com]

Oh what a great theory though!

Babies do love cell phones. Bright lights. Buttons they can push. Sounds to make. We used to get calls from the 1-year old that Shannon nannied all the time (she was on speed dial). Shannon's sister, in the meantime, works for Verizon Wireless (a US mobile phone carrier), and has saved old phones to give to Nicholas when he's a little older.