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Oh yeah, my daughter has Down syndrome...

Posted May 19 2011 12:16pm
I'd almost forgotten. Thanks for the reminder.

The night I got my amnio results, telling us Sofia would have an extra chromosome, I wrote her a letter. I wasn't worried about very much at all. In fact, I was only worried about two things: her health, and her Jewish education.

We are very lucky to live here and now. Massachusetts does a great job of providing services for Special Needs. Health care (not talking money, just actual care) is better than it has ever been.

And we have been lucky that Sofia really does not have any major medical issues. Her cardiac issues are minor and have never required treatment. She is monitored for Thyroid issues, but even that will be easily controlled once her levels get too high. She has the same vision as the rest of the family - nearsighted - but nothing astronomical. Hearing is excellent.

The public schools in our town are very good, and have done a great job in preschool of providing her with the support she needs. I know the elementary schools are also good.

Which brings us to her Judaic studies. Or lack thereof.

Obviously, if you know me or read me, you know that Judaism is very very very important to me and to our family. Jewish education, especially. I took Meah right after we were married, and all through my pregnancy with Sam, and through his first year. I continued...and continued... and continued. This is the first year since Fall of 1999 that I have not taken any classes. (And instead, I'll be teaching a class this summer!).

When my Meah classmate, Renee Finn, announced that she wanted to start a day school in MetroWest, I jumped right in. I was on the start-up board. I couldn't wait for my children to attend.

I have been so incredibly happy with the education Samuel and Micah have received. The Judaics are excellent, and the rest of the academics are fabulous.

So I have really really really been looking forward to having Sofia join her brothers and get the same excellent education, in both academics and in Judaism, that they have been getting.

Well.

It's May 19. Since we've known since she was born...or at least since she had her naming ceremony at two months old AT THE SCHOOL... that we wanted her to go there, I've been somewhat anxious to figure out how that is going to work.

Anxious. There's an understatement. Who is going to teach her? Who is going to drive her? Where will she get her special services? How will this all get paid for? Who will coordinate everything?

So.

This afternoon, we FINALLY have a meeting between MWJDS and Gateways, the Jewish Special Education organization in Boston. Finally. Because we've known for the past two years that we would really need to be working with them, but everyone has been dragging their feet.

So now it's May. Late May. There are less than 20 days left of school this year. Sofia is 6 years old. She will be going to Kindergarten in the Fall.

Somewhere.

When I look at the summary and associated costs that I JUST NOW received from Gateways, I just want to cry. "So, you mean it's really not feasible for a child with Down syndrome to go to day school? You couldn't have told me this...oh...6 years ago?"

(Actually, 6 years ago, I attended an event for the Jewish Special Education Collaborative, Gateways' predecessor, with baby Sofia in my arms, and was entirely heartened to know that one day she could go to day school. In fact, the principal at another school [too far away for us] said she was ready that year to accept a child with DS, to put a visible face on their Special Needs programs.)

I may be jumping the gun. We might still be able to make this work. But the proposal I just received talks about charging the family nearly $18,000 per year for services. And that's not including the tuition (which, by the way, is less than $18!).

So what do I do? Let Sofia go, and pull Micah out? Just say screw it, she's got Down syndrome, it's not like she needs to learn anything about her religion anyway?

(I'm not thrilled with either of those options, by the way.)

IF we make this work, great.

If we don't, what do I do? How do I continue to stay so over-involved and devoted to the school? And how the heck do I get Sofia a religious education? (For the record, I do NOT like our synagogue's religious school - there are some personal issues between me and the director, and our family just does not FIT there.)

This could all still work out. I will go in with an open and positive mind to this afternoon's meeting.

But MAN, it's like a slap in the face sometimes.
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