Friday, September 24, 2010

Murphy's Law

There are enough things that have gone wrong right now, and I don't particularly like blogging about the bad stuff. Lilly's original NYC school situation being awful; every evaluator and IEP person only seeing the negatives in Lilly and completely underestimating her; every good private option is full; a few bad private options available but that we aren't considering; and a "special" school available for Lilly that wouldn't even be an option until mid October. (And while we're considering it because we are so low on options, "separate but equal" just isn't the right choice for Lilly in her preschool education.) A special ed preschool teacher has been coming to the house all week to spend time with Lilly, but a few hours of just intense teaching has been very draining on Lilly, and it's not the right answer either. Children, at the age of 4, should be learning through play, playing with friends, enjoying their day, and just being kids. Whether the "special" school or the special ed teacher, those are just boot camps for learning, and it's just not appropriate. It's not the least restrictive environment, which is what she is entitled to under the law; it's the exact opposite of that. And in the past week we've gotten in touch with a number of families in NYC that have a child with DS and their experience hasn't been very different than our own. Many of them have even ended up suing the school district to get access to an appropriate educational environment for their own child. But for us, with 9 months left, our options are limited, besides just going out and looking for more potential schools.

*Sigh.* So that's where we are. It's been incredibly frustrating for Jon and I, as we just want the best for Lilly. And despite everything I see such a beautiful sweet little girl and feel so lucky that she's mine, and know that we can't give up - we are her advocates, her parents, and if we don't stand up for what is right and just and fair and appropriate, obviously no one else in NYC will.

Lilly has never had a problem in school; quite the opposite, most of her teachers have said she's been their favorite child in the class. She's always made friends easily, and those relationships have been so special to witness. She is such a good learner: she is motivated by seeing what others are doing, and wants to be part of the group. She is bright and intuitive and knows right from wrong. She has a passion for learning new skills and is so proud of herself when she accomplishes something. She is a little girl who loves life and is eager to be part of the world around her.

So it makes me sad that Lilly doesn't have a place in NYC where she belongs yet. And it makes me sad that she doesn't have a friend here; that has never been her weakness. In New Zealand no matter how lonely we were for our friends and family back home, the year was a success because Lilly had an amazing time. And aside from Lilly's situation, it is hard (and somewhat ironic) that not only have Jon and I not really met friends here, but that every person I meet that's my age is a therapist or evaluator or educator who is telling me what is wrong with my child. *Sigh again*

But the good thing about us is that we're not discouraged or letting this affect our life and our love for each other. Lilly, in my opinion, has learned more from the past month of being out of school than she's learned in being in school. She's still my lovable funny little girl and we have a great time no matter what we do. And Jon and Lilly are partners in crime as always; last night he took her to the park after dinner and at 8:30 when it was pitch black out I called to check on them, and they were at the ice cream parlor; and last weekend they went to the Lion King on Broadway, to a Met's game, and to Coney Island. Next week we had originally planned on going to Disney World for the weekend, and now it looks like Miss Lilly will get to stay the whole week with her grandparents - did she plan that or what? And the biggest benefit is the time Lilly has gotten to spend with her grandparents, cousins, etc.

I am frustrated but grateful; I am separating the injustice of the NYC education system from the amazingness of my child. It will all work out, somehow, because of who Lilly is, and because of her we will figure out a solution. She deserves the best, and as her parents we will provide that.

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