Education | blueberriesandgiggles

Below is an email I sent earlier today to the Brooklyn Speical Needs Parents group, which is an amazing support group.

Hi parents,

I’m starting to freak out about my daughter starting preschool in a few weeks. She is preverbal and has a rare disorder (Rett Syndrome) which presents a slew of challenges for her.

Her EI therapists have been like family and they’ve created so many successful programs for her and know how to work with her, challenge her (ever so gently – when she’s in the mood), calm her down, and, most importantly, mitigate her continuous physical and cognitive regressions (one of the many challenges of Rett). We are sad to see them go.

I’m planning on sending the school (WOC Midwood) an overview of her likes/dislikes, things to help calm her down if she gets agitated and an overview of key programs her therapists have been working with her on. I’m going to mail this in with her registration form.

I’m confident with the choice of the school. I’m just less confident about the first few weeks and how she will adjust.

Any advice, tips, tricks that you could share?

Additionally we are moving shortly before school starts so that’s going to be an adjustment in itself.

Many thanks in advance,
C, mom to L (who is likely less stressed about preschool than her mother)

How is it that she’s old enough to go to preschool already?!

Tomorrow is a very big day.

It’s the day that we discuss the kinds of special services Lily is going to need in preschool. I’ve already presented the district administrator (decision-maker) with a letter from the Rett specialist emphasizing the need for certain services. Thankfully he complied with much of what was requested. And he agreed to the preschool location, and to the classroom size. BUT. But…

There are additional things that MUST be put into her IEP (individualized service plan for those of you not familiar with special needs lingo) which have not yet been granted.

It pains me as a mother to push for my child to have hour after hour of therapy. I want her to enjoy preschool and to learn to socialize. I am grateful for the NY Early Intervention program she’s participated in these past (almost) two years but it definitely lacks in the social skills enhancement category. It is all one-on-one instruction (and for Lily, that means 30 hours of one-on-one instruction). Preschool is going to be fantastic for her as she is such a curious and smart little person and is definitely interested in others. But she can only take it so far as she can’t speak (yet). And she doesn’t have great hand use. So – imagine trying to have a conversation or bond with someone when you can’t talk or use your hands. My sweetie.

I digress. Where was I? Oh yes. Basically tomorrow I need to advocate for Lily to get A LOT of services. A lot. Which means that she will be getting pulled out of the classroom many times, on a daily basis, missing so much of the socialization (and beauty) of preschool.

I want my sweetie to relax and enjoy and not have to work so hard all the time. But I know that if we don’t keep up with all of her therapies (and then some), she will regress. We see it every few weeks when the therapists try to pull away from a program which Lily has mastered to get her to learn something new. A few days, or weeks later when we go back to the old program, she can’t do it. She has to be retaught. These programs are things like shaking a maraca, brushing her hair, going up and down stairs.

It is heartbreaking. But Lily always relearns it. Relatively quickly.

Hence the need for intensive, constant services. I wonder when, if, it will ever end for her. We’ve been so lucky with her therapists that they are so loving and kind and make learning fun (most of the time). I pray that this will continue through her school years.

I pray that we find a cure soon so she won’t have to struggle so much.

And please say a prayer (or send a positive vibe – whichever you prefer) my way tomorrow as I’m feeling really sad that this meeting even needs to happen.

Love,

C and L