Categories: AutismCordy

The Changes Keep Coming

It’s almost ironic that the one person in our family who is the most resistant to change (Cordy) is the one who has to endure so much change.

After nearly settling into her routine at her new preschool, we’re changing her again. She will still be in the same room, and still have the same teacher, but she will be moved to the morning class.

We’re not just doing this for the fun of it. In fact, I’d rather not do it, because she’s now well liked by her classmates, and it’s likely she notices them as more than just the background, too. But there’s one big problem hanging over the situation: she’s exhausted by the afternoon. Cordy wakes up around 5:00AM every morning, no matter how we try to adjust her schedule. Putting her to bed earlier or later doesn’t change the time she’s up for the day.

Taking her to class each day, I have to struggle to drive while also playing 20 questions to keep Cordy awake. It works about half the time. Either way, she has trouble giving her full focus to school because she’s so tired. They have lunch first in class, which is actually Cordy’s second lunch, since she has breakfast at 6:00AM and wants lunch by 11:00AM. Being tired also increases the chances of a major meltdown substantially.

Two weeks ago, her teacher mentioned that a boy was leaving the morning class, and maybe we should consider moving Cordy into that space. I completely agreed.

So next week, Cordy’s routine will change again, and she will face an entirely new set of classmates. I hope these new kids will be as accepting of her as her current class is. A couple of the kids in her current class really like Cordy, and go out of their way to cheer her up when she’s crying. Will she miss them? Will there be kids like that in her new class?

And then, yesterday a note came home in Cordy’s backpack from the school’s physical therapist. She said that she has been watching Cordy, and thinks she needs an official gross motor skills evaluation based on what she’s seen. She noticed Cordy has difficulty with awareness of where her body is in space, and she seems to have poor motor planning. A form was enclosed, asking for my signature to authorize an evaluation.

I’m not sure how I feel about this. Sure, she’s clumsy. OK, she falls down a lot, often because her feet can’t keep up with her. And she runs into things a lot because she’s not paying attention. I guess I didn’t see that problem. I’m a little down about this – you don’t want anything to be wrong with your child, but then once there is something wrong, you don’t want to find out there might be more wrong.

I read Amalah’s post about Noah’s evaluation today, and had tears in my eyes, completely understanding how she feels. Especially when she wrote this:

He toe-walked the entire time…something we thought he’d more or less outgrown…and at one point he wobbled and fell over while standing completely still. His speech therapist said she’s seen him do that before. I bit my lip and tried not to cry, because my God, I never noticed.

I’ve preached and clucked that sometimes, the single best thing you can do for your child is admit that something is wrong. Today I had to put their checklist where my mouth is, and I didn’t like it.

I felt much the same yesterday when I got that note. I never noticed Cordy’s physical problems because I was so focused on her behavior issues. I waved off past evaluators when they asked about motor skills, saying as far as I knew she was a typical kid in that regard. Now I must look more closely and admit that maybe something is wrong.

If the physical therapist finds a significant delay, we’ll add gross motor skills to her IEP and she’ll begin physical therapy along with her occupational and speech therapies. More changes for all of us.

It can be so overwhelming sometimes, and it doesn’t help that this past week has been a bad one for Cordy. Lots of acting out, lots of meltdowns, lots of repetitive behaviors and zoning out. It’s been maddening, and while I love her with all my heart, I confess that sometimes I don’t like her very much.

I hate admitting that, but it’s true. I love her quirks, her humor, her amazing view of the world, but I tire of the negative side that comes with it. Sometimes I want to scream, “Why can’t you act like other kids? Why can’t you just be…normal?” (But I don’t, of course. And the word “normal” has been banned in our house.)

Does that make me a bad parent? I certainly hope not. Because few little girls could have parents so devoted to making sure she gets what she needs.

Christina

Christina is a married mom of two daughters from Columbus, Ohio, and has been blogging at A Mommy Story since 2005.

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