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A Cerebral Palsy Update

It’s been a while, hasn’t it? I haven’t talked much about CP around these parts lately. It’s not that I don’t WANT to, it’s that I try to paint this pretty little persona that I have everything under control, or that I complain waaaaaaay too much on my blog (I’ve been told that I don’t complain as much as I think  I do… We’ll see!)

There’s a few things rolling around in my brain lately. I’ve realized that it was easier to explain Jillian not walking when she was 2. It’s harder when she’s 3. When she was 2, I would hear from other parents “Oh! it’s ok!  my kid was a late walker too!” Well, that’s awfully reassuring and all, but to be honest, we don’t know if she’ll ever walk without some sort of equipment. Some days I take the time to answer questions, some days I just smile.

It’s been getting harder and harder to watch Jillian watch her peers or children younger than she is, running and walking without a care in the world. I too, look fondly at toddlers, starting to walk, wishing that it would be just that easy for Jillian. She realizes that kids her age don’t only crawl (primarily) and corrects anyone that calls her a baby. (As she should).

Jillian is still making gains at physio. Especially great news since her last round of Botox injections wore off around a month ago. We just finished a fairly short block with OT (how her sessions work: Jillian has a series of weeks, usually 6-8 with OT, then another 6-8 week break.) we’ll continue with OT in April. I wish we could have added some extra weeks since she missed a bunch from being sick. Before OT ended, we were working on pre-printing skills and spoon feeding. Oh so much fun!

Speaking of pre-printing skills, this last update is the one that has me so stressed and confused, and perhaps a little conflicted as well.

From the beginning, I was adamant that Jillian would go to public school. Preferably the one Lauren attends now. Not that many of the special needs children are segregated, but I’ve always wanted her to be as ‘normal’ as other kids.

A few months ago, Jillian’s PT planted a seed in my brain. She told me she’d be the perfect candidate for the Bloorview school. It’s still an integrated class, but she would receive all therapy at school, whereas the public school she probably wouldn’t get much, and we haven’t had much luck with the agency that would provide services. Basically, it would be all on my shoulders. (Not that I’m not doing it now!)

After approaching the Bloorview school and I was told that they don’t do tours until we’ve been accepted, I was caught in a rock and a hard place. I feel like this is a HUGE decision to make and I want to make the right one.

Adam and I decided we would enroll (or at least start the process) at both schools. The secretary at Lauren’s school said I needed to make an appointment to speak with the principle… that they weren’t sure if they could handle Jillian’s needs.

During my brief chat with the principle, a few things stood out. Once I stated her diagnosis, the principle replied “OH! I think my brother had that! How do you spell it?!” Wait. Think? And you can’t spell it? Wowzers. She then said that since there aren’t any stairs at the school, Jillian should be fine. I mentioned she would probably qualify for an aid and she said “oh? really? Why?” I really wanted to say something like “well… this whole not walking thing is kind of important” Ugh. I don’t think this was a good omen!

Cross your fingers for us, Jillian’s next botox appointment is on February 15. We’ll be targeting the same muscle groups as her first time. Her calves and hamstrings. This combination what allowed us to see flat feet in the first time in almost 3 years!

So… there’s my update. What’s new with you??

Comments

  1. Kim @ Whats That Smell? says:

    Ok now I get the principal thing…on FB the whole thing didnt come across fully. She be an idjit.

    Good luck with the next round of Botox, I love watching the videos of her after.
    Kim @ Whats That Smell? recently posted..Angry notes

  2. Our first interactions with our local school was not great but they have turned out to be just wonderful, going above and beyond for J. Bloorview would also be wonderful for Jillian. I think both options could be good choices for her.
    Jillian is a smartypants and is going to thrive wherever she goes!

  3. I will just yeah that to what Lisa said. Sure the principle may be dumb right now but everyone has to learn and if they are willing to then that is a good thing.
    Nolie recently posted..Best Friends (Wordless Wednesday w/ Linky)

  4. Yay for flat feet! :) That’s wonderful! Praying for y’all as you look at schools. I know she will wind up just where she needs to be.
    Mandy- Mommy Cracked recently posted..Your Wife Wants To WHAT??!!

  5. Trust yourself on the school decision.

    Here’s a post I wrote on walking:
    http://www.therextras.com/therextras/2009/10/define-walking-.html

    A few posts preceding this one are about standing. I known a few teens who crawled around their homes. It is a tough habit to break and very socially isolating.

    I’m a big believer in braces on the feet (not so much AFOs) but for the feet. I know a few Canadian bloggers but Canada is large and I don’t know my geography well….if you want to know other bloggers whose children have CP – leave a comment at my blog.
    Barbara recently posted..Comic Relief

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