10.07.2013

Much ado about everything

I think it is time for a little update on Soaps. I update Facebook frequently but Sophie has been a busy gal this past month and it'd be good to have it all recorded in one place.

First of all, school! Sophie started her preschool and is loving it. I don't think I can adequately convey my relief at this. Every morning (including weekends) she is anticipating her "buh" (bus). By her teachers' accounts she is happy, engaged, cooperative (reasonably) and tries things she never did at home. She has been playing more with toys, especially sensory-type toys. For a long time she didn't show any interest in holding anything in her hands (other than food) so that is progress. She joins her classmates at snack table and at circle time... In other words, pure amazingness.

Then, ABA group. For Facebook fans, I'm sure you remember my hand-wringing and belly-aching over ABA being scheduled at her nap time. Completely unnecessary. She is a bit drowsy after but LOVES her ABA (I thought it wasn't possible!). It is a PECS-focus group and baby girl loves her some PECS. This is what I posted on Facebook after her first day:

So I decided that I will never worry about Sophie again (I'm joking of course but anyway)

Today as you know was the dreaded "ABA at nap time" that I've been stressing about for the past week. My poor baby was going to not only be denied her afternoon siesta but forced to learn at the same time. I couldn't eat all morning.

So we got off the highway about 5 minutes away from the centre and she fell asleep. "Great" I thought. We got in, I carried both babies in, Sophie slumped over my shoulder. As we were walking to the room she woke up. The room-tiny! With four therapists and four kids including one poor fella who was screaming his little head off. Crowded chaos in other words. I think my face said it all. "I can't leave her in here!" So they gently suggested I put her down and see "how she does".

I put her down expecting I don't know what. Her running for the door maybe. She deliberately walked over to this screaming child, right in front of his therapist who was futilely trying to engage him, grabbed the huge PECS binder that was lying on the table (full of pics of junk food, but I digress) looked at the plethora of sweets apparently on the menu, picked off skittles and smarties and handed to his teacher completely unfazed!

I went to fill out some forms (what else?) and on my way out I peeked in again. She was "talking" with the therapist. We stayed in the neighbourhood so I also spied her playing at the centre's cool playground a bit later on.

She was fine! More than fine, she might actually learn something I gotta stop underestimating this kid...

Last Friday we had 2 ladies come for a home visit regarding evaluating Sophie for AAC technology. It is a rather complicated process but basically means that it is funded by the government if child is proven eligible. She was recommended by her speech therapist last spring when we found out she has Polymicrogyria. So they came, explained the program, oohhhed and aaahhhed over the visuals we have hanging all over our apartment, Sophie showed them she can open binder and request blueberries (she isn't one of those kids that go out of their way to disprove everything mom was just saying - thank goodness). It seems like a low-risk option, there are no contracts or exclusivity clauses - we are free to purchase any tools we see fit for her while under their program. However, going along with them will give Sophie access to a variety of devices to try, which we wouldn't be able to do on our own. They seemed experienced and kind, supported my interest in literacy, and I think we will be able to work well together. Best part, they will now integrate with her school and her ABA group and we will all meet together and brainstorm ideas for Sophie's first device.

On the medical front- we met with the geneticist and it was interesting. She is familiar with the team in Seattle specializing in Polymicrogyria research and the genetic disorders associated with it. She put us in touch and they mailed us a saliva collection kit for us (parents) and Sophie! So fun... They are looking to check if she has one of two specific disorders MPPH or MCAP. It doesn't really mean much, they are both so rare and there isn't a whole lot of information a diagnosis will reveal that we don't know already but yet, another puzzle piece in place.

We are going to see the neurologist this week and that should be interesting as well. Few things I'm hoping to speak about. Oh, and Sophie will have a lot of dental work done, poor thing. And I'm buried in forms. And still waiting on subsidy. And have that feeling I'm forgetting something important... always. And I have 3 other kids with their own appointments and forms and classes. And sometimes I like to sleep and eat and all that stuff. Sometimes. Man, I got tired and overwhelmed writing all that out.

Megalencephaly doesn't sound as cute as it looks

 

 

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...