9.12.2014

Out into the world! (Or kindergarten)

Sophie has been on her full-time school schedule for 3 days now. I didn't want to update until everything was settled. For those whose school year doesn't start with bureaucratic shenanigans- lucky you. This year was made especially fun by the fact that we now have 3 school aged children who attend no less than four different schools! It feels like I have kids all over town.

So now that stacks of forms have been filled and submitted, countless emails and phone calls performed, buses and transportation figured out and special instructions typed up I can finally sit down and reflect on Sophie's start on her newest big-girl adventure.

While Sophie is developmentally delayed, she is advanced in her community involvement compared to her siblings. They didn't attend as many classes or schooling at 3 (her sister did do a nursery school, her brother did not). They didn't attend their first summer camp until they were 5 or 6 years old. And when they started kindergarten it was still part-time in our province. My son didn't take a school bus until he was in grade four, my daughter is yet to take it (next year). But Sophie at four years old is a veteran of all these things and she is coping like a champ (much better than her siblings would have, I can tell you that).

While I would have worried incredibly about how anxious my older children would be about going to two different schools, taking a bus at lunchtime and then coming home after a full day, I was significantly less worried about how Sophie would deal with it. Never one to be prone to anxiety I had a feeling that once she learned the routine she would love her busy days and the 3 bus rides. So far it seems like I was right.

There are no problems getting her out in the morning. She runs for her bus flapping and smiling. When I get her off the bus at home time she is smiling too. The teachers are doing an amazing job communicating about her days either through emails or through her communication binder. I am especially impressed how committed the kindergarten teacher is to her communication device - when I check the history at home I see that Sophie has access to her talker pretty much all afternoon! (Wow). In the morning it is not as much but I know they do more OT and PT there (the therapies were the reason we kept her in that preschool another year) which is also important for Sophie. And she sure loves running around in their gym!

And I have a bit more time at home. Close to the end of summer I felt really overwhelmed with the state of our home, four kids in a small space and no down time, ever. With my husband working out of town these past few months (on and off), things have been very busy and chaotic at times. Now that the kids are in school and Felix naps in the afternoons we settled into a fun routine of an outing in the morning (playgroups, park, errands, etc) and housework in the afternoon as he naps. Our home is back to normal and I feel much calmer. I've been cooking more and am refreshed when the kids come home. I'm also planning my own education future, researching some online courses to take and hoping to apply in the spring for a Communications Disorders Assistant program - a dream long in the making.

One last update. We met with the geneticist at the beginning of the month. For a year we have been awaiting the confirmation of whether Sophie has the genetic mutation they were testing for, MPPH syndrome (very dry medical texts only. This syndrome is so new and so rare there are no glossy awareness websites yet). Well the results are back and she does indeed have the mosaic version of the syndrome. Mosaic meaning that only a percentage of genes are mutated, which lessens the severity of her disability. We will have some medical tests to check for conditions which are sometimes associated with this gene (not the syndrome specifically, just the mutated gene) but other than that, this condition is so recently discovered, there are no long-term studies that could give us any relevant information. All the children that we know diagnosed with it are around Sophie's age or younger. The risk of seizures remains our biggest worry.

And so now you are up to date with Sophie's comings and goings. I am very proud of my big brave cheeky girl.

I wonder if that's how she sits at her school desk...

 

 

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