FOP and school – 2015

Posted by Karen - September 13th, 2015

My kids are FINALLY now back at school. It feels like we were the latest in North America – where we live, school began the Tuesday after Labour Day, which was September 8 this year. Although there was much protesting at our house, I think both kids were secretly glad to be back at school.

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The first day of school “look”.

As a parent, I like the beginning of the school year, but my daughter’s fibrodysplasia ossificans progressiva always poses its own set of challenges. In a nutshell, there are 2 important issues – safety and accessibility. Re: safety, Miranda needs to avoid traumas as much as possible – traumas, even fairly minor ones (e.g., trip-and-fall accidents, bumping into furniture or other kids, stumbling and straining a muscle) can cause FOP flare-ups and new bone growth. Re: accessibility, Miranda’s main issue is lack of arm flexibility – she can’t reach things across tables, put her hand up in the air to answer a question, or adjust her own clothes and shoes.

Because of these special needs, the school assigns an educational assistant (EA) to help Miranda. The EA is there at the beginning and end of the day, and at all transitions to different classrooms. As the school year gets well underway, it all becomes a pretty well-oiled machine, and we’ve yet to have any significant problems. I’ve always got a bit more stress at the beginning of the year, though, out of worry about transition back to the school routine.

Now luckily for the safety issue, Miranda has been for the past few years in a special program – they learn some Mandarin language and culture – with the same kids, who know her and her limitations. Further, it’s been a small group – just 13 kids in her class last year, which was great from a safety point of view. But this year, suddenly we have a difference… This year, Miranda’s grade 5 group will be part of a grade 4/5 split class. This means we have about 15 new kids in room who don’t know Miranda very well. Really, this is a double concern re: safety – first, more kids means inherently more risk of trauma, and second, the grade 4 kids won’t think to take that extra degree of care which is second nature to the grade 5’ers.

Because of this, I’m actually planning on doing something I haven’t done since my daughter started kindergarten… I’m going to write a letter to parents to tell them about FOP, and will ask the teacher to send it home with each kid. In the letter, I will ask each parent to have a short discussion with their child about why it’s important to be extra careful with Miranda and help make sure she doesn’t get hurt.

Will doing this remove any risks 100%? No, of course not. But, it just may help a bit, and it could be just enough to make a difference…

 

PS –

1. If you or your child (age 6 and up) has FOP and a new flare-up on an arm, shoulder, leg or hip, consider taking part in the Clementia Pharmaceuticals’ Phase 2 trial of the potential FOP drug Palovarotene. It does involve some short-term travel to one of the testing sites (Paris, Philadelphia or San Francisco), but Clementia covers all travel and accommodation costs and makes the travel arrangements – even if you have special travel requirements due to the nature of your FOP. Clementia is also carrying out a Natural History Study of FOP patients, and pays transportations costs to take part in that as well. For information about how to participate in either of these studies, go to the IFOPA website at: http://www.ifopa.org and watch the rotating banner at the top.

2. The IFOPA has started an FOP patients registry. This registry is expected to provide vital information to FOP researchers as time goes by. To participate, see the IFOPA website (link noted above).

 

One Response to “FOP and school – 2015”

  1. Jenn says:

    Miranda is a brave girl and so loved by her peers. I think the letter is a wonderful idea. As a parent I would want to know about all the kids in my sons class and their needs, especially if it could help us to avoid physical injury.

    You have always amazed me Karen and have always made us aware of FOS but made Miranda feel it was nothing big, nothing to hold her back.

    Thanks for sharing her with The Grove.



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