Friends With FOP

Posted by Karen

Miranda will be starting kindergarten this fall, as I’ve mentioned before in this blog.  Yay!!  I’m excited about this, and really looking forward to it.  Miranda is too, which is good.

My little gal is excited about it for all the usual reasons – she’ll be a big kid, going to school with her brother, learning stuff, etc.  I’m happy about those things, but there’s an additional bit too…  When Miranda was first diagnosed with Fibrodysplasia Ossificans Progressiva, I seriously wondered whether she’d be able to do any “normal” things.  Of course, I learned that she definitely can – just maybe with some modifications.  Still, everytime we start a new activity, that knowledge doesn’t stop me from having sort of a “giddy” feeling, a bubbling-over joyful emotion at the thought of my sweetie being able to do what other kids do, and maybe even thriving at it.  I felt that way when Miranda was successful at daycare and preschool, when she took “kindercooking”, when she took a dance class and now with her current singing group.  School will be the biggest such adventure of all…

These thoughts are at the forefront for me right now, because about a week ago, Pete and I had the first meeting at the elementary school to plan for Miranda starting kindergarten.   Our meeting was set for 9:45 AM, just as the group of teachers, etc were finishing up with the parents of one of Miranda’s classmates-to-be, a child with neurofibromatosis.  As we entered the room, that child’s mother (a friend of mine) told me with a wink that I’d better be able to spell Fibrodysplasia Ossificans Progressiva, ha ha.   

There was a group of about 10 people at the meeting other than Pete and I, which I found kind of amazing.  However, every person present had an important reason for being there, and something to contribute – including the principal, district psychologist, district OT, district physiotherapist, school nurse, one of the current kindergarten teachers, and a few others. 

The meeting was just an hour long, so we had to pack a lot into it.  The planning group started by asking what our goals are for Miranda, and then asked us to describe the basics of FOP and what the main concerns are in a school setting.  Our goals…  Well, that was a pretty simple one.  We said we want Miranda to enjoy school and have the opportunity to stretch her mind, especially since stretching her body is, well,  not in her future.  Our wish for both our kids is for them to get the most out of school, and work to the best of their abilities.  In Miranda’s case, however, academic learning will be extra-valuable, since FOP means she won’t be able to more physical work and activities.  We think Miranda is a bright girl, so we told the group that we want Miranda to have every learning opportunity in the world.

Of course, school isn’t just about academic learning…  Students also have phys-ed, recess, and socializing with their peers.  These are the areas in which FOP will be more troublesome.  Take phys-ed, one of the biggest concerns.  Due to FOP, Miranda can’t take part in the more vigorous, athletic activities.  Phys-ed will have to be modified quite a bit for Miss M, but we DO want her to be able to participate – that’s an important part of school.  In fact, someone at the meeting, I can’t recall who, raised an innocent question about whether Miranda should be exempted from phys-ed due to the risks of her falling and provoking further FOP flare-ups.  Before Pete or I could give our thoughts on that, however, a couple of the district people stepped up to say that no, that wouldn’t be necessary, and that the phys-ed curriculum could be appropriately and effectively adapted for Miranda.  They knew this, as it happens, because they have experience with that other Vancouver-area child with FOP, a boy who is now about 13 or 14 years old and HAPPENS to live in Burnaby (though not in our area)…  The OT and physiotherapist in particular knew from their experience with him that they’d be able to work things out for Miranda.

Aside – it’s tremendously lucky for Miranda that this other child with FOP is in the Burnaby school system.  Most teachers and school officials dealing with a child who has FOP are doing it for the first time.  I wish I knew who something more about this family; I’d love to give them a big ole’ hug for just being there and smoothing the path for Miranda.

Apart from phys-ed, the other big concern is safety in and around the school.  There’s an awful lot of cement in the schoolyard, and lots of potential for traumas which stir up the FOP beast.  To that end, Miranda will most likely have an educational assistant (EA) assigned to her some or all of the time that she’s in school.  We view this as a necessity, at least while Miranda’s young, to protect her and keep her safe.  However, this is a tricky thing…  We stressed to the planning group that an EA will need to strike the right balance between helping Miranda and guarding her where she needs it, while not making the mistake of thinking she needs extra help with her schoolwork as she would if she had a learning difficulty.  I expect there will be some tinkering and getting adjusted which will happen on this front in the first few weeks of school.

Anyway, Pete and I were very heartened that the teachers and school officials involved in planning Miranda’s kindergarten experience were so positive about everything, and so determined to get Miranda off to a good start.  We came out of the meeting feeling optimistic about how it will all work out.

Look out school, here I come!