School and FOP

Posted by Karen - January 24th, 2010

Pretty soon I’ll be registering Miranda for kindergarten…  Wow!  My girl is getting so big. 

Kids with Fibrodysplasia Ossificans Progressiva have a variety of different experiences with school.  A lot may depend on the age of the child when FOP became symptomatic and was diagnosed (hopefully soon afterward, but it doesn’t always work out that way – a whole other story). 

If the child is diagnosed with FOP at a young age (ie, pre-school) as Miranda was, then parents need to put some thought into what level of assistance, if any, the child may need to attend school.  Of course, for home schoolers the point is moot, but for a child attending a public or private school, there are obviously risks to safety for a child with FOP.  Think of all the bumps, jostles and falls possible when kids go from class to class, or at recess, or lunch, or phys ed…

Many kids with FOP attend school with the help of an “educational assistant”, or EA.  As I understand it, some EAs literally spend the whole school day with the child, making sure everything is safe and accessible.  EAs may need to help with certain things, such as unloading books from backpacks, or trips to the bathroom.  Some kids have the same EA for multiple years in a row.

Other young children with FOP don’t have EAs, or at least not full-time.  I’ve known of a number of young kids with FOP who went through school with just a little bit of extra supervision at recess, lunch and phys ed time.  Of course, in the “olden days”, which for FOP means anything earlier than, say, 1990 ;-), having an EA wasn’t even an option for most kids with FOP, and they just took their chances…

Then there are kids with FOP who don’t become symptomatic until they are school age, or even as teenagers.  If, say, a 15 year old in grade 10 has his or her first ever FOP flare-up, the teen will have completed almost all childhood schooling without any special arrangements, and probably will just finish it off without any extra help.  On the other hand, if FOP first rears it’s ugly head at age 9 or 10, I’d guess that’s kind of a grey area in terms of need for assistance…

Anyway, back to our story.   This week I went to a kindergarten meeting put on by the “Centre for Ability”, an agency which provides physio, OT an other services to preschool age kids with disabilities or other health concerns.  At the meeting, we learned all about the local deadlines, procedures, assessments, assistance, etc around getting special needs kids ready to start kindergarten.  Now I (hopefully, ha ha) know all I need to to ensure a smooth beginning to Miranda’s schooling.

So what level of help will Miranda require?  I think that when she’s doing her actual school work, she won’t need much help.  However, I am nervous about her travelling through school hallways, and especially nervous about phys ed class and during breaks like lunch and recess.  Given the rigidity in Miranda’s spine, and her lack of shoulder movement, she simply can’t catch herself and prevent falls nearly as well as the average child, and so she is prone to falling more often.  I don’t like to even think about that happening on the asphalt covered area in front of her school…  Yikes.

I figure what will most likely happen, knowing what I do about the system here, is that Miranda will probably end up sharing an EA in kindergarten with another special needs kid, most likely one who needs help in the classroom but not so much when not actually learning the “three Rs”.  I think that should probably work well.

Miranda is very excited about kindergarten.  As it happens, our school is one of a number in the province approved to start full- day kindergarten in 2010, so she’ll be diving right in to regular length school days.  I’m fine with that, as I know she’ll be ready for it.  She already does those hours 4 days per week as it is.  September 2010, here we come!

Here’s a recent pic of my gal just as she was turning 5, and ready to take on the world…


One Response to “School and FOP”

  1. Our school has a number of medically fragile children, and two dedicated special needs classrooms for the children to retreat to when not in their mainstream classrooms. One thing our school does is have the fragile special needs kids take recess and use the hallways when the other kids are all in class. That way there is little danger of pushing and shoving and crowding. There are enough special needs kids that there are plenty of friends to play with on the playground, and sometimes “buddies” from the mainstream class are allowed an extra recess to play with their special needs friends. They also have a Phys Ed class just for the medically fragile kids, with a PT there to assist the PE teacher with adaptations. Also, the principal changed the schedule a bit so the special needs bus arrives a few minutes after school starts, and leaves a few minutes before dismissal, so that the special needs kids can pass safely in and out of school without having 600 other kids pushing past them.

    Look at your school district and investigate all the elementaries with special needs programs. Our district has just 3 schools like ours, with dedicated classrooms for special needs, where mainstreaming is encouraged, but the extra safety and support of a large staff of specialists is there for the most fragile children. Perhaps the school which Owen attends is not going to be the best option for her, even though it would be most convenient for you. Just keep your eyes open to the choices that may be out there.

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