Yep, that’s high school there in the distance

Posted by Karen - February 3rd, 2018

This past month we took the first steps to get Miranda ready for high school. Part of me knows she’s absolutely ready for it, while another part says WHAT HAPPENED TO MY LITTLE CHILD?? Parenthood, it was ever thus…

In my kids’ school district, students do kindergarten through grade 7 at elementary school, and then grade 8 through 12 in secondary (high) school. Transitioning to high school is a big and kind of stressful thing for any kid, but there’s lots more to think about when the student is dealing with fibrodysplasia ossificans progressiva (FOP). We want this to go as smoothly as possible, so I went so far as to make contact with the school’s “learning support” teacher in December, and we arranged a date for my husband and me to meet with her in January.

Our meeting at the high school, which took place a couple of weeks ago, was quite useful – we discussed the vital points of FOP, and what it will mean for Miranda’s school experience. We also started some preliminary brainstorming about how Miranda’s school needs will be met. Secondary school is going to be very different to elementary, because instead of being in a cozy, one-storey building with 300 or so students and everything close by Miranda’s classroom, the senior school has 1,500 kids and 3 floors, requiring several minutes of travel between subject blocks. One thing’s for certain, which is that Miranda will definitely need to use a wheelchair to get around (right now she just walks at school with her cane). Fortunately, we are currently in the process of getting her set up with a power chair, which will be ready for September.

My soon-to-be high school student with her furry bud, Gally.

My soon-to-be high school student with her furry bud, Gally.

In addition to the simple logistics of moving around, there’s a lot more to think about. How will Miranda get her books out of her backpack at each classroom? Will she have educational assistant help for part of the time? Will she use a notebook computer for note-taking purposes? What about bathrooms? Can the school band room be reorganized to allow a path for the wheelchair? At this point, none of this stuff is sorted out and nailed down; the process of getting it all figured out will be ongoing, with the learning support teacher’s help, for the next several months. But, at least we’ve got the process started.

Of course, at this time of year, all the grade 7 students – regardless of special needs or not – are starting up the process of getting ready for high school. Just this past week, there was a grade 8 orientation and open-house at the school, where the students got to hear a welcome presentation from the administration and also range around to the different parts of the school and meet the teachers. Miranda told me beforehand that in NO UNCERTAIN TERMS would she be accompanying her dad and me – instead, she was going to be pushed around the school in her manual wheelchair by a group of her friends. Which, I think, was all for the good, since I want her to continue with her bonds with her friends as they all head off on this new adventure. Anyway, Miranda and her posse did end up doing very much their own thing that evening. At the end, I heard the tale of how Miranda wanted to borrow a particular book from the school library, and since she doesn’t yet have borrowing privileges (you know, not being a student there, or anything), she finagled a way to borrow the book in her grade 10 brother’s name. LOL.

The next step in this whole thing will be course selection, which comes up later in February. Grade 8 students have 7 mandatory classes and 1 option, and Miranda’s already decided that her option is going to be band. But – one of the 7 must-do’s is physical education – you know, running around and playing volleyball, basketball, and the like. Obviously Miranda can’t do that… I had thought phys-ed might be waived for her, but when my husband and I met with the learning support teacher, we found out that might not be the case. She might do phys-ed on-line (whaaaat??), and the actual active components of the class might be fulfilled by her doing hydrotherapy, walking when she can, and whatever else seems reasonable. That’s going to be a pretty heavily modified class in Miranda’s case, but hey, why not? Miranda’s actually quite fine about the notion of doing phys ed that way, maybe as a summer course – which would allow her to take an extra language course during the year, French, in addition to the Mandarin which she’s been doing in a (non-immersion) program at school for the past several years.

The process of getting Miranda ready for high school over the next several months will be the usual stuff which the other students are undergoing, overlaid with the extra concerns of having her special physical needs accommodated. The whole thing is a mix of the terrifying with the exhilarating. Wish us luck!

If you are a person with FOP who’s done high school, or parent of such a person, I’d be grateful to learn any tips or advice which you might have. Please leave a comment on this blog or on social media where I post this. Thanks in advance.



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