Transition to… HIGH SCHOOL!

Posted by Karen - November 25th, 2018

Guess what, everybody? My kid is now – wait for it – a high school student. WOW.

First day of grade 8 in September.

First day of grade 8 in September.

Of course, starting secondary school is a big deal for all kids. Miranda and her friends, none of whom have physical disabilities except for her, were all in a tizzy of frenzied speculation this summer about what it would be like. They were going from a one-storey school with 400 kids and a single teacher for almost everything to a three-storey building with 1500 kids and a different teacher for each of eight subjects. It was obviously a major change. In Miranda’s case, however, fibrodysplasia ossificans progressiva meant that in addition to all the usual stuff, she had several more things to adapt to.

The most major issue was that she started using her new power wheelchair full-time at school. With the size of this building, and with classes spread throughout the three different floors, there was no way Miranda would be able to keep walking with her cane. This required a certain amount of, well, psychological adjustment… Miranda had to learn to accept that this was her new reality, and to face having several hundred students who don’t know her staring as she makes her way around the building. M hasn’t said a whole lot about this, but I have no doubt it was a significant thing.

Actually, when I think about it, it was the change to using a power chair full-time from which almost all the other things unfurled. For instance:

– We had to work with the school administration to come up with an emergency plan. It turns out there are at least two ground level exits on each of the first two floors of the school (because of the building being built partially into a hillside), but there’s no exit from the third floor. What would Miranda do if there was a fire or earthquake and the elevator was out of commission? We’ve got that more or less satisfactorily sorted out now, but it was definitely a source of some anxiety for me.

– Speaking of the elevator, it’s not open to all the students for general use – only to students with physical limitations. It turns out there’s a special card which you have to wave in front of a sensor, and only then can you press the button to call the elevator car. Miranda couldn’t actually reach the sensor, though, so I had to use some heavy-duty tape to secure the access card to a back scratcher which she could then extend to the sensor.

– Lockers. As a high school student, Miranda has one, but she can’t reach it due to her restricted arm movement. She had to arrange with a few of her friends (and occasionally her older brother) to meet with her at the beginning and end of the day to access the locker.

– In band class, how would Miranda manage? It’s a pretty crowded room, and she needed a plan. What we ended up sorting out was that she has a sturdy, rubber-footed adjustable stool in the band room, along with a cane, and she gets up out of her chair and transfers to the stool, where she can reach the percussion instruments she uses. Then, at the end of class, she moves back to her power chair. I believe this took some adjusting and re-arranging of the back of the classroom.

Playing the snare drum. Miranda's shoes were off because the kids were at a special workshop field trip where they weren't supposed to wear their shoes, and Miranda is at risk for slipping while wearing socks.

Playing the snare drum. Miranda’s shoes were off because the kids were at a special field trip where they weren’t supposed to wear their shoes, and Miranda is at risk for slipping while wearing socks.

– Miranda is no longer taking phys ed. She still participated to at least a nominal degree during her last year of elementary, but is now excused from it due to the pretty much impossibility of doing phys ed from a motorized wheelchair. As a result, Miranda is now probably the only grade 8 student in the school taking two languages – she decided to take French along with the Mandarin she’s been studying for several years.

I have to say it, September and October were pretty much a blur in terms of getting everything figured out and organized for Miranda. Things have now, however, finally started to calm down. I think – dare I say it? – that Miranda’s now adjusted to the new normal of being in high school and using her power chair full time (while in school – she still walks at home). And, in my humble opinion, I think she has done exceptionally well with this new life transition; she’s handled it all with aplomb. That being said? I’m glad high school is five full years – I wouldn’t want us to have to repeat all this any time soon!


PS – The annual FOP research report came out this past week! If I was going to summarize it, I’d say it’s all about FOP having entered the brave new world of drug trials. If you’re interested in reading the report, go to this link:


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