Posted by Karen
It’s January, and we’ve signed Miranda’s brother Owen up for swimming and skating lessons. He’s got a lesson going every night Monday through Thursday. Until not too long ago, Miranda accepted this as natural and didn’t question why she wasn’t in any classes. She was, after all, too young for most things. Recently, however, she’s been starting to think about activities, especially since her friends are talking about them. She knows, for instance, that a few of her friends take ballet lessons and another is in gymnastics. Miranda is learning to swim, but that’s a once a month thing with her physiotherapist and she’s not in lessons at any community pool (her arm restrictions would prohibit that).
We had a funny moment a few weeks ago - Miranda’s friend was chattering on about how she was taking “Sea Turtle Advanced” level swimming lessons, and Miranda said she was taking swimming lessons too. She said, “I’m not in Sea Turtle. I’m in… Floating.” (which is what we were working on with the therapist). It was kind of a funny moment, but made me realize I should think about activities for my little miss.
So what are good activities if you’re just about 5 years old, and have Fibrodysplasia Ossificans Progressiva? I’d venture to say the answer varies from child to child. I do know one little girl with FOP who’s about 5, and she IS taking ballet lessons. I think that wouldn’t work for Miranda though – unlike the other little girl, Miranda has almost no shoulder movement and so couldn’t do most of the arm movements. Also, ballet involves lots of running on a hard wood surface, and Miranda is too prone to tripping when she runs a lot. Also, I think skating is out, for obvious reasons (all that hard, hard ice, yikes).
But… I don’t think it’s fair that Miranda should be kept out of all activities because of that stupid ole’ FOP. And so, over the holidays, I sat down with our City of Burnaby Parks and Recreation guide to see what I could find.
First I looked for music lessons. Music is a good idea (especially singing – expands the ribcage) but most types of such lessons seem to start at age 6, and M is just turning 5. I did find one program in the guide, but it seemed to involve dancing as well, and I wasn’t sure about that. I think we’ll be returning to the idea of music lessons when Miranda is a little bit older.
Pretty soon I figured out that should focus on the “preschooler activities” section of the guide (yeah, duh, I know, kind of obvious). Lots of those activities seemed to be focused on running and tumbling in gyms – not what we’re looking for. I did, however, see one thing that looks promising. It’s called “Kindercooking”, and is for kids age 3 to 5. The idea is that an instructor teaches a group of kids about healthy snacks and how to prepare simple recipes. I checked into it with the group instructor, and she was supportive of Miranda participating.
And so, Miranda is now registered to start her Kindercooking class on Fridays in February, from 12:30 PM to 2:30 pm. I think she will have a lot of fun in this class, and learn some interesting things. I’m really glad I was able to find an activity which looks suitable.
On the down side, the City can’t provide one-to-one support for Miss M during the class. However, I think it will be OK anyway. It’s only two hours per day, once per week, and the kids will be absorbed in preparing their recipes. Also, I’ll be on-site (though not in the classroom) during the class, so will be available right away if anything were to happen. Naturally, I will also be briefing the instructor thoroughly on what she needs to know about FOP.
Please wish Miranda luck as she starts this new adventure. Also, if you are an adult with FOP, or the parent of a child with FOP, please feel free to share your comments with me about lessons or activities you or your child did (especially if FOP had been diagnosed at the time). I’d love to get more ideas. Thanks.