Friends With FOP

Posted by Karen

A few weeks ago I blogged about trying to find some good group-type activities for my gal Miranda, who has Fibrodysplasia Ossificans Progressiva.  I’m glad to say we got some stuff sorted out…

I believe I mentioned that I signed Miranda up to begin “Kindercooking”.  This is a class for 3 to 5 year old kids, and they go once per week – every Friday from 12:30 PM to 2:30 PM.  The class is at a community centre.  At Kindercooking, the kids first get about an hour of play/art time, where they do typical preschool sorts of things, and then for the second hour, they prepare a simple food item and eat it.

When I first signed Miranda up, I made the program coordinator generally aware of M’s specific needs, and she was confident all would work out.  I was a tiny bit nervous before the program started, because Miranda would be attending WITHOUT a staff person dedicated to her assistance (you just can’t get that for a thing like this), but was somewhat reassured by the fact there are 2 teachers and only 8 kids.  Anyway, Miranda has now attended twice…  And I’m glad to say that all has gone very well!

On the first Kindercooking day, I brought Miranda to the designated room, and told the teachers I’d be outside waiting in the lobby while the class was going.  It turns out they did arrange for one of the two teachers to be more focused on Miranda during the playtime (though not to the total exclusion of the other kids), so that was reassuring.  Anyway, I kissed my gal, held my breath, and walked out of the class.

For the next two hours, I sat and read my book and drank coffee (wow, silence and time to myself! unheard of).  Every now and again I peeked into the room, and all seemed to be going well.  Finally, when the class ended, I went in and saw Miranda eating a little pizza.  She was VERY excited – “Mommy, I made it all by myself!!”  It was soooo nice to see her enjoying herself and doing well.

The second class went just fine as well.  Since that one took place on Friday, just before Valentine’s Day, the kids made cupcakes and decorated them.  Let me tell you, that particular cooking project was RIGHT up Miranda’s alley – cupcakes, icing, candies, it’s all good. 

Here's Miranda in her red Valentine's dress (nb - red for Canada too, on the first day of the Olympics!), holding some of the art she did at Kindercooking.

I’d have to say Kindercooking has been a success.

In recent days, I’ve also been thinking about something a little more adventurous for Miranda, ie. dancing.  I solicited some opinions, and came to the conclusion that if she was going to try dancing, probably tap would be the best option – there’s not as much leaping about as in ballet, and more footwork as opposed to arm movements (which M cannot do as a result of FOP fone in her shoulders and elbows).  I started looking into it, and found that if we give this a try, we’ll probably have to wait until the fall to begin.  Which is fine. 

And so, I had just put dancing on the back burner when I received a newsletter from the “Centre for Ability”, a local not for profit agency which provides services to special needs kids.  There was a story about a program called “Wee Dance”, where 3 to 5 year old kids do simple dance activites under the supervision of physiotherapists.

I had known of Wee Dance before, but could never get Miranda in to it because it was held during my working hours.  Still, I decided to call the Centre and find out more, because if they ever held the program after 3 PM, or on Fridays, we’d be able to attend.  It turned out that that’s exactly what happened this time around – it’s booked for 4 PM on Tuesdays, beginning in March.  Miranda had priority to get into the class, as she’s going to begin kindergarten this fall.  And so, I signed her up.

Miranda was very excited when I told her she was going to start dance class.  She decided that she will have to wear a “dancing outfit” (ie, leotard) with a tutu and ballet slippers.  I’m sure I’ll humour her on that.    If all goes well with Wee Dance, we’ll try tap in a few months.  I think this class will be a really good way of finding out if dancing could be a reality for Miranda, so I’m glad we have this opportunity.

M wearing yet another dress (her fave thing these days), dreaming about dancing.

It’s a fun time when your child starts to venture out and try some different things.  No way are we going to let FOP get in the way of that…