Independence

Posted by Karen - May 31st, 2015

My daughter is now a pre-teen. I guess that starts around age 9, and she’s now 10 (and a half). And, like clockwork, over the past year-ish I’ve been seeing Miranda push for more freedom. This is absolutely age-appropriate, but it’s definitely… a challenge in the context of fibrodysplasia ossificans progressiva.

With more freedom comes more risk. With FOP, even a minor fall or bump can lead to a flare-up and more bone. It can be a vicious cycle – the child is tired of restrictions, so does more things and take more chances, suffers a trauma, gets a flare-up, flare-up causes more bone, bone causes more restrictions… Gah. As a parent, a scared, small part of me is sort of tempted to just say NO to everything.

Realistically though, not letting Miranda do typical 10 year old things would be cruel, and undoubtedly bad for her emotional/psychological development. A far, far bigger part of me doesn’t want anything to do with limiting her activities. That part wants me to do everything I can to promote M’s independence. Besides, Miranda is older now and definitely takes more care for her own safety – the last thing she wants is some kind of uber-embarrassing fall and helplessness in front of all her friends.

So, what does that mean for my particular pre-teen with FOP? Here are a few recent changes…

– The helmet is mostly gone. For years, Miranda wore either a soft or hard helmet almost everywhere outside the house, but we’ve gradually changed that. Now, the only time Miranda wears her helmet is when the risk is the absolute highest – when moving between classrooms at school, and the hallways are full of rowdy, fast-moving kids who might plow her over (but thankfully have not done so to date). Other than that, she’s helmet-free.

– I don’t necessarily swim RIGHT next to Miranda, depending on the circumstances. In the ocean – yes, but in swimming pools, not always. In fact, I might not even go in the water with her these days, especially if we’re in our small townhouse complex pool. M is old enough and smart enough to stay safe and not do risky things (of course, I do still sit on the pool deck and keep a careful eye out, and demand that she move back RIGHT NOW if she’s getting in too deep, LOL).

O and M in the pool, while I sit ON THE SIDE.

O and M in the pool, while I sit ON THE SIDE.

– I let Miranda walk alone with her 13 year old brother, who is very responsible, from our house up to the corner convenience store to buy a treat. This is maybe a half-kilometer away (1/3 of a mile), and requires them to be out of my line-of-sight. Owen has to have his cell phone with him at all times, naturally, but that’s the only major precaution. Going to the store with Owen is something Miranda enjoys A LOT: Look at me! Going to the store with my teenage brother and no stupid old mom! (ha ha)

Those kids do enjoy their ice cream...

Those kids do enjoy their ice cream…

– If we go to a shopping mall food court for lunch, I give Miranda the money and she goes to the food outlet herself and gets her own food. A few months ago she started pushing me hard to be allowed to do this. At first I made Owen go with her, but now – she does it herself (again, I’m sitting and watching from a table or another outlet line-up not far away).

If my daughter didn’t have FOP, a lot of this would be pretty small potatoes stuff. Hell, where we live, 11 year olds – 6 months older than Miranda – can even take a BABYSITTING course and then begin looking after kids on their own at age 12. But… Again, with FOP, the assessment of risks vs independence is so much more significant.

What do I foresee as the next big step? I’ve been thinking about how to engineer things so Miranda can stay at home ALONE for a short period of time (daytime only). This is something she really, really wants to be allowed to do, and her brother certainly did it at age 10. This is a very scary thing for me, though. Miranda could fall and be unable to get up, or otherwise hurt herself and have no-one there to help her. Also, she can’t use the bathroom independently because of being unable to manoeuvre her clothes on her own. But still… If we’re talking about a short period of time (an hour or two, say on a weekend or after school?), maybe there’s a way to work this out safely. Hey, if you’re a parent of a child with FOP who is teenaged or older, I’d love to hear it if you have any suggestions for how to do this and minimize risks. Please post a comment!

 

Important PS info:

1. Help us wrestle the FOP beast under control by making a donation to our summer FOP fundraiser. On August 2, 2015, two western Canada FOP families will be joining forces to walk in Calgary, Alberta, and we want your donation! All funds raised at our Walk for FOP will benefit the Canadian FOP Network, a registered charity in Canada which financially supports FOP research. To donate on-line, go to: www.walkforfop.com. Or, contact me and I’ll be happy to tell you how you can send a donation cheque (this may be better for larger donations so as to save on credit card processing fees). Thanks!

2. Are you age 15 or over and have FOP? If so, and if you’ve got a new flare-up on a limb, hip or shoulder, you may qualify to take part in the current trial for the potential FOP medicine Palovarotene. You have to do a few short-term trips to one of 3 test sites in San Francisco or Philadelphia, USA, or else Paris, France, but your travel expenses are covered by Clementia Pharmaceuticals, the company doing the testing. For more information, go to: http://www.ifopa.org/news-and-events/latest-news1/497-interested-in-participating-in-the-clementia-phase-2-clinical-trial.html

3. Clementia is also looking for participants age 2 to 65 to take part in a “natural history study”. The idea is to follow people with FOP over time to see how their FOP progresses. The knowledge gained from this study will be invaluable in helping assess the effectiveness of potential FOP treatments. For more information, go to: http://www.ifopa.org/drug-development/clementia-fop-natural-history-study.html

One Response to “Independence”

  1. Susie says:

    I liked your article. My daughter turns 10 in July. It is hard watching them grow up!



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