Posted by Karen
I learned something interesting and useful this week. I’ll tell you what I learned, but first, will back up a few steps and set the stage for explaining it.
If you read my blog last week, you’ll know that Miranda took a nasty fall several days ago. She had been outside with her daycare group, and to make a long story short, she fell and scraped her nose and got a big gash on her forehead. This was a fall on hard pavement, so we worried about a flare-up of her Fibrodysplasia Ossificans Progressiva. In hopes of preventing a flare-up, I gave her a course of treatment with Prednisone. After that, there was nothing to do but wait the 6 to 8 days in which it takes FOP flare-ups to appear (if they are going to) on Miranda.
We’re now 12 days post-fall, and I’m relieved to say that only one flare-up occurred, and it’s on Miranda’s forehead. While no flare-ups are good, the ones on the forehead are probably the “least bad” since they don’t cause any loss of motion, they tend to only lead to little bits of bone formation, and they generally don’t spread elsewhere (at least they never have so far for Miranda). And, in fact, that flare-up is already starting to shrink down as the inflammation subsides. This is good… Crisis averted.
Also good is that the teachers from the daycare all had a meeting to talk about the fall and prevent it from happening again (actually, this was her first such fall in over two years at that daycare, so I think they have a pretty good track record). All the teachers were reminded that whichever teacher is in charge of Miranda is supposed to be holding her hand if they’re walking outside on hard pavement. As such, I had figured this event was over, and everything was resolved.
But… Maybe not, as it turned out. This past week, we had a meeting with the physiotherapist from our local school district. This gal’s job is to make an assessment of each child with special needs to figure out what accommodations the school must make for the child when she or he starts school, which will happen for Miranda this September. After we finished the assessment, which involved a bunch of hopping, toe walking, ball throwing and so forth, I had a chat with the therapist. I mentioned Miranda’s fall to her, more to explain the cuts on her face than for any other reason. I also said I was happy that the daycare was going to make sure all teachers knew about holding Miranda’s hand while on pavement.
Here’s the important bit – the physiotherapist then told me that she doesn’t recommend holding hands with a child who has balance issues (for convenience, I’ll refer to such a kid as an “FOP child”, though it applies to other kids with balance concerns as well). I was puzzled, and asked her for clarification – why? She then explained that there are two reasons. First, if an FOP child is holding hands with another person, be it an adult or another kid, the FOP child has to coordinate her own balance with the other person’s balance, and this is harder to do than just walking by herself. If the other person trips or stumbles, or starts running, then the FOP child has to adjust her own balance to accommodate for this. That’s hard for kids with FOP limitations to do, since they have limited trunk movement. And so, the end result is that the FOP child is actually more at risk of falling when holding someone’s hand than when walking by herself.
The second reason for not hand-holding is that if an FOP child is holding an adult’s hand and does start to fall, for whatever reason, there’s a good chance the adult may instinctively react by jerking on the child’s arm, or worse even, by losing her own balance and falling on top of the FOP child. Obviously, neither of those things would be good for an FOP child.
And so, rather than holding the FOP child’s hand, the physiotherapist recommended that an adult walk very closely behind the FOP child when in risky environments (ie, on hard pavement), and keep a good watch. If the FOP child does trip, the adult can then reach her own arms out in front of the FOP child’s chest and prevent the fall.
(NOTE – when Miranda fell recently, she hadn’t been holding an adult’s hand, but she was holding the hand of another little girl. When the girl started running unexpectedly, that’s when the fall happened.)
When the physiotherapist explained this, it was like a lightbulb flashing on above my head. I instantly felt the correctness of what she said. I KNOW there have been times when Miranda probably fell because she couldn’t correct her own balance when holding my hand. Also, I KNOW there have been times I’ve instinctively jerked on Miranda’s arm when she was losing her balance.
This was really an epiphany for me, and when Miranda goes back to daycare this week, I’m going to ask them to change the protocol for walking with M. I think this is important.
(On a side-note, I will in fairness say that this rule might be less applicable for a toddler. Kids that age might need to be holding an adult’s hand to prevent running out into traffic, which would be more dangerous than falling…)
In the end, of course, no system is perfect, and I know Miranda will continue to have falls, though hopefully they’ll be few and far between. It’s not always possible to prevent falls, because we’re all humans and humans make mistakes. However, I think this is a good tip for increasing safety in the context of FOP.
Here's Miranda with her paper Superman puppet. Much like Superman, she'd rather run around and be speedy than worry about stupid stuff like falling.
