Wednesday, August 15, 2012

Comparing Apples to Apples

You know how they say you shouldn't compare your child's development to another's, because all children develop at their own speed?  Which is a total lie by they way, because of course there's a standard by which children are expected to have reached certain milestones.  How else would they come up with what is standard and "typical," without comparing?  How else could they determine who is "developmentally delayed?"

Sorry. Tangent.

Cartoon source

I love this cartoon.  It's ridiculous to expect a dog, a seal, a fish, an elephant and a penguin to be able to climb a tree, right?  Just like it's illogical to expect every person to be good at the same thing, right?

Note the x in the clouds...
Except that humans are all the same breed of animal.  A more true-to-reality cartoon would depict a bunch of monkeys being tested on their ability to climb a tree.  A few monkeys not being able to climb a tree wouldn't be nearly as illogical and therefore not as funny.  Some of those monkeys might be better at digging holes though, or balancing rocks on top of each other.  And they need to be recognized and valued for what they are good at.

I understand what this cartoon is trying to say.  And I'm sure I've spent more time thinking about this than the average (non special needs) person has.  I like the point it's making, and it makes that point very well, for anyone who doesn't sit and think it through too thoroughly.

Anyway, as a parent of children with developmental delays for several years now, you'd think I'd be better at not comparing them to other kids.  After all, I've had almost six years now (since their diagnosis) to get used to the idea that my boys won't be keeping up with the standard timetable for reaching milestones.

It never stops being sad, though. I'm not losing sleep and bawling real tears over the fact that their four-year-old cousin is potty trained, and my seven-year-olds aren't.  I'm not.  But I'm aware of it.

And this is how it's going to be forever, isn't it?  All throughout their lives, am I going to keep mourning what isn't?  Is it ever going to be acceptable to me, that my Zack and AJ don't keep up with standards of development?  I struggle a lot with acceptance.

And it's not even just typical kids.  I compare their development to other kids with Fragile X Syndrome.  I have the benefit of belonging to an online community full of parents of kids with Fragile X of all ages and varying developmental abilities. And when I read that a two-year-old with Fragile X is saying some words, I picture a line scale, where mildly affected is on one end and severely affected is on the other.  And I adjust where my boys fall on the scale based on what I hear from other parents.

My boys didn't utter an intelligible word until they were four.  A kid with Fragile X who is talking at two is obviously more mildly affected.  A kid with Fragile X who is talking at two, heck, he will probably be mainstreamed.  Might be able to keep up with his peers.  Play soccer.  Have friends.  He'll understand how to socialize.  The possibilities for that kid are endless.

I see miles of potential for that kid talking at two, Fragile X diagnosis or not, that I don't see for mine.

It's worse, comparing them to other kids with the same syndrome. Obviously it's not fair to compare them to the typically developing children. That's apples and oranges.  Those differences aren't as difficult to see.  Comparing them to other kids with Fragile X Syndrome though, those kids are the same. Apples and other apples.

Do the rest of you moms of kids with Fragile X do this? Do you get sad at things your kids still can't do, that you hear about other Fraggles accomplishing?

1 comment:

GB's Mom said...

It is not just Fragile X- most disorders come on a spectrum. I don't think many people ever arrive at complete acceptance. Most of us cycle back to mourning. The cartoon is good for the education sector. I don't think it helps parents in the trenches very much. The only thing I have for you is my survival mechanisms; I mourn, I move on, I try to enjoy the moments, and then I cycle again.


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