31 for 21: In the Middle


For some reason, over the course of Finn’s brief life so far, a lot of people have assumed that he is “high-functioning.”  I’m not sure exactly why this is.  Perhaps it has something to do with his facial characteristics; although I certainly see the hallmark features of Down syndrome in his beautiful face more and more the older he gets, a lot of people still tell me that “you can hardly tell he’s got Down syndrome.”  Perhaps the widespread assumption that he’s “high-functioning” really has more to do with just blowing people’s general misconceptions about Down syndrome out of the water.  “So that’s what Down syndrome really looks like?  Huh.”

Anyway, whatever is behind this assumption about Finn, I’d like to put it to rest right now:  I don’t know if he’s high-functioning.  I have no idea what his potential is, what his strengths and weaknesses will ultimately be.  What I can tell you is that right now, he’s somewhere in the middle.  There are kids his age with Down syndrome who can do quite a bit more than Finn can, and there are kids his age with Down syndrome who can do quite a bit less than he can.

I will admit that in the early part of this journey with Finn, during his infancy, filled with my own misconceptions about Down syndrome, I thought (hoped) that the fact that Down syndrome seemed to have manifested itself so mildly in his outward appearance meant that it also manifested itself mildly inside his body and brain where I couldn’t see.  I chased a hoped-for diagnosis of mosaic Down syndrome, and was crushed all over again when a second blood panel indicated that no, he doesn’t have MDS, but garden-variety trisomy-21.  I watched him roll over at three weeks old –

– and continue to keep rolling over from there, thinking it must mean something.  I went through a period of time, like I think so many parents of children with Down syndrome do early on, when I thought, “Okay, he has Down syndrome.  But he’s gonna bust down all the myths and stereotypes and be the strongest, smartest, most able Down syndrome rock star out there!”

Totally makes me cringe now.

We are a society of perfection seekers, of competitive parenting, of high-acheiver breeders.  We are a culture of Baby Einstein and trying to give our kids a leg up before they even emerge from the womb.  We want our neurotypical kids to walk early (convinced it must reflect some brilliance), to know their alphabet, all their colors, shapes, and the Presidents of the USA in order before they start preschool.  We want them to be the best little soccer players, to ace the tests and win the awards and be identified as “gifted.”  And if they’re not identified as gifted, well then, they almost were.  Because when you get right down to it, this all reflects on us, the parents.  It exposes the biological pieces of ourselves we’ve passed onto our offspring – and of course we only want the best pieces of ourselves inherited by our children.   It grades us in our parenting skills: if my kids are good and do well, it means I’m doing a good job.

Of course, this is all bullshit.  But I think we all believe it on some level – some to greater or lesser degrees than others.

Nowadays I am wary about placing too much emphasis on Finn’s achievements, not because I’m not immensely proud of everything he accomplishes, but because I don’t want him valued by the world around him based on what he can or can’t do.  I know full well how shitty it feels to be faced with higher-achieving kids and to have that little voice inside me whisper “Why isn’t your kid doing that?  You’re not doing your job very well . . . .”  And I know full well that there are kids out there – kids with Down syndrome, other diagnoses, or brain injuries resultant from illness or accident – whose ability levels are much lower than Finn’s, through no fault of their own or their parents.  It’s so often just the luck of the draw, but everyone – everyone, regardless of what they can or can’t do – is a human being deserving of kindness, dignity and compassion.

Finn is doing well, and by that I mean that he continues to make progress in every area.  But more important to me – most important to me – is that he is happy, healthy, and well-loved.

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2 Comments on “31 for 21: In the Middle”

  1. Addie
    October 12, 2011 at 6:51 pm #

    I really love this perspective…

    Its interesting – before we got Wallace, we pretty much only knew that he had down syndrome (and some other medical problems)… we didnt know what to expect… when we got him, he looked and acted about 2 years old (he was 6)… but now that weve had him in our home for over 10 months, its amazing the progress he has shown – leaps and bounds… and goodness, is this kid smart…. no, he doesnt “get” everything, he is hugely stubborn and likes to push people’s buttons, but he can problem solve like no one’s business… it makes me wonder if environment has more to do with it (and the expectations) than the down syndrome does – just like all children… besides Wallace being mostly non-verbal, I almost forget that he even has down syndrome most days… but then maybe thats just me being his mom… who knows.

    Oh, and I saw this post the other day and thought you might find it helpful… http://www.only1mom.com/2011/10/special-education.html

    • Lisa
      October 12, 2011 at 7:29 pm #

      Thanks for the link, Addie!

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