As Down Syndrome Awareness Month 2012 winds to a close, I wanted to share some final, sort of random thoughts – things that have been floating around in my mind that I had hoped to find the time to delve into more deeply during the month, but  . . . alas.

For what it’s worth.

The same but different.  The whole “More Alike Than Different” campaign has always sort of rubbed me the wrong way.  Yes, it’s true that kids/people with Down syndrome are kids/people first, and because of that, they share universal human traits, both physical and emotional.  However, kids with Down syndrome are different from their typical peers: the first thing most people notice is that they have a pretty distinctive, recognizable appearance; they sound different from their typical peers, they learn and retain information differently than their typical peers, and they often have health issues that are not as prevalent in the general population.  To deny these fundamental differences, or even to play them down, I think does a disservice both to the general population and to the Down syndrome community.  The tendency when advocating to focus on the positive, while completely understandable – none of us wants to feel like what we present might play into any expectant parent’s decision to terminate upon receiving a prenatal diagnosis of Ds, and we all want our kids to be accepted and treated with respect and compassion – I think misses the point of advocating in the first place.  At least for me.  My goal is not to get anyone to see Finn “as close to typical or normal as possible,” but rather, to acknowledge his differences and not be afraid of them.  To embrace diversity, you first have to acknowledge and accept differences.

Difference is all around us.  There is a little person who works at our local Target.  My friend Robin mentioned her in her guest post here recently (and it’s interesting, because apparently, October is also Dwarfism Awareness Month).  I happened to be at Target this past weekend (okay, I’m there, like, every other day it seems), and had Kevin and Annabelle with me.  When we walked in, this little person, who is probably no more than four feet tall, was stopping everyone who came in to tell them about a Red Card promotion, and she stopped us as well.  Later, Annabelle said to me, “Mommy, you know that lady who talked to us when we came in?”  “Yes,” I said.  “Did you notice?”  Annabelle said.  I braced myself for some blunt, uncensored reference to her small size from my 8-year old.  “Notice what?”  I asked.  “Her name tag said ‘Mimi,’ so that’s her name.  I like that name.”  I was actually sort of dumbfounded.  That’s what Annabelle noticed – her name.  Or at least that’s what was most notable in Annabelle’s mind.  And I thought to myself, “Cool.  Very, very cool.”

No, they’re not always happy.  Or sweet.  Or loving.  I’m not exactly sure where this particular stereotype came from.  Perhaps as they grow older and their intellectual impairments become more manifest, they seem – and perhaps actually are – relatively unfettered by the typical frustrations and stress factors that most of us who don’t have developmental disabilities experience; I really can’t say.  What I can say is that (a) the stereotype, even though “positive,” reduces people with Down syndrome to one-dimensional, cookie-cutter caricatures rather than real people, and (b) speaking purely from my own perspective, Finn is most definitely not any more happy, loving, or sweet than any of my other kids have been.  He experiences and expresses fear, and anger, and frustration, and sadness.  He can be stubborn, obstinate, and yes, even bratty and obnoxious.  Our biggest challenge with him at this point is tantrums; he’s been in a very tantrumy phase for several months now.  When he is frustrated or doesn’t get his way or, really, is displeased in any way, he responds by screaming and yelling repeatedly at the top of his lungs.  I have no doubt that this behavior has very much to do with his limited language skills; although he is making great strides in attaining more and more expressive language, it’s still not his go-to mode of communication, especially when he’s upset.  Instead, he acts out and responds emotionally and viscerally, and I’ll be honest – it’s taxing.

I don’t care how smart your kid is.  I’m tired of all the emphasis on intelligence and achievement.  Competitive parenting is everywhere, even in the Down syndrome community.  It’s great to be proud of your child’s accomplishments, but I think that too many parents, whether they are conscious of it or not, see their kids’ achievements as proof that they are at the top of the Parenting Game, or that by rising above so-called mediocrity, they are elevated to some upper echelon of parenting, and their kids to some upper echelon of kids.  So much of intelligence and ability and aptitude is pre-determined by genetics and is out of our hands; we can and should provide our kids with opportunities, and we can and should challenge them, but not every kid is gifted, and you can’t make a kid into a genius – not with all the flashcards and tutoring and enrichment activities in the world – and smart and accomplished don’t equal success and happiness, anyway.  Especially within the Down syndrome parenting community, I hate seeing this, the focus on smarts and achievement.  I get that we’re trying to overcome old ideas about Down syndrome, but isn’t one of the big, beautiful epiphanies we’re all supposed to have is that everyone is valuable no matter how intelligent or talented they may or may not be?

Inclusion is ideal, and yet . . . It’s hard to achieve.  I’ve seen most of the strides Finn has made over the four years of his life thus far come mostly through inclusion in regular family activities (his siblings treat him no differently than they treat each other, and this has served him very well), and now, preschool.  The preschool he attends two days a week (I wish it were three days a week, but it isn’t cheap!) is awesome.  It’s a “lab school” at our local community college, which means that it serves both as a preschool for young children, and a classroom for college students taking Child Development classes.  It is a “typical” preschool that is committed to diversity and inclusion, and this makes me happy for two reasons: (1) because they welcome Finn, and (2) because the college students who are exposed to Finn and other kids with differences will benefit from that exposure.  Finn is learning all kinds of wonderful things just by virtue of being included with typically developing peers.  However, it only works because the powers that be are willing to make it work; they’re willing to see Finn as a whole person and not just a set of deficiencies; they’re willing to make accommodations for him (for instance, allowing him to come to school in Pull-Ups even though, officially, kids are supposed to be potty-trained to attend).  Inclusion is an ideal that I believe is worth striving for, but it’s certainly not a given.  It only works when all parties are willing and when appropriate accommodations are made, and unfortunately, this isn’t always possible, or in any event, it’s certainly not often the reality.  And although I love Finn’s preschool and am grateful beyond words that the opportunity to enroll him there basically fell into our laps, I’m already stressing out about next year, and about kindergarten.  I don’t think we’ll enroll him in kindergarten before he’s six, which means another year of preschool after this year, but in all honesty, I think he’s going to need something more than what his present preschool has to offer in order to get him ready for kindergarten.  And I’m afraid that any other typical preschool that is a little more academically geared than his present preschool isn’t going to welcome him the way his present preschool has, and I know that we’re going to have a major battle on our hands to get him enrolled in typical kindergarten at our neighborhood public school in a couple years.

“Retard” is going the way of “idiot.”  As much as I despise Ann Coulter and the garbage that issues forth from her, she’s right about something: “idiot,” “moron,” and “imbecile” were all, once upon a time, terms used to describe, in clinical terms, people with developmental disabilities.  It’s been so long, at least in western society, however, since those words were used in clinical terminology, that they’ve become pretty far-removed from their original definitions.  Such is the evolution of words.  As a result, most people use them freely now and think nothing of it; they’re not considered slurs by a long shot, even by parents of kids with developmental disabilities, even though, like “retarded,” they all have their roots in the same exact place.  Personally, I don’t like “idiot,” “moron,” or “imbecile” any more than I like “retard” for this very reason; it doesn’t feel right to me to disavow one while accepting the others, so I don’t use any of them, I don’t allow my kids to use any of them, and I cringe whenever I hear other people use them.  But guess what – “retard” and “retarded” are headed in the same exact direction, thanks to Rosa’s Law.  Although well-intended, it doesn’t serve to change people’s attitudes towards those with developmental disabilities – which is at the crux of disparaging language to begin with – it only serves to change the words.  And so, because of this, in another few years, “retard” will be exactly the same in people’s minds as “idiot”: so far removed from its original meaning that saying it describes the developmentally disabled won’t even hold water anymore.  So, I guess my point is just that I think about this a lot, and it kind of makes the fight against the R-word feel that much more hopeless.  And that they’re all ugly words when you get right down to it, and there are dozens of alternative, handy words available to express what we want to express without making reference to entire classes of people who have been marginalized forever and a day.  And also that I think the key is focusing on attitudes and perceptions.

And that pretty much wraps up Down Syndrome Awareness Month for me.  In truth, though, every day is Down Syndrome Awareness Month in our house . . . and yet, at the same time, Down syndrome really isn’t very often center stage in our house.  We advocate by including Finn as a whole, valuable person in our family, and by being open about what Down syndrome looks like in our family.  And it’s gratifying to know that at least a few people’s perceptions have been changed because of this.

Tomorrow, hopefully, photos of Finn in his Halloween costume.  Fingers crossed!

Down syndrome, Down syndrome Awareness Month, inclusion, r-word, trisomy 21