Thursday, December 8, 2011

Looks Like Down Syndrome

Even though I know that I am a biased mother, I still think my son is cute.  I think all my kids are cute, but Wyatt, the one that came with a little extra, is pretty damn cute. Sleeping, awake, serenading me with "Oooo", it doesn't matter.  Cute.

Lots of other people find him (and all my kids) cute.  I am constantly getting compliments.  Especially when they see Wyatt's big blue eyes and the Brushfield spots that form white lace around his pupils.  If they ask about his eyes, I will tell them, just as if they ask about something else that is unique to him.  Usually though, I just say thank you and smile.

Once I tell people that Wyatt has DS, there is usually a pause.  As I've said before, people just don't know what to say.  One of the most common things I hear is "well, he certainly doesn't look [like he has Down Syndrome].  This is the point where I often find myself at a loss as to what to say.  Do I say "well, he does sometimes" or "I know" or what?  Lately I've been scrolling through pictures when this occurs and I just keep going.  Yes it is more evident here, but not here.  But why is that?  How does that work?

Photography is a tricky thing.  Even with the most basic of cameras, a halfway decent photographer can change the look of a person just with a few simple changes.  Lighting.  Positioning.  Cropping.  Focus.  Throw in a little time on hair and makeup and there is a world of difference.  Throw in a little more time and have the model actually pose, and you are really getting somewhere.  All those pictures taken on the runway or the red carpet where the model has one leg in front of the other...  Do real people stand like that, or walk?  No.  It tricks the eye, making legs look longer and hips smaller and takes the eye away from a potentially wrinkly or pointy knee.  Want to know why you always look crappy in family holiday photos?  You probably were acting naturally.

I've discussed the most common physical manifestations of Down Syndrome before.  Wyatt has very few things on that list.  His head is shaped different, his face is flatter and his nose barely has a bridge.  He has epicanthal folds and as I mentioned earlier, Brushfield spots on his irises.  His hands and feet are "normal" in the sense that he does not have a simian crease or a sandal gap.  He doesn't seem to have shorter legs or arms, but he is still a baby and we will not know for a while.  His fingers look like any other baby's:  chubby, short and straight.  His nails grow twice as fast as his twin sister's.  Wyatt has hypotonia and his muscles are much weaker, which at this point is reflected in the twins weight:  although they are the same size, his muscular sister weighs over a pound more than he does.  He still has a hole in his heart.

What has erroneously been attributed to the "look" of Down Syndrome has often been described as "adenoidal", "slack" and even "slumped".  Rounded shoulders, open mouth, visible tongue, unfocused eyes.  Add epicanthal folds, smallish low placed ears and a weak bridge of the nose.  I remember being told as a child that this was due to them being "retarded";  over 35 years later I know this to be untrue.  It is a matter of posture, a matter of poorly developed muscles.  It is a matter of poor perception on our part.  What has been used as a broad description for so many, what has been touted as matter-of-fact is really a matter of needing a little physiotherapy.  It is not a determination of mental capacity or function.  Neither is an unfocused stare, which any child can exhibit from time to time, dependent on his or her level of engagement or interest in something.  I can well attest to this as I watch Wyatt's eyes bore into me like little blue lasers as I sing or talk to him. Hypotonia is not an indication of mental functioning.  Not.  Discriminating against someone for their lack of muscle tone or control makes as much sense as discriminating against a fish for their lack of feet.

Secondary to this is a disturbing trend that I have come across in my travels lately.  Yes, "the R word" is still popular in many circles.  I know those around me are changing their thinking;  whether it is out of respect for me, or for Wyatt or for their own shifting ideals, I cannot say.  What I can say is that what needed to be pointed out once, was then apologized for and is now self-corrected mid word (or gone completely).  I appreciate that.  This is not what is troubling me.  What is bothering me is the substitution of "Down Syndrome" to mean the same thing, to be used in the same place.  All you have to do is use "down syndrome" as a keyword search on Twitter to see what I am talking about.  Yes, my community peeps are there, taking the word back.  Keep scrolling and you will see a lot of what I am talking about.   Everything from "Got my new driver's license today. My picture is fantastic! I look like I have Down Syndrome" to "All kids with down syndrome look the same0.o, no matter what race they are." to "I'm dealin wit fuckin fucktards wit down syndrome!! I cnt do dis!! I'm annoyed 2 da MAX!!" ... and worse.  So much worse.

I can't change how people talk.  I can't change how ignorant some folk are. Some people, for one reason or another will always require a scapegoat or someone else to put down to make their narrow views look larger and to make themselves feel more special.  What I can point out, none too gently, is that once upon a time, that word or phrase could have been "gay".  It could have been many things, up to and including a word beginning with "N".  People forget that all too easily.  Play with those tweets, substitute your own slur of choice.  It isn't all that funny now, is it?

Using the R word or describing something as "Down Syndrome" other than the condition itself, no matter how benign in intent, hurts those who do not deserve it.  It is not funny.  It does not make you look clever.  Although you may not have "meant anything by it", others most certainly do.   When you use these words you are exposed for the ignorant, small minded soul that you really are.  Expand your mind and your vocabulary.  Do not create a safe haven for bigotry.

Wyatt will have many challenges in his life.  To be good parents, we will have to let him get dirty and fall down and scrape his knees.  I suffer no delusions regarding this.  As with any other child under the age of one, we will not know how well he will perform in school or his level of functioning overall.  What we do know is that we have a loving son, who lights up like a Christmas tree every time he sees one of us.  A son whose every accomplishment is later and more awkward than his twin sister's, yet is greeted with as much enthusiasm (and perhaps a little more in some cases).  He has Trisomy 21 or Down syndrome.  He has some features that are often expressed by an extra 21st chromosome.  It doesn't make him any less human, or any less deserving of love, of education or of respect.  He looks my husband and I... and at times, a lot like my Grandma Brown, oddly enough. He looks like Wyatt.  He looks like himself.  He looks like a little boy, full of mischief who only wishes to love and be loved.

Just like the rest of us.

10 comments :

  1. If you haven't been told today... you're awesome.

    ReplyDelete
  2. Wyatt is fortunate to have such a mom.

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  3. Beautifully expressed!

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  4. Love this blog post and watching twins develop is soo much fun and extra neat with extra special reasons for you!

    I love the discriminating against people with low tone comment and my own tone is quite low too so I fit that bill in many ways--you explain it quite nicely!

    Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations.

    ReplyDelete

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