Friday, October 18, 2013

31 for 21: Where We Are Today

I've gotten a couple of questions lately about what exactly Down syndrome looks like, day-to-day, with our nearly 9 month old.  So, I thought I'd put together a little post about how the 3rd 21st is a part of our lives, today.

Of course, we must start with the disclaimer--a diagnosis of Down syndrome only means that one has 3 copies of chromosome 21.  The symptoms & situations vary from person to person, as does the severity of many.  So this is what our life looks like, not anyone else's.

Max's biggest hurdle right now is his low muscle tone.  Hypotonia is very common for people with Down syndrome.  Throughout his life this can impact motor skills--but also speech, digestion, sleep, you name it.

Down syndrome gives Max a few other challenges to deal with as he learns how to move around.  His limbs are short, so his arms don't reach the ground as easily when he's sitting.  That changes how he catches himself from falling, which, in turn, changes how he experiments with pushing into crawling position.  He's hyper-flexible--which can be very cute when he's sucking on his toes in the stroller.  But it also means that his muscles have to work extra hard to hold his body steady enough to walk or grab a toy.

A physical therapist comes to our house to work with Max for one hour a week.  This is a free service from First Steps, our federally mandated, state funded Early Intervention program.  Right now we're working on strengthening his arms and shoulders (good for crawling, and also for playing) and learning to get out of sitting by leaning forward on his arms instead of flopping backward and hitting his head.

I suppose there are other little things, too.  Max's mouth is small, so his tongue sometimes out--which leads to double the raspberries.  His nasal & throat passages are a bit small, too, so his breathing can get noisy when he's stuffed up, and he can make a startling snort/sneeze/grunt when he wants to scare babysitters.  It's hard sometimes, when folks notice something about him, not to say, oh yes, that is the Down syndrome, because many of his quirks can be traced back to it.  But he takes what he's got and makes it his own--hypotonia becomes cuddliness, a protruding tongue turns into his signature rockstar face.

So that's where we are today.  I didn't really know about the physical impact of getting an extra chromosome before Max came along, so I'm happy to share what we're learning as we go.

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