31 for 21: How We're Learning

(Another photo from my brother's wedding a few weeks ago.  The rain keeps falling here, and the light is terrible in every picture I've tried to take for the past week.)

Watching babies learn is fascinating.

And watching my two boys learn and grow, and observing some of the differences between them, keeps me entertained and awed.

Toby has always been all or nothing with his interests and his skills.  Two years ago he refused to hold a pair of scissors--for me, for his preschool teachers, for anyone.  He was convinced that he could not cut, and the "can cut a straight line" box (along with a few others) remained unchecked on the preschool skill sheet.  Then, over the summer, there were photocopies of Piggy (from the Elephant and Piggy books) puppets at the library--and before I knew what was happening Toby had chopped his way around the round puppet, ears and all.

Toby refused any sort of sign language until about 15 or 16 months.  Then, in an ah-ha moment, he figured out "more".  And within a week he had a dozen other signs.  At two years he still wasn't stringing two words together.  But 6 months later his preschool teacher remarked that he never stopped talking.

With Toby, it was always easy to remember the "firsts" and to know which day to mark them on a calendar.

Max goes about things differently.  He's got about a dozen gestures right now--that may or may not mean anything.  Sometimes he'll do them when asked, sometimes he won't.  Sometimes he seems to be practicing, and sometimes he seems like he's just waving his arms around and any resemblance to a sign is coincidental.  He babbles mamamama constantly, but sometimes he looks right at me when he says it and seems to be using it to get my attention.

Max loves the attention he gets from copying his therapists.  So he'll play along with their games.  And then he'll clap for himself and wait for everyone else to join in.  And then he won't try the skill again for weeks.  He's been "army crawling" for months now, but rarely for more than a scoot or two.  Skills that seem like they're moving forward will stop abruptly and regress a bit.  And then, after some time, he'll figure them out again.  Max seems much more comfortable showing us his attempts, but some days the process seems one-step-forward-two-steps-back.

Siblings do things differently, I get that.  But throw the Down syndrome into the mix and it gets dicey.  Do I want to acknowledge that some of Max's learning style comes from that extra 21st?  Am I falling into stereotypes by noticing how he wants to please people, how he uses his smile to get what he wants, how he seems to practice and practice and practice before he masters a new skill?  Shoot, is it fair to make any sort of conclusions about the learning style of such a little guy?

I just know that I enjoy Max's learning the most when I sit back and watch, and don't get too caught up in what he's doing when.  Regardless of how he gets there, he's a toddler, figuring out the world for the first time.  It's an honor to sit by and watch his world unfold.

31 for 21: My Way

Sometimes I wonder, with our parade of therapists always guiding Max toward the next milestone, if our little guy will ever get to have an independent thought.  And then this happens.

That would be a box, a stacking cup, a stacking ring, and another stacking cup.  I'm pretty sure this isn't the way our OT demonstrated stacking.

And because we are all about that stacking today, let's add another.

No, it didn't stick.  But he did keep trying to stack random toys for a good 45 minutes today.  So I'll call it a win.

31 for 21: Where We Are Today, Part II

From time to time, folks do ask me what it means, day-to-day, to have a toddler with Down syndrome.  I did this last year, so here's an updated version.

A mix of low muscle tone and delays in cognition mean that Max is noticeably behind other 20 month olds in his skills.  Where others are running, he isn't crawling yet.  Where most have a few words, he doesn't, and he's still unsure about how to use the signs he knows.  He knows how to "army crawl" across the floor, but he'll only do it when he really wants something.

He's been expressing frustration more frequently, lately, and he's also getting more mobile, bit by bit.  Although I certainly want him to grow in his communication & motor skills, I'm pretty sure my life is going to get more difficult as these two skills, in particular, develop.

Max gets an hour each of physical therapy, occupational therapy and speech therapy every week.  On non-therapy days Max & I attend Toddler Storytime at our library and a Parent/Child tumbling class.  He's got a different set of skills than the other kids his age at these programs, but he holds his own.  He loves the one on one attention of the therapists and the energy of the group classes.  Max is the first to clap for his own accomplishments, he knows when he's done good and he wants everyone else to acknowledge it, too.

Max's health is pretty good -- but he knows how to keep me worried.  He spent several nights in the hospital last spring when he had croup, and he's had some ongoing digestive issues.  He's had a bit of trouble putting on weight, so we're now pretty aggressive about feeding him.  Over the summer he got tubes for his ears and braces for his ankles.  These are all small things, none of them exactly caused by his extra chromosome, but all of them complicated a bit by it.  The combination of it all, however, sometimes weighs on me.  I worry about this little guy, and there are days that keeping on top of his health is tiring.

I don't mind getting questions about Max's development -- mostly because I love bragging about him.  He might be chugging along on his own schedule, but I still love talking about how he surprised his therapist by stacking blocks or how hard he's been working to push up into crawling position.  So for those who weren't sure how to ask, this is where we are today.

31 for 21: Buddy Walk

Our Buddy Walk was today -- and it was cold!  I had to skip because of a commitment at work, but the guys went, and brought along one of Toby's friends.

I'm usually the photographer in our family, and so I was glad that Christer remembered to take one photo of our little group of walkers.  I was even happier to see how great that one photo turned out.  Look at Max's smile!

Next year I'm hoping for a clearer schedule, and warmer weather.  Because it was only 40 degrees at noon today, and that made it very hard for me to feel bad about missing the walk.

31 for 21: The Specials

When the doctor said the words "Down Syndrome," my first thought was, "Now my son can never be a reality TV star."

Okay, maybe that's not exactly how it happened.

With the abundance of reality programming available, I didn't jump to watch The Specials--a show about five young adults with intellectual disabilities living in a house in the UK--when I first heard about it.  But with the second wave of publicity as it's second season hit Oprah's network, my curiosity got the better of me.  And at less than 15 minutes an episode, it's hardly a commitment.

At first I was looking for more substance in The Specials.  Who exactly lives in the house with the cast?  How much support do these folks need?  How much independence do they have at work and at school?  Who handles the cooking, the cleaning, the laundry, or balancing the checkbook?

And then I realized, The Specials intentionally ignores all of that.

The Specials isn't about the caretakers.  It isn't about the testing or the IQs or the life skills.  It isn't about inspiring anyone or proving the achievements of people with intellectual disabilities.

It is about friendships and love and having a fun night singing karaoke with your friends.  It is about taking your bestie surfing after his heart is broken, and supporting your friend as she learns her parents are getting divorced.

Like any good reality show, sometimes it's about making a fool out of yourself for love.  Or for lust.  At 19, what's the difference, really?

It's about making this one anxious mama relax and giggle while she takes her afternoon-naptime break.

So kudos to the producers of The Specials for practicing the sort of inclusion we all preach--frivolity and all.  Season One is available to watch online here.

31 for 21: That Other October Celebration

It's only day two, and I'm already posting at night, too tired to think of much inspired to say.  I had a good, long day of working on Halloween costumes for the boys.  Once upon a time I sewed quite a bit, and now Halloween is the only time I really get out the machine.  I know I could buy or scrounge costumes, but making them each year is a little treat to me.  And the treat is so much better when I get some time to work on them early on, instead of at the last minute.

But, after a day of fiddling and problem solving and sewing, I am not much good to talk about anything else.  And so I give you this preview, and a promise of more photos once the costumed festivities (events! parties! even a costumed wedding!) begin later in the month.

31 for 21: Why not?

Why not jump in on 31 for 21 again?  I'm not writing much, here or elsewhere, lately, and I miss it.

So, in honor of this goofy little guy, let's see if I can remember to stop by this space every day this month.  More or less.  Here goes!