31 for 21: Goofballs

A quick Friday photo of my goofy little boys.

31 for 21: Telling the Older Sibling

After we learned about Max's Down syndrome, we fretted a lot about how to tell Toby.  And we screwed up.

We wanted to be honest with him, so we told him as soon as we knew.  Poor kid, he didn't have any preconceived notions about Down syndrome.  He just knew that his brother was in the NICU, and he couldn't visit, and he was scared.  He decided that Down syndrome was the reason for Max's hospitalization, and he cried when he learned that Down syndrome doesn't go away.  It took a long time to untangle the permanent Down syndrome from the temporary hospitalization.

But it did untangle, eventually, and we figured out new ways to screw things up.  Like when a lady at the grocery was harassing me about "Isn't he walking yet?" and Toby very slowly explained to her, "He has Down syndrome.  That means that he learns things more slowly than some babies."  Yeah, schooled her.  But he noticed my smirk at his answer, and knew he'd done something clever, and so he started telling EVERYONE that Max had Down syndrome.  People in line at the post office, moms at the park, strangers on the sidewalk.  How do you stop that without making it sound like Down syndrome is a bad thing?  (Hint: we told him that Down syndrome isn't the most important thing about Max, and challenged him to list other things he could tell people about Max.)

So, now that we have established that I am in no way a trusted authority on the matter, here are my top five tips for telling your older kids that their sibling has Down syndrome:

1) You're going to screw this up.  And that's okay.

2)  This isn't a one-time talk, it's a talk that comes along in bits and pieces.  Sometimes you'll need to initiate some new piece of information, but often the questions come up in conversation.

3)  You're going to mess up about half of those little talks, too.  And that's okay.

4)  How you answer your kid when they ask about differences outside your family also shapes the way they'll see the disability inside your family.  Remember that when the awkward questions come:  Why is he wearing that?  Why does she walk that way?  Why does one kid in my class have an aide?  Why does one kid in my class get in trouble all the time?  (Hint: My new favorite answer to questions that are inappropriate in public is "I don't know, we'll have to look that up on the computer when we get home.)

5)  It's going to turn out okay.  I've known a few siblings of people with Down syndrome or other intellectual disabilities.  And you know what?  Without exception, they are the most understanding, accepting, honest & caring folks I ever talk disability with.  They get it, better than parents, better than clinicians or teachers, they really get what it means to include someone with a disability--warts and all.  Whatever rock we hit along this road, I have faith that Toby's always going to know a little bit more about what it's like to be Max than I ever will.

31 for 21: Higher!

We are still all about the stacking around here.  Throw in more and more copying of sounds and some scooting that looks suspiciously like crawling.  It's one of those weeks where everything is changing at once.

Now if he could just figure out the sleeping at night thing, I would be one proud mama.

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.