31 for 21: Halloween

Or maybe it's more like 21 for 21, as I've completely fallen off the wagon.  Ah, but we've been busy with Halloweening around here.  These photos are from last weekend--any photos tonight turned out dark, blurry, and soaking wet.

So let me introduce Dr. Frankenstein:

And his creation:

31 for 21: Oops, Missed Another

And I skipped another day.  And the post before that was about baby food.  And this post doesn't even have a picture.  So, yeah, I think I'm running out of steam.

But, I must share with you, the most useful thing I have learned from reading Down syndrome blogs:

Take your four year old to the dollar store to buy a birthday present for his dad.  Just like Kelle Hampton.

(Now, come on, you know you went and read through all her archives when you first discovered Down syndrome mama blogs, too.  Admit it.)

Seriously, best idea ever.  We did it tonight.  I can't reveal what Toby bought, but the process was great fun.  Also, this might be the only time you see the words "just like Kelle Hampton" on this blog.

31 for 21: On the Menu

What we're eating these days:

Squeezy packs of baby food (I have completely fallen for the packaging.)
White bean soup
Mashed up roasted veggies
Mashed potatoes
Bits of meatballs
Napkins

What we're grabbing, but not quite getting into our mouths:
Baby puffs (those things are sticky when slobbered)
Rice
Shredded cheese

What makes it into our mouth, but comes back out again just as quickly:
Pasta
Chunks of chicken
Apples
Sweet peppers
Spoons

I realize, writing this down, that feeding a baby is much more fun to DO than to read about.  Sorry 'bout that.

31 for 21: Nine Months

Max is nine months old!

So, what are you up to this month?  You're still a friendly little guy, always happy to spread the smiles and make new friends.  But you're getting a bit more picky about staying with babysitters getting passed around.  (Thanks for interrupting my yoga class, twice.  I get the message, no more YMCA childcare for you.)

You're getting sturdier as you sit--more likely to whine and cry when you get tired instead of falling backward onto your head. (How about we work on transitioning forward, instead?  Really, it would be easier on all of us.)  You're sitting in the cart seat as we shop, and you're steady enough to face forward in the stroller without your bucket.  And still you managed to pull your toes up to your ears when we're strolling around.  You're exploring toys more, banging them around, moving your fingers over them, seeing how they taste and feel and move.  Your favorite perch seems to the the exersaucer these days.  I don't blame you--with Toby running around I'd feel safer up off the floor, too.

You are a big fan of food right now.  Bits of soft chicken or meatballs, baby puffs, pizza crusts, pasta, slices of fruits and veggies--we're adding tastes of finger foods to your meals of purees.  You're remarkably coordinated when you want to get something into your mouth.

This month you rode in another plane--this time to visit mama's side of the family and to meet your little cousin.  You didn't bother to show off your sitting skills much on that trip, though--plenty of family + wood floors meant that you were usually in someone's arms.

This month you slept through your first Buddy Walk, and just yesterday we went to the pumpkin patch with DSANI.  Not even a year old, you're already filling up our schedule and introducing us to new friends.  During this Down syndrome Awareness month, we owe you some thanks for sharing this community with us, kiddo.

31 for 21: Pumpkins

Well, I missed a day.  I'll blame weekends, deadlines, and the first family cold of the season.  We took it easy today, skipped church all together, and finally got our of our PJs late in the afternoon to join our local Down syndrome group at a pumpkin patch.  Photos?  Of course.

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.

31 for 21: Bad Guys

Toby comes home from school every day with stories of his team of super heroes and their fights against evil on the playground.  It sounds mostly harmless, but I wonder about how the team chooses their "bad guys"  From Toby's descriptions, I'm not entirely sure that the "bad guys" are aware that they are a part of the game at all.  Then again, I'm not sure whether the superheroes are targeting real preschoolers, or fully imaginary foes.

For as little concrete information as I've gathered about this game, he certainly spends a lot of time talking about it.  Sorting out who's bad and who's good is serious work for a preschooler.

He's curious about real-life bad guys, too.  His preschool held a lockdown drill at the beginning of the year, which led to lots of awkward conversations about why a "bad person" would be in the school in the first place.  Earlier this week, his school had a real lockdown (while we were out of town) when two 18 year old boys shot at each other just blocks from the school.  One of the teens is in the hospital now, the other is dead.

This summer Toby noticed a "bad man" at the swimming pool.  He was a teenager, with a broad forehead and deep eyes.  One side of his face moved a bit behind the other, putting his eyes a bit off of focus and his mouth in a scowl.  Any adult would look at this teen and label him "disabled," but Toby--drawing on Disney villains and storybook illustrations--was convinced that he meant us harm.  Even after a talk about how all people look different, Toby still eyed the teen with suspicion, ready to use his superpowers to defend himself if necessary.

It's hard work deciphering the real threats from the imagined.   We're trying to raise a little boy who isn't afraid of difference, who sees beauty in all people, who learns not to stick labels of "good" and "bad" on complex human beings.  But then, of course, he'll also learn that the "bad guys" can't always be spotted, classified and neutralized in time.  He'll have to learn that our fears are much closer, much too close.  Someday he'll see that two boys--not good or bad, just boys--can cause more damage than a supervillain.