Wednesday, July 16, 2014

Coming to Terms with Disability (A Summer Blog Hop Post)

"More alike than different."

I own no less than three tote bags with this slogan. And certainly, I agree with the sentiment. We're all alike on the inside, and all of that. But lately, making my peace with disability has been more about twisting it around.  Because why do we have to be the same to all be valuable?

"More different than alike."

Today at the grocery store I chatted with the deli worker for five minutes about her grandson. He has autism, he's starting Early Intervention. She was proud of her grandson, and seemed happy to talk about him with someone who didn't need to have these things explained, with someone who wasn't trying to fit him into a typical mold. I griped to her about my morning's three-store-excursion to find shoes big enough to fit over orthotic braces. She responded with pity for the ordeal of shopping with small children, not pity that my boy's ankles need extra support. I took my broccoli slaw and went on my way. 

That conversation wouldn't have happened if Max's disability wasn't evident in his face. Sticking next to Max opens all sorts of windows into the differences that are a part of so many lives.

Speaking of the orthotics, they're new this week, and Toby is fascinated. He came along to Max's fitting, and when he saw an empty brace he bounced out of his chair. "I know those!" he exclaimed. "My friend has those! He let me touch them!" Turns out, there's a kid in his class with orthotics, and from the repeated assertion that "he let me" I'm pretty sure Toby has been reprimanded by their teacher for fiddling with them. Another little difference, exciting enough that Toby wanted to be a part of it--even if for a 5-year-old that means putting his hands into someone else's space.

It's a small thing, but learning our way through supporting Max opens our eyes to so many little differences around us.  I'm reminded, when I meet someone new, not to assume similarity.  Listening for their differences -- in ability, in background, in perspective -- make my experience of them richer, and my relationship with them more honest.  Coming to terms with disability means celebrating that we are all more different than we are alike.  My world is getting bigger for noticing the differences.

Tuesday, July 15, 2014

My Connection to Disability (A Summer Blog Hop Post)

I'm going to give this blog hop thing a try.  One, because I literally bumped into Meriah at the NDSC Conference last weekend, but she was running after her kid, and I was running after mine, and also her blog is awesome and I am shy.

And two, because I am clearly not thinking up enough things to blog about on my own.  Writing prompts sound like a good idea.

So, the first topic is "My Connection to Disability."  Short answer?  My son has Down syndrome.

But, I am also aware that my connector is a one-year-old.  At this point, at least, it's sort of a one-way conversation.

I've met some great folks through our local Down syndrome group -- mostly parents of young children.  I've enjoyed reading blogs -- mostly written by moms like me who are brand new to the world of disability.  And we've got a lot to share, and I'm thankful for these connections.  But I often feel that I'm not "connected" to disability, I am orbiting around it.

I hope to change that.  I need other windows into Down syndrome aside from my own son.  And he needs adults with Down syndrome in his life--folks who can prop him up when I've reached the end of my experience.  Folks who can tell him, it's okay, I did this, you can, too.

So my connection to disability is still a work in progress.  It's a connection inspired by my son, but I do hope it won't continue to be defined only by him.

Monday, July 14, 2014

NDSC Convention Recap

My phone was misbehaving.  So most of my photos came from the hotel window, when my phone was plugged in.
We spent the past weekend at the NDSC Convention.  It was just two hours away, and we were curious, and there was a swimming pool in the hotel, so we went.  And now that I'm home I'm feeling a bit re-inspired to blog more than once every six months, but I'm still absorbing enough that I'm not quite sure where to start.

So, for tonight, a few observations from the weekend:

  • The Down syndrome community is a big tent.  I want this to be a good thing, but sometimes it is overwhelming.
  • Educators, therapists, researchers -- these folks speak my language.  It's good to get all nerdy and just sit in a workshop and soak up information.
  • That said, it's also overwhelming to hear passionate people talk about their research or their perspective.  Just because someone is an expert doesn't mean they've got my family figured out.
  • And sometimes it was hard to pick workshops, because we don't know what specific challenges are ahead for us.
  • I kept noticing the moms of adults with Down syndrome.  Gray-haired ladies juggling schedules, waiting outside of bathrooms, beaming at their grown kids.
  • I found it easy to imagine Max as one of the adults I saw at the conference.  I found it harder to imagine myself as one of the older moms.
  • Every time I meet an adult with Down syndrome, or hear their story, I feel like my world, and Max's world, get just a little bit bigger.  I'm a bit ashamed to admit this, because in my mind I know that the possibilities are endless.  But every time I see a possibility with my own eyes, it makes the future so much more real.
  • I want to meet more adults with Down syndrome.  I really want for Max to have role models with Down syndrome in his everyday life -- not just as speakers at conferences and faces in documentaries.
  • I want to go back to downtown Indy sometime when we don't have conference sessions to attend.  Because it looked like a great place to walk around & explore.

We left the conference early because Max got sick.  I was bummed to miss the last sessions, and really bummed to miss the ball game--I was hoping there'd be a little more time to socialize with other families.  After a sleepless night, though, we figured everyone would feel better back at home.

And so, our first NDSC Conference ended.  I doubt we'll be attending any more conferences for several years.  But, if Max is interested, I would like to go again when he's a teen.  The teens and adults with Down syndrome were clearly having a blast, and watching them made me remember church & school conferences I attended as a teenager.  For now, I'll just sit on this weekend a bit longer, and maybe try to expand on some of my observations in the coming weeks.

Monday, March 17, 2014

It's Not Just About the Future Moms

I finally clicked on that “Dear Future Mom” link that keeps popping up in my Facebook feed.

Yeah, it had me sobbing.  The variety of accents and languages was beautiful.  The message that it’s going to be hard, but it’s also going to be good, hit home.  But I’m still not interested in sharing that link on my Facebook page.

Because they weren’t making that video for me – the already-mom of a child with Down syndrome.  And they weren’t making that video for my son’s friends and acquaintances and teachers and family.  That video was aimed at the future-mom, the mom with the prenatal diagnosis, the mom who is deciding whether to keep her child or have an abortion.

A tear-jerking video aimed at mothers in one tiny little window – that space between hearing a diagnosis and making a decision.  That’s a very short-sighted look at what it means to bring a kid with Down syndrome into the world.  Like too much pro-life propaganda, it focuses too much on just getting the kid born.

I believe that the best way to help parents with prenatal diagnosis make their own, informed, decision is to fight for the inclusion of acceptance of people with all sorts of disabilities throughout their lives.

Because if you’ve known people with intellectual disabilities – if you’ve shared school rooms and workplaces and bus seats and conversations and friendships – well then of course you’re not going to decide to abort a baby with Down syndrome.  This decision doesn’t have to start and end with a mother’s surprise, grief, and guilt.  The decision to welcome people with Down syndrome into our communities starts long before conception and lasts throughout the child's life.

Thursday, January 30, 2014

Bedtime Musings on Infinity

Tonight's bedtime reading inspired the question "Who is God?"  And as we talked through some possible answers, Toby happily transitioned into questions about "How big is outer space?" and "What is the biggest number?"

Through it all, he had this great big grin on his face, and he was snuggled up in his blankets looking oh-so-cozy and content.

This is a little boy who knows he is a tiny speck in the universe.  Call it God, call it numbers, either way it is big and he is small.  And he seems to find that both awesome and comforting.

Thursday, January 23, 2014

More Animated GIFs

This is way too much fun.

Seriously, Google, you are not helping my habit of taking way to many of the exact same shot.

Carry on.  Nothing to see here but babies making faces at the camera.

Wednesday, January 22, 2014

One Year

One year old.  Wow.  Time, it is flying.

You might have noticed that we missed your 11 month update.  Y'know, I think I remember doing the same with Toby, back on another blog, 4 years ago.  The first baby months are full of getting-to-know each other, new surprised every month.  And then, sometime around a year, the surprises slow a bit.  There are fewer firsts to marvel at, fewer milestones to note, fewer changes as we all settle in.  You're part of our everyday now, kid.  You bring some great sparks, but mostly we just can't imagine our family before we were 4.

The last two months, of course, did include lots of firsts.  First Christmas, and all the other surrounding holidays.  First day at daycare--just a few hours at a friend's in-home setup, but it still feels like a big step.  First blizzards and snow days--we've had lots of time this month with our whole family snowed in.  After our Christmas travels I think you have now officially met all of the members of our family.

You're learning how to insert yourself into our conversations more and more--waving hello and bye-bye to everyone, cheering and waving with excitement, accidentally making the sign for "papa" and then grinning from ear to ear when the motion makes us say his name.

Oh, and straws!  We've been practicing with a straw, and you're getting it!  This is huge because: 1) You are awesome and it's fun to watch you try new things.  And 2) Once you figure out how to drink some milk through a straw then I can spend more than two hours at a time away from you!  You've got a distinct technique with the straw that is, um, noticeably influenced by your time spent breastfeeding.  Whatever, dude, independence is awesome, for both of us.

I'm a bit embarrassed to admit that your favorite toy these days is, well, cords.  You're remarkably adapt at finding them, especially since you're not scooting or crawling or in any way reliably mobile yet.  At Christmas, your favorite part was the ribbon, which is kind of like a cord, only without the electricity.  And at your birthday party your favorite part was the tissue paper--which is kind of gross when you drool on it, but at least it is not a choking hazard.

Yesterday we celebrated with cake and family and boxes full of tissue paper.  The look on your face when we started singing "Happy Birthday" was priceless--you were concerned and confused by the strange cultural custom that had overtaken your family.  You tasted some cake, but mostly you liked squishing it between your fingers.  You're stuck in the middle of a cold, so there was a bit more snot than anyone really wants on their birthday, but overall you seemed pleased with the attention.  And the tissue paper.

Toby surprised me with his excitement about your birthday.  All day he was making cards for you--and that's saying something considering the fight we usually have getting him to make one obligatory card when he attends friends' birthday parties.  He made you a little picture album and recorded his voice on each page.  The idea was that he would make up a story or tell you something about the people in the pictures.  But every time he turned on the microphone he just started in on the "I love you Max, and I love you very much, and I love playing with you..." and by the time he got around to narrating the pictures the album would beep and the recording time would be up.

Happy Birthday, One Year Old!  We all love you very much!