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.