Saturday, October 3, 2015

31 for 21: Awareness

For the first three days of October, my Facebook feed has been full of awareness.  Facts and stories and reposts and reminders.  It is Down syndrome awareness month, after all.

I'm not exactly sure where I fit into this all.

It's not that I mind having opinions.  I have quite a few opinions, and I'm not shy (or even particularly socially competent) about sharing them.

It's personal, certainly.  While it might be fuel for some, for me it just makes it harder.   Last month we had our first meeting with the school district -- maybe that is worth it's own post someday.  Let's just say that while I have all sorts of articulate opinions in the abstract, when it came down to trying to advocate for my specific child and the specific options available for him, I quickly became a blubbering mess.

It's also not personal.  I'm not the one with Down syndrome. And the little guy I'm advocating for is 2.  He doesn't have too many opinions yet--at least not beyond his picky taste in food and music.  Any advocacy I do is with him in mind, and he hasn't told me yet how he wants me to advocate.

I'm not sure exactly what steps I want to ask others to take.  I'm not even sure what steps I want to take.  There isn't a cure to find or a bill that needs to be signed or prayers that need to be said.  There's research I could be learning about in all sorts of directions, but mostly I just want to sing silly songs with my toddler.

So to the rest of you, keep up your awareness building.  I'm watching and figuring, and waiting for some piece of this whole advocacy thing to set me on fire.  Until then I'll keep on wondering if I'm doing enough, and keep on learning about Down syndrome one day at a time.

Friday, October 2, 2015

31 for 21: Brothers

6-year old Toby came home today with a picture he drew of "being a good citizen."  And he explained it to me.

"This person is saying 'ouch,' and the other one is saying 'hahahahahaha.'"

Wait, what?

"Um, Toby, how does that show you being a good citizen?"

"That's me saying 'ouch,' and Max laughing."

Right.  Because that's how the boys entertain each other.  Toby encourages Max to hit him, and Max does, and then they both topple over laughing.

Or take the other night, when Toby jumped out at Max, and scared him, and caused some real tears.  With Max in one arm I turned to Toby.  "You scared him," I scolded.  "What can you do to make him feel better?"

Toby shrugged sheepishly. Max, however, took a breath, stopped crying, and started performing the actions to "The Itsy Bitsy Spider."  Well, there you go Toby, that's your penance.  Start singing.

And then there was the day at the park, earlier this summer.  There was a van full of young adults with various disabilities also stretching at the park.  Most were hanging out on the swings, chatting with their chaperones.  But two flirtatious teens were playing tag on the climbing equipment.  Toby joined them.

On the way home Toby asked, "Did that guy have Down syndrome?"  Yes, I said, he did.  "I thought so.  That is why I was on his team."

I don't think Toby quite figured out that the guy wanted to be caught.  But it's good to know that Toby is proud to be on Max's team.  For now, goofy games and silly songs will do.  He's got some time to learn how to be a proper wing man.

Thursday, October 1, 2015

31 for 21: Hello World!

I'm back!  It's been a whole year since I've stopped by the blog, but I didn't forget about October.  Once again I am going to attempt to write something on this blog every day during Down Syndrome Awareness month.

We've got some new things going on around here.  Max is 2 1/2 now.  He's considering walking, exploding in his signing, inserting himself into our jokes and comforting us when we're upset.  He loves music and rhymes and routine.  He's not a fan of fruits or vegetables, or of sleeping through the night.  He started preschool a month ago and we've started talking about "Transitioning" from EI to the school system.  I'm itching to write down a few things, and although I didn't miss blogging I think I'm good to stick with it for the month

Last night I read back over last year's posts.  That was when I discovered that all of my pictures from old posts are missing.  Last spring I changed the way I was backing up my photos from my computer and phone, and in the process I think I deleted the google directory that had the blog photos in it.  Oops.  I still have the photos backed up elsewhere, but I don't see myself finding time to go back and reinsert them in the right places.  I'm bummed, because the photos were a big part of the story I was telling.

It seems the only solution is to start adding more photos.  So, welcome October, welcome new readers, and here we go!

Friday, October 31, 2014

31 for 21: Imagination

I think I've posted about this before, but as we reach the end of our month I think it deserves repeating.  Every now and then, the interwebs are good for my imagination.  And that is why I joined in to the 31 for 21 challenge this year.

I haven't spent as much time reading blogs about Down syndrome lately as I did that first year.  But I've tried to make the rounds through the 31 for 21 participants this month.  As before, it is fun to just see the variety of families represented.  Some feel like kindred spirits, others I probably wouldn't have read if it weren't for the Ds connection.  Seeing so many options of what families with special needs children can look like keeps me from settling in to one idea of what Down syndrome will look like in our life.  Peeking at other families keeps my imagination healthy.  Sometimes I'm inspired, and take away an idea or a hope of "Yes! I can do that!"  But most of the time I don't really want to copy what anyone else is doing.  I'm just happy know that our family fits in to the mosaic, one of many.  We're just figuring out one way of the many, many ways to walk this path.

I write because I have fun writing, and I have fun sharing about my family.  But I also write to give back to the internet community a bit.  For all the ways other blogs have expanded my imagination, I offer a picture of our life in hopes of returning the favor.

So for the past month I tried to take on the challenge of sharing us consistently -- the worries, the achievements, the celebrations, the everyday.  I don't think there's anything unusual or interesting or inspiring about our family.  But we are one of many, and so we are a part of something special.

Thursday, October 30, 2014

31 for 21: And Again

Another skipped day yesterday.  Oh well, my track record has been pretty good this year.  Again, I blame it on the Royals.  I really hoped to post a "yay Royals" post after the game last night.  But then, they lost, and I just didn't have the energy to bother with it.  After staying up late for the game we are all a bit low on energy this morning.  Thank goodness that I took way too many cute photos at the pumpkin patch this weekend.  I'm getting a lot of mileage out of them.

If I can pull myself together I'll try to make a real post, with real opinions & stuff, for the final day of October.

I might be tired & a bit sad for my Royals today, but it was totally worth it to see them in the World Series.  I'm already looking forward to 2043 when they can do it again!

Tuesday, October 28, 2014

31 for 21: I Almost Forgot

But I didn't.  So here's my post.

Yes, you know it's the end of the month when this sort of slack counts as a post.  But whatever.

If you need me, I'll be watching baseball.  Go Royals!

Monday, October 27, 2014

31 for 21: Following

Keeping a closer eye on the internet's Down syndrome community this month means that I've caught a few references to an article written by a mother of a 50-year old with Ds.  According to the headline, even today, she thinks abortion would have been an easier road than raising her son.

I haven't clicked that link.  Maybe because the sensational headline feels like click-bait.  Maybe because I'm not sure what there is for me to learn from someone harboring that sort of regret.  Maybe because the whole issue is so seeped in politics that I don't trust the internet to contain such sadness.  Maybe because I don't want to revel in self-righteousness after reading a short statement out of a life I have not lived.

But I did click on this link, this response.  And I'm glad I did.  It's an incredibly well-written reminder of how difficult it is to walk in another mother's shoes.  And it's a reminder to all of us touched by disability to remember the debt we owe to previous generations.

I'm thankful for those who went before us.  Who made it possible for me to bring my son home, who opened the doors of our neighborhood school, who insisted that he has a place as an adult in our community.  They didn't always know they were pioneers at the time.  Like most of us, they were just stumbling along trying to do the best they could for their kids.  Often while the world around them was telling them that their kid didn't deserve the best.

Someday, perhaps, I will be more open myself to hearing the stories of the parents who sent their children away.  For now, I am thankful for the parents -- sometimes flawed and all-too-human -- who made my son's road, and by extension my road, a bit wider.