Monthly Archives: June 2014

Thoughts from Room 8

It’s 3:17 am.

I’m sitting in the emergency room. As I drove here, I passed the church of my childhood and I remembered how often my dad had to go out in the middle of the night to respond to the church burglar alarm. Never once was there a burglar. Never once did dad hesitate to go check out another false alarm. I always felt like my dad would protect me. It wasn’t his fault I found the world to be a big, scary place.

Each time I’ve come to the emergency room, it hasn’t been a false alarm. My heart breaks. Just like it wasn’t dad’s fault, this is not my fault. And yet, I’m not sure I’ve done anything harder than stand by while someone makes their own choices that do not serve them well.

The doctor thinks we’ll be able to leave at 4, that it will be safe by then. We will leave behind that little crying baby girl down the hall, all the lights and sounds of the E.R. and head home where we will see if “I’m really sorry” lasts.

I’m numb because of what else will come in response to this night. I’m thankful that of all things today, I drank some iced tea, which is why I’m even able to be awake in the middle of the night. I’m tremendously grateful for the emergency personnel and the doctors and nurses.

May this be a turning point.

Why I’m not going to the National Down Syndrome Conference

(Note: a truncated version of this message was distributed owing to Blogger behavior on certain iDevices. This is the complete post.)

I’ve been seeing Facebook posts from excited people talking about the upcoming convention in July. The early bird deadline is today. But I’ve decided not to go.

(This post would probably be a lot more popular if my reason was owing to disagreeing with the official position of someone who is speaking, or with the vision statement of the NDSC. However, I’m just not much about controversy. I tend to think that both sides are worth listening to in *most* cases. My reasons for writing have to do with my own experience, and my hope here is that my experience will resonate with someone else.)

My file cabinet, inbox, reading list, desktop and a box are full of materials on so many aspects of Down syndrome. How to teach reading, kindergarten readiness, inclusion best practices, oral motor tools, lists of apps, apps, physical considerations, speech and language development. I could probably throw my own convention!

I think the ongoing challenges (opportunities, in the positive thinking parlance) take up a tremendous amount of energy for me. I can see how extroverted moms and dads might really thrive in the convention atmosphere, but I think my brain might just pop if I try to put too much more info in there.

Maybe the biggest challenge (opportunity) for me is to actually use my resources with any consistency. I often say that if Kepler had been our first child, he’d be being raised differently. More lessons, more teams, more play dates, more therapy, more deliberate educational activities at home. But, well, with him being our fifth, and coming along when I was losing energy rather than gaining it, I can occasionally accept my more lackadaisical, laidback parenting and recognize that Kepler is a happy, well-loved, smart kid.

More often than not, though, especially in environments such as a convention, I become aware of how very lackadaisical and laidback I am and always wonder if his speech would be more intelligible if I were doing more; if he might be reading already if I’d followed through on all the reading resources I know of. So events like conventions just seem to drain my energy.

It finally occurred to me recently that it might be a great idea for me to hire a babysitter sometimes. I have had several built-in babysitters, but Kepler adores being the center of someone’s attention, which is what he gets from a hired babysitter. What a relief to discover that I don’t have to do every. last. thing. myself, that babysitters can even put Kepler to bed! That’s a step in the right direction to being able to be a little more free for events such as a convention. (Of COURSE Greg puts him to bed sometimes; he just travels a lot.)

The thing I would enjoy about something like the convention is the possibility of finding a new heart-to-heart friend who understands life with Ds from the inside. Between all the moving we’ve done, Greg’s traveling for work, and homeschooling, many friendships have faded away over time, and have been replaced with e-friends. These days, making new friends IRL seems like a challenge indeed.

But if parenting has taught me anything, it’s that I am resourceful and creative and persistent. Simple next step is to invite a mostly online friend to get together! It’s not like I have to plan a 200-person catered affair to get to know someone!

I’ve already got two people in mind.

Tl;dr: Writer is on information-overload, but social-underload.