Thursday, January 24, 2008


In the surfing world, seasoned surfers call new surfers "grommets." Most often it refers to young surfers just learning how to stand and catch a wave, but sometimes the term is used in a derogatory way.

In the Down syndrome world, I'm a grommet.

This was made evident to me on my lunch break yesterday. I was back at my local bookstore, reading a few chapters from a pretty good new biography on Joseph Stalin. After getting my Green Tea Latte, I was heading out the door when I saw three adults with Down syndrome hanging out in the dvd section of the store. I would say they were in their late 20's or early 30's. One woman and two men.

Feeling a bit like a stalker, I wandered close to them to hear what they were talking about.

Woman: "Dawn of the Dead. Ohhh. Good movie."
Man: "No way. Too freaky. This is a good movie." (points to a dvd which I can't see from my vantage point.)

I pretended to look at some dvds for another few minutes, straining to hear their conversation. It's still so new to me. Ian smiles and coos and yells, but I have no idea what he'll be like when he can actually converse and tell me how he sees life.

But something happened while I was standing there, being rude and eavesdropping on these three adults discussing their taste in films. I got caught up in their conversation and, for a few minutes, completely forgot about the fact that they had Down syndrome. It's kind of like when I stopped noticing Ian sticking his tongue out, which happened about two months ago or so. (I noticed one evening that I don't notice anymore.)

It's hard to put into words here, but as I walked out of the bookstore yesterday afternoon, something small, yet substantial, had changed in the way I see my son. And I also realized that I am still a grommet.


Laurie said...

I was just talking with a friend about this the other day. I can't remember when I stopped seeing Ds in Chase and just saw Chase. I love that :)

Glad you had this experience.

Terri said...

It might be good if you could hold on to that grommet thing. There's an advantage to "beginner mind". Being a beginner gives you eyes to see things that others miss.

Elbog said...

You ain't no zaboob, bro. A squid in the tribe, but no pro-bro.
You're goin deep, brudda.

Anne said...

Told ya it would get easier. :-)

Also, anytime I run into a teenager or adult with Down syndrome while I'm at a store, I totally stalk them. I wonder sometimes what they must think of me, this crazy lady following them up and down the aisles, hanging on their every word. Mostly I just want to know what they're like, but part of me really, really wants to hug them, and jump up and down, and tell them all about my little boy.

beans said...

ohh, I am such a little stalker when it comes to kids with downs. I always wonder also if the parents think I am crazy. I usually tell them I have a bro w/ DS, so hopefully they aren't getting too worried.

There was a little girl today in the place we are having a lunch meeting. We realized that she was imitating the one girls with us who was talking with her hands quite excitedly. Her mom thought it was very funny, and so did we.

My brother is so funny when he is out and about. He just turned 37 and he thinks he is completely normal. He thinks the "special" kids are cute and that they need help, but he is NOT special.

It is very interesting to be in the position of having an older bro with DS. I want him to do and be so much more, but I am at the mercy of my parents and what they feel is best.

Kids with DS these days have so many more opportunities, and I am glad you are experiencing some of the great things these guys can do. I am glad you are seeing Ian for the beautiful fun little guy that he appears to be.

Maybe when we are in MN this summer we can meet up! Maybe I can stalk you at some Starbucks or something!

RK said...

I am kind of a stalker too. When I see another kid and parent in the dr office or something, or even the grocery store, I kind of arrange Braska so she's more obvious, hoping to let her grin catch their attention. I stick on that *genuine* nonchalant smile and try to get in their line of sight. So far, no one has taken the bait. I probably should try a more straightforward "hi" or "hello" route...but oh well. I usually end up watching the kid to the point that I worry the parent will get offended that I'm staring or something.

Kim Ayres said...

Just a thought about the tongue, now you mention it - when Meg was wee, we were told that when her tongue poked out her mouth we should gently push it back in, to reinforce the idea of the tongue staying inside.

Now it's quite possible that Meg doesn't have the oversized tongue that commonly accompanies DS, but we've never since had a problem with her tongue sticking out (unless she's being deliberately rude and pulling a face at the same time)

Tom said...

Laurie: It's definitely a good feeling, like maybe things are going to be OK after all.

Terri: I like what Eugene Peterson says about waking up every day and reminding yourself that you're a beginner... There's something powerful behind that.

elbog: Alright, put down the bong... :) Thanks.

Anne: I thought about jumping up and down and hugging them, but I think society frowns on grown men hugging in public, unless you're in front of 10 million viewers on the football field. :) I know exactly what you mean.

Beans: Yeah, shoot me an email when you get to town... I would be interested in hearing about some of the things you wish you could encourage your bro to do differently.

RK: I did that once when I saw another child with ds in a grocery store (pointing my son toward the other parent). Nothing... Don't know what I want to happen anyway, since I'm not much of a talker when it comes to new people. :)

Kim: I tried your advice this morning, and Ian sure enjoyed sucking on my finger... :) Thanks.

rylie's mom said...

When I was a beginner to Ds(when Rylie was a baby) I was the opposite of most people. If I saw a person with Ds I would run the other way. I still don't know what I was so afraid of. I probably missed a lot of great opportunities. Thank God I've changed. Now I have reached out on line and in my neighborhood. Just this last month I've met 3 other families in person and have learned so much.
The first year of Rylie's life she was always at the doctors and we were new to EI, so I felt like I was constantly looking at my child w/ Ds. Once she went to preschool and the doctors visits decreased that when I felt like she was just Rylie my daughter not Rylie w/Ds.

bella said...

Being a beginner, a grommet, is a freedom in its own way. Nothing to prove, nothing to keep up or fear being lost.
And forgetting, this too, is a freedom. Forgetting the ideas or words or definitions because the story, the moment itself, has taken us into its life.
The way you see the world, the way you share it here, it makes me feel not alone.

Tom said...

Rylie's mom: I'm really looking forward to those days when I can go a whole day without remembering anything to do with DS. And, all because of my wife, ( that's a good thing) I'm sure we'll probably meet some other couples one day soon. :)

Isabel: I'm ready to take the training wheels off, but suppose I need them just a bit longer.

Elizabeth said...

I go to a craft club on Tuesday nights at the Y. Last week there was a teenage girl there with DS. She was with her mom. I very badly wanted to say something, but didn't.