Wednesday, September 09, 2009

She Works Differently

Ellie's really fond of one of her classmates. I have been emailing back-and-forth with the little girl's mother - the lead room parent - and after making plans for the Halloween party planning meeting (is this really my life?) I said:

"Ellie thinks [your daughter's] really great, and so do I. Even at this young age some kids realize that Ellie's a little different and are obviously uncomfortable around her. It sounds like your daughter's been really nice to Ellie at school and she must be picking up that inclusive attitude from somewhere. So thank you! (Ellie has Down syndrome, of course, but what that means varies from kid to kid. In Ellie's case, she struggles a little physically - she's weaker than other kids - and behaviorally. Things are harder for her so she sometimes opts out of participating. But she's bright, so she gets it when she's excluded, and that's hard.)"

She replied, "I'm glad to hear that Ellie feels included by [my daughter]. We have talked about Ellie (not in a mean way, of course) and [my daughter] explained to me that Ellie's brain just works differently than ours does, so that is what we say. I hope that is ok. I don't pretend to know all of the correct ways of explaining things to my daughter, but I try to point out how people are similar to each other even though they are also different. Anyway, I'm just glad Ellie thinks my daughter is nice."

I love that this 5-year-old confidently explained to her mother that Ellie's brain just works a little differently. That's true!

Here's my latest metaphor. Have you ever been really really tired? Maybe you're trying to study or balance your checkbook or just finish reading the doggone book for your book club. Whatever the specifics - have you ever been in a state where you can just TELL that you're not quite firing on all cylinders? That your brain isn't making connections well, that your processing time is delayed, that your body is clumsy and not reacting the way it should? You know that something's wrong but you can't do anything about it?

You could be tired or sick or drunk or drugged or aging or injured or disabled or recently returned to Earth after acclimating to moon gravity. You're probably also very frustrated! You're still YOU in there, but you've got this barrier to interacting with to the outside world.

I think life is like that for Ellie, all the time.

She's the toughest person I know. And, especially considering how hard functioning with all the rest of us must be for her, she's also the brightest, sweetest, most giving person around.


Orange said...

Sarahlynn, that's a beautiful tribute to your first-born. Do you think you'll share it with her when she's older?

Sarahlynn said...

Absolutely. In fact, I've mentioned to Ellie that she has "Down syndrome" but I think I should be talking about this with her more right now. I think it's OK to tell her that I understand how hard and frustrating things are for her - and I do - but I don't know if I've ever explicitly shared that things are harder for her.

Jennifer said...

I love reading your blog--it is so insightful! You are such an amazing Mom!

datri said...

Last year, my older daughter, Laurie, then 7, was trying to explain how Kayla has Down syndrome and autism to a 6 year old girl on her bus, and said basically that her brain works differently. Although something must have gotten lost in the explanation since the girl thought Laurie meant that Kayla had NO brain. ::eyeroll::

Sarahlynn said...

Thank you, Jennifer! I try, but I know I fail so often.

Datri, serious misunderstanding, there! Can you imagine what that little girl told HER parents after school?

Tracey said...

What a wonderful wonderful interaction with a fellow mom and an AWESOME kid. On a related topic, have you seen this article in Newsweek?

I think it has relevance for everyone in dealing with people who are at all 'different' from themselves.

It really sounds like Ellie has some great classmates-wonderful!

Christina O. said...

It was nice to meet you (in passing) the other day at the zoo. I hope I didn't seem like a stalker, but I thought you looked familiar and couldn't place you. What's funny is that it was ultimately because of your husband (for some reason) that I realized who you were, even though I couldn't remember your name! Your kids are adorable!

I've been reading your blog since before Ada was born, so it was nice to meet you in person!

Sarahlynn said...

I was so glad you said hi! You didn't seem like a stalker at all. :-)

Sorry we didn't get a chance to chat before hopping on that train. It was very nice to almost meet you, anyway.

Thank you!

Veronica said...

Hi! your blog is great. I've just discover it. I'm the mum of a little girl with down syndrome. We're not at this stage though, Luna's just 9-months-old, so we didn't have these problems of frustration. But you really described it well, I think they really feel like that...
I've started to write a blog too about Luna. But it's in italian (I'm italian...). I give you the link anyway ( and I'll put a link to your blog in mine.

Sarahlynn said...

Nice to meet you, Veronica, and thanks for stopping by! Wish I read Italian, but regardless the pictures of your daughter are beautiful. :-)