Monday, August 10, 2009

Special Friends

I wouldn't have a child with Down syndrome, a woman recently told me. I mean, I have other children to consider.

Every family must decide for itself what it can and cannot handle. And it's true that any additional child diverts "resources" from existing children. In some ways, a child with special needs by definition requires more "resources." But such a child is also just that - a child - and brings special gifts as well as special challenges.

Ada and I arrived early to pick up Ellie from her last day at Camp Kirkapresqua (a week-long "ECO-Justice" day camp). We stood in the doorway to Fellowship Hall, watching the Kindergartners enjoy their last music class.

"That's my sister!" Ada proclaimed proudly to any and everybody who walked by as we waited.

In the car on the way home, I didn't point out the excavators, horses, fountains, or anything else we passed. The girls were so busy talking and giggling in the back seat; I didn't want to interrupt.

A lot of the freight we associate with having special needs is our own, not our children's. Until they learn differently - generally from us - kids with special needs are just other kids to them. Ada already knows that there are ways in which Ellie is different from her. Ellie has blond hair while Ada's is brown, for example, and she needs help putting on her shoes.

"That's my sister! That's my best friend!" she tells me.

And that's really all that matters.


Jennifer said...

That's awesome! It is sad that some people have such ridiculous prejudices. I am pregnant right now, and I feel like having a child with ds is mild compared to the many other problems that our child could possibly have!

RobMonroe said...


Sarahlynn said...

Jennifer, congratulations on your pregnancy! Ellie's First Steps therapists told me that "if you're going to have a child with a disability, you really hit the jackpot." At the time I wasn't ready to hear that and it rang hollow to me. But later . . . yeah, I get that, now. Not only because of who Ellie is, but also because I've watched other parents go through such horrible difficulties with their own children.

Rob, :-)

Wendy P said...

Yep. I totally agree. In our family we say that we are all kind of the same and all a little bit different. Jackson has blue eyes and no one else in the family does. Kira has Down syndrome and no one else in the family does.

I love your blog and your perspective - thank you!

elissa said...

your girls are so beautiful!

Anne said...

Recently, an old friend we hadn't seen in some time, complemented me on how my my older spoke with such obvious love and affection for their little brother with DS. A part of me was flattered but another part realized it wasn't a big complement because Nick is so infinitely lovable.

I know my older two don't resent their brother and he really isn't a drag on the family. I can't think of anything we don't do because of Nick.

Anyway, hopefully, they'll still feel that way if the responsibility for Nick's care shifts to them as adults.

Sarahlynn said...

Wendy, I really like that. It's true. In some ways, having a child with T21 is a little like having a child who's biracial. She is part of our family. She's also part of another group that I can never fully belong to. All children develop their own identities separate from their families at some point. Thanks. :-)

Elissa, thank you! (I think so, too.)

Anne, the responsibility issue is one we've certainly talked about a lot, especially with regard to having additional children.

And you're right. Why WOULDN'T Ada love her sister, and vice versa? Of course, they also fight like cats and dogs sometimes.

We're very careful not to "coddle" Ellie too much or place additional burdens on Ada (there are already things Ada can do better than her big sister) but I'm sure we'll have to be increasingly careful of that as time goes on.

Ellie needs to develop her own independence, and Ada needs to be allowed to be a kid and a sister, not a caretaker. (That dynamic is obviously a little different with older siblings as in your family.)

Barrie said...

This post choked me up. I love it when my kids really appreciate each other.

ccw said...

They are beautiful girls!

Sarahlynn said...

Thanks, CCW. And welcome back from vacation!

Barrie, watching my children interact with each other was the thing I most looked forward to as a parent. And it's even better than I hoped it would be. :)

datri said...

Love this post! Anyone who uses the excuse you mentioned for termination, needs to know that siblings gain so much!

Sarahlynn said...

Thank you. :-)

I think using "the kids" as an excuse is often the parents making themselves feel better because of a difficult decision they don't want to make on their own account.

Fear of the unknown . . .

Tracey said...

Sarahlynn you just moved me to tears. I cannot imagine saying the comment that woman did, it just eats at me in a way I would not wish on anyone. The picture of your girls together is priceless. I love that the girls are so close and I hope that my kids will hopefully be the same way with each other. When they get along, the world is rainbows and light. *hugs* to you for having to bear first hand the beastliness of people who should know to keep their idiotic views and bigotry to themselves.

Sarahlynn said...

Tracey, poor Ellie has a couple nasty bruises from where her little sister bit her hard. It's not all rainbows and light here, either. :-)

The bigotry bothers me from both sides. There's a woman at The Lodge who always insists on talking directly to Ellie - never to Ada and rarely to me - asking her pointed questions and insisting that Ellie answer (her name, her age, if she had fun swimming, etc.). She's trying to be "inclusive," but she's singling Ellie out. Frankly, it's a little creepy and a lot annoying - Ellie's usually in a hurry to get to the water and doesn't want to stop to chat with a stranger. (Nor do I pressure her to do so.)

Today this woman - global warming woman from the above post - treated me to a mini-lecture on her beliefs about how all life is sacred, and Good For You, for having a child with Down syndrome, she's a gift from God, etc.

I responded the only way I felt I could:

Both of my girls are a gift and a delight to me.

Maya said...

Beautiful post, wiping away some tears. I worry and think about this all almost daily, what affect will her brother having DS have on my daughter (she's an Ellie too-great name!). But now that they are getting a little older I am so enjoying watching their relationship blossom. They're friends! They laugh and talk together. They play together. And they aggravate each other just like siblings should. Who knows what the future will bring, in terms of their relationship, but who knows what any sibling relationship will be?
I can't believe that woman said that to you. People are just clueless. It's times like those I wish I had an awesome comeback, but I never do.
Your girls are just beautiful.

Sarahlynn said...

Maya, thanks. :) My hope is that having a child with Down syndrome will make Ada more patient, more understanding, and more accepting. I hope the same of the students who have Ellie in their classes at school.

Both of your children are beautiful as well, and there's something truly magical about Leo's smile. :)

Anonymous said...