Comments on: “Mommy, why do I have Down syndrome?”

By: Amysilverman

Amysilverman — Wed, 14 Mar 2012 14:34:01 +0000

Kris: I so relate. Sophie is obsessed with being a mom, too. Annabelle not at all (not obsessed — she talks about having a couple kids, but never was into baby dolls and all the accessories like her sister, who recently told me she’ll have nine kids).

By: Kris

Kris — Tue, 13 Mar 2012 20:33:11 +0000

I love this post! My daughter has Turner syndrome, but looks and behaves/learns like her typical peers (she is smaller than most 10 year olds though). Her ‘differences’ come up when we discuss things like becoming a mommy (her lifelong dream). Her syndrome makes it very unlikely that she will ever get pregnant or give birth. When these conversations occur she will say “Why did I get Turner syndrome?” I try to be philosophical about it with her, using pat phrases like “God makes us all different but special”, but I’d love to throw in a “Fuck if I know, Kate”.

By: Anne

Anne — Sat, 10 Mar 2012 04:19:14 +0000

My son, Nick, is 9 and been in a self contained class for 3 years. Last year was the first time he had any classmates with DS. Out of his class of 11 there were 4 boys, including Nick, with DS. He bonded immediately with those 3 other boys. I don’t know if it was that he’d finally got to that developmental point or what. But he still talks about them even tho 2 of the 3 are no longer at his school or in his class. He ran into one at a SO bowling event and talked about nothing else for days.

By: m stevans

m stevans — Fri, 09 Mar 2012 05:15:31 +0000

amy- please don’t feel like it was your “old” eggs. my daughter was 19 when she had my gdaughter emma- who btw is the light of our lives. i know everyone seems to say this, however- she has opened the eyes and hearts of our entire family. p.s. love your blog!

By: Amysilverman

Amysilverman — Thu, 08 Mar 2012 18:05:27 +0000

Interesting question about books — you know, I’ve not found any kids books about DS that I think would work for teaching Sophie about it. There are some sweet books (my favorite is “My Friend Isabelle”) that I think are great to show the kids’ peers…. But they really are about acceptance of kids with differences, not directly about DS. And there are some that are TERRIBLE. I’m sure there are some I’ve missed. Hey, big congrats on the upcoming arrival — I’m terribly behind on my blog reading, clearly! I think it will be super easy for Archer’s sib — Archer will teach him from day one. I really don’t think there’s a book that could teach Annabelle anything she doesn’t know already, save some detailed science. She could write the book at this point — I am biased but I think having a sibling with DS has made her infinitely wise on a lot of levels…. And patient. (Usually.)

By: jonashpdx

jonashpdx — Thu, 08 Mar 2012 17:47:47 +0000

yup, “some science” sounds good to me. my wife and I have been wrestling with how to talk about Ds both with Archer (who has Ds) and how to introduce the topic to his new little brother when the time comes…

Amy, if you or any of your readers have any resources (kids’ books and the like) that you can recommend, I’d love to hear about them.

By: TUC

TUC — Thu, 08 Mar 2012 13:57:44 +0000

I am not looking forward to this question. I think your off the cuff answer to her was actually the best one

By: Cole

Cole — Thu, 08 Mar 2012 13:03:24 +0000

I won’t speak for all people with Ds, but I totally disagree with Ray on this one- inspite of what he’s read. It’s not just hope- people with Ds are capable of knowing. There’s just to many ways of knowing- whether it can be articulated or not- why I stalk every almond eyed faces I see in public, I don’t have words for it when it happens- but there is something there. They’re capable of knowing and reason. I’m also with you on Fuck if I know Sophes…I think it’s the most accurate…

By: Cheryl Fisher

Cheryl Fisher — Thu, 08 Mar 2012 01:33:49 +0000

Amy, I am with you on this one.
I remember taking Madeline to Walmart where (not surprisingly) she saw a door greeter who just happened to have DS. The two met eyes – then held them as we walked away.
I remember coming home, telling John, that there was some “magical connection” (Which, even as I type this STILL has the hair on the back of my neck stand).
Yes, I believe that, somehow, they know they are unique – and, seeing others like them, makes them feel connected. Why wouldn’t they feel this way? Don’t we all feel “connected” to people who look like us, act like us, wear the same clothes as us? If the general population calls attention to the “faces” that our babes wear, wouldn’t it make sense that THEY recognize their own face on someone else? Stick with what you believe. I am sure Ray is wise in a wonderful way but, from one mom to another, we need to find hope in the littlest corners of our own minds sometimes.

By: Robert Polk

Robert Polk — Wed, 07 Mar 2012 19:01:33 +0000

I’d much rather leave an affirmation here, but that’s tough for this post.

Our egg was only 25 years old; I surely do not consider 36 to be a selfish risk, so I’d yank that thought from your mind if I could.

Our high functioning adult with Downs has been quite aware of his difference since his early teens. Once out of high school, he has adamantly refused any “special” activities and acquaintances, preferring “normal” community and people. He becomes grumpy and sour when his predicament is brought up in conversation.

The grumpy part is due, at least in part, to the ambience of his particular living situation (Okay, he lives with his mom, whom the world is usually oppressing in one way or another.)

From your writings, your girls are a good bit cheerier about life and such. The Sophie you describe does and will grasp the differences, but I suspect without the gray cloud that hovers over my son.

I’m encouraged about all this for all of you.