Wednesday, January 04, 2006

How to tell friends your new baby has a disability

Interesting discussion on Red State M-word about a couple whose baby was born with Down syndrome, and the struggle they had over how to announce this. It's good to see physicians and other medical professionals talking about this issue, which is generally only a conversation that parents have with one another later on! "How did you tell?" is a common topic at gatherings of parents whose kids have Down syndrome, anyway.

I'd be interested in how people view this on both sides of the announcements, by the way.

If you were once a new parent of a baby who was diagnosed at birth with a disabling condition, how did you (or did you) announce this?

If you are not such a parent, what do you think? Would it be helpful to you to know this about a friend or family member's new baby? Is it necessary?



Anonymous Joan Medlen said...

Hi Mary,

I think this is an interesting question. I can't honestly remember how we told our family when our son was born.

For me, the bigger conundrum is how to then later include additional disabilites--such as autism--that come along?

I can remember when our son was younger, someone in my sunday school class at church told my husband they wished I would "get over" my son's disability. This was during a time when he was losing speech and other skills and becoming quite aggressive. It was two years later we learnd he had late onset autism.

AFter that comment, though, I didn't feel like I could share not only my pain about this new label, but the struggles my family had gone through.

Now days I just tell people who want to know he has Down syndrome, autism, is nonverbal, and for fun I sometimes add that he has Celiac Disease. It's my every day reality. I think it's important for people to know he has more challenges than people with Down syndrome only.

Regardless, how do we share our struggles and talk about "real life"? I guess they didn't want to hear what life is like for us. I don't know. I never asked.

Back to the question: how do you tell people? I don't know.

The discussion on the other blog is indeed interesting!

11:31 PM  

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