Saturday, October 6, 2012

Education...not castigation

On occasion, I am asked to speak with parents who don't already have children with Down syndrome but want to adopt a child with Down syndrome.  A couple of years ago, I spoke with a kind, extremely well-educated and bright mom on the phone, trying to talk through some concerns she and her husband had about a beautiful little girl from China. The social worker who was writing their home study had filled their heads with horror stories about kids with Ds and insisted they should seek a healthy child instead.  She didn't feel like the social worker really knew what she was talking about and had sought advice from an experienced parent (but got me instead).

As the conversation went on, she asked a question about "Down syndrome children." She quickly corrected herself and said, "I meant children with Down syndrome." Just as quickly, I laughed and told her it was no big deal.

She then relayed that she had already received ugly private emails from the People First brigade in response to her VERY FIRST POST on the Reece's Rainbow Yahoo group where she had made the apparently fatal mistake of asking a question and not using People First-approved terminology.

A wonderful family, who did not already have a child with Down syndrome, committed to adopting a little girl and had some questions as a result of inaccurate information given to them by a social worker. Rather than surrounding this family with love, support and accurate information, she was shot down for not using the right jargon.

As parents of children with Down syndrome (see, I can use it properly), we must be willing to show some grace to those who don't have access to the preferred way of speaking about our children. As my wise friend Ashley always reminds me, nothing will shut down a person's interest in our kids, in adoption, in whatever arcane place we hang our hat, than being censured for speech.

They never adopted the little girl. The shunning from people who should have known better, in tandem with the social worker's bleak forecast for their future, was too much. 

(Two years ago, during Down Syndrome Awareness Month, I posted a different version of today's blog post.  So if it seems familiar...)

1 comment:

Hevel said...

I have been thinking about this post, and I am thinking that the Down's Syndrome community is like many other professional and non-professional communities, that use a specific jargon and expect everyone, who appears, to internalize that jargon. It's liek the Christianese spoken on some forums, the Yiddish thrown in by us Ashkenazi Jews when we talk, the 3 letter abberviations so popular in IT... A newcomer needs to be able to learn them before they can be expected to use them, but unlike IT guys, people in the DS community are emotionally invested and find it personally offensive when an outsider enters their circles and shows this uninitiatedness.