Tuesday, November 25, 2008

Down syndrome advocates praise new law

A friend asked me what I thought of Missouri state Sen. John Loudon, and I had to go look him up. Hmm, I thought, weird question. For one thing, I don't live in his district. And I don't agree with most of his policy positions. I wonder why she asked me about him. That's because I hadn't read this article in the St. Louis Post Dispatch: Down syndrome advocates praise new law.

"When Missouri Sen. John Loudon and his wife, Gina, decided to adopt their third child, they knew three things: They wanted a little boy, they would name him Samuel and he would have Down syndrome."

I've sat on this blog post for a little while, because I didn't know exactly what I wanted to say about it. I still don't; this issue is emotional and confusing for me.

I'll start with the easy part, the legislation. You might have heard of the the bipartisan Kennedy-Brownback Pre-natally and Post-natally Diagnosed Conditions Awareness Act. Last year, Sen. Loudon proposed similar legislation here in Missouri, which he called "Sammy's Law." "The law requires medical professionals to provide accurate information on the outcomes of people with Down syndrome and inform mothers with a Down diagnosis of adoption resources."

A lot of people are uncomfortable with this. When we go see our doctors, we want to be sure that we're getting their educated, scientific, medical advice, not something that's politically mandated. I share that concern, for example with regard to telling women certain non-medical things when they seek abortions, or forcing them to watch an ultrasound before undergoing the procedure. That's not medicine; that's politics, and I don't think it has any place in the exam room.

But are two big differences here.
  1. Doctors are failing at their jobs when it comes to telling a pregnant woman that her fetus has Down syndrome. They are spreading fear and outdated/misinformation about Trisomy 21, and sometimes allow their own biases or fear of being sued make it seem as though they are encouraging women to decide to terminate. Boo, hiss.
  2. The language of the bill simply requires doctors to provide "accurate information on the outcomes." No politically motivated specific language is required, and there's no script to read. It's simply requiring physicians to do what they should have been doing already; providing accurate information to patients rather than spreading fear and misinformation.
Speaking of spreading fear and misinformation, the Post-Dispatch article spreads a little bit of that themselves, with this bit: "Down syndrome is caused by an extra copy of Chromosome 21, causing varying levels of disabilities, including decreased intelligence, slackened muscle tone, gastrointestinal problems and heart defects."

That makes it sound like all people with T21 have the above list of disabilities, while that's far from the truth.

But back to Senator Loudon. I think it's great that there are people who want to adopt children with Down syndrome. Really, it's fabulous, and I appreciate that that option was one available to me when I learned that Ellie would have DS. It's not an option I seriously considered, but it felt good simply to have options, which made my decision to have and keep Ellie feel even more like something I intentionally chose to do.

I do, however, feel a little uncomfortable with the idea of choosing a child based on any specific characteristics. I don't think it's always a bad thing. But it's something I need to think about more, because if someone told me that she wanted to adopt a child but only a blond girl, I might wonder if she's really ready to be a parent. Because there are no guarantees when it comes to having children, and I'm uncomfortable for trying to control for too many variables. What if your blond's hair darkens? Would you love her any less?

I am uncomfortable with generalizations about people with Down syndrome, as though everyone with the diagnosis is so this or loves that. What if your child isn't this or doesn't love that?

But I am truly grateful that there are people who are willing to adopt the unwanted, especially those who are deemed "imperfect" in some way and have a harder time finding homes, because they're older (no longer infants) or have a challenging diagnosis.

In the end, I disagree with Senator Loudon on most political issues, but I have a great amount of respect for him too.

Thanks to Flatflo for bringing the article to my attention and solving the mystery about why people were mentioning this guy to me.


Susan O said...

I can solve a little of that mystery for you. In adoption, you are either adopting a (probably) healthy child, a child with correctable disabilities (a cleft palate, say) or a child with long-term illnesses or differences. If you are open to a long-term illness/difference, then you're asking what you're willing to consider. Consequently, there are actually some placement programs that serve only children with Down's Syndrome, and only HIV and only blindness, etc. Many families find it easier to "sign on" for Down's or blindness or whatever, than to go through the process of individually considering each waiting child, researching each potential difference, etc. Some families do say yes to the "consider anything" option--but for those that don't want to go through that, they specify.

I have friends waiting for a Down's child. Since this is the only thing they know ahead of time about this child, they are researching maniacs. Once they have a referral, I'm sure it will settle down into getting excited about the unique particularities of the child.

Sarahlynn said...

Susan, thank you.

"Many families find it easier to "sign on" for Down's or blindness or whatever, than to go through the process of individually considering each waiting child, researching each potential difference, etc."

I absolutely get this. And to reiterate; I think it's wonderful when people are willing consider adopting children with diagnoses or other differences that make them harder to place. I also whole-heartedly support a family's right to decide what they can and cannot handle.

I think my discomfort is with the people who say, "I love children with Down syndrome because these children are X, so we plan to adopt a child with Down syndrome."

This feels like a different motivation to me. Not: I will love a child with disabilities and raise him as part of my family. But: I know that I will love this child because he will be more loving/giving/gentle/whatever. As many as 10% of children with Down syndrome have autism. If you want a child who has Down syndrome because of stereotypes of what you believe that a child with Down syndrome will be like (physically, developmentally, emotionally, whatever) and you get something very different, what then? You might get . . . a kid. An unpredictable, unique kid.

Thinking this through, I think my concern is with the generalizations and stereotypes I often hear well-meaning people use about people with T21, and not specifically with the adoption part.

Sidenote: I prefer "people first" language on this blog, so "child with Down syndrome" rather than "Down's child" is the standard here.

Cate said...

Excellent post. Thanks.

Smithie said...

I have heard of families who already have a child with Down's Syndrome looking to adopt a second child who also has it, and that makes sense to me.

Sarahlynn said...

Thanks, Cate!

Smithie, well, sure. That has little to do with generalizations about people with the dx all being X or loving Y, and I respect it a great deal.

(FYI, it's "Down syndrome," not "Down's.")