Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #18: Encourage doctors to get it right

Did you know that several states are working to pass laws right now that would require doctors to give current, unbiased information to parents who are given a Down syndrome diagnosis for their child?

If you think like I do, you might wonder why we need such a law.  It seems odd, doesn’t it?  Why wouldn’t a doctor provide parents with accurate and up-to-date information about this diagnosis?  Why wouldn’t you expect that doctor to know what he is talking about and trust that he is giving you the most current data?

Well, sometimes they don’t.  Actually, many times, they don’t.  Page through the book Unexpected and you will hear lots of stories about medical professionals who got it wrong.  I believe that ours got it right.  And I believe that part of why they were able to communicate so well with us is because we have some groups that really work hard to educate medical professionals on what life is like now with a child who has Down syndrome.

The National Association for Down Syndrome (NADS) is one of our local groups and is actually the group started back in 1961 when a group of parents in the Chicago area decided to raise their babies at home rather than sending them into institutions.  Among a lot of other programming, they send groups of parents and advocates into area hospitals to meet with medical professionals and help them learn about our lives.  They encourage physicians to ask questions and open the line of communication so that others can move past their initial fears. 

On a national scale (and even international), the Down Syndrome Diagnosis Network is also working hard to provide current, relevant information to medical professionals so that they can work with families.  They offer a variety of print materials for doctors and nurses to read for heir own knowledge, as well as items to share with families.

Both of these organizations are well worth your time to check out.  We are so thankful that we and others can access this information!!!

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Down syndrome doesn’t suck.

I don’t prefer to give most people who berate and belittle people with Down syndrome any consideration.  But I just need you to understand something very important today.

Down syndrome doesn’t suck.

I’ve watched a lot of really, really crappy things happen to great people recently.  Pain beyond my ability to comprehend surges through the hearts of new parents kissing their babies goodbye too soon.  Families devastated by poverty, war, hate.  There are absolutely horrific events happening all over my community… all over the world.

And apparently, the birth of my baby girl is one of them. 

Recently, Richard Dawkins, a famous geneticist and author (among other things… a**hole being one of them) told a mother expecting a baby with Down syndrome that it would be immoral to continue with her pregnancy, given that she knew about the condition.  He said that people should try to “reduce suffering” when they can and that bringing a child like Tessa into the world isn’t right because she will suffer and won’t contribute to society.

But, Mr. Dawkins, what you have failed to realize, is that  in her eight months of life, she has already contributed to society.  Probably in a better way than you ever could. 

Tessa’s smiles light up the faces of family and friends who have long been searching for something to smile about.  Some of her loved ones glow in a way they never have before when they see her.  The very feat of her existence, beating obstacle after obstacle, has inspired people to do more, try harder, go farther.  She has changed the way teachers do their jobs, influencing the education and experiences of an incomprehensible number of children.  She has helped people forge relationships that haven’t been strong before.  She has been in the world for 247 days and she has made an impact.

Tell me that our world doesn’t need more positivity?  More love?

I know a lot of people with 46 chromosomes who suffer or who don’t contribute to society.  In fact, they sometimes make our world worse.  You made it worse.  You perpetuated an outdated, unjust stereotype.  You devalued the worth of my child.  You scared a mom who doesn’t need to be scared.

People who receive a prenatal diagnosis of Down syndrome deserve accurate information about their child’s future.  If you can’t give accurate information, please don’t give any.  Next time, send them to the Down Syndrome Diagnosis Network.

Rant over.  Special Needs Mom Law #3:  Let it go. 

Done.

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She is so loved. 

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