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New Diagnosis--What to Say to Parents

Posted Jun 05 2009 5:07pm
When Bridget was a baby, someone actually asked me if I took my prenatal vitamins when I was pregnant with her (suggesting that Down syndrome was somehow related to vitamin intake, or worse, and how it came off to me--that her having Down syndrome was somehow my fault).

We all have long lists of WHAT NOT TO SAY to an expectant parent or new parent of a child with Down syndrome.

Cheryl at Ruby's Life recently asked for input on what to say when a parent receives a diagnosis of Down syndrome. What would we have wanted to hear?

As it is with all people, there is a large variation in people with Down syndrome in terms of health, ability, personality, etc.

All people (those with and without a specific diagnosis) experience some degree of challenge, and it is not possible to determine in advance how significant those challenges will be in a person's life. There is no telling what an individual will accomplish in his or her lifetime--especially if that person is loved and valued and given every opportunity to succeed.

Yet, many times a parent is given a dim view of the life ahead for their child when a diagnosis is first discovered. Many medical professionals seem clinical and removed when discussing a child's diagnosis, though some are very sensitive and seem to understand the weight of the information.

I've been thinking about what medical professionals and and others say and how it impacts us (parents). Lila's mom posted this recently:

I remember asking the geneticist when we would know how much our baby would be able to accomplish in her life- she just smiled and said "At the end of her life, you'll know. Give her every opportunity to accomplish as much as she can and you'll be amazed at what she can do."

This is honest, and doesn't promise anything in particular. It is such a hopeful, positive statement--one that I think any expectant parent would want to hear.

Does anyone else have thoughts on this subject?
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