Tuesday, April 21, 2009

New Diagnosis--What to Say to Parents

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?


  1. This is Joyce. I LOVE that last statement. I hope that we are not nearing the end of Sarah's life, however we do have 19+ years behind us now, so periodically we do look back. I often think of certain comments that people made and how at the time I thought they were hurtful and rude, yet I can now see how they helped me toughen up a bit and be better prepared for what was to come. So I hesitate in saying that we should only paint a rosy picture, because there will be ups and downs. But I do think we need to get away from allowing parents to think that it is doom and gloom. I think that statement is awesome, it gives hope yet no promises.

  2. I agree!. After hearing "Congratulations", I feel any parent would wish to hear such a beautiful and encouraging statement :)

  3. When Aidan was born we had to console people around us (from our parent's generation especially) and convince them that we were okay.

    Several people said to us, "God sends these little ones to very special families." I never really looked at it that way. If anything, I felt that Aidan would help to make us better people (more compassionate, more tolerant, more appreciative...) Two and a half years later, and I think he has made us better. I wouldn't change this journey for anything.

    I don't know if this answers your question...?

    By the way - I liked what Lila's mom said too.

  4. I love the full potential statement along with the Congrats! It is every human being's right to achieve their fullest potential and accept and admire whatever that might be!

  5. I think "what a beautiful baby" covers it pretty well. Also loved that saying.I agree that our children bring us so many special things and open up so many things for me.