Since this is Sean’s birth week, I wanted to share what happened after we found out he had Down syndrome.  
     Rick had to call the person doing our birth announcements with Sean’s stats: “9 pounds 3 ounces, 21.5 inches long, etc.” My thoughts were that our friends and relatives really needed more information about our son than his vital statistics.
     After telling four friends of his diagnosis over the phone and in person I really didn’t like their reactions. They were getting upset and apologizing. Their “I’m sorry’s were compelling me to comfort them and tell them “It’s O.K.” and I didn’t have the emotional energy at the time to continue to deal with their sadness, when I had a new baby that I loved anyway, no matter what he had and I was worried about because he was in intensive care at the time.
     Then I thought, “well if this had happened to one of my friends what would I have said?” I couldn’t retrieve from my memory files anyplace I had heard the proper response, or even the improper response. So I decided to add a note to my son’s birth announcement telling people how we wanted them to respond. It read:

Dear Family and Friends,

Sean is a very special baby, and the birth announcement can’t possibly say it all. God has made Sean special and chosen us to be his parents…we feel blessed. Sean was born with Down Syndrome. We want to give you time to adjust to the news, so you wouldn’t feel the need to have an immediate response. We hope you will feel the same as we do, we’re happy and proud. We would like you to see him as we do, a beautiful baby boy. We also want you to treat him just like any other baby—Congratulate US. We have a baby, we’re a family now. This is not a sad moment, PLEASE do not apologize, we aren’t sorry. We are still gathering information on Down Syndrome and probably won’t be able to answer any questions for a while. We would like to encourage you to call us, come to see Sean. He sleeps, eats, cries and dirties diapers, just like every other baby, he’s just got an extra chromosome.

As time went on people said all kinds of stupid things to us.  And they still do.  In the beginning I was astounded, but today I realize they don’t have anything but good intentions.  When Sean was 4 I wrote a whole presentation on ‘What to Say’ and presented it to a MOPS Group at our church.  It went viral in it’s day, was used as a template for the Down syndrome Association of New Zealand’s pamplhet “I Don’t Know What to Say’ that was included in their new parent packets.  Parents in several states asked and were granted permission to personalize it and give it in their area. It was printed in it’s full form in one book, and in an edited version in “You Will Dream New Dreams.”  I am thrilled that Sean’s birth announcement and the speech touched so many lives.  The full text is linked here if you would like to read the whole thing.

http://www.whostheslowlearner.com/what-to-say/