Tuesday, June 12, 2007


Well, the organization we are starting is beginning to come together, thanks to many people who have been generously giving their time. We have a name (the Centre County Down Syndrome Society), a P.O. box, and the beginnings of a website. I wrote a welcome message for the website for parents who have received a post-natal (after delivery) diagnosis of down syndrome, as we had. I'm posting the current version below; comments are welcome...

First of all, please allow us to say what many people may have forgotten to mention since you learned of your child’s Down Syndrome: Congratulations on the birth of your beautiful baby! Most of us learned about our child’s diagnosis a few hours or even days after birth from a nervous genetic counselor or physician with good intentions but only a few sheets of information printed off the internet. So congratulations again! There are some fabulous resources out there, but Googling them all may not be what you need right now. Please know that we here at CCDSS are all available to you whenever you feel you are ready to talk to someone, and hopefully we have compiled some good information for you to look over before you may be ready to meet us.

The most important advice for the first few days is this: you are allowed to grieve for your lost expectations, and you may go through all of the normal stages of loss: denial, bargaining, anger, despair, and acceptance. This does not mean that you love your child any less; you are simply now faced with a different path, an unexpected path. But be assured, it is an exciting, challenging, and beautiful path.

Raising a baby with Down Syndrome is more like raising any other child than it is different. Of course there are medical issues to keep an eye on, but basically children need love, sustenance, and clean diapers. There may be more trips to the doctor to keep an eye on things, but as that goes, know one thing: a positive diagnosis of DS in Pennsylvania means your child should be eligible for programs that will take care of many bills not even covered by private insurance. Sign up if these programs exist in your area. We would be happy to lead you in the right direction to find them.

Much of the current stock of literature on DS is a bit outdated. Even in the past fifteen years, advances in medical care have made the future for kids much brighter. There are people with DS getting married, holding real jobs, and going to college. We honestly feel that as long as we don’t hold our children back, they will be whatever they want to be. Ask lots of questions of your doctors. If you are not satisfied with their answers, keep asking or get a second opinion. Be open to finding a new pediatrician if need be.

You are not alone. There are many of us right in this area that have been exactly where you are. If you are not located in our immediate area, we are available by phone or email to talk to you at any time. There are thousands more who have been through this all over the world. The new resource of the ‘blogosphere,’ a huge network of web journals, may be one way for you to get information. There are a large number of ‘blogs’ on the internet written by parents of children with Down Syndrome, as well as message boards that are frequented by parents as well. Browsing through blogs can be very reassuring, as you can see how kids of all ages are doing, learn of the struggles and triumphs of families all over the world, and meet blogger friends that you never knew existed.

We know from experience that this time in your life is an absolute whirlwind. The dust will settle, and once you have a chance to shake it off you will see a beautiful child in front of you waiting for your love. We cannot predict where your path will lead, but we would love to help smooth the way for you.


Grandma Marian said...

Wow! I'm so glad you're starting this group "officially," my son and daughter-in-law! I've seen what good effect your informal group of parents and children has had. Bravo to you for reaching out to EVERY one out there! My gorgeous granddaughter Lili has a whole new way to make people happy, as she's already made me so incredibly happy.
Yay, Lili! Yay, Lili's parents!

be well, all - Love, Grandma Marian, visiting Great-uncle Bob right now out West

Alice said...

HAPPY BIRTHDAY, Lili. I hope your day is full of fun. Love, Alice

Jeff said...

Way to go on starting your group. The most important part of this journey is on the local level....I hope your local group then will get involved on the state and national level.

Keep up the great work.