New and Expectant Parents
You have either just given birth to a baby with Down syndrome or found out through pre-natal testing that the baby you’re expecting is going to have Down syndrome.
Congratulations on the birth of your new baby!
You are not alone. The Gold Coast Down Syndrome Organization has been serving families of children with Down syndrome and related disabilities in Palm Beach County, Florida since May 1980. A family support group advocating for improved outcomes for all people with Down syndrome, we are here to help answer the many questions that face you in the wake of this news. If you are searching the internet for more information about Down syndrome, please click these links for the National Down Syndrome Society and the National Down Syndrome Congress.
Have you received a prenatal diagnosis of Down syndrome? You may find the website http://downsyndromepregnancy.org/ helpful.
Having current and accurate information about Down syndrome will help you feel knowledgeable and less anxious, therefore enabling you to make informed decisions about the health and education of your new baby. Besides written information, both factual and anecdotal, it is also very important to connect with other parents whose children have Down syndrome. You have a long road ahead and will surely find that the “emotional” support of other parents will help you cope and develop the advocacy skills you will need as you embark on this new journey. Sometimes it will be exciting and invigorating, other times it may be a challenge. This may not be the future that you expected, but remember that you are not alone. We are here to support you in your new journey. Again, Congratulations on the birth of your beautiful new baby! We hope to meet you soon!
We welcome new and expectant parents to our organization and hope you will contact us to offer you support. We know that often times getting this news can be overwhelming. We have listed some resources here that we hope you will find helpful as you seek out information about Down syndrome. Babies with Down syndrome access early intervention services by contacting Early Steps at 561-881-2822. To reach the intake/referral line directly call 561-882-6426. For more information about Early Steps click here. Para mas informacion en espanol, favor de llamar a Lupe Torres al 561-289-5748 or click en Espanol. Click here for information about Meet Greet Play and Learn
Boston Children’s Hospital Allen C. Crocker Speaker Series.
Gold Coast Down Syndrome Organization has a wonderful lending library filled with information about Down syndrome.
Medical Professionals click here.
Welcome To Holland
by Emily Perl Kingsley
© 1987 by Emily Perl Kingsley. All rights reserved
Posted with permission of the author 4/2009
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. You’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But … if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.