Welcome to Down Syndrome Nation! There are so many websites, Facebook pages and Twitter accounts dedicated to supporting families and friends connected to Down Syndrome that we thought we would aggregate some of the most useful resources in one place.
Explore our Blog, and check the MegaLink page for our cornucopia of organizations and information. However your life may be connected to Down Syndrome, we hope you will find something helpful here.
We had no idea that our miracle girl, Juliette would come to us with Down syndrome until the day she was born. Naturally, we thought she was perfect. The concerned look on the faces of the professionals and how quickly they took her from us for genetic testing were our first signs that we might have been given the gift of an exceptional spirit.
When someone tells you, “Your baby has Down Syndrome,” you go through the Elisabeth Kübler-Ross grief continuum. There are so many stories about the challenges that these extraordinary children can have, both physical and cognitive, that feeling terrified for your baby is a completely natural thing.
We are blessed to be living in Jacksonville, Florida, where there are many resources for Juliette, including the Down Syndrome Association of Jacksonville. We were soon surrounded by love and support and began to learn about the many resources available to our beautiful daughter. Jules, so far, doesn’t have the worst case physical challenge scenario. Today, she’s a healthy two and a half year old, participating in a main-stream pre-school. Early intervention with physical, occupational and speech therapy has helped her gain her strength. And her personality melts the hearts of everyone she meets.
The two pieces of advice that have been most valuable to us are:
- Have the same expectations for your child that you do for their siblings.
- Understand that they will take “The Scenic Route” to get there
In her own way, Juliette is just as alert, aware, engaged and yes, just as smart as her peers. She responds, as would any child her age to school and therapy. Some days she’s all in. Some days she would rather chase butterflies. She can hold her own with her older brother where wrestling and playtime are concerned. We’ve adjusted our timelines, learned much about patience and perseverance, but have not lowered our expectations in any way.
Like every baby born, yours will be unique. Your angel will be gifted with a toolbox of ability and your job will be to augment and strengthen it as they navigate life, just as you would for the other children that are part of your family and friends.
Down Syndrome Nation exists so you don’t have to do it alone. We hope to share experience, expertise and resources to help you enjoy “The Scenic Route”, and make the progression of life for your child an adventure for everyone involved.
There is actually no better time than right now to welcome a person with Down Syndrome into the world. As Down Syndrome Nation grows in quantity and quality, we can continue to push the existing edges of the envelope to ensure the best possible life for all children, regardless of how others may define their “ability”.
We are always updating the site, so if you have any feedback or suggestions on how we can make it better. Write to me! We’re all in this together!
Curator – DownSyndromeNation.com
Stephanie (at) DownSyndromeNation.com