If you’ve found your way to this page, then you’re either a parent, family member or friend of someone that is pregnant with a child that has been diagnosed with Trisomy 21, or Down syndrome; or, you may have just unexpectedly delivered a child with Down syndrome. In either case, the next several weeks is guaranteed to be a roller coaster ride of monumental proportions, and in many ways, the short term journey for many of you will closely shadow how you may have felt when you lost a loved one. How the journey ends, though, is up to you, but we promise you that it will get better — much better. This page intends to show you what things look like at the end of your ride.
Regardless of your relationship to the pregnancy or the child that has just been born, rest assured that reality is far more promising than your worst fears. This message is especially relevant for grandparents and senior family members, who may have a memory of Down syndrome that is not the reality of 2009.
We encourage you to read through the following diaries, and hope that they can offer some valued perspective. SBDSA also strongly encourages you to reach out to your community and the resources listed on this site.
Light at the End of the Tunnel
This 20 page compendium is a wonderfully written exposé for parents that learn prenatally that they are carrying a child with Down Syndrome. The primary author of this insightful work, Linda Chan Rapp, is a member of the SBDSA community.
The Baby is Born, Now What?
If you’ve just delivered, or you are an eager grandparent, family member or friend, this section is for you.
Although every child comes to us with their own unique needs and gifts, there are certain constants within the Down Syndrome community that every family should be aware of right from the get go.
#1. Have your newborn’s pediatrician write a document that states their name, date of birth and diagnosis. Create a cover letter how best to contact you. This letter is your entry card into your local regional center. Contact your local regional center’s Intake Department and advise them of your forthcoming submittal.
#2. After a brief intake process, the regional center will schedule a one-on-one meeting with your new family at a time and place that is convenient to you. The individual that you meet with will be your Case Worker.
#3. Before your initial meeting with your Case Worker, take some time to familiarize yourself with the services that your newborn is eligible for, including Stimulation Therapy and Physical Therapy. Do not hesitate in the slightest to contact SBDSA and start asking questions, no matter how silly they may seem to you. There is a lot to learn right now, as if you don’t already have your hands full. You can also obtain copies of references that SBDSA has compiled for purchase through Amazon.
Need Additional Information?
If you would like additional information or have a million questions, SBDSA is here to help where we can. You can use the Contact Us link below, and someone will respond to you on a timely basis.