RECEIVED A DOWN SYNDROME DIAGNOSIS?
A Note from Ellen Boyer.
Putting my feelings toward the Down syndrome community and what Brett’s extra chromosome means to me is tough. The joy is too big to contain. The way it changed my life in the best ways is indescribable. It was one of my most favorite things about her. But it was just one part of her. The feelings are so dynamic. This topic pulls me in ways that feel like a tug between heaven and earth.
If you are just receiving a Down syndrome diagnosis for your child, please accept my deepest, most joy-filled congratulations! Hear me, feel my heart. You have just hit the lottery. You may not feel that just yet, but the joy coming your way is part of a fraternity that only those initiated can understand. It’s a society you never knew to dream of being a part of.
Once you are part of this family, you are family for life. You may know that already, or you may feel anger, confusion, or fear of the unknown. You may not be ready to celebrate just yet, but believe me when I say, with every fiber of my being, one day you will. It may be while you are still pregnant, or maybe like me, the minute you look into your child’s eyes. It may be a month after birth, or maybe a year. And that’s okay! Those feelings are yours, and they are something almost every parent of a child with Down syndrome goes through.
“I hope you soon feel like I do: more chosen than ever, more trusted than ever, more loved than ever, and capable of more love than you were before. ”
I hope you lean into the beautiful world of cherishing every milestone without getting caught up in whether they are on anyone else’s timeline. I hope you see the incredibly beautiful uniqueness of your child. I pray you see the miracle in them being part of your family. I hope you soon feel like I do: more chosen than ever, more trusted than ever, more loved than ever, and capable of more love than you were before. You will be part of the most welcoming, encouraging community you’ve ever been a part of. Some of the deepest friendships of my life have grown from our shared love for our daughters with something extra. Because we know something most aren’t lucky enough to understand.
Did you know we parents refer to ourselves as the lucky few? The lucky few who know a secret of life. The secret to seeing life through our child, who has taught us far more than we could ever teach them. I hope you will, too. I hope you know we are committed to more inclusion for our kids, more compassion in all of life’s circumstances, and opportunities for lifelong learning for people with Down syndrome. Kind of sounds like your dreams for any child, doesn’t it?
I pray you won’t listen if anyone tries to tell you what your child is capable of. Let your child lead the way, with as many resources as you believe will enrich your family. Every day, I wish I could tell every doctor who “warned” me about things Brett may never do that she has saved lives in the world of CHD and is revolutionizing the care given to all children born with heart disease. I couldn’t be prouder to be her mother if I tried. We the lucky few, indeed.
#THELUCKYFEW
Down Syndrome Resources.
Families are often overwhelmed and in need of reliable information after receiving a Down syndrome diagnosis. There are community resources available across the country as well as online resources and support groups. Upon searching Facebook and Instagram, you may find a group in your area that can provide things such as emotional support, experience, guidance and friendship. We urge you to explore these things as a possible resource for your family when the time is right.
In addition, there are several local and national organizations providing reliable medical information that may be useful for those navigating this topic or for those interested in learning more about Down syndrome. We have linked some trusted websites for these purposes.
Local Resources
Best Buddies in Tennessee offers One-to-One Friendship, Integrated Employment, Leadership Development, Inclusive Living, and Family Support programs for individuals with and without disabilities.
Down Syndrome Association of Middle Tennessee
Celebrating and supporting people with Down syndrome and their families.
High Hopes Development Center was created out of necessity by five families in Middle Tennessee. These community members envisioned a place where children with special needs could receive a jump start in early education with therapeutic interventions on-site for those who needed it.
What they created was an inclusive environment, where children with special needs play, learn, and grow alongside their friends that are typically-developing.
This inclusive education experience is bolstered by an on-site outpatient clinic providing four branches of pediatric therapy.
GiGi’s Playhouse Nashville is proud to become the 16th Playhouse worldwide. GiGi's Playhouse Nashville provides free programs that are educational and therapeutic in nature to individuals with Down syndrome from birth through adulthood, their families and the community.
National Resources
National Down Syndrome Society
Another long standing organization dedicated to improving and celebrating the lives of those with Down Syndrome through work, involvement and advocacy.
Down Syndrome Diagnosis Network
DSDN supports parents who have recently received a diagnosis for their child or unborn baby by connecting them to other families touched by Down syndrome.
You are not alone. Join one of our many private rockin' mom™ and dad online groups for new and expectant parents.
Best Buddies is an international organization dedicated to inclusion for those with intellectual or physical disabilities through peer and school-based friendship programs, leadership development and a jobs program. They are located in many states across the country and are an excellent resource for any age.
With over 61+ brick-and-mortar locations across the United States and Mexico and 200 inquiries to start new locations all over the world, GiGi’s Playhouse is the ONLY network of Down Syndrome Achievement Centers. Every day, we provide FREE, life-changing therapeutic, educational, and career training programs for 30,000+ individuals of all ages.
Ruby’s Rainbow offers scholarships to students with Down syndrome so they can chase their dreams of higher education and independence. Along the way, we take every chance to let the world know what these rockin’ individuals are capable of!
#THELUCKYFEW
Down Syndrome Resources.
Families are often overwhelmed and in need of reliable information after receiving a Down syndrome diagnosis. There are community resources available across the country as well as online resources and support groups. Upon searching Facebook and Instagram, you may find a group in your area that can provide things such as emotional support, experience, guidance and friendship. We urge you to explore these things as a possible resource for your family when the time is right.
In addition, there are several local and national organizations providing reliable medical information that may be useful for those navigating this topic or for those interested in learning more about Down syndrome. We have linked some trusted websites for these purposes.
Local Resources
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Best Buddies Tennessee
Best Buddies in Tennessee offers One-to-One Friendship, Integrated Employment, Leadership Development, Inclusive Living, and Family Support programs for individuals with and without disabilities.
-
![]()
Down Syndrome Association of Middle Tennessee
Celebrating and supporting people with Down Syndrome and their families.
-
![]()
High Hopes Development Center
High Hopes Development Center is an inclusive environment, where children with special needs play, learn, and grow alongside their friends that are typically-developing.
This inclusive education experience is bolstered by an on-site outpatient clinic providing four branches of pediatric therapy.
-
![]()
Gigi’s Playhouse Nashville
GiGi’s Playhouse Nashville is proud to become the 16th Playhouse worldwide. GiGi's Playhouse Nashville provides free programs that are educational and therapeutic in nature to individuals with Down syndrome from birth through adulthood, their families and the community.
National Resources
-
![]()
National Down Syndrome Society
Another long standing organization dedicated to improving and celebrating the lives of those with Down Syndrome through work, involvement and advocacy.
-
![]()
Down Syndrome Diagnosis Network
DSDN supports parents who have recently received a diagnosis for their child or unborn baby by connecting them to other families touched by Down syndrome.
You are not alone. Join one of our many private rockin' mom ™ and dad online groups for new and expectant parents.
-
![]()
Best Buddies International
Best Buddies is an international organization dedicated to inclusion for those with intellectual or physical disabilities through peer and school-based friendship programs, leadership development and a jobs program. They are located in many states across the country and are an excellent resource for any age.
-
![]()
Gigi’s Playhouse
With over 61+ brick-and-mortar locations across the United States and Mexico and 200 inquiries to start new locations all over the world, GiGi’s Playhouse is the ONLY network of Down Syndrome Achievement Centers. Every day, we provide FREE, life-changing therapeutic, educational, and career training programs for 30,000+ individuals of all ages.
-
![]()
Ruby's Rainbow
Ruby’s Rainbow offers scholarships to students with Down syndrome so they can chase their dreams of higher education and independence. Along the way, we take every chance to let the world know what these rockin’ individuals are capable of!
