Down Syndrome Resources for Modern Moms

Today I asked a friend of mine, Stephanie, to share an array of resources for mothers with Down syndrome children or mothers who are pregnant with a Down syndrome baby. Stephanie’s oldest son, Andy, has Down syndrome. Stephanie is quite involved in the Down syndrome community and is a huge advocate in sharing her amazing knowledge and resource with other moms like herself. She recently published a book that is available for free to anyone who wants basic, up-to-date information called, Understanding a Down Syndrome Diagnosis. Pretty much this is what modern moms need to know about Down Syndrome. Thanks, Stephanie for sharing!  

When I was 23-years-old, I had just graduated from college, started my first real job for a software company, and I was pregnant with my first child — a baby boy. When my husband and I first learned that our baby had Down syndrome four hours after he was born, we were overwhelmed, lost, and confused. Would he ever be able to live on his own? Would people be unkind to him? How could we afford this? Would we be able to have any more children? Fundamentally, we desperately wanted to know what life would be like for him … and for us.


Fortunately, the hospital had wonderful support staff that came in the room right away to listen to our concerns without judgment and then helped us pick up the pieces by explaining the actual challenges and strengths of people with Down syndrome and pointing us to the services that would help us and our son.

The compassion and support I received at that time motivated me to create resources to support the other 1/691 women like me, particularly those who find out prenatally, because it’s important that women receive up-to-date, accurate, and balanced information right away during those critical times. That information should be supported by the most current research about what life is like for people with Down syndrome and their families; provide a non-judgmental approach; and point expectant parents toward additional resources.

Top 6 Resources for a Prenatal Down Syndrome Diagnosis

1. “Understanding a Down Syndrome Diagnosis”. This is a short booklet that was reviewed by representatives of the national medical and Down syndrome organizations for women first finding out about a DS diagnosis and who need basic information about Down syndrome and about families who have a child with Down syndrome, the degree of medical complications, resources for parents, and reproductive options. Available in print or as a free digital download.


2. Brighter Tomorrows. Comprehensive website with information for new and expectant parents learning about Down syndrome.

3. Down Syndrome Pregnancy. Blog for women who are pregnant and expecting a baby with Down syndrome. Also includes the books “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” and “You’re Loved One is Having a Baby with DS.”

4. BabyCenter board. Online forum of women who are expecting a baby with Down syndrome.

5. Genetic Counselors or geneticists. You can ask for a referral or go to the National Society of Genetic Counselors or American College of Medical Genetics websites.

6. National or local Down syndrome organizations, such as the National Down Syndrome Society, which includes a list of local organizations.

Down Syndrome Today

Today I’m the mother of a 12-year-old boy with Down syndrome who is an amazing mountain biker and photographer with a photography exhibit traveling throughout medical colleges in Russia. He also wears hearing aides and really struggles with reading and math because of his moderate intellectual disability. Andy also loves to torment and defend his 10 and 5 year old sisters.

Top 5 things you might not know about Down syndrome today…

1. Most people with Down syndrome have a mild to moderate intellectual disability and receive early intervention (from birth to three) and special education services at school to help them achieve their goals. These services can include speech therapy, physical therapy, occupational therapy (fine motor skills), modified curriculums, teaching assistants, small group work, etc., and more often these services are provided in an inclusive setting. There are also approximately 250 college programs for people with intellectual disabilities.

2. The average life expectancy for people with Down syndrome has more than doubled since the 1980′s to about 60 due to improved healthcare.

3. About half of babies with Down syndrome have a congenital heart defect — but most can be corrected in the first two years. In fact, according to Cincinnati Children’s Hospital, the success rate of one of the most common heart defects is nearly 97%. Babies with Down syndrome also have higher chances for hearing or vision problems, respiratory infections, hypothyroidism, and feeding or digestive issues. A typical newborn with Down syndrome usually has one or some of these health challenges, but not all of them, and most are treatable. For example, my son takes thyroid medicine for hypothyroidism and wears hearing aides to school due to mild hearing loss.

4. New research shows that 94% of older siblings feel proud of their brother or sister with Down syndrome, and 88% feel that they are better people because of their siblings with Down syndrome. In addition, nearly 99% of people with Down syndrome said they were happy with their lives and over 96% said they liked who they are and how they look.

5. There is a registry of about 200 families interested in adopting a baby with Down syndrome at the Down Syndrome Adoption Network.

» Tell me… Do you have a child with Down syndrome? If not, do you have a friend or know of someone who has Down syndrome children? 

12 Responses to “Down Syndrome Resources for Modern Moms”

  • Jen

    One of my best friends growing up had a brother with Down Syndrome (and I have a brother with special needs as well). It was so great to have that relationship as a kid because I’ve always felt comfortable around people with special needs. My friend’s brother, Jacob, was the sweetest guy in the world! We ended up going to the same high school and it was so great to be able to see him surrounded by his friends everyday. Thanks so much for sharing this. Andy is sooo handsome!!

    Reply
  • Anna

    We’ve adopted our child with down syndrome. She is the youngest by far, so being raised in a family of adults. They adore their sister and appreciate all she has taught us. I would like to comment about the clothing again, I’ve entered to win the osh kosh gift certificate. We have found that Gymboree clothing is very suitable for our little one, comfy knits and stretchy waists. We also purchase Japanese underwear for her, similar to Hannah Anderson types.
    Thank you for posting about the resources and encouragement for families like us!

    Reply
  • Savannah Allen

    I’m a proud mother of a daughter, who is 3 with Down syndrome and I couldn’t be more thankful to God for how he made her. I just turned 22 when I had her but my age hasn’t stopped me from being the best mom for her. She has 3 other siblings and she just couldn’t b happier! I was disappointed with how the hospital told me but I have an amazing support system with the DS association of stl

    Reply
  • Patricia Ricks

    I have seven children, my two youngest are adopted and have Down syndrome. We are a close, busy family and enjoy all that life has to offer.

    Reply
  • Janice

    I have an 18 year old son with Down Syndrome. He does very well and we are so PROUD of him. He is a wonderful young man. He was precast in the local Children’s Theater in the Jellybean Conspiracy, a play about a girl with a brother with Downs. Our son was the boy with Down’s. He loved it and was in 3 other plays.

    Reply
  • Lisa

    Our youngest of 3 has Down Syndrome. He is only about 3 months old and we feel like we are still figuring everything out. We feel so blessed to have this special little guy part of our family. I really love to hear so many positive things. I just want him to have all the opportunities and advantages possible. It helps to hear from others who have been and are in similar circumstances. Thanks for sharing!

    Reply
  • Sheva

    I have a daughter with Down syndrome who will be theee ina few weeks. She is sweet and kind, she is also strong willed and can melt down into a perfect toddler fit in seconds. She struggles in some areas and excels in others. She has a very small stature and a huge personality……She is just like any other child with strenghs and weaknesses. Sometimes she is easy to parent and sometimes she is hard. I find this to be true for all my children, parenting is hard with or without a diagnosis, and like the rest of my children I wouldn’t change her for the world she is the best thing that could of happened to our little family. http://www.myshtub.blogspot.com

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  • Shannon

    I have an 18 month old daughter with Down syndrome. She is our sunshine. I had a prenatal diagnosis, and was not given any information like this, but was offered termination. Luckily I found the Babycenter board, it was my lifeline. At first her diagnosis was devastating. Now I can’t imagine her any other way. She is true joy. Her brother loves her so much that he wants another baby sister! Thanks for sharing this post!

    Reply
  • Brittany

    Thanks for doing this post! I am 24 and i have a three month old daughter with down sundrome. I had a prenatal diagnosis and found all of the sites mentioned extremely helpful the last few months of my pregnancy. Isabella is absolutey precious and im so thankful for all of those resources that helped me and are still helping me through this journey.

    Reply
  • Brittany

    Thanks for doing this post! I am 24 and i have a three month old daughter with down sundrome and her open heart surgery is scheduled for August 3. I had a prenatal diagnosis and found all of the sites mentioned extremely helpful the last few months of my pregnancy. Isabella is absolutey precious and im so thankful for all of those resources that helped me and are still helping me through this journey.

    Reply
  • Jen

    I am due in just a few short weeks and have received a prenatal diagnosis of Down syndrome for our son. Throughout this pregnancy I have read many blogs and visit the Babycenter groups daily. I found this to be a very positive post and it has left me feeling inspired and excited to meet my little guy. Thank you.

    Reply

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