As a new parent to a child born with Down syndrome it’s easy to feel overwhelmed trying to find the best Down syndrome resources and information. You may have questions like: What is Down Syndrome? What are some of the best books on Down syndrome? What’s it like raising a child with Down syndrome? How to I find the best physical therapist for my child with Down syndrome?
There is an abundance of websites and blogs about Down syndrome available at your fingertips, day and night, but where do you start? How do you prioritize this massive amount of resources you find online? How do separate the accurate information from the inaccurate information?
First, take a deep breath. Second, bookmark this post. You’ll find it to be a great starting point as you explore the various Down syndrome resources we’ve listed for anyone wanting to learn more.
Take your time and look through the suggested resources mentioned in this post; there’s a lot of information here so feel free to digest it at your leisure.
Top 6 Down Syndrome Resources For New and Expecting Parents
1. Local Down Syndrome Support Groups
If you only do one thing on this list of resources, find your local Down syndrome support group first!
I feel that finding other families going through the same thing is one of the most encouraging things you can do. You’re not alone, and these groups can get you in contact with other moms and families who know what it’s like to be a parent of a child with Down syndrome. They can also help guide you in the right direction, and give you parenting tips, since they are speaking from experience.
This is not their first rodeo, but it’s likely yours, so learn from the local experts.
Why local support groups are the best resource for new parents
I honestly think Local support groups are the best resource for new and expecting families of children born with Down syndrome. The internet is a scary place when you are expecting a baby, especially one that comes with a bonus 21st chromosome. There are more messages boards, Facebook pages, and online support groups than you could every read in a life time. And although each of those online resources have their place, there’s nothing like getting to meet other families face to face (it’s also hard to hug someone online.)
Our local Down syndrome support group (Down syndrome guild of Dallas) offers various programs and educational seminars including a Mommy and Me class which is the best thing I ever did to deal with my emotions. These women knew EXACTLY how I felt and provided a safe place for us to talk.
Local support groups can help you meet new friends
It is nice to find a mom who has a child just a little bit ahead of your baby so they can share their experiences. When Noah was born, our friends at The Fun House reached out to us. They had a then 2 1/2 year old who was running around, playing basketball, and a dancing machine. We have a bond now with this family that is beyond explanation.
Their encouragement and guidance in the beginning was like rays of sunshine that helped changed our mix of emotions into celebration and excitement.
We hope that our son Noah, and our daily videos is an encouragement to you…but we also hope you find a family you can hug in person.
One quick way to find your local Down syndrome support group
There are several ways to find your local Down syndrome support group, but this one is perhaps the easiest. Simply go to google, type in your city, followed by the word “Down syndrome.” As you can see in the picture below, before we even finished typing the word “Down syndrome” our local support group popped up! Done, and done!
2. National Down Syndrome Organizations
There are two national organizations that are great Down syndrome resources and can be a tremendous source of information for you and your family. Take a second to browse the recourses and information on their website, and feel free to even give them a call if you want.
1. National Down Syndrome Congress: 1.800.232.ndsc (6372)
- The mission of the NDSC is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome
- You can find lots of great information on their new parent page.
2. National Down Syndrome Society: 1.800.221.4602
- The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome
3. Down Syndrome New Parent Books / Guides
It is probably wise to get a book or two to thumb through. There are countless books about Down syndrome, but we listed two that are give great overviews of almost every topic you need to know about concerning Down syndrome. They may not be as comprehensive as some of the other books about Down syndrome out there, but you’ll find them to be a great starting point.
- Babies with Down Syndrome: A New Parents’ Guide, J. Skallerup
- A Parent’s Guide to Down Syndrome: Toward a Brighter Future Siegfried M. Pueschel
4. Down Syndrome Medical Resources
The medical side can be a little overwhelming. It can also not apply to your child, so please try not to get to stressed out over all the medical jargon likely being thrown around. There are a variety of medical conditions that occur in Down syndrome, but your child is not guaranteed to have these conditions. I recommend reading only what is applicable to your child as the other stuff will bring unnecessary worry. However, there are blood tests and specialists that your child will need to see despite how well they are doing.
Being proactive in your child’s health will make their life that much better. Instead of spending time reading various forums that are likely filled with inaccurate medical information, let me suggest three great online resources with medically accurate information about Down syndrome that you can trust.
1. American Academy of Pediatrics’ Health Supervision of Children with Down Syndrome (2011, 2001) This is what your pediatrician should be using to care for your child. It has the schedule for tests, specialists, etc. The 2011 is obviously new and your pediatrician may not know about this yet and is using the 2001 version. If you are not having these things done at the time recommended, print this out and bring it to your doctor. Your doctor can always learn something new 🙂
2. Children’s Hospital of Boston’s Down Syndrome Page: CHOB is the hospital where Dr. Brian Skotko trains and works. They have put together a great resource for your doctor as well as you. Fun Fact: Dr. Skotko also wears awesome pants. 🙂
3. Down Syndrome Health Issues: Another pediatrician helping us understand health issues found in children with Down syndrome.
5. Down Syndrome Developmental Books And Resources
We have listed several books that are great resources to help you figure out what your therapists should be working on in order to help your child with Down syndrome reach their developmental milestones.
If you don’t have the greatest resources in your area, it provides a complete therapy plan that you can do yourself. They are each laid out a little differently, but help you attack development in an organized fashion. I can’t recommend these books enough!
By the way, we have an entire category of posts dedicated to therapy on our site. Be sure to take some time to make your way through those as well. I’m sure you’ll find lots of helpful ideas you can use right away.
- Speech Therapy:Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals, Libby Kumin
- Occupational Therapy: Fine Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals, Maryanne Bruni. This one has a GREAT toy guide for each stage
- Physical Therapy: Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals, Patricia C Winders
- Down Syndrome Education Online: My absolute favorite website about development and helping our children learn. They have the most detailed milestone list I have found. They also have a free reading program developed for children with Down syndrome (how cool is that?)
6. Personal Stories By Families Raising Children with Down Syndrome
People will tell you to read personal stories or biographies. I want to warn you about this in the beginning. Every child is different, and the children written about in these books (and the one this website is about) are not your children. Your child will have different gifts, talents, abilities, and will climb the developmental ladder differently than any other child.
Every child is unique (regardless if they do or don’t have a disability.) Don’t ever forget that. Please resist the temptation to play the comparison game that so many parents play. If you commit to starting off on the right foot now, and not comparing your child’s development and ability to anyone else’s you’ll thank me later.
Remember, despite how well the children are doing in these personal stories, it will not be what you had envisioned for your own child. You will celebrate these stories and be encouraged by them eventually but it may be overwhelming at first and maybe even a bit discouraging. But when you are ready, the following books are good resources:
- Common Threads: Celebrating Life With Down syndrome, Cynthia S. Kidder and Brian Skotko
- Life As We Know It: A Father, a Family and an Exceptional Child, Michael Berube
- Count Us In: Growing Up With Down Syndrome, Jason Kingsley and Mitchell Levitz
- Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lift, Kathryn Soper