Down Syndrome Resources For New and Expecting Parents

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[This is part six of our "New Parent Guide To Down Syndrome" series. Be sure to check out the other posts!]

down syndrome resources tools new parent

Parenting isn't that hard if you have the right tools!

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

stop light top down syndrome resource tool

Finding a local support group should be one of your first priorities!

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

down syndrome families support group  new friends

You may meet some new life long 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!

searching for down syndrome support group

Google makes finding your local support quick and easy!

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

down syndrome family valuable

We love our son!

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.

  1. Babies with Down Syndrome: A New Parents’ Guide, J. Skallerup
  2. A Parent’s Guide to Down Syndrome: Toward a Brighter Future Siegfried M. Pueschel

4.  Down Syndrome Medical Resources

EKG down syndrome

Noah actually thought it was pretty fun to have all these stickers attached to him

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.

down syndrome working hard at physical therapy

Who knew therapy meant I get play all the time?

  1. Speech Therapy:Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals, Libby Kumin
  2. 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
  3. Physical Therapy: Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals, Patricia C Winders
  4. 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:

  1. Common Threads: Celebrating Life With Down syndrome, Cynthia S. Kidder and Brian Skotko
  2. Life As We Know It: A Father, a Family and an Exceptional Child, Michael Berube
  3. Count Us In: Growing Up With Down Syndrome, Jason Kingsley and Mitchell Levitz
  4. Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lift, Kathryn Soper
down syndrome family getting started

Our journey is just starting

If you found this information useful please take a second to click the “like” button to the left of this page, sign up to receive our posts by email, and visit our Facebook page where over 14 thousand families are waiting to meet you.
Thanks for checking out our site, we look forward to being a source of encouragement for you on this new journey.
Did you find this list helpful? Did we leave anything out? Please take a minute to leave a comment below with any other resources that have been helpful for you. Your feedback will help us make this one of the best Down syndrome resource list available! Thank you.

[This post is a part of the "New Parent Guide To Down Syndrome" blog series. Be sure to check out the other posts!]

Yes, even a blog has to have fine print these days.  Here is ours: disclaimer: This post was written by my amazing wife, and the mother of a child diagnosed with Down Syndrome!  She is also a pediatrician, but not your pediatrician!  All of the information on this website (although great!) is for informational purposes only.  Nothing on this site is intended to create a physician-patient relationship, replace the services of a licensed, trained physician, or to be a substitute for medical advice of a physician or trained health professional licensed in your state/Country.  You should not rely on any of the information contained on this website, and should contact a physician licensed in your state/Country on all matters relating to your (or someone else’s) health.  You agree that you shall not make any health or medical related decisions based in whole or in part of anything contained on this website.
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Comments

  1. claire williams says:

    Fab post – loving the part where you advize to only read medical info that is relevant to your child – too many books/doctors go on and on about serious medical problems that can worry people when really there is no need – as you say not every person who has Down Syndrome will have all the same medical problems – don’t cross bridges till you come to them! x

    • I agree. My wife did a great job with this one! This blog post is jammed packed with helpful resources.

      Also I was just talking to my wife about “milestone charts” the other day. I was saying I didn’t care at all about them. And I really don’t. Each and every child is unique and different. I’d rather just love on them and enjoy them instead of thinking about some chart that someone made up! :)

      By the way…do you have a Gravatar?? —-> http://en.gravatar.com/

  2. I must say that I enjoy your posts. The information is excellent and the photos are just beautiful.

  3. Thank you so very much for this post. It is one of the most important posts yet and I can’t believe I had not read it yet. First, I just finished reading ROADMAP TO HOLLAND. I loved it. Yes, I cried, but it was worth reading. As you already know I do a ton of reading (and facebooking) when breastfeeding. I appreciate you sharing the resources and I can’t wait to connect all the web links you have provided.

    On another note, I am continuously looking for resources and your stuff is GREAT. I especially like the milestone link. THanks so much for posting it.

    WEll, I have to get some sleep soon before Enzo wakes up. Thanks again for everything. I thank God every day for having your blog in my life! God Bless You!!!

    • Thanks so much Vanessa. If I had a dollar for everyone time some suggested (or sent me the poem) Roadmap to Holland I could you and me both new every things…. :)

      I’m glad you enjoyed the book. I’m thankful that you find the info on our site useful. That’s one of the reasons we really wanted to start this site, to help people get ACCURATE and POSITIVE information.

      Not just through the writings, but by the videos as well. We wanted the world to see that families raising a child born with Down syndrome are much more “normal” then un-normal.

      I’d encourage you to find a few good sources of information and stick with them (until they give you a reason not to.) You may have already found the amount of information “out there” is overwhelming. It can drive a person crazy trying to assimilate, and sort through all of that information. You have to find out if the information is dated, if the author is credible, etc…..so be careful. And don’t get overwhelmed. :)

      We’re thankful to be on this joinery with you! So don’t worry, you aren’t alone in this. :)

      Give Enzo a big hug from us..!

  4. A Minor Adjustment by Andrew Merriman was a real turning point read for me x

    • I haven’t seen that one..I’ll have to check it out! Thanks for sharing it. Have you checked out any of the others on this list?

      • I don’t realy know why someone would abort a child with an extra chromosome. I would assume that fear of the unknown or fear of difficulties would be an issue. It should help to know that the reality of raising a child with Down syndrome might be quite different than the fears many of us would have.

  5. I just wanted to say that the book listed above by Patricia Winders is excellent. I’m a pediatric PT and I use it all the time as a resource for parents to use as they implement their children’s home programs. It’s written in plain English instead of PT jargon, it has great photos so that parents can have a visual aid, and it has really nice lists of how to progress children’s motor skills. It’s also great to use for kids with hypotonia or general weakness, since many of the principles are the same.

    Here’s another great free resource: http://occhildrenandfamilies.org/KidBuilders.aspx

  6. This guide is FANTASTIC! It’s information overload at the beginning and totally overwhelming. I wrote about those first few weeks here: http://soheresus.com/2011/09/12/the-big-p/

    I love what you are doing, keep up the good work. I will definitely bookmark this site for others to visit.

    • Thanks so much. I’m glad you enjoyed. Thanks for sharing your site! Look forward to getting to learn more about your story.

      • I have a child with Down synrdome and since I was familiar with this, there was no way I would have terminated my pregnancy.She is a wonderful child and is always smiling!It is sad to hear the % of people that do! My spouse and I are discussing ways to increase awareness concerning this. It the unknown and the search for perfection that surely makes people to abort.There is so much help out there and the children are accepted in day cares and schools…it is not like it was, years ago.I do not understand the medical groups that want to have these test done automatically and if so, it is important to inform the future parents correctly.Because ignorance doesn’t make us take smart choices!!

  7. I just wanted to add that one of the best books we read before Blake was born is a book called, “Another Season” by Gene Stallings (former coach for A&M, Cowboys and Univ. of Alabama). This would be especially helpful and easy to relate to for a father-to-be. Though, I enjoyed it thoroughly. Lovely story. Also, a very tiny book called “I Can, Can You?” gave me tons of hope for what my sweet baby boy would be able to do one day. Simple things such as eating spaghetti or sliding down a slide. It’s a pictoral board book, and it’s just a fabulously hope-filled resource for any new parent. :) Amazon has both. Blessings!

  8. Patricia Pender says:

    In the close to 10 years since I had to start to look for resources for the DS son I knew I would be having, I can say that what is out there now has improved exponentially.  Yes, one shouldn’t get too caught up in medical worries.  In retrospect, there are a few things that I would have done differently: #1- I would have had Jim’s VSD repaired between ages 1-2, instead of when he was close to 4…I would still have been upset but I think it would have been easier on Jim.  #2-I should have gotten his orthotic ankle high foot braces when he was first learning to stand up…I didn’t understand that Jim would have benefited from the added support he would sense that could have helped him walk sooner. 
    #3-I let him get addicted to Elmo’s World and allowed him to mess with the DVD/VCR player…probably giving him an idea that he could somehow get into that world and had a more confused view of life as a result.  #4-  I wish I could have sought out more people for him to interact with, that would have helped me push him more and be less enabling…since I had a way of just anticipating his needs and our life was usually too quiet and isolated for Jim’s own good.  He would have transitioned to Pre-School easier.  I notice that DS kids with sibs handle life better but I didn’t have that kind of access.  So, to all of you DS families with more than one kid, please make an effort to connect with those who only have one child.  I commend anyone who already is doing so.

  9. My favorite resource was a DVD called Down Syndrome the First 18 months. The first book I read was Babies with Down Syndrome which I found horribly depressing and impersonal. The DVD was great bc it was full of information as well as interviews with families who had been there. Also the love the families had for the children was beautiful to see as the Babies with Down Syndrome book read more like an appliance manual and kept reminding me (as if I didn’t know)  that my baby was a baby and needed love. I didn’t need a book to tell me I needed to love my baby I needed a book to tell me that this baby I loved with every fiber of my being was going to be ok and give me the information I needed to know to get through the scary medical side of things.

  10. Noah is such an adorable blessing and you and your wife are wonderful parents. Thank your for sharing your precious gift with everyone. 

  11. This is GREAT!!!!  You’ve got the major ones covered.  There’s a site from UK that I find quite useful especially when the little one goes in to the school system.  Please check it out! http://www.downs-syndrome.org.uk/

    • Thanks for the link. I was mainly covering resources in the United States, but you’re right, the web is world wide. I need to include some more international resources. Maybe I could do a different post with links to resources in other countries. Do you live in the UK?

  12. I would add that http://www.downsyndromepregnancy.org is critical for ANY parent, not just those with a prenatal diagnosis.  The friends and family booklet is especially important.

  13. what an awesome resource!!! I just love your blog and what you’ve done with your personal experience and knowledge!!! as a mom of a newborn (in Oct ’11) who was diagnosed at birth….Your blog was invaluable!!! I thank you from the bottom of my heart!!!! Yay for Noah!!!! He is a little miracle and you guys are the perfect parents for such a miracle!!!!

  14. pirjo lyytinen says:

    Hi, Noah´s mom and dad. Your son is so charming. my own is four years old and he really is the sunshine of my days and full moon of my nights.

  15. Catherine Sims says:

    Kind of surprised Victor Bishops web page Riverbend site is not one of your top 6 for new and expecting parents. True there is a huge amount of information on there but when Sam was born I was so hungry for any information I spents hours searching. Victors site was an amazing one stop shop. Victor is a pretty amazing lovely caring guy too. Emmanuel
    His son can speak a few languages including Latin and is pretty accomplished on the violin too. Great family great web page. Check it out sometime

    • We are not aware of him but will check it out. We don’t have any links to personal websites but we should probably consider that. There are several excellent ones and I think parents eventually find the ones they can relate to or learn from and everyone is different. Thanks for the info.

  16. Thank you for such a clear and informative post. Our niece and nephew just gave birth to a little girl with DS and we wanted to know as much as we could so we could be supportive. I felt it best to try and put myself in the parents “shoes” and your posting has helped me tremendously. I hope to keep in touch. Thank you.

  17. Do you know about Opportunity Village in Nevada? It is a wonderous place to be disabled mentally; cognitively; pretty much anything to do with the brain…one of the people who is or used to be on staff there is Linda Smith who is also the mother of a Down Syndrome son. pls excuse any ignorance of this message it is not with ill will

  18. I love all the helpful advice you give to so many families. This is a great post to new families trying to navigate the road with their child.
    As a child life specialist, we work with children and families in the hospital and outpatient clinics, providing emotional and psychosocial support. We prepare patients for procedures, offer coping and distraction strategies and provide a sense of normalcy through creative arts and play. Has a child life specialist worked with Noah during any hospitalizations or clinic appointments?
    Many families don’t’ know to ask for one if they end up in the ED, are admitted or have a surgery scheduled. We can really help ease anxiety for everyone involved.
    I recently published a children’s book about going to the doctor to help explain what will occur through photographs and simple language. It has tips for parents to hold their child in a comfort position during blood tests, vaccinations or during the exam. It is a great resource for all children and may be a great one for your followers as well. Autism Speaks has just put in their resource library as well.
    Here is the direct link to Amazon
    http://www.amazon.com/Its-Time-For-Your-Checkup/dp/1490406050/ref=sr_1_1?ie=UTF8&qid=1389925888&sr=8-1&keywords=shani+thornton
    Keep up these amazing posts!! I love reading and sharing them.
    Shani Thornton
    Childlifemommy.com

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