Down Syndrome resources and networking groups

If you have just received a Down Syndrome diagnosis and you’re wondering what resources to look at and how to get connected with others in the Down Syndrome community, I have been in your shoes and I am here to give you some pointers on what helped me in the beginning stages of my journey.  

After receiving our Down Syndrome diagnosis I felt so lost. I felt like I knew absolutely nothing about Down Syndrome and that scared me. My anxiety level was at an all-time high, I was being thrown all these pamphlets, statistics, and other information from doctors that just seemed to confuse and scare me even more. This is when I began my nosedive into google searches.    

While there is so much good and useful information online, it can be overwhelming to try and read it all at once. I finally decided that I needed to get connected to other parents in the Down Syndrome community for support and personal answers. During my searches for Down Syndrome organizations, I found the Down Syndrome Association of Atlanta, and if you don’t live in Georgia don’t worry, there are Down Syndrome Associations in every state.

On their website they provide information for networking groups that parents can join. This is where I came across an organization called Jack's basket.

The mission of Jack’s basket is to provide families with resources and support within the community. This is where I made my first connections within the Down Syndrome community. I requested my complimentary basket through their website and was connected with another mom in my community whose child has Down Syndrome. She delivered my basket to me and this was the first time I was able to bring myself to talk to someone and ask the tough questions. I never felt right asking doctors specific questions because they just know statistics and what they have been taught in school about Down Syndrome, but being able to talk to a mom who has been raising a child with Down Syndrome made me feel like I was getting better answers. 

While both of the previously mentioned resources were great at helping me get my foot in the door, the best networking group I found is the Down Syndrome Diagnosis Network.

They have hundreds of subgroups that you can join depending on your due date/baby’s birth date, and any medical conditions your baby has. This is a much more personalized networking group because it narrows down the connections to people who have kids around the same age as yours or whose kids are going through the same medical journey as yours. 

The main thing I use these groups for are to ask questions and compare and contrast notes between other parents to see what things are and aren’t working for their kids that are going through the same struggles as my daughter. Most of us in these groups are going through this journey for the first time so we are all just learning as we go. It is very reassuring to know that I have a support group of hundreds of people who are going through the same things as I am. 

While those are the top online resources and networking groups that I have found helpful, I also have a couple of books that have helped me. The first one is a book called Bloom by Kelle Hampton.

It is a personal memoir written about finding out at birth that her daughter has Down Syndrome and talking about her first year of life. It is such a real and raw story that gives you insight to the feelings and emotions that she had while going through this experience, and things she did to work through them. 

Babies with Down syndrome, a new parents guide is another great book that provides a lot of information on resources and a general overview of what to expect at different ages and developmental stages in your child’s life.  

There is no one resource that is going to give you all the answers you are looking for but the more books you read and groups you join the more you will learn. This is journey is a marathon, not a sprint. I just try to take it one day at a time and one doctors appointment at a time. If I start to look too far ahead I get very overwhelmed with all we have to do. 

Just remember, you are your babies biggest advocate and the more resources you find and the more research you do the better equipped you are to know what you need to do for your baby. We are all in this together!