We know that caring for a loved one with Down syndrome can be challenging to navigate, especially when you’re doing it all on your own. To help you better educate yourself, advocate for those with Down syndrome, and find support, we’ve gathered 12 helpful resources for you to use and share with others in the Down syndrome community.
Our resources can be categorized into the following four categories:
Education and Research
If you have an individual with Down syndrome in your life, it’s crucial that you educate yourself in order to best advocate for, support, and love them. Whether you’re learning the medical responsibilities involved with caretaking or trying to understand their learning processes, using any of the following resources for research and education will help you take a step in the right direction.
- KidsHealth.org
- With simple and to-the-point explanations, this website is a great source to introduce Down syndrome to people of any age.
- Down syndrome Education
- This research center explores how children with Down syndrome develop and learn, as well as teaches best practices for their education.
- Down Syndrome Diagnosis Network
- DSDN is an organization for parents/caregivers of individuals with Down syndrome. They work to connect these families and their medical professionals to helpful resources, while also providing support and any other information that might be needed.
Down syndrome Organizations
While Down syndrome is the most common chromosomal disorder, it is the least-funded major genetic condition. However, there are several incredible organizations that are working towards changing that through advocacy and community, such as:
- National Down syndrome Society
- NDSS serves as the leading human rights organization for those with Down syndrome. They support and advocate for this community through their own key areas of resources & support, policy & advocacy, and community engagement.
- The Lucky Few Foundation
- The Lucky Few is a national Down syndrome advocacy organization that’s focused on creating a more inclusive world.
Programs and Services
While many resources for individuals with Down syndrome are focused on children and teens, there are plenty of programs and services that serve these individuals into adulthood. These organizations work to create opportunities for those with Down syndrome, as well as help them reach their full potential in all they do.
- Gigi’s Playhouse
- This online and in-person resource offers free educational information, help with career development, and other beneficial developing programs.
- The Arc
- The Arc is a community-based organization that promotes and protects the human rights of people with intellectual and developmental disabilities. They work to ensure that these individuals have equal access to information and training to support them throughout their lifetimes.
- Ruby’s Rainbow
- This organization grants scholarships to students with Down syndrome that are seeking higher education.
Blogs and Forums
While research organizations and scholarly studies are great references to educate yourself on Down syndrome, sometimes it’s more helpful to turn to someone with similar experiences. Many caretakers, family members, and friends of individuals with Down syndrome have written books, blogs, and host forums that share personal stories and experiences in order to educate and help others in their same situation. A few blogs and forums we suggest checking out include:
- Garden of Eagan
- This blog is written by parents who have six children with Down syndrome and gives a look into the ups and downs of their childhoods.
- Down Wit Dat
- A mom with three children documents her life raising one child with Down syndrome and two without. She writes about caretaking best practices and how she advocates for all of her children.
- Uno Mas! Forum
- This forum has years worth of valuable information about Down syndrome from experienced parents — from behavior to medical concerns.
A Safe and Supportive Community
Looking for a place where your loved one with an intellectual or developmental disability will be encouraged to be creative and express themselves? The Baddour Center is dedicated to providing a model residential community for adults with intellectual disabilities and autism in an environment that promotes maximum growth intellectually, spiritually, physically, socially, emotionally and vocationally. Learn more about The Baddour Center’s Performing and Creative Arts program and contact us today to schedule a tour!
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