If you are a parent of a child with a disability, you know that getting that diagnosis can be devastating. You ask yourself what does it all mean? How can you properly care for your child and be the support they need? It’s scary and stressful, but you’re not alone. I’ve been there. And I’ve built my life around helping others in similar situations.
That’s me! As a mother of a child with Down syndrome who had to fight the system to get my son legal in the US after his unexpected birth in Canada, and then raising a half a billion dollars for disability charities, I understand my role as a unique resource for parents of children with disabilities. I’m dedicated and passionate. I’m a disability speaker whose mission is to raise awareness of the challenges that children with disabilities and the families who love them face. I am here for you in many ways, whether it be a simple support system to those who read this blog and follow my journey or to meet you through my motivational speaking and humanitarian efforts. Until then, here are some great resources for those lost in Disabilityland.
Global Down syndrome Foundation
This website is a great resource for families of children with Down syndrome. It is an all-in-one stopping point for parents and their children ranging in age from infants to adulthood. Through this website, you’ll get easily accessible and easily understandable information about everything related to Down syndrome, including its cause, physical manifestations, and learning challenges that it creates.
WebMD is a household name, and for good reason. It is an easily understandable web-based resource for a variety of medical conditions. There are literally thousands of medical conditions that you can look up on WebMD, and you don’t need a medical degree to interpret the information that you see. WebMD provides a good overview of the cause and effects of Down syndrome, and it is a valuable resource for parents about raising their special needs child.
Down Syndrome Research and Treatment Foundation
Foundations are also excellent disability resources. The Down Syndrome Research and Treatment Foundation, for instance, is a privately funded organization that is committed to developing a greater understanding of Down syndrome as well as finding more effective treatments. This foundation’s website has up-to-the-minute information about Down syndrome research and results from clinical trials.
National Down Syndrome Society (NDSS)
NDSS is a non-profit organization that acts as both a center of information and a disability advocate. This organization seeks to raise awareness of Down syndrome. It also advocates for the acceptance and understanding of these unique individuals. The organization operates nationwide, and it has local support groups across the country. NDSS welcomes calls and emails from people looking for more information on Down syndrome.
If you’re a parent or caregiver of an individual with Down syndrome, it can be hard to know where to turn for help. But luckily, there are many great resources available to provide support, including educational resources and current news about medical breakthroughs. Whether you’re looking for disability advocates and speakers like me or a compilation of disability resources, I am here to help every step of the way.
Linda Smith is a fearless and tenacious fundraiser, author and motivational speaker. She is a survivor of child abuse, a philanthropist who has raised over one billion dollars for charity, and a disability advocate inspired by her son, Christopher, who was born with Down syndrome. Her incredible journey and brave heart will be detailed in her upcoming book, Unwanted.
Contact [email protected] to connect with Linda for information regarding speaking opportunities, disability resources and fundraising efforts.