In case you didn’t know, October is Down Syndrome Awareness Month. As a mother to a child with Down Syndrome it’s one of my favorite months as it gives me a good excuse to talk about my child to anyone who will listen! But every year at least one person asks me why we need an awareness month because, “Everyone knows about Down Syndrome” they claim. The truth is, while people know DS exists, most of the perceptions about people with DS and their lives are largely outdated and inaccurate. This is partially because the educational and social opportunities available for children like my son are growing and increasing every year in communities all across the world. These new opportunities help people with DS reach their full potential and bring a new sense of community among special needs families.
If you have a new child with Down Syndrome or are considering adopting a child with Down Syndrome you probably want to take advantage of these types of opportunities, but you may not know where to look for them. While every community is different and I can’t tell you exactly what’s in your area, there are some things that should be available no matter where you live and other programs that are common in most cities.
Therapies and special education are a HUGE part of life when you have a child with DS, and every child with DS is provided certain things through the Individuals with Disabilities Education Act (IDEA). Depending on your child’s age they will be provided services such as therapies (sometimes in-home or at school), play groups, pre-school, early intervention services, service coordinators, and employment services (for teens and adults). A good early interventionist or service coordinator can be extremely helpful in getting you connected to other services available in your state such as respite care funding, diaper programs (for older children), community support waivers, free medical equipment programs, and information about Medicaid eligibility. For more information about the IDEA, you can visit their official website here: https://sites.ed.gov/idea/
Community is vitally important to everyone but especially for families and individuals with special needs. When you are not part of a community, it’s easy to feel so alone, like no one understands your life or your child. But when you get connected… It’s hard to describe the kind of instant connection you can have with someone when you realize that you both have a child with DS. Thankfully, most communities have some type of special needs family support, and the National Down Syndrome Society (NDSS) has over 375 local affiliates all over the US. These organizations can provide emotional support, advice, and socialization for the whole family! Our local Down Syndrome Association is very active and has multiple events every month. With opportunities like mothers’ night out, private events at the local children’s museum, summer camps, and the annual Buddy Walk… there really is something for everyone! Your child’s service coordinator or early interventionist can help get you connected to one of these associations, or you can check the NDSS website here: https://sites.ed.gov/idea/ . Another great community can be found in online groups. I’m a member of a special mom’s support group on Facebook which has been very helpful for me. Besides just the emotional support and information on local events, the ladies in the group offer amazing advice on everything from potty training kids with special needs, to toys, to which movie theaters are the most “sensory friendly”.
Before I had a child with Down Syndrome I had NO IDEA about all the local events and opportunities available to people with special needs. There are so many that it would take me weeks to compile an accurate list of events in just the upstate of SC, but here’s my quick list of popular other opportunities to check for in your area:
– County Rec camps and swim lessons for special needs individuals
– Special Needs day or Sensory Friendly day at your local children’s museum or zoo
– Sensory friendly events at your county library
– Date night or respite night at your local church
– Kid’s gyms or playgrounds with inclusive equipment for kids with all abilities
– Sensory friendly movie times at the movie theater
– “Wings for All” program at your local airport to help older child practice before they travel
– Sports teams, dance groups, and horseback riding programs that are inclusive
– Holiday events like egg hunts, parades, or Santa encounters that have special needs areas or times
The point is, opportunities abound if you know where to look for them. And if something doesn’t exist yet, maybe you can help start it! Almost every event or opportunity for our kids exists because of a parent and a community. A parent who said “my kid needs this” and a community who helped make it happen!
If you have a child with special needs, tell me what’s your favorite event or opportunity in your community? I love hearing new ideas and discovering new programs!
written by Jennifer P | Adoptive Momma