Down Syndrome and Autism: Coping with a Dual Diagnosis
Adam Church, 11, has a rare, dual diagnosis of both Down syndrome and autism. After a normal pregnancy, Julie and Roger Church were shocked to learn their firstborn had Down syndrome shortly after his birth. Julie Church says she felt isolated and different as a new mom with a child with special needs, and she desperately wanted to connect with others going through the same thing. When Adam was a still a baby, she began attending a support group through the Family Network of Central Carolina for parents with children with Down syndrome. "It was overwhelming and helpful at the same time," Church says.
After experiencing an enourmous outpouring of support, Church was inspired to start the Down Syndrome Network in 2002, which has grown and evolved into the Down Syndrome Network of Greater Greensboro. "I felt healing by giving to others through this group," Church says.
In 2004, she and her husband organized the first Buddy Walk to promote understanding
and acceptance of people with Down syndrome in the Triad. "Our goal with the first walk was just to bring all of these families together with friends and co-workers. We wanted to show others that these kids with Down syndrome aren't scary and share how beautiful and special they are."
The Buddy Walk, now in its ninth year, has continued to grow and raise awareness and funds for the Down Syndrome Network of Greater Greensboro.
As Church experienced life with Adam alongside other mothers in her support group, she began to notice Adam was doing things a bit slower than the other children with Down syndrome. "We approached Adam's education with realistic expectations," Church says. "We were not going to try and make him more than he is." Adam began public kindergarten in self-contained classes but always performed in the lower level. When he was around 7½ years old, a caring teacher recommended Adam be evaluated for autism, which was confirmed through testing through the school system.
"It's pretty rare to have a dual diagnosis of both autism and Down syndrome," Church says. "I felt like I knew Down syndrome and was handling it well. Then with the autism added to it, I had learn [about] a whole new diagnosis."
Adam also has Celiac disease and thyroid issues, so the Church family had to learn a new way to feed Adam. Heart problems are also common with Down syndrome and when Adam was a baby, he underwent open heart surgery. The surgery was successful and fortunately, he has not had any other problems with his heart. In relation to his autism diagnosis, Adam receives ABA therapy and speech therapy and is responding well with improved vocabulary and pronounciation.
Church says she has found it helpful to also connect with other families with children with autism. She and her family had the opportunity to attend Victory Junction Camp for families affected by Down syndrome. They were placed in a shared cabin with a family from South Carolina with a son around the same age as Adam, also with the dual diagnosis. "It was so nice to finally meet someone dealing with the exact same issues as we were," Church adds. The families have stayed in touch and get together as often as they can.
Church credits her strong support network of other families through the Down Syndrome Network and her religious faith in helping her family deal with Adam's challenges and helping them to accept him for who he is.
"The goal of a lot of families with kids with Down syndrome is to be able to say, 'my kid is just like yours.' We can't say that about Adam," Church says. "My best advice to other families with children with any special need is to just love your child where they are. Don't try to make them more than they are ready to be."
Julie and Roger Church live in Greensboro with their son Adam, 11, and daughter, Tatum, 8.