21 Stories for WDSD- That Extra Invisible Thing

That Extra Invisible Thing

When I was pregnant with our fourth daughter, Grace, we knew she had a serious heart defect. When Grace was born, all we cared about was the health of her heart and when we could have surgery to correct it. People told us she had “Trisomy 21” and “Down syndrome”, but we really were more concerned with her just staying alive. With God’s help and the skilled hands of surgeons at the Childrens’ Hospital of Philadelphia (CHOP) Grace’s heart defects were repaired and we started our journey with raising a child with Down syndrome.

Grace was about two when we attended a symposium at CHOP and first heard about co-occuring Down Syndrome and Autism (DS-ASD). We heard that this was very rare (about 5% of the total population would also have autism) and it was mostly boys who had this condition. We breathed a sigh of relief, and continued to enjoy our youngest daughter.

Grace was in a combined Kindergarten / first grade class when we had her triennial school evaluation completed. Her speech had stalled for the previous three years. This was despite the fact that we had a very experienced and caring speech therapist. Her Kindergarten teacher also said she suspected Grace had Autism. So – You can see a heart defect. You can see Down Syndrome. No denying any of these. But Autism? In a girl? This was super easy to deny! And we would surely get proof that she did not have Autism.

We played along with the school and had Grace evaluated by the Delaware Autism Program (DAP). We also got on the waiting list at Kennedy Krieger to see the expert in this field. We were amused … and confused… when DAP came to observe Grace at school. It was time to stop working on something and Grace showed the hand to her teacher and said, “Not now darling, I’m busy!” That was definitely a moment of brilliance which disqualified her from going into the DAP program – and affirmed our hopes. Then Dr. Capone gave her a diagnosis of PDD-NOS and we added Autism as an IEP classification – and kept doing what we had done before.

What do you do with an invisible diagnosis? I was too busy getting this Down syndrome thing down to become an expert at something else. Besides Grace just didn’t do a lot of things I read kids with Autism do – at least I wasn’t ready to admit any of it. So – we took Grace to be evaluated – again. At CHOP and AI DuPont Hospitals. They all confirmed the diagnosis.

It took us a long time to turn denial into action. When Grace was still not reading by third grade, we had an Independent Educational Evaluation and finally started to ask the school for meaningful changes in Grace’s IEP. It was not until 6th grade that we switched to an Autism support setting for Grace. The difference has been phenomenal. Grace went from being a complacent, prompt dependent girl to being vibrant, independent and sassy! She’s different than her peers with Down syndrome and different than her peers with Autism. She has elements of both and some things that are uniquely Grace.

Life didn’t stop when we acknowledged that Grace has co-occurring DS-ASD. Grace has a wonderful time at school and is included in academics as well as after school activities like the school musical. We’re active at home and in the community, and enjoy many sports and social events.

To parents who want to deny that invisible thing – DON’T. Embrace it just like you did the Down syndrome diagnosis. Do your best to get interventions and programs as early as you can. It makes a lot of difference. And be prepared to take the slower, s…l…o…w…e…r  road.

About the Author: Hazel Cole lives in Newark with her husband Robert, Grace, and daughter Lydia. Hazel retired from corporate life to work part-time as a Parent Consultant for parents of children with special needs. Robert was inspired by Grace to become an emergency nurse at Christiana Hospital.  Our whole family feels blessed and improved by having Grace in our lives.