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My Most Helpful Supporters in the Down Syndrome Community

Having a wide network of support is not unusual when you are raising a child with a disability. Therapists, doctors, early intervention specialists, and teachers all play an important role. Often, in my experience, the most helpful support can come from other parents who have a child with the same diagnosis.

Chris visited the hospital on the night my son George was born. She brought books that cleared up many of the misconceptions I had about Down syndrome, and the parent support group phone number. This resulted in a visit from the group’s founder, Gina. Armed with a welcome package, she crooned about how beautiful my son was. She also jokingly described how she wished she could steal George and take him home with her. Later I found out Gina says this to every family with a child with Down syndrome. It was exactly what I needed to hear.

As George grew older, there was a baby playgroup with other moms of children with Down syndrome. It was great to make new connections, but I found myself comparing his milestones to the other babies. A mom gently reminded me that George would meet those milestones at his own pace. And when those milestones happened, they would be something to celebrate.

In the early years, I would even introduce myself to parents I didn’t know to ask questions or hear their stories. Whether interactions developed into friendships or were a brief encounter, each had a role in helping me accept, understand, and become a better mom.

A few years later, my family and I were eating out while vacationing in California. A mom approached the table carrying her 3-week-old baby. She mentioned that we had a beautiful family and then broke down crying. I predicted what was coming next. She had just received a call that her baby was diagnosed with Down syndrome. I listened and said her son was beautiful. I suggested she get involved with the Down syndrome parent group, and to celebrate every milestone.

I was likely the first parent she had spoken to about Down syndrome. I felt anxious wondering if I had said what she needed to hear. I thought about parents and how their work throughout George’s life had prepared me to talk to this mother. I prayed she would find supporters like mine.

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