When I held our beautiful boy in that hospital room after the neonatal specialist confirmed the diagnosis of Down syndrome, I felt lost and overwhelmed. We had no knowledge of whether he was physically healthy, and we had no previous experience with an infant with special needs. The nurse gave us a stack of literature in a folder. As we read, we began to wonder: How serious would our son’s delays be? Would he be excluded by other people? Would he feel left out? Would people think he was capable of less than he actually was? Would his friends, his teachers, and others accept him with a clean slate? All these thoughts, emotions, and questions flooded our minds.
We had friends come by with words of encouragement and hugs and kisses. It was the strangest sensation that even though we were feeling lost, none of these kind visitors could give us a road map with directions for navigating through this. What we really needed was a personal guide—someone who once was as lost as we were now feeling. And that is what Jean was to us.
How did we connect with Jean? A neonatal specialist who knew about The Family Connection of South Carolina asked us if he could contact them on our behalf. Because the neonatal specialist had met with The Family Connection staff and heard stories about families who had been matched, he had an understanding of parent to parent support and believed in its importance. He also knew what to do to make a referral on our behalf—first obtain our permission and then call The Family Connection. Not knowing what to expect of this referral but at the same time looking for anything we thought might make our lives easier, we gave our approval. The Family Connection found a match for us that day.
Although we didn’t realize it at the time, the process that The Family Connection used to match us with Jean was a careful one. When the neonatal specialist called The Family Connection, he spoke with the referral coordinator and shared general information about our family—Karl was our first child, he had Down syndrome but there were no other medical issues, W.C. and I were in our thirties and had careers, and we both wanted to talk to another parent who had a child with Down syndrome. The referral coordinator used this information to check the Family Connection database of trained supporting parents to find the best match for us. Jean called our hospital room later that day. She introduced herself to us as a support parent and told us that she had a son who had Down syndrome. She asked if she could stop by. Although it was the end of a long day and we weren’t sure that we wanted to meet her, we knew that she had experienced a day like ours when her son was born. That made her different from the others who had come to visit, and that made the difference.
When she came I remember acting cool toward her—after all I didn’t know this woman. Could she help us? She looked normal, but how could she be? Yet I know on that day I had more in common with this woman than with any of our other visitors. She remembered the confusion, the fear, the loneliness, and the sense of being lost. And yet she knew her way around.
Jean briefly told us about her son, who was 7 years old. We asked about his birth, his life, and his future. She described him as quick, active, and a lover of T-ball. She showed us pictures, and everyone looked happy. For the first time we had hope that our family could go on and do things that typical families do.
When Jean left she promised to give us a call in a day or two to see if there was anything she could do. She left us her telephone number in case we wanted to call her. She called us several times to see how we were doing. It seemed as though she would call at the right time—like the day we got Karl’s official diagnosis from the geneticist. She listened and understood. That was what we needed.
Over the next several months, our appreciation of Jean and her family grew. Jean continued to encourage us through her telephone calls and visits, and she helped us connect with the organizations that could provide Karl with the early intervention services that he needed. Over the course of the last several years, we have had at least 30 contacts with Jean. Now that Karl is 5, we don’t connect with her as much. But we know that she is a telephone call away.
This story was originally published in The Parent to Parent Handbook.
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