Bristol mom Samantha Myers didn’t know her son had Down Syndrome until he was born: “It was probably the most profound shock of my life.” Heather O’Briskie of Branford found out during a doctor’s appointment when her baby boy was in utero. “I had a lot of nights where I cried and was just upset, just confused, didn’t know what to do.” Both women turned to a parent to parent program, First Call, sponsored by the Connecticut Down Syndrome Congress. Experienced moms and dads are matched in this two-year-old program with new or expectant parents to provide emotional support, hope, clarity and real-life information about raising a child with the genetic condition.
“It was a life preserver. You feel overwhelmed, you feel like you’re drowning in the questions and the uncertainty. We’re not taught the human side of it,” says Myers, who found her conversation with another mother much more helpful than the printed piece of medical information she was given at the hospital. “I thought, ‘Life is going to be OK.'” Volunteers are trained to participate in the program, modeled after a similar concept in Massachusetts. “Everyone you meet who has a child with Down syndrome wants to give back, wants to let people know what to expect,” says program coordinator Patty Alessandro, explaining that a new test, called MaterniT21, is providing parents with results at 13 weeks, earlier than ever before. “With that, you have to listen because they might not be ready to continue or they want to know all the options.” She says many parents feel pressure to terminate their pregnancies.
In light of World Down Syndrome Day on Friday, March 21, these three mothers hope to dispel old-fashioned myths that still surround people with the syndrome. “They are all individuals and they should be respected as such,” says Myers, playing with one-year old, Caleb. “He shows me what he wants on a daily basis. And, eventually, he will have hopes and dreams like the rest of us.” According to the National Down Syndrome Society, life expectancy has increased dramatically, from 25 to 60. “These children, these people are more typical than not,” she says, pointing out her son’s milestones. “He has exceeded our expectations of what our life would be like through leaps and bounds.”
First Call brochures can be found in doctor’s offices, birthing centers and online at www.ctdownsyndrome.org. “He’s brought joy — even to my co-workers, family, friends — he’s changed everybody’s life,” says O’Briskie, as she cradles 6-month-old, Jacob. For Myers, the First Call experience has come full circle. She is now a volunteer, giving concerned parents first-hand details about the time she spends with her spirited little boy. “I can’t tell you the gift that he’s given me. I have never felt love and acceptance more than with my son,” she says, with tears of pride shining in her eyes. “He is the light of my life, absolutely.”
