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Mentors Making a Difference

ve8QAd   |   December 06, 2013

No parent ever wants to hear that their child has been diagnosed with special needs. At that moment, a mother and father are at their most vulnerable. This critical time will inevitably shape the future of their lives. In cases of a prenatal diagnosis, what happens next can mean the difference between life and death.

Unfortunately, in many situations, the medical establishment does a tragic disservice to families by relaying only grim expectations and worst-case scenarios, leaving parents in a state of fear. More disturbing is how some doctors are willing to offer and even push for the abortion of a “less-than-perfect” child. Consider the fact that 67% of pregnancies with a prenatal diagnosis of Down syndrome end in abortion. Countless children’s lives are lost without ever realizing their potential. Is there anything that could change these parents’ minds and cause them to choose life for their child?

In the case of Melissa Thomason, her son, 11-month-old Welles, was diagnosed with Down syndrome shortly after birth. In an article from The Charlotte Observer she speaks frankly about feeling overwhelmed by uncertainty and admitted if she had received the diagnosis prenatally, “I would have had serious questions about whether I wanted to continue the pregnancy or not.” Almost a year later, she has a different perspective, “I can’t imagine making a decision where he wouldn’t be in my life. There’s a misconception that this is going to end your future, end your child’s future, end the way you’ve always envisioned your life was supposed to go.”

Now, Melissa is using her life experience to help others in a mentoring program through the National Down Syndrome Society. The program matches parents who have just learned their baby has a Down syndrome diagnosis with an experienced Down syndrome parent. They’re able to ask questions about what to expect, the impact it’s had on their family and how they coped with the diagnosis. Mentoring cuts through the medical theory and replaces it with the reality of a family who’s actually living through the same situation. It gives hope, rather than fear.

Recently, I had the sheer joy of filming a TV episode for Facing Life Head-On that showcases the wonderful work of an organization called GiGi’s Playhouse. GiGi’s offers families of children with Down syndrome a community of education, support and encouragement, from diagnosis and birth through adulthood. It’s truly breaking down barriers and reveals the amazing potential within these special lives. When founder, Nancy Gianni, learned of her daughter GiGi’s diagnosis with Down syndrome, she faced negativity from doctors. They didn’t give her much hope for her daughter’s future. But Nancy was determined to stay positive. In fact, as a result of her efforts, her doctor now credits Nancy and GiGi with changing the way she sees Down syndrome.

Nancy made it her mission to make sure other Down syndrome parents know they’re not alone. She shares, the “abortion rate makes our kids disposable and puts fear into parents. It makes it seem like there is no place for them.” Nothing could be further from the truth. “It’s like an instant family,” explained one mother about the relationships at GiGi’s. Connecting with other parents is vital. GiGi’s Playhouse creates an environment that fosters optimism by witnessing how other families at various stages are developing and thriving.

Megan Pries, mother of five-month-old Parker, has experienced the positive results, “It gives hope. When you walk through the door, it’s such a positive place. There’s no more hearing what your child can’t do.” GiGi’s works with the children in several key areas including social development, vocational abilities, physical therapy and motor skills, literacy and life skills. It’s designed to give the family everything they need to help their child succeed. Megan says that young Parker is already proving the “naysaying” doctors wrong.

When 23-year-old Ashley Jones was born with Down syndrome, medical professionals advised her parents to have her institutionalized. Instead, her parents, Mike and Paula, persevered to give Ashley a normal life. When you meet Ashley, you’ll see a smiling and cheerful young lady who enjoys singing and socializing. She attends GiGi’s adult program where she’s working on her reading skills with the goal of eventually entering into a college program. Her parents’ advice to other parents is, “Learn as much as you can. You must become an extremely strong advocate for your child.”

Asked what parents need when facing a Down syndrome diagnosis, Natalie Miro, the mother of an active young boy named Joey, expressed it quite well, “Just take a deep breath. Your child will make up for any fears or issues that you’re having. Time is definitely something that helped me. I needed a chance to kind of grieve. And that’s okay to grieve, process it and then move on.”

When parents face a diagnosis, they can feel alone, fearful and inadequate for the task ahead. Overwhelmed, they may think abortion is their only choice. However, given the opportunity, through mentoring, education and support, those misconceptions can be countered and lives can be saved—resulting in a lifetime of joy and love. I fell in love with these kids in just the few hours we were with them. Imagine the happiness the parents experience.

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