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Home › Articles › Special Needs › Beyond Surprise and Shock

Beyond Surprise and Shock

Learning Your Baby Has Special Needs

By Kelly Burgess

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Don't be afraid to grieve. Arm yourself with accurate information to become an effective advocate for your child. Take care of yourself. Actively seek support groups. Celebrate your child's abilities.

This sound advice comes from parents of children with a variety of special needs. Some of them were just typical parents-to-be who, after eagerly anticipating the arrival of their new baby, found themselves embarking on a journey they hadn't anticipated. They celebrated the uneventful birth of their child only to discover days, weeks or even years later that there were issues that required support beyond the usual demands of parenting.

Firsthand Advice
It was the desire to help new parents facing these issues that led Dr. Richard Robison to his current career as executive director of the Federation for Children with Special Needs in Boston, Mass., and as board member of the National Down Syndrome Congress. Dr. Robison's experience doesn't come just from his work. He is also the father of two children with Down syndrome, Amy, who is now 20 and a college student, and Justin, 18. The Robisons adopted Justin after seeing a story about him in the Boston Globe.

But before all that, in 1982, he and his wife already had one daughter, Christina, and were looking forward to the birth of their second child. When Amy was born, everything seemed fine, but within just a few hours, the doctors began talking about testing the newborn for Down syndrome. Robison and his wife were devastated. "It was like we were at the highest peak and then hit the lowest valley," Dr. Robison says. "We were lucky, because our pediatrician happened to be there, and she stayed with us all day, helping to soften the blow and making sure we knew what to expect. Without her it would have been a lot more difficult."

At the time, Dr. Robison resented the advice that he now considers most important: "to grieve for the child you didn't have." Time and raising three children to adulthood gave him a new perspective. "What I've come to appreciate is the fact that, even with our child with no disabilities, sometimes I had to let go of insisting they be what we want them to be and allow them to become their own person," Dr. Robison says. "While perhaps they aren't my fantasy child, they are their own person, and it's important that you allow them to become their own person."

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