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Beyond Surprise and Shock
Learning Your Baby Has Special Needs By Kelly Burgess
Go OnlineDr. Robison also points out that one big difference between his experience as the new father of a special needs child and the experience of today's parents is the Internet. He remembers after Amy was born going from one place to another trying to find a particular article about children with Down syndrome. Finding information was expensive, difficult and time-consuming. Nowadays, just a click of a mouse can bring a new parent as much information as they can handle.
Sometimes, as Young points out, it's almost too much to handle. Although she was relieved the Internet and the experts she consulted could help her to pinpoint Ashly's condition, she also discovered that children with geleophysic dysplasia have a poor life expectancy. She has to deal with that grief every day, but she's also learning to detach herself from her constant preoccupation with Ashley and her needs.
"I do have a special needs child, and she is sick a lot and needs a lot of my attention, which I'm happy to give her," Young says. "But I've also learned that I have to take care of myself eat right, exercise, color my hair whatever makes me feel good. If I don't take care of myself, I'm not a good role model for Ashly."
But knowledge, whether through the Internet or other sources, can help parents make good decisions for their children. Jena Bechtel, of Pittsburgh, Pa., was shocked when, at age 6, her son, Justin, was diagnosed with Tourette's syndrome and attention deficit disorder (ADD) two conditions that often accompany each other.
"I did not believe it when the school contacted me and told me there was a problem," Bechtel says. "I admit that I was very young, and Justin was my first child, but I honestly hadn't noticed anything at all. I actually had to go to the school and sit and observe him in a class setting to realize that there was a problem."
