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.
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."
The Power of Knowledge
Shilo Young of Oregon City, Ore., sees her daughter, Ashly, becoming her own person more obviously each day. "In school, she loves science and recess the most and is totally enthralled with lava and volcanoes," says Young, laughing. "I had to take her to see Mount St. Helens because she was just so interested in the whole subject."
Ashly, 9, was born with an extremely rare skeletal disorder. At first, the doctors thought Ashly had Down syndrome, but tests came back negative. They warned Young, however, that there was definitely something wrong with her daughter. They just didn't know what it was.
Young went into denial, a typical reaction for parents when doctors can't provide a definite diagnosis. "Ashly was having some sort of little seizures, but she seemed so normal in every other way that I refused to believe she was sick," Young says. "Finally, when she was about 18 months old she completely stopped growing. That's when I realized that there was a problem."
Unfortunately, the medical community couldn't figure out what the problem was, so Young began to do her own research. Thanks largely to her efforts, Ashly was eventually diagnosed with geleophysic dysplasia, a disease related to dwarfism.
Dr. Robison encourages this kind of parental involvement. He also strongly encourages parents to join support groups, which he notes are available in every state. "It's important that peopleget reliable, factual information about their child's condition so that they know what they're dealing with," Dr. Robison says. "I wanted to know not just what my child couldn't do, but what she could. What made her different, and how was she the same as my other child? There's a lot more research for some conditions than others, but the primary thing is just to become as informed as possible."
Dr. 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."
Specialists in Tourette's prescribed medication for the repetitive twitching, while specialists in ADD prescribed Ritalin. Since Justin didn't have hyperactivity associated with his ADD, Bechtel wondered about the need for Ritalin. When she got her computer last year, she researched the subject and discovered that Ritalin could exacerbate Tourette's symptoms. She insisted that Justin be taken off the Ritalin and given behavior modification at school. As a result, he's developing organizational skills that help him compensate for ADD.
Bechtel's success is a testament to the changing view of society toward children with special needs. When Amy Robison was born, Down syndrome children indeed, virtually all children with special needs were often raised in isolation. Thanks in large part to the work of parents like Dr. Robison, increasing public awareness and education has resulted in the realization that all children are able to overcome limitations and become contributing members of society.
"The lack of information available to me when Amy was born is what drives me to do what I do today," Dr. Robison says. "When I did finally find that article in Psychology Today, what I saw was a beautiful picture of a little girl with Down syndrome. Having that image of someone who just looked like a regular little girl made me determined that, no matter what, we were going to raise Amy to be a regular part of our community. There was a need then, and there is a need now, to provide opportunities for other parents to do the same."
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
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