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Little People

Social Challenges for Children With Skeletal Dysplasia

By Teri Brown

When your child is diagnosed with a form of Skeletal Dysplasia, also known as dwarfism, it takes time to adjust. But it isn't the end, say many parents whose children are affected by the condition; it is just the beginning – the beginning of viewing the world from a different perspective and the beginning of teaching your child how to believe in oneself in a world that won't always be welcoming.

Karyn Noel is the proud mother of a 10-year-old daughter diagnosed with Skeletal Dysplaysia. For Noel, raising a child with dwarfism has been both a joy and a challenge. The challenge, she says, lies in the fact that no matter how much she tries, there are things she just won't be able to understand.

"There is a vast difference between being an average-size parent of a dwarf child and being a dwarf parent of a dwarf child," says Noel. "I am an average-size parent of a dwarf child and my statements are from this perspective. I can never know exactly what my child thinks, feels and experiences. I can only guess, because I have never experienced this myself."

Noel says support for both her and her child has been critical. They are active members of an organization called Little People of America. Noel says that as an average-size parent, one needs to know one's child will survive and thrive.

"You need to see real-life examples of high-functioning people who are affected by dwarfism, so that you can have hope for your child," says Noel. "You need to learn the practical aspects of mobility, accessibility and adaptations. You need emotional support because of the challenges and obstacles you face."

Parents of children with Skeletal Dysplasia need to understand how to arm their children for the future. School can be a place of both great success and great sorrow for the average child. For the little person, the experience can be daunting. Noel's daughter has experienced cruelty because of the actions of others, but because of the support she gets from her parents and other little people, she keeps moving forward.

Noel has seen the teasing change throughout her daughter's developmental stages and ages. "Early on, the other kids would call her 'baby' because she was smaller, ask why her legs are bowed or tell her she can't do something because she's too little," says Noel. "My daughter was born with self-esteem and is a social child. It never occurred to her that she couldn't do anything. But just like any other human being, her feelings get hurt when someone [puts her down]."

Noel says part of being the parent of a little person is understanding there are things from which you cannot protect them. "Her pain wounds me as well," says Noel. "I can only hold her, comfort her and talk it through. I must empathize with her and validate her feelings. I've been told over and over again by other adult little people that it is most important to validate her feelings. 'Yes, it does hurt.' 'Yes, that was mean.' 'Yes, I wish it were easier too.'"

Dan Kennedy is author of Little People: Learning to See the World Through My Daughter's Eyes

Want to see more?

• What's the Difference? Mainstreaming Physically Challenged Teens
• Do You Like Me? Social Inclusion for Preteens with Special Needs
• Special Treatments: Complementary Therapies Make a Difference for Many Children
• Talk about it!