Teaching Children with Achondroplasia About Their Identity

Rebekah and Chris were both born with Achondroplasia, more commonly known as dwarfism. They are married and have two children, Ryan–who received no diagnosis for dwarfism, and Ella–who does have dwarfism.

Speaking of her daughter, Rebekah says, “I just want to raise a competent child who knows who she is. Dwarfism is a part of her, but it doesn’t define her.”

Because Ella has parents who intimately understand what having dwarfism is like, she is growing up in a world where her differences are celebrated. She is in an environment at home where she can be herself and feel normal. “We don’t treat her any differently than her brother,” her mother, Rebekah says. She absolutely adores her daughter’s personality and wants to prepare her to go into the world by telling her who she is as a person.

Advice for Parents Who Receive an Achondroplasia Diagnosis for Child

When they decided to have kids, Rebekah and Chris wanted to know how likely it was that their children would have dwarfism. The doctors said that there was a 25% likelihood of their children not having dwarfism, a 50% chance of them having dwarfism, and a 25% probability that they would have double dwarfism. Double dwarfism meant that the child would not live long after birth.

Rebekah recalls, “We found out at 26 weeks that we were having an Achondroplasia dwarfism child just like Chris and me, and we were excited.”

Chris expressed feeling some fear when they received the news because he had been made fun of as a child. He didn’t want his little girl to have to go through that, but he was glad that Ella would be just like him.

Rebekah also experienced the hardships of her childhood, such as friends not calling her to play in large group settings because she was different. However, she and Chris expressed sincere appreciation for their own parents, who helped them in many ways to grow up in a sometimes harsh world. They gave them the extra attention that they needed.

Rebekah relates, “I think what our parents did best was helping us understand who we are, living with dwarfism and knowing that we were the ones who defined who we are and not the people around us.”

Another valuable resource for Chris and Rebekah as children was Little People of America. Each of them were given a mentor with dwarfism to get them through the hardships they would face in life. These mentors understood their situations on a deeper level than most others. It allowed them both to meet others with their same challenges and gave their families a chance to talk with other families who had children with Achondroplasia.

Teaching People About Achondroplasia

Rebekah feels strongly about teaching others correctly about people with dwarfism. She sees that the world sometimes shuns or stares at people who are different, but that is only caused by a lack of understanding. When Ella was a baby, people would come up to Chris and Rebekah and want to see their daughter in the stroller. It was hard for Rebekah when all they wanted was to see what Ella looked like rather than understand the diagnosis that she had. On the other hand, there are many people who sincerely desire to care for and learn about dwarfism.

“I love it when the parents or the kids ask questions [about dwarfism],” Rebekah says. “I find that when the parents don’t explain what’s going on [to their kids], it gives them fear of that difference.”

Rebekah, Chris, and Ella know who they are despite having dwarfism. They are showing others that appearances are not important compared to qualities from within. In a world that desperately needs understanding people, Rebekah, Chris, and Ella are paving the way as they teach others what is most valuable in every individual.

Rebekah is a great resource to parents who receive a Dwarfism diagnosis for their child. You can read a letter she has written to these parents here.