Adjust Conversations to Your Child’s Age
Children’s ability to understand their diagnosis and the questions they have about it change as they grow, says Pekala. “A preschooler may ask why they need a stool, while an older child may be thinking about height, friendships, healthcare, or independence.”
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Toddlers and Preschoolers (Ages 2–5)
“Young children need to learn about body awareness, like any preschooler,” says Frumberg. “Teach them how their body grows.”
“Keep it simple,” says Pekala. “Explain that bodies come in different shapes and sizes and that their bones grow differently. Name hypochondroplasia naturally, use inclusive books, and focus on belonging and practical independence.”
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Early Elementary (Ages 6–8)
“At this age, I would still emphasize the importance of caregiver modeling; it is important to be mindful of the language we use to describe your children and their differences, as they will be listening and internalizing this,” says Vitale. “As they develop more social awareness at this age, it is important to highlight that everyone has differences that make them unique.”
Explain that hypochondroplasia is a genetic condition and is not something the child caused or can “catch,” says Pekala. Discuss adaptations and how to handle respectful questions or teasing, she says.
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“This is also an important age to meet other children and adults with dwarfism,” says Pekala. “Community helps children understand that they are not alone and gives them role models who share similar experiences.”
You can help your school-age child by encouraging them to explore other interests, like music, arts, and sports, so they have various aspects of their life that contribute to their self-view, says Vitale. “This is also a good age to introduce the idea that differences themselves are not inherently positive or negative. Rather, they are part of human diversity,” she says.
Tweens and Preteens (Ages 9–12+)
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“Around this age, children tend to become more aware of social differences and also tend to encode much of their self-worth as tied to social interactions,” says Vitale, who encourages parents to validate feelings and struggles as they come up.“Help shift away from comparisons and encourage your child not to use words such as ‘normal’ when describing the height of others,” says Vitale. “Instead, model language such as ‘typical’ or ‘average.’”
Encourage your teen to participate in healthcare decisions and connect with peers and adults with hypochondroplasia and others with short stature, says Pekala. Let them know that pride, frustration, embarrassment, and curiosity can all coexist, she says.
It is also helpful at this age to foster a sense of control, and one way to do this is through self-advocacy, says Vitale. “As the child ages, there will be more need for them to speak up for their needs, maintain self-respect, and learn to balance controllable and uncontrollable factors.”
