Contributing authors: Andrea Schelhaas, Cruzanne Macalligan, and Colleen Gioffreda
When you learn your child has dwarfism, it’s natural to have many questions. That curiosity is a great thing – it’s part of how we learn and grow as parents. The good news is you’re not alone in any of this. The dwarfism community is open, welcoming, and full of families around the world who love sharing their experiences and supporting others.
This guide is written by families with lived experience including individuals with dwarfism who are also parents of children with dwarfism and average-height parents of children with dwarfism.
This article will be developed into an official GSF and Lettercase resource to share with friends, families, and new parents of children with dwarfism. Stay tuned for updates!
We just received a dwarfism diagnosis for our child; how do we tell our friends and family?
In life, we cannot control the reactions, actions, or words of others. But we can take control of our own. While it may be difficult in the beginning, your tone will play a role in how others see and support your child. Along this journey, you will likely serve as an educator, ally, and advocate as you help others understand your child’s diagnosis. Many people will be understanding and supportive. Others might not understand right away – and that’s okay. Your responsibility is to your child.
How and when you share this information is up to you, but your approach can set the tone for how others will receive it. Many of us who have gone through this experience before have found that it is helpful to share from a place of openness and curiosity. You might say something like:
“We just learned that [name] has dwarfism. We have a lot of questions, too, and we’re excited to learn more with your support.”
You may decide to tell your friends or family in person, over the phone, through a letter, or with a social media post. Take some time to reflect and find the right approach for your family. Some families have found it helpful to consider how they would like to revisit this moment when their child is older and ask about it. For example:
“I found out you had dwarfism when you were still in my tummy. I was a little bit nervous, but I was so excited to meet you and learn more about who you are.”
“We did not know why you were a bit smaller than other babies, until the doctor told us you were a little person. We thought it was amazing to learn all about dwarfism!”
Set your family values, early.
Being in a family is about belonging. Family members should love, support, and accept one another for who they are. Siblings especially notice differences in themselves or each other early, so having open, honest conversations about dwarfism from the very beginning will help create a family culture of understanding, empathy, and pride.
When will other people notice that my child has dwarfism?
When your child is very young, many people may not notice a difference. Some days you may feel like sharing your child’s story because someone has shown genuine, compassionate interest in learning more. Other days you may just want to finish grocery shopping as quickly as possible and go home. (We get it, we have been there!)
While being an advocate is an important role for all parents, whether they have a child with a disability or not, you do not have to educate every stranger you meet about dwarfism. In the early years, you can create a strong foundation if you focus on establishing support and understanding within your child’s immediate world, which includes siblings, other family members, friends, teachers, neighbors and certain community members.
What do I do when people start to notice their differences?
As your child gets older, they will start walking and talking, but will probably stay smaller than their peers. More people may begin to notice and ask about your child’s difference. Remember, it is always up to you if you have the energy, time, or desire to share.
When you do want to share, here are some tips that other families have found helpful.
Smile first.
If your child is with you, he or she will notice how you speak, feel, and express yourself when talking about their diagnosis, even when they are young. Smiling signals that dwarfism is not something negative or shameful – it’s simply part of who your child is. If you show you are proud of your child, it will help them feel proud of themselves, too.
Use language you are comfortable with.
Most people with dwarfism or skeletal dysplasia are comfortable with the terms “short-stature,” “little person,” or “dwarf.” Using these terms in person-first language is often preferred (as in “he is a person with dwarfism” or “he has dwarfism” instead of a defining or declarative statement such as “he is a dwarf”).
Examples of things you might say to a stranger who notices your child’s differences:
“My child is a little person.”
“I can see you’ve noticed my child is different. They have dwarfism.”
“My child has dwarfism – that means that as an adult, they will have short stature.”
*Please note that the word ‘midget’ is considered a derogatory slur and highly offensive to the dwarfism community.*
Embrace that all children have things in common.
It can be helpful to remind people that while your child may look different or move differently, they are also just like any other child.
Depending on your child’s age, this could look like:
“My child has dwarfism. Their name is [NAME], and right now they are getting into everything and their favorite food is bananas!”
“My child is a little person. This sure hasn’t slowed them down – we spent all morning at the park! Isn’t it a beautiful day to be outside?”
“I can see you have noticed my child. They are a little person. As an adult, they will be shorter than average. They are all about music right now – Taylor Swift is on repeat in our house!”
Remember there’s no such thing as ‘normal.’
It can be common to refer to non-disabled people as “normal.” But in reality, there’s no such thing as ‘normal’ – humans come in all shapes and sizes and every one of us is unique! Instead of ‘normal,” try using words like ‘average’ or ‘typical’; you may have a child with dwarfism, and they may have ‘average-height’ siblings.
“I am average-height; my daughter has dwarfism. Her brother is also average-height.”
Be sure to choose language that feels most comfortable and appropriate for you and your family. Keep in mind that, as your child gets older, they will develop their own preferred language, too. Of course, in reality, we should always use someone’s name to address them, rather than their diagnosis!
Be a champion for how all bodies are cool.
Since the dawn of time, about 117 BILLION people have lived. That’s 117 billion ways to be human. Amazing!
Your child and their body is just one of the wonderful ways to be human in a rich and beautiful continuum of human variation. For younger children, this message is easy to share with the phrase: BODIES ARE COOL.
For example:
“Some bodies are big, some bodies are small. Some bodies are fast, some bodies are slow. All bodies are cool!”
This message can help all of us – children and adults – to embrace our bodies and celebrate human diversity.
Check in with your child as they get older.
Once your child is old enough, encourage them to answer these questions themselves, if and when they are comfortable doing so. Modeling positive language and healthy boundaries early on can give your child the tools they need to develop their own way of navigating these situations. Keep in mind that your child may not want to educate the public on their dwarfism or their body. That it is always okay and should be their choice. For safety reasons, encourage your child to be polite and respectful in these situations.
You may say:
“You do not have to answer questions about your body. You can be kind and polite, but it’s always okay to say no.”
Teach your child phrases like:
“That’s kind of a personal question.”
“I’d rather not answer, thanks for understanding.”
There may come a time when someone says something ignorant, unkind, or with cruel intention. As hard as it may be to control your reaction, having a positive, kind, and calm response can make a big difference in how your child feels about themselves.
This might look like:
Child: “Why are they staring at me?”
You: “I don’t think they’ve ever seen a little person before – imagine that!”
If someone says something unkind, you may say:
“It seems like that person has never learned to be kind. They must be very unhappy. It’s sad that they haven’t learned that all bodies are cool.”
Why Sibling Conversations Matter
Siblings play an important role in shaping how a child with dwarfism sees themselves and how your family interacts with the world. With thoughtful education about dwarfism, siblings can:
- Become strong allies and advocates.
- Feel more confident answering questions from peers.
- Avoid misconceptions that could lead to confusion, fear, shame, or resentment.
- Have pride in their family’s diversity.
- Grow up to be more confident, compassionate, and open minded.
It’s okay if you don’t have all the answers. If a question stumps you, saying “I’m not sure, but let’s learn together” is helpful. Give siblings time to process, ask new questions, and build understanding at their own pace.
Conversations with siblings about differences can be complicated because sibling dynamics are complicated. These conversations are valuable opportunities to highlight the things you have in common as family members, and the things that are different between individual family members.
Tips for talking to siblings
1. Be Open & Honest
Use clear, age-appropriate language:
“Dwarfism means your brother will be shorter than most adults, and that’s just one part of who he is.”
Avoid framing dwarfism as something “wrong” or “bad.” Instead, emphasize difference as part of human diversity:
“Everyone is unique, and this is one of the wonderful ways that he is unique.”
Be willing to say, “I don’t know—let’s find out together.” This models curiosity and learning.
2. Validate and Normalize Feelings
Let siblings know it’s okay to feel proud, curious, frustrated, or even jealous. You can say things like:
“You can always talk to me about how you’re feeling.”
“Your sibling having dwarfism is just one part of who they are, just like you have lots of things that make you who you are.”
Siblings may notice that their brother or sister with dwarfism receives more attention in school, in public, or from extended family. This is common. It can help to explain that their sibling is not necessarily seeking this attention. Often, the extra attention may be due to people not knowing anyone else with dwarfism – they simply don’t have the knowledge and experience that a sibling does.
3. Build a Sense of Community
Introduce siblings to other families with dwarfism through local or national conferences and community events. Through these interactions, your child can meet other average-height siblings and talk about their unique experiences.
Share informative books, documentaries, and media featuring people with dwarfism thriving in different roles. Oftentimes, “reality shows” featuring people with dwarfism are not actually realistic and could be viewed as sensationalized or voyeuristic. Screen them ahead of time so that you can pick shows that are a nice fit for your family.
Explain advocacy in simple terms:
“Sometimes people stare or ask questions because they don’t understand. We can teach them about dwarfism and how we can all support each other.”
4. Empower Them as Allies
Role-play with siblings so they can practice responses for when classmates ask questions:
Classmate: “Why is your sister so small?”
Sibling: “We are all different in our own way. My sister’s bones grow slower.”
Reinforce respect and boundaries:
“It’s not okay for people to touch or pick up your sister without asking—just like it’s not okay for people to touch or pick up anyone without asking.”
Common Questions from Siblings
Why is my brother so short?
“Why is my brother so short?”
“He has dwarfism [or insert diagnosis]. That means his bones grow differently, so he will be shorter than most people.”
Will I have dwarfism too?
“Will I have dwarfism too?”
“No, you don’t have dwarfism. Some people are born with dwarfism and some people are not; it’s just one way bodies can be different.Some bodies are big, some bodies are small. Some bodies are fast, some bodies are slow. All bodies are cool.”
Can people with dwarfism do the same things I can?
“Can people with dwarfism do the same things I can?”
“Yes! They might need to do them in different ways, like using a step stool or asking for help, but we all need help for different things. Just like how you need help to do [X] and I need help to do [Y].”
What if kids make fun of my sister?
“What if kids make fun of my sister?”
“That can happen when people don’t understand. If it does, tell an adult. We can help teach people about dwarfism so they understand and don’t say hurtful things.”
Will my brother get married or have a job?
“Will my brother get married or have a job?”
“Absolutely! People with dwarfism go to school, have jobs, fall in love, and do all kinds of amazing things. I am excited to see what both of you do in the future.”
Guiding Conversations at School
It can seem like every week children change and grow in different ways. As children get older, they will have different questions and start to understand the world in new ways. This means it is important that educators discuss dwarfism or disability in an age-appropriate way. By educating your child’s teachers on how to discuss dwarfism, the entire classroom and school community will benefit.
Preschool & Elementary School
Use simple words and positive language. Provide specific examples for educators:
“Bodies are cool.”
“Dwarfism means someone’s bones grow a little slower.”
“Everyone is unique in their own way and that’s what makes the world so fun.”
Read books featuring characters with dwarfism and other differences – there are many amazing children’s stories about diversity!
We teach children to ask questions and be interested in the world around them, so allow space for curiosity and questions. It’s natural for kids to notice differences, but it’s how we respond to their questions or comments that can make all the difference in how they learn. Discuss how we can politely ask people questions about themselves, but also how they don’t have to answer.
Middle & High School
It can be helpful to discuss topics like bullying, respect, and advocacy.
Define bullying and the importance of reporting it.
Bullying is repeated, unwanted behavior that is intended to harm, intimidate, or distress another person or group. It is important that children know this definition and recognize the long-term impact these actions can have on people – bullying is NEVER okay.
Create a safe space for your child to report bullying or other undesirable behaviors to you and other trusted adults.
Your child may not want to report a school bully, for fear of retaliation. Creating a plan to navigate these situations in partnership with school administrators, students, and parents can help your child feel safe to report bullying. For example, teachers may tell the bully that other students reported the incident, a security camera picked up the incident, or a teacher saw something, rather than naming the victim as the reporter. Sometimes “bullies” don’t even know that they are being aggressive or rude, and just need some education on their behavior; it is important to treat even minor events as learning opportunities rather than ignore them.
Openly talk about values, advocacy, and diversity.
Highlight what values we should all have as people, such as compassion, respect, understanding, and kindness. Help older students reflect on what values are important to them and how these values serve everyone. Inspire early advocacy by discussing why representation matters and how to stand up for others.
Support conversations about identity and self-image.
It’s never too late to include the message that all bodies are good bodies, and this may be especially valuable in adolescent years.
Books
Bodies Are Cool by Tyler Feder
This inclusive picture book celebrates the incredible diversity of human bodies, including differences in size, shape, and ability. It encourages young readers to embrace body acceptance and confidence. “My body, your body, every different kind of body! All of them are good bodies! BODIES ARE COOL!”
Jason’s First Day or Emily’s First Day by Valerie Busic
These books are designed for preschool and school-age children who are wheelchairs users or move differently. They provide relatable stories for children with disabilities and serve as a helpful resource for teachers to foster understanding and communication among classmates.
Not So Tall for Six by Dianna Hutts Aston and Frank Dormer
Kylie is the smallest in her class and although this comes with unique challenges, she navigates them with resilience. When faced with a class bully, she demonstrates courage and self-advocacy, highlighting the strength in differences.
Not Too Big… Not Too Small… Just Right for Me by Jim and Darlene Korpai
Written by parents of a child with dwarfism, this book uses child-friendly language to celebrate individual differences and educate readers about dwarfism, encouraging acceptance and self-confidence in all children.
You’ll Grow Soon, Alex by Andrea Shack and Russel Ayto
Alex worries about being smaller than everyone else and seeks advice on how to grow taller. Over time, he learns that happiness and self-worth are not about size. This book promotes a message of self-acceptance and valuing oneself as they are.