{"id":4966,"date":"2025-10-27T18:09:37","date_gmt":"2025-10-27T18:09:37","guid":{"rendered":"https:\/\/blog.geneticsupportfoundation.org\/?p=4966"},"modified":"2025-10-27T18:30:07","modified_gmt":"2025-10-27T18:30:07","slug":"dwarfism-and-your-family-a-conversation-guide","status":"publish","type":"post","link":"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2025\/10\/27\/dwarfism-and-your-family-a-conversation-guide\/","title":{"rendered":"Dwarfism and Your Family: A Conversation Guide"},"content":{"rendered":"\n

Contributing authors: Andrea Schelhaas, Cruzanne Macalligan, and Colleen Gioffreda<\/em><\/h3>\n\n\n\n

When you learn your child has dwarfism, it\u2019s natural to have many questions. That curiosity is a great thing – it\u2019s part of how we learn and grow as parents. The good news is you\u2019re 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. <\/p>\n\n\n\n

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.<\/p>\n\n\n\n

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!<\/em><\/strong><\/p>\n\n\n\n

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We just received a dwarfism diagnosis for our child; how do we tell our friends and family?<\/em><\/strong><\/h1>\n\n\n\n

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\u2019s diagnosis. Many people will be understanding and supportive. Others might not understand right away – and that\u2019s okay. Your responsibility is to your child. <\/p>\n\n\n\n

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:<\/p>\n\n\n\n

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\u201cWe just learned that [name] has dwarfism. We have a lot of questions, too, and we\u2019re excited to learn more with your support.\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

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:<\/p>\n\n\n\n

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\u201cI 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.\u201d <\/em><\/p>\n\n\n\n

\u201cWe 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!\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

Set your family values, early.<\/strong><\/h2>\n\n\n\n

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.<\/p>\n\n\n\n

When will other people notice that my child has dwarfism?<\/em><\/h4>\n\n\n\n

When your child is very young, many people may not notice a difference. Some days you may feel like sharing your child\u2019s 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!)<\/p>\n\n\n\n

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\u2019s immediate world, which includes siblings, other family members, friends, teachers, neighbors and certain community members.<\/p>\n\n\n\n

What do I do when people start to notice their differences?<\/em><\/h4>\n\n\n\n

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\u2019s 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.<\/p>\n\n\n\n

Smile first.<\/strong><\/h2>\n\n\n\n

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 \u2013 it\u2019s 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.<\/p>\n\n\n\n

Use language you are comfortable with.<\/strong><\/h2>\n\n\n\n

Most people with dwarfism or skeletal dysplasia are comfortable with the terms \u201cshort-stature,\u201d \u201clittle person,\u201d or \u201cdwarf.\u201d Using these terms in person-first language is often preferred (as in \u201che is a person with dwarfism\u201d or \u201che has dwarfism\u201d instead of a defining or declarative statement such as \u201che is a dwarf\u201d).

Examples of things you might say to a stranger who notices your child\u2019s differences:<\/p>\n\n\n\n

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\u201cMy child is a little person.\u201d<\/em><\/p>\n\n\n\n

\u201cI can see you\u2019ve noticed my child is different. They have dwarfism.\u201d<\/em><\/p>\n\n\n\n

\u201cMy child has dwarfism – that means that as an adult, they will have short stature.\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

*Please note that the word \u2018midget\u2019 is considered a derogatory slur and highly offensive to the dwarfism community.*<\/em><\/p>\n\n\n\n

Embrace that all children have things in common.<\/strong><\/h2>\n\n\n\n

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.

<\/em>Depending on your child\u2019s age, this could look like:<\/p>\n\n\n\n

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\u201cMy child has dwarfism. Their name is [NAME], and right now they are getting into everything and their favorite food is bananas!\u201d<\/em><\/p>\n\n\n\n

\u201cMy child is a little person. This sure hasn\u2019t slowed them down \u2013 we spent all morning at the park! Isn\u2019t it a beautiful day to be outside?\u201d<\/em><\/p>\n\n\n\n

\u201cI 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 \u2013 Taylor Swift is on repeat in our house!\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

Remember there\u2019s no such thing as \u2018normal.\u2019<\/strong><\/h2>\n\n\n\n

It can be common to refer to non-disabled people as \u201cnormal.\u201d But in reality, there\u2019s no such thing as \u2018normal\u2019 – humans come in all shapes and sizes and every one of us is unique! Instead of \u2018normal,\u201d try using words like \u2018average\u2019 or \u2018typical\u2019; you may have a child with dwarfism, and they may have \u2018average-height\u2019 siblings.<\/p>\n\n\n\n

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\u201cI am average-height; my daughter has dwarfism. Her brother is also average-height.\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

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\u2019s name to address them, rather than their diagnosis!<\/p>\n\n\n\n

Be a champion for how all bodies are cool.<\/strong><\/h2>\n\n\n\n

Since the dawn of time, about 117 BILLION people have lived. That\u2019s 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.<\/p>\n\n\n\n

For example:<\/p>\n\n\n\n

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\u201cSome bodies are big, some bodies are small. Some bodies are fast, some bodies are slow. All bodies are cool!\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

This message can help all of us – children and adults – to embrace our bodies and celebrate human diversity.<\/p>\n\n\n\n

Check in with your child as they get older.<\/strong><\/h2>\n\n\n\n

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. <\/p>\n\n\n\n

You may say:<\/p>\n\n\n\n

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\u201cYou do not have to answer questions about your body. You can be kind and polite, but it\u2019s always okay to say no.\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

Teach your child phrases like:<\/p>\n\n\n\n

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\u201cThat\u2019s kind of a personal question.\u201d <\/em><\/p>\n\n\n\n

\u201cI\u2019d rather not answer, thanks for understanding.\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

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:<\/p>\n\n\n\n

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Child: \u201cWhy are they staring at me?\u201d<\/em><\/p>\n\n\n\n

You: \u201cI don\u2019t think they\u2019ve ever seen a little person before \u2013 imagine that!\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

If someone says something unkind, you may say:<\/p>\n\n\n\n

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\u201cIt seems like that person has never learned to be kind. They must be very unhappy. It\u2019s sad that they haven\u2019t learned that all bodies are cool.\u201d<\/em><\/p>\n<\/blockquote>\n\n\n\n

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Why Sibling Conversations Matter<\/strong><\/h1>\n\n\n\n

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:<\/p>\n\n\n\n