This is a guest post from my sister, Lynn, about my adorable nephew, Charlie.
Meet my son Charlie. He is a cheerful, smart, handsome 7 month old – an overall great guy. On the day that he was born, Charlie was diagnosed with achondroplasia, the most common form of dwarfism. As his mother, one of my greatest fears is how he will be treated, by a sometimes unkind world, simply because of his stature. You see, Charlie is like most other 7 months old, only a bit shorter. (Note from Aunt Amy: Charlie is actually one of the sweetest and most joyful babies I’ve ever encountered.)
Prior to my son’s diagnosis, I knew almost nothing about dwarfism. I had seen the occasional TV show – some exploitative and some not. Though I had sometimes seen Little People (LP) out in the community, I have never actually had a conversation with an LP. When I learned about Charlie’s diagnosis, I initially struggled with our new reality. Though it was certainly an unrealistic expectation, I imagined having an easier time with a second child. Suddenly, I had a baby with a genetic condition about which I knew very little. I was concerned about the possible medical complications associated with achondroplasia. I worried that Charlie’s potential would be greatly limited by his stature. I wondered about how he would be received by the world that still feels free to openly mock Little People. Before even leaving the hospital with my new baby, I was lucky enough to be connected with the Little People of America. This amazing organization provides a variety of services to Little People and their families. I have connected with many people through our local district and around the country. They are a source of support, resources, and social connection.
The last seven months have not always been easy but Charlie is an amazing guy. He is sweet, social, and charming. He is a great addition to our family. He has introduced me to a world of amazing people – LP’s, parents of LP’s, and families of children with medical special needs. I have learned more than I ever could have imagined. As an advocate for Charlie, I believe that it is important to share some of this information with others.
Here are some basic facts about dwarfism:
- Charlie’s form of dwarfism, achondroplasia, is the most common. However, there are over 200 different types of dwarfism with an estimated 30,000 Little People in the United States and 651,700 LP’s in the world.
- 80% of Little People are born to average sized parents. Most often, dwarfism is the result of a spontaneous genetic mutation. My husband and I are both average height. Neither of us have any family history of dwarfism. One set of Charlie’s genes are now altered and carry the mutation for achondroplasia. Should he choose to have children with an average height partner, there is a 25% chance that each child will have achondroplasia. If his partner also has achondroplasia, the chances increase to 50%.
- People with dwarfism are usually no taller than 4 foot 10 inches. The average height of a man with achondroplasia is 4 foot 4 inches. The average height of a woman with achondroplasia is 4 foot 1 inch. People with achondroplasia have an average-sized torso, a larger than average-sized head, and shorter than average arms and legs.
- The word “midget” (often referred to as the “m” word) is considered highly offensive. The term was used to describe LP’s who were put on display in sideshow acts.
- Most types of dwarfism have medical complications, some more severe than others. Charlie has severe obstructive sleep apnea (OSA). He was oxygen dependent since he was three weeks old. Just last month, my husband and I made the difficult decision for Charlie to have a tracheotomy. This immediately eliminated his OSA. Learning to care for an infant with a trach has been a bit overwhelming but we are all literally sleeping easier.
- Dwarfism occurs in all races and ethnicities.
- Such terms as Little People, LP, Person of short stature or Person with a form of dwarfism are all acceptable. Most people with dwarfism see the word “dwarf” as acceptable. Most people would rather be referred to by their name than by a label. When he is older, Charlie will decide what language he prefers. For now, we refer to him as a Little Person.
- In the dwarfism community the word “average” is used instead of the word “normal.” Example: “Average sized parents” rather than “normal sized parents”.
- Dwarfism is not a reason to assume that someone is incapable. Little People can do just about anything an average sized person can, just sometimes in a different way. Charlie will live in an averaged-sized world. My husband and I will make some accommodations at home and in school. Beyond those, we will encourage Charlie to try anything he would like to do and be resourceful to make it happen.
- Dwarfism is not an intellectual disability. A person who has dwarfism is typically of average intelligence.
October is Dwarfism Awareness Month
Sometime this month, please take a moment to educate yourself and make the world a kinder place for Charlie and all Little People. Here are some fantastic resources to learn more:
When I first learned about Charlie’s diagnosis, I did a little research, since, like Lynn, I was not
particularly at all knowledgeable about achondroplasia. I was relieved to learn that Little People have average lifespans and no intellectual limitations. The only differences are physical. At the same time, I was concerned that people could be unkind to Charlie, because somehow a social acceptance of making fun of Little People seems to persist. Please share the information in this post with others, and help ensure that Charlie and all Little People receive the love and respect we all deserve. Many thanks!!