Not that long ago, I learned that October is Dwarfism Awareness Month. This isn’t something I hadn’t been aware of before the birth of nephew, Charlie, about 19 months ago. I shared an interview with my sister, Charlie’s mom, last October, and I’m checking back in with her here:
How is Charlie Doing Now?
Charlie is 19 months old. He’s cheerful, social, and easygoing, and enjoys making people laugh with silly toddler humor. To be honest, he has become quite a ham. Despite his lack of spoken language, he is very vocal and effectively communicates what he wants and needs. In the last year, Charlie has checked several developmental milestones off of the list. Because his body mechanics are somewhat different, his developmental milestones came on a different timeline than many average height kids. He started crawling at ten months. Like many kids with achondroplasia, he does not do the typical four point crawl. Instead, he does the army crawl using his arms to pull the rest of his body. Charlie sat up without support at 13 months. This is a major milestone for all kids but especially those with achondroplasia. He pulled to a stand a few days after achieving unsupported sitting. At 16 months, Charlie began using a toy walker to get around, and became very interested in keeping up with his brother and the kids in the neighborhood. This desire was very motivating for him to improve his walking and increase his speed with the walker. Though he isn’t quite walking independently (but he has taken a few steps!), he zooms around the house and all over the neighborhood with his walker.
Does Charlie Still Have a Trach?
Charlie has had his trach for 13 months, and he’s doing very well with it. He has no difficulties with breathing and is generally unfazed by his trach. More recently, he has entered into the predictable toddler phase of threatening to pull the trach out (and sometimes actually doing so). We manage it like any other undesirable toddler behavior. Adjusting to caring for a child with a trach was very challenging at first. The learning curve is steep in the first few months at home. In his first winter with the trach, Charlie was sick for the better part of six months. It was exhausting but we learned a lot about caring for his medical needs in a variety of situations. We’ve also learned a great deal about navigating a variety of systems including doctors/hospitals, insurance, and home care nursing agencies. Because caring for a child with a trach requires knowledge of an uncommon set of skills, Charlie cannot be left with a babysitter. Instead, he can only be left with nurses who are familiar with trachs. While we are so grateful to have good nurses who help care for him, having other caregivers regularly in our home comes with a whole other set of challenges.
The trach has caused Charlie to have delays in speech development. Because the trach prevents air from passing through the vocal cords, it is hard for him to make sounds. We are currently working, with a speech pathologist, on developing some spoken language. In the meantime, Charlie uses American Sign Language to communicate. He picks it up quickly and is only limited by the adults around him who are slower to learn. One year in, I think we have all adapted fairly well but are looking forward to a time when he does not needs his trach. His doctors expect that it will be removed next summer.
As Charlie’s Primary Caregiver, How Have You Evolved in the Past Year?
In the time since Charlie was born, I have changed a great deal. One of the most significant changes has been my increased adaptability. While some may argue that I still have a ways to go (my husband may want to chime in here…), the last 19 months have taught me how to roll with things more easily. No parent expects to have a child with any special needs. There is a degree of shock and grief that is associated with the shift from one’s (arguably unrealistic) expectations. I certainly experienced this when Charlie was diagnosed with achondroplasia, as well as when he got the trach. There is typically a period of time that I may feel shocked by unexpected changes, but then I find my footing and move forward.
Another big change has been a shift to being more outgoing. I am an inherently introverted person. Our current life does not allow for much time alone. Besides having two small children, (which eliminates all alone time for any parents), we have a parade of providers and caregivers through our home each week. Though this can be hard for me, I am beyond grateful for the village that our family has created. I am also more outgoing with strangers and acquaintances. It is amazing how motivated I am to reach out and talk to strangers to make sure the kids get what they need. These days, I’ll talk to anybody if I think I will learn something helpful or make a useful connection. We just learned that Charlie will need glasses, and in the last few days, I have approached several people with small children wearing glasses, to inquire about their child’s opticians.
How Is the Rest of the Family Doing?
The transition from a family of three to a family of four was not the smoothest for us. My older son, Ben, did not readily embrace being an older brother. The fact that Charlie had medical special needs that required so much more attention did not make the transition any easier. Given that Ben had such difficulty adjusting to having a baby brother, my husband and I waited a while before sharing the information that Charlie is a Little Person. At the time, our thinking was that we wanted Charlie to be treated just like everybody else. We did not want to make the fact that he is an LP into a “thing” by making a big announcement. Then, Charlie’s trach required so much of our attention, we just didn’t think about sharing this information with Ben. After Charlie turned one, it began to occur to me that we needed to start talking more openly, with Ben, about Charlie being an LP. I used Ben’s questions about my upcoming lunch date with a mother of another child of an LP as an opening to share this news with him. Our family had been lucky enough to have an amazing babysitter who is an LP. Ben loves her. When I told him that Charlie is an LP like her, he was briefly surprised but was generally unfazed. When I brought the topic up the next day, he asked if this was why Charlie was smaller than other kids his age. From that point forward, our family has comfortably talked about Charlie being an LP. In September, Ben attended his first LPA social event and had a great time.
Since the spring of this year, Ben has come very far in embracing his big brother role. As he told my niece when she asked if he wanted a baby brother, “In the beginning, yes. In the middle, I was like no way! Now, yes”.
What Have You Learned about Dwarfism in the Past Year?
I have become more tuned into the varying opinions, within the LP community, about whether or not dwarfism is a disability. Not surprisingly, there are a wide range of opinions. Some LP’s do not wish to be seen as disabled. Rather, they wish to focus on the ability to do all of the same things as average height peoplee, but in a different way. Others identify strongly with being disabled and see it as a core part of who they are. As Charlie’s parent, I think that it is important to develop my own viewpoint on this, as I will have a role in shaping how he views himself.
I have also become much more aware of my own ableist attitudes and language. The world is built for able-bodied individuals. Those of us living without disabilities move ignorantly through the world often, with little or no awareness about the experience of people with disabilities.
What Would You Like Others to Know About Dwarfism?
Check your prejudices. Somehow, it is easy for us to forget the personness of individuals we mock. My heart breaks when I think of the first time that Charlie is made fun of for being a Little Person. Charlie is more similar to the rest of us than he is different. I hope that people remember this about all Little People – and really anybody with differences.