Police Cars, Crisscrossed Standoffs and Sock-Stealing Elves: How Down Syndrome and My Brother Justin Inspired Me to Change the World
Justin is my little brother and my favorite human being. He’s 24 years old and he loves Elvis, the Beatles, bowling, and the TV show Glee. Every time I talk to him he tells me — in detail — the plot of latest episode he’s watched (he’s seen all six seasons innumerable times). He wants to be an actor and musician someday but, for now, he interns at a local theater.
He just finished two years of study at UCLA and is a proud Bruin. He lives in an apartment with a roommate and he spends his days working, cooking for himself, and watching TV. Oh yeah, and Justin has Down syndrome.
He has one extra chromosome and it makes him see the world a little differently. He has also helped me to see the world differently and I know that it will help me to be a better physician.
Down syndrome was originally known as Mongolism and was first described in 1866 by British physician John Langdon Down. It is a chromosomal abnormality that causes delayed mental development, along with a myriad of health issues including heart defects, ear and airway issues, Alzheimer's disease, childhood leukemia and thyroid conditions. These conditions, along with the early institutionalization of infants with Down syndrome as late as 1960, led to a very short lifespan of 9 years in 1929. That span increased to 25 years by 1979. Today, people with Down syndrome have an average lifespan of 60 years and have been found to be increasingly capable of living independently.
Growing up with Justin was a unique experience. Although I am just a year-and-a-half older than him, I was thrust into the caretaker role very early.
Justin is usually happy and sweet, easy to laugh and always making jokes that are only funny to him. But his laughter is infectious.
He was an adorable, round ball of a child and, for a long time, was more comfortable bear crawling than walking. He could bear crawl as fast as most kids could run and he loved to chase me around the house.
He was the most stubborn child I have ever known. When he didn’t feel like doing something he would sit, crisscross applesauce, wherever he happened to be. And no one could move him.
This happened everywhere. In movie theaters, theme parks, at concerts and in churches, Justin would sit. Thankfully, as his older sister, I knew all of his tells. I could get him to do things when my parents couldn’t, like play in his soccer game instead of sitting in the middle of the field or leave the TV behind to eat dinner with the family.
People sometimes have a hard time understanding what my brother says, but it was worse as a child before speech therapy, and I often acted as an interpreter. He constantly engages in self-talk — a very common behavior in Down syndrome — where he talks himself through events or just to keep himself company. This occasionally led him to be the target of bullies in school, which was very upsetting for Justin.
When he started high school, he told us that he could fool everyone into not knowing he was different and he often talked about growing out of his Down syndrome so that no one could make fun of him.
It broke my heart to hear him say things like that, but throughout everything, he almost never got angry and he never held a grudge.
There were occasions, however, when just how deeply you upset him revealed itself in the form of something important of yours disappearing.
Once, my father took away TV privileges from Justin. The next day, he found himself missing an entire drawer of socks. Justin insisted that the house elf had taken them. Maybe if he got his TV privileges back, he explained, they would be returned.
He loves pulling pranks on people. His Down syndrome makes him prone to wondering, which often had my mother at her wits end. I can’t say how many times the police came to meet us with my brother in tow. I even lost him two years ago when I took him hiking. He thought it would be funny to secretly turn around and go sit by the car waiting for me instead of taking a walk. I ran around panicking for an hour before I found him.
He still finds that story hilarious.
Because of his conditions, Justin got sick a lot more than the average kid and was forever in the doctor’s office or having some procedure done. One physician didn’t believe Justin needed anesthesia because of his condition and five people had to hold a six year old down as he screamed and struggled. To this day, my mom feels guilty for failing to demand anesthesia.
She has been a fantastic advocate for my brother, even becoming a special education teacher to work with other kids. My parents were forced to sue our school board once when we were young so that Justin could have the option of full inclusion rather than being forced into special education, and that has made all the difference in his life.
He had a one-on-one aide to adapt his classwork for him, but being fully included taught him how to behave and made him work harder in school. Because of the way my parents raised him, Justin believed himself capable of moving away to college and then living on his own. He attended a special program for people with developmental disabilities to learn independent living skills.
I have learned a lot from my brother over the years. He sees the best in people. To Justin, everyone is worth talking to and learning from.
He finds happiness in his everyday experiences, appreciating every food he eats and every person he meets. While some people have told me that they see people like Justin as a drain on society, I am convinced that we all can learn from him and others like him.
My brother inspires me every day to live in the present. He has taught me patience.
As a future doctor, my experience growing up with Justin has shown me the importance of advocating for those who are often misunderstood or ignored. Every patient matters. Everyone feels pain. Everyone longs to be understood, even if they can’t effectively communicate.
Thanks to Justin, I know that I have a greater chance of connecting with and truly understanding my patients.
Thanks to Justin, I have a greater chance of making a real difference in the lives of my patients.
Thanks to my brother Justin, a kid with Downs Syndrome, I have a greater chance of changing the world for the better.
Osteopathic Medical Student - 2nd Year (OMS II)
Student American Academy of Osteopathy, Chapter President
Pediatrics Club, National Liaison
Health Equity Club, Secretary
Spanish Club, Secretary
College of Osteopathic Medicine
Pacific Northwest University of Health Sciences