October is home to many holidays, celebration and awareness themes. It wasn’t until almost two years ago that a new theme became very special to me: Down Syndrome awareness.
Down Syndrome, or Trisomy 21, is a genetic condition where you’re born with an extra chromosome.
When someone is born with an extra chromosome 21, they face difficulties in muscle tone, speech and communication, intellectual development and attain physical traits that make them easily identifiable as one with Down Syndrome.
There are two main forms of Down Syndrome. Trisomy 21 is the most common where every single cell and chromosome have an extra chromosome 21 attached to it. Mosaic Down Syndrome is where the extra chromosome 21 is scattered throughout the cell and is attached to random locations.
As for child development, there is a lot of physical therapy, behavioral training and speech therapy that go into the child’s proper growth. Not every parent is equipped with being able to afford or put in the time needed for someone with Down Syndrome to be just as “successful” as everybody else.
There are a lot of misconceptions that people with Down Syndrome can’t be successful business entrepreneurs or athletes or true artists. However, more recently, there are movies starring actors and characters with Down Syndrome, models with Down Syndrome who are making a stance for those who haven’t gotten a chance to and people like me who have been thrown into a community they never knew they were going to be a part of and are now spreading awareness to those around them.
The movie Where Hope Grows, released in 2014, is about an unlikely friendship between a drunk, failing father and a grocery clerk. Cal and “Produce” grow together and defy society’s stereotypes, making a positive change in both their lives. Another movie is one I watched last winter with my family. Peanut Butter Falcon was released last year in 2019. This movie is again about an unlikely friendship that is created when hospital run-away Zak and roughian Tyler bump into one another and begin a cross-country trip to help Zak meet his pro-wrestling heroes… while being chased down by some healthy arch nemesis.
These movies are comedic, emotional and don’t negatively typecast actors with Down Syndrome. My hope is to be able to see many more of these within the next ten years.
As a college student, you have many stressors and things to focus on. Outside of the balance of homework, a social life, adjusting to a new location in college culture, worrying about what you’re actually going to do after your undergraduate degree and possible reasons why waking up for your 8a.m. is just not going to happen… you never think to expect another head turning curveball. Not until you’re about to start your sophomore year of college and your mother tells you you’re about to be a big sister again. No, that’s not usually something that comes to mind when you’re listing college expectations.
A few months into my second year here, I received a call before having to sit through an Equinox e-board meeting. My mother had been told that the baby had a really good chance of having Down Syndrome. And there was no way of telling where he’d be on the spectrum or what would happen once he was born. Imagine having to sit through an e-board meeting knowing your mother is emotionally distraught and scared.
My mother, sister and I became introduced to a new community, one full of mothers and fathers who all had the same questions and concerns. All these parents are not being hateful towards they’re growing baby, but they are being influenced by society to believe that “different” is wrong. They are scared because they are told it is their fault and there is nothing to do and no one who can “fix” it.
I began doing multiple projects with the Down Syndrome community and even wrote an opinion piece on the new Gerber Baby who had Down Syndrome that year. Anxieties rose high, but as soon as he was born that March, they changed.
It was no longer, “what’s going to happen to us?” It was more, “what’s going to happen to him?” How are people going to react to him? How is he going to make friends? Is he going to develop physically and intellectually at the speed he needs to in order to have a normal childhood? What is a normal childhood? What do we need to do to ensure his safety and proper growth?”
I later found out that these questions are asked by every single family that goes through the initial shock and fear of having a child with Down Syndrome.
During my multimedia project my sophomore year, I interviewed many parents. One reflected on how he never used to notice when there were children or adults with Down Syndrome. He said all he could remember is all of the hate and bullying they would receive. The thing is, as humans we only see what we really look for. We only see what we want to see until our reality and focus is broken. Unfortunately, what the average person sees is someone like my baby brother who’s trying to communicate or is restless and being a little loud, and the average person gets angry and frustrated over it.
I’m not saying people shouldn’t have these frustrations. I’m sure I would be frustrated if I was trying to read in the library and someone was being extremely loud and distracting. The difference is once you’re forced into a community you didn’t have any time to really prepare for, you start seeing the world differently and very rapidly. You start to notice how many people are on the spectrum and you get really excited just seeing someone walk down the street that may have an acute form of Down Syndrome. You get excited to see other children, adults and people who are supporting this community because now… it’s your community.
You get a chance to change the view of those around you (it also helps if the one you’re trying to introduce people to is the cutest little baby… Because who doesn’t love babies?).
You get a chance to meet some of the most caring, funny, talented and important people. And that is all I can ask for from Down Syndrome awareness month.
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