During October, Down Syndrome Awareness Month initiatives help to shine a light on what we can do to celebrate and better support children and adults living with Down syndrome.
Every year, about 6,000 babies – one out of 700 – are born with Down syndrome in the United States. Most of these children grow up to thrive as adults. They attend school, join the workforce and contribute to their communities. But living with this lifelong condition is a long, expensive and arduous journey. It can also be a painful one – both physically and emotionally. It takes time, patience, compassion, resources and understanding as well as support from within the communities where these children live.
That’s one reason why Down Syndrome Awareness Month is so important. Spreading awareness about the reality of life with Down syndrome is the best way to educate people so they can offer that support in the most impactful ways.
Three types of Down syndrome
There are three types of Down syndrome, all of which are defined as chromosomal conditions: Trisomy 21, Translocation Down syndrome and Mosaic Down syndrome.
Trisomy 21 is the most widely known type of Down syndrome. It’s the type that 95% of people with Down syndrome have. Also, women in the U.S. usually opt to be tested for Trisomy 21 during pregnancy, as those tests are informative, yet non-invasive.
In Trisomy 21, each cell in the body has 3 separate copies of chromosome 21 instead of 2 copies. There is a small percentage of people who have Translocation Down syndrome that occurs when “an extra part or a whole extra chromosome 21 is present, but it is attached or ‘trans-located’ to a different chromosome rather than being a separate chromosome 21.” In Mosaic Down syndrome is the rarest form and can vary from child to child. Those born with this condition may have 3 copies of chromosome 21, “but other cells have the typical two copies of chromosome 21. Children with mosaic Down syndrome may have fewer features of the condition due to the presence of some (or many) cells with a typical number of chromosomes.”
Health concerns and pain issues
Some people with Down syndrome are born with birth defects or an increased risk for different types of medical conditions. The scariest and most common health risk is heart defects that are present at birth. Other common medical issues include hearing loss, obstructive sleep apnea, ear infections, eye diseases, poor muscle tone and intellectual delays.
Similar to sensory processing issues for autistic children, many people with Down syndrome have sensory pain issues. This means they can be overly sensitive to the slightest pain or they are not sensitive enough to their body’s pain messages. It may not sound like a big deal, but it is indeed cause for concern since it can pose uncertain risks.
Speaking from experience, my autistic son has a very high tolerance for pain. I remember when he was little and had a cold. I asked him several times if anything hurt, and every time he said no. When his temperature spiked, I took him to his pediatrician and she advised that he had a bad ear infection that must be very painful. My heart broke. That’s when I realized I had to be even more vigilant about his health and take more safety measures to make sure his environment was even safer.
Focusing on abilities, not limitations
Close to 20% of people with disabilities were employed in 2017, but that data combines all disabilities into one category. Thus, there is no data on how people in the workforce have Down syndrome. The National Down Syndrome Society – among other organizations – work diligently to raise awareness for the value of those with Down syndrome in the workforce and to match them with employers. It’s important for us all to focus on the abilities and strong suits of those with Down syndrome, not on their limitations.
Kris Mill, owner of vegetarian food truck Wok This Way, recently spoke out about the importance of recognizing these abilities. She brought in aspiring chefs who have Down syndrome for a cooking class to help them kickstart their careers. With her empowerment through employment initiative, she hopes other business owners will move beyond believing those with Down syndrome “work in limited facets and in small capacities” and instead focus on what they can bring to businesses.
Kayla McKeon, a lobbyist in Washington D.C. who lives with Down syndrome, advocate for others with disabilities and made history as the first person with the condition to be a lobbyist in D.C. Her work centers around ensuring people who are differently abled are treated fairly. Her first success came in December 2017 “when a bill passed that allowed people with disabilities to save more money. In the past, an individual’s savings could disqualify them from receiving Medicaid benefits.”
Being the mom of a child with special needs
The path my family is navigating in life is not exactly the same as families of those with Down syndrome, but there are similarities. My oldest son was diagnosed with autism in 2007 – something that forever changed our lives. When he was diagnosed, I battled dark days as a new, young mother with a special needs child. I battled a combination of confusion, isolation, hopelessness, sadness and anxiety.
Looking back, awareness was one of the things that eased our pain and helped us unite in strength. It’s what gave us the strength to power forward for our son. Our family, friends and neighbors were educating themselves, and when they asked me questions about autism, that dialogue mattered. Even if I didn’t have the answers – which I usually didn’t! – sharing those conversations was part of the cycle of upward change.
Compassion changes lives
When it comes to my son’s day-to-day life now, he’s accepted and understood by his peers, neighbors and even total strangers. It improves with every passing day. Awareness grows with every conversation – both public and private. It’s not all unicorns, glitter and rainbows, but there is plenty of hope for the future.
Like autism, most people know someone who is living with or has been impacted by Down syndrome. If we can all relate to what that’s like and find it within ourselves to offer support and encouragement, everyone benefits. Parents of special needs children know that the smallest gesture of kindness, encouragement or acceptance can literally transform day-to-day experiences and can change lives.
Providing positive support
There are lots of ways to get involved during Down Syndrome Awareness Month. Check out 21 different ideas here. And remember: you can get involved with awareness all year long by providing support to family, friends and communities that give people with Down syndrome the best opportunity to lead happy and meaningful lives.
How have you promoted awareness in your community for Down Syndrome Awareness Month? Let us know in the comments section.
What topics related to Down syndrome would you like to see us research?
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