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Down Syndrome Awareness Day: March 21st

Mar 16th, 2020 | by Cait Parr, PT, DPT
Cait Parr, PT, DPT

Cait Parr, PT, DPT

March 16th, 2020

March 21st is World Down Syndrome Day, a day to celebrate and spread global awareness.

What We Wish the World Knew About Down Syndrome

Celebrate World Down Syndrome Day March 21st, 2020!

In honor of Down Syndrome Awareness Day, we would like to share with you how we at NAPA see our friends with Down syndrome. Up until as recently as the 1980s, it was unfortunately the norm to institutionalize individuals with Down syndrome. Thankfully, times and perspectives are changing. Today, people are now identifying the uniqueness and potential of people with Down syndrome that we have known all along. Popping up globally in ads, some of these special individuals have begun to model for big companies. It’s apparent we are growing as a society in understanding that different is beautiful. But really, we think that different is the most beautiful.   

Strike a Pose for Down Syndrome Awareness Day 

Modeling is absolutely not the only thing our people with Down syndrome can do! It’s important to recognize, many children go on to live both happy and fulfilling lives. Adults with Down syndrome are now reaching old age on a more regular basis and are commonly living into their 50s, 60s and 70s. With the right support, they can build rich lives and play an important role in their communities. Many adults live nearly on their own, have jobs, and relationships. Of course, those with Down Syndrome have a range of needs, abilities, and desires, just like any other group of people. While some will learn to drive, others will work on building relationships. Some can live on their own, while others will need more assistance. They are quite capable of working a part-time job and participating in meaningful social activities.  

What to Expect When You Are Expecting 

Down Syndrome Awareness Day is March 21st, also known as World Down Syndrome Day.As international discussion over prenatal testing for Down syndrome grew, researchers noted one perspective was noticeably absent from the research literature—the voices of people with Down syndrome themselves! In a 2011 study, 296 people with DS shared about their lives and, for the first time, revealed their advice for expectant couples. Their views and responses were collectively and systematically analyzed. The overwhelming majority of people with Down Syndrome surveyed indicated they live happy and fulfilling lives. When asked, “if a new mom and dad just had a baby with Down syndrome, what would you like to tell them?”, many people with DS wanted to express that their own lives are good, saying “It’s not so bad having Down syndrome” and “If everyone was as happy as me, that would be great.” One individual with Down syndrome shared, “I am very happy in my life. I have friends who care about and love me.” Several others wanted to say, “It’s okay to have special needs.” The general sentiment towards the new parents was that they need not worry:

“Don’t be afraid. Your baby will have a wonderful life.”  

 

Patience was of particular importance to the interview participants with Down syndrome, who stated, “The baby has to work hard. Help the baby reach their goals.” and “Be patient because I found out that it is harder for me to learn.” Many participants also highlighted similarities between people with DS to those without DS, saying “The baby is just like you and me, just a little different.” and “That baby is not different from a regular person just because they have a disability.” We love what these individuals had to say about love: “Love them, and they will love you lots.”

“If you love the baby with all your heart, that is what really matters.”

 

 NAPA Strives to: 

  • Provide education and support to families and caregivers of children with Down syndrome
  • Walk with families and caregivers of children with Down syndrome through the medical issues commonly encountered by the population
  • Empower children with Down syndrome and their families and caregivers with accurate information so that they can take positive action over the course of the lifespan of individuals with Down syndrome
  • Raise awareness and provide an advocacy framework for medical and psychosocial needs commonly encountered by individuals affected by Down syndrome  

Get Connected! 

Instagram is a great way to connect with some of our favorite friends with Down syndrome. Here are some of our favorite accounts to follow:

  • @happysoulproject
  • @nothingdownaboutit 
  • @mckeonkay – first capitol hill lobbyist with DS Kayla McKeon 
  • @zacharygottsagen – Peanut Butter Falcon movie star Zach Gottsagen 

Still Want to Know More?  

About the Author 

Cait Parr is a pediatric physical therapist at NAPA Center. Her favorite animal is snails, because they remind her to slow down and enjoy the beautiful details about life. 

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