What it's like to grow up with a brother who has Down Syndrome

March 21 is World Down Syndrome Day! It’s a day we celebrate people with Down Syndrome and participate in activities to advocate for their rights, inclusion, and well-being. After having my brother in my life for 25 years, I sit here pondering why we even have to advocate for the “rights, inclusion, and well-being” of those with Down Syndrome in the first place. What is it that makes us believe they shouldn’t have the same rights or inclusion as others? You see, for me, growing up with a brother who has Down Syndrome was normal. After all, he was born when I was just 2 years old and he is the very first memory I ever had - Thank you for the best first memory, Jesse! Despite life being a little different when he first entered into the world, life with him wasn’t much different in the sense of what another family might have been experiencing. After all, every family has differing quirks, issues, and personalities. Jesse just brought his own to our kitchen table where we gathered together to be a family. It’s the story of our family and I wouldn’t change it for the world. ❤️

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“The most important fact to know about individuals with Down Syndrome is that they are more like others than they are different.” - National Association for Down Syndrome

So, what was it like growing up with Jesse? It was richer and more beautiful. I remember anxiously awaiting my new sibling’s arrival. I could hardly wait! When the day finally came, we learned Jesse had Down Syndrome and I remember being so proud of my new baby brother! I also remember the almost unbearable longing to hold him. You see, I had a bad cold the day he arrived (darn it!) and he had a fragile immune system entering into this world. Even-though he ended up being hospitalized for a month (he was a month early and had jaundice), I eventually got to go see him for the first time. I remember excitedly sticking my small hand through the clear holes of the incubator - never once did I even see “Down Syndrome”. I saw my beautiful baby brother! It was normal, just life.

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Jesse was born with usual characteristics of Down Syndrome - low muscle tone, a heart murmur, lower cognitive functioning - but those things haven’t seemed to phase him! Historically he has been healthier than any of his siblings, including me! I remember having an in-home therapy provider come each week where I would participate in therapy with him, so I could help him when the therapist left. I also remember him learning to walk! Jesse was 4 years old and had been using a miniature walker for support. At 1 year old, my next oldest brother, Skyler, would sometimes use it too. One day, Skyler let go of the walker and started to walk, and soon after, Jesse let go and decided to try it for himself too! What a happy day that was!

I remember introducing Jesse to my friends on the playground when he started going to school to prepare for kindergarten. I was so proud and excited about having a little brother, that I looked past Jesse’s “disability” and helped my friends welcome and enjoy his presence. I saw Jesse as someone with amazing “other abilities” and my enthusiasm and love for him quickly spread to my friends. Soon the whole school knew Jesse and he wasn’t even in kindergarten yet! (simply because of who he is - he’s so likable!) My enthusiasm came so naturally, because again, I didn’t see a “disability” when I saw Jesse - he was just who he was - a light to the world! ❤️

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Some of my fondest memories of Jesse take place at home or while traveling. His favorite shows are America’s Funny Home Videos and The Tonight Show with Jimmy Fallon (he has a big sense of humor). I remember hearing him all the way across the house belly laughing on end and trying to act out the skits on the The Tonight Show or copying the goofy incidents in the Funny Home Videos. I love watching him as he pretends to score a touchdown while watching a televised football game too. With a big grin on his face and a loud hoot of victory, he’ll throw his pretend football to the ground. I often reminisce on another time when our family was traveling through the mountains when we were young. At the base it was warm, but as we ascended in elevation it began to snow. Jesse remarked, “Short summer, Mommy”. Hahaha I just can’t get over that one!

Growing up with Jesse has taught me valuable life skills from the very beginning. In the early years, it was required that I become more independent and mature, as Jesse demanded much of my parents’ time. With him, daily tasks needed more attention; therefore, I learned to have patience, feel compassion for others, and take pride in others’ accomplishments. In seeing the joy Jesse brings to our family, I’ve learned to accept and appreciate people from all walks of life. In part, I believe he’s the reason I’ve chosen this career path…I have him to thank for a piece of that.

Jesse is living a very happy and successful life too. He graduated from high school in 2013 with the rest of his class and has worked in multiple different settings since - Dairy Queen, Denny’s, and a local cafe. He can read and write. He loves people and people love him - and I mean everybody! He was the manager of the varsity basketball team his junior and senior years, being there to bring a smile and encouragement at each game. Everyone loved it, including him of course! He went to prom with one of his best friends too. 😁

Jesse has thoroughly enhanced our family life and everyone around him! Most importantly, his love has brought out our love. His personality is stellar too! He’s easy-going and happy. He has a sense of humor that can crack a smile from anyone, and a soft heart. He also is a very time orientated person who needs a routine - he sure keeps us on track! He even makes sure we do not forget to pray our thanks to God before every meal. He also complains the least of anyone in our family and is outgoing and willing to uplift a friend. He has a keen sense of what others are feeling too, which is a gift that not everyone has. He’s the first to notice and the last person to leave your side during a difficult time, offering a soft “I love you”. I love you too, Jesse. ❤️

Going back to my first pondering thought - What is it that makes us believe people with Down Syndrome shouldn’t have the same rights or inclusion as others? Why is that even on the table for discussion? It all goes back to obscene beliefs and outdated laws. It was believed as late as the 1980’s that people with Down Syndrome should be institutionalized, which is so far from reality. They thrive when nurtured! Since then, the community has made great strides, but there is still improvement to be made.

Today, there are laws that negatively impact people with Down Syndrome in their ability to work a full time job and still receive Medicaid. This often impacts their freedom to live independently while working, as Medicaid helps to supplement their income in support of extra day-to-day living expenses they may need. Without Medicaid, they are most often unable to pay for these extra expenses with their salary alone. This forces them to choose: full-time work while being dependent on others to live, or Medicaid without a fulfilling career. These laws are keeping people with Down Syndrome from living a normal life they otherwise have the ability to live. They are not held back by Down Syndrome, it's the laws that are holding them back. 

What to do? The National Down Syndrome Society is “the leading human rights organization for all individuals with Down Syndrome”. Their many initiatives focus on objectives to improve the outdated laws that effect those with Down Syndrome. Per their website, they are looking to end #LawSyndrome:

-Increase income limitations for those who have disabilities and rely on Medicaid benefits 

-Create a more portable, more flexible Medicaid program for those with disabilities

-Create tax incentives for small businesses and corporations to hire those with disabilities 

-End sub-minimum wage practices 

-Expand successful disability programs that help these individuals achieve economic self-sufficiency 

Ways to get involved:

  • Check out NDSS’s Law Syndrome website! Specifically, watch the touching two-minute C21 Restaurant video (it’s so creative!), read their campaign objectives, and write a short note to your representatives. It’s neat - You can fill out a quick form and your message will automatically be sent to your state’s Representative and Senators! I know it works, because I even got an instant auto-reply from one of our GA senators. 

  • Race on 3.21 for World Down Syndrome Day - “any place at any pace” to raise awareness for the Down Syndrome community. You can walk, run, swim, bike, hike, or move for 3.21 miles!

  • Watch this inspiring video of a man with Down Syndrome addressing our political leaders in a powerful speech about the importance of people living with Down Syndrome in science and research!

Have personal stories about someone you know with Down Syndrome? What do you love about people with Down Syndrome? Comment below and share on social media on 3.21!

❤︎ Stephanie