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How My Child With Down Syndrome Changed My Perspective on Diversity

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Before I was pregnant with my son, Augie, I had only met one person with Down syndrome. My limited experience, both in breadth and depth, resulted in stereotypical perspectives of Down syndrome molded by general information anyone could find on Google. It wasn’t a negative perspective; it was just narrow and lacked any real substance. I had a textbook understanding.

And then I had Augie.

In the early hours after his birth, I studied his facial features and his tiny body, looking for all the characteristics I read were typical of Down syndrome. Instead, I noticed how his mouth was slightly open and his lips pursed as he slept, reminding me of his big sister and daddy. I noticed how his hair stuck straight up. I noticed his cute button nose and chubby cheeks. His expressions reminded me of his big brother. My heart fluttered as he grasped my finger with his itty-bitty hand. I gently kissed a soft fold on the back of his neck as he rested skin-to-skin on my chest. That extra kissable skin on his neck is characteristic of Down syndrome, but I no longer thought about it that way. He was just Augie.

baby with down syndrome sitting in a chair smiling

I relished in the beauty of my son. And in those early hours, my fears and worries of what it would mean to have a child with Down syndrome melted away. He was my son. I felt joy. Down syndrome was and will always be a part of him; his extra 21st chromosome is attached to every cell in his body. And that is amazing. Amazing too that his extraordinary genes are also hugely influenced by his father and me. This was something I was uncertain of before I had Augie, and became clear to me as soon as he was in my arms.

Now, almost a year later, those feelings for him have only intensified. I love the characteristics that beautifully connect him to a community of individuals with Down Syndrome. Like his eyes. They are the most beautiful eyes I’ve ever seen. A deep blue color somewhere between his daddy’s icy blue eyes and my dark blue eyes and slightly almond-shaped like so many of his friends with Down syndrome. The likeness of the Down syndrome community is beautiful.

But it’s the diversity that is magnificent.

Diversity not only in physical characteristics, such as facial features or body shape, but also in personality, abilities, experiences, interests, challenges and successes. This was the perspective I was missing before I had Augie. Now having the privilege of personally knowing many individuals with Down syndrome, including my own son, I get it. I get what I was missing before. Augie is just Augie. There is no textbook, Google article or even doctor who could predict what my son would be like. Generally, maybe. But it’s the intricate details that make him who he is.

There is only one Augie in the whole world, and I love him to pieces. I love everything about him. Not everything is always easy, there are very real challenges — but there is also very real joy. I would choose him and this life a million times over.

Diversity is the beauty and strength of this world.

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25 People With Down Syndrome Show Off Their Individuality

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Oftentimes, people think Down syndrome has one “look.” While many people with Down syndrome share characteristics, we know every person is an individual. We asked members of our community to send us a photo of themselves or a loved one being proud of their individuality!

1. “This is Sloane being sassy testing out her new big girl car seat!”

toddler girl with down syndrome in car seat

2. “My precious rockstar Brendan. He’s 22 years old. I love him more and more everyday!”

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3. “Five-year-old Max hugging his best friend Ally!”

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4. “This is Audrey! Both sweet and sassy. She loves swimming, dancing and balloons! I can’t believe she is 11 in a week, time flies when you’re having fun!”

girl with down syndrome wearing pink shirt

5. “This is Josie and Jamie, both are 7 years old. They are both adopted from China. They were pretending they were princesses!”

two girls with down syndrome wearing scarves on heads

6. “David sharing a touchdown celebration!”

man with down syndrome playing football

7. “This is my Silly Lilly, 8 years old. She is a goofy goose!”

girl with down syndrome sitting in car

8. “This is our sweet Olivia Grace. She is almost 6 months old and she lights up our lives and all those who meet her feel the same way. She is magic. She may be small but she sure is mighty!”

newborn baby with down syndrome

9. “Voshon, 22 years old, showing off his style!”

man with down syndrome wearing formal suit standing next to car

10. “Riley, age 11, demonstrates his horseback riding skills!”

boy with down syndrome riding a horse

11. “This is our precious Kate (5) at this years Buddy Walk! Our team win third place for most donations. She loved her trophy! We are so proud of her and love our angel so much!”

girl with down syndrome sitting in wagon holding doll

12. “Max and Jude, both 2 — they love music and eating!”

twin boys with down syndrome wearing plaid shirts

13. “This is Gigi, 26 months.”

little girl with down syndrome standing in front of christmas tree

14. Marc, age 10.

boy with down syndrome wearing a collared shirt and tie

15. “Jonathan is 15. He loves watching YouTube, dancing to Michael Jacksons ‘Thriller,’ and hanging out with his family. He loves Special Olympics swimming, baseball, and basketball!”

boy with down syndrome in pool

16. “This is Kaleb. He is 17 months old and not only born rockin’ an extra chromosome but also three months premature. He is always showing us his big personality.”

little boy with down syndrome sitting on carpet

17. “This is Bailey. She’s 26. She’s fierce and independent and strong willed. She treats everyone like family. She’s got a hug for everyone and a smile when you need it. She’s taught our family to slow down and enjoy life to the fullest. She’s definitely the star of our whole family.”

girl with down syndrome and green hair

18. “Stephanie Tacey loves to put her outfits together on a daily basis and special events like the Winter Formal provided by the program she attends.”

girl with down syndrome wearing red dress

19. “This is Nyiah Renee, she is going to be 9 in two weeks. She loves to dance and sing!”

girl with down syndrome wearing pink glasses

20. “Hadley, age 8, after she wrangled the Bangor Police Department into a group photo.”

girl with down syndrome standing with police officers

21. “Jordan, 16, all dressed up for formal day at school!”

boy with down syndrome wearing a suit and standing at bottom of stairs

22. “Alexander, 21 year old, checking in to his freshman dorm!”

boy with down syndrome standing outside college dorm door

23. “This is my son Ben. He just turned 6. He’s absolutely amazing! This is him heading to yoga.”

boy with down syndrome carrying yoga mat

24. “Kensley Melvin, she is 4 years old!”

girl with down syndrome sitting outside under tree

25. “This is Jack! No matter what the circumstances are, he always has a smile, and can light up a room.”

baby with down syndrome wearing shirt that says warning i knonw i have an extra chromosome and i know how to use it

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This Artist With Down Syndrome Was Institutionalized for 35 Years. Now, Her Work Is World-Renowned.

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Teen With Down Syndrome Brushes Off Bullying and Breaks Into Modeling

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Teen Gigi Cunningham overcomes bullying she faced in school to become a successful model and raise awareness for Down Syndrome.

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What My Students With Down Syndrome Can Teach Us About Refugees

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The world is so troubled right now; everything seems jumbled and confusing. We have a new President who seems to not care about those who need to be cared about the most. He mocked a disabled man, has said cringe-inducing things about women, and has nominated someone to run our education system who might launch those in the disability world way back in time. Just a few days in and there are so many stories and executive orders that I have trouble catching up on the news. When my students with Down syndrome ask me about the state of the world, I honestly don’t know what to say.

What I do know is this: the Down syndrome community is large and full of compassion.  Last year when we studied volunteerism, my class chose Kentucky Refugee Ministries to learn about and help. We learned what a refugee is: a person who has been forced to leave their country in order to escape war, persecution, or natural disaster. We read stories about children who were separated from their parents for years, some who are still waiting for their mom or dad to come home. We read the success stories of college graduates and little girls who don’t speak the same language but hold hands on the playground. When the lesson was over, there was no doubt — they wanted to help their new friends who have finally found a place to call home. No politics, no agenda. They saw humans who needed help, and they wanted to welcome them to our area and let them know they are loved.

We made “Welcome to Louisville” cards and brought in kitchen utensils, bedding, and school supplies for students who would start school in this strange new world almost immediately after their arrival. We went shopping as a group to find items they might need, and filled a 15-passenger van to the brim with donations for our new friends.

Last week, when one of my adult students asked me to explain what was happening at the airports on TV, my heart sank. I had to explain that there is not only a hold on refugees for a while and people from Syria are banned from our country indefinitely, but also that the amount of refugees allowed in the USA has changed drastically, from 110,000 to 50,000. His response was, “Why can’t we help them anymore?”

That was my light bulb moment. We can help them! We can educate others
about what a refugee is. We can write more cards for those who have to wait 120 days before getting here. We can learn about their culture so we can find our similarities. We can show the world that even though we might not speak the same language or have the same IQ or political beliefs, we can be good people and encourage others to be good and kind and pure of heart.

I am so lucky to work with individuals with Down syndrome. It sounds cliché but they truly do teach me more than I could teach them. Kindness first. Don’t judge. Be empathetic. Cheer others on. A bad mood can be lifted with a dance. And the newest life lesson: When you’re feeling helpless… find a way to help.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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To My Son With Down Syndrome as We Go to Your Kindergarten Class

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As I walk through the kindergarten gates, I hook it under my foot and unlatch the lock one-handed as I’ve always done. And my mind says “Open-shut! Good boy!” because I’ll be saying it shortly.

We have so many small rituals, Parker.

On one of your first days of daycare, a mum walked her little boy in while chatting away brightly. “Help me open it. OK, now shut. Good boy!”

I was overwhelmed. I looked at her son, not much larger than mine, walking and talking. I felt you’d be this small forever. A babe in arms, Down syndrome affecting your size and growth.

I waited for your voice to come. Your gross motor, your laugh and your independence. I watched as you walked at 2 and a half. I still wait for your voice to come — but now I’m OK with waiting.

And now you’re 3.

I walk into your new kindergarten room. I watch you play outside with your friends. I stand on this side of the glass while you shout and bounce and pull a fairy dress over your head while slapping on a cowboy hat. You’re always the sharpest and most colourful dresser.

I complete our ritual — I approach you, you ignore me and flirt with the closest teacher. I pick you up. After a token struggle, you blow kisses to every teacher on the playground while waving furiously. I miss a teacher, you yell at me, we spin so you can blow the final kiss.

You wrap your arms around my neck and I collect my kisses. If you’ve had an extra spectacular day, I know to expect a nose rub too.

I watch you pack your name tag away in the basket, and try valiantly to find your socks so I don’t get cranky about another pair being eaten by lost and found.

You may not communicate often with words, but you are a cup I cannot come close to filling. Input and output are like giving and taking. They don’t always have to come out even. But sometimes, your cup will unexpectedly run over — and fill mine with joy.

With emotional intelligence beyond your years, you sometimes pre-empt my needs before I’m conscious of them. I get an extra hug today for putting your backpack on you.

We head to the exit. I open the gate with my foot, because I’m holding you on my hip. I’m distracted, because I’m thinking about your missing socks. I shut the gate.

You pat my cheek and swivel my face around. You always command nothing less than my undivided attention.

“Goo-boy,” you say to me.

Just once, because that’s my ritual. Our ritual. And you were always listening.

A version of this post was originally published on Parker Myles.

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Photo credit: Life Is Beautiful

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