Puerto Rico’s Sofía Jirau became the first Victoria’s Secret model with Down syndrome earlier this month – a welcome moment of disability inclusion.
People with Down syndrome have an extra chromosome – chromosome 21 – which alters way a baby’s body and brain develops according to the Centers for Disease Control and Prevention. This can lead to mental and physical challenges for children, including difficulty speaking as quickly as other children, as well as almond-shaped eyes.
Approximately 6,000 babies born each year will have Down syndrome in the U.S., aka 1 in every 700 babies.
Children and adults with Down syndrome can lead meaningful, productive and happy lives.
“We have the same needs, desires and wants, just like everybody else and we are ready, willing and able to show society our abilities,” says Charlotte Woodward, a community outreach associate at the National Down Syndrome Society.
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What do you wish people knew about Down syndrome? “People with Down syndrome want and deserve the same opportunities just like everybody else. We want to be able to live life not on other people’s terms, but on our terms.”
What are the most common misconceptions about Down syndrome?
- “When I was born, doctors told my parents that I would never read or write and that when I was older, I would work in a sheltered workshop. I proved them wrong.”
- “Down syndrome is not contagious. It is an extra copy of the 21st chromosome in our DNA that is diagnosed at birth. While we may have some challenges, it doesn’t define who we are.”
What do you like to do for fun? “I enjoy writing, reading, dancing, acting, baking. I enjoy sports like baseball. I enjoy traveling. I like coloring.”
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What is the most common misconception about Down syndrome? Mom Lauren Ochalek says: “Individuals with Down syndrome belong in an inclusive classroom alongside their typically developing peers. That research really does suggest that that is where they should be, that they have greater outcomes, that their typical classmates learn lessons of friendship and understanding, respect, problem solving, leadership, empathy.”
As a parent, Lauren, why was it important for you to be a part of the Down syndrome community? “It’s been a lifeline for our family. It truly has. From our local Down Syndrome organization here in Maryland, Down Syndrome Association of Maryland, that does such wonderful work, not only for the families in which it serves, but within the community as well. As well as the social media networks that have really supported us from the get-go.”
What do you wish people knew about Down syndrome? “Presume competence,” Lauren adds. “To assume that people with Down syndrome have the ability to learn, to think, to feel, to understand.”
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What are common misconceptions about living with Down syndrome? Mom Kelli Caughman explains: “Everyone believes that people with Down syndrome are all the same, that they have the same characteristics, that they learn the same, that they experience the same milestones at the same time. They assume that they are not capable of being productive in a general education classroom.”
Kelli, is it important for you to be involved in the Down syndrome community?
- “I choose to post a lot on social media because when I initially got the diagnosis, I did not see many people that looked like my son, or that were a reflection of me. So I decided that I was going to just put everything out there and just be an open book for parents to find children that look like my son or just see a different perspective of what Down syndrome can look like.”
- “Medical bias is definitely a hot topic. We can show up to doctor’s appointments, and some doctors would treat parents as if they don’t really understand the diagnosis or they assume that we don’t understand and assume that we’re not aware of the resources that are out there.”
What does your son Cree like to do for fun? “He loves basketball. That’s a sport that he’s really been interested in ever since he was maybe 1 – not even walking or standing. And he was so precise when it comes to throwing the basketball. So he’s super great at that. I hope to have him in the Special Olympics one day playing basketball.”
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What are common misconceptions about living with Down syndrome? “That we can’t do things like work or go to college but I graduated from University of Maryland, Baltimore County’s 4-year college SUCCESS program and worked as an intern there while also doing dance and acting there.”
Is it important for you to feel connected to other people who have Down syndrome? “Yes, and also to be included with others and not left out.”
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What do you wish people knew about Down syndrome? Mom Jennifer Packer says: “I want (Jacorey) to be able to be included in play on the playground or going to the movies with his friends, or even being able to have a job when he gets older. There’s a lot of things people with Down syndrome are able to do. We just have to give them the chance to be able to do it.”
What makes Jacorey happy? “It doesn’t take much to make him smile or laugh, but definitely eating or ‘Sesame Street’ or any type of music, or silly dances from his brother and sister and cousins.”
Jennifer, do you have any advice for fellow parents? “It’s not as bad as what some people may perceive Down syndrome to be, because my life has completely changed for the better. Because I feel like having Jacorey, I am more aware of the small things, the small milestones mean so much more than when I had my older two kids.”
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What do you wish people knew about Down syndrome? Mom Feleceia Wilson says: “I wish people had a general knowledge of what Down syndrome is first. I know that when Zoe was born, I didn’t know what Down syndrome was.”
What does Zoe like to do for fun? “Zoe likes to sing and dance and act. She also really likes going to the theater. She likes to see shows at the theater. She likes to also go to basketball games, and plays very much so like other people. She loves to play with and hang out with her friends and her family members.”
Feleceia, as a parent of a child with Down syndrome, what are the biggest misconceptions? “People think that the folks with Down syndrome are always nice and always kind. Zoe has her moments. She expresses all of the emotions. The biggest one though is the ability to accomplish.”
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