March 21st is World Down Syndrome Day, a global day of recognition and celebration. While people may know someone with Down syndrome, not everyone knows exactly what it means to have Down syndrome. Trisomy 21 (the medical term for Down syndrome) occurs when an individual has an extra partial or whole copy of chromosome 21. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms and functions as it grows during pregnancy and after birth. Almost 50% of babies born with Down syndrome are born with congenital heart disease, while others have vision problems, hearing issues, hypothyroidism, and a weakened immune system. In the U.S., about 6,000 babies a year are born with Down syndrome, making it one of the most common chromosomal conditions. With so many being affected by Down syndrome, the United Nations began observing World Down Syndrome Day to not only celebrate those with the disorder, but also to educate and end the stereotypes that surround Down syndrome.
While people with Down Syndrome may hit certain milestones later than others, when given extra support with services like Early Intervention, speech therapy, occupational therapy, and physical therapy, those with Down syndrome are just as capable of achieving success. People with Down syndrome are often social butterflies who have interests and hobbies just like any neurotypically developing person.
To help educate our community about the importance and beauty of Down syndrome, I interviewed two people: Timmy Motherway, a 7th grade student at East Rockaway who has Down syndrome, and Ms. Perrone, 9th grade English teacher and mother of a child with Down syndrome.
Interview with Timmy:
Timmy, March 21st is World Down Syndrome Day. It’s a day to celebrate the lives of people like you, who were born with Down syndrome. Can you start by telling everyone about yourself?”
“I’m Timmy. I’m thirteen years old. I go to East Rockaway High School. This is my first year in high school and everyone loves being best friends with me. When I walk in the hallways, everyone says hi! I love playing the XBox and Wii, I love having my friends over, and I love having some fun.”
What are your favorite things to do here at ERHS?
“I love saying ‘Hi!’ to my friends in the hallway. I love doing the morning announcements on Tuesdays. I love going bowling with my friends on Tuesdays for school. I love saying ‘Hi!’ to my sister [sophomore Maya Motherway]. She is the best sister of all and she is a really great athlete.”
What do you want people to know about Down syndrome?
“I am a great kid but sometimes it is hard to make the best decisions. With everyone’s help, I am capable of learning so much at East Rockaway. Sometimes it is hard to get my words out because I stutter…but if all my friends help me, I can speak everything because I am a good kid and I love everyone.”
Does having Down syndrome make school different for you? How so?
“Yes! I have Down syndrome and I learn differently. People help me with speech, PT, OT, and they help me with a lot more! Ms. Kinkaid is the best speech teacher–also Ms. Mallor. They help a lot because I get tired sometimes. I keep trying and trying and I exercise so I can get stronger.”
Who is your hero? Who do you look up to in life?
“My sister is the best sister ever. She is the best athlete. She teaches me a lot…So Maya, if you are reading this, I love you so much!”
What do you want to be when you grow up?
“When I grow up, I want to be a police officer!”
As you can see, Timmy is fun-loving, caring, outgoing, and a great student! At every basketball game, you can hear him cheering on his sister Maya and the entire team. Not only is he the team’s number one fan, but he is also always right in the center of our pre-game huddle.
After interviewing Timmy, I spent some time posing questions to Ms. Perrone. Ms. Perrone is a 9th grade English teacher here at ERHS. She has been teaching in East Rockaway since 2012, and she enjoys working as The Gull advisor as well. Since she has a daughter with Down syndrome, I asked her questions about what World Down Syndrome Day means to her.
Interview with Ms. Perrone:
Ms. Perrone, can you tell us why World Down Syndrome Day is so important to you?
“Of course! World Down Syndrome Day is very dear to my heart. My five year old daughter, Olivia, has Down syndrome. She is the funniest, spiciest, most clever kindergartner I know. She has brought such joy to my life and others around her. World Down Syndrome Day is a day of celebration for me.”
What does Olivia enjoy doing? What does she like?
“She loves her family, especially her older brother and little sister. She loves Bubble Guppies and sleeping in and yogurt and Pete the Cat. She cannot stand the cold weather, but she’ll stay at the beach all day. She is opinionated and strong-willed and will let me know if she doesn’t want to do something.”
What does school look like for your daughter?
“For Olivia, school looks very similar to what any kindergartner would experience. She waits for the bus every single day, she goes to her morning meetings on the carpet, plays on the playground, bangs the drums in music class. She does everything that my 6 year old son does, but with extra help. She is also learning to speak with the use of an AAC device. It’s like a special iPad made to help her communicate her needs and decrease frustration.”
What is it like to have a child with Down syndrome?
“It is a privilege to raise a child with special needs. It can certainly be tough to balance all of her extra support services and to go to more doctor appointments. But these obstacles can be overcome. I truly believe that every good and perfect gift is from above, and being Olivia’s mom is a blessing. She has shaped my heart in ways I cannot explain. I am a better teacher and a better person because I am her mom.”
What do you want people to know about Down syndrome?
“That it’s not something scary, or something to be feared, or to feel sorry for. I say this because when I first found out that my daughter had Down syndrome, I was terrified. But this reaction was one of ignorance and fear, because there was so much I didn’t know. I had to learn from other parents, from doctors, from early intervention specialists, and from other people with Down syndrome. I had to learn how wonderful Down syndrome truly is. I get to be part of the lucky few!”
To celebrate Timmy, Olivia, and others with Down syndrome, wear your craziest pair of socks on Thursday, March 21st! Whether they are mismatched, bright, funky, or cool, doing so will get people asking questions, and then you can educate them about Down syndrome!
Shannon Foley • Mar 20, 2024 at 12:46 pm
What a great article! Thank you so much for bringing light to Down Syndrome and celebrating World Down Syndrome Day.