Hello, friends! Today I’m interviewing my sister Stella, a 19-year-old girl with Down syndrome, about what it’s like to have this disability.
Stella attends our local high school, spending part of the day in special education and part of the day in mainstream classes. She enjoys music, spending time with her loved ones, singing (karaoke or on her own), and watching YouTube. Beloved by her family and friends, Stella charms people around her (at least, most of the time).
Stella has volunteered to offer her insights about Down syndrome, friendship, and life.
Stella sits next to me on the couch. I have my laptop, and she watches me type. She speaks thoughtfully, often taking long pauses to consider what she wants to say. Sometimes she looks at me and smiles.
LUNA: Tell me about yourself.
STELLA: My name is Stella. Someday I’d like to be a model. I have one sister. Her name is Luna. She’s a fun sister to be around.
Down syndrome and therapy
LUNA: Can you tell me about Down syndrome?
Hmm. People with Down syndrome have 21st chromosome. (pauses, whispers to self) Being Down syndrome is awesome, and I learn about different things. People with Down syndrome need extra help.
That’s true. What types of extra help do you get?
Teachers, parents, taking care of yourself… That’s it.
You get therapy, right?
Tell me about therapy.
Um, I have, um, speech. Um, it will help you with difficult things to say, like s and z to work on.
You’re pretty good at s and z sounds. You also get occupational therapy. What do you do in occupational therapy?
Um, cook, or clean bathrooms, and playing games, and puzzles because they’re tricky.
Do you have fun in therapy?
Yes, I do.
Tell me about respite care.
Her name is Hermione. She’s my provider. Sometimes we go out shopping, eating, going to see a movie. Something is most important: have fun. Hermione is a fun person to be with. She’s funny. She’s a fun person. She got her braces off.
Down syndrome science
Would you please explain in your own words where Down syndrome comes from?
(She smiles, thinks for a while) When you’re born with Down syndrome, you get an extra pair of DNA from your parents. They don’t know who gave it to you.
If you did know who gave it to you, what would you say to them?
Who gave me, um, extra DNA code? That’s it.
Let me clarify. Maybe I’ll ask a question that makes a little more sense. How do you feel about having Down syndrome?
Exciting. Fun. And lucky.
So, would you say that you are happy to have Down syndrome?
Yes. (smiles at me, giggles)
What are some ways that Down syndrome makes you different?
Um… Happy. Um… hmm… People love to sing music you like to listen to. Your face. Your hands. Your toes. Freckles.
Many people with Down syndrome are good at making friends. Is it easy for you to make friends?
Would you like to tell me about your friends?
I introduce my name. I can tell them “What do you like to do?” Make plans for a play date. Hang out. Chat. Sometimes laughing. Get along easily. Sometimes friendship doesn’t work out.
Would you like to tell me about when friendship doesn’t work out?
Make up. Be friends again. Make sure to say sorry. Try not to hurt someone’s feelings. Try not to get mad.
Would you like to tell me about your boyfriend?
(giggles) His name is Troy. I have a crush on him! He’s funny… cute… Also, he has autism. We’ve got a lot in common, like music and things we like to do with each other. He put his head on my shoulder. I think it’s cute. We get along and sit together on the bus and have a very romantic time.
Good for you!
Some people reading this might be parents who have or who are going to have a new baby with Down syndrome. What would you like to tell parents of children with Down syndrome?
When babies are little, they didn’t know better. Sometimes they have to cut bangs and other people will feel shocked. And be careful with scissors!
(Stella is referring to an incident about 5 years ago in which she cut her own hair. It was pretty bad! She looked ridiculous. Stella, upon reading this, laughed and agreed.)
Sometimes, parents might feel worried because they don’t know what Down syndrome is like. So, can you tell them what Down syndrome is like?
Um… happy! Excited.
So, do you think their baby with Down syndrome is going to have a lot of fun?
What types of things will they get to do once they get older?
Independent. Cook. Hang out with your family members. Go out to eat. Go to pet store to see a cute dog. Go to your favorite college. Get a dog. Be responsible for a dog. When you got a dog, take it to a vet.
(Stella and I are going to go to the pet store to think about future dog ownership. College isn’t a realistic option for many people with Down syndrome, but a few do attend. Stella is part of an excellent program that teaches her job skills.)
Do you have any advice for other people with Down syndrome?
Be happy. Go for a walk. Go out to eat. Hang out with your family members, to make you feel better. Eat more vegetables and stay healthy. And stay safe. And be careful with strangers around you.
I think that’s very good advice.
Also, do not bully other people.
Do you have more things to say to people, or just to say about Down syndrome?
Being Down syndrome is fun. Just be yourself! Be talented.
Stella wanted to talk about me a little, so I threw this in here. This may be partially biased by the fact that I was the one asking the questions.
What’s it like to have an autistic sister?
Exciting. Fun. … A star.
A star? Who’s the star?
You. Being with autistic sister… that’d be awesome.
What else would you like to say about having an autistic sister?
I like to play games with her, make cookies together, go for a walk… That’s it. I’m just happy to have autism sister.
I’m happy to have you too.
Fake names were used to protect people’s identities. (Stella came up with the names. As you can see, she likes Harry Potter and High School Musical.)
Many thanks to Stella for sitting with me and doing this interview! If you leave a nice comment, I’ll read it to her.