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Mother of identical twins with Down syndrome shares what she’s learned from her daughters

Two women with Down syndrome smile as they embrace each other’s shoulders. The woman on the left is wearing a hat and glasses, they both wear matching tie dye shirts.
Courtesy of the Perry family
Katie (left) and Amanda Perry (right) in Nov. 2021.

Annette Perry has two beautiful daughters with Down syndrome who have changed her life for the better. To learn more, KUNR Youth Media’s Ellie Mundt talked with her fellow Church of Jesus Christ of Latter-day Saints congregation member Perry about how Down syndrome may be a bit more like “Up” syndrome.

Ellie Mundt: So, tell me about your twins.

Annette Perry: We have identical twins. They’re young women. They’re 34 with Down syndrome, and it’s statistically one in a million, so we feel like we’re pretty gifted.

Mundt: What kind of things do you like to do with them? 

Perry: We love to dance, and we love to sing. They love going out. They love eating out. They love traveling. They’re very good travelers.

Mundt: Do they really like trying new things?

Perry: You have to prepare them in advance for almost anything because if they’re caught off guard, it throws off their world and into orbit for a few minutes. Amanda will force Katie, who likes to be called “Cool Dude” out of her comfort zones for some things. And “Cool Dude” is just chill and can deal with a high-anxiety person. So, they’re a great little duo.

Mundt: Do you think that because they communicate differently, people assume that there’s not as much happening inside their head that really is?

Perry: I do. Their speech is difficult to understand. Sometimes we have to play charades, but because of their tongue, it is harder for them to shape words in their mouth. And sometimes, I’m not gonna lie, I can’t understand them, and I’m their mother. We’ve learned that through having them say things slower, it helps.

Mundt: Did you use sign language at all when learning to like talk and communicate?

Perry: We did. Yeah. The very first thing that Amanda communicated to me, I was standing by the refrigerator, and she came up to me and pulled my shirt, and she signed the word, “Drink, please,” and I looked at her, and I went, “Drink, please?” And she goes, ”Yeah,” and I just started crying, like, oh, we’re communicating!

Mundt: Did they ever get frustrated when it’s really hard to communicate something that they want to?

Perry: Yes, they do. It’s very frustrating for them and for us, and especially for them because they know what they’re saying. And when I go, “Sorry, what?,” Amanda, the one twin will go, “Oh!” and have this frustrated, “Oh, Mom!”

Mundt: So once a month, our church has the day where you can have open mic, and anyone can get up and share, and almost every single time they both get up and they share something. To me, that’s really cool because that’s, like, so scary for anyone. Have they always been that confident?

Perry: You know, it’s crazy because they’re confident. Amanda will wake up in the morning and she’ll look in the mirror and she’ll go, “I so nervous.” And I go, “Why are you nervous, sweetheart?” “Because I so hot. I so hot.” And I’ll just, wow, if I could bottle that self-esteem, I would put some on me. So, super confident, and yet, if you throw them into something, without being prepared, they’ll just freeze. But they love the limelight. They love being up on a stage. And they love performing, but you do have to prepare them.

Mundt: I feel like I could learn from that, how self-love can help you with confidence.

Perry: Yes, I wish I had more of it. That’s something I have to work on even at my age every day. I wish I were Amanda, but I’m looking okay, and I’m gonna make it today. She just feels beautiful every single day and I love it.

Mundt: How have your daughters changed the way you love?

Perry: Probably more unconditionally. They love us unconditionally. I could have a giant zit on the end of my nose or a wart if I had one, and they wouldn’t even see it. And I think that’s helped me to love more and be more unconditional in my love towards others.

Mundt: If you could tell the whole world something about Down syndrome, what would you say?

Perry: I would say that it’s “Up” syndrome. It’s not Down syndrome because they keep us laughing and keep us positive. I think I would challenge someone to go out of their way, even get to know someone with a disability, and try and understand them a little bit more because it is an incredible world to step into and fun, too.

KUNR Youth Media’s Ellie Mundt is a recent graduate of the Academy of Arts, Careers and Technology in Reno. KUNR Youth Media is a special partnership with the Washoe County School District to train the next generation of journalists.

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