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Sarah Ely: Young Adult With Down Syndrome

Posted Feb 27 2011 3:00pm
 This article came through one of the DS lists I'm on and I thought I'd share it.

The amazing and inspiring Sarah Ely on quilting, singing and her website

Sarah Ely is a star. For years, she and her mother, Joyce, have been writing a blog about Sarah's journey into adulthood with Down syndrome. Last year, on Sarah's 21st birthday, they opened JEllen's House of Fabric in Lyndhurst, a sunshine-bathed quilting boutique. The shop not only offers contemporary fabrics and a bright space for creative work, it also employs young adults with developmental disabilities, including, of course, Sarah. The 21-year-old helps pick out fabrics, affixes labels to bags and cards, stocks the register with money and helps rotate the inventory to keep it from fading in the sunlight. She's also the store's "sew-cial" director, hosting activities in the store lounge. With her website getting more than 130,000 hits since October, Sarah caught the attention of Better Homes and Gardens' American Patchwork and Quilting magazine, which featured her in its April issue. She has received cards, letters and photos from people and families she has inspired around the world. In between autographs -- she's being asked for them now -- Sarah answered some questions from PDQ's John Campanelli.

What kind of person are you?

Sarah: Happy.

Sarah's mom, Joyce: And sweet.

All of the time?

(Sarah nods.)

Mom: Most of the time.

I saw on your blog that your mom caught you hiding cookies in the kitchen in the middle of the night. Why did you do that?

Sarah: "Don't touch, Sarah."

Mom: She was afraid her brothers were going to eat them -- chocolate chip cookies are her favorite -- so she hid some and wrote a label on them, "Don't touch, Sarah."

What makes you happy?

Sarah: Music therapy.

What kind of music do you like?

Sarah: Keyboards.

What else do you do?

Sarah: Drums and sing.

Do you have a favorite song?

Sarah: Lady Gaga.

Mom: Sarah sang "Bad Romance" at music therapy [there's a video of the performance on her blog]. She had years and years of speech therapy, which set the foundation, but we had very little speech. Music therapy is what really kicked that speech into gear because she thinks she's singing. She is singing.

What's your favorite thing about fabric and sewing?

Sarah: Pillowcases.

(Sarah's first sewing project was making two Disney princess pillowcases for her friend Kristen in Utah, who had leukemia. Kristen slept on the pillowcases until she died last year. Kristen's mom now sleeps on them. The pillowcases were part of the One Million Pillowcase Challenge, a nationwide effort to give away handmade pillowcases to foster children, cancer patients and victims of domestic violence.)

How many pillowcases has the store made?

Mom: One hundred and two. Our goal was 50.

What's the hardest part of making a pillowcase?

Sarah: Cutting.

Most important thing to remember when sewing?

Sarah: Be careful.

Have you cut yourself or pricked yourself with a pin?

(Sarah shakes her head no.)

Mom: We've been pretty lucky.

You're 21. What's the best thing about being a grown-up?

Sarah: I can stay home alone. . . . My own cell phone.

What's your favorite dinner?

Sarah: Ravioli. My dad cooks. . . . With cheese and sauce.

What about for breakfast? Do you eat chocolate chip cookies?

(Sarah smiles and nods.)

Mom: That's another nice thing about being a grown-up.

Joyce, why did you start the blog?

Mom: For years, people told me to write a book, but a book is so finite. The minute you send it off to the publisher, it's out of date because life keeps happening. There were all these blogs about little babies with Down syndrome. But I couldn't find any blogs about a teenager with Down syndrome. We never knew it would become so well-known and such an inspiration for these families.

What's your message to other parents with Down syndrome kids?

Mom: When you have a child, a lot of people don't know their child is going to have Down syndrome until the doctor holds the baby. They give you such a doom-and-gloom kind of forecast. What this blog is doing is showing these young families that it doesn't have to be doom and gloom. Life is still grand and glorious. It's just a different life.

JEllen's House of Fabric is located at 5259 Mayfield Road, Lyndhurst. Go to jellenshouseoffabric.com or call 440-684-9830. Go to sarahely8989.blogspot.com for Sarah Ely's blog.


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