Sarah, with a song

Sarah, with a song
by James Robert Giza

Baltimore’s Child
A Special Edition: Focus on Autism
© 2009, Baltimore’s Child

I emailed my first question to Sarah Stup, the poetess from Frederick, while on vacation with my family in northern Cape May, N.J. I was sitting on the front porch of the house where we were staying, on a Monday morning in October 2008. I knew Sarah liked the poetry of Robert Frost, and I told her in my email that I did as well. One of my favorite poems of his, I told her, was “On A Bird Singing In Its Sleep,” which I can recite aloud from memory. I asked her if she knew it and then copied it in my email to her in case she didn’t have it nearby. It’s really a beautiful poem.

A bird half wakened in the lunar noon
Sang halfway through its little inborn tune.
Partly because it sang but once all night
And that from no especial bush’s height,
Partly because it sang ventriloquist
And had the inspiration to desist
Almost before the prick of hostile ears,
It ventured less in peril than appears.
It could not have come down to us so far,
Through the interstices of things ajar
On the long bead chain of repeated birth,
To be a bird while we are men on earth,
If singing out of sleep and dream that way
Had made it much more easily a prey.

I ended my email by asking Sarah what she thought about that poem.

Sarah is 25, two years younger than I am. She can speak at times, but she normally has to be prompted to do so, and her speech is rarely for communicative purposes. As she has written, her “sounding voice is broken.” Sarah has Autism.

Later that evening, as I walked alone along the beach, I thought about Sarah and about that poem. I smiled sadly, thinking, “Sarah is like a songbird that cannot sing aloud.” I recalled her writing about the beach in “Are Your Eyes Listening?” a self-published collection of her essays and poems. Like in this poem, called “Wave.”

The beach pleases me when
powerful waves roll in to meet a
young heart that wishes to wash
away pain of autism. Autism leaves
with the water. But air brings it
back. Really love the time waves lap
over my body. They tell me of a new
life when I will taste the salt of a
free soul. Visit a new world of
painless renewal. A wave of hope.

Finding her voice
Judy Stup can remember her younger daughter waking up in the morning, standing in her crib, and saying, “I’m up, come and get me!” She can remember handing her the phone and hearing her say, “Grandma, will you come over?” Sarah developed typically until she was 3. She had been a calm child, but now she was hyperactive and impulsive. She would climb the chest of drawers in her room and other furniture in the house and jump with no fear. She would swing on the indoor shutters and so high on the swing at the playground Judy would get scared she was going to go all the way around. She would eat anything, drink anything. And she ran. “I would have to hold her hand and watch her very closely,” Judy says. “I could never turn my back. She would run toward the street and just keep going. She would never look. I would try to teach her about that like I did my other daughter. It meant nothing.”

She lined up her crayons. She creased the pages in books. Her language ability plateaued and became rigid. She began to repeat the same words and phrases to get what she wanted. “It was very gradual,” Judy says. “She just lost some of her language, but the parts that stayed, they would be the exact same words. They weren’t creative any longer.” As more time passed, Sarah lost most of her speech. She would not receive an official diagnosis of Autism until she was 8—her full diagnosis also consisted of severe communication disorder, attention deficit disorder, and perseverative behaviors—but by then, Judy and her husband, Darryl, had long accepted that Autism was, in fact, what was ailing their daughter.
Sarah attended Rock Creek School, a special education school in Frederick, and when she was 8 years old—right around the time of her diagnosis—she learned how to point to the letters of the alphabet on a sheet of paper to spell words. This sheet of paper was then substituted with one arranged like a keyboard, which was then replaced with a Canon Communicator CC-7P, a small, cream-colored device, and later also with a NEO by AlphaSmart, an electronic notepad that has a full keyboard, more like a regular computer. Sarah could talk again, and she had a lot to say.

One of her first requests: She wanted to go to regular school. “That was scary,” Judy says. “I couldn’t picture that ever happening, but we tried because that’s what she said she wanted.” At the time, Judy says, there were only a few parents in the county who had children with more pronounced disabilities, but they were physical disabilities. They didn’t involve the types of behaviors that Sarah had. But Sarah was adamant.

So, after winter break of fourth grade, Sarah’s wish came true, and, with the help of a one-on-one assistant, she began attending Ballenger Creek Elementary School in January 1992. There, she began journaling. Sharon A. West, a special education teacher at the school, would give Sarah a prompt and have her write about it on a computer in the resource room. (West is now a branch chief with the Maryland State Department of Education, Division of Special Education/Early Intervention Services.) “We found out a lot about Sarah then,” Judy says. “What she liked, what she didn’t like, how she felt about things. It was all very exciting, whatever she wrote.”

In her mom, Sarah found her first rapt audience. Late at night, when everyone else in the house was asleep, Judy would be up, reading Sarah’s journal entries. “I just had to have more of her,” Judy says, “more of what she had to say.”

Sarah attended Ballenger Creek Middle School and then Frederick High School where she was an honors student. She graduated from Frederick with a diploma at age 20 in 2004.

Published author
Her final year at Frederick, instead of attending school, Sarah completed an internship at The Arc of Frederick County to prepare for her chosen career: writing. The Arc, which had been attending Sarah’s Individualized Education Program meetings since middle school, provided office space. The school provided a one-on-one assistant. Sarah provided the boxes and boxes and boxes of journal entries and other writing she had been doing since she was 9.

Aaron Stephens, assistant director of The Arc, and an aspiring writer, worked closely with Sarah during that internship. “We used that first year to go through the journals that she had and do some more journal exploration and hone Sarah’s craft,” says Stephens, “but also look at, ‘What is it that you want to do with this collection of works that you’ve made?’ And one of the things Sarah wanted to do was be an advocate. She wanted to teach people about what it’s like to have Autism and what it’s like to be in the world of Autism and how the world should be able to adapt to somebody having a disability rather than the person with the disability needing to adapt to the world. I think that’s one of the main things that Sarah wants to say. In her writing she says she wants people to allow her Autism to come with her, not to hide it, not to be ashamed of it.”

One of the discoveries Sarah and Stephens made was a story she had written in fifth grade about Taylor the Turtle, who has Autism. A boy in Sarah’s class, the son of her one-on-one assistant, had drawn the pictures. The pages were stapled together on the side. During her internship, Sarah and Stephens worked on developing more characters and different stories Taylor might want to tell and “using the metaphor of the shell as somebody with Autism,” Stephens says.

That work eventually became “Do-si-Do with Autism,” a children’s book published in 2006, which tells the story of a day at school for Taylor the Turtle. Sarah’s identification with Taylor is palpable, and the story provides the perspective that characterizes all of her writing: a glimpse of the thoughts and feelings of someone who has Autism, from her own point of view, eloquently and poetically expressed.
Now in its fifth printing, “Do-si-Do with Autism” was illustrated by a pair of then-Villa Julie College art students. The book was made possible through funding from the Maryland State Department of Education, Division of Rehabilitation Services, The Arc of Frederick County, The Arc of Carroll County, and the Maryland Developmental Disabilities Council. The Stup family also contributed to the costs of producing the book. An accompanying CD is currently in the works.

“Are Your Eyes Listening?” followed in 2007. Autism is certainly a prominent theme in the collection, but other subjects include love, family, nature—and writing.

“Writing is my way out of a lonely place where only God knows,” reads one passage in the book. “I feel alive to type. The lid opens and out comes pieces of Sarah, a girl with wings who soars above the place with no hope called autism. I am real when I write. Autism is my prison, but typing is the air of freedom and peace.”

So, most days that’s where Sarah is, typing the air that helps her breathe, usually in the kitchen booth of the Stups’ home in Frederick, writing on her Canon Communicator CC-7P, which is still her medium of choice. Among her current projects is a novel for middle school children tentatively titled, “Paul and His Beast.” (The “beast” for Sarah is always Autism.) She’s sold her current books all over the country and corresponded with many of her readers. “She gets a lot of emails from parents thanking her for giving them some idea of what might be going on with their child, especially if they’re a small child, and what they might be thinking or feeling, how it is for them,” Judy says. “She does get a lot of responses. All over the United States. A lot of parents. And they’ll have questions for her, and she’s usually happy to answer them.”

She’ll even answer a nosy reporter’s questions. Here’s how she answered mine about that Frost poem. It turned out to be the only one I needed to ask her.

Dear Bird in the dark,
You have a dream—
A dream that you can
help assemble an old puzzle,
A strange, screaming puzzle.

Your song will be heard.
You may enrage those
who think differently.
Will you take the chance,
Or choose to sing
only half your song?

Many sang out before you—
Some sang of imperfection,
Others noted blame,
A few sought fame.
But you are a new generation,
A fresh voice.

Sing out, Dear James Bird,
Of the light
beneath the puzzle pieces.

To educate others with your magazine is great. You are nice to help us.

Your new friend with autism
who types to speak,
Sarah
with a song.

To find out more about Sarah, go to SarahStup.com.