A Voice of Her Own
Sydney, who will soon turn 18, began speaking when she was about a year old. According to her mom, Lisa Edmond, “After receiving vaccinations at 15 months, Sydney developed chronic and debilitating congestive and gastrointestinal illnesses.” Within a month, she completely lost the ability to speak and was afflicted with apraxia. After visits to three different neurologists – the second of whom erroneously diagnosed Sydney with congenital encephalopathy and told Lisa that the therapies she suggested were “too labor intensive” (“the lowest point in my life,” says Lisa), it was determined that she had autism.
Lisa Edmond shares her story of the challenges – and the joy – of raising this beautiful young woman who has not only learned how to express herself, but whose talent for poetry has resulted in a published book, titled, The Purple Tree and Other Poems.
“When we came upon a means for Syd to communicate, our lives felt as though they’d finally begun to breathe — to at last take a substantial step forward. We experienced such enormous joy. And for Sydney, it was huge.”
Just after Sydney’s 10th birthday, I watched a segment on 60 Minutes II about a mother, Soma Mukhopadhyay, and her son Tito from India. Tito was profoundly autistic, but Soma had taught him to communicate by having him point to letters on a letterboard to spell words. Eventually he learned to write with a pencil and to type on a computer keyboard. Watching that program, I knew instantly that our lives were going to change in a big way. I began teaching Sydney how to hold her hand in the point position, and then how to point to a given letter. Sydney was an eager learner and she soon learned the positions of the letters on the QWERTY (computer keyboard format) letterboard. By practicing each day, she was able to begin spelling words within a matter of a few months; she spelled her first spontaneous words in a short sentence four months after we began.
And so I got to know my daughter the same way one gets to know a new acquaintance: by asking her questions or allowing her to tell me what was on her mind … and there was a lot on her mind. In the meantime, I taught her subjects like history and math and astronomy and began reading literature to her at a level that served her intelligence. We listened to and learned about music and art, and Sydney told me she wanted to learn ballet. She began ballet lessons, and her teacher facilitated her through the movements and exercises. She had a life, her own life, at last.
“Learning should be joyful; it should enrich a child’s life, not overwhelm or be a burden to it.”
Sydney and I had the great good luck and opportunity of working individually with Soma Mukhopadhyay for 18 months. When Soma left California to open her new clinic, HALO, in Austin, Texas, Sydney began working with speech therapist Darlene Hanson in Whittier, CA . Darlene introduced Sydney to her first communication device with voice output and helped her to develop her typing skills. Darlene also invited Sydney, then 12 years old, to give a presentation at the 2005 West Coast Symposium on Facilitated Communication; since then, she has presented in various other venues, including a conference of the Autism Society of America in January 2010, just after she turned 17 (see the presentation).
“I loved to listen to people sing. The songs lilted playfully in my head. Their rhythms palled playfully with the rhyming lyrics. Wanting to play with precious words, I began writing my own playful poems. I particularly played longest to put real observations poetically.”
In the early days of learning how to communicate, I had Sydney write little stories just for fun, and also to develop her creativity and imagination. After a couple years, the stories started to sound rather poetic. And soon, all on her own, she composed poetry that was truly lovely. Sydney peppered her conference presentations with her poetry and was pleased with the responses she received from her audiences. Encouraged by this, and the support of her friend and mentor, Donna Williams, who is herself an accomplished poet, author, and artist, Sydney decided to publish a collection of her poetry. Titled The Purple Tree and Other Poems, her book was recently reviewed by Temple Grandin, who wrote, “Sydney Edmond has written beautiful poetry. The Purple Tree shows that Sydney has a beautiful mind.”
In 2008, just before her 16th birthday, Sydney was introduced to a student filmmaker, Melanie Vi Levy, who expressed interest in creating a short documentary about Sydney. Melanie was in the MFA program at Stanford University. In 2009, her beautiful film, My Name is Sydney, was released, and has since received multiple honors, including being selected as a national finalist for a 2010 Student Academy Award.
“Inspiration is all around us. I love Nature. Trees. Birds. Life opened up for me when I was ten and began communicating. That long-awaited precious gift will inspire me for years and years.”
–Sydney EdmondUnable to find any ready-made letterboards on the market, Lisa at first made her own out of paper, then began experimenting with other materials to make the most effective tool for Sydney. Visit her website, www.Aut2Communicate.com , for more information and various sizes and formats of letterboards, or to purchase Sydney’s book of poetry.
Two Poems by Sydney Edmond
A Long-winded Melody
In my head is a long-winded melody,
It playfully wafts through my mind,
Winding it’s way along pathways
Searching for what it might find.
It may spark a long-ago memory,
And dance upon peals of laughter,
Stopping to dry a falling tear,
And each memory that came after.
Wanting to dance, to spin and to prance,
I pray that the tune will prompt movement,
I readily try lift my arms to the sky,
And to force my poor feet off the pavement.
Wanting the tune, a bright balloon,
To set my body soaring,
To lift on high, my wings to fly,
And let my all be adoring.
The Ocean in Winter
As I linger on a thought
looking out to sea,
I wonder if a little bit
the sea remembers me.
We wallowed in the Summer,
We walked in Spring and Fall.
Winter’s here, and I fear,
It knows me not at all.
It wails upon the shore,
eating up the sand,
angry, loud, and thrashing,
making its demand.
“Walk with fear!” it rumbles.
“Step with loads of care,
or else I’m apt to pull you in
and long you’ll linger there.
Teaming waves will tear at you,
some will hold you down,
laughing at your thrashing
until you’re surely drowned.”
Is this the sea who played with me
beneath a sky of blue;
that tickled at my toes
and lapped my ankles, too?
What is it makes this happen?
I want to understand.
Want my sea that sings to me
to come and take my hand.
And so I’ll wait as patient
as the birds up in the sky
for warm sunny days,
and a sea that plays,
- For more information about Sydney and to purchase her book please visit Aut2Communicate.com
- For more information about Soma Mukhopadhyay and the Rapid Prompting Method visit HALO-Soma.org
- For more information about Darlene Hanson please visit DarleneHanson.com and WAPADH.org
- For more information or to purchase the documentary short My Name is Sydney visit WhistleFilms.com
In addition to writing poetry, Sydney has had articles published in The Autism Perspective magazine, and has given several conference presentations. Awe in Autism thanks Sarah Burge of The Press-Enterprise for introducing us to Lisa. Read Sarah’s article on Sydney.