The task of writing and publishing a book is tremendous on its own, but imagine reaching this milestone while living with autism, which can hinder overall expression, or Lou Gehrig’s Disease, which causes the death of neurons controlling voluntary muscles. In this story, we profile three local authors, including two children, who have done the remarkable — writing and publishing books to tell their stories — with the end goal to educate, enlighten and inspire their readers.
Anatomy of Autism
Diagnosed with autism at age 2, Diego Peña is unable to speak, but found a way to express himself at age 3 when his mom gave him an iPad. Using a laminated letter board and a wireless keyboard connected to his iPad, he wrote Anatomy of Autism: A Pocket Guide for Educators, Parents, and Students.
“The book is about the world around people with autism like myself, the challenges we face on an everyday basis, and the amazing things us non-speakers are capable of accomplishing,” the 11-year-old of Camarillo wrote for this interview. “It’s also about my unique experiences, my mom’s help, and some of my humor is also included.”
The inspiration behind writing his book started with a third-grade class assignment, in which he was asked to write about his life with autism, and involved creating an outline, table of contents and chapters. From there, “my teacher suggested that I turn my assignment into a book and publish it.”
It took Diego about four months to write his book, which he noted was “way too long but totally worth the time,” adding, “I keep writing to this day.” The biggest challenges he faced were “keeping my body still to type, to maintain confident, and I made writing mistakes along the way.”
In Diego’s short time on this planet, he has won several awards and accolades, including the United States President’s Education Award for Outstanding Academic Excellence in 2019 and a $300 Gifted and Talented Education Tri-County grant in 2017. This year, he was also a Reflections Contest Essay Ventura County award winner. He has also given presentations about his book to the Ventura College Early Childhood Education class, at the Ventura College Diversity Festival and the University of San Francisco doctoral student class.
It wasn’t until Diego had access to a multi-modal system of communication, using a symbol-based communication app, a letter board and a keyboard, that his parents understood the depth of his intelligence, said his mom, Edlyn Vallejo Peña, director and co-founder of the Autism and Communication Center at California Lutheran University in Thousand Oaks.
“We had hints here and there about his gift in writing when he typed out his essays,” she said. “But in second grade, he took more formal assessments that lasted about three weeks to complete. The school psychologist called me and reported that he was in the 17-year-old age range for writing and English language arts.”
Edlyn admitted it was really hard to digest that information at first: How could a nonspeaking 8-year-old reach that magnitude of intelligence at such a young age?
“I was elated but I was also anxious to learn this,” she said. “I questioned how I could possibly nurture and support the intellectual growth of a child who had high support needs with his communication, social interactions, sensory processing and emotional regulation while at the same time being as brilliant as he is.”
Thankfully, the teachers and school administrators at his elementary school, Rancho Rosal Elementary, saw Diego for who he was. “Despite the days in which he had difficulty regulating his body or emotions, they never once doubted his academic potential. They provided the necessary supports and accommodations tailored to his needs.”
Without these supports, Diego would be relegated to silence with no augmentative and alternative communication and no inclusion in general education, Edlyn further emphasized. “It brings me to tears knowing that the village around Diego has supported him unconditionally.”
When Diego published the book, he never imaged that it would be a No. 1 bestseller on Amazon within 24 hours of publication. Since then, it has sold nearly 4,000 copies.
“Not only did access to augmentative and alternative communication make this possible, but now I am certain he can be educationally successful,” Diego’s mom said.
Next year, Diego will be in honors classes in middle school, and his one-on-one communication partner will accompany him. He will fully participate in class discussions and assignments because of his letter board, keyboard and iPad.
“Diego’s mentor and ‘big brother,’ Samuel Capozzi, communicates the same way as Diego,” said Edlyn, adding that Capozzi is a college student at CSUCI, and because of him, “we know that college is possible for Diego.”
Diego is currently in the process of writing his second book, The Supporters in My Life, about his relationships within his autism circle. As far as his future is concerned, “the career I am thinking to pursue is in the writing business … it doesn’t matter as long as I am writing.”
Diego’s book can be purchased at Amazon.com. His author’s page can be found on Facebook at www.facebook.com/DiegoPenaWrites. To communicate with Diego directly, email him at DiegoPenaWrites@gmail.com.
One Blink at a Time
Living with Amyotrophic Lateral Sclerosis for three decades, Ismail Tsieprati lost his ability to move and speak and even breathe on his own. But this affliction, also known as Lou Gehrig’s Disease, has not stolen his determination to live a happy and productive life, nor has it hindered him from writing One Blink at a Time.
The Simi Valley man, who spelled out his chapters using eye blinks, letter by letter, word by word, wanted to show in this book “that I am living a happy and productive life in spite of my challenges. I hope to give other people in situations like mine encouragement and hope.”
It took him and his wife, Cheryl, a couple of years to write One Blink at a Time, which, in addition to sharing their personal stories, contains information and resources that can be helpful to other people living with disabilities.
“The technology I used to write this book was very low-tech — no machines or software needed!” Tsieprati, 84, wrote via this method for this interview.
“I communicate with eye blink, spelling out words by blinking to select alphabet letters that Cheryl and my other caregivers call out one at a time from a chart that consists of numbered rows of letters,” he wrote. “I build words, then sentences, then paragraphs this way. It’s a slow process, but it works for us. Since we have all memorized the chart, we have no special equipment to set up or carry around with us.”
For his book, “I wrote my chapters by spelling out each word to Cheryl in this way. Cheryl wrote down every letter and then read my chapter back to me. I made whatever changes I wanted and then Cheryl typed up what I wrote. When she read the typed chapter back to me, I would sometimes make additional edits until I was happy with the chapter.”
Communication, and the difficulties of spelling out each word with eye blinks, “was probably my biggest challenge in writing this book,” he noted. “When I get tired, it becomes harder for me to blink my eye. … Sometimes, it took me all day to spell out a single page.”
Cheryl and Ismail have been talking about writing another book about the road trip they took to the Grand Canyon last September. “It was the first time either of us had been to the Grand Canyon, and it was an adventure that was filled with fun and unexpected challenges,” he remembered, adding, “Cheryl and I and my caregivers learned a lot that could be helpful to others with special needs who would like to travel.”
When he’s not busy traveling or writing, he loves being an advocate and participating in The ALS Association’s Walks to Defeat ALS in Ventura and Los Angeles every year, and was proud to be honored as one of two recipients of the 2017 Walk Hero Award for the 14th Annual Ventura/Santa Barbara County Walk to Defeat ALS.
“Because scientists have not been able to get enough funding for research to find a cure for ALS and there needs to be more press coverage about this horrible disease, people have misunderstandings about ALS,” Ismail wrote. “I think one of the biggest myths/misunderstandings is that anyone with ALS will die within 3-5 years of diagnosis.”
The reality is that some people can live longer, “in rare cases like mine, many years longer,” he continued, adding that according to the ALS Association Golden West Chapter, 10 percent of people with ALS live 10 years and 5 percent live 20 years or more. “In rare cases like mine, a person with ALS can live over 30 years. I am fortunate to get excellent care every day by a team of great nurses and have a wife who makes daily life pleasant and worth living.”
Another misunderstanding is that people with ALS will have a poor quality of life on a ventilator.
“I have been living on a ventilator for close to 30 years, and Cheryl and I are both happy with the quality of our lives,” he noted.
As far as One Blink at a Time is concerned, “I hope this book is helpful and informative for other people in situations such as mine and will give them encouragement and hope. My goal is also to educate the general public about this deadly disease, ALS.”
A Twelve Year Old’s Memoir
Autism Over the Years: A Twelve Year Old’s Memoir is about the experiences of Micaela Ellis growing up as a person with autism and overcoming many learning and social challenges associated with autism.
In her book, the Oxnard girl, who is now 13, explains different situations from her perspective, and shares what she was thinking when she did things that looked strange to other people, with the goal to “put an end to the idea that autism is a disease that needs a cure. I want to put an end to autism being a taboo subject.”
She was inspired to write a memoir at age 11 after reading Ugly by Robert Hoge, which is about his challenges growing up being labeled as “ugly” because of his facial deformities and prosthetic legs. After reading his book, she thought, “Ooooh, I could be famous if I wrote a memoir.”
In the fall of sixth grade, with daydreams about being famous, she started writing after school on a laptop, pouring her thoughts out, and kept on writing when she got home from school. She had about six chapters started when she decided to work on her memoir for her interim semester project at school. She had six weeks to research and work on a project that covers multiple disciplines. With that, “I chose autism as my topic and I covered the disciplines of language arts and art by writing and illustrating my memoir.”
When the first draft was finished, “my mom thought it was so good that it deserved a professional cover instead of just the hokey school picture and font we had been using,” Micaela remembered. That’s when a graphic designer came up with the idea to capture a picture over her shoulder, “like looking at the world through my eyes.” Her mom then obtained an ISBN, the assigned number required to publish a book, and spent a week of long nights editing before uploading Micaela’s book to Create Space on Amazon.
“When the first proofing copy came, it felt amazing,” Micaela recalled. Looking back, “The biggest challenges I faced … were focusing on writing and editing while also managing everything else in my life, such as social stuff, academics and extracurricular activities.”
Micaela’s journey, from being diagnosed with autism at age 2-and-a-half to the current day, “has been a blessing for our family to witness and share in,” said her father, Jon Ellis. “Reading about her experiences, from her perspective, is … eye opening and powerful.” In sharing Micaela’s story, he and his wife, Gloria Jones Ellis, “hope to create conversations that will have a positive impact and will help parents and educators who support individuals with autism.”
A stereotype about autism that bothers Micaela is the idea that autistic people don’t feel emotions.
“We feel emotions, but sometimes, we don’t know how to express them,” explained the teen, who recently finished seventh grade at the Lighthouse School of Ojai, a private school that’s part of her mom’s educational therapy clinic. “When I was younger, it was difficult to express negative emotions, such as sadness and anger, the typical way, so that is why I seemed emotionless.”
Also, some people think that kids with autism only want to be alone and don’t want to be around other people, which “I don’t think this is true. I think many autistic people want friends and are just unsure of how to make friends. Because making friends can be difficult, it is sometimes easier to be alone.”
Micaela noted that another stereotype that bothers her is that vaccinations cause autism and that autism needs a cure.
“I believe that autism develops before you are born and that there isn’t a cure for autism,” she said. “Also, a lot of people in the autistic community don’t want a cure for autism, they just want to be accepted as they are. I don’t think autism needs a cure, I think only society’s thinking needs a cure.”
Micaela’s book can be purchased on Amazon.com. She will give a presentation about her book and living with autism from 1 to 2:30 on July 27 at the Avenue Library, 606 N. Ventura Ave. in Ventura. She will also speak from noon to 1:30 p.m. on Aug. 18 at the Hill Road Library, 1070 S. Hill Road in Ventura.