A book went missing in May 2006 when doctors told Lori Taylor that her 15-month-old daughter had autism spectrum disorder. As a capable, motivated parent committed to early intervention, she had books on physical therapy, occupational therapy, developmental therapy, speech therapy and many more. On the inside, she felt grief, alone and compelled to “fix” it. And for that, she couldn’t seem to find the right book. So Lori Taylor wrote it.
“When I walked out the door of the Doctor’s office, I was not the same woman that walked in,” she said.
Taylor, a science teacher of 23 years, said academic intelligence and an outgoing personality are traits she’s always valued in people, and couldn’t help but feel a sense of loss upon hearing the diagnosis.
“I couldn’t see that I was in denial at first, but I wasn’t going to let someone tell me that I was going through the stages of grief,” Taylor said. “I lost my hair. I went to my doctor and he said, ‘Lori, you are chewing rocks in your sleep.’ I would wake my husband up at three o’clock in the morning, knowing that she would never go to I.U., that I would never see her walk down the aisle for graduation.”
Hannah’s neurologist said she could benefit from early intervention services, she remembers.
With the prospect of daily therapy and visits to Riley Hospital, and Taylor a full-time teacher, the family left their home in Fishers and relocated to Avon.
“They say the best window is between ages 2 and 6, and I guess I held myself to that window. I was going to make all these interventions and they were going to make a huge difference for her,” she said.
Taylor went to work getting Hannah support services. Therapy books and papers stacked up and she involved her daughter in everything from aquatic and equine therapy to early education programs like First Steps and developmental preschool.
While there’s no guarantee that early intervention will help children become more neurotypical in terms of school performance, Hannah made strides. Taylor said the Avon teachers were phenomenal. Yet, for a special needs parent, there’s more to the story than just academic performance.
“I was going to find the book about a mom with a daughter with autism who had told her story. I needed to know that someone else was grieving. But not only that, I needed to know how to take my daughter on vacation because she couldn’t step on a line, or stop persephorating on elevator buttons at the hotel, or ride in a taxi because it wasn’t her preferred seat. I needed to know how to do Christmases when my daughter wouldn’t open a gift, and then the motor planning for opening this gift. I searched for it in bookstores but couldn’t find a single one on the shelf.”
In 2014, Taylor resolved to write a “literary archive” from her own experiences. To fund the endeavor, she applied for a Lilly Endowment Grant and became one of 100 educators awarded $10k through Teacher Creativity Fellowships.
Taylor completed her memoir and wanted to see if she could get the book self-published. She attended an event keynoted by Ann Kroeker, a well-connected writing coach from Carmel with 25 years of experience in the publishing industry.
“I told her I’m a single mom I have no money, but what if I emailed you a copy and you just perused it?”
Kroeker said she was taken by Taylor and agreed to read it.
“I could hear it in the tone of her voice,” Kroeker said. “Lori wanted to get her book in the hands of the right people. She was willing to work and has the credentials of not only being a parent with an incredible drive, she’s also an educator. That’s why I could envision this working with her.”
Hannah, 10-years-old at the time, took a special interest in her mother’s book. She asked her mom every day if she had heard back Mrs. Kroeker yet.
“Finally, I heard back from Ann,” Taylor said. “She said, forget self-publishing, you can get picked up by a real publishing company. Hannah said, ‘mom I’ve been praying.’ Right then I turned around to look at her and cried. The pride wasn’t in the book. The pride was in her.”
A hallmark trait associated with autism called “mind-blindness” refers to a difficulty with empathy. But it wasn’t just that Hannah was displaying empathy, at that moment she said she realized it was everything about Hannah that she admired.
“Yes, when I started I was looking for a fix, but in the end, Hannah taught me total acceptance,” Taylor said. “The things that I admire about her the most are her drive, memory, love of animals, she’s a perfectionist, an excellent piano player, witty… All of those hallmark traits that define autism, she has all of them.”
The book, however, was still missing something.
“With her personality and teaching background I felt she could bring something different to the conversation,” Kroeker said. “The memoir elements offer encouragement and make readers feel less alone during an overwhelming time. But I felt she could be a resource, coach and mentor walking beside someone going through this. She grabbed onto that vision and said I can do this.”
Taylor made the book part narrative and part practical guide. She added discussions on intervention strategies, therapies, medical tests, autism terminology, education law, and recommends educational accommodations and supports. Taylor also draws from round-table discussions with parents and offers practical tips on everything from making friends to Sensory Processing Disorder.
“The book is not about a cure or fix for autism. It is about how I can enable parents to help their child be as independent as possible.” Taylor said.
Skyhorse Publishing (New York) sent Lori a contract agreement. Her book, “Dragonfly: A Daughter’s Emergence from Autism: A Practical Guide for Parents” launches April 10. Best-selling author Jennifer O’Toole has written the forward.
Hannah and O’Toole are now friends and exchange text messages. She is currently in the gifted program at her school.
It took Lori Taylor a decade to find her book. Now she hopes to get it into the hands of the parents that need it most.
Dragonfly is available for preorder on Amazon.com.
By Chris Cornwall