How long ago did you think of the idea for your book?
The idea evolved over a decade. My mother-in-law made an offhand remark when Sam was still very young that I ought to write a book. The task seemed daunting, but I understood her point that the wisdom needed to be shared. After I participated in some of the earliest online autism forums in the mid 1990s, I began to believe what I’d learned really was helpful to other parents, even professionals. In 2001, during my second year of journalism school, I had enough time to try out my writing muscles. I wrote several essays, began weaving them into chapters, and eventually a story arc emerged that I felt could be a successful narrative.
Has Sam read the book? What does he think of it?
Not very much of it. Sam tells people that the book is about him when he was young. I’ve asked him if he remembers some of the things I’ve written about and he doesn’t.
How long did it take you to actually begin writing once you decided to do it?
Once I began in earnest in 2001, I finished it in 2007. Months went by when I didn’t work on it directly because I was blocked, but I thought about it all the time.
What was the inspiration for the book? Was it therapeutic or did you write it to help other parents?
I wrote the book to help other parents of children with autism, or other challenges, and to help professionals understand what parents go through. That being said, I was not surprised that the process was sometimes therapeutic. Our lives had been chaos. The process of deciding what to write about helped make some sense of what happened. I may not have made all the best choices back then, but every day began with love and that helped me accept some of the mistakes I made.
What made you decide to enter your manuscript in the Mayborn competition? Were you surprised to win the book contract?
I felt like a dark horse winner because I was new to the writing business. I hoped having my manuscript in a workshop would help me figure out how to solve some of its structural and characterization problems. If I knew how to end it, then I could write my way to the finish.
Why did it take so long to publish the book after the manuscript won the Mayborn contest?
It took a long time and a lot of intervention to realize that my initial story arc wasn’t right. Early readers pointed out parts of the story that weren’t satisfying. I struggled to address the different problems they pointed out. The story is a memoir of our lives — and we are still living it! Life is doesn’t lend itself to a tidy story. But I got good help from those early readers and from my editors, Mike Trimble and George Getschow. Mike helped me write with internal logic. George helped me see myself just as much a character in the story as Sam was.
What was the most difficult thing about writing the book?
Early readers complained that the book ended without resolution to the tension in our marriage. It took a long time to figure out how to write about how Mark and I came to understand each other and our different ways of dealing with all the problems we had. I’m grateful that I was able to put that on paper and share several very tender moments with Mark discussing it, since he was killed in a motorcycle accident just before the book went to print. By the way, I hope someday to meet a couple that has resolved all the tension in their marriage.
How emotional was the process of writing the book?
I cried a lot. It was hard to revisit the hurts from the past. I read certain passages to family and to Mark, of course, to check my memory. It was hard to see that it pained them, too.
What is your goal for the book?
To help young families better cope and to help professionals see how they can help. If the book reaches a wider audience, I hope the general public will learn that when one of life’s supposed nightmares becomes your reality, true love and happiness aren’t far away.
What does your husband and family think about the book? Were they supportive in the beginning?
The book has barely been on my family’s radar screen until recently. There’s too much going in our house – the boys learning to drive, for one thing — for the book to be the center of our universe. For me, learning to write it took a long time. The rest of the family wasn’t impacted as much at the beginning, but in the six months before we went to press, it was hard on them.
Now that it’s done, what do you think of the process of writing a book?
I think I know how to do it now, so I might try again and see if I can write one in less than a decade.
Does the book deal with autism from a sibling’s point of view?
No. There are better books on the market for that.
What have you learned about yourself from the process of writing the book?
Lots of people have great stories to tell. But that doesn’t mean you can write it. I was really afraid at several points that the book was poised to fall into the abyss. But I kept the faith and accepted help.
What have you learned about yourself from having an autistic child?
Love. Listen/Observe/Read. Act. Repeat.
What do you think of the new movement to test all children for autism before age 2?
Early diagnosis is key to proper intervention. I included descriptions of my pregnancy and of Sam’s infancy to encourage the autism community to see how far back they can push this envelope to help parents and kids as soon as possible.
What is the best source of inspiration for parents dealing with autism?
It’s in the book – start each day fresh, as if old hurts never happened, and don’t be afraid of your heart, because it will lead you straight into the light.
Do you want to write another book someday?
Yes, but I’m not sure it will be another book about living with autism.
Would you consider writing a book about parenting an adult child with autism?
I’m not sure. We are in pioneering territory right now, with so many adults with autism leaving the school system and entering the working world – or higher education. There’s a lot Sam is dealing with, and figuring out, that could be helpful to people to share. But it’s also my son’s adult life and his story to tell. I’m not sure I can write another book about our lives together without taking something away from him.
Do you think Sam’s story is a fairly typical example of autism? Why or why not?
It’s a universal story about love and acceptance. Every child with autism I’ve known has been unique and wonderful as every “normal” child I’ve known.
Why did you decide to tell this story this way — focusing on this time period specifically and this point of view?
I didn’t want to write too far into Sam’s childhood where he would have memories of his own. Our struggle to get a diagnosis lent itself to a natural story arc as well. The first person point of view seemed the only legitimate way to let the reader into our lives to see the transformation – from ambivalence to confusion to anger to acceptance.
What happened next? Where is Sam today and what role did those early experiences play in shaping the future as it unfolded?
We got over any desire to “fix” Sam pretty quickly. Instead, we helped him adapt. I still bristle when someone suggests he might be better off with medication. He’s learning how to cope. It takes time. The rest of the world needs to be patient. What are we all in a hurry for anyways?