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Wednesday 22 Nov 2017

Following Ezra: An Interview with the Author

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A while back, Tom Fields-Meyer came to Phoenix to speak about his book Following Ezra. I had read many glowing reviews about the book but had not yet had the time to read it personally. After his talk I had the pleasure of speaking with him about his motivation for writing this book and his advice to parents. We spent nearly an hour talking, after which I raced home to read his book.

Before I share bits of our conversation and my take-homes from this wonderful book with the Autism Community I want to say thank you to Tom for taking the time to speak with me personally and for sharing his story with the world. His perspective on life and raising a child with autism is definitely worth sharing with anyone who’s life is touched by autism.

If you go online and search for books written by parents about their experiences raising a child with autism, you are likely to find hundreds of books which fall into one of these categories: melancholy books about the tragedy of having a child with autism or joyful books about eradicating their child’s autism. My opinion is that neither of these types of books are good for the autism community because they are both likely to cause further pain and resentment rather than building up the parents or empowering them in some way.

Books describing autism as a tragedy might cause parents to continue feeling sad about their child’s diagnosis, have low expectations, or in some other way negatively impact the relationship between the parents and the child. Books describing how one family “cured” their child of autism might lead parents down a road of trying everything that person tried, with no concern for the potential costs, and end up feeling like they failed because their child wasn’t cured.

Following Ezra is different. It does not fall into either of these categories. This book is about love, acceptance, finding joy in you child, striving to understand your child and always having high expectations. When I asked Tom why he decided to write this book, this is what he told me:

“When Ezra was 3-4 years old there was no book that had kind of a positive message that said “well your life is going to be a little bit different but it will be okay” they all just made a book like this is the worst thing that could ever happen to you and here are some options but there’s really no hope for your child. So, I didn’t want to write a book about looking to fix him I just wanted to write about what it’s like so that maybe people with younger children could read it and see that you can have a full life and even a much more interesting life than you would have otherwise with a child like this.”

This message is pervasive throughout the book. In every chapter Tom describes, in great detail, his experiences with his son and while nothing in his description makes it sound as though he has it easy as a father there is always a sense of joy and discovery. No matter how frustrating, anxiety-provoking or embarrassing a situation is, he always finds a way to learn something about his son from the situation and he uses that to help him understand and teach his son. This is such a powerful message for parents. It is not easy to take a step back, look at your child and their behaviors, figure out why they may be doing what they’re doing, and find joy in this discovery.

In the book Tom describes his son’s past and present obsessions and how these have lead to a greater understanding of his son, what makes him happy and how these have been used to develop deeper connections with his son. He also shared during our conversation that while he wanted to express in the book how extraordinary his son is and how much joy he finds in his son he still wanted to ensure he clearly conveyed that his son still has autism. He shared a story to illustrate this about Ezra having a meltdown in a department store while preparing for his Bar Mitzvah. He concluded his story by telling me “there are still challenges all the time. There’s hope and things get better but there are no miracle cures and you, as a parent, learn how to cope with that.”

In my practice, I have worked with some parents who have difficulty coping with the diagnosis. This tends to impact their relationship with their child which in turn impacts progress. When I spoke with Tom about this, he said that he thinks “it can be really hard when the child is young. [Grief] is a natural reaction and a lot of parents have to go through a period like that in order to then accept the child. You have to get that past you. Parents, I think, get stuck. Where a lot of parents get stuck is they’re just thinking about the diagnosis and the treatment and the therapy and the medication.”

I definitely agree with him on this point. Parents I’ve worked with sometimes do get stuck fretting about these things and forget that their child is still just a child who needs love, acceptance, support and guidance. He made a suggestion to help professionals help parents out of this cycle by showing them a breakthrough moment. He believes that “if you can show them some small evidence that you’re breaking through that can make a huge difference.” Noticing and celebrating even the smallest of breakthroughs is something that Tom and his wife do often, and he believes teaching and encouraging parents to do this can be very helpful.

This book is definitely on my list of recommended readings for parents. It’s not a book about the woes of autism or a prescription for a magic bullet; it’s about the real life of a man raising a child with autism. It’s about finding joy in the small things and celebrating all successes. It’s about loving your child for who they are and guiding them along their path. It’s about accepting everything about your child and still expecting greatness. Tom has done an excellent job conveying his message to his readers, and his book will be a wonderful addition to bookshelves of those touched by autism around the world and across the years.

Description (from the publisher)
When his son Ezra was diagnosed with autism, Tom Fields-Meyer knew little about parenting and even less about neurological disorders. Faced with statistics from the Center for Disease Control citing autism as the fastest growing developmental disability in the U.S. with 1 in every 110 children developing autism-spectrum disorders, Tom sprang into action. At first he saw Ezra’s struggle as a challenge he could resolve—if only he and his wife did the right research, found the smartest experts and arranged for the best therapy. Tom and his wife Shawn were determined to connect with their son, but pushing him to improve seemed to only push him away.

It was one day in therapy that changed everything for Tom. He watched his wife, a Rabbi, teacher and wonderful communicator, questioning if she would ever get though to her son and the therapist replied “you have to allow yourself to grieve…for the child he didn’t turn out to be.” Tom thought about this and finally realized that he didn’t feel that way. He had never had a preconceived notion of who his child would be so he decided he was not going to grieve. And that’s when everything changed. No longer was theirs a common story of the struggle to “make it” with an autistic child. Rather, Tom took a step back and decided to simply wait, watch and see where Ezra led.

FOLLOWING EZRA: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son by Tom Fields-Meyer is an intimate memoir chronicling his remarkable experience of learning and growth from the time Ezra was diagnosed at age three to his bar mitzvah at thirteen. In that time, Ezra evolves from a remote, peculiar toddler to an extraordinary young man, not “cured,” but connected—in his own unique way—to the world around him. Meanwhile, his father travels from darkness and bewilderment at the diagnosis to a place of awe and wonder for his son. Full of hilarious stories and touching moments, FOLLOWING EZRA is a testament to the power of humor and love to overcome obstacles and bind a family. Tom Fields-Meyer’s story is unique because his perspective is so unusual. This is a memoir, but also a love story between father and son. Although this is a book about raising an autistic son, more than anything it is a story about raising a child, being a parent and discovering what you can find when you look at the world in a new way.

FOLLOWING EZRA focuses not on an illness but a relationship, celebrating the rich, textured life that emerges from a father’s choice to embrace, love and follow his unique son. Today, Ezra is 15 years old and about to become a published author himself. He co-wrote a children’s book to be published this fall. Ezra is a testament to what amazing things even the most unusual child can do with the love and support of a family willing to let him lead the way.

About the Author (from the publisher)
Tom Fields-Meyer has been a writer and journalist for more than 25 years. He spent twelve years at People magazine as an associate editor and senior writer, specializing in human-interest stories and profiles of newsmakers. Previously, he worked as a news reporter and feature writer for the Dallas Morning News and was a senior editor at the Chronicle of Higher Education. A graduate of Harvard College, Fields-Meyer lives in Los Angeles with his wife, Rabbi Shawn Fields-Meyer, and their three sons.

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