August 2012 / Av 5773
“Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from his Extraordinary Son,” is a moving and eye-opening journey into the world of a family coming to grips with what it means to have a child with autism. One of the blurbs on the book cover says , “Anyone who is raising a child with special needs should read Following Ezra.” I would amend that to read ” Anyone who is raising a child or teaching a child, should read this book.”
If we hold to the truth of the Talmudic text (Mishnah, Sanhedrin 4,5) that teaches us one aspect of God’s greatness is that unlike a ruler of flesh and blood whose many minted coins are identical, God has made humans all from the original ” coin” (Adam and Eve) but never have any two been alike. It is not a stretch to understand that we are each unique. Each of us has special needs in one way or another. Sometimes it is easy to see the uniqueness in the other and to value it. Sometimes that uniqueness is SO “in our faces,” so special, so distracting, that we struggle to find the human person hidden within.
Tom Fields-Meyer sets himself the challenge of finding his son, Ezra, hidden within the cloak of unique and puzzling behaviors. In doing so he accomplishes two things for us, his readers. He tells a compelling story of how he follows Ezra’s lead and comes to understand much of what makes him Ezra. At the same time, he sets an example of stellar parenting which we (parents and/or teachers) can learn from if we can follow the kids in our lives, taking a stance of curiosity toward their uniqueness.
What is this behavior, that seems so odd to me, all about? What does it do for him/her? What is he/she seeking, needing? Can I be thankful and appreciative of these special talents or am I too judgmental, embarrassed, overwhelmed? Can I really FOLLOW my child/student or am too insistent that he/she follow my lead?
Following Ezra’s succession of obsessions ( from Muppets, to Gumby to Thomas and on ) Tom and his wife come to realize ” that is precisely the way to build a relationship with my son…instead of seeing his obsessions as traits to change, Shawn and I come to view them as opportunities to build a bond– a quirky, unpredictable, whimsical bond to be sure, but a strong one.” (p 111)
Tom holds fast to the belief that Ezra has more thoughts than are expressed in the constant repetitions which characterize his usual speech. He hits upon creating the possibility of a real conversation by linking Ezra’s current intense obsession ( a trip to the Disney Store) with his nascent interest in the computer–and it works (in a minor way at first and then with more fluidity). Tom compares his own feelings at this break through to the famous “water” scene in “The Miracle Worker. “(ch 8)
He learns to share Ezra’s many and varied passions. He writes of Ezra’s enthusiasm for the first day of each month, “His enthusiasm is easy to share, and we revel along with him.” (p 127)
As Ezra moves on to memorizing birthdays, release dates of animated movies as well as their running times, Tom reflects not on the oddness of Ezra’s interests but on how well his memory serves his unique needs. “Ezra craves the concrete. He has a deep need for structure, for things that won ‘t change…The world is in constant flux, but the Toy Story DVD will always be eighty minutes long and the numbers on his grandmother’s door will never change.” ( p 138)
I once read that if you know one child with autism — you only know one child with autism. Much of what you see or come to understand about one child with autism will not help you understand the next child with autism you meet. So in reading this book we come to know only Ezra (although you may see some familiar traits and behaviors) but what we can come to acquire, to the extent we can learn from Tom, is a set of tools for inquiry into the children we come in contact with daily, both autistic and neuro-typical. Be curious!
One “post-script ” I feel I must add is that Ezra and his family enjoy a supportive Jewish community in terms of a summer camp experience as well as belonging to a synagogue community that offers Ezra a weekly class, a Shabbat experience, and a Bar Mitzvah that fits him. Would your synagogue?
If you are interested in further reading on this topic, I recommend these books :
“Now I Can See the Moon,” by Elaine Hall; “Buzz” by Katherine Ellison, both of which record adventures in parenting kids with special needs written by mothers ( both Jewish); “My Baby Rides the Short Bus‘” edited by Yantra Bertelli, Jennifer Silverman and Sarah Talbot, is an anthology of short articles by parents whose kids exhibit a very wide variety of special needs; ” Far from the Tree,” by Andrew Sullivan, an amazing book about the struggles of parents to connect with children so different from them that any identification or connection is difficult. Chapter 5 is about autism, but read the whole book. And, last but not least, “The Autistic Brain,” by Temple Grandin, which is a close look at Autism with the help of what neuroscience has helped to illuminate. Very accessible, despite it’s scientific lingo. It makes a gr eat parallel read to “Following Ezra.”