Saturday, September 24, 2011

Following Rooster and His Mom Through All Kinds of Weirdness

Dear Book Club,
I feel all kinds of weird about writing to you via this blog post right now.
I feel all kinds of weird. Period.
And I'm questioning if I should write to you like this. I hope you will indulge me in my weirdness, as you so often do.
But writing this blog is how I deal with autism, and dealing with autism is a big, complicated, messy, difficult to explain endeavor, as I think you can imagine from reading our upcoming selection, Following Ezra. I think the author might agree that, when something helps you deal with autism, you just do it, even if it's weird.

I don't know how much it shows, but I struggle over talking about autism with our group; I never want it to invade the single social experience I grant myself as part of my regular life. I never want my struggle to bring the group down, or elicit sympathy, or take any of us away from our escape into books. Book club or elsewhere, I never want it to see like autism is a tragedy for my family, but I never want want to pretend we are typical, either.

I know I already told you this but I can't express fully how joining your group meant -- means -- more to me than you can know, and that is because of autism. It feels to me like all the other places I frequent are autism communities, where my family can be one of the group, and I can swap parenting wisdom and resources with others in the same boat as I am as Rooster's mom. Book club lets me just be who I have always been all my life -- a friend, a talker, and a reader.
And now that we are reading Following Ezra, I don't know another word to describe what it feels like other than weird, which I admit is not such a useful word. So I'm trying to draw a clearer picture right here; how am I doing? No? Not so much?

I guess what I'm trying to convey is that I can't imagine how to talk about Following Ezra, a book about autism and parenting, as the person I've always been all my life, because autism has changed my life, and changed me, so much that in some situations I find it hard to reconcile my before-autism and autism-immersed selves.

At only halfway through reading Following Ezra, the anxiety of trying to imagine how I would talk about this deeply personal story that hits so intensely close to home had me feeling all. kinds. of. weird.

I read, and I pictured the story, and I pictured our next meeting, and I paced a little, and I put the book down. I picked the book up and rode the exercycle and realized my legs were whirring and I could not concentrate and I put the book down and thought about our meeting, and I thought about Ezra, and his life with autism, and I thought about Rooster. And I picked the book up, and I thought about the author, the narrator, the parent of this special boy, and I thought about my husband, then about Ezra's mom, then about me, and finally the only way I could deal with the weird feelings zinging about, the PTSD I am tempted to call it, was to pick up this laptop and write, and what comes out is this letter, my attempt at self-soothing.

My boy, Rooster, is not Ezra, and I am not Ezra's dad, Tom, but this book feels so close to me, my life, my family, my experience, our autism journey, that I find it more imaginable to step inside the pages and arrive at the Los Angeles zoo with Ezra and Tom than I can imagine even something as typical as our next gathering.

I keep hearing in my mind how I have talked about other books in our meetings, both fiction and, like Following Ezra, memoir or nonfiction. I remember with previous books commenting on voices I found interesting or flat, a mother who I feel embarrassed now to say grated a bit on my nerves from how a big a deal she made of some things. Sure I could criticize -- those characters and writers remained strangers.

But how will I talk about these people who feel like my family? That will feel -- well, weird. I am afraid that I hold this book too precious to dissect it without feeling like I am betraying people I have never met but count among a sacred community precious to me. I can't "like" or "dislike" this book, because it is somehow my life; not a story, but testimony.

So I admit I thought about not coming to this meeting of our book club. But I don't want to miss seeing you -- I don't want to miss the event I wait for all month, your good company, the beauty of your community -- and not going likely would just carry over the weirdness until the next time we get together.

So the only way I know to avoid the weirdness of how I might feel when I try to talk about Following Ezra is to plan for the possibility that I might not be able to talk about it when me meet. Though it would be unlike me, it's possible I might only be able to listen! It's not that I don't want to talk with all of you, it's just that I feel overwhelmed at the thought of my emotions in this situation. If you want to know what I think about Following Ezra, I am putting some of my ideas in this post, where I can say it in my best way, in my own time, with the ability to hit backspace and delete as I stumble along.

Following Ezra is an important book about raising a child who has autism. Not any child, not all children, not the full spectrum of kids, but one boy named Ezra. In my opinion, it does not presume to be more, to get political or to speak for anyone, though in many passages I find it telling my own feelings and experiences. It purely resonates. The book is full of simplicity and love, and I treasure that about it.

My favorite part of the book:
When Ezra says, "You are proud of me." My solar plexus ached, and that is all I can say about that.

Parts of the book that felt like I might have written them myself:
p. 3 "a personal journey, beginning in darkness, fascination, love, and ultimately, a sense of awe for our unique, exceptional son."
p. 19 "He's gone."
"p. 24 "One evening, I try to put Ezra to bed one hundred times in a row. And that is just the beginning. The trouble is, I'm following instructions that were written for another kid."
p. 34 "I once understood that having children meant sacrificing some sense of control, but more and more I find myself in situations like the one at the hair salon that seem completely out hand, and beyond my ability to manage."
p. 60-61 "the dismal sense that we might never get this right -- that raising a child with no intuitive social instinct will be treacherous, a minefield with unseen disasters lurking everywhere ... Uncensored, he obsessively points out and comments not just on overweight people, but a laundry list of oddities."
p. 152 "At the movies, he can take in dialogue without anyone expecting him to respond -- and he can play a DVD over and over again until he understands the words and keep listening until he commits the dialogue to memory. That explains why for several years of his childhood it's almost impossible to engage Ezra in dialogue, but he will routinely spout movie lines..."

The part least like my experience, which I found particularly fascinating:
Ezra's amazing memory. The rooster, so far, has shown no remarkable savant skills like that.

When I cried:
The whole bar mitzvah made me cry, because it is so happy.
The hardest parts of the story made me nod my head, and several times I covered in gooseflesh, but I didn't cry until the end of the book as Ezra flourished through the experience of his bar mitzvah. I cried at the beauty, the love, the joy, the community, and I cried because I know that the end of any story like this is an arbitrary thing in a way; there are no real ends, but constantly overlapping spectrums of endings and beginnings in a complicated journey.

What I think of this book: It should be required reading for most of society. The numbers of people affected by autism are vast, and this book offers a testimony that opens people's eyes, whether they are teachers or clerks in a store that sell Homer Simpson dolls, therapists or neighbors, members of a congregation or barbers who encounter people with special needs. Anyone who doesn't think they personally know someone deeply impacted by autism probably is not paying much attention.

Is it a good book? There is simply no way for me to answer that without bias, anymore than I would feel comfortable having my own children in my class and grading their work. Following Ezra wasn't a book club assignment, it was an intimate opportunity for reflection on what motherhood means to me. I didn't read it like a book, I went through it like therapy. And I'm glad I did -- thank you for choosing Following Ezra, because I never would have, and now I am so happy to own a copy.

And in case I have not said it, thank you for letting me join book club. I am so grateful for what it adds to my life.

Wheeew. I am glad I got that all down on my blog. Now I can look forward to our meeting once again. I am feeling fewer kinds of weird now. Maybe just my usual amount.

1 comment:

redheadmomma said...

I think this is wonderful. It shows what happens when our two worlds collide, and it happens to hit really close to home. I admire you for reading it. I think they'd all understand if you said that it was hard to read in many ways because much of it was reliving the past, and please forgive if you listen this time around and don't talk much. They'd totally get that. XOXO