F is for following

I’ve been blessed to be friends with Mark for the past twenty-two years. Mark has autism and a seizure disorder yet he rises to every challenge life has thrown his way. He’s smart, funny, loving, creative, and kind. He lives in the now, cares not a whit what others think of him, and walks a unique path which I’ve had the opportunity to walk with him over the years. Mark is a wise soul gifted to an amazing family—who have all taught me the meaning of unconditional love.

Over the years I’ve read and read to Mark many books and my favorite non-fiction stories are insightful accounts written by people with autism or their family members. Following Ezra was a special delight because Ezra’s father discovered and adopted the view that his special needs son was a gift just as he was and didn’t need to be fixed or changed to fit in our world. He embraced Ezra’s world as I have learned to embrace Mark’s and been transformed by my experience.

This book is an inspiration—it’s real, laugh-out-loud-funny while being break-your-heart-touching, following Tom and Ezra has been pure pleasure.

bookExcerpts from Following Ezra by Tom Fields-Meyer
(Tom was told by their family therapist to grieve for the child he (Ezra) didn’t turn out to be.)
“I don’t feel that way,” I say. “I’m not going to grieve.”
I am sure she thinks I’m deluding myself. I know the truth. That one statement has done more good for me than all of the play therapy, than all of the listening, all of the advice. It has forced me to find and bring out something within myself. I feel full of love—for the boy who lines up dinosaurs on the porch, for the child pretending to be Tigger in his bedroom, for the little one I carried and sang to in the first minutes of his life. My answer will never be to mourn. It will be to pour love on my son, to celebrate him, to understand, to support him, and to follow his lead.

Of course, as much as he would like to, Ezra can’t live in a hot tub. And it is difficult to escape what I am coming to understand is one of his foremost challenges: Our son is not comfortable in his own body.

When I repeatedly return Ezra to his bed, I’m not soothing him into drowsiness. He’s being stimulated. What was supposed to get him to sleep is, instead, waking him up. The repetition that would knock out almost any other child is, to him, a tantalizing tonic he has come to crave like a crack addict seeking his fix. …I come to realize something: Ezra has a different kind of mind. The rules that make sense with other children simply don’t work with him.

“Autism doesn’t describe a child,” she says, “It describes a set of symptoms.”
“Imagine that everything we experience is part of a movie,” she says. “In order to see the movie you need to run it through a projector. You and I have a projector, so we can put those frames together and watch the movie.”
“Ezra can’t see that movie. He’s just got a hodgepodge of individual frames. When he tries to run it through the projector, it doesn’t work. It’s all fragmented. He can see an image here, an image there. But he can’t put it all together and make sense of it all.”
“Our job now,” she says, “is to give him the tools to put them together and make sense of the movie—or learn to live with them the way they are.”

“Ezra,” she says, “your mom and dad and I are talking about you. I’m going to be your teacher when you come to your new school!”
He doesn’t respond.
“All the kids are so excited to meet you!”
Shawn and I share a look. It’s become rare for us to see adults talking to Ezra. Most give up quickly when they realize he’s not looking at them and seems lost in his head.
“I’m not sure he can hear you,” Shawn says softly.
“Oh, I know he can,” says Dawn.
“I’m not sure he even understands he’s going to a new school.”
Dawn continues undeterred. “Well, I’ll tell you how I look at it,” she says. “Some teachers figure, Well, you speak Japanese, and I speak English, so there’s no way we can ever communicate. But I want to learn Japanese. I want to learn to speak Ezra’s language and communicate with Ezra, so he’ll let me into his world. That’s what this is all about.”

At some point I realize that is precisely the way to build a relationship with my son: through the trains, the Gumby figures, the endless trail of red (clothes). 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. Instead of lamenting that we can’t have an ordinary conversation with our son about the Dodgers or sitcoms or what happened in school today, we join him. We follow his lead.

Of course, while movie snippets are better than silence, they are hardly real conversations. When we ask his doctor for advice about steering Ezra away from the habit, she suggests simply to label the practice movie talk and discourage it.
“Oh, that’s movie talk,” I say the tenth time he repeats the same line from Cars instead of answering my question. “I don’t want to hear movie talk. I want to hear Ezra talk.”
Sometimes that works. Sometimes it frustrates him. Sometimes he catches himself in midsentence,” Oh that’s movie talk. You don’t want to hear that?” he says, half asking.


This entry was written by Laura and published on May 23, 2014 at 8:00 am. It’s filed under Books, Connections, Friendship, Gratitude, Inspiration, Just for fun, Laura, Lifeology, Relationships. Bookmark the permalink. Follow any comments here with the RSS feed for this post.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: