Friday, October 7, 2011

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Seeing Ezra~ a book review

I had the opportunity to review Seeing Ezra: A Mother's story of Autism, Unconditional Love, and The Meaning of Normal by Kerry Cohen. I was so impressed with this book; a real, honest glimpse into the process of one parent's journey in finding out her child is on the autism spectrum, and all the therapies, meetings, and emotions that came with it in the years following.

I had the pleasure of a Q&A session with the author after reading the book. She's funny, she's understanding, and she's smart. I emailed questions to her through her publisher, after a couple of nights of little to no sleep (love that no-sleep cycle, Logan!), and she was wonderful about it, even though a couple of the questions weren't real clear. Okay... they were absolutely nonsensical, but she answered them beautifully. You can read the Q&A below:

Why did you feel the need to write about Ezra?

As a memoir writer, this is how I get through the hard stuff, and while Ezra himself is not "hard," the emotions that came along with having an autistic child have been. Partly, writing helps me understand what I feel, helps me figure out the truth about things. More so, though, writing about my life gives meaning to it. Other people have religion to make sense of why things happen to them. I don't subscribe to any institutional religion. I do, however, believe in narrative. I believe in form. If I can create design with my life, give it a shape, then I can feel some meaning inside it. It saves me. 

I love how you state at the beginning of your book that you use "autistic" as an adjective for Ezra, much as you would use "boy" or "blond", rather than letting autistic define "Ezra". How do you inform people that Ezra has autism, autism doesn't have Ezra?

I just tell them outright. I use the word "autistic," and I've explained it to his sibling and future step-siblings that it's not a disease, and so he doesn't have it. It's a part of who he is - neither great nor terrible.

What would your advice to educators/therapists/doctors/early intervention workers who work with children with autism be, based on your experiences with Ezra and finding his services lacking?

I would encourage anyone working with special needs kids to recognize first and foremost that these are just children - like you said in your review, they need to be loved and respected and admired for who they are, perhaps more than they need the therapies. Also, I'd encourage them to stay removed from their training, to some extent. Don't believe in it wholeheartedly. Stay skeptical of the therapies, but not the kids. Finally, trust the parents to know better than you who their children are. And don't believe in this idea that parents get into "denial." That's crap. They have their own processes, and they deserve respect for those journeys - it's not denial. It's being human.

"The Spectrum" of autism disorders is wide. There are those who have expressed concern that spectrum disorders are over diagnosed when a child has developmental delays, and that these diagnosis are inappropriate. Do you agree? Do you think that autism is becoming a diagnosis du jour as ADHD once was?

Oh yes, I think it was for a while. I think we've moved on to bipolar will be something else. I think the issue is less about overdiagnosing and more about the fact that we know so little about autism. It's not a "thing," not something you can examine in a brain, like Alzheimer's or schizophrenia. It's a constellation of symptoms. That's all we know. So, its origins could be from multiple things for multiple people. And what will happen with how those constellations will change, or not, is individual to each person. I'm okay with the diagnosis of PDD-NOS or autism spectrum because it's all we have at the moment, but I do think our treatment of how it's portrayed to the public needs to change. Autism Speaks, for instance, has this notion set up through their organization that autism is a terrible tragedy. Meanwhile, we don't even know what autism is! And, for many people it is most certainly NOT a tragedy. The only tragedy, many autistic adults have told me, is being called a tragedy. 

How do you deal with people who insist on a ""cause" for autism, whether it be vaccines, a need for chelation, diet, or genetic? Do you think it's counter productive to focus on cause/cure rather than the specific needs of each individual child?

Yes, I do think it's counterproductive. I get it - like all disabilities, people want to know what causes it so they can prevent it (although "preventing" it may be a pointless endeavor if it's caused by some combo of genetics and environment...we're not going to be able to reverse the effects of pollution or whatnot.) But all the hoopla that the anti-vaccine/autism-is-caused-by-vaccinations proponents put forth is truly dangerous. We don't know what causes autism. We hardly know what it "is," so it's terribly irresponsible for these people to do what they do (I'm looking at you, Jenny McCarthy). When people tell ME about some woo woo thing I should do to "help" my son, I tell them I don't buy that shit and that he's getting great, evidence-based support at his school. Whatevs with them, you know? I don't let them bother me anymore.

There was a lot of frustration in your book with those who offered unsolicited advice. In your opinion, what would be more beneficial to a parent who has discovered their child has autism? (i.e. support groups, taking cues from the parent of the child. etc)

Ha! This is a great question. God forbid I actually offer solutions in my book rather than complain all the time :) I'm a Jew - it's my birthright. I guess it would be way more beneficial to offer to support parents in what they want at that time. Or, offer to babysit! That always helps.

When I started researching for autism for my son Logan, I would stay up until 3am every night, looking for answers, diets, therapies, anything that would help him learn to walk and talk. The amount of information online is overwhelming, and I found I would have to take breaks from research. Sometimes it was an hour, sometimes it was two weeks. I didn't want to lose my child in the face of my research. Have you ever reached your saturation point and had to stop for a while?

I can certainly say I haven't looked up anything autism-related online in ages. It's such a relief when you reach that point where you feel like he's getting what he needs for now. I don't have to struggle anymore in the ways I described in the book concerning whether I thought I was doing enough or too much for Ezra. A great example -- my good friend Julie (the one I write about in the book) was over yesterday with her kids. She said her autistic one has been much more obsessive lately, and we agreed that they go through phases where they get more obsessive, how ages ago we would freak out and try to figure out why and what we needed to do to omg-stop-his-regression-into-autism! So ridiculous. I said, "Yeah, because it's not like anything is going to actually affect whatever phase they're in." And she said, "And who cares if it doesn't anyway?" I love that we have reached this point in our lives with our sons. We accept them, yes, but also we accept the ways in which autism is out of our control. It's a beautiful thing.

Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal is available through Seal Press for $25.00

Seeing Ezra image is the property of  Seal Press and is used here for purposes of this review ONLY.

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