Kathleen Leopold and I have been blogging buddies for over two years now, working on various projects together, struggling to figure out our places in the online autism community as we work in the real world to find our place there, as well, to find the best ways to help both our own children, and other children like ours.
We’ve read several hundred bloggers over the years, and with over 800 bloggers represented on the directory, we’ve read hundreds of stories of how parents have come to face the reality of what autism means not just for their children who are diagnosed on the spectrum, but for the families, as well. We’ve become friends with many adults on the spectrum, learning about how their autism impacts them and how they view the world. We’ve made friends, seen people come and go from the blogging world, and even irritated the occasional person (me way way more than Kathleen ever has).
We’ve witnessed intense anger, deep depression, denial, acceptance, and all the feelings in between in parents as they face the hurdles, struggles, heartache and intense joy and delight in our children that punctuate the difficult times. We’ve warred internally on how to respond to both acts and words that negatively impact individuals on the spectrum, and we’ve tried to figure out where we must act and where we should remain silent.
We’ve erred at times, speaking where silence was the right course of action (me more than Kathleen), and remaining silent where we should have spoken. We’ve been judgmental where we should have shown grace. We’ve been human, in other words, and it’s all been in real time. The blogging world is a reactive world, and sometimes pausing for reflection is not an activity we indulge ourselves in.
Blogs provide current snapshots of moods, feelings, and experiences and the chance for near instantaneous responses to others’ lives. They are monologues and dialogues, attempts to inform, to persuade, to berate, to communicate. Blogging is risky business, especially if you take the time to be raw and honest, especially in our community where we’re dealing with more factions than European politics have. Someone’s always waiting to jump on it and call in their buddies to dogpile (and too many times that’s been me).
Memoirs, on the other hand, offer a look at autism and how it impacts the individual and the family from the vantage point of distance. The writers are looking back, with the benefit of their current wisdom offering the chance to cover up those all-too-human mistakes. Whitewashing has to be a temptation, difficult to resist, a siren’s song to cast oneself as the hero of the story who overcomes all obstacles, never making messy, costly mistakes. So when a writer comes along and offers a memoir, that while tightly crafted and polished to a fine shine, still reveals the messy mistakes we’re all prone to, it’s a surprise. Kerry Cohen, though, has a history of openness and honesty that is raw and real, having authored Loose Girl: A Memoir of Promiscuity. Her new memoir details her journey as mother to Ezra, who has autism, and how coming to grips with this impacts every aspect of her life.
Her memoir is engaging and unapologetic; despite its difficult terrain, it’s easy to read, the text flowing off the page. There is at once a remove, an emotional distance, and an intense emotionality to the work that leaves the reader both pulled in and pushed away, a tug-of-war of emotional rollercoaster rides that many parents of special needs children will intimately recognize.
It’s a tug-of-war that the reader may feel viscerally, as well. Why’s she being so raw? Why’s she revealing the marital issues? The underbelly? Why? And yet, to have whitewashed any part of this story would have been a disservice to the reality that families face. And yet, there are other parts, gaps in the story, that leave the reader with questions.
It shouldn’t take courage to tell the whole emotional story of coming to grips with the reality of parenting a child with special needs. It shouldn’t be going out on a limb to express one’s own emotional and internal reality, and yet it is. All too often it is painting a target on oneself, and so when a writer, a mom, chooses to be this bluntly honest, all of us ought to be able to at least acknowledge that honesty.
Cohen offers that honesty in this memoir and the hurdles in coming to terms with her son’s autism and what it means. And, as she herself notes in her closing chapter, there’s no happy ending, no tidy closing to offer.
Is it inspirational? Not in a sanitized, artificial way. But there’s a takeaway here, even if there’s no happy ending. And with that, I'll turn it over to Kathleen:
I generally don't read books about autism. In the roughly ten years that I have been aware of it, I can honestly say that the amount of books I have read on the topic could be counted on one hand. There are so many reasons for this..but mostly-it's because I have four kids and we have our own story. In the early years with my kids-I was submerged in parenting 24/7..there was no online community-at least for me. I didn't even have a computer. Autism was not as widely known or spoken about as it is today. I had no clue that my oldest sons diagnosis (PDD (nos) ) had anything to do with it. So, when I finally took the plunge and entered the world 'o technology-I was blown away by the many different view points and experiences of other parents. Some I was able to agree with-and others...well, as Kim said..I found myself pissing people off (although DEFINITELY not as much as she has!). In other words, I learned the hard way that my experience was neither better than nor less than anyone else's. That a blog post was just a blog post and not always definitive of who that writer was. That my thoughts and opinions were not always going to be welcome..and most importantly...that sometimes people just want a place to be heard. Sometimes it is our place to just listen.
Having read Loose Girl, which I thought was a very brave and much needed book-I was interested in what the author had to say about her experiences in parenting an autistic child. This was a difficult book for me to read. It brought me back to my early days within the online community. I had to remind myself that this was a memoir-the author's experience. An experience that she fully owns while accepting that other peoples' may differ. I can not criticize a memoir. There were places where I wanted to hug her, places where I thoroughly disagreed with her..places where she made me laugh (her experience with a school in Portland and the teacher whose feelings she hurt cracked me up). It is raw, deeply personal, and it is real. To me, it was a story more about growing up and accepting that there are no givens in life than it was about autism. That happiness and joy are something we have to work for-and that there are no guarantees.
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