Kathleen 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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