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Review: A Cup of Comfort for Parents of Children with Autism

  • Posted on July 18, 2012 at 4:19 PM

I received an unexpected package a while back.  One day I went into class and a box was waiting for me, care of my graduate school advisor.  Inside were two books and a card.  Apparently, my advisor had talked with a former student and I came up in the conversation.  The former student, who is also the mother of a child with autism, sent me two collections in which her writing on her experiences raising a child with autism had appeared.

A Cup of Comfort for Parents of Children with Autism, edited by Colleen Sell, and published in 2007, was one of the two books.  Mostly, the writer was trying to make a connection—and she succeeded.  I’m reviewing the book because it’s just part of what I do.

First, though, I must caution my readers.  I don’t review a whole lot of memoirs and have yet to review an essay collection on this site, mostly because I avoid them.  Early on in this beautiful mess, I received (and purchased) many memoirs.  Most of the stories were dark, degrading, desperate attempts to find a cure for their child’s autism—some even claiming to have succeeded.  I got jaded on memoirs like that pretty fast.

So, when making any kind of recommendation, especially when a book promises “Stories of Hope and Everyday Success,” part of what I’m looking for is a break from this effort to capitalize on the darkest possible view of autism.  I strongly prefer books that challenge the preconceived notion that autism is some horrible thing that is done to unwitting families—a malignant force.  In my experience, prejudice and stigma is the much stronger, much more pervasive malignant force.

I started with the writer’s story, of course, and responded to her.  (You can find Leaving Literalville on page 176, and it’s a very good essay, highly recommended.)  I have since gone back and read the whole thing.

I was pleasantly surprised by how well the promise of this book was fulfilled.  Most of the stories were written by parents who had come to see the value and worth of their children, and had either always cherished them just as they were or had come to do so.  Of course, there were a painful few who boldly claimed they still needed to cure their children—and that seems to rather discredit their claims of acceptance and value, but, then again, it’s impossible to know whether these parents have thought about what that cure might cost their child.

What should a reader get from such a book?  Tears, smiles, laughter, joy, a sense of renewed hope and a feeling that accomplishments are possible.  Yup—it’s all there.  Most of the stories were fresh and compelling.  A few dragged.  A few seemed like the writers’ were trying to force what they really wanted to write about within the confines of the anthology’s objective.  But, mostly, I would say the book was a success.  A few stories surprised me.  Others made me wonder.  Overall, I found most of them familiar and uplifting—or at least not depressing.

One of the things I really and truly love about this piece, however, is the wide selection of points of view represented.  It seems most of us gravitate towards those we agree with, and there are some pretty compelling reasons for that, but in order to grow we need to be challenged.  We need to look at things through different eyes, at least for a while.  That, of course, doesn’t mean we don’t have to like what we see.  We don’t have to get comfortable in that point of view.  But the people we disagree with deserve to be heard, too, and maybe if we all did more listening (or, in this case, reading) we’d be able to work together much, much better.  Imagine what we could accomplish then!

A Vision for the Future

  • Posted on December 5, 2011 at 8:00 AM

Lines are drawn in the sand. A community of interested, active participants is divided and shattered into ineffectual bits and pieces. People who care, who are knowledgeable, who mean well, who are willing to work for change…people who should work together butt their heads against each other, wasting their energy on each other, arguing with CAPS, shouting across picket lines, reveling in the damage done to the other side. As these divisions are formed, it seems we are drawn to dichotomies. However much we know there are many sides, many points of view, and much room for both agreement and disagreement; we inevitably boil it all down to “us” or “them.” And those who wield the power go on their merry ways, sacrificing the welfare of the many for the profit of the few, with no concerted effort to thwart them.

The environment is discouragingly familiar. I find it sad and disappointing that I could be describing the autism community. You see, I left that environment years ago when I left the political blogosphere. I was tired of watching the citizens that make up this democracy turn on each other while those who held power exercised it with impunity. While there are legitimate debates between conservatives and liberals, and all the mid-points in-between, I couldn’t stand watching either side defend their dirty politicians as if their talking-points were motivated by anything other than political self-interest. (Full disclosure: I was party to such behavior early in my foray into politics; it was listening to other “sides” that helped me to see what was going on and it was my affinity for “the big picture” that made it clear that positive change wouldn’t come out of such dialogues.)

I didn’t expect that scene to be replayed in the autism community. I didn’t expect to see the different sides within that community turn on each other with such force that it risked grinding the forward motion of the community to a halt. Yet, I see it happening.

Sure, there’ve been disagreements from the beginning. There have been sides. Some could be dismissed as fringy quacks. Others were in natural opposition. But lately it seems there is less and less reasonable discourse and discussion among those who used to be capable of it. Instead, we get vicious diatribes. There doesn’t seem to be much room any more to speak and be heard by anyone who doesn’t already agree with you. While self-advocates and parent-advocates are duking it out, those with power go along their merry way.

I close my eyes and think about Gifford and the horrible days that followed her shooting. I think about how each side, pretty much ignoring what happened, turned on each other. I think about the recent snafu involving a Republican something-or-other distributing an image of President Obama as a zombie with a bullet through the head. I think about the verbal attacks that followed. I’m not a Gifford fan. Nor am I an Obama fan. I’m just a citizen who wants the middle ground to have a voice, too; a citizen who would rather work to fix what’s wrong with this country than argue who is to blame for its unavoidable ruin.

I close my eyes and try to imagine the autism community reaching the same caustic point. I wish I could say it was unimaginable, but the way we’re going…it’s not. I can close my eyes (and without the benefit of mental pictures) see just how far astray this community could go.

I left the political blogosphere because I couldn’t stand what I was seeing. I’ve “spoken” with several people in the autism blogosphere who are considering doing the same. With all due respect to what they were trying to do, the people who are calling that recent “dialogue” snafu a success have closed their minds to the terrible consequences of their poor judgment. Diatribes and personal attacks are not steps towards productive discourse. For many, that was a last straw. They’ve opted out of such “discussions.” Now, if their voices are heard online at all, it will only be by those who are deemed “safe.” If that’s a victory, then we all might as well pack our metaphorical bags and go home, because if fractures like that continue to be hailed as victories, the autism community will shatter.

I, for one, don’t want to see that happen.

Time is against me. I have an idea. But it has to be done right. I need resources I don’t have. I need collaborators and contributors. I need time. My conservative estimate is that I will need eighteen months to get everything into place in order to launch my idea to the public. A lot could happen in eighteen months. Voices may be lost. Irreconcilable differences may be formed. The autism community could easily shatter in eighteen months.

But I can’t walk away this time. I have to try. And I need to hurry.