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Dec 01 2013

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BigCalfGuy Book Club November: Carly’s Voice (Nov ’13)

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This book was recommended to me by my friend Dawn Pray.  She had heard about it and wanted to read it.  At the time of the recommendation, she hadn’t even read it.  It did look interesting, so I decided to use it for November’s Book Club.

I’m glad I did.  It was an awesome book that provoked a number of feelings in me.

Carly’s Voice: Breaking Through Autism is the story of Carly Fleischmann, as written by her father, Arthur.  The last chapter is, as Carly calls it, from “the horse’s mouth.”  It is written by Carly and edited only for spelling and understandability.

carlys voiceI’m not really sure where to begin in my review of this book.

I commiserated with the Fleischmanns and their struggle having a child with autism.  However, their struggle is almost nothing like mine.  I feel so blessed and fortunate to have a child with as “mild” a case of autism as my Jake.  He sleeps well, he eats well enough, he’s not self-injurious, and he seems generally happy.  Carly barely sleeps, has uncontrollable behaviors, and moaned and screamed, but never spoke.  I can’t even imagine what that’s like.  I found especially poignant the phrase used regarding the paperwork associated with having a child with a disability:  “Tammy would be at her desk plodding through the reams of forms the government creates to discourage those of us in need of help from applying for it.”  How true that is.

I respected their decision to no longer parade Carly in front of an endless line of clinicians in the quest to put new names to her disorder.  “If it’s just information for information’s sake and no cure will come from it, then it’s time to stop.”

I struggled with the idea that this story is supposed to create hope.  I think the idea is that you (or me) are supposed to read the book, see how far they coaxed Carly along with regards to development, and somehow feel that you, too, can do this for your child.  I don’t find that to be true.  The Fleischmann’s have what seems to be an endless pile of money.  They privately hired around-the-clock therapists and behavioral specialists in attempts to eek out a few more milestones from Carly.  In one paragraph, Arthur would lament about his stressed credit line, and in the next, you’d read about how the family was on vacation all over North America, etc., etc.

I felt jealous in the opportunities their affluence afforded; also, their urban setting.  I lost track of how many different private schools Carly attended while they tried to find the right fit.  I don’t have that many options for my child.  I’m not sure where in Maine I’d have that many different choices nearby.  I realize I’ve traded resources and choice for family and community, but like many of us, I don’t have that kind of freedom of mobility.  I certainly don’t have the cash to fund such a heroic quest.

I do have to applaud their tenacity, and also their ability to think outside the box.  I know it’s cliched, but ‘outside the box’ thinking can be the secret to great things.  I read once that if all men think alike, no man is truly thinking.

I can’t wrap my head around continuing to make Carly go “somewhere else” 3-4 days a week, even when she can communicate and says she doesn’t want to.  I just can’t swallow it.

Furthermore, I’m amazed at the woman Carly has shown herself to be.  I agree with her when she says that inside every child, autistic or not, is an inner voice, and if we can access that, amazing things are possible.  I reject the book’s unspoken inference that inside every child with autism, there’s a voice like Carly’s.  I don’t know of many typically communicating people, let alone children, with the kind of humor, compassion, and self-awareness that Carly possesses.  She’s truly remarkable.

I guess in the end, it all boils down to pros and cons.

Pros:

  • Arthur and Tammy show some real tenacity when striving for their daughter’s voice.
  • When she does start “talking,” they listen to her.
  • The book isn’t an advertisement for a particular diet, or approach, that’s supposed to be a miracle cure.  It’s what worked for Carly – take it or leave it.
  • The story of an amazing spokeswoman who was given an opportunity to shine makes me happy inside

Cons:

  • Much of the strategies and interventions employed in the book are far beyond the reach of normal people.
  • Even when she was able to tell them she didn’t want to go to a boarding home, she was still made to because it was easier for the family.
  • The implication that inside every child with autism, hides a Carly.

I appreciate Carly’s candor, and I loved her last chapter.

I can swallow her explanations of what it feels like to have severe autism better than the kid in the last book we read, The Reason I Jump.

Tell me what you thought in the comment section below.

Here’s a clip entitled Carly’s Cafe, created with Carly’s help to give you a taste of what it’s like to be her:

Here’s the 20/20 story referred to in the book:

Next month:

For December, I’d like to read I Am Malala.  It’s about a little girl who stood up against all odds in favor of women’s educational rights in Pakistan.  Amazing story!  Amazing woman!  Click the image below and be taken to Amazon where you can buy the book.  You’ll be glad you did.

malala

Here’s Malala on The Daily Show with Jon Stewart:

 

 

About the author

BigCalfGuy

BigCalfGuy

I am a 39 year old, married, father of three amazing children; one of whom has autism. I fancy myself as more Atticus Finch than Holden Caulfield. Dynamite with a laser beam.

Permanent link to this article: http://www.bigcalfguy.com/bigcalfguy-book-club-november-carlys-voice-nov-13/

1 comment

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