"Is He High Functioning?"
Videos of the Maine CDC Autism Conference

Tattered

Ben franklin By Kent Heckenlively, Esq.

A few days ago I was talking to the latest cutting-edge health professional trying to solve the mystery of my daughter’s autism and seizures when I thought to offer him some advice about entering the bio-med world of injured children and tired parents.

I mentioned the years of struggle many of us have endured, sleepless nights, empty wallets, lost friends, and medical professionals who look away from our children rather than trying to figure out what has gone wrong.  We’re reluctant rebels, made this way only because we grasped that the medical community gave no hope, and even more damning, no explanation.  Why was such a brilliant community suddenly so silent?  If not vaccines, then what?  Where are the demands for a Manhattan project to solve this mystery?  At times I feel this newspaper and a few other voices are like John Connor in the latest “Terminator” movie who declares, “If you hear this message, you are the resistance.”

But resistance has its costs and its perils.  Before my child had autism I was known as one of the most upbeat, optimistic people around.  I’m still that way.  However, in the past ten years I’ve lost my temper more times than I care to admit.  The objects of my wrath haven’t always been the right people.  They’ve been slow service people, others who just happen to cross my path at the wrong time, and even those closest to me.

I was trying to explain all of this to the health care professional when he nodded and said in his brief experience with autism parents he’d already come up with a word to describe the state of so many of us.

“Tattered.” 

It was a good word and I immediately had an image of some tall-masted nineteenth century ship in the midst of a storm, its riggings and sails ripped, while the crew valiantly struggled to weather the tempest.  Understanding the great danger to the ship you’d excuse the crew members if they used colorful language, or inadvertently hurt your feelings.

And I say these things because I hope that those who are considering joining us to figure out this mystery understand the brittle shape so many of us are in.  It’s not personal.  We’re just tattered.  Keep working on an answer.  We need your fresh and rested brains.

I’ve been both criticized and praised for writing about various health care professionals who claim to have new insights into autism.  Some of these insights will turn out to be dead ends.  Others will not.  I believe it’s our duty and in our interest to create as welcoming an environment as possible for those who want to help.

The answer may come from some elite medical facility like Johns Hopkins, or Harvard, or MIT, but it might just as easily come from some self-taught researcher who stumbles upon the answer.  In the eighteenth century lightning was one of the most destructive forces, damaging or destroying thousands of buildings a year in Europe and the United States.  But it wasn’t the learned men of Europe who discovered the answer.  It was self-taught Benjamin Franklin.  We need as many people in this fight as possible.

I know that this tattered sailor will be appreciative of an answer, regardless of where it comes from.

Kent Heckenlively is Legal Editor of Age of Autism

Comments

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Carolyn

Thanks for the wonderful imagery.

I actually like "reluctant rebels" better. "Tattered" makes me (personally) feel like falling into a heap of self indulgent tears.

Keep up the great work!!

Cathy Jameson

I was thinking about this article over the weekend--weekends are when I feel like I can sigh a big sigh of relief that we got through a 'normal' week. My family can finally catch up with the week's events only to get a short break to start over a new week with either new issues or adventures.

Tattered is a great word to me as I think of something (or in this case, someone) is still standing. We may not be as complete as we were before. We may not be all nice and neat as others have previously seen us but, we're still standing. We're still there despite some *thing* happening.

This article reminded me of a flag we used to have. We lived on a lake during an incredible hurricane--our Scottish flag was waving on our flagpole at the water's edge as usual before the storm began. The flag made it through the first few hours of gusty winds but, after an all-day storm, bits and pieces began to fly away. After the storm, once the skies opened and the sun started to shine through, half the flag was ripped off and gone. Where it was anchored to the line, the flag held tight, weathered the 80+ mph winds and the sideways rain and was definitely tattered after that experience. We kept the strong half as a reminder of the storm and its power.

Thanks for sharing this post with this wonderful adjective describing what I'm sure many of us feel.

Kathy Blanco

An expression from a FIRED neurologist at one lovely initial comprehensive review of my sons charts...and I quote "YOUR obsession to cure your child, it making him sick".....

Neeless to say, I pretty much made him pee his pants after that lovely statement, and madea fuss out in the office as I proclaimed, QUICK, run to your elevator, this doctor actually thinks I caused my child's autism....right....

Kevin D

On a particularily depressing (setback today) day, tattered is a good word to use. Almost made me cry (I am a guy after all).

Avery's mom

I love this analogy. How many of us have been told that we are too obsessed or focused on our kids' issues, that we need to loosen up and get our mind off of it? Would you tell the sailors to stop being so obsessed with the storm and to go below deck and play cards for awhile? Of course not. You deal with the task at hand. You can't criticize a parent for focusing all of his or her energy on helping their child through a crisis anymore than you would criticize the sailors for putting everything they've got into keeping their boat from sinking.

sangeeta

Tattered nice name.....solution for autism will cm from within....thousands of autism expert are there....but hv seen solution comes from parents only and for that particular child only...cos every child is different...hv decided instead of running from here to there am asking solution from the source itself and I know will come to me...till than am working on it using my own intelligence.

What the hell!?!

Sorry, not me. I would have smacked that person in the face if he had said that to me.

EILEEN COOPER

I LOVE this word and image. All of us started out as elegant ships but as the seas of Autism became rougher, we became tattered, our sails torn. We can't sail as fast but we keep sailing on. One day, we will be those elegant ships again!

K Fuller Yuba City

Tattered? Yes. Wounded? Yes. But for every wound there is a scar where the skin is thicker. When you have a child who loses speech and you work and work to get that child verbal. It is so worth being tattered.
Some ask us what more do you want?? He speaks. Well I want it all...Now that we know what is possible, how can we settle for anything less?
Thanks for writing Kent. I offer you patches for your tattered sails. Those sails will still pick up wind and power even when patched.

karenatlanta

Kent,
Your unconventional perspective has been refreshing.

9 years in - all our life savings gone,no health insurance coverage, Mom back to work 2nd shift, thousands of hours in sweat equity, cruel opinions by people who have no idea what we have endured and I can truly say it has all been worth it. We are not 100% yet but darn close and verbal.
We have never taken the conventional path, if it made sense we tried it. DAN, YASKO, Pat Kane, Mito support etc.
If it takes being tattered, so be it.
I do not regret looking under EVERY rock.
Tatter me, if it means in the end I will find my beautiful son.

MW

Good job Kent. At least Mick understands.

Shattered, shattered
Love and hope and sex and dreams
Are still surviving on the street
Look at me, Im in tatters!
Im a shattered, Shattered

Friends are so alarming
My lovers never charming
Lifes just a cocktail party on the street
Big apple
People dressed in plastic bags
Directing traffic
Some kind of fashion
Shattered

Laughter, joy, and loneliness and sex and sex and sex and sex
Look at me, Im in tatters
Im a shattered
Shattered

All this chitter-chatter, chitter-chatter, chitter-chatter bout
Shmatta, shmatta, shmatta -- I cant give it away on 7th avenue
This towns been wearing tatters (shattered, shattered)
Work and work for love and sex
Aint you hungry for success, success, success, success
Does it matter? (shattered) does it matter?
Im shattered.
Shattered

Ahhh, look at me, Im a shattered
Im a shattered
Look at me- Im a shattered, yeah

Pride and joy and greed and sex
Thats what makes our town the best
Pride and joy and dirty dreams and still surviving on the street
And look at me, Im in tatters, yeah
Ive been battered, what does it matter
Does it matter, uh-huh
Does it matter, uh-huh, Im a shattered

Dont you know the crime rate is going up, up, up, up, up
To live in this town you must be tough, tough, tough, tough, tough!
You got rats on the west side
Bed bugs uptown
What a mess this towns in tatters Ive been shattered
My brains been tattered, splattered all over manhattan

Uh-huh, this towns full of money grabbers
Go ahead, bite the big apple, dont mind the maggots, huh
Shadoobie, my brains been battered
My friends they come around they
Flatter, flatter, flatter, flatter, flatter, flatter, flatter
Pile it up, pile it high on the platter

Jeanne

Incredible piece Kent; of course I expect no less from you. "Tattered." Yep, that's me. Reminds me of one of my favorite poems, Invictus by William Ernest Henley.

Invictus

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludeonings of change
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet, the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Twyla

Very well said.

Jack R.

Tattered.

That actually is the perfect word. I had always had the word "broken" in my head but that wasn't quite right. We all fight too hard to be considered broken. But "tattered"; that we are.

Wyndie

I recently met a scientist who had not been aware of the prevalence of autism (WOW! How can someone not know?) nor the fact that it's treatable. During our discussion I had to keep reminding him that we were not a market, but a group of fierce parents, tired of the fight, tired of the pain our children suffer but unwilling to quit and always searching. Tattered is the best word picture I've ever heard.

Here's to new answers from unexpected sources and a cool breeze.

Theresa

Kent, I think your work in highlighting unorthodox treatments is very important. A recent NYT article (http://www.nytimes.com/2009/06/28/health/research/28cancer.html?_r=1) revealed that the system for obtaining NIH cancer research grants encourages safe projects likely to yield incremental results and actually *discourages* innovative work. If we know it's true for cancer, then it's probably true for every disorder--so the big research institutions like the ones you named are likely to continue chasing their tails with eye gaze studies and gene research. I think it's heroic that a "tattered" parent is doing so much to help, and I hope you do find the next Ben Franklin.

Tanners Dad

Great article. "Tattered" Torn ripped shredded toasted fried & ready for the weekend. Damn its Monday... Thanks for reminding us to be gentle they may be ignorant today but they might hold the key.

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