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Latest Blog: "Introducing 'Ask Barb'"

Who do you think you are?  Does it depend on who is asking and how?  Is Johnny Carson inviting you to the couch or is a George Zimmerman making deadly assumptions? 
My smiling shrink (SS) lives next door and I visit often.  SS is nearly devoid of taste and employs decorators to help the place not look like a P.E. teachers’  closet.  (This is no news flash to SS so save your pity, she has adapted well to her disability.)  One hired fancy gun instructed them to buy a pair of huge gold painted  broken chairs covered in insanely textured pink fabric the decorator spied in a junk store.   Turns out, after being stripped, repaired, and upholstered by a more sane craftsman, the chairs are recognized as true antique museum quality mahogany masterpieces worth more than anything else cheap SS owns.    We call them the “Who do you think you are?” chairs and I plop my plumpness on them at every opportunity, because that I can do.  I can choose to think I deserve to sit at the head of the table.
Philosopher King Marcus Aurelius wrote, “The universe is change; our life is what our thoughts make it.”
As we consider the complexities and power of perspective, please allow me to give what I have to offer – my perspective, which is much safer to ship than Winston Churchill’s proposal, “I have nothing to offer but blood, toil, tears, and sweat. “
My hard earned perspective may be best packaged in my audio book and as the most recent Amazon review says, (5.0 out of 5 stars), I hope,
“You'll laugh, you'll cry but most importantly you'll look at the world differently!”
We are sending 5 free audio books to outstanding bloggers who help spread the message of hope.   Please look for the giveaway soon on the following: Donna Williams “Donna William’s Blog”,  Ariane Zurcher’s  “Emma’s Hope”, Linda Stanley’s “Outrunning the Storm”,  Jessica Gordon Wilson “Diary of a Mom”, and an exciting new blog by my autistic peers, “We are like your Child”  
For those bloggers who choose to participate, their readers are asked to simply click a link to the offer and viola - complimentary audio book.  It is an early autistic bird special as only the first 5 entries from each blog get the bookworm.
What does a giveaway have to do with perspective?  Everything.  Life is perspective and life stinks without giving.  (Getting does not suck either, so lets keep this going.)
What inspired me to do this was the recent controversy concerning the autism chapter in Andrew Solomon’s artfully researched bestseller Far From the Tree.  (The book took him 10 years to write. I can relate to that type of perseverance even though I suspect Andrew may type with all ten well manicured fingers and not just one autistically weird, nail bitten digit like me, but who am I to judge if he needs extra time.)  Many in our autistic community wish to boycott his book as they find it to be filled with harmful parenting horror stories.   I wrote on that below and have since heard the chapter.   We non-verbal auts often enjoy learning with audio books as we can usually do so under our own steam.  Which is why this giveaway is audio book specific.
Solomon is a master storyteller.  He relays tales of parents in harrowing, sustained pain.  He gifts these real people a voice. These overwhelmed parents are being heard.  I write of the healing power of being heard, here
Below is my comment following Jessica Gordon Wilson’s “Diary of a Mom” account of this controversy.   The next comment comes from a special education counselor (The kind of special, nobody, I mean NOBODY wants to be).  See Dick run about his trouble with hardness.
it is true autism is hard. i have autism, the hard kind. but i have decided to be up to the challenge as my parents did because their is no other palatable option. andrew solomon is no enemy of those of us who are here with jess to “demystify the condition and to humanize the people behind the label in the public eye” because andrew is genuinely trying to know. so should we. andrew will learn from us and we from him. life is perspective. to live a balanced wholehearted life we are wise to learn how we are perceived so we may better connect with others and each respect who we chose to be. so, i just purchased “far from the tree” to learn more of those perspectives knowing they may be hard to hear. i hope andrew will repay my respect and purchase my audiobook, “i might be you: an exploration of autism and connection” so he may learn my hard truths. may we all transform “years of accumulated slights” to the now of empathy and compassion. sometimes hard to hear but listening b

            Dick says: 
July 12, 2013 at 10:22 pm 

I’m skeptical that anyone can honestly write “i have autism, the hard kind.” I am a 50 y.o. rehabilitation counselor and I work with adults and kids with autism – the hard kind – every day. None can read. None can write. None even know what autism is. THAT is “the hard kind.” I also work with adults and kids that have autism – the not so hard kind – who read and write and drive. But people who have “the hard kind” of autism can’t write about it. They can’t even talk about it.

            Barb says: 
July 15, 2013 at 10:50 am 

dear dick, it is my hope you will be open to knowing that many of us who are disguised as poor thinkers are in fact more like you than you may choose to believe. we may have a variety of physical and mental challenges confounded by profound difficulties with communication which shroud our humanity. i invite you to please take a few moments to read this link about how some of us with the hard kind have broken through with lots of hard work and sustained focus. thank you for caring. real b
      “a note on how this book was written”

I wrote the measured response to Dick above because I am learning we all do better when we know better.  From my hard front row seat to autism, rehabilitation counseling, and special education, I learned that believing one’s students are mentally deficient and not capable of sentient thought much less writing leads to not teaching Dick.  (Oh, did I leave out a comma?  If only I could learn to write…)
Almost 100 percent of my teachers thought that way and treated me accordingly—as a lesser being. It only took one teacher who taught from her heart to my heart to change my reality and course. Andrea Reynolds assumed my value and competence. Then so did I. Others followed suit. Today, I choose to no longer allow myself to be excluded from humanity by such perceptions I do not share.
(Note to teachersand we are all teachers: It just takes one. Be that one for someone.)
These days as awareness of my story grows, folk share their perspectives of me and my work daily.  Some are hard to hear while others are beyond gratifying.  Which perspectives are real?  I learn from them all so they all are of matter. 
Who do you think you are?  (Please comment by replying to this email) 
Really wanting to know,

Ask Barb:  "Practical Implications for Teachers Who Wish to Know More"

1. Give us the benefit of the doubt. Don’t assume mental retardation based on behavior and poor communication. One has nothing to lose by assuming competence and treating the different person with non-patronizing respect. Give us the freedom to rise to expectations……surpassing may come next.

2. Get to know us. That should be the first order of business—not trying to fix or change us. Let the autistic person know that you are here for them and want to get to know who they are and what they do. Everybody has this knowledge about self, although most have it hidden under a bushel. Autistics traditionally have huge bushels weighting down their heads. It is challenging, but all are capable of discovering who they are and what they do. Let it shine.

3. Listen. With nonverbal or echolalic autistics, this seems daunting, but break it down. To listen means to make an effort to hear, take notice of, or heed. So, if folk are not talking or typing—observe. Study their past, proclivities, and how they spend their time. Find out what gives them joy. Once at least one interest is pinpointed, go from there and make learning opportunities and socialization related to that interest. For me, I was interested in history, science, and philosophy. I actually typed that fact many years ago, but that information was enough to get the ball rolling. Through books on tape and reading aloud, my curiosity came alive. Next, we slowly incorporated me discussing the readings with Lois or a tutor. To discuss, I had to type, so that increased my mental “on-task time,” communication skills, and reason to roll out of bed. 

Barb and Davante choosing to sit at the front of the swing

4. Motivate. Motivation is often tricky for autistics. Curiosity jump-started my internal motivation rather than a burning desire to accomplish. Make participating in things outside of the autistic mind interesting, safe, and low-stress. Once you entice us out of the autistic mental house, we may find something worth visiting regularly.

Pull up a “Who do you think you are?” chair and join me, won’t you?

5. Smile. Smiling is not wasted on autistics. We sense and often take on the affect of those around us. People who are happy, confident, honest, energetic, and don’t take themselves too seriously help make mentally external tasks appealing to us. SS insisted that my team members work with me in only short blocks of time like two or three hours to ensure “freshness”. Burned-out, tired, listless, disingenuous, or pessimistic workers were not hired.

6. Be patient. What normals perceive as “waiting” and “wasting time”, we may view as stasis. Like well- seasoned Tibetan monks, we are in no rush. We understand the reality of impermanence. We understand the reality that nothing is as it appears to be. Please, consider here my hypothesis that there are more autistics now because of human evolution. Autism may serve to provide the individual time and space to contemplate and meditate more so than any convent or monastery. Non-verbals “waste no time” on vows of silence. We simply live it.

7. Persevere. Set specific short—and long-term goals. Each day, do at least one thing designed to make progress towards one short-term and one long-term goal. Keep a detailed account of precisely what was accomplished each day. Review this log at the end of each month.

Have a question that you'd LOVE to ask Barb? Click here to get answers
Below is a pristine example of the beyond gratifying kind of comments I get to learn from as well. (I changed the names for privacy as I did for Dick, but nothing else was altered)
Dear Barb and Lois –
(I should probably address this to Ms. Rentenbach and Dr. Prislovsky, as I do not know you and deeply respect you.  And yet, after reading your wonderfully intimate book, it feels much more appropriate to address you as friends I haven’t yet had the pleasure of meeting.  So I hope I don’t offend you with my greeting.)
I don’t know where to start.  “Thank you” is probably best, but it seems so woefully inadequate for the emotional roller coaster ride you just took me on as I devoured “I Might Be You” over the past week.  I laughed, I cried, I dog-eared pages to come back to, I read whole passages out loud to friends, family and total strangers because I just had to pass these marvelous insights on.  I just bought 20 copies to share with friends, family and the wonderful team of professionals who support our lovely Sonny.  I *may* also give one to the a**hole school psychologist who looked at me with condescending pity when I challenged his assessment of my son as mentally retarded.  I think IQ tests largely measure our ability to take IQ tests.  He thinks I'm in denial.  Anyway, I’m not sure he deserves to be let in on the “secret” but I think I’ll try anyway for the sake of future children he’s asked to “evaluate”.
I am in awe of the mental and physical effort it must have taken to craft this book.  I am blown away by the level of raw emotional honesty it required.  It is transformative, and even people of your prodigious imaginative powers probably can’t imagine the profound impact it is having on all who read it.  Thank you.  Thank you.  A thousand times thank you.
I think one of the most challenging things for a parent  is to simultaneously communicate “I love you unconditionally exactly the way you are” AND “I’m going to do all that I can to help you unlock your full potential and help you lead your best life”.  Your book confirmed for me that it is imperative to keep broadcasting these messages on all channels,  and to keep listening ON ALL CHANNELS to what’s getting relayed back.
Though I am not nearly as eloquent as either of you, I feel compelled to share something of my own life back with you.  This is a poem I wrote a few years ago.
Three Stops on a Long Journey with You
A triptych for Sonny
“To sing love,
love must first shatter us.”
-Hilda Doolittle
A trip to my hometown
I was punch drunk
by the time I went to bed.
You had rained
blows on me
all day.
Fistfuls of hair
lay scattered in the house.
You screamed
for me
to help you.
And I could not.
More than four years
in the trenches
with you.
Inches then yards
of hard won progress
taken from us
As the loss
of a key weapon
allowed the storm
to surge
in your brain
You kicked
the car so hard
you sprained your ankle.
I watched your little body
limp around the block
as your grandfather
limped behind you.
That night I feared
I would not
But I let go
and in my dream
I was swimming
in an ocean lagoon
fins approach
my blood turns icy
I cannot reach the shore
the warm salt water roils
inches from me
a dolphin breaks the surface.
A dolphin,
I marvel.
I touch,
the smooth skin
is soothing.
It clicks at me
and stays by my side.
In the morning when I wake
I remember
with the sharpness of memory
rather than haziness of sleep.
I turn it over
in my mind
not sure
if I am convincing myself
that it is
or is not
a sign
a message from the universe
or god
or my own reeling subconscious
something that loves me
whispering a message
"Don't be afraid"
some profoundly intelligent
life forms communicate
without words"
"Something will come
and help you
swim to shore".
I know that it's just
a random synapse
firing in my brain
but just for today
I want to believe
it is a sign.
I want to believe
A trip to the park
Crunching our way through the tidy
piles of brilliantly-hued leaves
you are shouting
“Shaw wa wee!”
at max volume
in the otherwise quiet neighborhood.
I follow you
like an uncertain echo
and am rewarded
with a smile
and then a bubbling laugh.
We wind our way
through the streets
in a slow crescendo,
A couple approaches
from the opposite direction
puzzled, then dazzled
by the fierce joy
you are flinging
at the piercing blue October sky.
The man catches your
fleeting eye – no small feat –
and shouts
“Sha wa wee!”
right back at you.
Startled still for a moment
a smile explodes across your face
transfiguring you
with a violent beauty.
We stare at you, stunned,
as if witnessing
the apparition of an angel
from the age of miracles.
I want to weep my thanks
to these strangers
for their casual kindness.
Instead I smile
and we continue to the park
where we fight about your shoes.
Later at home
you tell me “Sit”
and push me
onto the orange couch.
Though only a head
shorter than me
you climb onto my lap
and bury your face
in my neck
then raise your head
and say “Hug”.
A trip to the zoo
Sunday at the zoo
I try vainly
to get you to stop
for a moment
and look at the lions
or giraffes
or playful otters.
But we just race
around the crowded paths
hardly glancing
at the exotic inhabitants
and then finish our circuit
with the usual beeline
to the primate house
where you will spend
more than half an hour,
longer than you do
just about anything else,
in front of the gorillas.
You’ll push your way
just in front of the biggest one
as I whisper hurried apologies
behind you.
Though he seemed impassive
as we approached
I swear he stares
back at you.
Something about the quiet symmetry
unnerves me still,
the way you seem to share
an intelligence so orthogonal
to the one that prevails
in the surrounding world.
As I think about the thousands
of hours of therapy
and the halting words –
a couple hundred?
at your command.
I wonder
if we have made
nearly as much progress
on our own road
to meet you.
I try to keep my face impassive
but I can tell
by the pained looks
of passers by
that I have not succeeded.
I hate the zoo.
I’ll stop there, know that you, of all people, know the inadequacy of words to express what I am trying to say.  Thanks again.
Very truly yours,
P.S. If you are still in touch with Jess Wilson of A Diary of a Mom, please thank for me for introducing me to your book via her blog!

And that my friends is the circular joy of giving. 
Enjoy the beautiful poetry above and all around. 
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