Tag Archives: i might be you

And the Winners Are…

Posted on April 11, 2014 by | 10 comments
Emma randomly chooses the winners...

Emma randomly chooses the winners…

This morning  I placed all the names of those who commented on yesterday’s post into a bowl and Emma randomly chose five names to win Barb Rentenbach and Lois Prislovsky’s hard cover book, I Might Be You…

Be prepared to be blown away.  This book is absolutely wonderful.

To all the winners – Julie L., Edie, Kathy Quoyerser, Corinne Joly and Jill – I will be contacting you by email. Your book will be sent via United States Postal Service after I’ve received your address.

And for those who want to read it, but didn’t win, please consider purchasing this terrific book either as a hard cover or as an ebook available for all eReaders, or the audiobook, which I had the honor of recording with Barb and Lois in New York City last year.  I am the “voice of Barb” and documented that amazing experience ‘here‘, ‘here‘, ‘here‘ and ‘here‘.

2

without looking…

And the winners are...

And the winners are…

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Posted in Autism, Autism Books, Barb Rentenbach, i might be you

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“Barb Doesn’t Talk” ~ Emma

Posted on April 10, 2014 by | 35 comments

I have a friend who, when they met over a year ago, Emma observed, “Barb doesn’t talk“.  “Doesn’t talk” means she doesn’t talk with her mouth to communicate the way she can and does when writing.  Her name is Barb Rentenbach and she and her therapist, Lois Prislovsky wrote a book, I Might Be You.  I’ve written about Barb and Lois before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  If you haven’t read their book, you must.  (Continue reading for a surprise later in this post about that book.)

I met Barb at the Autcom Conference in 2012 and though I didn’t know it at the time, Barb and Lois  would have an enormous impact on me that was far-reaching.  You see, it was because of Larry Bissonnette, Tracy Thresher, a boy I saw writing to communicate, and finally Barb, all of whom I met at the Autcom Conference, that I began looking into other ways for my daughter to communicate.  (You can read more about the process by clicking “How We Got Here“.)  Even though Emma can and does use her voice to speak, she has described her attempts to communicate with spoken language as, “I can’t talk the way I think.”  Later Emma wrote, “Please remember that my mind tells my body and my mouth to do all sorts of wonderful things constantly, but they don’t obey.”

In Barb’s most recent blog post (I urge everyone to read it) – Open Hearted Letter Quilt to Andrew Solomon –  she writes about autism, empathy, and how autistic people are often misunderstood:

“It’s like Saxe’s (1873) poem, “The Blindmen and the Elephant” where each blind man is partly in the right as he describes an elephant piece he studies, but all are in the wrong in knowing an elephant.

This autistic pachyderm will expand perceptions by presenting more pieces.”

Barb goes on to describe herself, “I don’t look normal.  I appear quite messed up and a prime candidate for nothing but pity and patronization, with a sprinkling of repulsion and fear.  I am disguised as a poor thinker.”

Still further along she quotes Emma:

“To quote my mentor Emma who is 12 (This old dog is all about learning new tricks) who wrote this by saying each letter aloud she pointed to it on a stencil board, “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.”

This short video shows Barb typing just a few days ago.

Now there are some people who have suggested Barb is not typing on her own.  They believe that the person whose two fingers are tentatively touching her back are actually guiding her and that it is their voice and not hers that we are reading. This is a video of Barb writing four months ago…

And here is a video of Barb typing in 2011…

I am showing you these clips so you can see Barb’s obvious progress and please note, Barb is not a child.  I know that’s obvious, but it seems many people forget this or have trouble believing that people of all ages can and do progress.  Just as Barb works hard to become more independent while typing, so does my daughter.  Emma’s way of writing is slightly different in that no one is physically touching her and she points to letters on a letter board,  but she is working hard to move from pointing to the stencil letter board to the laminated letter board to a qwerty keyboard, with the eventual goal – being able to type on a computer regardless of who might be seated nearby.

As all these videos show, none of this is easy.  Barb is working hard and so is Emma.  Some days go more smoothly than others.  As Barb writes –

“I often politely ask my brain to please move my hand to do this or that only to be told, “We’re sorry due to high autism volume we are not able to answer your call at this time.  Please try harder later.”

For any of you who would like to have a hard cover copy of Barb and Lois’ terrific book, I Might Be You, I am giving away five hard cover copies.  Please comment below, saying something about yourself and why this book is of interest.  I will place all comments into a hat and will choose five at random.  If your comment is chosen I will contact you, via the email you use to comment, for your street address, where I will send you your copy of Barb and Lois’ MUST READ book at no cost to you and in appreciation to Barb, Lois and Emma for their hard work in bringing much-needed awareness to all who are like Barb and my daughter!

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

 

 

 

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Posted in Autism, Barb Rentenbach, communication

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What To Do When Someone Hurts

Posted on February 11, 2014 by | 25 comments

When Emma was just two years old she was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified or PDD-NOS, which is the “it-may-be-autism-but-we-can’t-be-sure-maybe-she’s-just-a-bit-different-so-let’s-just-wait-and-see-what-happens-before-we-say-it’s-autism” diagnosis.  Two years later, Emma was diagnosed with autism.  But in 2004, when Emma was given her PDD-NOS diagnosis the neuroscientists, Kamila and Henry Markram, had not come up with their Intense World Theory for Autism.  The idea that Autistics have a brain that is far more sensitive to all stimuli than non autistic brains, was not something people were talking about.

Emma has since told me that she can “hear” people.  When I asked her what she meant by that, she wrote that she could sense people’s emotions and inner turmoil.  She could hear their moods.  I have been told and read similar things from other Autistic people.  This is something Barb Rentenbach also talks about in her must read, book, I might be you.  Now add to the intense sensory sensitivities that ebb and increase suddenly and without warning, lights, noise, touch, smells, tastes, feelings and you will begin to understand how overwhelming and unpredictable life can be.  Or, as Emma wrote last week, “On Monday a noise is pleasant, but on Tuesday the same noise is not pleasing to me.”

Yesterday, Emma wrote about what happens when she bites herself and the things others can do to help, as well as the things people do that make it worse and it made me think about my reactions to seeing my daughter hurt herself.  I can go through a fairly quick series of feelings.  I might feel scared, oh, no!  She’s hurting herself, this is terrible, I have to make her stop! and concern mixed with confusion, what can I do to make her stop?   But I also may feel other things too, like a desire to control the situation, annoyance and embarrassment that she is screaming in a public place, stress and overwhelm from the tears and her obvious upset, feelings of inadequacy that I should be able to help her more than I am, wondering whether I am a bad parent, believing that if I were a “good” parent, she wouldn’t do these things.  Questioning my own reactions, worrying that if I don’t force her to stop, people will harshly judge me or criticize me or believe I don’t care that she’s hurting herself.  Or maybe the situation is also stressful for me and I’m also in overwhelm.  And on it goes.  But as Emma wrote, “I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.”  So if I don’t spend the time to think about and become aware of what I’m feeling as I witness her, I will react in ways that actually exacerbate her overwhelm.

I am once again reminded of my car ride with my beautiful, friend Ibby while visiting her in Chicago this past December.  I wrote about that ride ‘here.’  What Ibby did was such a perfect example of what I needed, though I did not realize I needed it and could not have asked for it, had I been asked – what do you need?  A calm, loving voice, carefully telling me what was going to happen next and why, a calm loving voice coming from someone who genuinely loves me, who I know has no agenda, was not trying to control me, whose words and concern were completely for me, with no other motivation than to truly be there for me… this was what Ibby gave me during that car ride.  Ibby did not try to take away my feelings, she didn’t try to control them, she wasn’t judging them, she was calm, patient, accepting and above all, incredibly kind and loving.  And, by the way, Ibby could not stop the noise the wind shield wipers made, it was not something that was within her control, it was snowing hard, she could not drive without them, yet even so, what she did instead made all the difference in the world.

It seems so simple, it seems so obvious, but it is actually quite rare to have someone do this for another.  So I will end this by encouraging all who want to know what they can do to help someone who is deeply distressed, examine your feelings, really look at them and make sure you understand what you are feeling before you attempt to help another, because if you’re becoming upset with someone else’s upset, anything you do will cause the other person to only become more upset.  Until I can get to a place of having “helpful thoughts of calming kindness.  Reassuring words of understanding, instead of irritation and impatience”  my response will add to the other person’s overwhelm.

*I just have to add here, this is something I find very difficult to actualize.  It is a work in progress, but it is vitally important.

Ariane & Emma ~ 2011

Ariane & Emma ~ 2011

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Posted in Autism, Parenting, Self Injurious Behavior

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Audio Book “I might be you” Giveaway!

Posted on July 24, 2013 by | 10 comments

Barb Rentenbach, author of the wonderful book I might be you, which if you haven’t read it yet, you must, is giving away the audio version to the first 5 people who click on this link and enter your name.  Ready… set… GO!

For those of you new to this blog or who may have missed the posts or who read them the first time, but can’t remember them any more or those of you who want a refresher course on all things involving Barb (and why wouldn’t you?) I wrote about recording Barb’s book last spring, you can read all about it ‘here,’ ‘here,’ ‘here‘ and ‘here‘.  If you want to hear directly from Barb about the giveaway and why she is doing this, read her post “Introducing: ‘Ask Barb’”

Now I’m going back to bed because I seem to have caught some nasty bronchial cough, runny nose, sneezing, achy, maybe even feverish horror that I mistakenly thought was allergies but that I am now convinced is a distant cousin to whooping-cough.  In other words I’m miserable and unless you want to read an entire post about just how awful I feel, you should go now and pick up that FREE audio book quickly while they last.

No, no, never mind me… *coughing while feebly gesturing you to get on with your day.

Barb Rentenbach & Lois Prislovsky in the recording studio (I was in the ‘cave’ aka recording booth with headphones on)

Barb & Lois

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Posted in audiobook, Autism, Barb Rentenbach, i might be you

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Non-Speaking People Who Type

Posted on June 6, 2013 by | 73 comments

This is a topic I would prefer not to discuss, but a few things happened recently that make it difficult not to write about this.  So… here goes…

Facilitated communication has had a bumpy history.  It began in the ’70’s and has been lurching along ever since.  There have been studies done, both proving it’s validity and others proving it as an invalid method of aiding those who do not speak to communicate.  This post is not about whether FC is valid.  Those who do not believe in FC’s ability to help those who cannot speak will not be swayed by anything I write here.  For those who are interested in reading more about FC and its history you can do so by reading this and this and the many links embedded in these posts.

What I will write about however, is all those FC users who have gone on to type independently.  And here is where things get really interesting.  Those same people who are convinced FC is all a mirage, a kind of non-speaking, Autistic version of an elaborate magic show, remain convinced the non-speaking person who now types independently is not really doing so.  Those people continue to insist it is a “hoax” despite witnessing, some even after seeing in real life, a non-speaking person type on their own.

Just to be clear, I am not writing about hand over hand or a hand on a forearm assistance.  I am writing about the many people who began typing with a facilitator, but who now type independently.  By independently I am referring to those who may still need a trusted person standing nearby.   Some type with another person’s hand placed on the middle of their back, others may need a hand gently placed on their shoulder.  Yet these same people who speak out forcefully, often aggressively to any who dare write about someone who is non-speaking and writing of their experiences, say even a hand on the back proves these non-speakers cannot and do not type their own words.  They insist that they are merely puppets doing the bidding of the person who is physically nearby.

What fascinates me about this is that these same people who insist it’s all a “hoax” (this is the word they usually use) would rather believe a person can move a seated, non-speaking person’s hand to hit specific keys on a keyboard by virtue of their physical presence, rather than entertain the notion that this non-speaking person, may in fact, be typing their own words.  One such person commenting on a blog post about something unrelated to FC, but that had a link to Barb Rentenbach’s book, I Might Be You, wrote, ” I don’t consider typing with an arm on the shoulder independent typing. You can clearly see the facilitator nudging her towards the letters.”  Not to quibble, but seriously?  So this is like some sort of typed ventriloquism?  Touch someone’s back and direct them to write thoughts that are not their own?

I urge any of you who believe this is possible to try doing it… place your hand on another’s shoulder or the middle of their back and see if you are able to control what that person then types.  And while you’re at it, try standing next to the person and psychically urge them to write something.  It seems incredible, but there are those who not only believe this to be the case, but they then demand “proof” that this person is typing independently, despite the fact that they’ve just been given the very “proof” they asked for.  Evidently “proof” is subjective.

What bothers me about all of this is that those who are typing to communicate are doing so because they have no other means.  This is not a “choice” that’s being made.  The people who continue to insist they are a “hoax”, that it’s all a “mirage”, that they are being “controlled” are taking away the only way they can communicate.  They are silencing them.  They counter this assertion by saying that on the contrary, they are actually “advocating” for those who do not speak and are protecting those who are at the mercy of a facilitator who is putting words into another’s mouth.  Yet, even when confronted with a non-speaking person’s typed words, typed without anyone’s hand on their arm, they continue to insist the very presence of this other person is all it takes.  The transference of perceived power to cover up their dehumanization of another is convoluted.

If you google “Carly Fleischmann” the third entry that comes up is “Carly Fleischmann fake”.  Sadly Carly is not alone when it comes to such beliefs.  There is a long and horrible history of non-speaking people being discounted and effectively silenced by those who believe they cannot possibly be intelligent, insightful beings.  There are those who will dismiss people like Carly as an anomaly, a “prodigy” and thereby ignore the years of effort it has taken her to get to where she now is, or they conclude she is a “fake”.  There is nothing new about the silencing of human beings deemed inferior.  (Read Inventing the Feeble Mind by James W. Trent, Jr.)  The ingrained prejudices and dehumanization of Autistic people continues.

I want to end with one last thought, which is this – if you found yourself unable to speak, but could type to communicate, yet when you did so, people doubted the validity of your words, accused you of not actually writing what you’d so painstakingly typed, what would you do?  How would you respond?  How would you fight back?  Could you fight back?  Restraints come in many forms, but all are effective.

As Barb Rentenbach writes, “I might be you.”  For those who doubt that sentence is her own, you better hope those words are wrong.

Barb types with Lois’s hand on her back as Emma twirls her string – April 2013

Barb types

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Posted in Autism, facilitated communication, supported typing

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We Are in This Together

Posted on June 5, 2013 by | 32 comments

“It is in our best interest to remember that we are all the same.” ~ Barb Rentenbach in her book, I Might Be You.

One of the most insidious and destructive messages parents are given about their Autistic child is “the list.”  I am referring to that list of deficits we are given.  The list that enumerates all the reasons why our child has earned the “autism” diagnosis.   It is a list that divides.  It sets us a part from our child.  It makes us question our maternal instincts.  It makes us wonder what we did wrong.  It is the list that becomes our to-do list.  A list of things we now set out to “fix”.  Or so this was my experience when my daughter, Emma was first diagnosed.

That list, filled with judgment, a critique of my not-yet-three-year-old child, the same child that just moments before, I knew was different from what I expected, different than my son, yet still was a part of, was now branded with “other”.  If we are going to make such lists, I think it only fair the “evaluator” and all members of the human race be given similar critiques.  I would be curious to see how each of us stands up under such scrutiny.  Let us be evaluated by someone who does not share our particular neurology.  Let us each be judged by another – another who deems themselves superior.  Let’s see how well that plays out.

“Loneliness is the most predominant side effect of our unique design. Many times, autistics revert to isolation by default rather than preference. It is infinitely easier to back away and not try to be included instead of oafishly stepping in and attempting to convey you intend to be a part.” ~ Barb Rentenbach in I Might Be You.

Have you ever felt like a fraud?  Have you ever said something to someone only to realize you said the wrong thing?  Have you ever been in a social situation and left, wondering why you feel uneasy, upset or just sad?  Have you ever spent time in the presence of a group, yet felt lonelier than had you been alone?  Have you ever had the thought that if people really knew you, they wouldn’t like what they found?  Have you ever felt separate from, less than, not good enough?  Have you ever felt critical of the way you look, the shape of your body, the size of a particular body part and wished it were different?  Have you ever thought if only that part was smaller, larger, different, if only the number on the scale was less, if only your hair was lighter, darker, straight, curly, your skin was a different shade, your height…  Have you ever thought if only X was different, I wouldn’t feel this way?

Remember a time, no matter how brief, when you felt that magical euphoria of connecting with another human being?  That moment when you felt the wonder and bliss that only comes with friendship and love, the beauty of connecting with another?  Remember what that felt like?  Wasn’t it beautiful?  Wasn’t it unlike anything you’ve ever felt?  A kind of anything-is-possible feeling?  A feeling of all being right with the world, that joy of knowing we belong.  Who among us has not experienced both?  Who among us has not felt the horror of feeling separate from, the worry that we are somehow damaged, not right?  Who among us has not felt the inextricable sadness that comes from feeling we are all alone?  Now add an entire society, a whole group of people, all of whom have decided we are “less than”.  Feel what that feels like.

Go back to the memory of bliss, of joy, of connection.  Feel the vibrancy, the exuberance that comes with that.  Which do you choose?  Would any choose differently?  We are all served by remembering we are more alike than not.

“Reach out and connect with those who may be struggling with separation. It takes just one person to care to change a life for the positive. Be that for someone.” ~ Barb Rentenbach in I Might Be You.

Emma, Barb & Lois the week we recorded the audiobook of I Might Be You

Em, Barb & Lois

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Posted in Autism, Barb Rentenbach, Parenting

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The Audio Book for “I Might Be You” is Here!!

Posted on May 17, 2013 by | 6 comments

Barb Rentenbach’s fantastic, funny, poignant and beautiful, must read book, I might be you. An Exploration of Autism and Connection is now available as an audio book!  Full disclosure:  Barb, who is non-speaking or “mute” as she describes herself, and Autistic, asked me to be her voice for the audio book, an honor I cannot begin to fully express.   I do not receive any proceeds from the sale of the audio book.  The payment I receive is the joy I feel knowing that Barb was pleased with the end result.  It is a joy that is literally priceless… That all of you, who purchase the audio book, may benefit from Barb’s hard work is the metaphoric icing on an already sumptuous and exquisitely rich cake.

Barb is non-speaking and writes with a sharp-witted, R-rated, take no prisoners eloquence.  She is brutally honest in her description of her life as someone who is often mistaken as someone she is not.  For anyone who has ever felt they are on the fringes of society, felt they didn’t “fit in”, judged, seen as an “outsider”, as “other”, as less than, this book will resonate.  For anyone who has ever felt insecure, shunned, rejected, judged, criticized or misunderstood, this book is for you.  I Might Be You is about how we are more alike than not.

In preparation for this post, (and a version of this that I will be submitting to the Huffington Post) I asked both Barb and Lois Prislovsky, Barb’s therapist and co-author of I Might Be You to give me their thoughts on the making of the book and subsequent audiobook.  Lois wrote: “Barb typed, “being heard may be as close to helping to cure all that ails ya as one prescription gets.”  I agree.  As a psychologist, I get a daily front row seat to this truth.  What I find most remarkable about Barb is not her spectacular growing wisdom, wit, or even her gifted powers of perception.   It’s her patience that I think is unparalleled.   This book literally took her over 10 years to write one disappointment, milestone, and letter at a time.  My chapters were faster because as Barb says, I am, “less interesting”.  No one book or person has taught me more.  Barb is my favorite author and teacher.”

It took Barb ten years to write I Might Be You because she knew there would be those who would doubt the words in the book were her own and some who would even accuse her of not typing this book herself as she first learned to type with a facilitator.  Determined, she spent ten years learning to type independently, each word spelled out, one index finger jabbing at a letter at a time as she pushed beyond her physical and neurological challenges that made typing completely on her own so very difficult.  Ten years.

I asked Barb to weigh in on what it was like for her to hear her words being spoken out loud by someone who not only was not autistic, but who needed a great deal of direction during the recording!  By the way, Barb was a terrific director: kind, patient, encouraging, yet exacting and uncompromising in her insistence that her words be given the voice she needed them to be.  I wrote about my experience of recording her words ‘here‘, ‘here‘ and ‘here‘ on this blog.  But this post today… this post has to be Barb’s words, Barb’s experience written in Barb’s voice and not mine.  This is what Barb wrote to me:

“health: the state of being free from illness or injury.

“in preparation for this piece, az asked me to “let me not speak for you but rather hand the huffpo mic over to you”.

“i think she just cured my autism.  and what a great slogan ‘mics to mutes’ makes.

“before some poor clerk from the dmv (department of miracle validation) at the vatican calls my number, please know I am still an autistic mute so it will just go to voice mail.  but, i have finally been freed from 4 decades of ills.  it turns out being heard may be as close curing all that ails ya as one prescription gets.

“for 40 years, autism has been seen by all to hold me back.  today, autism propelled me forward as my whole self towards my life’s goal of being a successful writer.

“am i dreaming? yes. and this dream i hand pecked.

“az asked specifically what is my experience of hearing my words being read by another.

“well, it is healing.  for several years now, people have read the words i typed and that has allowed me to accomplish a more independent and quality life.   but those words were read.  meaning people ran them through their personality filters and voice boxes and simply got my gist.  the gift az is referring to is completely different.

“my lourdes miracle cure happened at the hangar studios in nyc.  there, my great difficulties in communicating and forming relationships were lifted – permanently.  this spectacular healing happened when a beautifully open woman with a strong, feminine, and southern twang free voice gifted me what i lacked with no cords attached.   my not so virgin az appeared and did not read my gist.  she got out and selflessly let me drive her luxury voice for a full week to transport my 10 years of pecked letters to let my 40 years of not talking be heard.

“i still don’t look normal.  i appear quite messed up and a prime candidate for nothing but pity and patronization with a sprinkling of repulsion and fear. i am disguised as a poor thinker with a filthy squeegee whom most veer to avoid.  so why did az give me the key? because I asked.

“like me, like you, like “THEM”, poetry is best heard.  two of my favorite lines from derrick brown’s poetry are, “dumb as a bomb on a boomerang” and  “kiss like u couldn’t beat cancer”.   being heard is key.

“we are all each other’s cure.  god cares about us all through us all.

“please say this out loud as i am borrowing your voice to be heard again (only a lunatic would give up voice jacking at this point.  plus think of the icky karma involved if one denies an autistic mute such a simple request.) : “i will not be as dumb as a bomb on a boomerang.  i will be here and hear like i couldn’t beat cancer so today i free myself and others from illness and injury.”

“hear and ask to be heard.

“thanks for listening.  healthy b”

Barb and Lois at Hangar Studios in New York City ~ April, 2013

Barb & Lois

 

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Posted in Autism, Barb Rentenbach, i might be you

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The Audio Book is Finished!

Posted on March 29, 2013 by | 7 comments

Barb’s audio book is finished!  Ol’ Barb had me quoting Shakespeare, Stephen Hawking, Ralph Waldo Emerson and many others, as well as her own words…  It was an incredible process, with me wearing headphones, seated in front of a microphone in the sound room (or as I called it – the cave), while Barb and Lois (with Chad, the wonderfully upbeat and accommodating sound/tech guy sat in an adjoining room with a huge picture window so we could see each other) gave me direction, sometimes with hand signals, but more often with Barb typing her instructions, which Lois then read.  Chad alerted me to any technical issues that arose such as when a word sounded scratchy or slightly garbled or if I forgot a word or said a word incorrectly.  All in all it took more than 20 hours, probably more than 30 all told to record.

I am told the audio version of I might be you will be available for purchase and your listening pleasure by next week, but I will leave a link here when I have one.

In other news… I am doing a webinar on Parenting Toward Acceptance, Monday April 1st at 4:00 PM  for DIR Floortime, ICDL with Brenda Rothman, Mother and Blogger – Mama Be Good and Melody Latimer, Mother, Blogger – AS Parenting, Autistic Self-Advocate and Director of Community Engagement, Autistic Self Advocacy Network, ASAN.  I will leave a link Monday morning when I have one.  Until then have a lovely weekend everyone!

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Posted in Autism, Barb Rentenbach, i might be you

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Light it up Blue? – No

Posted on March 28, 2013 by | 49 comments

I must interrupt my previously planned programming regarding the recording of Barb’s audio book, I might be you and mention the “light it up blue” campaign from Autism Speaks, as April is fast upon us.  I know a great many, really well-meaning people will be “lighting it up blue” on at least one day in April, but I urge you to reconsider.  For those of you who love reading links to other relevant posts on the topic, here you go…

Warning April is Coming! ~ Gareeth’s Blog

Autism Acceptance Day ~ This blog was started by Paula Durbin-Westby and originally began as a way to counter the “awareness” that Autism Speaks suggests it is promoting.

Tone it Down Taupe This April!! ~ From Radical Neurodivergence Speaking an alternative to the “light it up blue” campaign!  This is a MUST read and it’s also very funny.

For those of you who can’t cope with yet another link, let me try to explain.  “Lighting it up blue” seems like a perfectly benign and thoughtful thing to do, yet what is meant as a token gesture of caring and thoughtfulness, is actually anything but that.  Lighting it up blue is an ad campaign by Autism Speaks.  It is less about bringing any real awareness about autism or the lives being led by those who are Autistic and everything about branding and promoting that brand that is Autism Speaks.  It is a brilliant campaign.  Most people who “light it up blue” believe they are showing solidarity and support to Autistic people.  Most people would be shocked to know that Autism Speaks is the single most powerful organization promoting fear of autism by using language to describe autism as a “terrifying epidemic,” “a crisis” and Autistic people as “burdens” to society.

This quote is taken from Autism Speaks website:

“Acceptance
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism.”

This sentence encapsulates everything I once believed and thought about autism and my autistic child.  This idea is incredibly destructive and insidious in it’s seemingly benign wording, but it is anything but that.  If we separate out the person from their neurology, what do we have?  How do we do that?  What exactly does this mean?  This sentence from Autism Speaks is exactly what is wrong with the organization.  You cannot accept your child while NOT accepting their neurology.  It is not possible.  Yet this is exactly what I believed for many years to the detriment of my child’s well-being, to the detriment of her self-esteem, to the detriment of who and what she is.  But I didn’t know that.

“Lighting it up blue” is not helping any of our children or those who are Autistic.  The only one who is benefiting from this campaign is the organization who came up with it – Autism Speaks.

So before you head to the hardware store to find some blue light bulbs or open your check book, please, reconsider.   Think how you would feel if this campaign was about your neurology.  Because as Barb Rentenbach has so beautifully written in her book that I am currently recording the audio version for,

I might be you.

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Posted in Autism, Autism "Awareness", Autism Acceptance

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Directed by Barb

Posted on March 27, 2013 by | 7 comments

Barb is a wonderful director.  Here’s an example of yesterday’s adventures and challenges for this verbal, literal-minded, non Autistic as I did my best to embody Barb in all her mischievous, non verbal, antics as described on page 56 of her book, I might be you.  This passage took me more than thirty minutes to get right:  “Freedom.  But the mission is far from complete.  No middle-class chain-link fence to hop and then pay dirt.  No, Sir, our musty mansion sits on acres of green, rocky earth dramatically sloping to the Tennessee River.  I take ever caution to avoid a tumbling fate.  Even the most mischievous princesses don’t swim in dirty water – Southern daddy saviors or not. I assume my most stable forty-five-degree stance and horizontally hike to the neighbors’ inviting castle, remove restricting PJs, and let the fun begin.

 “I think, Wow!  The water is so cold it may make my heart stop.  This sure beats picking or rocking stimulation.  I consider holding off on my 3:00 a.m. phone call-evoking mimicry because I fancy enjoying a longer prerescue soak.  Alas, my scrawny self control fails me again and I sound off with a loud medley of “”you are not going,” “You can’t get in the mail truck,” It’s a fire,” and other such bizarre phrases the sleeping wealthy find disturbing when emanating from their private estate.”

This isn’t a silly story about some southern belle with far too much time on her hands who is up to no good because she’s bored and wants to piss Mom and Dad off.  No, this is a description of Barb’s elopement in the middle of the night to skinny dip in a neighbor’s pool.  It’s funny, but it’s also not funny.  It’s poignant and powerful and yet it says as much about us “normals” as Barb describes those who are not Autistic, as it does about Barb.  Straddling that precarious razor-sharp edge of self-deprecating humor while not holding back any punches is what Barb does best, but say these lines out loud without the right balance of self-reflection, honesty, desperation and rage as well as humor and all those beautiful words Barb painstakingly wrote are lost.

So after each sentence I would glance up waiting for Lois to give me the thumbs up signal before moving on.  On that particular passage there were no thumbs up.  Instead I could see Barb’s bent head as she madly typed things like, “AZ you’re doing great.  But you have to give this more power.”  or “okay AZ you’re taking it too literally, you need to loosen up.” or “Again.   Not so monotone.” And so I would do it again.  And again.  And again.   And again.   At one point I had the thought – I’m not going to be able to get this.  But then I looked over at Barb rapid fire pointing at the letter board and I thought, Damn it.  I will get this.  I have to.  For Barb.  I have to get this right for Barb.  And then I’d take a deep breath and try again.  Because she has trusted me with her words.  She has given me the greatest privilege a person could give another, she has asked me to be her voice.  And that.  That is the single biggest compliment I have ever received from another human being.  And I’ll be damned if I don’t do her words justice.

As a quick aside, y’all (that’s for you, Barb) will be pleased to know I whipped through Chapter 7, which is entitled:  Autistic Sex:  For a Terrible Time, Call.  Because when the words are raunchy that whole upper crust, uptight, WASPY thing works beautifully and it’s funny just because the two are a perfect blend  of lewd and classy, which is… funny.

Em shows Lois how to jump on a pogo-stick

*Em on the pogo-stick

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Posted in Autism, Barb Rentenbach, i might be you

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The Barb Show…

Posted on March 26, 2013 by | 6 comments

I’ve written before ‘here‘ and ‘here‘ about how I don’t always get jokes.  It’s not that I don’t have a sense of humor, it’s just that a great many jokes are hard for me to understand why other people find them funny.  Jokes or anything that starts with the words “Two” (of anything) “walk into a bar…”, or The Onion, (I can’t tell you how many times Richard will thrust some headline from the Onion at me, only for me to say, “wait, what?  I don’t get it.  Why is that funny?”) fall flat.  At this point, Richard now tells me jokes or shows me things that he knows I won’t laugh at because he finds my response as funny if not funnier than the actual thing.  Apparently humor is all the more so when someone is completely clueless. I’m good at that – playing it straight.  

For those who follow this blog, you know by now that I am in the recording studio all week recording Barb Rentenbach’s terrific book, I might be you.  Barb has a wonderfully nuanced and, at times, sarcastic wit.  I can do sarcasm, and wit for that matter, except, as it turns out, when I’m reading aloud someone else’s words.  In addition to this challenge of mine, when I’m nervous, my blue-blooded-upper-crust-WASPy heritage becomes even more pronounced.  So when I’m reading some of Barb’s naughtier bits, not only do my cheeks turn quite pink, I also pretty much stomp all over the delivery of a number of her otherwise humorous sentences.  Because if you read a sentence that is funny as though it weren’t and said it straight, carefully articulating each word as though doing an exercise in drama class, the humor is completely and utterly lost.  The only analogy I can think of that captures this is, imagine reciting the Commodore’s 1977 hit song, Brick House.  “She’s a brick —– ‘ouse, mighty, mighty, just lettin’ it all hang out…” but instead of saying the words as they were meant to be read, carefully articulate each word as though reciting a psalm in church.  I think that gives you an idea of what happened a couple of times in the recording studio.

Fortunately I do have a sense of humor and can laugh at my fumbling.  Barb and Lois were kind and patient.  Even when I had to repeat the sentence until I got the inflection right, they did not fall on the floor in hysterical laughter or poke fun.  I’m grateful to them.  Really.  Because truthfully, that had to have been pretty funny to witness.  The good news is, I was able to get it right… eventually, which is important because this book, this incredible book by Barb and Lois deserves to be heard as it was written, with elegance, eloquence, poignant power, laced with self-deprecating humor.  Every few moments I’d look up to see Barb beaming at me and Lois giving me an enthusiastic thumbs up and I would continue reading feeling exuberant and grateful to be involved in such an incredible project.

Barb showing Em encouragement later that afternoon.

Barb Rentenbach

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Posted in Autism, Barb Rentenbach, i might be you

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The Adventures With Barb Rentenbach in The Recording Studio Begin!

Posted on March 25, 2013 by | 12 comments

I’m speed blogging this morning because I need to be in the recording studio in a little while where I will be at Barb’s mercy.  For those of you new to this blog, read Friday’s post ‘here‘.  For those of you who cannot cope with clicking on a link  – I’m recording the audio book version of Barb’s fabulous book  I might be you which she wrote with Lois Prislovsky.  Barb is non-speaking and writes with a sharp-witted, take no prisoners eloquence.  She is brutally honest in her description of her life as someone who is often mistaken as someone she is not.  For anyone who has ever felt they are on the fringes of society, felt they didn’t “fit in”, judged, seen as an “outsider”, as “other”, as less than, this book will resonate.  For anyone who has ever felt insecure, shunned, rejected, judged, criticized, and/or misunderstood, this book is for you.  I might be you is about how we are more alike than not.

I don’t know that I’ve ever been so excited to go into work!

More to follow…

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Posted in Autism, Barb Rentenbach, i might be you

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“I Might Be You” – The Audio Version – Voice by Ariane Zurcher :)

Posted on March 22, 2013 by | 10 comments

Next week I will be in a recording studio taping the audio version of the wonderful book, I might be you by Barb Rentenbach and Lois Prislovsky.  *Doing a happy dance.  Barb asked me to be her voice a few months ago and without hesitation I agreed!  EEEEE!  Not only will I spend time with both Barb and Lois, but Barb will direct me to make sure I don’t mangle her beautiful words or trample on her often bawdy sense of humor.  It’s all in the delivery; I will do my best to make her proud.  Did I mention, Barb is funny?  She has a wonderful, edgy, R-rated sense of humor.  She avoids nothing and no topic is off-limits.  And while I’m not exactly a prude, I may get a little rosy-cheeked as I attempt to do her words justice, especially that chapter discussing masturbation, sex, or the lack of, and those hunky personal trainers who motivate her…  Taking a deep breath.  For those of you unfamiliar with the book, I wrote about it ‘here‘.  For those of you interested in purchasing a hard cover copy, and why wouldn’t you be (?) you can do so ‘here‘.  (I gain nothing from your purchase, other than the pleasure in knowing you will enjoy reading her book.)

I first met Barb and Lois at the AutCom Conference in the fall of 2012.  Their presentation was crowded, but I managed to secure myself a seat at one of the round tables.  I remember watching Barb type on a key board and being wonderfully surprised by both her self-deprecating sense of humor and how quickly she was able to type.  I admit, I couldn’t keep up as the letters whipped by while Lois read what she was typing.  Barb told of how it took her ten years to write the book because there were so many who simply did not believe she was actually writing the things that were being typed.  The assumption was that Lois or whoever was facilitating her was doing the writing.  But Barb being Barb, did not allow their doubts to stop her.  Now Barb is typing independently, her book has been published and the audio version is about to be recorded!  Woot!  Woot!

Do I need to say how excited I am?

Have I mentioned how honored I am to be Barb’s voice?

Stay tuned next week for ~ Adventures in the Recording Studio with Barb!

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Posted in Autism, facilitated communication, supported typing

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