Tag Archives: Lois Prislovsky

And the Winners Are…

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…

“Barb Doesn’t Talk” ~ Emma

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

 

 

 

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

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

 

The Audio Book is Finished!

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!

Directed by Barb

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

The Barb Show…

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

The Adventures With Barb Rentenbach in The Recording Studio Begin!

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…

“I might be you.”

I might be you. the terrific new book written by Barb Rentenbach and Lois Prislovsky, Ph.D awaited my arrival from our holiday travels.  I am only on page 51, but wow(!) what a book!  Barb is Autistic.  She also happens to be non-speaking and needs support doing almost everything including communicating.  Barb uses facilitated communication to type.  In her own words she explains, “The deal is, I still can’t talk, but I can type on a keyboard or letter board if someone supports my wobbly hand.  The process is called facilitated communication, or “assisted typing.” It is quite controversial, meaning lots of people think it is not really me doing the typing.  This infuriates me…”

For those who are dubious about facilitated communication, Barb now types independently requiring just a hand placed gently on her back.  In October of last year I went to a presentation given by Barb and Lois.  It was riveting, mind-blowing and made me rethink everything I thought I knew, but realized I did not.  Barb wears thick glasses and uses an oversized keyboard to type.  She has a terrific sense of humor, is incredible honest on all topics including extremely personal ones;  this book is a joy to read.  She discusses self-injurious behavior, feces smearing, violent outbursts, which her school viewed as baffling and without provocation and yet in the telling, one realizes this was not the case.

Barb eloquently describes the brutality of other human beings who do nothing to temper their contempt for any who appear different.  Barb writes, “Let me be brutally honest.  Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  Breathe.  Read that again.   “… Most of the blisteringly painful assaults and provocations happened at school – this school, by children who grew up to be you.”  “You.” Take a breath and let that in.  “Children who grew up to be you.”  

Confession:  I am in second grade.  There is a little girl named Louise who wants to be my friend.  She has warts covering her hand, the hand that she has extended to me, the hand she wants me to hold, only I will not.  I am the new kid.  I am well aware of the unspoken rules of the playground.  You do not hold Louise’s hand.  You do not allow yourself to be seen with Louise.  You distance yourself.  You play alone if need be.  To be seen with Louise is to be like Louise.  Flawed, with warts for all to see.  Instead I tell everyone I moved from a foreign land and spoke another language, a language only I and the village I have moved from speak.  I lie about my family, I lie and say we lived in a field with a house made of straw.  I told these lies because I thought they made me seem exotic and fascinating.  I lied because, already at the age of seven I believed I was less than, not good enough, destined to be like Louise, with my hand outstretched to others, only to be rejected time and time again.

Barb writes about how she is unable to eat without making a mess, as hard as she tries, her hands do not do as her mind bids them.  At lunch a student reports her messy attempts to eat her sandwich and is told by a teacher that she will have to eat somewhere else, away from the others as she is, “making the other children sick.”  This book (and again I am only on page 51) made me stop and reflect on my own behavior.  Am I really as empathic, compassionate and wonderfully kind as I would have everyone believe?  Do I make assumptions?  Do I hold beliefs about others because of the way they appear?  What are my hidden prejudices?  Am I able to admit to them?   Who among us can say without hesitation that were our bodies not able to respond in the way our brain and intellect would have us, were we ridiculed and shunned as a result of that disconnect, that we would maintain our composure, would not act out in protest?

“Am I so different from any of you?” Barb asks.

Em sledding