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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“Proof” of Competence

Posted on May 15, 2013 by | 45 comments

Last night I asked Emma, “Do you want me to read Anne of Green Gables or something else?”  I was seated at the computer responding to a comment left on yesterday’s post.  Em was leaning over my shoulder looking at the computer screen.  She pointed and said, “Look!  There’s Harvey and Tracy and Pascal!”

“Yeah!  I’m just finishing up here, Em.  Did you brush your teeth?”

“Uh-huh,” she answered.  Her one hand gently rested on my shoulder, her head about an inch from mine, she twirled her string and continued to peer at the screen.

“So Em.  Should I read Anne of Green Gables?”

“Nah.”

“Oh!” I said, surprised.  Turning toward her, I looked at her, “What do you want me to read then?”

“This,” she said pointing to the screen.

“You want me to read the blog to you?”

“Yes,” she said.

I mentally scanned yesterday’s post, suddenly wondering if I’d written anything I would feel badly to have her read or hear.  And as I did so, I marveled that this was something I was having to be concerned about.  Several years ago, had someone cautioned me to be careful about what I wrote on this blog and gave the reason for their concern as one day my daughter would express an interest in reading it, I would have laughed and assumed the person did not understand my child.  The idea that my daughter would be interested in anything I wrote, let alone anything I wrote on a blog about autism was the LAST thing I was worried about.  And yet, last night, there I was, and not for the first time, rereading a post I’d written with a critical eye.  This says far more about me and my limitations in imagination, as Anne of Green Gables would say, than about my daughter who continues to surprise, astound and prove us wrong.

That my daughter continually “proves us wrong” is something I am working hard to change, because again, this says far more about me and my limited thinking than it does about her.  Why should she need to “prove” anything?  So many of the various therapies used for Autistic children spend an inordinate amount of time requiring our children to “prove themselves” to us.  Often, having done so, we then change the question or the format, suggesting that this is for their own good as they need to “generalize” the information.  We ask again, insist that the answer be given within a certain time frame, insist that it be given with specific wording or in a different format, as though their first answer wasn’t enough to convince us.  Who exactly is benefitting from these exercises?  We say we are doing this with their best interests in mind.  We tell ourselves we are “teaching” and this must be done in order for them to learn, but it seems to me, it is often the other way around.  It seems to me these exercises are done to convince the skeptics among us.

We do not treat our Autistic population as equals.  We do not presume Autistic people are competent, often we believe they are incompetent and ask that they prove to us their competence again and again.  We pity them and often their families too.  Organizations set on “helping” those who are Autistic discuss their work initiative programs, their mentoring programs, (almost always it is non Autistic people mentoring those who are Autistic) yet fail to see how their well-meaning programs are biased, do not presume the competence of those they suggest they want to help, do not include Autistic people in the planning and implementation of such programs and express shock when their various programs are met with resistance within the very population they say they are helping.

This is really at the crux of the most astonishing thing I’m learning.  It is not that my child is limited.  It is that I and others like me have been limited in our thinking about her and those like her.  It is this, that I hope I will see change in my lifetime.

“Read the blog,” Emma stated as she crawled into bed last night.

And so I did.

Nic and Em ~April, 2013

Nic & Em

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Posted in Autism, Parenting, presume competence

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Parenting & Presuming Competence

Posted on May 14, 2013 by | 82 comments

I am reading Anne of Green Gables to Emma.  Three years ago it would not have occurred to me to read her a book that I might have enjoyed at her age.  Three years ago I was “reading” picture books to her before bed.  Three years ago I did not assume she understood the stories in those picture books.  Three years ago I not only did not assume my then eight year old child understood what I read, but I also did not assume she understood 90% of what was being said to her.   Because I did not assume she understood I treated her as though she couldn’t understand.  I treated her as though what I thought was a fact.  Then I learned I was wrong.   Not only did I learn my assumptions were incorrect, I began to see how those assumptions caused me to act and treat her as less capable than she actually was.  I treated her as though she couldn’t and I didn’t see how this attitude was hurting her.  Instead of teaching her to do things for herself, I did them for her.  It was quicker, easier…

I wrote a post not long ago ~ Presume Competence, What does that mean exactly?   People have a tough time with the idea of presuming competence,  let alone putting that idea into action.  I get that.  I did too.  Here was a child, my child, a child we had been told was capable of this, but not of that, a child who was treated by society as much younger than she actually was, a child who, because of her unreliable language did not have conversations with us, did not answer most of our questions, never asked us questions, and so we assumed had little if any interest in such things.  We made the mistake of assuming language retrieval issues were indicative of lack of intent and desire.  We made the mistake of limiting our thinking and therefore limited our child.  We thought we knew, until we didn’t.  We behaved as though what we thought was true and our behavior and actions or inactions fed into that erroneous thinking.

I’ve spoken a great deal about the brilliant documentary by Gerardine Wurzburg, Wretches and Jabberers.  I continue to urge everyone I know to watch it because it is the best illustration I know of, that explains the concept of presuming competence and what can happen as a direct result of doing so.  It is a highly entertaining, moving documentary following two (mostly) non-speaking Autistic men as they travel the world meeting other non-speaking Autistic people who are all far more capable than society believes.  Many are in “life skills” programs or work initiatives doing menial tasks like paper shredding and folding towels.  They type about their mind numbing boredom and brutal frustration they feel as a result of being treated as far less intelligent than they are.

Presuming competence is an act, it isn’t just an idea.  Presuming competence is the single most powerful action we have taken that has directly helped our daughter flourish and grow.  Nothing, absolutely nothing else we’ve done has helped Emma as much as presuming competence.  When we stopped limiting her with our limited beliefs of what she is or isn’t capable of and began giving her the information and materials she needed, she has taken off.  In school she is being taught grade level science, at home she is being taught grade level geography, I am reading age level fiction and nonfiction, she clears her own dishes, cleans them and puts them away.  She sorts her own laundry, helps fold it and knows how to make pancakes without assistance.  She takes a shower on her own, has learned to shampoo her hair and brush it afterwards.  She brushes and flosses her own teeth with minimal support, she dresses herself.  When it is clear she needs help learning to do something, we help her, without admonishment, without distress, but instead with the knowledge that she will eventually learn to do it on her own.

Presuming competence does not mean we expect her to know how to do something without support and instruction, it means we assume she can and will learn with appropriate accommodation.  This is is a very different way of thinking than either assuming she can’t do something and never teaching her, or teaching her, but requiring her to prove her knowledge over and over before moving on.  With reading comprehension we realized we were asking the wrong questions.  Often we were asking her to answer questions that were not obvious to the story.  When she couldn’t answer, we’d dumb down the reading material and then wonder why she wouldn’t pay attention.

In the beginning, presuming competence felt like a leap of faith.  It scared me.  I didn’t want to get my hopes up.  I didn’t want to feel the disappointment that I knew I’d feel if I was wrong.  It felt like a massive disconnect.  But presuming competence is not about my ego, my expectations or anything else involving me.  Presuming competence is about respecting my daughter and respecting her process.  It is about honoring her.  It is about giving her what she needs to flourish.  It is about dispensing with what I think, believe and have been told.  Presuming competence has nothing to do with my fears of success or failure.  Presuming competence is not about me at all.  It is all about my daughter.

Harvey, Tracy, Pascal & Em @ USFEmma takes the stages with Pascal, Tracy Thresher and Harvey

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Posted in Autism, Parenting, presume competence

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The Wisdom of Peyton Goddard

Posted on May 13, 2013 by | 12 comments

Peyton Goddard, wrote a memoir with her mother Dianne Goddard and Carol Cujec entitled, i am intelligent.  It is an unforgettable book.  Recently, Peyton gave a presentation in San Diego, where she typed, “After decades of torture, still each dawn I struggle to feel my worth.”  You can read her entire presentation ‘here‘.

“After decades of torture, still each dawn I struggle to feel my worth.”

Peyton was not tortured by her autism.  Peyton was tortured by non autistic people who cruelly and viciously hurt her over and over.  People who used the fact that she could not use her voice to speak to protect themselves.  I would like to believe we are moving away from a world and society where abusing people we have deemed “inferior” is done.  I would like to believe that, but I cannot.  The abuse of Autistic people at the hands of those who care for them, whose job it is to help them, continues.  The abuse of Autistic people by society, continues.  The abuse of Autistic people by those who are either ignorant or misinformed continues.  The abuse of Autistic people by those who pretend it isn’t abuse because they choose to believe Autistic people are incapable of feeling or really understanding what’s happening to them and therefore it’s okay, continues.

“Estimate I that anger in this pesty world is because pierced persons think hurting others will strip their own hurts away.” ~ Peyton Goddard

In her book Peyton writes about forgiveness.  Forgiveness of those who have hurt her the most.  Peyton Goddard is leading the way, with wisdom, kindness, forgiveness and compassion.

Peyton Goddard – a non-speaking Autistic woman, assumed incapable, presumed incompetent – has a great deal to teach us.

Three Non-Speaking “Teachers”:  Larry Bissonnette, Peyton Goddard & Tracy Thresher

TASH 6

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Posted in Autism, i am intelligent, Peyton Goddard

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The Magic of Connection

Posted on May 10, 2013 by | 43 comments

At a certain point during Richard’s radio show  the other night, where he was featuring Moms, he asked me about those years when we were determined to find a cure for our daughter.  I didn’t want to take up time on the show to talk about all of that because there was so much to cover, but also because it makes me really sad to talk about it and I also know it is hard for many of my Autistic friends to hear, two of whom were guests on the show and many more who I knew were listening!  I try hard not to live in regret, but I’ve done things that I really DO regret.  Things I really do wish I could go back and erase and do again differently.  More than anything, all those therapies and bio medical treatments we did, fall into that folder labeled “Things I wish I could do over.”

My reluctance to talk about all of this the other night on the radio wasn’t because I don’t think it’s important as much as it’s really painful to talk about and I know, for many of my friends, people I love dearly who happen to also be Autistic, it is very painful for them to hear me talk about those years, all those years when I was so intent on curing my daughter.  It may remind them of their own upbringing.  It may bring up all those devastating feelings of being unworthy or that they were somehow damaged or diseased, or any of the other hurtful words people use when discussing autism, that hurt them.   So to my Autistic friends, please skip down to the final paragraph.  The last thing I want to do is cause more pain and suffering to those I love.

At the time, after Emma’s diagnosis was given, I believed autism was something that could be “treated” the way one treats a disease.  Only it isn’t a disease.  But at the time I thought things like vitamin supplements , homeopathic remedies, therapies like ABA and diets could actually remove the “autism”, that these things would somehow transform her brain from an Autistic brain to a non Autistic brain.  I know it may sound over the top, even ridiculous to many, but at the time, I wanted to believe and so I bought into the idea that autism could be ‘removed’.  The concept of someone being pressured into learning to “pass” as non Autistic and the massive emotional and physical toll that inevitably takes, was not something I knew about at the time.  It never occurred to me to wonder what the fallout might be or how my own child’s self-esteem might suffer as a direct result of what I was doing and saying.

Over time, as I kept trying different things, which culminated in going to Central America for stem cell treatments, I continued to believe, being the very best mother I could be, meant doing everything I could to “remove” her autism.  I believed all those words that are used to describe autism: disease, affliction, epidemic and crisis.  Autism was BAD.  Autism meant all kinds of things and none of them were positive or beneficial.  So that’s what I pursued – a cure.  And I pursued a cure with the same dogged persistence I now apply to changing how autism is viewed by others.  Where I once was determined to change my daughter, I am now determined to change society’s views of autism and, it must be added, society’s views of Autistic people.

You cannot talk about autism without talking about Autistic people.  Yet people do all the time.  They talk about autism as though their words will have no affect on those who are Autistic.  But you can’t do that. When we talk about autism we ARE talking about our Autistic children.  We ARE talking about our Autistic friends.  We ARE talking about Autistic people.  What we say, how autism is depicted, DOES impact those who are Autistic .  It does directly affect how others then treat them.  To pretend that all the derogatory language used has no direct effect on Autistic people is ignoring that fact.  And this is where all of this no longer is just about my daughter and the risks I took and the impact my actions have had on her.  This is about something far bigger than any one person.  This is about a segment of the population who are Autistic and the fallout they must cope with from all of us talking about them as though it wasn’t about THEM, but instead was about a word – that word being – Autism.

Toward the end of the radio show, Lauri Swann spoke of how her son, Henry developed a relationship with his mentor Tracy Thresher and how transformative that was for him.  I reflected on how magical it was for Richard, Emma and me to visit Lauri and her family during the screening of Wretches and Jabberers this past April.  We reminisced about the evening before the screening, when we all went back to Lauri and Russ’s home and everyone sat around their dining room table typing to one another.  The only word I could come up with to describe that visit was “magical“.  And it was, because like the Autcom conference last fall and the Syracuse conference this past winter, being in an atmosphere of inclusion, where every single person is treated with the same respect as anyone else, where all are treated equal, is magical.  How did we move so far from those words in the Declaration of Independence ~ “We hold these truths to be self-evident, that all men are created equal”?  How did we get to this other place, where an evening like the one I’ve just described is considered out of the ordinary?

Now, sitting here writing this post, I am thinking about two more magical days and evenings when Ib came to New York City and stayed with us.  Ib is like family.  My children adore her.  My husband adores her.  I feel honored to know her, let alone call her my friend.  I don’t know how to talk about all of this when lines are drawn, when words are used that separate and divide.  I can’t do that and I don’t want to live in a society that does.  What people do not understand fully, or cannot completely appreciate, is this – when we stop dividing people into categories of us and them – we open ourselves up to the experience of being united, of really feeling that indescribable magic of connection.   The beauty of belonging.  The joy of interacting with our fellow human beings and rejoicing in our diversity.  There IS magic in that.  This is what I wish all human beings have the opportunity to experience.  This is what I hope I will live long enough to see occur on a grand scale.

Henry & Tracy during our magical visit with Lauri’s family

Henri & Tracy

Adrianna, Amy Sequenzia, Em & Me
Adrianna, Amy, Em and Me

Nic & Ib on the High Line

Nic & Ib

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Posted in Autism, Parenting, Stem Cells

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Having it All Often Means Doing it All

Posted on May 9, 2013 by | 25 comments

*The title of this post is said in a joking, not exactly sarcastic way, but certainly not in a serious way.  Throw in an eye roll as you read and a knowing grin, and you’ll get it!

So much to tell you, but where to begin?

For Mother’s Day my wonderful husband decided he would interview me on his radio show and asked if I wanted to invite a couple other moms to come on  the show too.   “Yes, please!” I said and promptly invited my friends, Ibby Grace of the blog Tiny Grace Notes (AKA Ask an Autistic), Paula Durbin-Westby, who has two blogs, one with her name as its title and the other – Autism Acceptance Day (which is a terrific resource filled with interviews among other things) and Lauri Swann Hunt of the fabulous website and blog Ollibean, where both her son Henry and Amy Sequenzia often post among many other wonderful writers.  The show aired last night at 8:30PM – 10:00PM Eastern Daylight Savings Time and has been archived ‘here‘ for those who would like to listen.  We do not have a transcript of it yet, but my fabulous friend Alyssa of the blog, Yes, That Too, suggested we break it into ten minute chunks, which means we need eight more people to volunteer.   Anyone who is so inclined can contact me here or at emmashopeblog@gmail.com and we will get a transcript written!

I meant to write a post about all of this yesterday so anyone who wanted to listen live, could, but Richard came down with some sort of stomach bug that kept him up for the better part of the night and Em woke up in the middle of the night complaining of a sore throat.  When I went to her she was burning up, so I stayed with her for the rest of the night.   By yesterday morning, which was also the first day of my “play date with jewelry” trunk show, I realized, I was not going to be able to keep all the necessary balls in the air.  It was that moment when you realize the reality and what you had envisioned, were not meshing even remotely and so priorities needed to be set.  Nic, who was off early to go on a three-day field trip, made it out the door without mishap.  A doctor’s appointment for Em was secured. Joe, Em’s devoted, dedicated and all around amazing therapist, was called in for reinforcements. Richard was checked in on and given liquids between preparations for my trunk show.

By the way, the show continues today, for those who might be interested in playing with jewelry and seeing my Transitions Collection, which I’ve finally gotten up on my Ariane Zurcher Jewelry website, and joining me to play with the real thing and so I can give a live demonstration of all the various possibilities, many of which the website does not yet have or do.

AZ jpg evite

So given that the day was not proceeding as optimally as planned, it was kind of fitting and perfect that Richard, albeit, groggily, insisted that the radio show (dedicated to motherhood and all that entails) must go on as planned!  So it did. And other than a couple of minutes when Richard and I were inexplicably tossed out of the show, it was great fun, everyone was wonderful and I think Paula Durbin-Westby may need to seriously consider hosting her own radio show in the foreseeable future!  As I said at the end of the show, it is these Moms and women like them, who have helped me be a better mother to both my children.  I am so lucky and very, very grateful.

Merlin Assists in Preparing for the Trunk Show

Merlin:Jewelry 

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Posted in Autism, Autism Acceptance, Parenting

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The Mean Voice

Posted on May 7, 2013 by | 22 comments

I have struggled with a mean voice in my head my entire life.  “You messed up,” “You can’t do anything right,” “You’re a failure”, “What were you thinking?” “Why did you do/say/think that?”  “How could you not have known?”  When I was young I thought I was the only one who had it.  I believed the voice.  I thought it spoke the truth.  I felt crushed by it.  It was a condemning voice and I thought it would help me become a better person if I listened to it.  I was wrong about that.  These days I don’t allow myself to believe it, but now and then I can’t help myself and those are the days when everything is harder.  Those are the days when the people I love will suffer because that voice isn’t content to stay internal for long.  No matter how hard I try, no matter how much I tell myself I’m not going to repeat those hurtful words to someone else, I end up doing so because self-hatred is never kept completely contained.  Those of us who struggle with self loathing tend to hurt others a great deal, which then feeds our self-loathing.

“Self knowledge avails us nothing.”  ~ Big Book of Alcoholics Anonymous.

Awareness, acceptance, action.  These are the steps I know to take if I want to change my behavior.  These are the things I must do on a daily basis, sometimes hour by hour.  These are the things I stumble over, like giant boulders in my path.  Someone else yelling at me to stop listening to the voices does NOT help.  Someone else scolding me for having hurtful voices in my head only ADDS to my stress and the noise, it does not lessen it.  Awareness – I have to acknowledge I’m listening to the cruel voice.  Acceptance – I have to accept I’m in a dark place, that this is what is going on, that this is my reality in this moment, without judgement, without condemnation.  Breathe.   Action – this is the most difficult piece.  What actions can I take now that I’ve become aware and have accepted that this is where I am?  Often action has nothing to do with any of it.  For me action works best in the form of a small or big act of kindness. If I’m in self-pity or when I have tremendous ego, an anonymous act of kindness is by far the most helpful and centering thing I can do.

Feel the pain of the moment but do not be controlled by it.  Feel the anger/irritation/impatience, but do not allow it to take the lead.  Can I do this?  Can I just allow myself to be?  Can I reach out with love instead of anger?  If the answer in this moment is no, then can I just be silent, without turning my anger and frustration inward?  Can I just do nothing at all until this passes?  These things are easy to write about, but so much harder to practice.  And yet I must continue to pick myself up when I fall and practice what does not come naturally or easily because that other road is one I have been down.  I already know where it leads.

For an expanded upon and wonderful post on the mean voice please visit: hereirawr’s Balance Isn’t a Destination and Gray IS Gorgeous!

Road to hell

 

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Posted in Addiction, Marriage, Parenting

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Where There’s Anger There’s Fear

Posted on May 6, 2013 by | 19 comments

It’s taken me decades to figure out that whenever I am angry, fear is lurking.  All kinds of people talk about the association between anger and fear, but it was not a thought I was able to appreciate.  It’s still not the first thought I have when I am angry about something.  It’s not even the second thought.  In fact, I’m lucky if it’s something I can remember at all when I’m angry.  Yet, if I look back on all those years when I was so very frightened of my daughter’s diagnosis and what I assumed that meant for her future, I see how linked the two were.  But it was the fear that grabbed me by the throat and no matter what I did, it seemed unaffected and unwilling to let me go.  It was the fear that made itself known to me; the anger was far more subtle and insidious.

“When you sense a threat  your mind generates fear and anger.  The fear you generate is part of a flight response from your physiology. Anger is the emotional energy you generate for the fight against that perceived threat.  What can be confusing is that your mind creates fear and anger even when the threat is just imagined.” ~ Pathway to Happiness

I understood things like the above paragraph.  In a calm state of mind, it made perfect sense that my anger was rooted in tremendous fear, even if imagined.  What did the future hold for my daughter?  How was she going to get through life?  How would we be able to keep her safe?  How would she fend for herself?  Would she be able to fend for herself?  Who would take care of her once we were gone?  Fear.  Fear.  Fear and more fear.  And then, without even realizing it, I would find myself furious.  Enraged.  And my rage found the perfect target.  Autism.  Autism was what I was furious with.  Autism was what the problem was, so it stood to reason that if I could remove it, all would be well.  So this is what I set out to do.  Except that my daughter happened to be Autistic.  But if I didn’t say it that way I could continue to separate the two.  I could continue to tell myself I was fighting the autism and not her.  I could continue to believe that my anger with autism would not affect her.

“Anger is the natural emotional reaction to what the mind and imagination are doing.  The way to overcome anger is to change  how the mind imagines stories and how much you believe them.  When the mind imagines painful scenarios you naturally produce anger.  To reduce and eliminate the anger it is necessary to shift the stories that the mind imagines.” ~ Pathway to Happiness, Understanding Anger

That quote more than any other sums up exactly what happened.  I had to change the story that my mind was imagining.  Instead of thinking – my daughter is locked inside an autistic cage that I need to find the key to free her from – I had to examine everything I thought I believed and start from scratch.  I had to rethink how I viewed autism, my daughter and how the two were completely intertwined and one.  I had to dissect all my preconceived ideas about autism and Autistic people and what I thought that meant.  I had to be open to other ideas about it.

For me that began with reading books.  First books like Representing Autism by Stuart Murray, Unstrange Minds by Roy Richard Grinker and Autism and Representation Edited by Mark Osteen and then I found blogs written by Autistic people, see the Resources page on this blog.  From there I began developing relationships with Autistic adults, not just the occasional interaction, but real friendships.  People I have grown to love deeply.  I had to find people who were non-speaking, or spoke intermittently.  I had to find people who were obviously Autistic and couldn’t “pass”, I had to spend time with those people.  And what I found was that far from being miserable, these people were living their lives, doing things, had found purpose and meaning and were active in their communities.  The very things I had been told could not, would not be possible for my child.

“Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and freedom.” ~ Victor Frankl, Man’s Search for Meaning 

A and E_2185And so I found I had a choice.  I could choose to continue to live in fear of autism and all that people were telling me Autism meant or I could choose to embrace my Autistic child, learn, enjoy and let go of all that anger and fear as it came up, as it continues to come up.  Each time I feel fear and anger, and I do on a daily basis, I now know I have a choice.  I can fall into the fear and anger or I can step back from it, realizing it’s a mirage, realizing that as painful and real as it feels it is not a fact, it is a construct of my thinking and I can sit with it and not react to it.  Because my fear has me running away and my anger has me shouting, either action keeps me apart from others.  I have learned that the answer to both is to do something else.  And that is this – walk towards instead of away, speak lovingly instead of shouting and pushing away.

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Posted in Autism, Autism "Awareness", Autism Acceptance

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Rethinking Unhappiness

Posted on May 3, 2013 by | 43 comments

I was alerted to an article written by Dr. Michael Oberschneider entitled, Ask Dr. Mike: Expecting and Anxious About Autism.  In the piece he writes, “Some of the happiest parents I know (both personally and professionally) have children on the Autistic Spectrum.”  In the comments section people weighed in with their thoughts.   Many parents wrote of their outrage (and a few of their disbelief) that Dr. Mike suggest “happy” parents of Autistic children even exist.  They seemed to equate happiness with a lack of concern.  A number of parents suggested that Dr. Mike was simply wrong and refused to believe that he could actually know such parents.  One person went so far as to suggest he was trying to trump up more clients, which is an interesting idea, but the logic of that argument eludes me.

Before I go any further, I have to say this – there was a time, not so very long ago – when I was one of those parents who was incredulous that anyone could be “happy” and have an Autistic child.  I no longer feel that way and the reason is, I stopped trying to cure my child of herself.  I feel sad that this was my experience.  I wish it hadn’t been.  I know it negatively affected my daughter.  I know it negatively affected my entire family.  I know now that the depression I felt was because I believed I could cure her.  I was angry, I was depressed, I believed that no one could truly understand.  I felt alone and isolated in my sadness and rage.  I was engaged in a war only to realize I was fighting myself.  I know this now, but I didn’t then.  I wish I could hit the rewind button and do it over differently, knowing what I know now.  But I can’t.  I have to move forward.  In moving forward I am aware that I owe it to my daughter to make a living amends to her for my past mistakes.  Mistakes that I cannot know and will never know how badly they impacted her. Part of my living amends to her, beyond trying my best to be the best mother to her (presume competence) that I am capable of is to counter the negativity and fear that continues to swirl around the very mention of autism.

Today I am one of those happy parents Dr. Mike mentions.  I have two beautiful children, one who happens to be not autistic and one who happens to be Autistic.  And yes, there are times when I worry about both their futures.  There are times when one of them does something or is going through something and I find myself concerned.  Concern is one of those feelings, like worry, that actually does not help my child.  These are things I feel and it is up to me to figure out what to do about them.  Are there actions I need to take that will help my child get through whatever it is that is troubling them or causing problems?  Are those problems something I can control or are they things that require patience, compassion, love and support?  What can I do to accommodate my child so that they might better cope with whatever is going on?

The single biggest issue I confront repeatedly with having a child who is Autistic, with unreliable verbal language, is the misinformation, the fear, the misperceptions and the ignorance of those who meet her and what they then assume because of what they see.  Fear coupled with ignorance = prejudice.  We fear that which we do not know or understand.  We make judgments, we believe ourselves to be superior, we then behave accordingly.  None of this helps anyone.

It makes me sad that I was once so unhappy and that I attributed my unhappiness to my child.  I know now this was not true.  It wasn’t my child who made me so unhappy, it was my perception of her and what I believed that meant that caused my unhappiness.  I assumed things about her that I now know are not true.  They are not fact.  What is true, what is a fact is this:  My Autistic child is far more capable than most people give her credit for.  My autistic child does not use language the way most people expect.  Through a great deal of hard work and over the course of many years my daughter is learning to communicate through typing.  She has proven repeatedly that she is not only aware of what goes on around her, but she is extremely intelligent and capable.  At the moment she requires support to communicate, though we believe she will not require that level of support in the future.

My happiness or unhappiness has nothing to do with either of my children or my husband or my marriage.  My ability to feel joy is an inside job.  It takes work to excavate all those old beliefs, to throw everything you think you know and believe and start over.  I encourage anyone who is suffering and believes their suffering is directly the result of their child’s neurology to examine their beliefs.  Throw it all out.  It isn’t serving you and your suffering isn’t helping you help your child.  Isn’t that ultimately what all of this is about?  Aren’t we all trying to be the very best person we can each be?  Isn’t that what we hope and want to model for our children?  Isn’t that the point?

April 2013 – With my beautiful friend Lauri, another “happy” parent 

A & L

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Love

Posted on May 1, 2013 by | 12 comments

For those who missed the fun, yesterday was the #AutismPositivity2013 Flashblog where people sent in thoughts about the theme “1,000 Ausome Things” in an effort to counter at least some of the ongoing negativity surrounding autism and those who are autistic.  All the posts have been compiled ‘here‘.  I helped tweet, share, google+ and pinned the posts as they came flooding in and WOW!  It was exhilarating to read so many words written by Autistic people, young and not so young, non-autistic parents, Autistic parents, siblings, cousins, educators and everything in between.  There were bullet points, numerical lists, stories, photos and even a couple of videos!

It was wonderful to see so many coming together over a shared idea.  A moment when the common goal was to rejoice.  A tiny moment when it wasn’t about anything other than what was AUSOME about a neurology we have come to call autism.  And it reminded me of something.  It reminded me of a time in my marriage when a therapist suggested Richard and I make a note every night, not of all that was wrong, or a list of our grievances, but a list of all the other had done right.  A list of all that was ‘good’.  These are subjective words, but we understood the goal was to look for the positive in the other.  And guess what?  It was the single best advice anyone ever gave us!  When we concentrated on that which the other was doing that was kind, took notice of the little gesture made, the loving glance, the dish that was put away, the trip to the store for the milk that no one had remembered to buy, all those little acts each person did, when those were noticed, they added up to something bigger.  They added up to an expression of love neither of us could have voiced.

That’s what yesterday’s Flashblog was about…  love.  Self love, love of another, hundreds of voices expressing love.

This image was created by the very talented Lori Miller Degtiarev of the blog A Quiet Week

Lori Miller Degtiarev

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Posted in Autism, Autism Positivity, Marriage

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Emma’s Hope Book Celebrates 1000 Ausome Things #AutismPositivity2013

Posted on April 30, 2013 by | 4 comments

Today is 1,000 Ausome Things ~ The Autism Positivity 2013 Flashblog Event!!

For those of you who want the history of the Autism Positivity Flash blog in all it’s glory, this post from Outrunning the Storm is essential reading.

This flash blog event asks that we focus on “ausomeness” to counter all the negativity, fear, and very often, misinformation that surrounds autism, our Autistic children and Autistic people.  There is no way I can detail all the Ausome things about autism I’ve learned in the last year, let alone last nine years, since my daughter was first diagnosed.   So instead of using words, I am using images. Please enjoy this scrapbook, all taken in the last two months.

Larry Bissonnette (star of Documentary film – Wretches & Jabberers) taking Emma’s photograph

Larry takes Em's photograph

Emma types with support from Pascal Cheng.  Tracy Thresher (star of Wretches & Jabberers) and Harvey Lavoy sit to the left.

Harvey, Tracy, Pascal & Em @ USF

Emma with her friend Henry

E&H -Friends

Barb Rentenbach (author of the book, I might be you) – cheering Em on 

Barb Rentenbach

Emma laughing with Ibby (of Tiny Grace Notes)

Em and Ib

And this… just this… which if I could only send in one image, one snippet, it would be this – Emma soars and yes she and everyone else pictured above are the very definition of the word – AUSOME!

 

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Posted in Autism, Autism Positivity, Autistic Role Models

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Autism Positivity & a New Blog ~ Where Art & Life Meet

Posted on April 29, 2013 by | 9 comments

Tomorrow is the Autism Positivity 2013 Flashblog event!  Anyone can make a contribution, whether you have a blog or not.  ANYONE!  Just follow the instructions on the link above and submit your word document, post, photo, poem or whatever you’d like.

cropped-autismpositivitybanner3

When I began Emma’s Hope Book just over three years ago, I did it because it seemed logical.  We wanted a document, a place to write notes, a place we could write our observations that extended family could read if they wanted.  Like those annual letters some people send out, updating family and friends about what’s happening in their and their children’s lives, this would be a place Richard and I could write about our daughter.  Never did it occur to me to ask our daughter what she thought, or consider how she might feel about having her childhood and life dissected for anyone to see who might stumble upon this blog. 1) I didn’t understand yet that she might be able to understand what a blog was, let alone able to read it, and 2) that she might have an opinion about it one way of another.

I cannot actually express how horrible it makes me feel to realize how wrong I was with not just the assumptions I made about my daughter, but the decisions I made and how I behaved as a direct result of those assumptions.  As horrible as it makes me feel, I have wondered and begun to ask her how it has made her feel.  My daughter surprises me consistently and constantly.  She shows me that what I think I know is usually incorrect.  She has countered my worries with her love of performing, her desire to be heard, her wish that people would listen to her.  (This is important and not remotely the same as my writing here about my thoughts and feelings.)  But I’m only now beginning to fully understand all of this.  And I cling, desperately at times, to the idea that at least I am beginning to “get it” now.  At least I have the chance to do things differently.  At least I have the opportunity to respect her, to ask her, to listen to her, to honor her and not assume she doesn’t understand just because she doesn’t look directly at me, nod her head and say some version of, “Yes, Mommy, I understand what you’re saying and this is what I think and believe about what you’ve just said.”

So no.  I didn’t know when I began this blog and I never once stopped to consider how it might feel to her to have her mother writing about her as I have, as I do.   But I am and I continue to, though now with her permission, and as I do, I cycle through the feelings of discomfort and I also know that writing is something I must do.  It isn’t a choice.  It’s what I do.  Hence the creation of my new blog ~ Where Art & Life Meet.  A second blog!  A blog about life, marriage, parenting, art, design and everything in between.  This morning I published the first post for it.  Please go over and say hello.  It’s more of an image friendly blog, a kind of blog meets Pinterest format and if you like it, I hope you’ll follow it. header-title

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Posted in Autism, Blogging, presume competence

Watch Emma Fly!

Posted on April 26, 2013 by | 33 comments

Years ago Richard and I went to hear Temple Grandin speak (this was before the documentary about her had been made).  She had slides and gave a terrific talk about what it was like growing up as an Autistic child in a not autistic friendly world.  After the talk she went into the front entrance of the auditorium where she sat near a table displaying her latest book.  I went over to tell her how much I enjoyed reading her two previous books and to ask her if she had any suggestions for me regarding Emma’s inability to stay seated when on an airplane  prior to take off and again once we landed.  (This was something Em had a terrible time dealing with and would get a look of abject panic, before launching into a high volumed scream that had all the passengers covering their ears.  We were pretty desperate to find some way to help her cope.)

Temple said she was pretty sure there were sensory issues at work and gave some suggestions of things we might do to mitigate those.  I remember thinking that Temple in no way resembled my daughter and then made the assumption that Temple must have been far more able when she was my daughter’s age than my daughter currently was.  Whether this is actually true or not is something I cannot know, but a version of this thought process on my part is one I’ve repeated over the years on more than a few occasions.  So desperate to quell my fears and worries I have sought to find my daughter’s adult replica.  I have made the mistake of comparing an adult, possibly an adult who is now even in their 30’s, 40’s or even 50’s, and then drawn conclusions about what I imagine they were like when they were my daughter’s age.

Comparing Em to any adult has proven to be unhelpful to me, to my daughter and, I imagine to the person I am comparing her to, if they were aware I was doing it.  In addition, comparing a child to an adult is never going to give an accurate view of anything, there are too many variables involved.  And this kind of thinking completely ignores the fact that all human beings progress, evolve and change.  This is an obvious statement when applied to a non autistic child, but somehow I came to believe that my Autistic child was different.  I worried she would not progress.  I worried she would not be able to learn.  I worried because, in part anyway, we were given information about our Autistic child that has been proven to be not true.  We were given information that was in direct contrast to presuming competence.  Just as Emma no longer suffers when traveling in an airplane, she also now reads and writes and has, as of three days ago, mastered the complicated skill of a “catch” at her trapeze school.

Excuse me while I jump up and down while wiping away my tears of joy.  Emma wasn’t able to do a catch upon her first try or second or even third.  Em has been going to trapeze school for more than two years.  She also goes to gymnastics once a week where she has been working hard for almost three years strengthening her core muscles.  In the last month she is now able to do a cartwheel.  Emma began learning to type two and a half years ago.  She practices every day.  She practices reading too.  She practices and works really hard.  None of this has come easily or automatically, there is no “magic” involved, unless magic means being given the opportunity to work toward her strengths, to learn and practice and the belief that she can and will succeed.  Watch that video again, because all her hard work is paying off.  Watch Emma fly!

Bungee jumping barefoot – December 2012

photo

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Functioning Labels

Posted on April 25, 2013 by | 37 comments

When my daughter was two-years old she was diagnosed with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).  People assured us she was “mild” and she would certainly be mainstreamed by kindergarten.  When she was not mainstreamed, people shrugged and suggested any number of things we might do to ensure she have that meteoric rise that everyone kept saying was just around the corner.  When that meteoric rise did not occur people stopped using the word mild and the word “autism” replaced the initials PDD-NOS on her IEP.

During those early years I didn’t spend much time considering or questioning functioning labels, what they really meant, how they were being used, other than to say when people inquired, that my daughter was “mild”.  And then we went to Em’s  neurologist where I happened to say something about how Emma was “mild” and the neurologist said, in a tone of poorly concealed shock, “Well no.  I wouldn’t say she was mild.”

“You wouldn’t?” I asked in surprise.  “Well what would you say?”

He looked away from me before answering, “I would say she was… moderate, but mild?  No.”

I was stunned.  The idea that my daughter was not “mildly autistic” had not occurred to me.  Those two words that I had clung to during those early years, were suddenly ripped from my grasp.  I stood there trying to remember to breathe.  And I remember that sinking feeling in my gut.  That feeling you feel when you see something massive barreling toward you and you know there’s no chance you’ll be able to get out of the way in time.  There have been a handful of defining moments during this crazy journey that began when I first heard the word autism uttered in reference to my young child and this moment at the neurologist’s was one of them.  At the time I couldn’t speak.  What was there to say?  My knowledge of functioning labels was almost non-existent and what I thought I knew about them caused me to make a whole series of assumptions I would later find were wrong, each and every one of them, completely, categorically, wrong.

It has taken me many, many years to deconstruct what people are attempting to say when they use functioning labels.  I have found the use of these labels is uniformly inaccurate, misguided and does far more harm than good.  I understand they serve as a short-hand for insurance companies, schools and various medical institutions, but I strongly believe we as a society need to re-examine the words we are applying to a great many people and the disservice these labels are doing.  Rather than labeling someone mild, moderate or severe we should be looking at the specific needs each person has, breaking those needs down into more specific language that would better serve them.

As an example (this is in an ideal world):

A eleven-year old Autistic girl who has some verbal language, but relies heavily on scripts should be encouraged and taught to type and/or write.  An iPad should be made available to her during school hours and in the home.  Pointing skills should be a priority and supportive typing techniques should be explored.

Teaching grade level material in an engaging way, using visual, auditory, tactile and kinesthetic teaching techniques is essential.

As this young girl shows a need for intense sensory input and craves an audience, as well as displays strong leadership qualities – drama, acting and theatre classes should be included in her curriculum.  It turns out she is also very musical and is a talented singer with excellent aptitudes for both melody and rhythm – therefore music should be incorporated into her day as well.

This same young girl has shown athletic abilities.  She has core weakness and sequencing issues, therefore gymnastics, swimming and track should be essential components of her day, etc.

I could go on and on here, but the point is, if this same young girl is presented simply as “moderately” autistic how does that help her receive the specific things she needs in order to flourish?  Does the label help her at all or does it suggest a level of incompetence?   Is she relegated to a special education classroom where she is taught “life skills” at the exclusion of all else?  What does this functioning label do to our expectations of her?  Do we “dumb down” her learning materials because we assume she cannot possible understand?  Just because she enjoys watching the same video over and over for years on end, do we assume this is an accurate gauge of intellectual capability or do we entertain the notion that this is a way to calm herself with something that is familiar?  How does the label help her parents understand their child? How does the label “moderate” help educational and medical establishments help her?  How does a “moderate” label directly influence the goals that are then listed on her IEP?

Functioning labels are more than just meaningless constructs; they are doing damage. I understand the arguments for why people feel strongly they are necessary, but I disagree.  Functioning labels need to be tossed aside.  None are being served by them.

Em during her gymnastics class

IMG_4248

Related Posts:

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What Is Autism?

Posted on April 24, 2013 by | 35 comments

Google that term and one is faced with a lengthy list of deficits.  The definitions of autism are cloaked in subjective language.  All the words used are in relation to non Autistic neurology: “severe impairment”, “life long developmental disorder”,  “social impairment” and one site went so far as to say, “A mental condition in which fantasy dominates over reality, as a symptom of schizophrenia and other disorders.”  None of these “definitions” have been helpful to me, personally, nor have I found them to be factually correct.  The most common definitions of autism out there have increased my fear and encouraged me to pursue therapies and treatments that have done far more harm than good.

People often ask, “so what is autism exactly?”  Over the years I’ve had a variety of responses, but like the definitions above, they always seemed inadequate, unhelpful and inaccurate.  So now, when I answer that question all I can come up with is this:  Autism is a type of neurology.   Short and sweet.  No judgment, no comparison, just six words.  It is a neurology.  It’s the best way I know of to describe what is often mired in negativity and judgment.

Comparing Autism to non autistic neurology has gotten me into a great deal of trouble over the years.  I have found it is important that I avoid doing that.  (I’m keeping this personal.  I speak only for myself and do not presume this is how others feel.)  For years I worried about my daughter’s ability to have friends.  If I believe the common definitions of autism, her ability to make friends is “impaired”.  Yet the impairment is less about her desire and attempts to have friends as it is about non Autistic neurology being out of sync with hers.  When Em was in Florida with her friend Henry, they had no problem hanging out together, laughing and enjoying each other’s company.  Just because they typed to each other and didn’t engage in endless verbal conversation, didn’t mean they didn’t have a blast together.

If I listened to and believed the definitions of autism, I might think my child couldn’t learn to read or write.  I would be wrong.   Not only has my daughter learned to read and write, she also has learned to type.  Because I no longer believe the common definitions regarding autism I do not limit what she should or shouldn’t do.  I do not limit her future with set ideas about her future capabilities.  I have found it helpful to disregard those organizations and people who insist that Autism is a dreadful “affliction” and compare rates of autism diagnosis with cancer.

So what is a longer definition of autism?

It’s a terrific question.  Finding an answer that is factual as well as helpful to me, has been difficult to find.  However there are a few who have done a terrific job defining autism and in doing so have also helped me, personally.  Autistic Self Advocacy Network (ASAN) defines Autism ‘here‘ and this post by Brenda, over at Mama Be Good, gives a great, comprehensive answer to the question and at the end includes her personal observations of her child and what it’s been like to parent an Autistic child.

So I ask you, how do you answer the question – What is Autism?

Em on her way back to Henry’s house – April 2013

Em pets the kitty

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