Tag Archives: Autism

Another Way to Silence – Shame

Shame has a long and twisted history.   Over the centuries it has been used to coerce, to convert, to make people compliant, to keep people in line.  I’m not sure there is a “healthy” aspect to feeling shame, though I may be in the minority here as this article states, “Embarrassment and shame are important in the regulation of social behavior. Both emotions tend to occur when rules have been violated.”  But what if those “rules” are not actually in place for the good of ALL?  What if those societal “rules” serve the majority, but actually are a disservice to a minority?

The argument that without shame we would all resort to violent, unethical and amoral behavior is one I don’t agree with.  Plenty of people behave badly who are filled with shame, often as a direct result of the burden of shame they live with, but usually those who feel tremendous shame hurt themselves more often.  I question how often shame, actually motivates us to respond in positive and constructive ways.  In most cases, it seems to me, shame is less a controller of bad behavior and more an instigator of self-betrayal and self harm.

Shame is what people feel who have been on the receiving end of violence, violations, betrayal and abuse.  Numerous studies have linked shame with depression, suicidal ideation, post-traumatic stress, rape and incest.  The very people who could actually use a little shame appear to be without, while those they victimize carry the vast portion of it.  In these cases, shame is the emotional equivalent to metal restraints, intended to keep people in check, compliant and silent, particularly when used on children or a group of people who are already in the minority.

Many of the methods used, with supposedly great success, on Autistic children, has created a population of adults who feel tremendous shame, lack self-esteem, feel inferior, have anxiety, live with ongoing debilitating stress, all of which exacerbates the very “behaviors” these therapies attempted to remove.   The unending destructive cycle shame creates, does nothing positive for anyone, least of all our children.

I believe shame keeps us from flourishing.  It causes us to doubt, to become hyper aware, self-critical of our desires, our urges, our instincts.  Shame makes us feel incapable, unable, frozen and of little value.  From my perspective, shame is far more damaging than it is “healthy”.  Shame is exactly what I do not want my children feeling.  Ever.  In fact, shame is a warning sign that something has been taught improperly.  If either of my children exhibit shame about something, it is a signal that more needs to be discussed.

I do not want my children behaving in a certain way because they feel shame if they don’t.  I want my children behaving in a kind and loving manner towards themselves and others because they have learned it feels good to do so, because they have come to see that self-seeking, hurting others, gossip, betrayal and acts motivated by resentment and vindictiveness lead to more harm and like-minded behavior. All behavior is infectious.  All behaviors, good or bad can provoke others to do the same.  I am not naïve enough to believe it’s a given, but I do know that I like myself far more when I am kind and being of service than when I’m not.

I hope my children are learning the antithesis of shame and silent compliance, which is a strong sense of self-worth.  I want them to know now, while they are still so young, the beauty and joy of a healthy sense of self, that wonderful feeling of liking who they are as human beings, that feeling we are born with, but that over time can be taken from us.  I want my children to be in touch with those wonderful feelings of curiosity, awe and joy, so that when they make mistakes they aren’t destroyed by them, overwhelmed with shame and become silent.  I want to bolster them up, reassure them, encourage them, support them, so one day, they will be able to give hope and encouragement to someone else who may desperately need it.

Emma – three years old – 2005 

2005

A(nother) Performer in the Family

I asked Em if it was okay to post the following photographs of her.  She said, “Yeah!  Post on blog!”

“But is it okay to first post on Facebook?” I asked.  And again without hesitation Em gave me an enthusiastic thumbs up.

I have to admit, whenever Em says yes to me, regarding posting an image of her or something she’s said or typed, I feel more than a little ambivalent.   I wonder if she fully understands what it means to post on Facebook or here on the blog, despite my lengthy (and more than one) explanations of what this means, how many people may see it, who those people are or might be.  People remind me of the importance of listening.  And part of listening is to also honor and respect what I hear.   I’m trying to do that, while also trusting my own instincts and hopefully I’m getting it “right” more often than not.

I compare Emma’s response to her older brother’s, who has made it known to us that under no circumstances is he okay having us post his photograph, except on very rare occasions when he’ll shrug and say, “Seriously, Mom?”  There’s usually a moment when he stares at me with a slight grin and then says, “Yeah, okay.”  But my daughter is not like her older brother.  My daughter has a completely different personality.  Emma, adores the spot light.  If there is a stage, she will head for it.  If there’s a microphone, she will grab it, if there’s a crowd she wants to be in front of it, preferably singing.  Emma does not have inhibitions, she does not worry about what others will think or may think.  Emma has that wonderful ability to be herself among strangers and doesn’t modify herself in accordance with what she thinks they may or may not like.  Emma is MY role model!

What follows are the photos I asked Emma if it was okay to post, to which she said cheerfully, “Yes!”

First there was this…

1Em

And then this...
2Em

And finally, this…
3Em

Okay, I don’t know about the rest of you, but for some reason Emma hugging the Vlasic Pickle Mascot makes me tear up… Every. Single. Time.

*A quick side note – the Vlasic Pickle mascot is a stork. Why, you might ask? Well, I googled it and found out that in the ’60’s their tag line was, “the pickle pregnant women crave…”

I have to run, because Emma’s mom is in a flash mob today outside the stock exchange…  yeah, you read that right.  YouTube video to follow…  😀

A Word Of Thanks

A friend of mine hasn’t been feeling well.  She had a cold or maybe it was the flu.  When she wrote me I could tell by the uncharacteristic abundance of typos that she wasn’t feeling great.  I thought about her, hoping she’d feel better soon.  And then yesterday there she was, so much better, her old self, witty, funny, silly, and I felt tremendous relief.  I hadn’t realized how concerned I was until she was better.

When I was nine my father went horse back riding.  It was a Wednesday.  He and my mother always went riding Wednesday afternoons.  I was home, sick with the flu that afternoon.  I remember staring out the window of my bedroom, the sunlight far too harsh forced me to turn my head from its glaring light.  My father told me he’d look in on me when he returned.  He never did.  At least not for a long time.  That afternoon he fell off his horse and, as luck would have it, he did not die as, those who administered to his broken body, predicted.  He did not die, but he was never the same.

Sometimes our lives change so suddenly it is impossible for our minds to keep up.  Sometimes it takes years to fully appreciate how one second can change so much.

When Emma was born, I could not have anticipated how completely my life would change as a result of her being.  It took years for me to process, to catch up, to fully appreciate the magnitude of one child’s existence and all that would occur as a direct result.  I could not have imagined how completely her life would change mine.   And now, today, in this moment I can say with complete and utter conviction, her life has made mine infinitely better, infinitely more enriched, infinitely more meaningful.  Her life.  Her existence.  Selfishly, and I do mean that literally, selfishly, I have benefited so completely from her being in this world, it takes my breath away.

In any given moment our lives can change.  Just like that.  And in that moment we have no way of knowing where we will be led.  Awhile ago I made a choice.  I didn’t think of it as a choice at the time, but I see now, that in fact it was.  I chose to view the things that have happened in my life as moments of possibility.  As long as I am allowed to live, each moment is a possibility to learn, to grow, to be open to new ideas.  I can say that easily now.  I understand this.  As lives go, mine has been a privileged one.  My perceived “hardship” is nothing compared to what so many have endured.  I do not say any of this flippantly.  This choice I made has been relatively easy to follow.

When my friend was sick I worried, when my father almost died I was devastated, when my child was diagnosed I despaired, but these things happened regardless of my response.  My response to them didn’t change their occurrence.

In this moment it’s raining outside.  Drops of water plop erratically on the air conditioning unit outside my studio, the clouds drift lazily along, skimming the tops of the multilevel buildings I see outside my window.  The red brake lights from the cars careening along the interlaced roadways create a moving collage as they speed off and on the exit ramps of the 59th Street bridge.  In this moment I am safe, my husband is safe, my family is safe, my friend is feeling better…  In this moment, in this brief moment, all is well and I am filled with gratitude for all I have.  I am filled with appreciation for the enormity of how one life has so profoundly changed my own in ways I could not have dared imagine.  I am humbled, knowing I will never be able to fully repay the gifts she has given me.

Beautiful Emma

Em

 

Non-Speaking People Who Type

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

Autism And Stress

Lest you think this post is about stress felt by parents, let me quickly say, it’s not.  This post is about the stress I have observed my daughter experiences.  The stress she feels and that I (often unwittingly and unknowingly) exacerbate.  This is not about  beating myself up, but is an honest look at how my reactions can make matters worse.  As I’ve said before, it is my hope that as Emma’s mother I continue to make progress in my parenting, but also as a human being.  Just as I hope and expect my daughter to learn and progress, I hope the same for myself.

“We have to minimize her stress.”  This was something Soma Mukhopadhyay said during Emma’s most recent session with her.  It was in answer to my question about when to graduate from using a letter board to a computer keyboard during her RPM (rapid prompting method) sessions.  During the session Emma pointed to a letter, then Soma wrote the letter down, Emma pointed to another letter, and on it went until Emma had written an entire sentence.  This technique, of one letter pointed to, one letter written down, helps with Emma’s impulsivity, which is amplified when she’s feeling stress.  It was during this same session that Emma answered Soma’s question about whether she could feel colors, with, “Of course.  That answer, those two words spelled out so easily by my daughter, made me laugh and cry at the same time.

My daughter types and does things that astound me.  It doesn’t matter how much I believe in her competence, I am continually astonished, ecstatic and heartbroken all at the same time.  Astonished because of the ease and confidence with which she will say something like, “Of course” in answer to a highly complex question, heartbroken because for so long these were words I never imagined I’d hear, let alone learn what I am now learning about her.  I no longer believe these feelings are mutually exclusive to each other.  Now, instead of wondering whether it was all a dream, I celebrate the exquisite beauty of my child and all she does that constantly reminds me of just how vast and incredible the human mind is.  I am humbled, on a daily basis, in the best possible way.  I would not trade the awe I get to feel when in the presence of my child for anything.  Seeing my daughter defy every limited idea about her that has ever been uttered, including my own thinking, gives me tremendous hope for this world, for my own growth and for humanity.

I witness greatness when I watch her work and it is a beautiful thing.  So when she expresses upset, which I now am able to identify as stress, it breaks my heart in a way that it didn’t, before I understood.  What I used to think of as stubbornness or a temper tantrum or a form of manipulation, I now see as a product of the enormous stress she feels.  And I have to wonder, exactly how much stress must she cope with?  I have talked about what I perceived to be her “resistance” in typing, but am now beginning to think of it as less “resistance” and more stress.  Stress from how very difficult it is.  Stress from expectations, stress from making a mistake, stress from doing something different, and those are just the stresses I can easily come up with and relate to.  I’m guessing there are many more I am completely unaware of.

Stress is something that, when she is gripped by it, all systems seem to simultaneously crash.  To make matters worse, my stress level rises in direct proportion to hers and I am confronted with how unhelpful I am when I allow my stress to overwhelm me as was the case the other day.  My response to Emma’s panic was to panic too.  So much so that I could barely breathe.  “You have to calm down!” I instructed her, while my own sense of calm, shattered so completely, was a perfect example of what NOT to do.  It was the antithesis of modeling behavior sought and it reminded me of something my father used to say to my siblings and me – “Do as I say and not as I do!”  I think he thought it amusing, however I remember it as anything but.

There are times I cannot predict, when something happens, things I don’t know or understand, and suddenly my seemingly placid, happy child is in a turmoil of upset.  There is often a sensory component I’m unaware of.  During these times sentences are repeated that are obviously meaningful to her, but that I find confusing.  As her stress escalates, her ability to verbalize what’s going on plummets and my frenzied request that she “type it out” does nothing to alleviate the situation.  The longer all of this goes on, the more I feel completely ill-equipped to keep my stress level from going into the red, let alone help her with hers.  That Emma seems convinced I am, not only capable of pulling it together, but will be able to help her, is an example of my daughter presuming in my competence, which makes me all the more determined to work through my own issues and do better.  I owe it to her.

September, 2009

September '09

Respect

I don’t know about you, but there are definitely days when I lose sight of long-term goals.  I become impatient.  I forget to respect the process… whether it’s my own, my husband’s, a friend’s or either of my children’s.  I just don’t.  I want things to happen on MY time frame.  I like when things happen in exactly the way I imagined they would, with the speed in which I hoped for.  I LOVE when things happen even faster or in a way I couldn’t have imagined and end up even better than I thought.  But when things meander along, taking their time, going at a pace far too slow for my liking I have trouble…  My father used to say to me, “You want what you want, when you want it.”  This was NOT meant as a compliment.   He was right.  I am impatient.  I prefer when things I want to happen, happened yesterday.

I used to think I would become more patient with age, but if anything, growing older makes me even less patient as I’m more aware of my mortality and that there really is an “end” to all of this, or I should say an end to me(gasp!) and therefore I have to hurry if I’m going to get everything I want done, finished.  You know, things like changing the way people perceive autism, changing the way society treats people with disabilities, changing how our education system works… little stuff like that…  *Big grin.

So when I’m hit with a wave of impatience, when I am most definitely NOT respecting the process, whatever and whomever that may apply to, I must remind myself of my tendency toward impatience and that I do not control much of what happens in this world.  Everyone can let out their breath now; I know that was something most of you were concerned about.  *Said with a big smile and a generous dollop of sarcasm.

Respect… this is something I think about a great deal.  My daughter’s life is no less worthy of respect than my own.  Respecting her means, listening to her, finding out how best to communicate with her, I have to respect the way she learns, the best ways for her to express herself in any given situation, the way she takes in information, the time she needs to move from one thing to the next, the clear instructions she needs so she can do what is being asked and honoring her as a human being who deserves to be treated with dignity.

Respect.

Musings of an Aspie wrote a post the other day entitled, (Not) a Little Slow.  It’s a terrific post, one I wish was part of a “Welcome To The Tribe – Things You Should Know Handout”.  I wish this handout existed for all of us when we receive an autism diagnosis, whether for ourselves or our children.  Actually this imaginary handout should be made available to every human being on this planet.  If we treated all humans with the kind of generosity, respect and civility practiced at Autism conferences where Autistic people are not only in attendance, but are largely responsible for the creation of the programming and planning, this world would be a better place.

Respect.

Em & Laura on the subway

Em & Laura

Letting Go and Trust

Yesterday Emma did another “catch” at her trapeze school.  Yesterday’s catch was more complicated than the one she perfected a month ago and I cannot wait to see it.  I asked Em last night whether I could post it here and she said, “Yes!  Post on blog!” Since Em’s therapist, Joe, hasn’t had time to upload and send me the link from yesterday , I’m sorry, I can’t help myself, I am posting her first catch from a month ago AGAIN.  Watch all the way through to hear what Em says at the end, it makes me teary just thinking about it.

2Watching her flying through the air makes me happy.  Seeing her joy and sense of accomplishment, makes me happy.  The first time I watched her swooshing through the air I felt a mixture of joy and trepidation, the second time a soaring hopefulness of all that is possible, the third time pride, knowing how hard she has worked, trained and practiced to get to this point.  Years.  Years of practicing.  Just now, as I watched it again, I was reminded of how, it is the connections with other people who make our lives full and joyous.  Connections rooted in trust, compassion, love, and a sense of belonging.

3When Emma releases the bar and reaches out to grab the forearms of the other person, I cannot help but hold my breath.  Even though I know the ending to this particular story, I still hold my breath.  Will they catch her?  Will she fall?  Will she get hurt?  Can she trust them, rely on them to be there for her?   As I write this I know these are universal questions.  Questions I have asked with both my children in mind, questions I have asked about everyone I’ve ever loved.  But in this one instance Emma trusts the other person will be there to catch her and the tears fill my eyes because they are, yet I know this won’t always be the case.   As much as I want to convince myself that I have that power to always be there, to have every situation in my control, there will be times when I won’t be able to protect her from the disappointment and heartache that will come from trusting someone who cannot be relied upon.

But before I drift off into a melancholy laced reverie, I have to remind myself that this is my interpretation of how my daughter may or may not feel when faced with disappointment and the deep sadness that comes with trusting someone, only to feel let down by them or worse, betrayed.  My daughter has a very different outlook on life than me.  She has proven to me repeatedly that my life experiences are not accurate lenses with which to view or predict her life.  The beauty of being a mom is realizing my ideas about how my children will or won’t cope with the things thrown at them are not necessarily correct.  I believe this is what older parents of children who are now adults refer to as “letting go”!

In the twelve-step rooms there’s a great deal of talk about the g-o-d word.  It’s not a word that brings me any degree of solace, so I’ve learned to do what my friend Ibby calls a “work around”.  I don’t do the g-word, but I have faith.  Faith that if I am kind, generous and try my best to be of service, I will be better off than if I’m not.  This thinking doesn’t ensure those I love will always be safe, but it helps me stay centered and present one day at a time.  I can hear Richard’s voice in my head saying, “What?  That’s it?”  And my answer is to laugh and say, “Yup.  That’s pretty much the extent of my wisdom.”

4

Encouraging a Sense of Self Worth

When I was in eighth grade I had a “Wellness” class given by a classmate’s mother who had been a child actor and model.  The boys were separated out and taken to (presumably) a similar class given by a male equivalent. (I have to wonder now, where exactly did they go?  Who was the male equivalent?  At the time, I never thought to ask.)  All the eighth grade girls sat in a circle on the ground in front of this woman who stood before us in all her coiffed, fine featured, perfumed glory, wearing an oh-so-chic, red pants suit (this was the early ’70’s) and looking like she had just walked off a shoot for the cover of a fashion magazine.  (Which, in fact, she had.)

I felt completely inadequate in comparison and all the more so as I sat listening to her glowing accounts of what she did for exercise, the wholesome meals she ate and her disciplined daily use of various emollients.  I remember falling into despair as I listened to her, not only because I didn’t know what emollients were, or couldn’t imagine a life that did not include glazed jelly doughnuts, but because everything about her was foreign to me, forget that hers was not a life I had ever thought about having, let alone wanting.  But as I sat there I was aware that I should want to be just like her.  She represented all that was beautiful and unobtainable and I, in direct contrast, represented all that was wanting.  I’ve never forgotten her.

When I gave birth to each of my children, the one thing I wanted more than anything else was to make sure they never felt ashamed of themselves.  I wanted to make sure they felt supported, loved and valued for who they were, exactly as they were.  I wanted to be sure I cheered them on, to model for them kindness, generosity, compassion and good work ethics.  I swore to myself I would do my best to respect them and to listen to them.  And then we were given Emma’s diagnosis and suddenly those goals took a back seat to the goal of her being “mainstreamed” and “indistinguishable from her peers.”  Those two goals rammed up against my desire for her to feel self-love, self-acceptance, self-worth.  For a couple of years I lost my way.  In my desperation I allowed others to dictate what I should do and what I should want for my daughter.  I forgot that my early goals for her were more important than anything else.

I began to look for an Autistic adult who I could imagine my daughter might be like.  I wanted to find someone who might represent a possibility of what I might expect.  I read what books I could find, written by Autistic adults, but concluded these adults were much “higher” functioning than my child.   It wasn’t until later that someone pointed out these adults who had written and had published books, were at least twenty years older than my daughter and therefore had more than twenty years of learning, experience and growth that my daughter had not had the advantage of.  Undeterred, I kept looking anyway.  Even when I found someone who seemed to have similar language challenges, their upbringing differed greatly, their interests led them in other directions, I could never quite imagine my daughter growing up to be just like them.

Searching for Autistic adults who might be a version of my daughter was grounded in a desire to calm my fears.  It was a misguided attempt to comfort myself.  By saying – well this person is speaking so clearly, able to have their needs known and heard, therefore perhaps my daughter will be able to one day do the same, I was hoping to quell my worries.  A shared neurology with random people does not mean anything more than it does to compare my shared non Autistic neurology with the same. Without meaning to I was replicating that “wellness” class over and over only now it was my daughter I imagined sitting cross-legged on the ground looking up at someone she would never grow up to be like.  This or that person is not an adult replica of my daughter any more than that woman teaching the Wellness class was an adult version of me.

I want and hope my daughter will feel empowered to be who she is without amendment.  The best way I can ensure she feel empowered is by listening to her, honoring her, celebrating and embracing her, exactly as she is in this moment.  I must give her the support she needs to communicate,  show her the different methods she can use to communicate so she knows she has choices and believe in her.  And there’s another piece to this, which is this – my issue of self-worth, with not being that fine featured, delicate nosed, thin hipped, flat chested version of ideal woman I grew up believing meant happiness, is mine to work through and not my daughter’s.  This may seem obvious to many of you, but it is something I must remind myself of.  I have to ask myself often, is this my issue or hers?  Comparing Emma to adults, to any adult is most definitely my issue and it is one I am trying hard not to pass along to her.

2012

Why Wretches And Jabberers Is Essential Viewing

Wretches and Jabberers.  I have written before about this documentary, but I’ve never fully explained why this movie had such a profound impact on me, on my thinking and subsequently on my family.  I will attempt to do that now.

I watched Wretches and Jabberers at the urging of my friend, Ibby last summer.  If a person’s life can be seen as a series of lights, indicating special influencers, Wretches and Jabberers was a beacon.   I knew nothing about supported typing, in fact, I’d never heard of it, so I watched in fascination as both Larry Bissonnette and Tracy Thresher (who are mostly non-speakers and Autistic) typed with their support persons, Pascal Cheng and Harvey Lavoy.  And I wondered whether my daughter might find communicating easier if she typed, instead of being expected to speak.

Larry is a painter, lives with his sister and was institutionalized as a teenager.  He shouts out things like “Bad boy!”  Tracy hits himself in the head when frustrated and has nowhere he can call “home”.  The documentary follows Larry and Tracy as they travel the world meeting other non speaking Autistics.  Again and again the viewer is shown a mostly non speaking Autistic person who has been deemed intellectually incapable by society, only to witness their intelligence and humor break through the silence by typing on a voice activated keyboard or iPad.  And again I thought about my daughter.

It is impossible to watch the film and believe these two men are isolated cases.  One cannot view this documentary and not question one’s preconceived beliefs about intelligence. The film defies the accepted and common non Autistic assumptions about Autism and what it means to be Autistic.  And for me, anyway, it made me question everything I thought I “knew” about my daughter.  All the things I had begun to question, whispering doubts about my thinking that I was no longer able to ignore because of the blogs I was reading written by Autistic people, were now amplified.

I have been interviewing Tracy Thresher for a piece I’m working on that I intend to submit to Huffingtion Post.  In answer to my question about what it meant to him making the film he wrote, “Our film catapulted me to realize my dream of traveling the world to educate, learn and change old attitudes of discrimination toward people of varying abilities. The Larry and Tracy duo illustrates how intelligence is often worked out in a much different way.”

Later in my interview he wrote, “…my mission to show kids and their supports that putting communication to the top of their list of priorities is vitally cleansing to the mind. Releasing deep thoughts is the key to alleviating anxiety. Frustration leads the body to unproductive anger. Being able to show intelligent thought is the path to happier futures and true quality of life, leading to purpose. That is what I sought and found with typing.”

Once again I thought about my daughter and her difficulty with oral language and the frustration that causes her.

Wretches and Jabberers was like an enormous, day glo green, neon sign saying “follow me” on it.  Powerful, funny, poignant, Wretches and Jabberers is essential viewing for all human beings, not just those interested in Autism and parents of Autistic children.  It rattles our unexamined biases, our beliefs, our perceptions and everything we are being “told” about autism, our children and what is and isn’t possible.  And if you are like me, you will think about your child and the world differently as a result of watching it.

One of my all time favorite photographs of Larry Bissonnette taking Emma’s photograph in Tampa, Florida ~ April 2013  (Amy Sequenzia is in the background)

Larry takes Em's photograph

Taking Action ~ Presuming Competence

A full transcript of Richard’s Blog Talk Radio Show is now available for any who want it by clicking ‘Blog Talk Radio Transcript‘.  I am trying to add it to Facebook, but have run into problems as the file is too large to add to “notes” and I can’t add it even when changing it to either a txt file or an .htm file.  So unless someone knows how to attach a large file, (12,540 word count) I am not sure how to get this on Facebook.  I may need to break it into several smaller segments, which would be too bad.  Please advise!

Lots of people have been asking questions about “presuming competence” and how that applies to either their child or someone they are working with.  So I am adding links to a couple terrific articles that I’ve found helpful.

Kathie Snow, entitled: PRESUME COMPETENCE:  Challenging Conventional Wisdom About People with Disabilities.

An interview with Douglas Biklen, winner of the UNESCO/Emir Jaber al-Ahmad al-Jaber al-Sabah Prize to promote Quality Education for Persons with Intellectual Disabilities and Dean of the School of Education at Syracuse University.

Presume Competence – a PDF from the Peal Center

Presuming Competence ~ By Douglas Biklen and Jamie Burke (Jamie, who we met this past March, just graduated from college and types independently! Yay Jamie and congratulations!!)

I am just beginning on this road of “presuming competence”.  There are others who are far ahead of me, many of whom have been kind enough to email me privately with their experience, strength, wisdom and encouragement.  There are many of you who are directly affected by society’s inability to “presume competence” and all that means to you and your life.  Many of you I know, others I am just getting to know, some I don’t know, but hope to know, but all of you are living with the consequences of a society that does not believe in a basic right we should all have granted to us – a presumption of competence.

What follows is a list of things I try not to forget that have helped me presume competence, please add your own thoughts, as I am well aware many of you are further along than I am.  I am still learning!

*I hesitated publishing this post because I do not want anyone to take this as a lecture or that I think I have all the answers.  I don’t and it isn’t.  I made the decision to publish this because many people have contacted me privately asking for help in presuming competence.  These are the things I do and continue to do, tools really, that I’ve personally found helpful.

In order to presume competence I have to:

1)  Presuming Competence is a “practice”.  Much like anything I want to get really good at, I must practice this.  It is very much an action.

2)  Examine my preconceived notions about autism and what that means to my child.  For me I made a list.  Everything that comes to mind, no matter how awful I may feel about myself for thinking such things, I must “out” myself so that I can come face to face with ingrained beliefs, prejudices, things I assumed, but couldn’t know, fears… a full inventory of all that I once believed and may still believe about autism and Autistic people.  It is helpful to share this list privately with another trustworthy human being who will not judge or condemn.  By the way, this is not something I will ever share publicly.  None need see it as it would be hurtful to many and judged by others.  But for my progress it is important that I be able to admit these things so that I may change.

Once I have my list and I’ve confided in someone I trust, I must be willing to examine and dismantle any remaining destructive beliefs.

To do this I must ask myself:
How is this belief continuing to serve me?
What am I afraid of?
What do I think will happen if I let go of this thought?

I have to be willing to face my fears.  I have to be willing to honestly and without judgment acknowledge my own thinking.

3) Question everything.  Literally, question everything.  Do not take my word for any of this, try it yourself.

4)  Be curious, ask questions, seek advise from those who are ahead of you.  This has been key as there are many people who have been doing this much longer than I have.  Talk to them.  Many people are living with the results of being presumed incompetent.  Read what they are writing.  Listen to them, learn from them.

5)  When in doubt ask.  When in doubt don’t act.  Doing nothing is often far better than doing something or saying something that I’ll later regret.  If I am not sure how to proceed, it may be the least dangerous option to not continue until I can figure out how best to approach the situation.

6) We all make mistakes.  It’s okay.  It’s part of the human condition, no matter what our neurology.  I make mistakes all the time, so do my children.  It’s okay.  Keep moving forward.

7) If my daughter isn’t communicating in a way that I’m able to understand, I need to try a different method of communication.  All human beings seek connection.

8) I cannot and do not speak for either of my children, nor do I own them.  They are not extensions of me.  They are their own people, with their own unique personalities.  It is my job as their parent to encourage them and find the best ways to support them so they can flourish.  Any embarrassment, shame, fear or assumptions about who they should or shouldn’t be are mine.  They have little to do with my children as much as I may believe otherwise.  These are things I am responsible for working through privately.

9) Realize I don’t know.  There is just a great deal I don’t understand.  The only way I can hope to understand is by admitting that I don’t.  I don’t have all the answers.  I am learning.  My daughter is my best teacher.

10) Listen.  I have to be willing to listen to her.  I don’t mean just verbal language, I mean “listen” in a more holistic way.  Listen to every aspect of her.  What is she trying to tell me?  Often I will not immediately be able to understand.  Sometimes it may take years before I will, but it is more important that I continue to try even when I don’t understand than deciding she isn’t trying to tell me anything.

11) Patience.  This is one of the single most difficult things for me to practice.  I am, by my very nature, incredibly impatient.  Impatience serves me in some ways, but in approaching my children, impatience almost always hurts them and me more than it helps.  I have to “check my impatience at the door” as a friend of mine once said.  If I am unable to do that, it’s probably best if I take a break and come back when I’m able to.

This list is not complete… there are many more things to add… but they will have to wait for another day…

Soma Mukhopadhyay's First RPM session with Emma ~ 2013

Soma Mukhopadhyay’s First RPM session with Emma ~ 2013

A “Miracle” or the Norm?

Years ago I saw Autism is a World, about Sue Rubin who is non-speaking and Autistic.  I was amazed by her and thought how incredible she was.  I had similar thoughts when I read about Tito Mukhopadhyay, saw the news program about Carly Fleischmann, watched and listened to Amanda Baggs‘ You Tube video… there were others, all non-speaking for the most part, all Autistic and each time I was struck by how “miraculous” they were.  They gave me hope, but each one, individually, seemed incredible, too good to be true.  The word “miracle” implies a rare occurrence.  I didn’t dare believe any of these Autistic people were indicative of a larger truth.  When it came to my daughter, I could not make the connection.

I have to interrupt this post for a second because last week I went through the blog and deleted all the posts I thought might hurt my daughter’s feelings if she were to ever read them or ask me to read them to her.  (That I realized I needed to do this, is yet another example of how far I’ve come!)  I am not trying to erase the truth or the past, I just do not want those posts in the public domain for all to view, at my daughter’s expense.  I do not want people coming to this blog to read an old post and leave thinking I am supporting or encouraging people to try any of the various treatments we once did.  There is plenty of negative, stereotyped thinking going on when it comes to autism and Autistic people, I don’t want this blog to be one more place people come to read that.

As I was going through old posts I was confronted with the level of panic and desperation I felt not so long ago.  I was confronted with how completely I had bought into the way autism is represented in the world, encouraged by the media’s representation and the public’s ignorance of it.  None of which is in accordance with these stories of Autistic individuals, unless they are “miracles”.  So when I heard about people like Carly and Tito and Sue, I could not make the leap required to apply what they were accomplishing, to my daughter who was then in a private, special education, school being taught the same fairy tale going on two years.  A place where, as well-meaning as they certainly were, they were not taught or trained to presume competence of their students.  The curriculum, if you could call it that, was not remotely age appropriate, yet she was loved and safe, though not challenged intellectually; it seemed it was the best option available to us.

I was fortunate.  I had some terrific people who recommended books and documentaries that I’ve included on the Resources page of this blog.  I was asked to speak at the Autcom Conference and met a great many more Autistic people who do not speak or speak intermittently or un-reliably, but who are communicating a great deal.  So many, that it finally began to occur to me that maybe, just maybe, my daughter might be one of them.  Perhaps they were not the exceptions, perhaps she too could learn to communicate as so many of the Autistic people I was meeting were.  And once I made that connection, once I stopped viewing each person as a miracle, but began to wonder whether given appropriate accommodations this was more the norm, than not, that was when I was able to understand what practicing presuming competence really meant.  And the more I was able to do this, the more my daughter rose to the occasion.  The more she proved she could and did understand, the more I presumed her competence and on it goes…

Em types us a message that astonishes us ~ April, 2013

EmTypes ICI

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

 

“Proof” of Competence

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

Parenting & Presuming Competence

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

The Wisdom of Peyton Goddard

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