But What About Alex?

Posted on June 12, 2013 by | 135 comments

Another Autistic child has died… stabbed… multiple times, in the chest, by his mother. Alex Spourdalakis was 14 years old.

“The mother of a 14-year-old with severe autism who was found stabbed to death…” ~ Daily Herald.com

But what about Alex?

”The mother of a 14-year-old with severe autism…” ~ Pantagraph.com

But what about Alex?

“First degree murder charges have been filed against Dorothy Spourdalakis, the mother of a teen with severe autism…” ~ abclocal.go.com

But what about Alex?

A young man. Stabbed. Not once. Multiple times.

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of happiness.” The United States Declaration of Independence – 1776

But what about Alex?

In the 237 years since those words were first written we have failed miserably at putting this idea into practice. All human life is not treated as equal; apparently it is not “self-evident”. We continue to live in a world where equality is still desperately sought by a great many.

For those who are born unable to speak and Autistic, those among us, who are given the label “severe”, their lives matter even less. We not only think of ourselves, (those of us who are able to speak and whose neurology is not Autistic) as superior, our lives deemed more worthwhile, but we are reminded of our superiority every single day of our existence, just as those who are born unlike us are told in myriad ways how they are not.

Autistic people, particularly those with multiple physical challenges, are spoken of as “burdens” to society, they are talked about as though none who are Autistic are capable of understanding the words being used to describe them. They are not consulted. They are not listened to. For the most part they are being ignored. And those who are raising their voices in protest, who dare to speak out against the crimes committed against them, they are met with resistance, anger, indignation. They are often ridiculed, dismissed, silenced or simply ignored.

When a parent murders their child, we cringe in horror. When that child is disabled we sympathize. The media brings in psychologists to help us understand. We dissect the child’s history, we look for clues, what could have provoked a parent to do such a thing? Sometimes we conclude the parent was crazy and unfit, but not before we make sure there was nothing unusual about the child. As we rally around, trying to distance or identify with the parent, Alex and those like him are all but forgotten. His life is seen as an example of what some must endure. His life becomes an illustration of that burden on society that everyone wishes would just go away.

But what about Alex?

What about what Alex had to endure? What about what it must have been like to live his life for those 14 years? Where are the news articles discussing who this young man was? What did he love? What were his passions? What made him happy? What must it be like to not be able to speak? Did he communicate through typing?  Did he read and write and if so what did he like to read?   What was his favorite subject?  Did he love music?   Did he like animals?  Was there something special he enjoyed doing?

What about Alex?

Alex

 

135 Comments

Posted in Autism, functioning labels, Parenting

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Another Way to Silence – Shame

Posted on June 11, 2013 by | 26 comments

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

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Posted in Autism, Parenting, Self Injurious Behavior

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A(nother) Performer in the Family

Posted on June 10, 2013 by | 18 comments

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…  😀

18 Comments

Posted in Autism, mother/daughter, Parenting

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A Word Of Thanks

Posted on June 7, 2013 by | 29 comments

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

 

29 Comments

Posted in Autism, Gratitude, Parenting

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Non-Speaking People Who Type

Posted on June 6, 2013 by | 73 comments

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

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

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

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

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

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

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

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

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

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

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

Barb types

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Posted in Autism, facilitated communication, supported typing

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We Are in This Together

Posted on June 5, 2013 by | 32 comments

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

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

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

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

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

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

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

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

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

Em, Barb & Lois

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Posted in Autism, Barb Rentenbach, Parenting

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Autism And Stress

Posted on June 4, 2013 by | 37 comments

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

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Posted in Autism, Parenting, Soma Mukhopadhyay

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Respect

Posted on May 31, 2013 by | 24 comments

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

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Posted in Autism, Parenting, Respect

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Acknowledging Other’s Achievements

Posted on May 30, 2013 by | 21 comments

When I asked Emma if I could post this video of her doing her latest “catch”, she said, “Yes!  Post on blog!”

I’ve written about Emma perfecting her “catch” ‘here‘ and ‘here‘ and I’ve mentioned too, the hours of practice it took, for her to get to this point.  It’s important you understand how hard she’s worked.   She didn’t suddenly climb up a ladder, grab onto the trapeze, swing a few times and then catch someone else’s arms one day.  She has been practicing this for years.  Just as she didn’t suddenly begin typing sentences or one day open up a book and start reading it, Emma has worked hard, incredibly hard and for anyone to suggest otherwise is doing her and others who are accomplishing wonderful things a tremendous disservice.

Far too often we hear stories of children and people who, seemingly miraculously, began reading grade level material or began typing their thoughts or began playing an instrument and to us, the reader, the person who has just now discovered this story, this video, this whatever it is, it seems it all happened “suddenly”, “miraculously”,  “overnight”, yet this is rarely the case.   Years and years of practice, of hard, hard work have taken place before that moment when we become aware of the person.  How many times have we heard about someone being an “overnight sensation” with lots of exclamation marks following those two words.  How often do we hear of someone who has accomplished incredible things, we marvel at them, but we also dismiss their tremendous accomplishments with our belief that it all happened “miraculously”.

The years leading up to those success stories are not so interesting to most of us.  We don’t really want to know about the daily grind, day after day of showing up to perfect or master a skill.  When we apply these same beliefs to people with disabilities we are doing them a tremendous disservice.  Not only are we ignoring the difficult work, the hours and hours they put, in practicing and honing their skills, we are dismissing all that hard work with words like “magical” and “miraculous” and we are ignoring just how hard that work is.   There is nothing miraculous about someone accomplishing something after putting in hundreds and thousands of hours of practice and hard work for years.  Their accomplishment is not an indication of our failure.  We do not need to dismiss someone else’s achievements to make ourselves feel better.

All those people who have gone on to prove themselves as more capable than most people gave them credit for are NOT examples of miracles.  They got to where they are through HARD WORK.  To all of you,  Emma Z-L, Carly Fleischmann, Tito Mukhopadhyay, Jennifer Seybert, Jamie Burke, DJ Savarese, Barb Rentenbach, Amy Sequenzia,  Emma Studer, Paige Goddard, Amanda Baggs, Henry Frost, Larry Bissonnette, Tracy Thresher, Sue Rubin, Alberto Frugone, Richard Attfield, Nick Pentzell, Rob Cutler (there are too many people to list) to all of you who have worked so hard, who continue to work every single day to communicate and do all that you do, your hard work is acknowledged and appreciated.  I need you to know how much I appreciate the days, months, years, and for some of you, decades that each of you has spent showing up, day after day to do what does not come easily.

You are leading the way for my daughter.  You are showing me how it’s done; I cannot thank you enough.

Emma practices climbing the rope wall

Nic & Em

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Posted in Autism, Autistic Role Models, Parenting

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Letting Go and Trust

Posted on May 29, 2013 by | 19 comments

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

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Posted in Autism, Parenting, trust

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Encouraging a Sense of Self Worth

Posted on May 28, 2013 by | 16 comments

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

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Posted in Autism, mother/daughter, Parenting

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Giving Hope…

Posted on May 24, 2013 by | 16 comments

During those first few years of Emma’s life, when we were so exhausted and everything was confusing, well-meaning people made pronouncements about Emma’s future.  If I had to choose one emotion to describe my feelings during those early years, it would be terror…  I was terrified.  The kind of terror that keeps you up at night and then, once you’ve managed to lose yourself in the welcome relief of sleep, you dream about elevators swinging in midair, doors that open up to emptiness, running to places only to find you keep ending up where you began…  and then… and then you wake up with a jolt of optimism, for a brief, few seconds you have forgotten your terror, only to have it come surging back, dispersing any wisps of residual optimism from days now gone…  You’re left bereft, empty, alone and yes, grieving… Grieving for that time when terror wasn’t something you were intimate with…

What I wanted during those early years, what I wanted later when Emma grew beyond toddlerhood, when she entered adolescence, all I wanted was for someone, anyone to say –  Don’t believe any of these people.  They have no idea what they’re talking about.  Don’t spend your time on the internet researching autism.  Don’t listen to organizations with Autism in their title, but that have few or no Autistic people occupying prominent positions in their organization.  Don’t believe any of those people who talk about “recovery” and liken your daughter’s neurology to disease or buy into therapies whose main goal is to make your daughter indistinguishable from her non Autistic peers.  Reject ALL of that.  Being able to speak isn’t the only way to communicate.  An Autism diagnosis isn’t a metaphoric nail in a coffin.  

I imagine those years of terror and how different our lives would have been had I met some of the people I now know.  People I have met on the internet, through their blogs, at conferences such as AutCom and the ICI Conference in Syracuse.  Conferences where I left feeling elated and euphoric because I witnessed all that was possible and not all that wasn’t.  How can we move beyond the current conveyor belt of fear that only serves to pad the pockets of Autism businesses run and created by non Autistic people, who do not seek out the active involvement of those very people they insist they are dedicated to help?  How do we dispense hope and what is possible amidst the maelström of deficit thinking?  How do we care for families new to all of this, those families whose children will be greatly affected by their parent’s terror?

We have to give eye-witness accounts of what is possible.  We must have resources available to families that will counter the predominantly negative views of autism.  Resources that do not condemn the parent or the child.  Resources that do not encourage terror, but offer hope and possibility.  Ideally I would have been given the list of books  I have on my “Resources” page and actual copies of these four books:  Autism and Representation Edited by Mark Osteen, Autism and The Myth of the Person Alone Edited by Douglas Biklen, Inventing the Feeble Mind: A History of Mental Retardation in the United States by James W. Trent Jr.  and Representing Autism by Stuart Murray.

Parents need support so they have the energy, patience and optimism to give their child the support and encouragement they need.  Therapists, professionals, educators, experts who are making a living working in the field of Autism must understand the importance of offering hope.  Hope based in possibility and reality.  No one is served by being terrified.  The only people who will be adversely affected if we stop the terror surrounding autism are those whose businesses thrive on such beliefs.  And to all those businesses – I say – Good riddance.

LifeThe possibilities are endless… 

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Posted in Autism, hope, Parenting

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Why Wretches And Jabberers Is Essential Viewing

Posted on May 23, 2013 by | 27 comments

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

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Posted in Autism, Parenting, supported typing, Wretches and Jabberers

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Taking Action ~ Presuming Competence

Posted on May 22, 2013 by | 16 comments

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

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Posted in Autism, Parenting, presume competence

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A “Miracle” or the Norm?

Posted on May 20, 2013 by | 34 comments

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

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Posted in AutCom Conference, Autism, presume competence

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