A Recipe For Living a Good Life

Posted on July 3, 2013 by | 55 comments

Last night Richard and I had one of our conversations.  It’s the conversation that starts with, “If only we’d known what we know now…”  The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…”  It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…”   And then the other joins in with, “Literally.  We would have literally done everything differently!”

One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now.  How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic.  How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror.  How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…”  “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!”  “You should try…”

I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…

What I Wish I’d Been Made Aware Of When My Daughter Was Diagnosed With Autism
How Fear Drove Me To Pursue A Cure
We Are in This Together
A Fantasy For Parents of Newly Diagnosed Autistic Children
To The Person Who Googled “I Don’t Know if I Can Handle Autism”

What we were told about autism was WRONG.  Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true.  Having an Autistic child does not mean the entire family will be dragged down.  No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family.  Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.

We have been told all kinds of things about our daughter by non autistic people.  Not one of their predictions has come true.  NOT ONE!  Read that again.  Nothing we were told would happen, actually has!   Think about that.  Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now.  But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact.  If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally.  We would have laughed and walked away.

We would not have hired the agency who provided us with round the clock therapists.  We would not have shuttled Emma from one doctor to the next.  We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass.  We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology.   All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much.  The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.

So here’s the truth about my Autistic child:

She is a human being with desires, wants, needs, emotions and feelings, just like any other child.  If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent.  If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes;  I will have led a good life.

Emma and Nic ~ 2003

Em & Nic - 2003

55 Comments

Posted in Autism, fear, Parenting

Tagged , , , , , , , , ,

Shame, Addiction & Autism

Posted on July 2, 2013 by | 9 comments

“We all have shame.  We all have good and bad, dark and light, inside of us.  But if we don’t come to terms with our shame, our struggles, we start believing that there’s something wrong with us – that we’re bad, flawed, not good enough – and even worse, we start acting on those beliefs. If we want to be fully engaged, to be connected, we have to be vulnerable.  In order to be vulnerable, we need to develop resilience to shame.” ~ Daring Greatly by Brené Brown

I’ve written about shame before.  A couple of commenters on my last post about shame told me to watch Brené Brown’s TED talks on vulnerability and shame, which I did.  B. Brown also has several books, Daring Greatly, is the one I’m currently reading, where she writes, “A sense of worthiness inspires us to be vulnerable, share openly, and persevere.  Shame keeps us small, resentful, and afraid.”

Shame is something I am intimate with.  I don’t know many addicts who aren’t.  I’ve written about addiction and specifically having an eating disorder ‘here‘, ‘here‘ and ‘here‘.  The self-betrayal implicit in addictive behavior exacerbates the pre-existing shame, creating depression and self-loathing.  Attempts to alleviate those feelings with addictive behavior only fuels them.  Shame heaped upon more shame is not a recipe for happiness or success.  Ignoring shame, trying to bury it, and trying harder to not feel it, doesn’t work either.

There have been a number of studies suggesting a link between addictive behavior and autism.  I don’t find this surprising given how feelings of alienation, isolation and fractured self-worth all contribute to wanting to seek refuge and escape. Except the thing we are trying to escape from is often ourselves.  Many of us have internalized our shame, particularly those of us who tend toward perfectionism.  Add to this obsessive tendencies, a desire to be loved, wanting to fit in, believing we are “less than” and addiction can feel like a perfect fit and the only way we can survive in a hostile, unaccepting world.

Oddly, we, as a society, tend to attribute laziness and a lack of will power as the reason people eat too much, drink too much or spend more money than they make.  Similarly, people seem to think autism is a choice or at least the behaviors associated with autism are.  These people apparently believe Autistic people can  “lose” their “autism” if they can just be trained to hide their “problem” behaviors or the things they do that make them obviously Autistic.  Many Autistic people talk about being scolded and punished when they were unable to produce the results expected of them when told they needed to “try harder.”  Trying harder will usually make the person feel more terrible about themselves.

I worry about a culture that is conditioned to believe we must ‘train’ our Autistic children to behave in ways that most cannot, or cannot without a massive cost to their self-esteem.  I worry about “autism treatments” and “therapies” whose underlying message is that our children are not okay.  I worry about what our children are internalizing.  I worry about addiction, depression, suicidal ideation, and how those things get set in motion at a very young age from feeling we are “bad,” not worthy and less than. I worry that because many do not understand autism is a neurological wiring, or do not take into account the experience so many Autistic people are describing, we are raising fearful children, filled with shame for who they are as human beings.  Instead of helping our children flourish, encouraging them to be all they can be, we are trying to make them into something they cannot be.

I love this photo of Emma because it captures her in all her Emma-ness!

Emma - 2002

9 Comments

Posted in Autism, Parenting, shame

Tagged , , , , , , , , , , ,

Living Independently on the Autism Spectrum: by Lynne Soraya

Posted on July 1, 2013 by | 22 comments

Unknown-1Living Independently on the Autism Spectrum by Lynne Soraya is described as “What you need to know to move into a place of your own, succeed at work, start a relationship, stay safe.”  In fact, it’s a great deal more.  Lynne, who writes for Asperger’s Diary in Psychology Today and works for a Fortune 500 company, covers everything from proper conduct and attire at a job interview, what to do when stopped by the police, setting boundaries, career goals, work related issues and self advocacy.  My copy is filled with highlighted sections and notations, such as this quote regarding boundaries:

“The unfortunate reality for many on the spectrum is that the training that we receive to help us to “blend in” to the wider world can have the difficult side effect of teaching us to ignore our own boundaries.

“We learn to tolerate pain and discomfort of situations beyond what many others experience in order to appear more “normal” or to “fit in.”

In the margin I scribbled – “encourage a sense of self, listen, honor and respect.  Attempts to teach how to “fit in” ensures the opposite within one’s own self. Feelings of being a fraud.”

And this, in her chapter on safety:

“There are times when you will not want to make eye contact.  For example, for men, making eye contact while in the bathroom or at the urinal may be completely misunderstood.”

I wrote in the margin, “Privilege = never having to think about things like this.”  And, I would add, not only never thinking about something like this, but never having the thought occur to me to think about something like this.  Many of the things Lynne writes about are not only things I’ve never had to think about, they are things that have never even occurred to me to think about.

Another sentence I highlighted regarding encounters with law enforcement:

“If you are concerned as to how your body language or speech patterns may be perceived by the officer or first responder, let her know that you have autism and/or provide an autism information card.  Before you reach for the card, however, indicate to the officer either verbally or with gestures that you will be reaching into your pocket or wherever the card is located so that the officer will not think you are reaching for a weapon.”

And this about job interviews:

“However, the way many charities represent autism, mixed with our culture’s very simplistic understanding of what disability is all about, can be devastating to many of us who are seeking deeper inclusion in the world.  The reality is that I, you, and everyone else on the spectrum need to help the world understand that having challenges – even extreme ones – does not mean a person does not have abilities and contributions to make to the world.  Ability isn’t a binary thing.  Unfortunately, many people who have limited experience with disabilities tend to act like it is, so when challenges are emphasized, lack of ability is assumed.”

Throughout this book I thought about my daughter.  I thought about how, as she grows older, she may encounter, at least, some of these issues.  I thought about how she put music to a slide show of photographs on her computer last night and was so excited because I came in to watch it with her and told her how impressed I was.  I thought about how creative she is with language and how she comes up with ideas and ways of saying things that would never occur to me, I thought of her joy in music and how when she dances, she is without inhibitions or self-conscious thought.  I thought about society and how so many would suggest we “train” her to conform, fit in, and how, many believe, it is all for her own good.  And I thought about how I hope my daughter never feels she must betray herself to appease or please others.

Lynne’s thought-provoking and insightful book is available in paperback and on kindle at Amazon.

22 Comments

Posted in Autism, independence, Parenting

Tagged , , , , , , , , ,

Disability and Society’s Role

Posted on June 28, 2013 by | 39 comments

I have to preface this post by saying I’m still grappling with all of this.  I recognize that while I can intellectually understand something, it takes me much longer to completely “get it” to the degree that I can own it and incorporate it into my thinking.   Perhaps this is a specific quirk to my neurology…  Here goes – Yesterday afternoon something came up that I didn’t understand.  It was surrounding the words “disability”, “impairment” and the role society plays.  It was stated that autism is a neurological difference that can create certain impairments.  Impairments that can lead to disability when not accommodated.  I didn’t understand the concept at all.  I couldn’t wrap my mind around society’s role in creating disability by not accommodating.  I need to backtrack here for a second. Stay with me…

My father was in a wheelchair the last decade of his life due to a horseback riding accident that occurred when he was 40 years old.  Most of us, who do not require a wheelchair, probably don’t think about what can happen to the human body as a result of not being able to stand and walk around.  There are things that often occur as a direct result of being in a wheelchair for the majority of one’s waking day.  Things like sores, atrophied muscles, metabolism changes due to inactivity, which can lead to constipation, a greater risk for infection, etc.

My father’s accident was my introduction to “disability” as the word my father used to describe himself.  I didn’t spend much time thinking about society’s role beyond the easy to spot prejudices people obviously had upon seeing him, how some people were worse than others, either in the way they spoke to him with barely concealed pity or the way they raised their voice or slowed their speech as though he were intellectually impaired as well.  I was acutely aware of the many places he could not go because they were not accessible to his wheelchair.  And I was aware of the physical pain he was often in. But I didn’t think society played a role in creating his disability, but rather it exacerbated it.

I’m going to interrupt this train of thought for a second while you watch the following short video (1:26) via Ollibean, the terrific site that “unites disability-centric news & editorial led content- connecting families, self-advocates, & professionals through social conversations.”

This article (by  Lisa Egan) is a great one, sent to me by the wonderful, incredibly, kind and extremely thoughtful, Nick Walker, who is interviewed ‘here‘ on Shrink Rap Radio.  After I watched the video and read all the links, I felt I was beginning to understand.

My father’s accident left him physically impaired, but with the necessary accommodations in place he could still get around and do many of the things he enjoyed.  His quality of life was greatly reduced because many of the things he once enjoyed, playing tennis, skiing, were no longer possible, but he could do other things, swimming, gardening, spending time outside.  (Still, I feel confusion and can tell, I’m not quite there yet.  I think I have an understanding, without completely understanding, if that makes any sense.  And I’m also getting hung up on semantics.  But I have to keep going with this.)  I understand my father was impaired, but was he disabled?  Obviously he was to the degree that society didn’t do a great job accommodating him, but what about his weakened body and the pain he was in that kept him from pursuing things he enjoyed and would have done had he not been in such physical pain, such as travel?

*Those of you who understand all of this, please feel free to jump in and correct me.  As I said, I am processing!

Autism.  When my daughter was diagnosed I didn’t think of her as disabled, in fact I remember resenting the notion that anyone might think of her as such.   I understood she was different, and, sadly, I also bought into the “disease” thinking, which I’ve written about on this blog.  As my thinking evolved I thought of her as neurologically different from the majority of people and as such would face more challenges in the world, than if she were not Autistic.  Still later, and more recently I thought that because she cannot reliably use either speech or independent typing to communicate yet, she had a disability, but that her disability had little to do with society and was very much a result of the many issues she faced, physically, emotionally and neurologically.

The idea that society could and should do more to accommodate her and those like her is something I have witnessed first hand and am fighting for.  Yet, this idea that society created her disability, either some or all of it, is a new concept.  So last night I spent many hours reading.  This post from Savannah on her blog, Cracked Mirror in Shalott is terrific with great links to four other bloggers whose work I have tremendous respect for:  That Crazy Crippled Chick – A Musing on the Word Disabled, Radical Neurodivergence Speaking – In this place, in this activity, I am not disabled, Yes, That Too – Ablism is to Blame and  Autistic Hoya – Constructing Disability.   And finally this piece from Sparrow Jones, Voices of Experience on her blog Unstrange Minds where she writes, “In contrast to impairment, Reindal writes about disability as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being.”

And this is why all of this matters so much.  Because we as a society are adding to impairment.  My child is Autistic.  There are things that are much harder for her to do than the majority of the population.  Her hardship is exponentially increased by society’s lack of accommodations for her and those like her.  This post about my experience at the AutCom Conference last fall is an example of simple accommodations  easily put into place.  My daughter’s life will be infinitely easier if people were better informed about autism and what that means.

Society plays a role in all aspects of her life, from the education system and how we perceive inclusion, to air travel, where she could be allowed to sit by the window to accommodate her need to look out the window to better manage her stress, just as someone in a wheelchair is given an aisle seat and not expected to sit just anywhere.  I could go on and on, but I’m interested to hear from all of you and hear your thoughts on all of this.

Emma and Henry type to each other with Pascal and Harvey’s assistance

H &E type

39 Comments

Posted in Autism, disability, Parenting

Tagged , , , , , , , , , , , , ,

Person First Language

Posted on June 27, 2013 by | 27 comments

I wrote yesterday about an evolving fantasy of my ideal introduction to autism and what that might look like.  Later I was asked privately about ‘person first’ language.  An example of ‘person first’ language is:  “My child has autism” or “She is a person with autism” as opposed to:  “My daughter is Autistic.” This topic comes up repeatedly so I thought I’d tackle it with a post of its own.  The current language used to describe autism and Autistic people, starting with the insistence among many parents, educational institutions and the medical establishment to use person-first language (read Jim Sinclair’s Why I Dislike ‘Person First’ Language),  is all about deficits, comparing Autistic neurology (inferior) to non Autistic neurology (superior) which is self-serving, biased and continues to further the general public’s misperceptions about autism and Autistic people.

Shame based language, the things we say because we don’t know better, because we’ve heard or been told it’s how, whatever the topic is, should be spoken of, is still shame based language.  For a long time I didn’t understand why person-first language was objectionable.  It seemed “respectful” to speak of the person first before adding their neurology.  Except that autism brings with it discrimination, prejudice, misunderstanding, assumptions about intelligence or a lack of, and so suddenly all those people who are being so careful to describe this person, whose neurology is “Autistic”, are actually implying that they think autism is something to be avoided, it’s something we pity, it’s something we’d like to be sure the person knows, we “understand” and are being careful to give them “respect” except we are doing exactly the opposite.  When we have no particular issue with some aspect of a person, we do not make sure they understand we are aware they are part of the human race.

I will always respect anyone’s personal preference, but in general, I will continue to use “Autistic” because I am not ashamed of my daughter’s neurology and I refuse to convey that underlying message of ‘less than’ inherent in ‘person first’ language.

Autistic perspective on ‘person first’ language:

ASAN – Identity First Language
Shaping Clay – Person-First Language Doesn’t Put People First, It Makes Them Invisibly
Autistic Hoya – A Second Argument Against Person-First Language
Radical Neurodivergence Speaking:  I don’t have autism.  I am autistic.
Amy Sequenzia – I am Autistic

Em

27 Comments

Posted in Autism, language, Parenting

Tagged , , ,

A Radical Notion

Posted on June 26, 2013 by | 29 comments

As I fantasize about a world in which autism is not consider a “bad” thing, but instead is seen as yet another type of neurology with its pluses and minuses, I continue to rewrite the “ideal introduction to autism” with the hope that one day this may actually be a parent’s experience.  I can’t imagine what that would be like, but I know for a fact, it would be a hell of a lot better than the very real, very upsetting, confusing and painful introduction to autism that I was given almost ten years ago.

First off, the literature regarding autism…  more and more there are books and blogs (!) written by Autistic people introducing the idea of autism as another kind of neurology with both innate challenges and wonders.  I’ve listed many of them on the Resources page on this blog.  As there were no blogs (written by Autistic people) that I knew of in the fall of 2004 I went to Barnes & Noble and bought pretty much every single book written on Autism.  Some would say that was my first mistake, as I was greeted with nothing but gloom and doom.  Other than Donna Williams and Temple Grandin, all the books were written by non autistic people about the dire, horrors of autism and what that meant for your child. (And none of it was good.)  Autism was most definitely not something to celebrate.

The idea that autism could be seen as anything but terrible was not even a radical notion, it was a thought that hadn’t made it into the public sphere.  When Emma was diagnosed the big names associated with autism were Andrew Wakefield, Jenny McCarthy and Bernard Rimland.  It was impossible to read anything about autism without those three names coming up.  Parents new to all of this, fumbled around trying to make sense of the various thoughts about cause, was it really an epidemic and how to best serve our children who were said to have been snatched from our protective arms.  I’ve written about the depth of my fear during those first few months that turned quickly into years in numerous posts on this blog.

My fantasy is nothing short of radical, but perhaps one day it will not be seen as such, but instead, will be commonplace.  My fantasy introduction to autism begins with the evaluation.  At least one of the therapists who came to our home in September of 2004 would have been Autistic.  Once it was thought my daughter might occupy a place on the Autism spectrum, more Autistic therapists, social workers and psychologists would have come to conduct the evaluation and talk to us.  This, then, would have been our introduction to autism…  meeting actual Autistic people, who are able to articulate what the challenges are and what the joys are!  People who could offer a balanced view of a neurology that I would be able to identify with and see there was overlap with my own.  People who would gently encourage me to review my own neurology and see that my daughter’s experience and processing of the world, while different from mine, has many similarities.  People who could help me so that I was in a better position to be the mother my daughter needed me to be.

After the evaluation and diagnosis had been made, we would then be given support in finding at least a few Autistic people who were in the profession of working with families with Autistic children.  In my fantasy, Autistic people would be among those creating schools, designing curriculums, teaching academics, conducting seminars for us, the parents of Autistic children, to attend so that we might better help our kids.  It seems to me a radical shift in all aspects of autism, what is said about what it is to be Autistic and what is being told to those who are non autistic, needs to occur.  My dream team would include Autistic and non autistic alike, but it would be a blend of those who presume my child competent, who treat my child with respect, who are interested in my child’s well being and want to work towards her strengths, encouraging her to be all she can be and cheering her on.  photo

29 Comments

Posted in Autism, Autistic Role Models, Parenting

Tagged , , , , , , ,

Trauma & Autism

Posted on June 25, 2013 by | 60 comments

Studies confirm that people who are Autistic often respond to stimuli more intensely than those who are not.  Hypo and hyper sensitivities are often discussed when it comes to vision, taste, hearing, smell and touch in Autistic people.  Often there is a mixture of both hyper and hypo sensitivities in any one person.  (I use these terms because we have a lack of good words to describe these things.  Both hyper and hypo sensitivities are subjective and are used in comparison to non autistic people, which is problematic in and of itself, but for the sake of this post, it is the best language I have.)  What happens to a person who experiences the world more intensely than the majority of people, particularly when confronted with frightening situations, anger, loud noises, etc?

“Recent studies have confirmed that children with autism have very active Amygdalas; the center of the brain that stores traumatic events.” ~ Traumatizing Events and Autism

When Emma was just two, we went to visit my mother, the proud owner of an adorable German Shepherd puppy.  Emma had no fear of dogs, but during that visit, the puppy playfully chased Emma, nipping at her ankles and Emma began to scream in terror.  By the time I was able to rescue her, hoisting her up in the air and away from the puppy’s sharp little teeth, the damage had been done.  To this day, Emma is frightened of dogs and upon seeing one that gets too close, she will cry, “Mommy pick me up!”  Despite the fact that Emma is now much older, the trauma is real and intensely felt.  For years I couldn’t understand how something so (seemingly) benign could cause her such incredible, and to me anyway, over-the-top terror.  I continued to believe this was a fear she would “outgrow” and that it was only a matter of time before she did so.  But so far, her fear, while not as extreme as it once was, is very much intact.

I am on a family picnic.  My parents pull out a french baguette, an imported pâté, a coveted gift from my father’s sister who lives in Paris, and some Swiss chocolate.  I am hungry and excited as pâté and chocolate are two of my favorite things to eat.  On the way home I begin to feel sick.  By the time we return home, I am vomiting and have the flu, but associate the feeling of nausea with the pâté.   It is almost two decades before I can stand the smell of pâté, let alone taste it without gagging.

These are both relatively benign examples of sensory issues intersecting with memory and causing longer term associations, but what about intense trauma such as physical and emotional traumas?  What about the time when the ABA therapist locked Emma, who was only three years old, in her room for 30 minutes, instructing me to stay out or he would pull all our services, while she screamed and begged to be let out?  I know how traumatized I was and continue to be because of those 30 minutes, what about Emma’s experience?  Did this cause untold damage?  Did Emma experience the degree of trauma that I did?  Is her experience even more profound?  What about how she experienced her own mother not saving her from such a person?  How has she integrated these events into her life experience?  Is it felt as the ultimate betrayal?  How will it manifest in the future?

These are the things I think about.  Not because I am intent on beating myself up, but because these are things that happened and I don’t think any of us are served by NOT talking about them.  These are the kinds of dilemmas many parents have experienced.  These are the questions so many of us have. Questions that are, as yet, unanswered.  We have to ask ourselves when we are considering a methodology and those who will come into contact with our children, are they going to be respectful and kind?  Does this methodology presume competence, is it respectful of my child?  Will the person be patient? Will they treat our children as inferior because they see autism as an inferior neurology and one that needs to be “trained” away?

“What does trauma do to the brain?

“Severe or repeated trauma can re-route emergency systems that are meant to be used only occasionally, and leaves them active, like a switch stuck in the “on” position. This can shrink or damage the part of the brain that thinks and plans, and potentially damages the brain’s ability to feel love and safety in the presence of others.

“To deal with this pain and stress, the individual may become more rigid and inflexible in his or her thinking and develop tunnel vision and selective listening. Over time to compensate for the damage done to the short term memory and ability to sequence by continued exposure to our fight or flight response, or allostasis, the individual may develop rituals, become rigid and controlling or “oppositional”, shut down, withdraw, rage, retreat into a special place, or become over-involved in things that help the individual to escape.” ~ Autism and Trauma:  Calming Anxious Brains 

It is tragic that the very methods a traumatized Autistic person may use to calm themselves from the trauma they’ve experienced, are often the very things those who are not Autistic pinpoint as “behaviors” or actions that must be stopped.   Not only is the person trying as best they can to deal with the initial traumatic event(s), but they are often being punished and told to stop using the only ways they know of that actually help them cope, thus creating further trauma.

“Traumatic events often occur during developmentally vulnerable stages in the individual’s life, and in this process become intertwined with the child’s bio- psychosocial development. How easy it would be to dismiss this in a child with an ASD, who by definition is struggling with development of a sense of self, and is uncomfortable in an alien world, even prior to repeated exposure to trauma.” ~  Commentary: Complex Post-Traumatic Stress Disorder. Implications for Individuals with Autism Spectrum Disorders—Part II 

Trauma, in relation to autism, is something I wish I’d heard about during those first few years so that I might have made better and different choices for my daughter.  Those I know who are Autistic talk about their trauma often, yet there is very little written about trauma in relation to autism in the general conversations currently going on.  This must change.

Em with the dogs

60 Comments

Posted in Autism, Parenting, sensory integration

Tagged , , , , , , , ,

A Teacher You Want to Clone

Posted on June 24, 2013 by | 27 comments

Having had a downright, dreadful experience at our daughter’s ABA based preschool that was publicly funded and had come highly recommended, we were determined not to make the same mistake twice.   We found a private school, the only non-ABA based school around at that time and for the next six years she went to it.  She was loved, she was well taken care of and she learned almost nothing.  It wasn’t that no one tried to teach her, it was that the way she was being taught was not a way she was able to learn.  So we hired a private literacy specialist and over the next two years, Emma learned to read and write.  But there was a “behavioral” piece to this person’s program that came at a cost.  I don’t mean a financial cost, though there was that too, I mean a different sort of cost, the kind you can’t completely assess or gauge until years later.  It was the cost that comes with being put into an emotional strait jacket.  So, at a certain point, as I learned more about autism from Autistic people I realized we could not continue, despite her terrific gains in learning to read, write and type.

A year ago we found a public school (most no longer adhere to any one methodology, thankfully) where Emma is loved and well taken care of AND is learning.  Her teacher is wonderful.  The kind of teacher all parents dream of for their child.  Loving, patient, kind, observant, respectful, presumes competence of all the children in her class, smart, has a sense of humor and open to anything that may prove helpful in teaching.  The sort of teacher who takes time out of a Sunday afternoon to sit in on a session with Soma Mukhopadhyay and Emma and takes notes and then asks to borrow books written by Soma on her method.  The sort of teacher who then comes over to our house to do a strategy session and begins to incorporate what she saw and has learned into her teaching.  Suddenly Em’s backpack is filled with material from a grade level curriculum she is now doing at school with this amazing teacher.  The sort of teacher who seems too good to be true.  The sort of teacher you wish you could clone…  The sort of teacher who is better than Xanax, Wellbutrin and Prozac without any of the side effects.  Except that the school year is almost over and this amazing teacher is leaving to teach somewhere else and Emma is entering middle school, so we must say goodbye to her wonderful school and her incredible teacher.

This morning we toured a middle school.  And guess what?  It emphasizes the performing arts AND it looks wonderful, with a fantastic sensory gym and a “theatre room” with photos lining the hallways of the children performing their own musical that they wrote and performed in.  Could we have created such a place more perfectly suited to Emma?  It could be a little closer to where we live, but that would be nit-picky of me.  So come this September, Emma will go to yet another school.  That’s three different schools in three years.  For any kid, that’s a lot of change.  For Em, who was such a trooper about her “new” school last September, I am keeping my fingers crossed the transition will be as positive.  Anyone have a cloning machine perfected?  Because if her current teacher could just be cloned and her head teacher in this newer new school, I’d have no stress at all!

In the meantime, Em will visit her “new” school a couple of times over the summer months.  From what we’ve seen so far, we are filled with hope!

**Em

27 Comments

Posted in Autism, Parenting, Soma Mukhopadhyay

Tagged , , , , , ,

Parenting = Love, Respect & Encouragement

Posted on June 21, 2013 by | 8 comments

One of Emma’s top five favorite IMAX movies is, Born to Be Wild about orphaned orangutans and elephants and the people who rescue and nurture them until they can go out on their own to live independently in the wild.  It’s a beautiful film and during the watching of it, Emma did a running narrative, which was both amazing and insightful because the things she noticed and talked about were not necessarily the things I noticed.  Her observations were all about identifying with the baby orphaned animals and not about the humans who have saved their lives.  This is as it should be, it seems to me.

She was identifying with the small animals, whose lives are dependent upon the human adults to care for them, respect them, nurture them while they are still so vulnerable and young.  I, however, identified with the adults who are feeding, caring for, giving bottles to, making comfortable sleeping areas for, while being careful to not “tame”, so they will one day be able to return to the wild.  I was so relieved to see the human caretakers encouraging the babies to build their innate skills by taking them to places where they could strengthen and build their climbing abilities and offering them materials to make nests or giving them the opportunity to interact with older orphans who would soon be venturing out on their own.

It was impossible for me, as a parent, to view this movie and not see the connections to parenting.  How we try hard to manage that balancing act of encouraging our children to do for themselves, only intervening when absolutely necessary, trying hard to not over identify, to honor and respect our children and not think of them as reflections of ourselves.  Watch for their innate talents and foster and encourage them, join them in their interests instead of trying to foist our interests upon them.  Respect them enough to allow them to make mistakes, encourage them to dare to dream big,  and give them the opportunity to flourish without criticism, but with love and guidance.  In the end, we all want that from each other.  We all want to feel loved and to love.  We all want to be seen and heard.  We all want to feel we are approved of.  We need that.  Children, adults, living beings, we all want to feel we matter.

Unknown

8 Comments

Posted in love, Parenting, Respect

Tagged , , , , , ,

An Interview With Tracy Thresher of Wretches and Jabberers

Posted on June 20, 2013 by | 12 comments

Wretches and Jabberers, the not-to-be-missed documentary by Oscar Award winning and two-time Academy award-nominated filmmaker Gerardine Wurtzburg, follows two non-speaking Autistic men, Tracy Thresher and Larry Bissonnette as they travel the world, reaching out to other non-speaking Autistic people in an attempt to change public perceptions surrounding intelligence and autism.

I’ve written about the film ‘here‘, ‘here‘ and ‘here‘ and about meeting Tracy and Larry, ‘here‘, ‘here‘ and ‘here‘.  I cannot emphasize enough how mind altering this documentary is. It is imperative people begin to examine their own ideas about what intelligence is and what that means, particularly as parents of children who may be similar to Larry and Tracy, who appear profoundly disabled or have difficulties with verbal communication.  Tracy and Larry exemplify all that is thought to be “other” and yet, when they type, they are eloquent, often hilarious, articulate and philosophical, as well as insightful about society’s view of them.  After watching Wretches and Jabberers, one cannot help but conclude we are all more alike than not.  The divisions we perceive are shown as constructs of our own making.  The biases we have towards those with disabilities is something we all must actively change.

A few months ago Tracy Thresher generously agreed to answer a few of my questions.  What follows is our conversation, but as you read this, please think about questions you may have and leave them for me in the comments section or email me privately with them at:  emmashopeblog@gmail.com.  (Do tell me whether you prefer to remain anonymous as I will credit you with any questions I end up using, unless you prefer I do not.)  I intend to submit this interview, once it’s finished, to Huffington Post and hope it might inspire people to reconsider their assumptions.

AZ:  Tracy, how would you describe the documentary, Wretches and Jabberers?

TT:  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. Our journey takes us to places of enlightenment and our humanity, humor and intelligence comes shining through our typing. Our mission to spread the reality of our amazing intelligence through our typing is our way of promoting the Presumption of Competence dispelling myths. Our story is one that is a road trip for two friends who are in Larry’s words “more like you than not”.

AZ:  “More like you than not” is such a wonderful description.  So much of the literature surrounding autism is about the “deficits” of Autistic neurology compared to non Autistic neurology. Can you talk about the assets and the similarities?

TT:  In my way of thinking, my experience initially was uncontrollable anger for the life I had trying to break through the misunderstanding in school. Kids can be brutally honest, reflecting the language that was the accepted norm in my childhood. Labeling kids is crippling. MR (mental retardation) on a diagnostic chart equates to NOT a candidate for the honor roll. Now I am able to communicate the reality of autism. I met Monk Hogen during the filming of “Wretches and Jabberers”, shining his wisdom on my autism. My true desire and purpose in life is breaking the walls of injustice down and my autism is the gift God gave me. I now focus on how I am connecting with all kinds of people through my work on the road. The high I feel in my own community is so wonderful, knowing that people want to know me. The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.

The anger on stage during my presentation in Japan was related to the lost opportunities in my education. I kept shouting out my automatics like “Look at me now! The kid you told one another to keep in isolation now is mentoring students which is healing salve to old wounds of injustice.” The other anger in Sri Lanka is more about the heat in the way it took my overly heated mix of perspiration soaking my clothing to extreme discomfort. Also, the popular foods in their culture are not in my comfort zone. Finland washed my anger, turning my heart to love of the climate. The cuisine helped too. Primarily, beautiful lands of countryside put my spirit at ease. Henna melted years of lost hope by crumbling away the feelings of isolating my heart to love.

People in the world often fear the paradox that autism usually presents. Larry and I mostly felt gracious vibes in our travels but the camera crew likely alters reality. To reflect on the cultural attitudes, the typing of my international friends is the true compass pointing to injustice.

AZ:  For children who may be trying to cope with similar frustrations and anger, what do you suggest to them and their parents, teachers and therapists?

TT:  This is 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.

AZ:  Was there anything others might have done to help you when you were overwhelmed with anger?

Harvey and I have trust in our partnership. I need his firm yet kind support to stay on course with managing my autism. Harvey and I work well together. Typing is my outlet and open communication is the key.  Long term shared goals helps to keep me on track. Harvey’s commitment to my communication is the big time dosing of calm energy that I need. The commitment to presuming competence is the major breeze of refreshing air to cooling anger.

AZ:  You communicate by typing, but need someone to support your typing.  Why is it necessary for you to have someone supporting you?

TT:  Impulse to type out my most irritating automatics like going to radio stations or wcax news gets looping in my mind. Having good facilitators is helping me to slow my typing to think and connect to my inner thoughts. I also need high goal of working on fading physical support to be more independent and type with lessening support. Building trust is critical to fading.

Tracy Thresher

12 Comments

Posted in Autism, Autistic Role Models, Wretches and Jabberers

Tagged , , , , , , , ,

Walk Toward the Light

Posted on June 19, 2013 by | 24 comments

First there was the evaluation.  The therapists, the psychologist, the questions. Everyone arrived with their little bag of toys that remained untouched by session’s end.  Some tried to interact, others just observed, but all, eventually, turned to us to ask pointed questions.  Questions meant to gather information, but that felt like tiny daggers, cloaked in kindness, laced with concern.  They jotted down things we could not see, little bits of information they would, no doubt, refer to later, once back in the safety of their office.

Meanwhile we were in the midst of it, with our child who behaved in ways we couldn’t anticipate and often did not understand.  None helped us with that. Their reports finished, their conclusions made, their notes and jottings summarized into a single word – autism.  Delivered to us by phone, we were told, like a psychic delivering a premonition, the cold, hard “truth”.  Our daughter’s life, suddenly bled of joy, like so many leeches placed on a feverish body, draining her of all vibrancy.  Her bright future no longer bright, she was categorized.   Her deficits itemized and highlighted, her strengths dismissed or ignored, the solution, the remedy, the therapeutic interventions, the “behavior modification” programs could now begin.  If we were lucky she could be trained.  She could be “modified”.  She was young, we were reassured.  There was still time.  We were congratulated for having caught “it” so early.  Early intervention was key, we were told.  Intervention…

That was the beginning.  That was the beginning.  Instead of reassurances, we were given dire statistics, useless advice, asides about inner strength, courage, even “god” was evoked with alarming frequency.  People learned of our news. Carried along on the same wave of terror, they tried their best to conceal what they really thought.  Some were more successful than others.  Some, couldn’t help themselves, in an ill-conceived attempt to prop up, they said things like, “I don’t think I’m strong enough to have such a child…” or “I wouldn’t be able to handle it if…” or simply “How do you do it?”  and with each, the darkness crept closer, enveloping us in arms of sadness and pity.  The darkness became familiar, soon, without realizing it, I had embraced it and found others who felt similarly.

What I would have given to have had my Autistic friends there with me during that period when everything was so scary and the unknown loomed before us like a dark  impenetrable wall.  What I would have given, for someone to say, “You are frightened now, but they do not know, they do not understand, they may mean well, but they cannot help you.   You see, they are coming at all of this from the perspective of their own limited neurology.  They cannot see beyond what they believe to be true.  But there is another “truth” and it is one they are unable to tell.  The words they use will only lead you down a path you must reject.  It is a path that will descend into more fear, more terror.  It will not lead you and your child to anywhere you want to go.  Come with me, instead.  Walk with me.  Walk toward the light.

In my ever evolving fantasy of – What if? – I imagine all my friends… my friends who are Autistic, some of whom do not speak, some who do, some have similar interests as my daughter, others do not, but all… all share her neurology… and it is towards them that I walk.  It is with them that I surround myself.  It is with them that I choose to be among, because they know.  They know what it is to be Autistic.  They put beauty in the word “autism”.  It is their faces, their words that I think of when I think about autism and my fear is vanquished.  Fear, now replaced with pride and hope and joy that my daughter is part of such a caring, loving group of people; I am relieved.   A community who has come together to care for each other in a world that continues to ostracize, segregate and criticize, this is the community that stands with their arms open wide, in acceptance, in celebration of all that my daughter is and will become.

Walk with me… walk toward the light…

Rainbow Clouds

24 Comments

Posted in Autism, Autism Acceptance, Parenting

Tagged , , , , , ,

Muddying the Water: Alleviating Pain ≠ “Recovery”

Posted on June 18, 2013 by | 37 comments

A few months ago I wrote about how, once we were given an autism diagnosis for our daughter, so many of the things we believed were uniquely and wonderfully “Emma”, were suddenly thought to be examples of her “autism”.  Things were either categorized as a deficit or a “splinter skill”.  Splinter Skills and Other Words We Use concentrated on talents, interests and abilities.  My friend, Chavisory reminded me yesterday of the physical issues often mistakenly believed to be part of autism.  Things like allergies, insomnia, GI problems, epilepsy and food and eating challenges that often people who are Autistic have, but that many in the general population also experience.

Chavisory mentioned in her comment, a NYTimes article about a drug trial thought to minimize social withdrawal in Autistic people and those with Fragile X.  She wrote, “social withdrawal is not actually a core feature of autism. It’s a consequence of deeper issues with language, sensory processing, and motor differences.” Chavisory’s point is an important one.  This distinction is critical.  Not only because researchers are often trying to treat something that is actually something else, but because it confuses caregivers into believing they can “cure their child of autism”.

When a non autistic person has food allergies or insomnia, we say they have food allergies or insomnia. When an Autistic person has a food allergy or insomnia, many believe it to be yet another aspect of their autism.  People talk about “co-morbid” diagnoses of an Autistic person as though it were all folded into the autism diagnosis.  The problem with all of this is, it muddies the waters and makes people misunderstand what autism is and isn’t.  And it opens the door for many to believe they are curing their child of autism.  Taking care of allergies, GI issues and insomnia will not make an Autistic person non Autistic, however it will make them feel a lot better.

When an Autistic person with food allergies or debilitating insomnia, who also has hyper sensitivities to texture, taste, smell and sound, is given melatonin to help them sleep or a diet that complements their specific constitution, it stands to reason they will exhibit behavior that reflects that.  When anyone, who is in extreme pain and exhausted is helped to have that pain and exhaustion alleviated, they will feel better.  They will be able to smile perhaps, focus, be more alert, even engage in conversation, with an ease they would not exhibit when overwhelmed with pain and exhaustion.  But when this person happens to be Autistic, people use language suggesting their “autism” has been reduced; words like “recovery” and “cure” creep into the conversation.

Suddenly people become convinced that every Autistic person has food allergies, GI issues and sleep disorders and therefore ALL should do x, y or z.    If that doesn’t work, instead of questioning the underlying issue (that perhaps this person does not have an allergy or insomnia)  many will up the ante by doing more radical “treatments” to treat an allergy or condition that the person actually does NOT have.   Logic falls away.  Common sense is rejected.  The pursuit of a perceived “problem” that may have never existed is discounted as not the problem.   The answer is to pour more money into finding the thing that will remove the “autism” even though autism is not what is causing the pain and discomfort.  Special doctors and “autism specialists” are brought in to advise and treat.

When we start throwing all kinds of things at an “autism” diagnosis, when a massive array of physical and emotional things get added, when temperament, interests, preferences, talents become embedded in the “autism” diagnosis we are causing far more confusion and problems to an already confusing diagnosis.  And people misunderstand and say they’ve “recovered” their child or their child has been “cured” instead of recognizing that what’s really happened is they found something that helped their Autistic child, who had allergies or insomnia feel better.  Meanwhile thousands more, who pursue similar ‘treatments’ with no benefit to their child, conclude they need to find a better doctor, or treatment, or diet instead of acknowledging their child doesn’t have an allergy.

Em listening to an opera rehearsal over the weekend 

*Emma

37 Comments

Posted in Alternative Therapies, Autism, Parenting, sensory issues

Tagged , , , , , , , , , , , ,

From Cure to Celebration

Posted on June 17, 2013 by | 39 comments

Yesterday Richard wrote a wonderful post on his blog entitled ~ Happy Father’s Day.  In it he talks about being a father and how having children has changed him and his life.  He ends the post with, “To all our children, thanks for making our lives matter!”  I love that.  That’s it, right there.  That’s the feeling I’ve had, but couldn’t find the words to so beautifully or succinctly express.

Richard also wrote, “…We got a beautiful boy, Nic. Eighteen months later, we got a beautiful girl, Emma. One of each, as they say. We got “one of each” in another way, too. One autistic, one not.”  I read that and smiled, because it’s so true.  We have been fortunate enough to have a child of each sex AND of two different neurologies!  Three years ago I would not have been able to write any of this, I was still in the – Autism is tragic – mindset.  But happily all of that has changed. Some people object to those of us who have chosen to celebrate our child’s neurology.  They say we are sugar-coating what is real and difficult and makes it seem less serious than it is.  I disagree with that thinking.  I think we can still acknowledge the massive challenges our Autistic children face in this world, while still celebrating who they are and the beauty of their specific way of thinking and being.

I do not, for a second, believe that my daughter has an easy time or that she will not face all kinds of things a non Autistic peer would not have to deal with, but I do not need to increase her challenges by not accepting her, believing in her and celebrating her, exactly as she is, now, in this moment.  Adding my expectations, despair and ongoing critique and comparison of her, to the very real issues she must cope with on a daily basis does not make her life easier.  And I really want to make her life easier, not harder.  I’d like to be the person who champions her, makes the bumps she will inevitably face a bit less bumpy and help her navigate some of the twists and turns of life, by giving her acceptance and unconditional love for every aspect of her being.

I keep thinking about all our children who have trouble speaking, how when they are able to communicate in some way, either through typing or speaking, we non autistics are far more likely to listen and assume intelligence than not.  I keep wondering what would happen if all our time, money and energy were spent on finding ways to help our children communicate through typing and other AAC devises, instead of on cures; would we see a shift in society’s perception regarding autism?  Or would all those people dismiss their words because they are written and not spoken?  Amy Sequenzia writes about this ‘here‘.

You see, we were one of those families who pursued the bio-med route.  For years I tried all kinds of things, thinking we could cure.  As long as I believed in a cure, everything else took a backseat.  What I didn’t realize was that accepting and celebrating my child, fully and without amendment was the answer I had been looking for in all those doctors and specialists who claimed cure remedies.  The remedy wasn’t a cure, the remedy was celebrating the child I have, exactly as she is – that’s the remedy.

Nic & Em

 

39 Comments

Posted in Autism, Autism Acceptance, Parenting

Tagged , , , , , , , ,

To My Father

Posted on June 14, 2013 by | 16 comments

I had a complicated relationship with my father.  One of my earliest memories of him was when I was no more than four years old.  I knocked on the door to his “in home” office and waited for permission to enter, just as I’d been taught.  Upon being told I could come in, I went over to his desk where he was seated and asked, “Why don’t you ever call me into your office?”  He smiled at me and replied, “Because you never do anything wrong… yet…”

It was the early 60’s.  Having children was not viewed with the same kind of thoughtful consideration it is given, by many, today.  Mothers were expected to stay home, while fathers were expected to go to work.  In-home offices were considered unusual.  Personal computers did not exist.  My father made notes and calculations on hundreds of pieces of paper.  It wasn’t until I was in my twenties before I could reliably decipher his illegible scrawl.  During my teens I fought with him daily.  I was more in touch with my animosity toward him than love.  During my twenties, his glaring deficits outweighed his assets.  It wasn’t until my mid-thirties that I was able to begin to forgive him.  My last memory of my father, aside from his actual death, was when I went to visit my parents after a grueling and unexpectedly, emotionally, draining trek in Nepal.

I can still remember the sound of the gravel under the wheels of the car as it drove down the slight incline of their driveway.  I can still picture my father seated in his wheelchair waiting for me, under the fig tree to the left of the front door.  I can still remember the feelings of emotion – relief, love, exhaustion and gratitude – that I felt upon seeing him there waiting.  I ran to him, crouched down so I was eye-level and threw my arms around his neck.  I remember the words I whispered into his ear as tears streamed down my face,  “I am so happy to see you.  I love you so much,” I said.  And then I kissed his wrinkled, tanned cheek and didn’t let go.  “I am so grateful you are here,” I said between sobs.

I remember the look on his face, the emotion expressed in those blue, blue eyes of his.  He smiled at me with so much adoration and love and said to my mother, with a slight grin, “I think we should send her off to Nepal every year.”  And then he placed his hand on my head and stroked my hair as I wept.

That is my favorite memory of my father.  Not six months later he was dead.  I am as grateful for that memory today, as I was seeing him that day, now so long ago.

Emma - 2008These are your grandchildren… (Taken in 2008)

Nic -0 2008

16 Comments

Posted in Gratitude, love, Parenting

Tagged , , , , , ,

“People Have to Listen”

Posted on June 13, 2013 by | 3 comments

Stop Hurting Kids is a campaign to “end restraint and seclusion abuse in schools.”  Restraint and Seclusion: Hear Our Stories is a 27 minute film by documentary filmmaker, Dan Habib.   Creator of Including Samuel and Who Cares About Kelsey?  Dan Habib is “Filmmaker in Residence at the Institute on Disability at the University of New Hampshire.”  The transcript of Restraint and Seclusion is available here.

For those of you who do not have the time or inclination to watch the film, here are a few quotes from it, which I hope will serve to pique your interest enough to watch the film in its entirety.  Because this is happening all around us, because this could be one of our children, because we, as a society, must become aware of what is going on, because without awareness and protest this will continue, because prejudice and brutality are not the answer, because as Barb Rentenbach continues to remind us, I might be you, because as my daughter, Emma has said on numerous occasions, “People have to listen.  Mommy, people do not listen to Emma.”

“The National Disability Rights Network reported that in recent years, the misuse of restraint and seclusion has resulted in hundreds of deaths and thousands of injuries.”

Peyton Goddard – “It was bruted power jired by purses wrongfully called teachers trying to beat I. This war wasted my rest. The sweet in I evaporated out.”

Helena – “He slammed me up against the wall, arm barred me across the throat and lifted up so I couldn’t breathe. And then whispered, “How am I supposed to talk to you nice and slow so you can understand?”

Wil Beaudoin – “One particular day we went to see my son and we were going to give him a haircut. So, we took off his shirt and he was covered with bruises and abrasions, fifteen to twenty on his body…everywhere.”

Peyton Goddard – “Fright opted I timid, silent and unable to fight back. Telling myself sweet lies that the tortures did not matter.”

Brianna – “I did not have a speech-generating device. Good evaluation would have made that happen. I tried to tell my mother. She did not understand me or she thought the teachers knew everything.” 

Peyton Goddard – “Try to see potent powerful potentials in each pierced person. There you will free their gifts. There I can feel I’m treasured. There nary I’m fret. I’m ready. Are you? Try please.”

Larry Bissonnette, Peyton Goddard and Tracy Thresher at TASH

TASH 6

 

3 Comments

Posted in Autism, Autistic Role Models, Barb Rentenbach

Tagged , , , , , , , , ,