Tag Archives: abuse

A Father’s Powerful & Extremely Personal Thoughts on Parenting

Posted on July 11, 2014 by | 45 comments

*This was what my wonderful husband, Richard, wrote as a comment on my post the other day.  I asked him if I could make it a post all on its own.  He gave me permission…

“Pain is inevitable, suffering is optional.”

There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the world. Children must gain that experience with each passing day, hopefully with the guidance, support and unconditional love of parents who put their children’s needs ahead of their own.

But there are a lot of parents who aren’t like that. Mine for example. I was taught from birth that my obedience and subservience were more important than my own needs and desires, or personal considerations. When I didn’t do what I was told to do, or didn’t do it fast enough with a “good attitude” I was yelled at. Punished. Spanked. Slapped in the face. Called awful names. Verbally abused. Degraded. Humiliated. And that happened nearly every day of my life until I left home at the age of eighteen.

My parents constantly reminded me how difficult I was to cope with. How hard I made life for them. If I would only try harder, work harder, move faster, then their lives would be so much better. Their lives.

Me? I didn’t really matter.

I waited a long time before becoming a parent. For years I swore I would never have children, perhaps because I was afraid I might behave like my own parents. And no child deserved that. When I met Ariane, something shifted monumentally in me, and I was suddenly eager to be a dad. I was 40 years old. Maybe I was finally emotionally mature enough to handle the enormous responsibility of parenting. I was ready to put someone else’s needs ahead of my own. Because for me, that’s what parenting is about. Service. My children don’t exist to fulfill my expectations, or make me happy. They exist in order to experience life and fulfill their destinies.

It is indeed hard to be a parent. I empathize and sympathize with all the parents who feel overwhelmed, who don’t have the resources or support to cope well with these tremendous responsibilities. I know life is hard for you. But trust me, no matter how hard you think you have it, your children have it harder. They sense your frustration, your discontent, your fear and panic, your anger and rage, your sadness and depression and hopelessness.

And quite likely, they feel themselves to be responsible. Maybe they are even told they are responsible. They feel guilt and shame. They try harder to make you happy. To not be so upset with them. Because they have learned–deep, deep inside–that they are “the problem.”

I’m talking about all children here, not just autistic children. For autistic children, multiply that angst level by a thousand. If you are autistic, you live in a world where so many people are telling you that you are broken, that you need to be fixed, that you need to be trained, conditioned to “act normal.” If you like to spin around over and over, or bounce, or rock back and forth, you are given the message, sometimes spoken, sometimes not, that this is “wrong.” And therefore, by extension, there is “something wrong with you.”

If you are non-speaking, or have difficulty with speaking, or with other physical issues, life is even harder, because you are being told that there is something REALLY “wrong” with you. Meanwhile, you’re trying to live in a world of “talkers” that constantly underestimate your intelligence and capabilities, who treat you like babies, who give you dirty looks, or tease you, or bully you.

You are put to “work” when you’re only two or three years old, or as soon as it has been decided that something is “wrong” with you. Early Intervention is required, in order that you be “fixed” and/or “rescued.” This is not optional for you. It is mandatory. You have no choice in the matter. And if you can’t speak, you can’t even complain. So it begins. The endless conditioning. The continuous demand to stop being who you are and “fit in.”

And nearly the entire world of medicine and science and education is conspiring to maintain the status quo of the deficit model. Autism isn’t defined by all its wondrous capabilities, but by what is seen as lacking. Autism Speaks continuously fuels the bonfire of “wrongness” with every dollar they spend.

And it has to stop. It is wrong. It is life-killing and soul-killing. And if you, as a parent, can’t see that this is the reality your children are living with every second of every day, you need to open your eyes and ears and heart.

I so wish it hadn’t taken me so long to wake up. I so wish that I could erase all the damage I did to Emma, like subjecting her to the torture of ABA when she was only two years old. But I can’t change the past. I can’t take it back. What I can do, is speak the truth of what I’ve learned to whomever is willing to listen.

My Beautiful Husband and Daughter

Richard and Emma – 2011

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Posted in Autism, Parenting, presume competence

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The Result of Trauma

Posted on February 24, 2014 by | 30 comments

Recently someone commented on this blog, misconstruing a comment made by someone else, attacked that person, made accusations and as I was trying to remember how to block the person from making further inflammatory comments, they managed to write four more focussed entirely on me.   Each comment was more accusatory and hate filled than the next, and though they didn’t get through moderation, I saw them before deleting and successfully blocking the person and their various aliases.  And yet it made me sad to have to block them.

After years of blogging I have learned there is no use responding to such comments, because when someone has made the decision that you are hateful, and untrustworthy, really anything said will be taken as yet another example of what they’ve decided is true and reinforcing whatever it is this person believes.  Ironically, this is what happens to anyone who has been objectified, not treated as an equal or even a human being with respect and dignity, but rather has come to represent something larger than any single person can possibly be.

I have also learned that it is better to remove the offending comments than to allow them, as they do not lead to useful, productive discussion, but instead end up creating a mosh pit of anger and resentment, which can be far-reaching, upsetting and triggering to a great many, as opposed to just the one or two the original comments were directed to.

When a person has been traumatized repeatedly throughout their childhood, made to feel inadequate, told they are inferior, treated cruelly, belittled and teased mercilessly, they grow up believing, at least a little, that they deserved such abuse.  It also is common for that person to then become hyper vigilant of the same sort of cruelty being played out throughout their life with other people. It is a means of survival, as well as a way to protect themselves from more trauma.

For children especially, who’ve experienced on-going trauma, the tendency can be to see this same kind of abusive behavior that they grew up with, in others now that they are older.  Sometimes they may be correct and people really are being abusive, but other times their reaction will be incorrect.  People who wish them no harm, people who even care about them, will be viewed as abusive too, in keeping with all those people who hurt them in the past.  The original trauma will be replayed over and over leading to an unending cycle of trauma, reaction and trauma.

I’m not saying anything new here, you can read about PTSD, trauma and the result of systematic abuse over long periods of time by doing a little research yourself…

The point is, when we as a society, condemn a population of people, whether that is because of skin color, gender, neurology, sexual preference or anything else, we are doing long-term damage.  Damage that will result in an increase in addiction, depression, suicidal ideation, nightmares, anxiety, irritability, anger, difficulties forming close bonds with others and general feelings of isolation are a few of the symptoms documented.

Abuse is like that.  It has long tentacles, reaching out over decades and even entire lives, causing those who have been victimized to respond to others who wish them no harm, as though they were.

There is no easy answer, but if there is a single word that can be used, which will certainly not do more harm, it is love.  I know it sounds trite, too simple and clichéd, but  I believe it is the only answer.  As Emma wrote recently after reading a New York Times article about the ongoing fight for control of a vital highway in Afghanistan, “War is useless for making peace.”  Love has always been the answer.  Even if others cannot hear it, cannot believe it, cannot feel it, those of us who can, must be even more determined and vigilant.  Love.  Embracing those who are in pain, embracing those who are hurting, even and especially when they strike out.  And while we do that, we must protect ourselves and those who need our protection from any who are intent on hurting us with strong boundaries and the help and protection of others.  It’s a tricky balancing act and definitely something I am working on, but I am confident it can be done.

Love

Love

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Posted in Autism, Blogging, Bullying

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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

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Posted in Autism, Parenting, sensory integration

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“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

 

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Posted in Autism, Autistic Role Models, Barb Rentenbach

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The Wisdom of Peyton Goddard

Posted on May 13, 2013 by | 12 comments

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

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

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

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

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

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

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

TASH 6

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Posted in Autism, i am intelligent, Peyton Goddard

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IS Autism an Epidemic?

Posted on October 19, 2012 by | 42 comments

When Emma was diagnosed as Autistic, we read that autism was an “epidemic”.   I remember the figures – 1 in 166.  In 1980 the rate was 1 in 10,000 according to others it was more like 1 in 2,500.  Andrew Wakefield had published his “study” of 12 subjects in The Lancet, regarding his belief that vaccines were linked to autism, six years before.  The Lancet’s retraction of the Wakefield study did not occur until 2010, and the fallout was, at the time of Emma’s diagnosis, being widely felt.  What I didn’t know, until much later, was that Wakefield had applied for a patent just nine months prior to the publication of his, now discredited, study for a new MMR vaccine that he said was safer.  Wakefield, it seems, stood to make an enormous amount of money.  Yet I and many parents like me wondered if there was truth to Wakefield’s “findings”.  Despite subsequent studies showing that his findings were false, people wondered.  After all, autism was an “epidemic” so what was causing the epidemic?  It seemed vaccines provided an answer.

Except, what if there was no epidemic?  What if the word epidemic was being used by organizations intent on raising money?  These were the questions I began to ask.  If autism WASN’T an epidemic, then where were all those Autistic children when I was a kid?  And where were they now?  Why didn’t I know dozens and dozens of Autistic people?  They should be everywhere I concluded and since I didn’t know of any personally, I decided to look for them.  So began my search for Autistic people.  (I know my wording sounds archaic, but I actually meant for it to, because it illustrates my thinking not so long ago.)  I periodically googled phrases like – “where are all the autistic adults?” or “Autistic adults” or “Autistic adults in the work place” or anything else I could think of that might lead me to them.  I found very few.  I came upon Temple Grandin and Donna Williams, whose books I immediately read, there were a handful of others, but the shelves of the “Special Needs” section of the bookstores I frequented were filled with increasing numbers of memoirs written by parents, not Autistic people.  When more and more people began blogging, I started googling “Autistic blogs” and came up with not a one.  For years I would periodically look and when my searches came up empty, I concluded – It must be an epidemic.  It seemed a logical conclusion.  And eventually having concluded that autism was in fact an “epidemic” I stopped looking for Autistic adults.

Then two things happened within a six-week period.  A follower of this blog sent me a link to Julia Bascom’s blog – Just Stimming and another parent encouraged me to read the anthropologist and father of an Autistic child, Roy Richard Grinker’s Unstrange Minds:  Remapping the World of Autism who suggests autism is not an epidemic and the current rates are a more accurate reading of what has always existed.  It was a one-two punch; I began to question everything I thought I knew.  From Julia’s blog I began reading and reaching out to Autistic bloggers.  Through my, at first tentative, communications I began to find many, many more.  It was literally like discovering an alternate reality, and as mind-blowing as anything I’ve ever experienced.  The more I looked, the more I found.  Within eight months I went from not personally knowing any Autistic adults to knowing hundreds of people who are my age and older.

One friend of mine and I were discussing all of this the other day.  He pointed out that many people, like him were beaten, often brutally by their parents to make them stop their undesirable behaviors that might make them “stick out” or in any way noticeable.  He said, “People like me would hide our Autistic traits as best we could.  We were still considered the weird kids and the outcasts, but we were not called Autistic.”  He reminded me that he and others like him were trying their best to remain as “inconspicuous as possible because the only signs we had were the “Kick Me” signs that would be put on us by bullies.”  He then went on to say, “We had to do our best to be invisible and/or find a way to blend in or hide to stop the beatings by family and class-mates.”

As I think about all of this, I have more questions.  What about the autistic girls who were like my daughter?  Would my daughter, had she been born in the 50’s, have learned to “pass”?  And if so, what does that say about our school system, because Emma is in no way near grade level?  Would she have been deemed learning disabled, but taught how to “behave appropriately”?  Would she have, through punishment, been able to conform?  What about her language?  Would she have just been thought a “quiet” child?  The little girl who, if she’d been punished enough, learned to sit silently in the corner?  At what cost would this have occurred?  Or would we have been told to institutionalize her for the “good of the family”?  Would we have been advised to save our son and ourselves from being “dragged down”?  Has our thinking changed so much?

I ask these questions honestly.  It took me a very long time to find all those Autistic adults I’d been looking for since my daughter was diagnosed in 2004.  When I was still looking, I never, not for a second, thought in finding, I would also find hope.   It never occurred to me that I would form relationships that are, not only important to me, but relationships I cannot imagine being without.  Friendships that are vitally important to me, people I love and look forward to seeing and spending time with.  People who would patiently explain to me what it was like growing up in an era that did not “recognize” autism.  People who try to help me understand what it is like living in a society that does not want to see or hear them.  People who do not enjoy the basic rights I enjoy and do not even think about.  People who are condemned, abused and misunderstood.  And yet, that is exactly what happened.

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Posted in Autism, Parenting, vaccinations

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The Insidiousness of Prejudice

Posted on October 18, 2012 by | 26 comments

A year ago, I would have gone to a parent/teacher conference and not thought twice about my daughter being in the same room while we spoke about her.  Six months ago, I knew enough to know that she understood what was being said even if she didn’t indicate that she did and would move to another room or arrange for child care during a conference so she would not be present.

This morning I received a passionate comment from someone who was responding to another comment about parent/teacher conferences.   You can see the whole comment by going to yesterday’s post, but she ended with this:

“These things can ONLY happen in context of a culture of acceptance of the exclusion of Autistic people from discussions about our own lives, and of acceptance of the ‘need’ to speak of us in negative inaccurate terms because that supposedly fulfills some ‘need’ that will bring us help and support. It doesn’t EVER bring us the support we actually need because negative inaccurate information ‘about’ us means any support is founded in untruth and therefore is not help and support of US as the ACTUAL human beings we are.

PLEASE, if you truly want to help Autistic people, stand up for our right to be part of the conversation about our own lives from a VERY young age. Advocating FOR us is GREAT, but ONLY if the purpose of that is to support us in our SELF-advocacy… and to put pressure on professionals to accept OUR voices and OUR choices as the determining forces in OUR lives.”

My initial reaction was a defensive one.  My first thought was – but children are never present at parent/teacher conferences.  And then I realized that isn’t true.  My son Nic is asked to attend our parent/teacher conferences and has been required to attend them since he entered middle school (the fifth grade, the age Emma is now).  My second thought was, but what if one of her teachers or an aide said something awful about Emma in front of her, what if they spoke of her in language that would be hurtful?  I can’t control how others speak.  But then I realized that were this to happen in my son’s presence I would not hesitate in saying something in front of him to that person.  I would correct them and tell them why it was unacceptable and he would hear this and understand that this person was wrong in speaking this way about him.  Then I thought, but wait, we might need to discuss topics that might make her sad, things about self-injurious behaviors or how she ran out into the hallway and it wouldn’t be appropriate for her to hear these kinds of conversations, but again I thought of my son and realized how we would include him in the conversation.  As I went through the various reasons why I couldn’t do what the commenter suggested, I saw quickly just how insidious the ingrained prejudices regarding autism are.  I saw how I still have so much more to learn.  And so I continue to and I tweak my thinking and my behavior and then someone else tells me something and I have to think about their words and then I have to tweak my behavior some more.

Directly after reading this thought-provoking comment (I am so grateful to the writer for having sent it) I received an email from someone I care deeply about.  I do not have explicit permission to write about the specifics so I will not, but it was about where these kinds of ingrained beliefs can lead.  It was about abuse.  It was a story I am becoming more and more familiar with.  It was about someone I know.  It was about a defenseless, nonverbal child.  It was about more than one event.  It was about many, many abuses occurring over and over by many, many different people.  My horror is never lessened no matter how many times I hear of this.  In fact my horror increases.  What I used to believe, what I used to console myself with, that these were unusual, isolated instances of horrible people behaving in heinous way, is not something I can cling to any more.  These stories are everywhere and I am hearing them all the time now.  I cannot console myself that they are unusual.  I can no longer wrap myself in a cocoon of optimistic assurances that this hasn’t happened and will never happen to my daughter, because even if we are lucky enough that they do not happen to our specific child, they are occurring constantly to other people’s children.  How is that any better?  How is that any different?

The abuse of people who are considered “less than” and “incompetent”.  The physical, sexual and emotional abuse that Autistic people and children are having to endure at the hands of people ALL THE TIME that they come into contact with, at school, their care givers, the people they are suppose to be able to trust, their relatives, neighbors, the list goes on and on.  This is going on around us and to those we love and care about.  This is about people who are hurting, not just our children, but people all over the world who are deemed “less than”.  This is so much bigger than “our children”.

Em’s “self-portrait” – 2011

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Posted in Autism, Parenting, self-advocacy

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“You Have To See The Horror, But Not Be Defeated By It.”

Posted on May 22, 2012 by | 12 comments

Yesterday I had lunch with the inspirational and brilliant James Cone, also known as the “father” of black theology, and a professor at Union Theological Seminary. For those of you who aren’t familiar with James and his work, he is the man who wrote the powerful book, The Cross and the Lynching Tree.  Sometimes in life you meet people, people who are special, for whatever reason, they reach us in ways that most people do not.  James is one of those people in my life.

Over lunch, as we got on the topic of various movements:  the civil rights movement, the disabilities movement, the LGBT (Lesbian, Gay, Bisexual, Transgender) movement, he said, “You cannot let your circumstances define you, who you are, your race, your gender or what others say about you.”  And I thought about Emma and how autism is perceived by many as a tragedy.  I thought about how I don’t ever want her to define herself by the way some may see her.  I thought about how that perception does damage to so many, how the way we perceive people is how we justify our treatment of them, how we treat them differently without even realizing it.  I thought about how I want to protect Emma from that.

I thought about the neurodiversity movement and how so many Autists are speaking out, asking for acceptance, asking for respect, asking to just be heard.  I thought about all those Autists who cannot speak, who are non-verbal and cannot communicate their thoughts, ideas and opinions at all.  I thought of those who are called “severely Autistic” and I thought of those who are, at this moment, in institutions or group homes run by people who may not understand them.  People who will use their ideas and perceptions of who they think they are to treat them in ways that will hurt them.  Who fights for them?  Who ensures their rights are respected and considered?   As I thought about all of this, I felt myself falling into despair.  And then James reached over and took my hand.  He said, “You have to see the horror, but not be defeated by it.”

I thought about all the stories I’ve read of Autistics who have been abused, often by their own family members, caregivers, or in homes where they were placed.  The people who cannot fight back because they do not have words.  The people who cannot fight back because even by communicating through other devices they are viewed as less than and so their words are disregarded.  I thought of those who have risen up and despite their challenges are blogging about their experiences.  I thought of the unimaginable horrors they have endured.  “You have to see the horror, but not be defeated by it.”

Those people have lived the horror, the rest of us are only witnesses to and only if we choose to be.  And that is a critical and striking difference.  We have a choice.  We can turn away if we choose.  We do not have to read their stories.  We do not have their memories etched into our brains, their experiences scarring our bodies.  We will not get triggered by those who behave in similar ways to the perpetrators of their abuse.  “You have to see the horror, but not be defeated by it.”

One blog I read not long ago, described in graphic, terrifying detail the abuse she was subjected to at the hands of her stepfather, mother, siblings and cousins.  As I read her post, I thought, this isn’t abuse, this is torture.   I felt nauseous reading her blog.   When I wanted to click the little red button on the top left corner of the page to delete it forever, I had to remind myself that this is her life, the least I could do was read what she’d written.  How do you take what you’ve read and continue living your life as you had been, before you knew what you now know?

“You have to see the horror, but not be defeated by it.”

And I know.  I know I have to keep writing about all of this.  I have to keep reading the stories, they aren’t going to disappear just because I’ve made the choice not to read them.

“Strive toward an ideal,” James said at one point.  He paused and then he said, “Write where the hurt is most.”

And so I will.  I will try.  It’s the least I can do.

Emma in one of her “pretty summer dresses.”

Read My Fear Toolkit published in the Huffington Post

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Posted in Autism, Autism Acceptance, neurodiversity, Parenting

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Aspen Ideas

Posted on June 30, 2011 by | 5 comments

The word “autism” was never spoken at the session of the Aspen Ideas Festival I attended yesterday.  After it was over I wondered if I’d somehow been mistaken and reread the email I’d received .  This is the email I was sent describing the session:

“How to Recognize Happiness  June 29, breakfast,

Happiness as an ongoing state of mind–rather than a fleeting pleasurable sensation–could be recognized by the predominance of positive affects, by an ongoing freedom from inner conflicts that express themselves in obviously tormenting ways, by a sense of inner calmness, and by attitudes that reflect some kind of benevolence toward others, even though in the case of autistic children, all these may not be expressed in the usual ways.”

My guess is one of the speakers was unable to make it and so it became a more general discussion surrounding conflict, suffering and cultivating a practice to help with that.  The moderator was late, having gone for a hike in the woods and found herself lost.  But the Buddhist monk, Matthieu Ricard, director of the Karuna-Shechen a non-profit headquartered in Kathmandu, Nepal, who in France anyway has been given the label of – happiest man on earth – questioned that title, suggesting perhaps this was a difficult thing to test for, given the world’s current population of over 6 billion people.   It was a perfectly pleasant way to spend an hour of one’s morning, especially if one had come to Aspen specifically for the Ideas Festival and didn’t have any expectations. Certainly there is much to be said about cultivating compassion and putting oneself at the service of others.  Just talk to any parent of a child with autism.

What bothers me about all of this is the lack of conversation, the reluctance to feature autism as a worthy topic. It is something I see all the time.  The people, like myself who are talking about it, are doing so because we are parents of children with autism.  Perhaps it’s seen as a downer, after all there’s no cure, we don’t know the cause, so let’s just not discuss it, let’s not have any conversations about it, let’s not even bring it up.  Maybe it’ll go away if we ignore it enough.  It’s got to be such a drag listening to someone who goes on about autism, the statistics, news stories about the rampant abuse of autistic people, it’s intractable nature, blah, blah, blah.  Why can’t I talk about something more cheerful?

Like happiness, for example.

And here’s the thing – actually I can.  In fact most of the parents with children with autism can.  We parents of autistic children have found ourselves elated by a word, a single word coming from the mouth of our child.  It doesn’t take much for us to feel joy.  Our child can hug us and that lone hug is something we remember as though we had received the Nobel Prize.  Maybe, just maybe, we don’t know the cause, we don’t know the best way to treat it, because autism isn’t viewed with the same sort of panic the avian flu received or mad cow disease or any of a number of topics which swept all of us up in a frenzy of terror.

According to the CDC at least 1% of our population has been diagnosed with autism.  That’s over 60,000,000 autistic people world wide.  60 MILLION!  And yet, autism, gets a big yawn.  So here’s an idea, let’s keep ignoring it, let’s all agree not to discuss autism, because what’s the point really?

By the way, just in case anyone’s wondering, I’m the mother of a beautiful little girl who’s Great-grandfather began the Aspen Institute and who’s hope for the future gets dimmer by the second.

For more on Emma’s journey through a childhood of autism go to:  www.EmmasHopeBook.com

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Taking a Stand

Posted on June 7, 2011 by | 3 comments

This blog is about Emma.  It has always been about Emma.  Every now and again I post something about statistics or links to other children or adults who have been diagnosed with autism, the occasional news item, but for the most part, Emma is the star of this blog.  Today however, I feel compelled to write about the children and adults with disabilities who have been institutionalized.  The defenseless portion of our population who do not have parents or families to advocate and defend them for whatever reason.

Yesterday I happened upon an article in the New York Times about a 13 year old boy with autism who was sat on and ultimately crushed to death in the back seat of a van while being taunted, “I could be a good king or a bad king,” by a state employee who was hired to care for the child.  The article goes on to describe in graphic detail the abuse that occurred, the repeated hospitalizations, the horrifying conditions of the Oswald D. Heck Developmental Center,  a state run home for children and people with disabilities near Albany, New York.  An institution which routinely hires high school drop outs, people with criminal records, histories of drug and alcohol abuse and little or no training to care for our most vulnerable.

It is difficult not to console oneself, while reading such an article, with the idea that this was an isolated incident or at least a problem within this specific institution.  Sadly it is not.  Another article, also in the New York Times, which ran a few months ago about the systematic abuse that continues in several group homes was equally horrifying.   The BBC ran a piece just last week on the terrifying cruelty and abuse in homes caring for the disabled in the UK.  In fact, once I began digging around it wasn’t hard to find countless articles about rampant abuse taking place in group homes, state run facilities, institutions, privately run group homes all for the disabled, those diagnosed with autism, downs syndrome, cerebral palsy and the like.  What was incredible was the amount of actual video footage of the abuse, testimony from witnesses, doctors, nurses, hospital records, irrefutable proof and yet it continues.

We talk about torture, the horrors of genocide all in the context of war and yet we have people, here in America, doing unspeakable things to our disabled population and it goes unnoticed, in fact it is even condoned within many of these homes.  There is a “keep your eyes open and your mouth shut” policy at many of these homes.  We have a burgeoning population of defenseless, often non-verbal children and adults who are being raped and tortured.  If you object to the use of the words “rape and torture” consider this from the NY Times on March 12, 2011 by Danny Hakim:

“At a home upstate in Hudson Falls, two days before Christmas in 2006, an employee discovered her supervisor, Ricky W. Sousie, in the bedroom of a severely disabled, 54-year-old woman. Mr. Sousie, a stocky man with wispy hair, was standing between the woman’s legs. His pants were around his ankles, his hand was on her knee and her diaper was pulled down.  The police were called, and semen was found on the victim. But the state did not seek to discipline Mr. Sousie. Instead, it transferred him to work at another home.”

The BBC report on May 31, 2011 – “…Wayne restrained Simone, an 18-year-old who suffers from a genetic abnormality, by pinning her down under his chair for half an hour. Another member of staff holds her in a headlock, despite the fact she shows no signs of resistance.

The footage also shows Simone being subjected to two cold showers in a single day with staff pouring mouthwash and shampoo over her she screams, saying: “It’s cold mum”.

That afternoon, with temperatures just above freezing, Wayne is filmed taking Simone into the garden and pouring a jug of cold water over her head. He only relents and takes her inside after she lies listlessly on the ground, convulsing with cold.

When Simone is unable to sleep that night staff repeatedly pour cold water over her in the corridor, before holding a cold fan to her face.

The day ends with staff dragging her into her room and forcing her to take a paracetamol while Graham, another member of staff, plays the role of German commandant shouting: “Nein, nein, nein”. Despite the serious nature of the abuse Kelvin, a senior nurse, refuses to intervene.”

We say things like – “never again,” we want to believe we learn from our mistakes, from history and yet there is no evidence to support this kind of thinking.  The population that is being abused in all of these reports are our most vulnerable – children and adults who cannot speak out, who cannot accuse, who cannot defend themselves.  And yet it goes on.  There is nothing new about any of this.  The reports of abuse are haunting, horrible, beyond description, the brutality, the sadism, the cruelty is inhuman, all the more so because it is children and adults with disabilities being victimized.

And yet it continues.

What can any one of us do?

We can begin by confronting and honoring what is happening by speaking out against it, by demanding the politicians we vote into office are aware and are willing to take a stand.  This is not a problem that will go away because we want it to, because it’s too painful to read about.  It will only end when we decide it deserves our attention as much as the populations of various countries we have chosen to defend by sending our troops to.

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