Tag Archives: New York Times

At What Point Do Our Actions Constitute Torture?

Posted on September 10, 2012 by | 21 comments

The New York Times published an OpEd piece yesterday by Bill Lichtenstein about the use of restraints and seclusion rooms for children with special needs in schools.  Please read by clicking ‘here‘.   Bill Lichtenstein writes, “According to national Department of Education data, most of the nearly 40,000 students who were restrained or isolated in seclusion rooms during the 2009-10 school year had learning, behavioral, physical or developmental needs, even though students with those issues represented just 12 percent of the student population.”

When we speak of a group of people as less than, when we view them through the lens of deficiency, we begin paving the way for the kind of abuse shown in this footage at the Judge Rotenberg Center.

The Judge Rotenberg Center is still operating despite lawsuits, protests and outrage.  The Judge Rotenberg Center, the systematic use of restraints and seclusion rooms in our schools as described in the NYTimes OpEd piece are but a few examples of what happens when we allow ourselves to think of people as “low functioning,” “severely Autistic” or any of the other words so readily used when speaking of Autism .  Those words make incorrect assumptions about a person’s intellect, capabilities and cognition.

When organizations like Autism Speaks and others like them fan the flames of fear by using words like epidemic, devastating, and use war terminology regarding Autism and Autistic people we are creating a toxic environment for those who are Autistic, an environment our children, who will one day grow up to become adults, will inherit.  There is a connection to the current words being used when talking about Autism and the abuse of Autistics.

All of us, each one of us must ask ourselves – if you were unable to speak in a language that those who had power over you understood, if you were spoken of as “broken,” “deficient,” “low functioning” and people treated you as though you were incapable of understanding because you could not make yourself understood, even though you continuously tried, if you were then punished, scolded, yelled at, drugged, restrained, shocked, put into a dark room because you expressed your frustration in the only way you knew how – by acting out, by becoming violent, by self harming –  what would you do?  How would YOU feel?  At what point do our actions constitute torture?

Countless articles have been written about the abuse of disabled children and yet the abuse continues.  Mother Jones published an article  about the Judge Rotenberg Center in 2007, recently updated entitled School of Shock.  

“The Rotenberg Center is the only facility in the country that disciplines students by shocking them, a form of punishment not inflicted on serial killers or child molesters or any of the 2.2 million inmates now incarcerated in U.S. jails and prisons.”

The words we use, the organizations we support, the way we speak to and about our Autistic children, as well as Autistic people, matters.  I have done so many things wrong in raising my daughter, I cannot fit it all into a single post.  I have so many regrets, I could fill several pages with the things I tried all in the name of “helping her.”  Emma could not tell me how she felt about the various treatments and remedies I tried and I never thought to ask.  I’ve written about all of this before, the DAN doctors, the specialists, the pediatricians, the stem cell treatments.  If I sit and contemplate what I’ve done to my daughter with the best of intentions, I can barely move.  I feel devastated.  I know I didn’t mean to hurt her.  I know I didn’t mean to harm her.  I know.  I did it because I thought that as her mother it was the right thing to do.  Now I know differently.  Now I know what I did was wrong.  And the only thing I can do moving forward is write about it honestly.  Talk about it.  I can make sure I do things differently now.  I can make sure I talk about these things openly, honestly, not because I am intent on beating myself up, nothing good comes of that, but because maybe, just maybe others may learn from my mistakes.

What we do, how we behave, what we say and how we say it matters.  This is the ripple effect.

Related articles

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Posted in Autism, language, Parenting

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Service Dogs and Marriage

Posted on February 3, 2012 by | 2 comments

There’s a terrific story in the New York Times about service dogs for people and children with disabilities.  (This post is also about marriage, bear with me. I know it’s a little convoluted.)  The article begins with a couple, who in 1999 adopted two babies from Russia, only to realize after a few years that their son was not developing in the same way as their adopted daughter.  After much distress and many specialists, a developmental pediatrician diagnosed the child with fetal alcohol spectrum disorder.  As the child’s behavior became more problematic and as he grew bigger and stronger, the family’s concerns grew too.  The mother heard about an agency providing children with disabilities service dogs and so she brought this up to her husband, whose initial response was negative.  Over time he came around, they got a service dog, the boy bonded with it, the family was able to sleep through the night without disruption from their son; it’s a wonderful story full of hope for those with disabilities and their families.

As I read the article I had the following thought process:  We need to get a service dog for Emma!  (Forget that she is terrified of dogs.)  If we got a service dog for Emma, she would get over her fear of dogs, which would lead to her finding this particular dog calming, (forget that she’s not an out-of-control child to begin with) and the dog would help her sleep longer on the weekends.  (Forget that we live in New York City and the dog would need to be taken out first thing in the morning.)  Because he would help her sleep past 6:00AM on the weekends, we would also be able to and wouldn’t that be lovely?  (See above parentheses.)  I will not bore you with the details of my continued thinking, anyone with even a passing familiarity with the – If You Gave A Mouse A Cookie – series will know how convoluted the mind can get, if one encourages it.  Suffice it to say, I went from service dog for Emma, to thinking about our adored cat, Merlin, whom Emma ignores, to a meditation on how fortunate I am to have such a sensible and loving husband (who would be completely against this whole idea and he would be right).

Which brings me back to marriage.  I am in no way an authority on marriage, what I can say about it, is to state the obvious – It’s helpful to marry someone you really admire and like.  Adoration is helpful too.  Richard and I joke that it took us about ten years to muscle our way into a good, strong marriage, but thankfully we both kept showing up.  This is where a healthy dose of determination and tenacity can work in ones favor.  Neither of us are particularly good at giving up, in fact, we both tend to stick with something long after we probably should have let it go.  But in our marriage sticking with it has proven advantageous.  It doesn’t hurt that I adore, like, love AND admire the man, even when he’s grumpy.  Even when he doesn’t agree with me.  Even when he shoots down my wonderfully creative ideas – such as getting Emma a service dog – (an idea I haven’t actually verbalized, but know he would not want to discuss) I still love him.  I know somewhere in the dark recesses of my mind that even if he’s not right, he has a point.  A point, that with time, I might be able to come around to, at least, hearing.

It helps that I married an almost perfect man of course.  I know.  I’m very, very lucky.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

This morning Emma wore her new shoes to school

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Posted in Autism, Marriage, New York Times

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From a Mom in Melbourne

Posted on January 24, 2012 by | 2 comments

The following is a comment from the “Redefining Autism” post written by an Australian mom with two children on the spectrum.

“It is what our education department in Victoria does.  They make it so hard for children to qualify under their own made up criteria for what they will actually fund as being autism.  One of those being a severe language delay.  Problem solved, then they just don’t count all the students with an actual diagnosis of autism only those they will fund at school.  They also don’t count the children in my region ( my own 2 included ) who have severe autism, but attend schools for the intellectually disabled.  If you attend such a school you are funded as intellectually disabled and not autistic and so they do not count you in their figures as autistic, never mind where we live, unlike the rest of the City, there are no autism specific schools beyond the age of 9.  Such schools are zoned, so even if we could travel there we wouldn’t be accepted as the schools are so full.  If you can’t survive in a mainstream school with minimal support you wind up in a special school for the intellectually disabled or homeschooled.

We just had a review of autism education provisions for our region, which I was involved in instigating and the Education Department again only released the figures of those students who recieve funding for autism.  It is wicked, given that this region of Melbourne has the highest incidence of autism, but we will never know just how frighteningly high because they only count some students not all those with a medical diagnosis.  One local politician described it as a tsunami.

I read the article you mentioned a few days ago and it is just more of the same.  There is an epidemic – I can see it.  My husband has work mates who have children with ASD, we have friends we knew before they had kids who now also have children with autism, we have a neighbourhood full of kids with ASD, wherever I go – restaurants, swimming pools, shopping, the library – I see children who are obviously autistic.  They can call it what they want, but it isn’t going away.”

Emma was diagnosed with PDD-NOS  (Pervasive Developmental Disorder – Not Otherwise Specified) at the age of two years and nine months.   Given the new criteria proposed, Emma would not have been eligible for the services she was given, which included speech therapy, occupational therapy and Applied Behavioral Analysis (ABA) as well as Verbal Behavior  (VB).  While I take issue with the standard form of early intervention – ABA & VB – as it did not help Emma, we were able to find an early intervention therapist versed in Stanley Greenspan’s DIR (Developmental, Individual-difference, Relationship-based) model, which was at least a bit more helpful.  I have no idea whether Dr. Marion Blank’s program for children would have been covered had we known about it, but it might have been.  Had we begun Emma on Dr. Blank’s program when she was first diagnosed, we would undoubtedly have a child who was now mainstreamed, saving the state and ourselves an enormous amount of money, not to mention heartache, stress and emotional trauma (hers, as well as ours).  I say this with confidence because now, at the age of ten, Emma has made more progress in the past year that we have been working with Dr. Blank than she has in six or even seven years put together.

My distress is two-fold regarding this new proposed criteria and the ongoing discussion regarding autism.  The first is that shifting numbers will not change the fact that the rate of autism has far outpaced our ability as a society to cope with it, and secondly, the standard way of treating autism – ABA and VB being the gold standard, needs to be reanalyzed with better and more stringent studies.  There are a great many children whom ABA/VB have not helped who can be helped with other methodologies.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Posted in ABA, Autism, Dr. Marion Blank

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Preventative Measures

Posted on November 10, 2011 by | 1 comment

The New York Times published a piece in August of this year about the role the environment plays in the rise of autism.  It begins with the question asked by many people who are hoping to become parents  – What can we do to decrease the risk?

I have often thought about what I would have done differently, knowing what I now know.  There are a number of things, things I didn’t know to do or not do when I was pregnant with Emma.  There are a few things that appear to have some scientific basis to them, such as taking prenatal vitamins at least three months before getting pregnant and continuing to take them for the duration of the pregnancy.  I began taking them when I learned I was pregnant with Nic, though interestingly, with Emma I was taking them before I became pregnant with her and continued throughout the duration of my pregnancy.  I would not have eaten any fish of any kind during any part of my pregnancy.  I ate grilled swordfish a couple of times in my second trimester with Emma.  I also used fingernail polish remover a couple of times and had my hair highlighted once during my third trimester.   I would have stopped using all artificial sweeteners and I would have been more careful after the 9/11 attacks by not going downtown to Richard’s office in Soho to work.  Beyond those incidences, I did not take any drugs of any kind, not even aspirin, I didn’t consume caffeine or alcohol, I did not have an amniocentesis, avoided all and any invasive procedures, had two sonograms and gave birth naturally in a birthing center.  It seems unlikely that anything I did while pregnant contributed to her autism, but who knows?

After giving birth I would have done a number of things differently.  From the moment she took her first breath I would have eliminated all onion, garlic, dairy and wheat from my diet while I was breast feeding.  During those first few months when she was so uncomfortable and “colicky” I would have kept a food journal to see if there were other foods I was consuming that upset her and then eliminated those.  Since Emma seemed so uncomfortable when I breast fed and much preferred drinking breast milk from the bottle, I would have tried different techniques in swaddling her or having some sort of soft cloth between us so our skin to skin contact wasn’t so uncomfortable for her.  I would have started brushing therapy (click link for more detailed information on brushing) with joint compressions (see link for a detailed description of joint compression exercises) during this period as well.

Then there are the things I wish I had done much sooner such as  Dr. Marion Blank‘s literacy program instead of all those hours spent doing ABA.  I wish I had discouraged Emma from sucking her thumb.  I would not have introduced corn, soy, wheat, dairy or any foods that are thought to be problematic for some children.  I would have obtained an evaluation much sooner as well as taken her to a neurologist and had an MRI done before she was 18 months old.

Had I done all of those things, would any of it made a difference?  Except for introducing Dr. Blank’s program right away, which I am convinced would have made an enormous difference, who knows?  How much of a role does the environment play?  How much is due to genetics?  I have questions, lots of questions.  None of which will likely be answered any time soon.

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

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Posted in Alternative Therapies, Autism, diets, Parenting

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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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Posted in Autism, Uncategorized

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