Autistic Adam

When Adam is sick my already protective mode goes into overdrive. His first ear infections, fevers…I never leave his side and I mean NEVER. Early fevers were accompanied with wails in the middle of the night. Stomach flus also in the quiet darkness of three in the morning, were consoled only with the soft moving shapes – triangles and squares dancing to Beethoven and Brahms on a computer generated video. Ear infections turned to his first surgery and general anesthesia for tubular implants. The surgery was a mere fifteen minutes, but I’ll never forget how the insensitive hospital staff would not let me in until he woke up. He hadn’t yet turned three. As I entered the recovery floor, I could hear his wails from down the hall – I knew my son was wondering where he was and where I was. When I arrived, I still could not console him. We had to wait thirty more minutes to leave until his vital statistics were satisfactory. Finally, when I said we were going home, he stopped crying instantly.

So often, parents of very young autistic children assume that they don’t know what’s going on around them – that they are confused. Surely, a disorienting procedure and environment would have one believe that this would be more so when Adam was in the recovery room. But I’ll never forget how he calmed down as soon as I said we were going home. Grandma was waiting in the hallway with a balloon which he gladly took.

When we brought him home, I put him in our king-sized bed so I could lie with him, and I did all day. I would not leave my son for an instant while any anesthetic was still wandering through his bloodstream. Seeing my little guy otherwise so lively and endlessly moving, now still and quiet, was scary. When eight hours had passed, and he wanted to eat, when his eyes became alive again, I was relieved. Adam and his autism were back. The world was right again.

Then, he needed dental surgery for overly soft teeth that were already decaying despite all the attempts to clean them. Nothing stopped me from doing the exact same thing, except this time, I spent days before calling the hospital to advocate for him and to get me into recovery before he woke up. I asked for a sedative before anesthesia so he wouldn’t have a melt-down (he now was warry of hospital staff doing anything to him). I asked well in advance that I administer the sedative myself (otherwise he would not have received a sedative at all). I knew just the right way to get him to swallow it without spitting it up, without fighting. I advocated to get suited up to accompany him to surgery and to hold him while he was given anesthesia. And, this time, I was there when he woke up. I knew just what songs to sing when he woke, how to orient him enough to let him know that I was there and everything was going to be okay. This time, he got a private room to recover in. He didn't cry. I know that Adam trusts me. He will run to me first whenever he is scarred or ill.

This is a rite of passage for a parent of an autistic child: learning how to advocate in a way that does not discriminate the child, but instead advocates for the child’s need in a way that others can understand and respect. I don’t just say Adam is autistic as it tends to mean nothing, or leads to a perception where doctors will raise their voices and treat him as a behaviour rather than with sensitivity. I explain the particulars, our experiences and our successes. I can tell you with certainty, it is extremely worthwhile.

I’ve decided to write this section because it occurred to me that doctors, illness has been a major part of our lives since Adam was born – when he was a year old, he had his first terrible ear infection in Florida and went on intravenous. This was my first horrible experience – Adam was so ill for days with a huge fever. Adam was sleeping day in and day out and family was telling me not to worry until I finally put my foot down and said that I was heading for the hospital, and it was a good thing I did. Coming from a family where there are ten grandchildren, people in my family thought they knew everything about parenting and taking care of children, for good reason. But I quickly learned that they did not know about Adam, about his idiosyncracies, and my instinct was always right on.

I think this first experience for Adam was the beginning in traumatic sensory overloads and just general fear: bright lights, hospital staff holding him down while I tried to console him by singing in his ear. I cringe as I write this…there is nothing you can do when your very young child needs intravenous or blood tests. I can still feel so helpless and all I can do is offer my presence, my voice, and my hugs. As we grow up together, Adam and I, we are getting a little smarter about the advocacy part.

The last two days, I have been by Adam’s side as he fights the croup again. It happened last year – another first experience with it -- he couldn’t breathe once we got to the doctor’s office so they had to give him an oxygen mask. He was terrified at that mask. With the hands or myself, my mother, the nurse, we all got Adam to sit still enough to take the mask. When we reach the doctor’s office, he hates it and wants to turn around. Today was no different. I said the “doctor will make you better.” He cooperated but not without Henry’s assistance as his ears had to be checked again. But I did notice for the first time today, he began to calm down during examination, where he used to fight a whole lot more. He is growing up, my guy. He is learning that the ear examination will not hurt. It wasn’t something anyone else in the room noticed but me.

So he suffers again today as he watches Elmo in Grouchland, only half-there, nearly ready to drift off to sleep, so his little body can fight some more. He probably hates the movie, but he doesn’t care. A healthy autistic Adam would fight for another video – he would open the drawer, grab the one he wants and give it to me. Or, he might say ABC, meaning that he wants an ABC video. You see, when Adam is sick, I always want my autistic Adam back. He is alive, full of vigor, curiosity. How anyone can say autism is like cancer baffles me, if not angers me. How can ANYONE compare autism to cancer?!! As Adam lies beside me as I write this and struggles for air, I bet any parent who is on the brink of losing a child would trade it in for autism any day.

I couldn't be prouder of my son, more in love with any child. It is always natural to wonder what could have been without autism. But autism is here and I don't mind a bit. I mind the stigma. That part of autism and disabiltiy is the heart-breaking part. Here is Adam recently (on the left) with his facilitated play group in my home, baking muffins...in a healthier state. This is what life is supposed to be like, right? I guess autism isn't that remarkable afterall.

  


"Having failed to distinguish thoughts from things, we then fail to distinguish words from thoughts. We think that if we can label a thing we have understood it."
-Maha Sthavira Sangharakshita

CBC Television

Just to give Canadian readers the heads up, I will be on the Gill Deacon show tomorrow at 11 a.m. and 2 p.m. EST on CBC.

Mourning Ulysses

As I said in my last post, I returned to Toronto to more disturbing news reports, primarily the one by Margaret Wente in the Globe and Mail and how she portrayed the autistic person -- a person doomed to a life-sentence of head-banging and screaming. Every time someone's face frowns at my son when I mention autism, when someone says "I'm sorry" when I tell them that Adam is autistic, I blame news reporters like Wente who neglect to do their research and have never met the likes of my son Adam, or do not make the attempt to speak to the many adult autistics living in Canada today.

I am horrified that nearly every couple of months, there is another story, another murder. And what do we hear in the media of it? Will the media cover the connection between pejorative commnetary about autistic people, the constant disrespectful misrepresentation of the autistic person and these murders? If epidemic innuendo could stop, if parents, autistic people, scientists could work together without prejudice, if we could respect every autistic person....if only....

More So-Called "Advocacy"

I went on a little R & R this past week to return to disturbing news reports. I came home to my happy little cherub, Adam, and every time I go away I am reminded of how big he is suddenly getting…how independent he wants to be, and is becoming, and yes, all without an intensive ABA program, but a diligent program of OT, SLP, JK, facilitated playgroups and one-to-one teaching and lots of visual schedules, books, choice boards and computer learning.

He still doesn’t say “mommy, mommy,” when I walked excitedly to his room. Instead, I asked him to sit in my lap as he watched TV after a long day of his own, as he got used to me being back, wrapping my arm around his tummy. A few minutes later, he could look at me and smile. I guess it was just before bedtime, there was commotion and he needed a few moments to take it all in.

I love Adam so much it brings tears to my eyes. I try to have compassion for all these parents who are fighting for their ABA services, when they say that their children give them “joy despite the autism.” I scratch my head at that one, because autism isn’t curable, and it is a part of their child. I also know that down here in the trenches, it's a little different than what the advocates say or what the media might compel you to believe. It really all is pretty gemischt down here.

It is perhaps for this reason I have compassion for real feelings of loss – myself watching intently an adorable little baby pointing and interacting with practically the entire air cabin this evening, with a bit of a pang in my stomach on the one hand for all the things I didn’t see in my infant Adam and curiousity for what this baby was doing in terms of "development." Then I think and wonder why these little pangs still come and I know – it is not the Adam that I didn’t have, it is the world that may never understand him – the parents and reporters who would have you believe that autism is a life-sentence without ABA, that autistic people will forever bite you and bang their heads without it. It is the fear I feel for Adam's future that he may always have to hide his label or else be sugjugated to quick judgement. How will my little guy, so tender at nearly five now, be able to handle it all? A mother's perogative to worry, I suppose, so long as the worry doesn't transfer or debilitate.

So, to some extent, I have compassion for how parents feel, and I consider that there is a hairline that keeps all of this apart. At least that’s what I would like to keep thinking.

But when I read parents with this special agenda to take all other services and special education away from our children EXCEPT ABA – who suggest that our children – my child – should be institutionalized without ABA treatment, then my tears or worry flow a little faster. I consider escaping to a small town, to homeschool – absolutely anything that might protect Adam’s dignity and ability as an autistic person – and of course, to protect him from the non-autistic people, parents and some media, who insist on speaking pejoratively about autistic people – their own children in fact – as non-sentient beings. I have compassion for parents who want to find the safest, most welcoming environments for their children, even if it happens to be an ABA school. But the world needs to know that many of us parents who have tried ABA programs, have been appalled at the poor quality of service, and lack of overall knowledge about autism in so-called “therapists,” and the arrogance and lack of understanding in some of the “psychologists” and other professionals. As I’ve said, I’m not against all behaviourism per se (although if you want to know the roots and perils of it in pedagogy, read Alice Miller’s work) – it’s employed for changing all of our behaviour – exercise, diet, relationships – all behaviour can be altered. We also live in a world where in order to function, some conformity is required. But is autism just a behaviour to be altered? Is normal the gold standard of autism "treatment"? And if an autistic child never becomes “normal” (and they won’t), they are only suitable for institutionalization? I cry and fear for Adam because of this. And so should all of you.

What if we gave permission to these parents to mourn, but to also accept autism? What if we said, okay – all parents deserve to be supported, to be able to choose the educational method they feel most suitable for their child while we continue to conduct the science that seeks to understand autism better, and to respect and educate autistic people more effectively? What if we could allow autistics in this discussion to tell us what works without feeling like we might be accused of being bad parents for doing one thing or another? It seems to me that we need to bring all of these voices to the table to discuss what we have learned over the last fifty and even the latest fifteen years, and what needs improving. We can't do that if this ABA advocacy group marginalizes everyone who does not agree with their agenda. Parents at the Joy of Autism conference came up to me and said “we needed you thirty years ago.” Why? Why do parents and autistics continue to feel so bullied by these parents? And that’s the word that they consistently use: bullied.

Any party that does not allow another party to come to the table and have a voice, namely, letting autistics speak for themselves and participate productively in advancing autism education, is wrong. Will Margaret Wente understand that aspect to this issue after her unbalanced autism column?

I approached Margaret Wente to cover The Autism Acceptance Project. We sent her our video.We invited her to come and listen to actual autistic people speak about autism. She responded with silence. She certainly had my number.

Margaret Wente didn’t do any fact finding. She didn’t interview one autistic person. She didn’t call the thousands of parents who do not subscribe to the perjorative so-called “autism advocacy.” I was glad to read that Michelle Dawson had blogged about the story when I returned to Toronto today. I am going on CBC tomorrow. Airtime to be announced. In the meantime, you can write a letter to the editor regarding balanced autism reporting and the lack of autistic people contacted at:egreenspon@globeandmail.com

It saddens me everyday to see that the ABA “advocates” want to make this a zero-sum game: either you’re an absolute ABA supporter or you “swim with the dolphins.” It should be extremely frightening to society at large to hear parents call their children useless, or to think that ABA and institutions are the only options for autistic people. It is even sadder when a Globe and Mail reporter doesn’t do her research to either get her facts right, or to get the very important other side of the story from autistic people and the many parents like me who just wants my son to go to school and be allowed to receive the accommodations he requires – whatever they may be at different points throughout his life.

More Positive Autism

I'm about to go away for a few days and may not post to my blog. I find I'm at a loss for words these days, which is a sure sign I need to retreat, be alone, collect my thoughts.

In the meantime, for Toronto viewers, I've posted a little more "positive autism," and I hope that people will figure out that no matter what level of "functioning" we can surely all learn from each other. It's like what Jonathan Lerman says, a man who at ten was still completely mute, who is learning to speak more and more today, going on nineteen years of age: "There's no such word as can't." And you don't have to be a Nobel Laureate either!


Vernon Smith, Nobel Prize Winner & Autistic,

Young Blogger Asks Age Old Question

To cure or not to cure, that is the question. This is a post by a 20 year old David, who decided to take a year off college to persue this project in his blog titled Growing Up With a Disability.He is recording both personal stories and stories of others with disabilities. Here is an excerpt from his post, which is applicable to autism:


My first interviewee, “Ashley,” discussed her perspective on a cure for her learning disability. Ashley said she would only accept a cure if it were on her terms. What society calls rigidity and stubbornness, Ashley calls discipline and focus. From her challenges, Ashley has learned patience and perseverance. She feels aspects of her learning disability have helped her become skilled at math, science, martial arts, and fitness. Ashley wonders if a one-size-fits-all cure of her learning disability could rid her of some of her very best qualities.

Many people who have made valuable contributions in society are thought to have had learning disabilities. Would Leonardo da Vinci, Pablo Picasso, Albert Einstein, and Winston Churchill have wished there had been a cure? What about Jay Leno and Robin Williams? Would these and other people with learning disabilities share the same concerns about a cure as Ashley? Would the unique talents and gifts of these scientific and creative individuals be lost if their disabilities were cured?

I wonder how Franklin Delano Roosevelt would have been a different leader had he not had the perspective and skills learned from dealing with polio. How would Stevie Wonder and Ray Charles be different musicians if they were sighted? How would Beethoven's 9th Symphony be different if he had not lost his hearing?

These are interesting questions to think about. We, as a society, are quick to point out the negatives of a person's disability; with a little effort, strengths can be seen too. Disability is a natural part of human diversity and should be respected and treasured.

Thanks, David!

The New Member of Our Family

  

Meet Kiki, our new puppy...born today...the breeder just sent us a photo of her. Finally, Henry has bitten the bullet and allowed us to get one for Adam. As an only-child myself, I am ecstactic for Adam. I grew up with three dogs (at different points of my life) in my grandparent's home. I took care of them whole summers, saw them every weekend. While I know I will have a new "baby" to take care for the next thirteen years, I cannot be happier.

This makes me think of all that Adam has given me, including the courage to get a dog of our own. I think now of the lines my recent favourite children's book, You Are My I Love You, by Maryann Cusimano:

"I am your favorite book
you are my new lines
I am your night-light
you are my starshine

I am your lullaby
you are my peekaboo

I am your goodnight kiss
you are my I love you."

We Are All People First

A Credo For Suppport (Spoken Version)


An Excerpt of a story written by a father of a Down's Syndrome girl:

[at the birth of their child]"The masked pediatrician finished his sentence. Abruptly, he turned and left the room. Two nurses began to sob. I looked at Jonna. She looked at me.

Thus began our wrenching, happy, challenging, humanizing, angry, crusading, broadening, rejoicing, proud adventure in parenting a child with a developmental disability. Over the past then years, we have learned that there is very little wrong with our daughter. but a great deal wrong with the culture into which she was born.

As for so many other families of children with disabilities, our first experience was in 'medical' enviornment. It took us a while to realize that the 'medical' environment thinks about children with disabilities using a 'medical' model -- a model that teaches parents to think of their child as sick. Subtle and not-so-subtle messages tell parents to do everything they can to make their child more 'normal.'

Several years ago, on the advice of a medical professional, we went to see a specialist who dealt with issues of growth. We were concerned that Elenor was too small, and we wanted to know what we could do to make her taller. In other words we wanted to subject her to growth hormones in an effort to make her look more 'normal.'

What we learned was that she is in the fiftieth percentile for girls her age with Down Syndrome. How much more normal could she be?" --From The Perfect Daughter, by Michael T. Baily, from anthology: You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities.

Autism has been around for hundreds of years. Only since 1943, and then again, not until 1980, did we pay attention to this "new" diagnosis, which is really just a better awareness. Luckily, as more children and adults become identified, we CAN produce better opportunities that understand the learning potential and abilities of every autistic person. Horrifically, society and parents who continue to insist their children are terribly ill, can continue to propulgate the fate that was once bestowed upon people with disabilities in the past: stigma, segregation and stereotyping and worse.

   PHOTO FROM THE DISABILITY MUSEUM: CHRISTMAS IN PURGATORY.


If Dr.Wendy Roberts, the very person some of you stake your cures on says, "we will never find a cure for autism," then we should listen. There is no cure for many differences of the human condition. We must cure society of it's naivite and help our children get the supports and opportunities they deserve. We must invest in learning to understand autism even better than we do today, and we must consider how much society can drive science to appease our desperation.

What Preys on Personhoods

The press incite panic
Pejorative parlance professes improper pedigrees
and peadiatric pandemic of percentages and preseverations
propogates parental paralysis of proper analysis
and instead posits piteous epidemics
that prey on personhoods.


This from The Cornell Daily Sun (thanks, Steve)on the press and science:

Every few years, a press release touts a breakthrough in autism research or treatment. The list of these discredited causes or treatments of autism includes secretin infusion, the MMR vaccine, chelation therapy and facilitated communication. Each of them has given parents false hope, or worse, false guilt. The researchers behind these press releases suffer from the most ethical of motivations: they sincerely believe that their conclusions are sound, they perceive a prejudice of the scientific establishment against these conclusions, and they sense an urgency to communicate their findings to the broadest possible audience of scholars and, more significantly, parents, so as to prevent autism’s ongoing tragedy. This well-motivated urgency often results in circumvention of peer review, the careful process by which scientific findings are vetted and judged worthy of presentation to the broader community. Despite its many faults and delays, peer review remains essential to maintaining public trust in science. Read FULL ARTICLE HERE

Matthew Belmonte is an assistant professor at the Department of Human Development at Cornell University. He can be contacted at mkb4@cornell.edu. Guest Room appears periodically.


Morton Ann Gernsbacher from her article REACHING FOR RELEVANCE:

As we all know, times have changed. Psychological scientists feel the crunch of funding cuts, the burden of congressional accountability, the threat of prioritizing applied over basic research. Therefore, psychological scientists are now reaching for relevance — often, it appears, to the point of gratuity. Nowhere is this more apparent than in recent press releases issued to promote publication of basic scientific research. Consider the following three examples.

Admittedly, I have a dog in this fight – a dog that could well be apparent through all my presidential columns. I am mother to an incredibly wonderful, light-of-my-life, engaging and eccentric autistic son. I am actively involved in several federally funded projects empirically investigating various aspects of autism. I also believe strongly that whenever we, as researchers, write about autistics or Jews or women, we must be cognizant that we are discussing and describing members of our society.

Indeed, I submit that whenever we write for the public, we must be more not less circumspect. We can’t depend on stereotype, a Hollywood movie, or a casual conversation with a colleague to provide us with knowledge of the phenotypes that NIH cares about. Instead, we must research the implication of our findings with the same rigor that we research our basic phenomena. Relevance is a prized commodity these days, but let’s not buy relevance at the cost of scientific inaccuracy and societal stigma.

Here is some of the effects of the stereotyping and stigma that arises from so-called "FACT SHEETS" released by some parents, research news released by press, and unproven and even non peer-reviewed studies by some scientists:


Being an Unperson


And then there is a new blog by a mother, Autism Voice. Ms. Sinclair says this:

In either case, society is telling us how we should feel- happy or unhappy. But in reality, no one else can dictate your feelings, unless you allow it. You truly decide how you feel from moment to moment. You decide if you're going to buy someone else's idea about how you should feel. And yes, you can decide to be happy or unhappy, despite what everyone has told you. You can decide to be happy now, without waiting till your child is recovered. I'm not talking about denial, where you're pushing down feelings and pretending they're not there. I'm actually talking about making the decision to be truly happy.

That doesn't mean that you give up on hoping and trying for more. If you can hope and work for your child's best outcome without making your happiness dependent upon it, and if you fully accept your child as he is now, even with his autism, then your child will feel that acceptance and positive expectation, and will respond by believing in himself.

I don't need to write today. It's been said. When will it sink in?

Joy of Autism Event Opening Photos

As promised, here are a few of the photos from October 5th opening at Lonsdale Gallery of The Joy of Autism: Redefining Abiltiy and Quality of Life. I have yet to get you good installation shots.

  

Larry Bissonnette among incoming crowd.

  

Jonathan and Alan Lerman and Estee Klar-Wolfond

  

Crowd begins to fill The Lonsdale Gallery.

  

More Guests.

  

Guests.

  

Master of Ceremonies: CTV News' Ken Shaw.

  

President of TAAProject Board, Dr. Nehama Baum.

  

Crowd.

  

Crowd.

  

Guests listening to my speech -- notice only my mother is smiling. :)

  

Of course, Jonathan is smiling too -- just before he yelled, "SELF ESTEEM!"

  

Larry "speaks" to the crowd. You do not see the screen upon which his words could also be viewed as they were written.

  

Martine Stonehouse speaks. An autistic board member "in waiting."

  

Michael Moon speaks. He is also an autistic member of the TAAProject Board.

  

Brian Henson speaks. Brian is also an autistic member of the TAAProject Board.

  

Ellen Yack, TAAProject Board Member.

  

Brian among some of his photos.

The Plastic Pumpkin and the Candy Factory

  

This is my Alphabet Boy.

  

Adam handing out some candy to a little devil.

  

The mezmorizing plastic pumpkin!

Halloween Update

Someone suggested that Halloween is an attempt to normalize an autistic child. I agree and don't agree. If you expect your child to be something they don't want to be, then obviously that isn't right. If the expectation is to enjoy each other, to do one's own version of a something, to make "our own Halloween" -- an adapted version, and the child seems to enjoy it, (and as parents and educators we have to constantly evaluate our interpretations of what we even think our children enjoy because it can also be an imposed state), then we can use the opportunity to build an experience. It can be a valuable learning experience for everyone.

Adam enjoyed painting faces on pumpkins -- especially the triangle eyes. He particularly enjoyed these mini pumpkins on sticks and we painted a face on one that he's been carrying around for three days now. He loved his alphabet costume (the alphabet part anyway) as he tried to pluck the letters off his shirt. He enjoyed a couple of little kids coming to our door, and he greeted them with a big smile. He certainly loved his lollipop and then a stroll down the street to watch the rotating ghosts in blown up plastic pumpkins and strobe lights at some of the houses.

It was our Halloween and if Adam didn't want to participate at all, that would be fine. I always think a little sharing is what's important here -- a non autistic mom and her autistic son sharing, compromising. It's what Morton Ann Gernsbacher calls "Reciprocity." He comes out for a walk to view the lights, and I enjoy what he takes in, watch his face and try to learn from him as well. It was an opportunity to do something together.

I don't need him to go door to door for candy. It's just not the point. The point was how we shared the sewing of the letters on his shirt, how we called it a costume, and that he learned about this silly night called Halloween when kids get candy. I like to expose Adam to lots of things. He decides in the end what he likes and doesn't like. It is not normalization. It is just sharing, learning and compromising. The best part for us was not the actual eve, but the night before, when we made something together.