What Remains. An Ode to Paper

Filed Under (To Get To The Other Side) by Estee on 27-10-2009

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I love paper. I am noticing just how much by moving from one house to another. I have boxes and boxes of it. I have old stories. I keep every journal I’ve ever written. I have The Toronto Star of when man first landed on the moon and it’s in perfect shape. I keep reports, notes, love letters and cards. I love flipping through old books of my writing and feeling the weight of the pages with ink on them, not to mention the sound. And let’s not mention the smell of old books!

Speaking of moving, I’ve also kept a series of old computers. Remember those? The ones where I could actually write in the code (MS Dos, Wordperfect)and understand where it was going to take me? I owned a very small computer when I was living in Europe fifteen years ago — the year before I met Adam’s father. I did a lot of writing back then. Now that life has taken another turn, I enjoy going through old pictures, journals and I thought it would be really exciting to look up my old writing on the old computer. If paper and these “artifacts” are all that remains when I am gone, then I feel it is good for the soul while we are living to review where we have been.

Ack.

I can’t get into the thing. I can’t remember the code to the old programs. So I got to thinking — what of all this data stored on blogs, the Internet that we think will never disappear? I can tell you, just fifteen years — ONLY FIFTEEN YEARS — seems like over one hundred. Heck, it might as well be ten thousand years or more — we can dig up old parchment and read cave walls better than we can get into my old Compaq.

What artifacts will be left behind of our thoughts, our writings, our ideals, our achievements if we put them all on computers — the ones that change in time spans of one year, never mind a lifetime?

I love writing on the blog, but I will never ever get rid of paper.

The Musical Brain

Filed Under (Autism and Learning, Joy, The Joy Of Autism) by Estee on 26-10-2009

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Many of us have read Oliver Sack’s Musicophilia and I attended his lecture here in Toronto a couple of years ago when the book was released. Neuroscientists study the innate rhythm of our brains, citing that no other species possess this capability. Apes cannot synchronize if one ape taps a stick. The other apes cannot keep up the rhythm. So this is innate to human beings and perhaps a way we have evolved. Our ability to socialize, to gather as communities have been largely facilitated by this ability.

Young babies can understand musical structure before they understand language. Alzheimer’s patients can remember emotions and early memories, as well as right/wrong notation and words of music even if every other faculty is gone. In other words, music is the last thing, the only thing and neuroscientists are looking at this aspect of our humanity.

For Sting who had an MRI done in order to study aspects of this, when finally looking at images of his brain after it had been evaluated post-testing, he became a bit undone. He said he didn’t want to know the inner workings of what is otherwise a mystical, spiritual experience for him. While interesting, dissecting his musical brain was unnerving.

It is also said that by learning a musical instrument, we may be able to ward off Alzheimers. Similarly, a child will increase their I.Q. by 7% by learning a musical instrument.

Adam is learning to play piano, and like all people, my autistic little boy loves music. He can sing better than he can talk. He tries, although motorically challenged, to keep a dance rhythm with his body, but is otherwise a wonderful drummer. Rhythm, be it through music or rhyme has composed a major aspect of our lives in just basic communication in our home, and I’m lucky because it also comes naturally to me as I have been a singer, have learned many musical instruments in my life (violin, guitar, flute, piano, recorders…). But use it or lose it. I’ve forgotten how to play what used to come so easily, although I can pick up tunes by ear very easily using the piano. We sing “home-made” opera in our house — sort of a daily dialogue in a Bugs Bunny/ Wagnerian way.

Use of music and rhythm is extremely important for any of us to use language, and it is highly effective with non verbal people. It makes me wonder why we don’t discuss and utilize this so much more. We love to make utter fools of ourselves singing our home-made opera in our house — from asking for the juice to brushing our teeth, there is no shortage of home-made songs for every occasion. And even though it is I who makes the major fool of myself the most by doing it, I think Adam enjoys it as he tweets back my silly tunes in his smaller, more cherub voice. I also think if we all did a little more of it, we all might be a bit happier as well. Music does ignite the pleasure centre of our brains.

Specialisterne employs autistics

Filed Under (Inclusion, The Joy Of Autism) by Estee on 24-10-2009

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The Atlantic (November 2009 issue) has featured Thorkil Sonne, CEO and Founder of Specialisterne in the article Brave New Thinkers.

“After his son Lars was diagnosed with autism in the late 1990’s, Sonne had an epiphany. Autistics tend to have poor social skills and difficulty response to stress or changes, which makes finding work a challenge (one study suggests that only 6 per cent of autistic adults have full-time employment). but Sonne realized they also tend to be methodical, possess excellent memories, and show great attention to detail and tolerance for repetition — in other words, the might make excellent software testers. With this in mind, Sonne launched Specialisterne, in Copenhagen, in 2004. Thirty-seven of its 51 employees have autism…The firm now pulls in $2 million a year in revenue and serves clients like Microsoft and CSC. Sonne refuses to run the company like a charity: he competes in the open market and aims to make a profit. This makes government support unlikely, but it may lead to a sustainable new model for companies with disabled employees: Harvard Business School now uses Spepcialisterne as a case study in social-enterprise business. People on the autistic spectrum are not super human memory machines, but neither are they incapable of work. Sonne treats them as employees with strengths and weaknesses that smart employers should respect — and capitalize on.” (The Atlantic, November 2009, p. 68).

I know a lot of business people. Some who are very close to Adam who I hope will take serious consideration of employing autistic people, since software development is also their field. It makes me want to visit Sonne’s facility.

A Response to Prof. Guy Dove on Wendy Lawson’s Book

Filed Under (Acceptance, Activism, Critical Disability Studies, Discrimination, The Joy Of Autism) by Estee on 22-10-2009

I have come across Guy Dove’s review of Wendy Lawson’s Concepts of Normality recently (after being away for a while), and have to defend our positions.

Wendy Lawson’s book is about regarding individuals with autism with respect and dignity and questions our idea of what is “normal” when dealing specifically with autistic people. It is a wonderful thesis based upon how society views “normal.”

Of the “guest author’s” Dinah Murray and myself, Dove states:

The guest authors, on the other hand, seem openly hostile to such parents. Murray sarcastically remarks, “Some Others [members of the typical population] weep and moan and deplore their autistic child’s existence; they wallow in self-pity and congratulate each other on how Truly Dreadful it all is.” This statement illegitimately paints a diverse group of people with a broad brush and seems to be little more than a mean-spirited attempt to silence critics. Klar-Wolfond is not much better. In her discussion of the admittedly questionable practice of using scientifically unsupported biomedical therapies, she offers the following rhetorical question, “And to make them what? — better at maths, quicker on the sports field, or well-mannered?” This is doubly insulting to parents of children who have tried such therapies. First, it belittles their concern. The suggestion is that parents are merely trying to get their children to “act normal” when in fact they are often trying to ameliorate severe challenges with respect to communication and social interaction as well as other difficulties including debilitating anxiety, painful gastrointestinal problems, insomnia, and even violent behavior. Second, it denigrates their reasoning. Many parents who try such therapies agonize over their decision. Although some of these therapies have potentially harmful side effects, most do not. When Klar-Wolfond lumps together treatments as diverse as supplements and detoxification therapies, she is being both misleading and unfair.

To me it is a response not terribly unfamiliar. Dove discounts Dinah’s perspective of being an autistic individual herself and myself as also being a parent who “agonizes” over decisions. It is precisely to that point I think worthy of addressing and why I wrote the piece in the first place.

Parents of autistic children are being eaten. A plethora of information does not constitute proof of what causes autism or what may assist with the symptoms of autism, and even those symptoms may not be a direct cause of autism but autism may cause a more heightened reaction to an ailment. Come to my house when Adam has a cold and instead of a tired child, he may be running around the house.

Yet the rise of speculation has lead many (clinicians and those in the medial profession included, and conversely thanks to the researchers who have endeavoured to provide the real proof to many speculations out there) to sell their products to the risk and danger of the autistic child, feeding upon the desperate worry of parents – and most of the time these parents are new to autism thus more open to trying anything to “helping” their autistic child recover.

I can’t help but chuckle and Dove’s choice of words. “Hostile” is a descriptive word typically ascribed to women who tend to take a critical stance. The hysterical, hostile woman is no more a stereotype than the idea that autistics are less worthy and in need of a cure. Yet Dove, to be fair, is of the mindset, it appears, that these remedies are somehow safe and that parents are only trying to make the best choice. It is here where I think he misses not only the point, but an opportunity to engage in a discussion of how we come to push unproven remedies that risk the safety of our children. The very idea that our children are “not normal,” is the premise for trying to recover them, which is why Dr. Lawson chose the guest author essays for her book. The attempt, by Murray, Lawson and myself, is to identify this preying upon parental worries, not demonizing parents. Yet all of us have to step back and take a close look at what we are putting at risk and why. Further, Dove’s defense of parents instead of the autistic people who are much more vulnerable is sadly typical in our age. It is this stereotype we are challenging and we need to point out the irony of critiquing the view of the autistic person who implores a different view.

Yes, all parents agonize over their decisions. Where is the mechanism by which quackery is separated from scientific proof? As a parent, I can relate to the agony of putting my child on ANY medication (and this is NOT related to his autism but to his overall well being and health). The non acceptance of autism as a way of being, which is precisely Wendy Lawson’s point, has driven many parents to put their children on hundreds of unproven remedies at the same time.

The question is not hostility, Professor Dove. It is a question of having a critical mind precisely when emotions are the driving force behind the autism “hysteria.” For any parent or autistic person willing to engage in this discussion, we are in turn called “hostile?” Have you witnessed the hostility by non autistic parents against autistic individuals who are trying to be seen and heard?

I can tell you as a parent and a friend to many autistic individuals, there is a great deal of agony, indeed. The agony is in pushing them to recover from autism, not recover from stomach pain. Whether the two are linked, no one can really say. The evidence is still very anecdotal. Clearly, that pain should be remedied, but not at the risk of administering hundreds of medicines simultaneously in order that our children can act more “normal.”

I gather being critical is less important than putting our children’s health and safety at unnecessary risk. As for Adam, I couldn’t bear seeing him in pain. Of course I would seek counsel from his doctor and endeavour to remedy his pain. It would be no different if I had a non autistic child. The point is autistic children are being put at much higher risk precisely BECAUSE they are autistic.

To Get To The Other Side

Filed Under (To Get To The Other Side, Writing) by Estee on 21-10-2009

Some of you may or may not have noticed another title under The Joy of Autism. Unfortunately, it’s not looking right (it’ll be corrected soon), but it is the title of my second blog. I am keeping The Joy of Autism, but I’m also planning on spreading my writing wings and goals over the next year.

Chicken coming soon.

Interviews from educational leaders who share ideas on how to make inclusion work

Filed Under (Inclusion, The Joy Of Autism) by Estee on 19-10-2009

We all know the many obstacles to a truly inclusive classroom. First, many educators don’t really understand how to make it all work. There is no understanding of “universal design.” (please cut and paste this link into your browser for a read on Universal Design: http://snow.utoronto.ca/index.php?option=com_content&task=view&id=409&Itemid=380).

While many schools and communities may be unable to argue with the idea of inclusion, and some have begun to include people with disabilities into the classroom, most have not been able to foster an accepting an accommodating environment that would make the classroom truly inclusive.

Well, if we learn to do by doing, we can also learn from others who do. At www.inclusiveeducation.ca, we hear from parents and principals who are making the concept of inclusion a daily practice. This website “features interviews with educational leaders who share their ideas about what it takes to make inclusion work. These interviews are interesting for themselves – but when you look at them all they provide a valuable source of ideas from many school leaders.”

The Alligator King And His Seventh Son

Filed Under (Adam, Autism and Intelligence, Communication, Joy) by Estee on 14-10-2009

Adam had a more verbal day today. I guess that’s normal lingo for a family with an autistic child who has real trouble with verbal communication. One his “more verbal” days, he can get out phrases and sometimes full sentences. He can take his teacher to the closet, grab his lunch bag, put on his velcro shoes and proclaim “go home!” twenty minutes before dismissal. He can come home and reach for his toy alligator from the shelf and then find a smooth concave shell and say to me “crown it.” When I acknowledge that he’s pretending it’s the Alligator King from Sesame Street (yes he can watch the video about 500 times a day if we let him), Adam is very pleased. He crowns his pretend alligator a few times and moves its mouth as if he’s trying to help the toy talk. I pause to wonder what Adam thinks as he manipulates the mouth with no sound.

I imagine all the things he wants to say to me on tougher communication days, and how frustrating it must feel. I imagine all the questions he has to ask his parents regarding their recent separation that cannot yet ask, though I am clever enough to know that he thinks them and I have to behave as if to answer them all for my behaviour sets the tone for everything. I have seen and known enough to witness that he can follow every instruction and he understands more than he can express. In the movie Awakenings, Dr. Sayer asks the mother how she knows what her catatonic son is saying. She replies, “You’re not a mother. A mother knows.” It is true in my home as well. For seven years every sound, every move, every expression and I just know. Sometimes I have to be careful to listen because I actually may be paying more attention to all those other subtle behaviours instead of that speech he tries so hard to get out. I suppose my actions also speak louder than words as they model for Adam and they may have become just as important as facund explanations. Perhaps if we were observed carefully as a unit, others would see this daily orchestration that we have come to take for granted as much as those who speak take what they say for granted. In our house, the saying “actions speak louder than words,” cannot more more true.

Adam also has many abilities in helping out mom and dad, for he loves us both so much. I think it’s just one of his very precious gifts to us, and that he gives to others (although mom and dad are in that exclusive category). I know that Adam is a wonderful, loving boy who will give this gift to many during his life and I know he will bestow the new people in his life with that blessing. I guess, in a very special way, he is a lot like the king’s seventh son. In my opinion, he deserves my crown, and I hope he won’t mind the dents.

You know when you’re happy when….

Filed Under (Acceptance, Activism, Joy) by Estee on 13-10-2009

There are a few good lines mulling about out there. I particularly like “you know when you’re happy when you are no longer looking for happiness.”  Ever notice that when you’re happy, you didn’t really notice at all? It was sort of, well, effortless?

In this autism world, or any matter of the human spirit, we are really involved with the meaning of things and what will bring us joy and happiness.  Every time we write our lists and ponder our life’s purpose, we can feel overwhelmed. While I’m certainly for lists, I think they are simply like little messages we have to write, put out there and then tuck in the wall. Once the intent is made, then leave it, move on and begin the work. While intention is how we wish to live our lives everything else can happen. And it will.

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As I’m re-reading Viktor Frankl’s Man’s Search for Meaning this week, I’m reminded of some very important things. First, is that like the name of this blog and it’s consecutive mantra about “struggle,” I suppose I was also brought up with the idea that struggle will always be a part of my life and that happiness happens when we aren’t paying attention. It can even happen during the most catastrophic of circumstances. Frankl had cited Nietzsche’s ideas that we all have to have a “why” in life to get us through. He said if we have a “why” then we will certainly have a “how.” For those in the concentration camps during the Holocaust, Frankl of course ponders the meaning of life during one of times most horrible of human travesties.

Frankl understands life’s inherent blessings among tragedy. He sees goodness in the group that has done him harm: “Human kindness can be found in all groups, even those which as a whole it would be easy to condemn. The boundaries between groups overlapped and we must not try to simplify matters by saying that these men were angels and those were devils.” He refers specifically to the Germans and notes that groupings of “good” and “bad,” does not fully explain or accept the expanse of humanity. For when one condemns one group, they are also denying that they are also capable of the same atrocity, for we are all made equal. Once we are able to understand that we all carry the same capabilities of good and evil within us, we can become compassionate. The modern saying is “for every finger we point, there are three pointing back.”

Perhaps it would serve us all well to practice a little reflection when we debate the “rights” and “wrongs” in autism politics. It would serve us well in every aspect of our lives. Some of us in this world hold on so firmly to our beliefs that we don’t see many other realities.

Musician John Mayer writes:

Belief is a beautiful armor
But makes for the heaviest sword
Like punching under water
You never can hit who you’re trying for

Some need the exhibition
And some have to know they tried
It’s the chemical weapon
For the war that’s raging on inside

Everyone believes
From emptiness to everything
Everyone believes
And no one’s going quietly

There’s a lot of autism “belief” out there and it’s important to have science to assist us in proving many things. Also, it’s important to know. To know that my son, without proof, is a worthy, valuable, lovely human being who has made contributions in ways he is too young to understand.  It sometimes disturbs me that as much as science is important to prove harmful beliefs incorrect, it is similarly exhausting to have to prove one’s value through scientific or any other means.

In this world of human difference, belief, disability I would like to take a moment to defer to Frankl who says,

” What [is] needed [is] a fundamental change in our attitude toward life. We had to learn ourselves, and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead think of ourselves as those were were being questioned by life — daily and hourly. Our answer must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual… and each differs from man to man….When a man finds it his destiny to suffer, he will have to accept his suffering as his task.” (Simon and Schuster edition, 1963, pp. 122-23).

And so perhaps it is not really worth our time to discuss what makes us happy and brings us joy as much as it is to accept the responsibilities and events that enter our lives, and move on with them with an open and willing heart. Hmm, just that simple thought makes me happy.

Follow Thy Heart

Filed Under (Uncategorized) by Estee on 11-10-2009

I’m sure I’m not the only one on a weekend checking in with so many old friends on Facebook. And I’ve made new ones too through my work in autism and writing. And so I feel a bit of like a divorced cliche — I’m checking in with my past to re-discover who I am. Please don’t blame me — it’s kind of like my marathon running these days — no matter what we do when we get divorced, pretty much everything we do becomes a cliche. Heck, we just can’t help ourselves! I just prefer to go at it with a bit of humour, but also a positive outlook. There is a reason why we have to run marathons and cross new finish lines.

Don’t get me wrong, all this talk on grieving and looking back, you’d think I was still sad or something.  I’m not other than what’s beyond the usual healing process. I’m simply moving on, very philosophical and looking at where I’ve been and thinking of where I’m going, now, with my little guy.  These posts since I’ve archived the older Joy of Autism blog (see side margin) are much about growth and moving on. It’s why I’ll be starting a second blog in this site soon — so I can keep the focus on autism for those of you who just want to read about that, and then another blog which is just more of what I love to do, which is to write about pretty much everything.

Facebook has been a great tool for advancing The Autism Acceptance Project (I’m also working on changing this site), and keeping in touch. I’ve actually had a real-life, face-to-face conversation with some of my old friends who have reconnected with me through Facebook. Imagine that? Coming out from behind the screen!

As long as the tool enables communication but also connection beyond the screen, I like it, but I admit to “checking in” with people on Facebook and Twitter just to feel connected.  My blackberry just went down today, and I can imagine how many messages I am missing!! I’m not connected!  A girlfriend actually CALLED me yesterday (remember that old fashioned telephone thing?) instead of emailing me, ON PURPOSE. Some of us are recognizing that it’s pretty important to hear that other voice on the end of the line.  But for every complaint, there is a blessing. Mine is reconnecting with old friends where the phonebook became out-of-date and Canada411 couldn’t find them for their changed names.

One of my high school girlfriends sent me these today ON FACEBOOK…more photos of the Estee-gone-by… as Hodel from Fiddler on The Roof (might that have been a prediction of Catholic girl turning into stubborn Jewish girl?) and Ethel Tofflemeyer in The Music Man. These were classic high school days where I spent nearly all my days rehearsing and performing. It was my real passion back in the day and where the enduring friendships were made.  And I look at that really young girl and realize that she was whole back then and she didn’t know it. She knew what she wanted and she went for it, even though she thought she wanted more. Before boyfriends and husbands, she did what she really wanted to do.

And today, it is the girl I admire the most and the fondest of all my memories, with the exception of Adam’s birth.  The girl who makes me remember what’s really important for her.  When I look at Adam, and even many adults, I also remember just how precious a young heart is. It also reminds me to encourage Adam to follow his own heart. There is a reason, I suppose, for having memories.

As Hodel in Fiddler on the Roof -- the train station scene where a stubborn daughter leaves her loving father to do what she has to do. She has to break with tradition!

As Hodel in Fiddler on the Roof -- the train station scene where a stubborn daughter leaves her loving father to do what she has to do. She has to break with tradition!

Lisa, my friend who sent me this ol' pics front and centre. I'm on left in The Music Man.

Lisa, my friend who sent me this ol' pics front and centre. I'm on left in The Music Man.



Michel, an old band-mate front and centre. I am in background on right.

Michel, an old band-mate front and centre. I am in background on right.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.