This is Our Halloween

Filed Under (Acceptance, Accessibility, Adam, Autistic Self Advocacy, Communication, Development, Family, Holidays, Joy, The Joy Of Autism) by Estee on 31-10-2014

_DK00868

We got up a little earlier today to rush to get Adam’s makeup on for Halloween here in Toronto. Adam decided to be a happy bear, so we came up with Happy Panda – it’s also a story about mindfulness that we sometimes read. It just feels right to show a happy little autistic guy, a preteen no less, who types to talk and gets excited like every other kid about Halloween. Adam is part of the whole process in deciding what he wants to be. Since Adam started typing at the age of 4, and is now 12, he has become more able to self-advocate and tell us a lot of what it is like to be Adam.

Here he is (below) inspecting my make up job… I must admit I wasn’t sure if he liked it when it was all done… and I didn’t have time to discuss it with him as we were rushing out the door. But he seems to be thinking about it here:

_DK00883

Alas, in this next shot, Adam is a Happy Panda posing for the camera. Today at his (inclusive) school he will go trick and treating around to each classroom. It’s raining in Toronto, so it is unlikely he will go out tonight with his dad… I’ll miss Halloween with Adam this year. It’s the first year ever I’ll miss it with him.

_DK00885

I hope all autistic families will enjoy their Halloweens if they want to. I never believe in forcing our kids to do things that are expected, but at the same time, I also believe in inclusion and participation in ways that the kids can and want to participate. I always tried not to expect too much when Adam was little. We stayed in one Halloween when he preferred to hand out candies rather than going door-to-door. That remains a really fond memory because Adam chose to do this and he enjoyed it so much. Before he could self-advocate with words, I gave Adam an array of choices, making costumes that reflected his interests. Since Adam was deemed hyperlexic and loved numbers and letters, I stitched letters and numbers to his clothes and named him “Alphabet Boy” – indeed my kind of superhero. This year, it helps a lot in all activities to make up our own social stories so that Adam knows what is expected, and I have him participate in writing them by making choices before decisions are made. This can involve all the steps that are made from ringing a door bell to what to say, to how many doors Adam can knock on so he feels a little more secure about how the evening is constructed. It’s also part of why I like the process of making Halloween costumes (although I’m not that talented at it, I still enjoy it) because it gets him involved and a chance to anticipate and be a part of any given event.

Two years ago, he wanted to be a ghost, and we managed to make together a Tim Burtonesque version… he loved that one; in fact I think he’s channeling Tim Burton again this year! Here’s a photo of that costume:

_DX07863

And another year, he fell in love with a cowboy costume from the store – he wore that one two years in a row:

photo

It’s been a joy to watch Adam grow and develop over the years. Having an autistic child is wonderful to me, the challenges included as they have encouraged me to think outside of the box. Let’s all make our Halloweens what we want or need them to be, and find our contentment with that!

_DX07915

How I Deal

Filed Under (Ableism, Acceptance, Anxiety, autism, Estee, Joy, NEugenics, Parenting, The Joy Of Autism) by Estee on 10-06-2013

So I’ve just put Adam to bed. We’ve had another challenging month – a major basement flood ruined his space where he jumps on a trampoline and has his OT equipment. It’s his space where he is king. It’s our second flood, but this one was much worse…expensive damage and more importantly, it had to be totally ripped apart. The same week, Adam suffered the viral croup that’s been going around up here. Unable to move for a week, he hardly ate and broke out into frequent sweats. Unable to explain the way he feels in detail, or to have the energy to “type it out” as I say, I panicked and took him to the doctor three times to make sure he was going to be okay. In the middle of it all, my walls were being ripped out and fans and humidifiers hummed so loudly that it was difficult to feel at home let alone relax.

Then, Adam returned to school on Monday and started biting his wrists and arms. It hasn’t abated yet – he’s frustrated when his preferred activities are ending, he’s starting puberty and my great little guy is on the anxious side to begin with. He has all the difficulties with transition and arousal as expressed by other autistic adults. It’s very difficult to write about Adam in this way, but these challenges are inevitable in life. My mother confided in me that she used to bite her friends (she won’t mind me writing about it now) because she was frustrated and angry. I expect Adam is a bit frustrated and angry too – his ripped up space, his sickness that has kept him immobile and now having to return to demands not to mention the need to express the free will of becoming an older boy. The way I deal (despite my own stress) is to bring back routine, use visual supports, gestures, counting, less words, gentle affect. In the midst of chaos, this is one thing I know to do. I also have a routine, it seems, when I’m overloaded. I get stressed out and then realize its time to shut everything down, off and focus on calm and Adam. Then, as I do, continue to support Adam’s development and learning to cope with new experiences and on patience with the things that don’t work out as planned.

I had two other thoughts this evening when I considered writing about challenges, which I am wary of doing for all the twists and turns I see stories take for some people’s own self-interest. First, I recommend everyone to read Val William’s book, Disability and Discourse: Analysing Inclusive Conversation with People with Intellectual Disabilities. Using a conversational analysis between disabled and non-disabled support workers, she analyses the subtleties of our conversations, intonations and expectations against our desire to support autonomy and how we may in fact silence and disable it, as well as examples of how it can be enabled in people with severe communication disabilities, which is my area of special interest. I was considering how I might disempower Adam’s free will and autonomy by analysing my own behaviour as his parent in how I talk to him, what my expectations are, how I may garner an answer from him. I asked myself if I praise him because he has answered in a way I expected, or made a choice I preferred. Then I asked myself (and am more aware of this now he is entering puberty) how often do I praise the choices he makes that I might dislike or are inconvenient for me? How can I encourage and support his autonomy if I only praise what I think is acceptable? These are the reflexive questions and sometimes, fine lines.

Then, I came across two recent books that mention my name and work. The first is by Michael Prince and Bruce Doern, Three Bio Realms: Biotechnology and the Governance of Food, Health and Life in Canada. I have quoted Prince especially from his book Absent Citizens: Disability Politics and Policy in Canada. In Three Bio Realms he states:

“Bio-life technologies are especially susceptible to both the ‘wow’ and the ‘woah’ reactions and instincts. In this case, the ‘wow’ factor came in the announcement itself and press coverage of it. An immediate letter to the editor of The Globe and Mail newspaper expressed the ‘woah’ reaction in intensely human ways. The letter came from Estee Klar, who signed her letter as the founder of the Autism Acceptance Project (Klar, 2010). Her letter expressed the views of the mother of an autistic child reacting to the announcement about genetics and autism. She wrote ‘the lack of public awareness about autistic pride and the many autistic adults who have helped our understanding of what it means to be ‘different.’ She expressed deep concern about language that might cast persons with autism as having fouled-up genes. Klar concluded by stating that autistic people ‘are more than their genes’ and that like non-autistic people, are shaped by [their] environment, supportive families, good education and so forth. (Klar, 2010 in Doern and Prince, 2013, 198).”

I was surprised to see this disability scholar refer to autism as a “disease” because the reality is, there is no known etiology of autism. While there are other issues that confront many different individuals with the label, the term itself is too broad and deterministic regarding autistic being and identity. I also think it prudent to cite the woah factor in a society that searches for a panacea – from pills to technology to gene-causation – in the pursuit of a (perfect) ability that I think will still experience or may create new disabilities. The way we parse humans as (dis)abled repeats self-evident ableism.

And then I came across this book Bad Animals by Joel Yanofsky who says,

“I’m recounting the highlights of a telelphone interview I just had with Estee Klar. She’s a Toronto writer and curator I learned about when I read her heartfelt essay ‘The Perfect Child.’ It’s about her son Adam whose on the spectrum. Not long after Adam was diagnosed, she started TAAP or The Autism Acceptance Project. TAAP’s mission is ‘to bring about a different and positive view about autism to the public in order to raise tolerance and acceptance in the community.’ She also started blogging about her life and about autism, which she says on her website, is not about illness but a way of being. Even so, Klar is hardly starry-eyed. She knows first hand how tough dealing with autism is. She also knows that if she were to accept all the doom and gloom heaped on her over the years she’d be incapable of doing anything, including what she believes is best for her son. Currently, Klar’s blog reaches some two hundred and fifty thousand readers.”

I do think that many of us need to write-it-out, visit meet-up groups, talk it out, type-it-out despite some days I think I should just delete everything and walk away. For myself, I’m not a great writer but I just keep doing it. I have a compulsion and I guess it is a way I can deal, and if it helps you too to read it, then I’m glad for that. I am grateful that Yanofsky in that at least he highlighted that I am hardly “starry-eyed.” I guess despite the fact I can get very down just like anyone else, I am also determined to see that sun rise and know there are always many delightful days, and I don’t believe in simple answers and a final cure. I don’t believe in easy paths and the “pursuit of happiness” – when we think it is something to obtain and possess, it simply makes us more miserable. It’s like expectation – when we hold on to it, we will be disappointed. We can’t hang on to anything (obviously not a soothing statement for people who need regularity and routine). So why am I thinking about these two quotes about the way I think about autism and my life tonight? Well, if anything is final, my concern is the finality of the existence of people we deem not worthy to live because they do not fit an economic paradigm and who are considered burdens on society. The thrust of my work today deals with this and how we can support autistic people, and to reconsider how we view autonomy and independence as yet another path to normality (and oppression). Normal doesn’t exist and it never will for many of us, and for most, it is a mere delusion. Hmmm…delusion. A way to survive the ultimate reality? Think about it.

A Letter from Lewis Carroll

Filed Under (The Joy Of Autism, To Get To The Other Side) by Estee on 22-03-2010

images On Saturday I saw the adaptation of Lewis Carroll’s Alice in Wonderland in an attempt to catch up on all of those wonderful movies out there. I wrote about Carroll and his autism here. I have come home to receive a “love letter” from my son and then to coincidentally read a love letter by Carroll. To his Gertrude he wrote:

“My Dearest Gertrude,

You will be sorry and surprised and puzzled to hear what a queer illness I have had ever since you went. I sent for the doctor and said, ‘Give me some medicine, for I’m tired.’

He said, ‘Nonsense’ and stuff. You don’t want medicine. Go to bed!’

I said, ‘No, it isn’t the sort of tiredness that wants bed. I’m tired in the face.’

He looked a little grave, and said, ‘Oh, it’s your nose that’s tired: a person often talks too much when he thinks he knows a great deal.’

I said, ‘No, isn’t in the nose.’ Perhaps it’s the hair.’

Then he looked rather grave and said, ‘Now I understand: you’ve been playing too many hairs on the pianoforte.’

‘No indeed I haven’t,’ I said, ‘ and it isn’t exactly the hair: it’s more about the nose and the chin.’

Then he looked a good deal graver, and said, ‘Have you been walking much on your chin lately?’

I said, ‘No.’

‘Well,’ he said, ‘it puzzles me very much. Do you think it’s the lips?’

‘Of course,’ I said. That’s exactly what it is!’

Then he looked very grave, indeed, and said, ‘I think you must have been giving too many kisses.’

‘Well, I said, ‘I did give one kiss to baby child, a little friend of mine.’

‘Think again,’ he said. ‘Are you sure it was only one?’

I thought again and said, ‘Perhaps it was eleven times.’

Then the doctor said, ‘You must not give her any more till your lips are quite rested again.’

‘But what am I to do?’ I said, ‘Because you see, I owe her a hundred and eighty-two more.’ Then he looked so grave that tears ran down his cheeks and he said, ‘You may send them to her in a box.’

Then I remembered a little box that I once bought at Dover and thought I would someday give it to some little girl or other. So I have packed them all in it very carefully. Tell me if they come safe or if they are lost on the way.’

Lewis Carroll”

What a fantastic letter! I have not received any such boxes for my birthday this year, but I have received a kiss from another little autie I know. And I may still receive a few hundred more.

Reference:

Love Letters from Great Men, Edited by Stacie Van Der Pol, Pacific Publishing Studio, 2009 (pp.13-14).

Change

Filed Under (Acceptance, The Joy Of Autism, To Get To The Other Side) by Estee on 04-11-2009

LongestBrigde-hangzhou2I’m changing the name of this blog and bidding farewell to The Joy of Autism. I ran that blog since 2005 and when things changed last year, I felt that my blog had to change with me. As I’ve written above, I’ve got good reason “To Get To The Other Side.” In a minute, a spouse can leave, a child can disappear from their school, another innocent can be robbed of their life too soon. Sadly, there are many tragic stories out there, and it’s important to keep on going.

I don’t believe that all change is for the better, but I believe in inevitable change. I know that we cannot control the child who is born to us, we cannot pick the day we are going to die, and we do not hope for love to leave us. Yet we can control how we deal with our own circumstances and ourselves. We can make our lives better by how we choose to respond to change.

Since before the beginning of The Joy of Autism blog in 2005, I chose to accept autism, not fight it. I chose to accept Adam, not necessarily all the views and therapists who said that he had to change in order to be better — who called his “stims” abnormal and bad and used what I consider difficult, judgmental language and behaviour towards him. Everyday, even though many other voices and opinions are out there, and I hear them, I make a daily choice. And I believe the choice is a healthy one for myself, Adam and the rest of his family.

No, it’s not easy now that I am a single mom for all kinds of reasons. One main reason is that I am human and I fall into that well of fret every now and again that cannot be put at quick ease with the help of a partner — will Adam be able to advocate for himself regularly by device, by speech? Will he be able to tell me if someone bullies him at school, or God forbid, something worse? If I stay strong, can he? Will that be enough? It may become somewhat gratifying in knowing that I have stood up to my fears all on my own, and maybe even a self-delusion that I have not even while in partnership. All I can say is that Nietsche’s “Was mich nicht bringt, macht mich starker, [sorry, no umlaut in this blogger]” famous line better be right. What I know for sure is that Adam keeps me strong enough.

In the spirit of the Eagles song In A New York Minute (see below), I am appreciative for what I have today and know that change will inevitably come again tomorrow. I’m so appreciative to the life that The Joy of Autism took on, the people it brought to Adam and I, and what I learned by doing it which is why it was hard to let it go. If you remember, it reached a wide readership when it was on Blogger, and for unfortunate reasons, it was suddenly taken down and I rebuilt the blog on this site. It has never been the same since.

I will continue to write about autism as we live it, and hopefully will do so more skillfully as a writer who wishes to improve her punch at the craft. Also important, I hope, I’ll be writing about writing as I work on my book, which may be the most exciting part (and probably the most insane) for me. I started it when Adam was two years old and I have not yet finished it. “The events in our lives have no inherent meaning,” says Debbie Ford. “We are the narrators and the ones who give them meaning.” I figure I have a compulsion to write (since grade five) and to give everything in my life meaning (since grade five).

I hope to have some new kind of fun and make some new discoveries along my journey of getting to that “other side,” where-ever that may be on December 31st, 2010. I also like to think that perhaps you, dear and generous reader, may find some of what I have to share a little useful (and entertaining) as I attempt to broaden the view and, gulp, do what I have always wanted to do.

So, farewell to The Joy of Autism blog. No matter “the best of times and the worst of times,” for that’s the given. The joy can remain in the journey.

The Musical Brain

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

images

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

Tagged Under :

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.

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.”

ads
ads
ads
ads

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.