Estée KlarThe Joy Of Autism

If “to be a writer is to violate a trust” – be it in friendship or with family, then, says Claudia Mills, “a writer must be ready to violate it.” (Friendship, Fiction and Memoir: Trust and Betrayal in Writing From One’s Own Life, The Ethics of Life Writing, Edited by Paul John Eakin, pp.101-120).

I must admit, as a newly separated person and a mother of an exceptional child who is growing older by the minute, I’ve been terrified of writing about the nitty gritty details of my, and my family’s personal life. Let me be honest here, for the purpose of life-writing is to tell the truth; I’ve considered what to tell and how to tell it. Now that many lives are important in an of themselves, and also fodder for my writing, I’ve hesitated. And for good reason.

I’ve started a series of posts about writing about children. Many of us who read these blogs are also writers. Many readers are also parents of autistic children. There is obviously a reason why we read each other’s work. Be it at the local café or online, in order to share our stories, we have to tell them. What benefit does this bring? In order to begin writing, I’ve had to consider the following questions:

1.    What does writing about our children give us?
2.    When is “telling the truth” too much telling?

3.    Why do we become uncomfortable with writing about our lives?

4.    Why is the cost/benefit of life-writing?

5.    Do we appropriate or impose an identity upon our children when we write about them and they later      read about themselves?

5.    Why do we tell stories?

6.    How and what kind of life-writing has contributed to positive change and,
7.    Is life-writing necessary?

I think the first question, “what does writing about our children give us? Is worthy of dialogue here on this blog.

In 2005, my then husband encouraged me to start my blog. Already a writer, he thought that I would flourish by using this kind of an outlet. And he was right. I haven’t stopped writing about autism and my life since. I had already been writing a book about autism for two years prior to even starting the blog. While Adam was in therapy sessions or at nursery school, I would grab my two or three hours, study-up on autism and then writing about our experiences with the new frontier of therapists was an outlet for me. It enabled me to express my discontent for how a system was set for autistic children. It fuelled my impulse to work to have Adam treated as a person, not a client – to be viewed in all his human glory instead of a person with impairments and deifiencies who had to be made better than he already was. For Adam was my joy. He remains so. I still feel that the best thing I ever did in my life was give birth to him.

So in effect, writing for me became a way of finding myself in a mirage of “suffering.” According to the experts, I had to be suffering. I certainly was, but not because of Adam. I believe I was suffering with the disconnect between how I felt about Adam and how others tried to influence me in the way I ought to feel about him. If it hadn’t been for writing through the process, I may not reached the level of clarity I’ve reached today. I’ve made new friends and alienated other people with my determined stance not to succumb to misery and pity regarding autism. The stories I told between 2005-2008 were extremely important for me to write. I needed to respond to how others responded to Adam and to us. As Victor Frankl said in Man’s Search for Meaning, suffering becomes more bearable when it has some meaning. We can only derive meaning when we tell our stories.

As for my readers, I’ve received many emails tha the reason why people read my blog is because they relate to my viewpoint and they do not feel alone. Feeling as if we are “not the only ones” is an important part of writing and reading. Others have expressed that they too are frustrated in a system of dooms-dayers regarding disabled children. While we have many challenges, most of the people who write to me are united in feeling that there is more to life than just complaining and that we are determined to live good lives no matter if others say we must live otherwise. Are we nonetheless united in challenges? Most certainly. I believe the craft of writing with compassion, as I’ve lived and learned about disability and many views over the past five years has helped me to realize that we can align ourselves with other’s experiences even if we also disagree. In other words, while I may not enjoy Dr. Phil’s renditions of families and disability (in fact, his sensationalism makes me cringe), I can also relate to the challenge that families have when they have special needs children.

I suppose I also write when I get this kind of feedback. As a writer or an artist, or any contributor to the world, the most important aspect of creating art, or in telling our stories is in the sharing and continued dialogue that writing and sharing promotes.

What does writing, or reading, of life-stories give you? Please contribute to the discussion in the comments section.

Next Post: Question Number 2.

I’m leaving my theme of writing about children for a moment to disseminate today’s article in The Globe and Mail here.

It defintely makes a lot of sense to us as Adam has learned to play piano using visuals and patterns. He just had his first recital last week and beamed with “hey, that applause is for me?” kind-of-pride that just swells and oozes with, well….joy.

The Ethics of Writing About Our Children — Part One

I’ve reached the tipping point. I no longer wish to write specifically about Adam or autism in particular because there are many other things to write about. In 1995, my husband eagerly encouraged me to start this blog and he egged me on, being my most ardent supporter and editor. It was really nice to have that kind of moral support. But now he has left and not for this reason but a general evolution have I reached a new dilemma well worth talking about.

Admittedly, for quite some time now, I’ve been uneasy with publishing his words, his accomplishments, or sharing details about Adam.  Yet it all seemed for a good cause. In pursuit of attempting to erase stigma about autism and advance opportunities for both Adam and other autistic people, I wanted to be able to tell our story from an atypical point of view. I do not think the motives were (and are still not) at all wrong. I am simply reconsidering the manner in which we write about our autistic children and how we write from the time we receive that initial diagnosis to later on in life when we have all evolved. Perhaps the manner in which we write and expose ourselves has as much to do with the manner in which autism is negatively portrayed in the media and the way we feel that the “stare” (of the disabled in our society, not to mention children) is our fundamental right.

Last week, I had posted a photo of my beautiful boy sucking on a lemon. After I had posted it, there was a corresponding sour feeling in my stomach. Something had indeed changed. While I still believe that writing memoir has a real purpose and that meaningful writing on the topic of how must be true, I needed to take the photo down. It was not because of any particular pressure (save for another ignorant comment by John Best which my son does need to be protected from – any adult who comments on a child should be banned from blogging all together in my opinion), but mostly because Adam is now of the age of self-pride and achievement. He has forged his own life and he is becoming separate from me.

This happened from the day he was born, of course. I was not just a mom gushing over her beautiful new baby. I was a mom gushing with new and exciting experience. When Adam was diagnosed with autism at the age of eighteen months, the proliferation of autobiographies and parent memoirs was overwhelming. My response was to participate in the dialogue, in my case, hoping to align more with the introspections and observations of autistic people themselves and to illustrate how I was growing as a mother understanding her autistic son.

Other authors were doing it too. I noticed the ones who were “tell-all,” stopping at nothing to protect the privacy of their autistic children, to those who were also more careful and contemplative about the need to tell an important story, what contribution that could make to the service of social justice in a world that struggles to accept those who are different.  When I first read Ralph Savarese’s book Reasonable People: A Memoir of Autism and Adoption, the tension between writing about his son D.J. or not was evident in his entire introduction. Not only does he ask the question about risking his family’s privacy, but Ralph also touches upon the notion between our autistic children and their sudden thrust into general public scrutiny by government programs, educators, testing and the like.

“…a key question remains,” writes Ralph. “Having taken such precautions with strangers, is it reasonable to invade my son’s privacy without changing his name and, thus, obviously my own and Emily’s as well? I’ve agonized over this question, believing in the end that the story of D.J.’s emergence ultimately outweighs these concerns and, as well, that writing under a pseudonym would both undermine what is irrefutably factual – namely, his emergence – and inhibit the work of activism I wish this book and its author to perform, however modestly…” (introduction).

Michael Berube in his book Life As We Know It,  eruditely discusses the dilemma of the private versus the public when our children are diagnosed with a disability. In reading his work, one can’t help understanding the “if you can’t beat ‘em, join ‘em,” phenonmena. This, I believe, is the simplest way of describing my own personal motivations for writing about autism as a response to the negative, stigmatizing, dreary way of viewing, publicizing, representing and treating disability in our culture. In my view, it is a response to a way of looking and an ignorance of how we look at things and why.

And yet, I hold my son in the highest regard. Not for the purposes of exploitation of a simple idea – that life can simply be a trite kind of  “joyful.” Such a simple description is to me another kind of exploitation, one I’ve been wrongfully accused of — in other words,  a denial of the problems, challenges and ethical dilemmas we experience on a daily basis. In writing specifically about Adam, I struggle daily with preserving his privacy and dignity, and in an Internet Age, where we are becoming aware of what evil lurks about out there, I am concerned for his safety. Such a discussion on the ethics of writing about our children as parents and the role we play, or do not play, is what I will attempt to discuss over the next couple of weeks.

In a writer’s workshop I attended a few years back, I felt certain permission when Asian-Canadian writer Wason Choy addressed the writing of memoir and family as “they know you are a writer,” so in other words, caution to them!! The proliferation of memoirs and workshops and general popularity is on the upswing. People love reading about people. We love to know that we are not the only ones out there. Yet Adam brings about a different kind of responsibility and questioning in me.

In the United Nations on the Rights of the Child, which I reviewed again today, Article 16 states, “No child shall be subjugated to the arbitrary or unlawful interference in his or her privacy, family, home or correspondence, nor to unlawful attacks on his or her reputation.”

The other week, I had quoted Gloria Steinem who wrote, “Most writers write to say something about other people  – and it doesn’t last. Good writers write to find out about themselves — and it lasts forever.”  As such, I’ve been deliberating on the content of my writing as an autism mom, divorced woman, a woman in general and the like. Where is the line between what I write as my own experience and how others are involved in my perspectives of that experience?

In The Ethics of Life Writing by Paul John Eakin, the author quotes Janet Malcom who writes, “ as everyone knows who has ever heard a piece of gossip, we do not ‘own’ the facts of our lives at all. The ownership passes out of our hands at birth, at the moment we are first observed….the concept of privacy is a sort of screen to hide the fact that almost  none is possible in a social universe.”

So perhaps the best we can do is remain analytical about the way in which we observe and represent. Alice Wexler, in her essay ‘Mapping Lives: Truth, Life Writing and DNA,’ discussed Huntington’s disease, which affected her family, and how it functioned as “a textbook stigma for proponents of the US Eugenics Movement in the early 20th century.” (Eakin). “Wexler’s polemical purpose in her memoir was ‘to show one such family, my own, from the inside, rather than as viewed through a clinical or eugenic lens.’” (Eakin, p. 11).

In the coming week, I’ll begin to look at some of the autism memoirs written by parents and continue the discussion of what may or may not be exploitative writing (even if it “positively represents” autism), or writing that continues to explore the tension and the ethical dilemmas of how we represent autism in writing.

“…recognizing that life writing in an age of DNA carries risks, Wexler,” writes Eakin, “acknowledges that the revelation of genetic identity can trigger grave social and medical consequences, including the loss of jobs and insurance. Allegiances to privacy and truth….prove to be in tension; neither stands alone, reminding us that the goods and harms in life come extricably intertwined.” (Intro).

It’s summer time in the city and Adam and I are outside! After long months of cold winter days, we are re-discovering Toronto. Some call it the “stay-vacation.” Economic downturns and people have to fend for themselves. And it’s a good thing for community-building too. We are discovering that Torontonians are a nice bunch of folks.

By having this new-found fun, I’m having severe email anxiety. I have a Blackberry, an email address “attached” to my computer separate of my blackberry, I belong to other blogs and groups. The land-line hardly rings anymore and if it does, it’s probably just someone asking for money. My Blackberry has become an indispensable tool for “keeping connected,” with my friends…”how are you?” “need anything,” and wanna have lunch,” stuff. Should we have the fortunate chance to have room in our schedules to squeeze in a lunch, we just might get connected in a way that most of us so long for.

While e-communities can be interesting, getting out more often makes me want to chuck it all. If it weren’t for Adam and being available for him during the day, I would not have a Blackberry — I think I’d just make more calls. I’m, to be frank, fed up with it all. One email address would suffice — one I could check once a day. Me, the text-queen has had enough. Time to throw out (wait, aren’t we doing too much of that?) the e-waste and have some conversation.

Which is why I wonder why I’m here to tell this little thought-of-the-day on my blog except that I’m a compulsive writer (if not in my notebooks, my sketches of thoughts may turn up here).

Me, a writer and reader with my head down so enjoys looking up. There’s too much life to live, especially in the summers. With Toronto festivals in full swing, like Luminato, there’s too much dancing to do! Adam seems to be enjoying it too:

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Virginia Woolf wrote much on the homes where she lived and the homes she wanted. Her husband enabled it too — if she wanted a place, he would move with her and she would write extensively about the house and its spirit and how she lived (or wanted to live) within its walls.

Adam has moved once. As my husband and I were building the house where we now live, I introduced the house to Adam slowly. I took him on the day we tore down the old building that once sat on the land where this new structure we build stands. I took Adam when tractors were about, nails being hammered. I brought Adam for three years before we finally moved in, the final few introductory days playing ball on the floor as the final touches were being made.

Yet saying goodbye to the older rickety house we had lived in until he was three years old was very difficult despite the hope and anticipation a new home can bring. As old as that painted white house was, built sometime in the 1930’s, my husband and I had spent many a night in the sun-room out back and still filled the house with the things we hunted for together. I went into labour in that house, walked half a block during labour to realize I couldn’t walk anymore and said a goodbye that day to the house that would quickly change as a new baby filled its walls with both cries and laughter. I do remember that day we returned with our newly born Adam. The house was dark on an early spring morning and I could feel it missed me. Its air was already stale. Yet quickly, Adam filled it up again as he took over all of our living space with baby-things.

I also remember the day we moved out for good and Adam stayed with his grandparents. We had moved on a sunny hot day also in a spring season. I remember the first few strange nights introducing myself to the house and the house to me with its new rumblings and gurgles. I never thought I would miss the old white house, but I did. Adam’s first important years were in that house. Still, even though we had moved in, I had forgotten his crib. I could not leave it behind. It was my crib made for me by hand by my own grandmother. It still sat in our old master bedroom, now scattered with dust balls. When Adam fell asleep in the back of my car, I drove up to the old house. It had clouded over and began to rain softly. That may have been the most difficult day, saying goodbye to what it housed — my first meeting of my stepchildren, my first living with Henry, our wedding and the photos we took inside, and of course, of Adam and the family we had built around him.

I am half-living at the moment. I am living in the past and in the future, the present quite a haze of where-to-go-from-here loss and opportunity that divorce sets before me. I am half-married, half-moved as I transition Adam to yet another house and am about to move from the one where I write this post today — the modern one. The goodbye has been quiet and sad, but it is slow, which is both good and not so good. It is good for Adam as he gets used to the idea that his mother will not be living here anymore, but his dad will move back in.  This was the house that started writing projects, The Autism Acceptance Project, with its office overlooking Adam’s trampoline where I would write, create and watch him laugh.

I will call myself a nester. I am building a new nest for my baby-bird. It feels lighter, but goodbyes are a necessary ritual, no matter how painful. I will borrow what I found a particularly beautiful paragraph writing by Louise De Salvo on goodbyes:

“But when will the new house become a home? When I’ve organized its rooms, its closets? When I’ve hung our paintings, our positioned our pottery on top of dressers? When I’ve cleaned it top to bottom for the first time? Or will it take time? Or will it take not time, but instead a bread baked, a soup made, a journey returned from, an illness survived, a few pages written, a sweater knit, to make the house feel like home?

First, though, I must let this house go. But I can’t. Not yet.

I feel like I’ve betrayed this house, for I’m the one who’s leaving. The house can’t go anywhere. It certainly can’t come with me, though at times I have imagined taking it with me, digging it out of the ground, propping it on stout timbers, and moving it, like the houses I’ve seen moved from one place to another on the East End of Long Island. How can I think of letting perfect strangers move through its rooms when it’s sheltered us so well all these years? How can it go from being mine to being someone else’s? And yet if everything about the house can change — the style of its furnishings, the contents of its cabinets and closets, the color of its walls — then why have I loved it so exclusively? While I lived here, I foolishly thought no one else ever would. So now, too, I feel like I’ve been betrayed, even though I’m the one who’s leaving.

About leaving this house, I feel sick inside, like a brute, like I’ve disrespected it, violated it. I feel like I’m abandoning a lover for no good reason. I feel sure the house will miss me, will wish I had stayed on; I feel sure it won’t like the new people, for they won’t understand it and its special needs and endearing quirks — how it doesn’t like curtains on its windows; how it likes its wood-work cared for; how its stained-glass windows must be treated gingerly; how its roof must be cleared of snow.

For this house is not merely a house. It has become imbued with spirit. My spirit. My family’s spirit. When I leave today, I’m sure that I’ll be leaving something of myself behind, something of myself that will never be found again, something that will remain here.”

Louise De Salvo, On Moving: A Writer’s Meditation on New Houses, Old Haunts and Finding Home Again, New York: Bloomsbury, 2009, (pp. 209-210).

It is no secret that divorce is overwhelming. Add to that being ill, moving, or receiving that “autism diagnosis” about five years ago has made my recent life path rather bumpy — a list of to-do’s and goals and I’m getting tired. If living our lives “authentically” (a popular word used so much today) is a goal, I might suggest that the way we live is anything but.

As a mother of a special needs child, there is more work as our children depend on us for longer periods of time. I’ve devoted my life to Adam, and maybe even garnered some of my identity from that. Yet, how can parents, especially those of us who strive to seek acceptance and advancement for our children in society create a balance? How can I still give to Adam all that I can, be the good parent, AND take care of my own needs, AND contribute to the world?

I may have found part of the answer in the bigger picture. The self-help books are okay, but they all seem a little saccharine. Sure, there are some good tid-bits of advice here and there — perhaps we all need to read them when we are in moments when the waters are just too deep.

As friendships dissolve (a natural consequence in divorce is losing “couples friends”), and I think I’ve gone as lonely as I can go, the insights and work of others have held me up.  It keeps me steady. It enables me to think about the future that is greater than my own issues, but also not whole without them, and that beckons me to become more a part of it.

As any parent — special needs or not — we are all familiar with the daily to-do lists and tasks that keep us running but make us feel empty. What have we achieved? Do we do our daily tasks with a level of intention that keeps us engaged in life and with others or are we just racing through? What is the goal for Adam and I, if not for all of us? That is the challenge we all face and I believe the answer is in slowing down and doing things with greater deliberation.

Also,  part of the answer lies in the communities we build — not from raping the land and a town with money-making developments, but in perhaps growing a little less and creating environments where humanity thrives.  Were we to have beautiful towns, places to walk to get our groceries from local farmers, events nearby we didn’t have to drive to, and neighbourhoods of children gathering to play again, rather than establishing “play-dates” weeks in advance, I believe we would all be less lonely and we would fulfill many goals we have as an autistic community.  Isn’t this what we want for our autistic children most of all? To be included, happy and less lonely? To be contributing members in our communities? How can we create this if we barely get to know our neighbours?

We all have that nagging feeling, don’t we, that we are all less connected to each other than we want to be? Fine, we in the autism community have connected globally via the Internet, but where do we go in our own towns?  Facebook, among other sites, tries in allowing people to advertise events. But what of just going out… unplanned? How many calls do I receive of parents with autistic children (now adults) who are desperately trying to find a group to belong to? And what must I do? I have to think of all the organizations that have formally created groups with specific meeting times that individuals must drive to. By the time we get this far, it already sounds like too much effort.

As I look at the work of Edward Burtynsky in Manufactured Landscapes, I was taken aback by the scale of growth and efficiency at the cost of humanity. His photographs of urban and industrial landscapes, he seeks not to judge our economic growth and efficiency, for he captures a sublime and repetitive beauty in that which we would otherwise call ugly, but he tries to raise our consciousness in how we are living — tenuously and on the brink. It’s as if he is saying, “okay, we’ve reached this point and now we have to change,” not as punitive, but as an empowering statement. We have created manufactured landscapes of such scope and scale that surpasses the building of the pyramids. For that we must recognize what we are capable of!!  Now, he asks through his work, where or what is the humanity of our economy?

In The Geography of Bliss and Deep Economy, both authors use the study to point out that “growth is no longer making us happy…Though our economy has been growing, most of us have relatively little to show for it.” (Deep Economy, p. 11). If every action in our economy burns fossil fuel, it also burns human energy. And the costs are apparent in the desolate backgrounds of Chinese culture, and the faces of a tired Chinese people — the fastest growing population and nation in the world.

So you might ask: What does economics have to do with raising children and marriage?

Absolutely everything.

“In 1946, the United States was the happiest country among four advanced economies; thirty years later, it was eighth among eleven advanced countries; a decade after that it ranked tenth among twenty-three nations, many of them from the third world. There have been steady decreases in the percentage of Americans who say that their marriages are happy, that they are satisfied with their jobs, that they find a great deal of pleasure in the way they live.” (Deep Economy, p. 35)

As I digest my life up to this point, and the general dissatisfaction of our society, I must consider how connected all of this is, like Indra’s Web. Divorce may be overwhelming, as are all the current problems in our world, but perhaps the answer in building a greater sense of satisfaction in our lives by creating more simplicity — shedding the complexity and just being honest with ourselves that we can no longer do things the same way as we used to. It involves, as in divorce, letting go.

It is no surprise to me that there is a strong resurgence of farmer’s markets — there is one I discovered in a nearby artist colony that I now take Adam to on Saturday mornings and it has become a real gathering place.Adam and I like to go out, ride the bike, pick up groceries on foot as much as we can, and we can be more aware of the energy we burn. The more attention and care we bring into our lives at every level, our quality of life improves. So this not only stands for the average family or person, but also for the special needs family, for what we need most is connection with others.

I think about the Supermom I was called to become when I was a young girl (I went to a Catholic all-girls school which further pressed me):  “You can bring home the bacon; fry it up in a pan; and never, never, never let him forget he’s a man.” That commercial tune rings in my head and makes me want to go back to bed!!  It’s not about pleasing everybody. We cannot, lest we displease ourselves. It’s about how we live and do we go to bed every night knowing that we lived our day well, without the frazzle and anxiety of what we must produce tomorrow. For perhaps to live life simply is not to do too much, but to do a few things well, including putting the intention back into the simple things we must do.

I have come to think that being proficient at one or just a couple of things is better than being the most efficient mother — the autism mom who advocates, “fights,” for her child’s rights, organizes events, sits on boards, writes articles, and barely has time enough to cook a good meal. It’s not that I’m going to necessarily stop all of these things, but I can’t do it all at the same time. The time has come to shed and to rebuild, to de-commit and commit, and to teach my son how to live a life well. I am sad to say that divorce has made me view life this way. But this is what happens when life hits you over the head. I may have still come to the exact same conclusions if I were still married, but I believe a marriage is a reflection of all the systems we build. And it too needs the commitment of simplicity.

You won’t want to miss this interview on Blog Talk Radio. John Best calls in.

Ari Ne’eman of The Autistic Self Advocacy Network, and an autistic man himself (he can be viewed on the Positively Autistic video by CBC on the right hand margin of this blog), is now a writer for The Huffington Post.

Congratulations Ari on this and the outstanding work you and ASAN is doing.

View Ari’s new column on HuffPo here.

There was a time when I was chastised for comparing certain persons of a certain culture in their wearing of a sign to classify them.

I know that I might give Adam something he can hand to someone one day if he cannot talk. Lots of kids where pictures on their belts so they can easily communicate to another person, or they might have one of those nifty wallet cards telling someone they are autistic. People with allergies or other medical conditions (I am not classifying autism as a medical condition) where Medicalert bracelets. So is this helpful? Or is the road to hell paved with good intentions?

What do you think?

Indonesia asks disabled pedestrians to wear signs
Transport experts said the law was preposterous. -AFP

Tue, May 26, 2009
AFP
News @ AsiaOne

JAKARTA, May 26, 2009 (AFP) - Disabled pedestrians in Indonesia are required to wear signs identifying them as handicapped under new traffic regulations passed unanimously by parliament on Tuesday.
Amendments to the Traffic and Transport Law state “handicapped pedestrians must wear special and clear signs which can be easily recognised by other road users.”

The lawmaker in charge of the committee which drafted the amendments, Ahmad Muqowam of the Islam-based United Development Party, said they were designed to protect disabled people from road accidents.

“This is a humanistic act. It’s for their safety on the streets,” he told AFP.
Asked what the signs should read or where people should wear them on their bodies, he said this was up to the government to decide at a later date. “They won’t be penalised if they flout the rule; it’s only a precaution for their safety,” he added.

Transport experts said the law was preposterous and the government should focus on providing facilities such as level footpaths and wheelchair ramps rather than requiring people to wear signs.
“It is strange when handicapped people are asked to carry extra burdens and obligations,” Institute of Transportation Studies chairman Darmaningtyas said.

Association of the Parents of Disabled Children chief Hendratmoko said: “This is a mistake. Why should our children put signs on their bodies?

“I don’t understand what’s motivated the lawmakers. They should give protection by providing facilities for the disabled. There are hardly any facilities even in a big city like Jakarta.”
Critics have complained that the amended law gives priority to car drivers over pedestrians and those using public transport, and runs counter to efforts to encourage people to take buses to alleviate pollution and traffic jams.

The Indonesian capital, a city of some 12 million people, is choked daily by traffic gridlock but there are almost no facilities for pedestrians - able-bodied or otherwise - except footbridges.
The Institute for Transportation and Development Policy has predicted that by as soon as 2014 Jakarta could experience total gridlock, where all road space is filled with barely moving vehicles.

The National Post ran another article on Oprah’s hanging-by-a-thread reputation in brining on board Jenny McCarthy, poop-talker and vaccination activist. McCarthy, former playboy bunny, suggests that the MMR vaccine caused her son’s autism.

“Ms McCarthy announed what her publicist calls “a development relationship” with Oprah’s company, Harpo, earlier this month. Her first gig in the deal is a Give It up Before Summer blog on Oprah.com where Ms. McCarthy blogs about her daily battle to give up refined sugar…she has blogged about hot to refuse a cinnnamon bun on a first class flight and how her poop contains too much yeast…”

Yep…that’s what I want to read about…Jenny McCarthy’s poop. I certainly am tired of listening to her claim that vaccines cause autism, with no scientific evidence linking them at all after much rigorous research. I believe the danger as Emily Senger, the reporter at The National Post cited via Dr. Kumanan Wilson, is quite correct: Oprah is seriously risking her credibility and reputation. Does Oprah care to investigate the abuse and deaths caused by not vaccinating children or because of the unacceptance of autistic people as they are either by misunderstanding, ignorance or caregivers stating they will ”try anything and everything to cure [their] autistic children?” For a well-rounded view of the issues facing autistic people and their families, there are many non-celebrity stories that would be far more interesting.

Remember Phil Donohue, the talkshow host from which Oprah’s show was fashioned? Remember when Phil and Oprah used to interview real people with real issues to discuss in a public forum — many of them who did not have book credits or celebrity status attached to their names, but who were simply interesting in their own rite?

Are the days of town-halls and really interesting talk shows gone? I really enjoyed watching Oprah when she did these kinds of shows that seem to have gone way way way by the wayside.

“Most writers write to say something about other people  – and it doesn’t last. Good writers write to find out about themselves — and it lasts forever.” — Gloria Steinem

I have to admit it. Going through this divorce is one of the toughest things I’ve had to go through in my life. It really bothers me that some people think it’s easy and trite. It definitely is not. My marriage to Adam’s father was the most important adult-to-adult relationship of my life. So the the reason I’ve had trouble working and writing and responding to emails.  So the reason that many of my usual tasks have easily slipped my mind. I’ve hesitated and hesitated — do I write about my personal life? Do I write at Adam’s peril? What do I keep and what do I reveal, for as a writer, I find it difficult to avoid the truth and the self and disguise it in fiction. I am not a fiction writer. Not yet, anyway. As for Adam and this divorce, as far as I’m concerned, I’m only interested in human dignity, and while truths emerge over time and perspective, Adam’s father and Adam’s mother deserve the best regard and respect for Adam’s sake.

I’ve hesitated about writing about myself too much for fear it may appear like “writing therapy.” But let’s face it: all reading and writing is “therapy” if it brings us to a greater awareness and understanding of ourselves. The best reading is the “a-ha” moment — a connection with an author’s observation. For me anyway, the best reward is when others express gratitude and connectedness to my writing. Another reward is a larger perspective of life and the world itself, and a growing compassion.

Adam and I must move houses. I’ve been preparing one since the beginning of March. This is also top of the stressor list (death, divorce, moving…). So again, if I haven’t responded to some of you, please do not take it personally. Thank goodness for the house, even if it’s all bittersweet. A house allows us to build again. It asks for creative energy. As a creative person, I’ve come to realize that I’ve had a desperation to build something lovely, something peaceful.  It is only bittersweet because I am still living in the “matrimonial home,” which I built for my family and will soon have to leave. I put as much creative energy into that home too.  Yet with Adam’s father now gone, there is a loneliness to it all.

As for work in autism, I do so again quietly. TAAP will have to reassemble. It’s website will remain up as I seek to find ways that outsiders can contribute to its growth more readily and easily. As I read Gloria Steinem, I related to this: “I had felt burnt out many times in the past twenty years, like so many people in social-justice movements — especially in the feminist movement, to which women bring the very training in selflessness we are trying to change — yet unlike other women with more self-vision, I believed so little in my own inner world that I couldn’t stop to replenish it. Like a soldier who is wounded but won’t lie down for fear of dying, I just kept marching. Why? Well, if I stopped, I would have given up the way I made myself ‘real’ — that is, by being useful to people in the outside world — just as I had made myself ‘real’ as a child by keeping so busy that I numbed the sad unreality at home where I looked after my mother… my image of myself was very distant from other people’s image of me; and that, in short, my childhood years — a part of my life I thought I had walled off — were still shaping the present as surely as a concealed magnet shapes metal dust.” (from Revolution From Within, preface).

Maybe you can tell where I’m going as I move through the fact that I had lived my recent life for Adam, and I, like so many other women, was taught that the only way to be a “good” woman or mother was to constantly work and serve, leaving myself to the very end, if at all. I am not at all complaining or suggesting this was or is Adam’s fault. All of it was my choice — to work, to serve — and I still intend to do so. It’s just that as mothers with disabled children, we have a tendency to throw our entire selves into our children. And why? Needs are higher, for certain. But I also wonder about the lack of social supports to help us out — lack of respite for the average family, lack of inclusion, services and so great a lack of understanding. How many years (since 2005) have I written this blog and written before this blog, trying, by gargantuan effort, to convince family, friends, schools and public, that Adam is indeed worthy and valuable as he is?

Was it worth it? I have no regrets. But work in social justice movements may come at a high price. Not paying attention to our own growth and nurturing our relationships also comes at a high price.  How to mitigate it? I’m not so sure. I am not solely responsible for not nurturing it. I did what needed to be done. Adam still needs this to be done. I recognize that I also need to take care of myself for him. And that fine balance seems difficult for me to achieve. Or maybe I’m simply too hard on myself.

I’ve been called strong so many times. As I move through the pain and loneliness of divorce, sometimes it sounds like an easy write-off to me — “you are so strong, you’ll be fine.” I can’t tell if people say this to me because they fear my pain or just do not want to engage in it (understandably). I feel obligated to keep on a happy face for others, so I do not scare them away. Being a divorced woman comes with its share of stigma.  All I can say is I recognize that my situation renders great discomfort in others and sometimes I cannot spare the energy to spare them, even though I try.

For certain, I’m learning so much. I’ve spent the day in my new garden, filling in gaps in the earth with new perennials, being with the plants and the earth, knowing they will grow and bring me pleasure with their life. The dirt beneath my fingernails and a sore back is also a reward — knowing that I’ve contributed to renewed growth. Gardening is a creative, hopeful act and a belief in the future. A sore and gritty body means I’ve done the work to nurture it.  I do it as Adam is away this Victoria Day long-weekend with his dad. It gives me time to think.

I’m alone and I honour my relationship with myself and with Adam’s father to permit myself to mourn and learn as I dig deep. I believe that distraction is counter-productive. I believe that if things have to drop away for awhile, so be it, as I put my energy into rebuilding my life and making it as productive and creative as possible. I believe that, in the words of Noah Benshea, “strength is not the absence of weakness, but how we wrestle with our weaknesses.”

“I worshipped dead men for their strength, 

Forgetting I was strong.” — Vita Sackville West

A- ha.

I love this picture. It was taken yesterday atop of the CN Tower during a Mother’s Day lunch. Adam loves to kiss mommy and make her laugh (who says little auties don’t have a sense of humour!). As a woman going through the roughest times of her life in divorce (I will suggest that when someone you love leaves, it is like a death), it feels like a relief to count on the one thing that keeps me grounded and content. From this mom’s perspective, Adam and I are each other’s rock. We’ve managed to keep it together, despite lots of changes and a coming move to a new home. If divorce and moving be the top life stressors, then I will tell you, I think I’ve made it through.

I am sad to soon leave the home I built for Adam and my family and all that it represented. Someone said to me that a home is just four walls. But he was so wrong. A home is where the heart is; where love resides. My heart, though healing from a break, is intact. With a growing wisdom, I will raise a little boy knowing that where-ever Adam is, my home will be.

I’m in a Starbucks because my Internet is down at home. As I check in on my email, I listen to three newbie autism moms refer to their books and talk about anxiety and autism, schools and trying to make sense of it all. They are abuzz on caffeine and worry, their voices popping in and out of each other to get a word in edgewise on a new book they are reading.

They are talking about methods, what’s better, what’s not. For some of us older autism parents, this is old territory. I am listening to the mother I once was and ponder the one I am becoming as Adam grows, as I go through separation and divorce. The very fabric of our lives are changing in profound ways — in ways I am right now, too close to objectively comment on. Yet listening to new moms allows me to to consider how time changes us.

There would be nothing I could say or do to change the learning process they must go through. They are engaged and intent. They are Jenny McCarthy’s “warrior moms.” There is likely nothing that will stop them from trying to do what they can for their children. For some, it will be the anything and everything approach. It may be reading every book they can get their hands on. It may later or sooner be meeting autistic people, reading research, attending conferences….I can make a long list of to do’s that was a part of my journey. I have kept every list, every day diary, every journal I have, and every communication book on Adam since day one.

As soon as Adam was diagnosed, I began reading. He was so ill, I remember. We had our suspicions, Henry and I, and I booked several diagnostic appointments just prior to our Xmas holidays in 2003. Adam was 18 months old. We had traveled to Nassau and Florida and Max and Adam became very ill with a horrible flu. I also became very ill. I nursed and tried to help Adam as I also lay for days in my in-law’s more comfortable bedroom in Florida. I don’t think we got up for nearly a week. Adam ended up in emergency on intravenous. It was a nerve-wracking time. Still, this period began my intensive reading about autism. I started by finding books at our local bookstore and it went from there. I was hyper-vigilant and anxious. Life as we new it (or expected it) had suddenly changed, although Adam had not changed at all.

I’ll agree that early autism moms can become “warrior moms,” protective of our children and determined to get them “help.” I’ve learned to calm down. I’ve learned to respect Adam’s way of learning. I’ve learned that what I did and read and all the hard work was something that I would never and could never change. Yes, I’m on a much different path than Jenny and I’m one of her critics. Yet when she wrote “warrior mom,” there was something universal in that that I know every mom can relate to.

The more I’ve learned to accept life as it is, the more easily I can swim in it. When I hear a report on CNN about autism and amygdalas and brain size, the more I know this will be tempered by further science. Gary Taubes, as I quoted in my essay The Mismeasure of Autism noted that when it comes to science, it is the first claim that is likely to be wrong. While CNN is reporting a “finding” based on a theory, it is still not exclusive fact without further testing under different perspectives.

I have received a few queries on The Autism Acceptance Project’s website. It seems to be down, but we are working on resolving the problem and it should be up again soon.

We will be working on the website in other aspects as well.

Stay tuned!

I’ve been reading the thousands of pages of Adam’s journals I’ve written and kept track of over the past seven years. It’s a lot of tracking. I’ve tracked everything from the structure of our days, the logs of his work and progress, his first “steps” in every aspect of his development, those early ABA charts, other progress reports, my to-do lists….I still survived on severe sleep deprivation (Adam never slept through the night), life obligations, taking care of four other step children (I always felt guilty at having to ask them to quiet down when Adam came around not knowing that Adam was autistic and extremely noise sensitive at the time), autism activism and advocacy, three of my own surgeries and three of Adam’s (ear and dental), and of course, my own struggle with accepting the various aspects of the journey. I have so much paper that I am quite surprised and fascinated that I look back on those old days as no big deal. Yet, one can say that in retrospect. I could tell parents all about acceptance and the journey, but each of us has to go through the years and experience ourselves. When I write like this, I have no idea if it fully sinks in to a “new” parent. There is reading, absorbing and then there is knowing. I can see it through my notes, all the queries, all the research I did, all the intensive time I spent observing and playing with Adam. I see who I was and who both Adam and I have become.

Other than pejorative referencing of autism as illness, and of course, dangerous therapies that risk a child’s health, well-being and life, I can discuss autism with so many parents with different attitudes, which is the gift of time. I meet parents who have taken a different route, who think differently than I do, and in most cases, it’s pretty much okay (again, unless they want to describe my son as of lesser value and do not accept him, then get out of the way).  

We are all on the same route taking different paths. Many of us see things differently. There is still work that needs to be done; questions on the nature of what it means to be human and a full acceptance of our children by and in every facet of society.  I do not think that our kids need to change themselves in unnatural ways (an autistic person will always be autistic) in order to fit in, for being a part of this world is a constant compromise, but one should never compromise one’s true nature. As a woman going through a divorce who has made enormous compromises, this resounds so strongly within me these days. Being a woman in this world somehow draws me closer to others who need that strong sense of acceptance and belonging. I know I write as a woman in a particular circumstance, but there are dads out there too who are going through the same journey. I do not want this post to sound this is for women-only. We can only belong when we first accept ourselves.

I think I’ve survived it all so far pretty well, maybe even more than “pretty-well.” Yes, I have feelings, and no, it’s really not easy. One doesn’t have to pretend to be strong in order to be strong. Strength comes from not being afraid to talk the truth — in not being ashamed of being sad, weak, in need of help, in finding the humour in things…

Divorce, cancer, autism, stigma, and I’m still standing. Adam is still happy through it all because mom doesn’t believe that anything less than fortitude, truth, and a positive attitude is warranted in this world. Mom believes that Adam is good enough as he is, and now, as a single person, that she is more than good enough as she is. She expects Adam to clean up after himself, go to school, continue learning and contributing to the world. I expect no less of myself — of fulfilling my own purpose. Everyone, no matter what challenge, can press on. We all have a purpose in life that needs to be fulfilled. It is our hope, our inspiration, and our difficult, yet still inspiring, mountain to climb.