He must go out into the world….

Filed Under (Adam, Autism and Learning, Communication, To Get To The Other Side) by Estee on 28-01-2010

Adam is almost eight years old. I can hardly believe how the time keeps marching by; how the year of separation from Adam’s father has also gone by. Soon, Adam and I will be living in our new house and rebuilding our lives.

Adam is changing and I reminisce from the early days — when he was diagnosed at 19 months of age, how I started this blog back in 2005. He is becoming more curious, more adept, stronger. He is always learning. He gets frustrated. He still cannot communicate with words very well. He must use a device. He does not understand, I believe, inherent dangers as he explores his new exciting world. Laundry chutes, small dark corners are inviting spaces for all little children. I teach as best I can with a firm “no,” a new rule that he can easily comprehend, and a stop sign posted to various areas of the house. It may not be “designer” but style makes no sense where safety is concerned.

Adam is also heading out into the world. Yes, he has his aides. But as a newly separated person who now must share time with Adam’s father with regards to Adam, I find myself during lonely nights thinking about how life is always about letting go: of fear, of things, of little children growing into bigger independent children (or quasi independent in our case). As Adam grows, I must learn to let him out into the world with others so he can learn more. It is a great challenge for any parent, and perhaps even more punctuated when one is a single parent. And as all things with our children as we watch them grow, it’s (delightfully) bittersweet. Adam would grow up resenting me if I held him back and did not let him explore. I have to let him do it in safe ways, in stages. When he grabs that sharp knife to cut a piece of fruit, I have to teach him with a dull knife (and with supervision of course). I have to let him explore dark spaces by creating safer dark spaces. I have to let him jump around the house, not on furniture where he may hurt his head, but on equipment set up for the task of jumping. In the case of Adam and his neurological needs, I also have to LET him be who he is and get the feedback he needs.

He needs to run, he needs to jump, explore, and yes, eat lemons. I would never be able to hold him back to change these activities because they don’t look like typical play. I need to provide him safe avenues to explore these things. Instead of viewing these things as “overwhelming” because they are not what all typical children necessarily do, I must learn new ways of helping him explore. While there are not as many programs and “how-to” books out there, common sense, time, and a deep breath help me figure it out.

It’s the same at school and we are lucky right now to have a school that allows Adam to explore safely, that allows aides, that allows us to bring in adaptive technologies and programs that help Adam learn in the way he can. But when people first meet him, I am starkly aware of how they will measure him — what “competency tests” to assess what he does and does not know that are delivered in a way that we take for granted, and perhaps that Adam would not be able to respond to. Far less effort (and money) is paid to adapting those tests so that he could respond — like visual options for answers, multiple choice. Adam is extremely visual and “performs” well when given this option. And I write this because I saw the movie NELL last night with Jodie Foster. I have been calling Adam — among many nicknames like boo boo bear, moo moo, Adiboo, Adamame… and Chickabee — the nickname Nell uses in the film. I must have picked it up a few years ago when I first saw it. I love the movie Nell because it reminds us that humans can create languages that perhaps not everyone understand easily and in the way we are used to, but how we create meaning.

And Adam communicates, indeed. He has a language that I’ve learned to, believe it or not, take for granted! But as he goes out into the world not everyone will know his language. He would be given those “competency tests,” and maybe even fail because they don’t measure in a way that addresses how he can express what he knows. So yes, my Adam now goes out further into the world. And yes, we have to teach him to communicate within it and learn the more common way of communicating. But I still believe he will and should always keep his mother tongue.

Ever Tried, Ever Failed: No Matter, Try Again

Filed Under (Art, To Get To The Other Side) by Estee on 21-01-2010

I’m excited about this:


This is a painting made for me by Carla Lipkin (click on her website for more information about her artwork). I believe if you click on the image, you will see it more clearly. Carla has worked on it for about six months in preparation for my move next month. It now sits proudly in my dining room. It is a compilation — about thirty layers — of quotes and words I have sent her that have significant meaning for me as I “get to the other side” of my life after divorce. Over the past year, I have been reading and writing and meditating rather than putting myself out there too soon. I believed that mourning a relationship that was the most significant of my lifetime (so far) warranted no less of a process.

I decided, with Carla, to make something beautiful out of this period, and I am excited that it manifested in this result. I want to thank Carla and Hilary (her mom and my dear friend) for supporting me and for making an exceptional commissioned work that will remind me that there are no failures in life — only experiences. That said, thanks also to Adam’s dad not only for thirteen years and for Adam, but also with whom I hope to share a future of positive co-parenting of our wonderful boy.

Thank you, 2009

Filed Under (To Get To The Other Side) by Estee on 12-01-2010

My little ditty (video) came out very little. I wrote a post with this but it also deletes the video (I know, it was me) and I am letting go of struggling to make it bigger. So grab a magnifying glass… the beginning is a white owl flying in the daylight. They are mainly photos I took in 2009. There are pictures of friends and family, a couple of old highschool photos sent by old friends, and the places I visited this year… Beethoven’s front door…skulls on an alter from the Napoleonic era.

I’ll write the post again this week. In the meantime, I need to thank everything that happened in 2009. They say that we should not discount that in times of struggle or crisis, we just might be having the time of our lives. Click on “Thankyou” below to view:

Thank you

Travel and The Autistic Child

Filed Under (Single Parenthood, To Get To The Other Side, Travel) by Estee on 06-01-2010

Curiousity is a wonderful human trait. Adam is autistic and while he needs some regularity and structure and familiar environments, he also needs to explore new ones. He is curious. He likes to explore — in his own time — new foods, new things, new places. I pride myself on having traveled with Adam even when it wasn’t easy to travel with him. I do it with him as a single parent now, and his dad and I did it together when we were married. While I was tentative in Adam’s early years of flying him as far as Africa, I do not rule it out as he grows older. Just because Adam is autistic does not mean that he should not see the world. It’s how we orchestrate the process and itinerary that’s important. As a parent, I know I also have to be prepared for anything. Too many expectations can foil the best of plans.

We’ve had great flights and not-so-great-flights. I can never predict or prepare enough. I have learned from Adam to give ourselves plenty of time, to pack his bag with his favorite toys, foods, and DVD’s. I generally know that early morning flights seem to be easier than mid-to-late afternoon flights, although like everything, there are exceptions to that rule. Adam can be happy and calm as I “work” the flight with him. As a parent of an autistic child, I have learned to stay on top of Adam’s needs before any anxiety is triggered, for once triggered, it can be difficult to calm down. So as a parent, I don’t get to read the paper or a good book when I’m on a flight with Adam, but I still believe the effort is worth it. Travel, like autism and life, is a journey we cannot perfect. We cannot always predict how bumpy the flight may be. We can’t predict delays that are a normal part of travel. We can’t predict the mood our child might be in as much as we cannot predict our own. We can, however, try to prepare ourselves and do our best to keep calm in challenging circumstances.

I’m talking about travel because not only do I thrive on it myself, but as a single mom I look forward to exploring the world with my autistic son. We’ve been to Alaska, we’ve been to the U.S. and the Caribbean. I am looking forward to taking Adam to Italy where I have a feeling he will love it for the sights, the gentle sounds of a murmuring town square, the Gelato, tomatoes and salami — not to to mention the flocks of pigeons he can chase and the magnificent art. It’s my dream to take Adam abroad. But it’s not my dream to endure a difficult flight. It’s my problem, I know. I don’t like to see Adam suffer. I think I have to just get things organized (like rent one place and make it our “home base” for several weeks). I am admittedly tentative about the overnight flight to Europe. Everyone tells me that this should be the easiest because children “can sleep on an overnight flight.” They don’t know my Adam. I remember that twelve-hour day from Alaska back to Toronto where Adam was beside himself. We learned that Gravol didn’t put him to sleep as it sometimes does for other children. I’ve learned that Chlorohydrate doesn’t settle Adam before an EEG. I’ve learned that Melatonin won’t relax him on a flight, either. Adam, my Adam, is my prize-fighter. If Adam is anxious and does not want to sleep, giving him sedatives may have the opposite effect. He may metabolize medication differently. Or, he just too anxious, period.

I will eventually book that trip to Italy at some point, deal with my fears and see what happens. I think I’m a well-prepared mom and it’s the times when I’m most prepared that I find easiest for both Adam and I. I’ve found some good suggestions on traveling with the autistic child (see below) that others may find useful and I’ve employed about all of these strategies. But I’ve not yet traveled afar with the little one and I notice that no one else has written a thing on the Transatlantic flight and the autistic child. I assume (hope, really) that some autistic adults may have some suggestions on helping a prize sleep-fighter enjoy his mid-air travels. Like so much information we seek as parents of autistic children, there simply isn’t enough to support us on our travels in life and abroad.

Travel Tip Sites:
Autism Family Travel
Coping With Autism (on Vacation)
How To Prepare For Traveling With A Child With Autism
Caring for Kids — Air Travel

Ready, Set, Go!

Filed Under (To Get To The Other Side, Writing) by Estee on 07-12-2009

I hear Adam’s cherub voice, Ready. Set. Go! in my head as I’ve returned from Paris with fifty-two pages of something I think is finally good. It’s a little more than the weight and size of the limited edition of Jeanette Winterson’s Dog Days when I hold it. I can hear “ready, set go,” — that phrase we taught Adam to plunge him into a game or an activity, and I don’t forget the sound. Time, people, events happen so quickly and memory is fragile.

Over the past ten years, I’ve written two books, both incomplete and yearning to come together. At the Humber College for Writers and The University of Toronto, where I’ve attended writer’s conferences in the past, I was told that one’s first book takes about seven years to accomplish. Other writers have told me ten to fifteen years, which had me scratching my head at the John Grishams of the world and how on earth could they churn books out so fast. With my extraordinary impatience and harsh self-judgment, a difficult year has introduced me to some gentilité with myself and with others. So please “God,” this just has to be my year.

Thanks, John Baxter,  and his punctual rendezvous avec moi in front of Les Deux Magots, and avec Flannerie along Rue de Bonaparte and Rue Jacob, taught me a little bit more of the Paris that once belonged to Hemingway, Fitzgerald, Joyce, Miller and Gertrude Stein, among some other great literary figures. Thank you for also letting me hold a letter from Anais Nin to Jean Fanchette. I have come to realize why I became a curator but to understand the importance of preservation and memory.

I would recommend anyone out there to read John’s memoirs from Paris.x8790 He has written a series of that help describe the underbelly of and life in Paris.

It was not difficult to be alone in Paris and John’s paragraph caught my eye when I ran across it: “For a woman, Paris is a good city to be alone…Most of the expatriate writers who, since the turn of the century, created our image of the city — Edith Wharton, Jean Rhys, Janet Flanner, Nancy Mitford, Mavis Gallant, Dianne Johnson — were laureates of loneliness, who, even though sometimes married, preferred to live and work by themselves.” (page 137, Harper-Perrenial edition, 2005.) So here I was, a “ready, set go” decision to go to Paris, meet John, Leda and write. Another “laureate of loneliness,” but with no complaints.

Which leads me to also thank profusely, my long-time friend and pianiste extraordinaire, Leda Perac, who is another laureate living in Paris. I studied and became great friends with Leda in Germany fifteen years ago in colder, hungrier circumstances, nevertheless playing and singing our way through it all with Tori Amos. This time, having dinner in Le Châteaubriand with my face, she noted, visibily drawn from flight-fatigue, and undoubtedly the weight of a difficult year, she presented all of the letters I had sent to her in German when I returned to Canada in 1995 and 1996. Reading them between courses of poisson and some flirtatious chitter-chatter between myself and our exceptionally handsome waiter with the beautiful smile, I required her to translate the some of the very words I had written fifteen years later, to my chagrin. Leda, you helped bring back memories that remind me of who I was, who I am, and maybe more importantly, why I am.

And thank you, Paris. You gave me Adam, love, and fifty-two good pages. I’m ready to really begin.

Vive la présentation et le préservation.

“Relating is an act of life”

Filed Under (To Get To The Other Side, Writing) by Estee on 01-12-2009

Anais Nin is a woman who is true to herself and true to her writing from a woman’s perspective. I hope to visit her house in Louveciennes this week. Perhaps this short portion of the talk is a way for us to think about how true we are to ourselves when we write from where we are, which is hard to do when we hear so many ideas and inherit artistic styles. As I listen to her and write my way through this life as autism mom, single mom, and woman on a her own unique adventure, I am also learning that I have to go “the woman’s way:”

Finding Me in Paris

Filed Under (To Get To The Other Side, Writing) by Estee on 25-11-2009


After listening to La Vie En Rose, I booked a last-minute ticket to Paris. I leave next week to meet my girlfriend, Leda, who I became friends with while studying in Europe fifteen years ago. Leda is a pianist and her father is a well-known composer from Zagreb. I mention this because I need my artist friends. I need to be around them like I need food or else the daily ups and downs of markets confines the spirit to downward spirals only waiting for outside influences to send them up again. Art puts everything into perspective and reminds me that its wonderful to be a part of the human drama. Perhaps because of our foreignness in a foreign country — we were both struggling to be part of German life in a town called Frieburg – and because we shared Croatian roots, and maybe just because we both loved music, Tori Amos and lots of laughter, we became good friends.

I met Leda again in Paris while I was married a few years ago. Our visit was too short. My ex was not that interested in listening to our memories, which made me feel pressured to cut my visit short with her as most of us do when we know someone is waiting. Thanks to email and Facebook, I’ve reconnected with many of my friends and I decided at the last minute to meet her next week.

I don’t know if it’s part of the divorce process – that bucket list of things we’re going to do only because we are not married anymore. Or perhaps it’s due to the sheer desperation to find and become something new, someone different, and the best way to begin is with a list. Like a compass, it can point you in any direction. All you have to do is choose.

It’s difficult, though, to travel with a child waiting for me at home. A child who knows poignantly when I am not with him, with his few but precious words, I am told, says “mama…mama…” and who is visibly missing me. If Adam only knew the sickness in my stomach that I feel every time I leave him for just a few days. I hate that he misses me or thinks I am gone forever and I worry about it until I’m nauseous. It stopped me from taking many long trips my ex otherwise wanted me to take with him. When your child cannot talk easily with you about his feelings or over the telephone, the worry plummets deeper. So I only booked myself away for five days.

In the earlier days when I knew Leda, when we were younger but not less hopeful, I would have booked several months away under similar circumstances and I would challenge myself even more. It’s like teetering on the edge of an old and new life like standing on the Prime Meridian in Greenwich, which I actually did once at The Royal Observatory. Real and imagined, even with five days, I am crossing a line. While I always hate leaving Adam, I still feel a rush of excitement about going to the airport, which despite the relative ease and economy of travel these days, and with delayed flights, packed airports and flaring tempers, still elates me and I might as well be back in the 1950’s traveling as far and foreign as Asia. I feel excited watching all the people getting ready to go to their destinations – people who speak different languages. I will fiddle with my bag, dig out my book and sit beside strangers knowing that just one conversation can change a person’s life. I love the smell of engine fuel and the sound of them revving before lift-off, the movie selection and bad airplane food and the struggle to sleep because tomorrow will be well underway when I arrive.

As I prepare by launching into a temporary state of transformation, I listen to Parisian music. I have booked a full schedule of concerts, literary walks and dinners with Leda when I arrive. I will bring my journal, put on red lipstick and pearls, and smear my coffee cups and wine goblets with red stains, and find a good pen to buy. I can almost smell the Marlboroughs in the air, and hear the echoes in skinny lane-ways on the Left Bank of lovers talking and giggling and the sound of my feet behind them like Anais Nin’s as the night clears the air. In Tender is the Night, F. Scott Fitzgerald describes the phenomenon of people changing and becoming like the environment they visit. While witnessing a group of Americans in Paris he describes them as “undergoing a sea-change, a shifting about of atoms to form the essential molecules of a new people.” Travel, he implies, changes us and I yearn to be changed, if only for a week in time.

I am ready walk out into my life again in my little black dress — of rediscovering myself and perhaps who I will become. And I am discovering myself also as a single parent to my son who, even while schlepping to parent-teacher meetings, Adam’s team meetings, O.T., SLP and other like meetings in her Honda, enjoys her red lipstick and Coco Chanel. Discovery is a wonderful thing, and we can be many things to ourselves and to others. But most importantly, the best kind of travel and adventure is the kind where I know I still have Adam to come home to.

How did we manage that?

Filed Under (Single Parenthood, To Get To The Other Side) by Estee on 23-11-2009

How did I manage it, I think as I sit in an assessment for Adam today for a new AAC device. I want him to be eligible for government funding for it. I arrive at his school tired and disheveled in my leggings and baggy sweater that I rushed to put on, and my hair is whisked into something I can’t quite call a pony tail or a bun. Adam has not been sleeping the past couple of nights and I wonder how he can seem so much more energized than me. When I arrive he is reading and answering comprehension questions and he is doing so well sitting studiously, pointing to correct answers, his cherub voice affirming his choice. I sit low on a child’s chair watching from the right.

How did I manage to go through a separation and do all that and heal and still be on top of everything for Adam, I am thinking without coffee, watching my child work so well with the same sleep deprivation.

You see, I’m quite dumbfounded thinking how the year sort of just whooshed by and I was in a daze. I think when people go through separation and divorce, it is typical to heal for a year or two, and indeed I’ve felt sort of paralyzed. I remember thanking everyone around me profusely for their incredible support for the first eight months. I learned the importance of reaching out, and I sit now watching, less nervous and anxious than a few years ago when we would go through the same assessments.

When I look back on the past year, I can’t help marveling at Adam during his assessment today and think about every evening when he comes home from school when he reads to me about what he’s accomplished at school. He has learned to read out loud. He has learned to become an independent typist, and now he is drawing like never before. Yes, we have our challenges too — he is more rebellious these days, knowing what he wants, not unlike many other seven-year-olds.

Sometimes I wonder if children also rise to the occasion, and I believe Adam has done just that. I’m reading my blog The Joy of Autism — the older version before it was mistakenly taken down to reminisce. As I watch Adam now and process the year that has passed, I sense a great transformation that is happening in both of us. I see how I’ve evolved and softened, wanting to change direction a bit from the way I wrote and blogged in previous years. I see how Adam wants to be mommy’s big boy and how he makes an extra effort. Hindsight is not just 20/20 — it makes me appreciate just how much we’ve actually accomplished, and how much of a team we’ve become.

It’s hard for me to write this. I’ve got butterflies like a person who is trying to get back out there, trying to re-launch and I know I’m quivering and teetering. Yet today I sit even more diligently than ever, writing my fifteen pages a week. Adam and I launch into projects like we never have before.

I guess we managed.

A Mother’s Writer’s Block

Filed Under (To Get To The Other Side, Writing) by Estee on 16-11-2009

There are days I’m not sure how to write. This ache of inertia stops me short — what do I tell, what do I leave out? It’s a problem, actually, of writing about oneself; a problem that many writers experience when writing about life.

The mother always has to think twice. More like a thousand times a day. A mother has to wear a shield around her so she does not upset the children she loves so much. A mother has to be solid, grounded — a monolith MOTHER as described on the tombstones in Mount Pleasant Cemetery in Toronto where many of us Torontonians walk and run through every day like Central Park. I know, it’s a more melancholy park, you’re thinking. But it’s truly spectacular for it’s scale and landscape in the centre of our city. I walk by stone angels here almost every day. “Beloved wife of,” “Mother of.” That seems to be our legacy — and while it is an important one, it is peripheral and lonely. I am reminded of Margaret Laurence and her Hagar.

MOTHER – it describes everything and nothing out here in the cool fall air. If I were not a mother, I’d be pining to be one, envious of the epithet. If you don’t know me, now you do in part. I wanted a child so badly and had I not had one, I’d be crying now. I walk among the stones reading them, picking up brown oak leaves that smell fragrant as they decompose, wondering what my stone will read. I gather the oak leaves in my hand because that’s what I do when I go out on my walks. I collected my first three four-leaf clovers this year after looking for the previous forty-two of them. I would look for hours as a child. I’d search within the thick bush of clover knowing that one day I’d find my luck, but all I found were the common three-leaved variety. The rich green mass became too overwhelming to continue the search, and mother called me in for dinner. I found three this year when I wasn’t looking, and in the nick of time. Going through a separation while recovering from cancer surgery was the worst event of my life, so someone wanted to tell me something, I figure. Now, I pick up four oak leaves because the oak tree symbolizes strength and courage and you must know me — I’ve got a lot of that.

We are born into this life, a blank slate of possibilities and stories to be written. The stone that remains is a summary. The men in this cemetery typically get some interesting descriptions – heroes and veterans particularly so. I look for the mothers and wives, thinking that, like the sullen ambrosia of the leaves and earth, our time here is short but never lost; the earth and leaves beneath my feet are the smell of life that goes on forever. Dust to dust indeed — our fragrance is sweet.

Among phallic monuments erected to the family name or patriarch of the family, I’m particularly drawn to a modest stone laid just before it on the slant of a gentle hill. Sitting low to the ground, an older worn stone with the block letters spelling MOTHER. She is modest there in front of the huge piece of marble pricking the empty sky.

Underneath the “monolith,” the woman’s world is rich and wrought with things some children will never know. Why is it that men do not hide their desires as well? Why do they live out loud? Why do they get to?

It’s a problem, really, as a writer. I could dress her up in fictitious clothes – a universal mother, woman with desires and unmet dreams, who has been hurt, who has stories that can never be told, or if they are, told carefully.

I write around and around her like a rubber tube spinning so much harder and faster than the centre of the rim. The core that stands so open, awaiting the spear of the archer’s arrow, or my pen. Yet it compels, so to want to get to know her. I wish I could grab a cup of tea and look through her photo albums, have a woman-to-woman chat. I bet she shared her life with many of her friends. I bet she has a great story that should have been told. I bet it would have helped my own.


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.

What Remains. An Ode to Paper

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


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.


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.

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.


About Me


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.