Telling The Truth

Filed Under (Writing) by Estee on 31-03-2011

Toronto weather is undecided. Yesterday the city was teased by sunshine and the smell of defrosting earth. When I awoke this morning, a film of white covered by backyard. It was like that ( I was away) last week. March 22nd was delightful, I was told. A real spring. The tulips were sprouting. The following day my girlfriend sent me a picture on my phone –Toronto was having another snowstorm. Schizoid weather makes it difficult to plan whether or not I should uncover the backyard furniture and start putting out the planting pots, but that’s the kind of city I live in.

My house is crying throughout it all. There is a big leak in the brick wall out front. The walls are buckling and water drips out of the brick like tears. I have a patio that is over my garage. It’s too narrow to be a real patio — it’s more like an awning — and the drainage is bad. My gut wrenches wondering if I have to tear down a whole wall and put an iron fence up instead. I ache over the possible expense. I’m hoping that I, and my wall, can survive the thaw with a cheaper remedy.

Like the weather, I’m undecided about my writing. One day I want to just write about experience and let it rip. I’m currently in love with memoir. I want to write about disability memoir as I’m writing my own. My mother approached me yesterday about my Italian dream blog post: “I’m a little worried about your blog writing,” she said, carefully searching my face. “What if someone gets mad at you?” Our previous laughter stopped cold.

“Mom,” I said as I put my glass of water gently down on my cracked counter-top. “People have already been mad at me. I just can’t stop writing. If I do, I won’t be able to breathe.” I realized what I said was true — not just some dramatic statement for the sake of winning a point. If I have talent or not, it’s beside the point. I need to write, and I get enough emails from readers to at least support me and keep going. I’m not ashamed to say that I gobble this feedback like a starving person — so grateful for it…thank you. Writing is lonely.

Her comment, though, made me briefly think of not writing at all. My stomach tightened and I grew anxious. I’ve been writing since grade five, when my five-foot feminist teacher believed it was in me to write. When I was a teenager, I spent nights sitting on my bed with the dim bed-side table-lamp writing reams of pages to a girlfriend who lived abroad — mostly about boys. When I’m alone, still, I’m always writing in notebooks, mainly on my bed before Adam wakes. I write in them every morning. Is this what makes me a writer? It’s such an odd self-ascribed title. Yes, I’ve been published a few times, but every piece of writing is like starting a new venture.

Writing about myself and my life is like digging in my garden and showing you the dirt as well as the flowers. It can be unnerving as I try so hard not to cringe at that dirty feeling on my hands. Sometimes I have doubts. They are probably good doubts when figuring out how to represent others fairly as well as myself. All characters, in fiction and non fiction, are complicated.

Wason Choy, a Canadian writer once said in a class I attended, that everyone who comes into contact with a writer should know that they are somehow going to be a part of our story. He didn’t say it quite like that, but Wason has written a lot about his Chinese-Canadian family. In the New York Writer’s Workshop’s The Portable MFA in Creative Writing, it says the following about memoir in “Why You Should Write About Your Unhappy Family”:

One of the most common excuses for people not writing the book they want to write — usually involving their family — is that it would hurt someone. Writing a book always hurts someone — preeminently the writer, who grows poorer and more alienated. And banging the head on the desk and devouring the contents of the refrigerator don’t do a lot for self-esteem. Writing is hard work, and we always want to avoid it unless it’s absolutely necessary. Obviously though, you need to apply common sense and a sense of empathy.

There are many choices a writer must decide along the way. I guess today I’m banging my head on my desk and isolate myself, yet again, in a 10×10 room with this computer. It’s raining outside now and my wall is bawling. The work continues.

Wanted: Bibliohome

Filed Under (Estee) by Estee on 29-03-2011

I want a proper home for my books. I collect a lot of books and I’m already wondering how to place them. I fight against my need for clean space and then cluttering it up again with more.

I want this:

It’s in Costa Rica. Ah well, I’ll keep working on it. Maybe I’ll come up with some good design so my books and I can all live in peace.


Filed Under (Parenting, Transitions, Travel) by Estee on 29-03-2011

I went to Bequia for March Break. It was my turn to take a vacation as Adam’s dad had him over the holiday. The island is in St. Vincent in the Grenadines and is really remote. I enjoyed every second of it.

As a single mom, I have a life with Adam and a life without. We are building a new life over the crumbled mortar of the last one, and often, that makes for beautiful design.

One realization I had after so much stress is that it is more important to be a happy parent of our children. Not only do I have to run Adam’s programs and team, but I think he’ll remember most the times when I was quiet with him on his bed reading books together, or we made jokes and laughed together. When I’m relaxed and fulfilled in my life, I find I have much more to give to Adam.

So I travel when Adam is with his dad, almost guilt-free. I sure do miss Adam when I’m away, but I also love being on my own again too. I also want to travel with Adam as part of my plan for writing and for building our family life. I need to travel to get new ideas and see life differently, and I believe children benefit too. I know that many parents hesitate traveling afar with their autistic children, and you can count me in. I’m worried about the flight, delays. A good plan is in the making.

Changing environments seems at odds for the autistic child who seems to need routine. Yet, Adam has also enjoys changes in environment. He tends to talk more when there is a change. So it’s a bit of a paradox. It’s the accommodations that bother him for the first few days which I have to think about in advance. I am trying to figure out how to make him feel more at ease when he’s in other people’s houses or when we are in hotels.

My idea? I’m thinking of renting a place in Europe that we can treat as our home base, invite friends, and take day trips. This is what I imagine:

I rent that villa in Italy I always dreamed of and bring Adam with me. We walk the Palazzo in Firenze, eating fast-melting gelato on a hot Italian day as hundreds of pigeons scatter, the quick flutter of their wings providing a light breeze against our glistening skin. Adam gleefully watches their flapping wings in unison.

We find a cafe off the main square at noon, the cathedral bells asking us to rest. He loves the spicy salami sweating in the yellow ochre sunlight and gathers whole pieces in his hands to take a bite. The ripe plum tomatoes burst in our mouths. As we lean back in our chairs content, the sound of footsteps and voices swell and dim as stylish men and women pass by easily on uneven cobblestones. I order a cappuccino and Adam eagerly spoons off the foam. Then, we walk across the square to the Uffizi and oogle the Birth of Venus and her flowing blonde hair. The long corridor leads to the next room, our feet echoing along. Children’s voices whine to go home or to the bathroom in foreign languages and parents say shoosh. I tilt my head sweetly at Fra Fillipo Lippi’s Madonna with Child and Angels. Then, I crouch down, and give my own growing angel a kiss.

Every reality begins with a dream. I have many and they all, even when I’m on my own, include Adam.

Wretches and Jabberers Coming to Toronto April 9

Filed Under (Acceptance, Activism, Inspiration) by Estee on 24-03-2011

Hope to see you there, April 9th in Toronto!

the fukushima 50

Filed Under (Inspiration) by Estee on 16-03-2011

I woke to Peter Armstrong from CBC News reporting on the radiation surge at the Fukushima Daiichi nuclear power plant in Japan. What a disaster of proportions only imagined by me, as I watch images of towns completely destroyed by water. On the television screen the water appears to roll in calmly. Then, as houses are torn from their foundations and begin crashing into others, I get a sense of what this image, in real time, may feel and sound like.

The ruin in Japan is almost unbelievable; this country which prepared itself, by code, for such a natural disaster. Yet, parts could not hold. I began to think about the 2004 Indian Ocean Tsunami, where friends stayed in Sri Lanka and told me their story of how the water surged to their hotel. My boyfriend flew there the following day. He showed me pictures of the ruin, recounting the despondent men searching along the beach for their missing wives and children.

A group of Sri Lankan women posed for him despite the atrophy. All bunched together as if for a Facebook party photo, their teeth and eyes gleamed. I couldn’t tell from a picture if they were just happy to be alive, or happy to be in a photo taken by a Westerner. Even that simple act brought happiness. Or was their happiness innate?

Which brings me to the Fukushima 50 — those employees of the nuclear power plant in Japan. They were left at the plant to assess damage and cool the reactors with seawater to avert a possible meltdown. It’s not going well. Still, they remain to try and avert a disaster — to protect others. These fifty or so men will die. Their exposure to the radiation will be too much.

Fifty men. A group of smiling women on a ravaged beach captured in a photo. Bravery and human spirit are remarkable gifts.

Bless them all.

early spring 2011

Filed Under (Acceptance, Estee) by Estee on 15-03-2011

With a glimpse of early March sun, I got an itch. I can’t stop myself from setting the date to open the pool, to think about the gardening I want to do this year, and to imagine where Adam and I will be a few years from now. I am imagining his, ours, and my future.

Next week is my birthday. I foraged through old photos of myself that I thought were taken as they say, “just yesterday,” only to realize that some of them were taken ten years ago. Adam will be nine years old this year. In the flurry of major life-transitions, I haven’t really realized how fast the time has gone. Going into my third year of single motherhood, possibilities are just beginning to dawn on me.

I have to acknowledge the writer gals who have kept me company along the way. When author of Falling Apart In One Piece, Stacy Morrison, said it took her five years to feel like herself again, I am now beginning to understand. Elizabeth Gilbert, whose quote from Eat Pray Love was included in the movie said, “Ruin is gift. Ruin is the road to transformation.” I can begin to see that too. I know the book was popular and I’m not supposed to like it, but like millions of women, I did. I love memoir and it was well written. I often pay my quiet homage next to the glow of night light to Joan Didion, Virginia Woolf, Louise De Salvo, among many others.

Richard, another student from my writing class said to me that we don’t “heal” from the events or people that wound us, yet we can make it become part of us. We are both divorced and his words were well-timed. We can’t expect to abandon pain completely, but we can learn and grow from it. We can become something different.

Beauty isn’t in perfection. It’s the potential we can see among the ruin. I imagine myself like spring itself — me, Estee, the one born on the cusp of spring, on an early Monday morning in a soft and gentle rain — nurturing the earth to sprout again. I am grateful for the circle of time and that spring has returned.

So have I.

For The Love of Letters, Lists and Other Things

Filed Under (Art, autism, Autism and Intelligence, Autism and Learning, Development, Obsessions) by Estee on 10-03-2011

I love letters. I’ve loved typeface since I was a child, remembering picking up my mother’s collection of old brown volumes of Encyclopedia Brittanica. I admired the letters, words and sentences before I could read them. Around the age of four, I tried to write letters of the alphabet by sounding them out. I was proud as I showed my mother warbled symbols drawn with red crayon. I don’t know if I wrote all the letters correctly, but I yearned to read… and write. 

These days I’m still attracted to typeface and letters, am a big fan of Cy Twombly and the artist, Agata Ostrowska (a printmaker whose work I’ve posted at the beginning here), and others who incorporate text into their work. It’s an “obsessive interest,” I guess you could say. I love the way one word can have one meaning when it stands alone, but when placed beside another, can connote something different.

Long after my “obsession” was contently embedded, I gave birth to an autistic child who also loves letters and read them by 11 months of age. I revelled in his ability while many others told me to be on alert — that Adam, with “hyperlexia,” meant that he would be able to decode words and letters, but his reading skills would still suffer later on — when he had to read phonetically and comprehend.

Yet, the other day, while sitting on his bedroom floor in the twilight,  I pulled out some pictures and words that I thought were completely unfamiliar. It seemed no-brainer to him. He just knew what all these pictures were. He picked up the information somewhere and organized it. I think kids like Adam are like sponges, picking everything up and making sense of it in their own way, despite the fact that we don’t always think so.

Language and comprehension is like art. We don’t necessarily acquire it the way Penelope Leach and Dr. Spock insist young children do, and we cannot be certain of how it is experienced and acquired, except that it does seem to be experienced on many sensory levels. We can make assumptions by how a person communicates, through different forms of expression. Like art, language acquisition, although widely studied, is largely ineffable; so vast that we will never know enough.

Lists, and obsessive interests like purported autistic collectors and artists like Joseph Cornell and Gregory Blackstock added fuel to my existing interest in not just letters, but the lists they can become. These are the way we organize information and make sense of them — the child who lines up the trains, the objects, perhaps,the artist who draws cities in perfect detail from memory, or the child who builds their knowledge like intricate networks of scaffolded knowledge. These are the ways we make sense and order of things.

Umberto Eco, art historian and novelist, by virtue of his profession, is interested in form, structure and order. As a curator of art, I too understand the art of catalogue. I enjoyed working in a library for part of my university career for this very reason. I loved the smell and feel of card catalogues in and of themselves. I understand the way curators and librarians collect things and how important it is — these libraries of human thought. In his book, The Infinity of Lists, Eco made me think about how I think Adam acquires language — like the curator — filing and cataloguing and even enjoying every sensory aspect like the musty smell of the card catalogue. How we take for granted the sheer art form of it.


To finish this post, I’ll leave the idea hanging for now. Just enjoy this. It’s something Adam found, actually:

But since we have digressed abundantly,
Turn back thine eyes forthwith to the right path,
So that the way be shortened with time.

This nature doth so multiply itself
In numbers, that there never yet was speech
Nor mortal fancy that can go so far.

And if thou notest that which is revealed
By Daniel, thou wilt see that in his thousands
Number determinate is kept concealed.

This primal light, that all irradiates it,
By modes as many is received therein,
As are the splendours wherewith it is mated.

Hence, inasmuch as on the act of the conceptive
The affection followeth, of love the sweetness
Therein diversely fervid is or tepid.

The height behold now and the amplitude
Or the eternal power, since it hath made
Itself so many mirrors, where ’tis broken

One in itself remaining as before.

— Excerpt from Dante’s The Divine Comedy, from Paradise, Canto XXIX, VV, 126-45.

The Inferno

Filed Under (Safety) by Estee on 04-03-2011

I haven’t written because I’m having nightmares. Last Sunday, the house I built with Adam’s dad (it took us from start to finish maybe three years and a bit) went ablaze. It’s completely ruined. The outer structure looks fine but the inferno shot flames twelve feet out of the garage. The entire inside is charred and burned.

I was the first to get the call. My neighbour/friend called me in trying to reach my ex, “Es, there’s twelve foot flames coming out of your garage!” she panicked in her othewise cheerful South African accent. I told her to hold on as I frantically tried to contact Adam’s dad who was in the air enroute home. I fumbled with my cell phone calling every number I could think of, and the people who might know where he was — my voice was urgent. Adam quieted as he could see something was wrong.

“You should see it, man! There are firetrucks and police cars everywhere. There’s so much smoke you cannot even see down the street,” said my friend when I called her back. She sounded out of breath and I noticed that my hands began to shake. I learned in the meantime that Adam’s dad would land with devastating messages on his Blackberry.

I could not go to the house right away. I knew it was being looked after. I could not go to the house where I moved my toddler-Adam into, now completely ruined. I went later after I gathered my thoughts and courage.

All I can think of since that time are the what-ifs — that stuff people tell you NOT to think about because thank God no one was in the house and everyone is safe, bit. It’s just a thing, some say. It can be replaced. While all of that is absolutely true, I do know that this new house Adam and I moved into rebuilt me. I know intimately, the value of space — how we shape it and it shapes us. I put every bit of my energy and spirit here to start our new lives…and it’s lovely, I have to admit. Adam feels at home here and we two cheerfully snuggle lots on our comfy couch.

Adam felt at home there, too. Adam’s dad and I have managed to keep his routines and environments as consistent as possible. So, we decided not to tell Adam about the fire or take him near the house. It’s not necessary to expose him to such tragedy when environments are so important to him and when he might fret over a disaster over and over like a bad commercial jingle we can’t get out of our heads. Thankfully, he is used to his dad’s parent’s house where they can stay when they are together. In the meantime, as his dad figures out what comes next, we can prepare Adam for his next move.

That’s the practical side of me. There’s that scared sick side, the what if side that is giving me nightmares, and yes, a grateful side that we are content in our new home, and that everyone is safe. It was a a disaster indeed, but a tragedy averted. It has opened my eyes — yet again — to the fragility of everything.


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 (, 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.