A New Beginning

Filed Under (Adam, Estee, Family, Friendship, Love, Single Parenthood, Transitions) by Estee on 15-09-2014

Adam on the move Adam on the move[/caption]

And so we moved again. It has been lots of hard work to prepare Adam for another (and final) move to our now permanent home in downtown Toronto. I decided to put everything aside to prepare him (and our new home) for the transition. This involved many social stories, visitations to the renovation site, weekly pictures and a reassurance that this was going to be a happy move. Our last move was a consequence of divorce and took its toll on both of us.

Adam had lots of positive support and a smooth summer at camp. I prepared calendars, reviewed them, we typed (talked) about moving all the time. I also made a calendar countdown to prepare with a symbolic punctuation to indicate our last day at our house; this involved letting go of four red balloons into the sky. On them I wrote: Mommy and Adam, Hope and Dreams, Bye Bye (address), and New Home.

photo (7)

Before the bus came to pick up Adam early on August 14th, we stood on the driveway on the sunny morning and discussed each balloon then let them go one by one. We watched them float high in the sky – the sun in our eyes – until they disappeared. Adam’s grin was wide and he jumped up and down a few times; my heart was heavy as it was giddy to see how well this was going. Adam seemed to be coping so well… not tearful or anxious as I expected him to be. In fact, I was floored when he typed about the move, “you are home to me.” Now that’s putting things into perspective!

Soon I would let Adam get on the bus and say goodbye for two weeks. Later that day he would go to his dad’s house while I prepared our new home for his arrival. The movers would be there on the heels of his camp bus, gutting our memories – of becoming a new kind of family from the new pictures on our mantel to Adam’s art that would make it our home. I wonder if I had made such earnest preparations to avoid the severe spasms Adam encountered during the divorce move; to avoid the heartbreak we worked so hard to overcome…and succeeded.

I recalled when we made another happy move – when Adam’s father and I built a new house and Adam participated in his weekly construction with frequent visitation to the site. There was one object I had left back in our, what I will call, “Rosemary House” (to do with the location) that I had to return to obtain. I was pregnant with Adam in that house. We had found out Adam was autistic in that house and endured hours of “therapy.” I was becoming the mother I was meant to be. It was old and rickety but it had cradled precious memories that are heritage to me (sadly the house was not and has since been torn down). The object I returned for was Adam’s bassinet which was mine as an infant. My mother worked hard to refurbish it for Adam and it was hand-made by my grandmother. Heritage was at least maintained in this. A light summer storm was brewing in the late afternoon as I pulled into the driveway and Adam, only a toddler, was asleep in the back seat. I left him in the car to quickly run in and grab the bassinet to put in the back of my van. But it was hard to leave the warm inside. There is a compulsion to stay in an old empty house full of memories even when it is stripped bare except for the dust bunnies that appeared like tumbleweeds in the desert. I remember standing in our bedroom, where Adam spent most nights with us, trying to review all the memories in fast-forward. I had to pull myself away to return to Adam, still unaware and fast asleep.

Perhaps we’ve now had too many of those moments ever since. As Adam’s bus turned the corner, the movers pulled in. They worked quickly removing boxes and our house was empty again. I vacuumed and cleaned it for the new owners but also because of gratitude and the love we built in that house. I felt the pull again to linger and remember how Adam and I learned to become our own family unit; how friends became our family there and how my parents Adam and I have become closer than ever. Adam and I did it – we pulled it together in that house. As I felt the tears begin, I abruptly left. It is time to move on…go, I said aloud. Time to move to our happy house, close to public transit and bustling life on the streets… and down the hall from my parents. It was part of my plan for Adam and his future being in the heart of transit and the city for his quality of life. It was fortuitous that it all worked out. So instead of preaching, I decided to lead by example: to leave quickly and look forward while paying respect to our past. Remember the red balloon that read: Adam and MommyHopes and Dreams.

A month later I can write about it. There is more to follow.

Parent/Teacher

Filed Under (Adam, Anxiety, Behaviours, Communication, Estee, Language, Obsessions, Parenting, school, Single Parenthood) by Estee on 07-01-2014

We begin 2014 anew. I have applied for a leave of absence from my PhD study to focus entirely on Adam’s program. In so doing, I recognize I need time to energize myself and have some free time; this is not possible as a single parent of an autistic child if I don’t cut back. So, at the end of 2013, I made the empowering decision to become a communications specialist and educator of my son. I’m making field notes along the way. I don’t do this alone of course; it takes others to assist us. But in Canada where there is a lack of trained specialists in supported communication, this is up to me now. Thankfully I have other supporters and success stories including our own.

With the ice storm, a sudden move to a hotel due to the massive power outages in Toronto, the holidays and general upset at the end of this year, I may have fallen into one of my darkest places. I hate to see my son so upset, so less able to handle transitions. I realize I hate holidays too – there was too much expectation despite the fact that I know that this a sure way to fail. No way, no how next year. One modest dinner and one present…that’s enough and that’s lovely.

Of course, much of this has to do with my own resilience and preparedness. Sometimes, Adam requires more preparation than usual – more social stories, lists, repetition of what we are going to do next. He can be the kind of kid that seems to be rolling along quite well and then he needs exceptional support. Let’s just say this past December he needed way more than I provided. School had exhausted me as well which didn’t help. Writing about the philosophy of language and disability takes a lot of of one when a child’s scream replaces words; they are more commanding. As soon as I turned my attention to helping Adam, he calmed down. His school assisted with what we call “operation calm down” and his environment, demands and work were all reassessed. For Adam, he requires proactive breaks every twenty minutes to return to his desk. His school has been most accommodating in helping to provide these breaks. Eventually, kids who are accommodated are often able to increase their level and time of focus as they mature. If there’s one thing I never stop learning is that changing expectations means that you always have to reassess them.

Adam then had a long break (albeit the first half was stressful with the storm). When he returned Sunday, we had another cold weather, namely the “polar vortex.” Schools were cancelled so I planned the day: a walk before it got too cold to go outside, art, reading and typing (I made a program for that), sensory swing, and computer. In between such a good day, Adam decided he wanted some pretend play so we went with that (lots of language there). There was only one incident when his grandfather popped by and then Adam thought he was going to “gramma’s house.” Adam will tend to want to do things that are routinized and when he found out he wasn’t going, he screamed. I left the room and asked him to read a book to calm down. He did so in less than five minutes, which I thought was pretty good. When he was quiet, I returned to ask if he was feeling better, ready for another scream. None came, but it might have. I told Adam I’d check on him again in a few minutes.

When I did, Adam went through his lists when he knew “gramma’s house” wasn’t an option: “Brunos”(which is a grocery store), “Hero Burger…Burger King…Shoppers Drug Mart…”

“Adam, mom needs a break. I’m going to have a cup of tea,” I said. I decided that bargaining wasn’t going to get me anywhere and I’m trying hard to build Adam’s “no” muscle. I sat quietly on the couch drinking my tea, expecting the whole while that another scream was possible. None came. Soon, Adam made his way up the stairs from where he was in the rec room, and lay flat in the hallway. I said nothing and kept drinking my tea. Eventually, Adam brought a book to the couch and sat with me. We got to the point where I could ask him what he wanted for dinner. If he would scream, I would have sent him quietly to his room not as a punishment, but so he learns about self-calm and what I expect from him. There, he has more books to read, which I feel is a positive way to self-regulate intense emotions and which seems to work for Adam.

“Teachable moments” like these make me feel like a competent parent and teacher, and I think we all need to feel that way. I had prepared, I have been studying to make Adam’s programs comprehensive, and I’m becoming more prepared and working on the more difficult behaviours such as bolting, opening doors, and the so-called willfulness of puberty while recognizing that Adam might be confused and sometimes fearful – helplessly resorting to routinous behaviour in order to self-regulate or find order. It is my job to help him. This is what makes my days feel gratifying rather than worried about him while I sink my head in Barthes and Derrida. While I’m not going to stop reading and writing, I just am going to use what I’ve learned in theory and turn it into a practice.

Yesterday and this morning, Adam was beaming. He was happy to go back to school this morning. Starting next week, I get to teach Adam more communication, typing and literacy, life and social skills. I have begun my leave to do this work. I hope we both have a wonderful 2014.

Where I left off..let me say a few words

Filed Under (Adam, Communication, Estee) by Estee on 08-11-2013

Hmmm, let me see, where do I need to begin again? I am in the mood to just tell you where I last left this blog off, between finishing my MRP, changing Adam’s school and off to the PhD races. I can already see where this will try to pull me in many directions but Adam keeps me focused. He types on his own, but he also increases his spoken words. He is not cured of autism just because he is gaining these skills. It simply represents (if I can use that word) that coming to words, no matter how many or few, is different for all of us. Progress is not linear and I’m skeptical of progress. In terms of the human body, it changes over time. That’s about it.

Focusing on words, despite the fact that I write and defer to them all the time, remains tenuous – open to interpretation. Words are both important in this verbose culture, one where David Abram might say we are conditioned to speech (alas unaware of nature around us and our other senses) whereas Adam and others may be more attuned. If I say that, I am walking a tightrope – I wish to avoid sensationalizing “autistic” skill. Could it be there is a space in between words that we are ignoring more than ever before? Don’t we all tend to say that we live in a world where we feel more disconnected? How ironic the term automatic/automatism/autism; I get up, get in my car behind glass and these actions are automatic and required for work. People honk horns, illustrating a passive aggressive irritation – with other human beings – that may dissolve without the glass, behind computer screens. By stating my observation, I am speaking my hope. This doesn’t have to be, “just the way it is.” We can rethink the way we form relationships and community.

Words are what Adam learns in school, what we teach him through typing, reading. He is strongly attracted to words; he owns that hyperLEXIC label. We find it hard to find the right lexicon to describe our lives within a paradigm of normality, alas devoted to speech. We cannot see the forest for the trees; we are too busy building roads and computerized devices. We are busy proving our minds… and our reason.

Still, Adam is happier. He is being educated in a “real” school, and that only happens with those willing to accept that he still needs a person to help him navigate spaces, other bodies…a deluge of words coming at him in the forms of conversations and instructions. He is with other kids, and he gets to learn. This makes him happy. He directs when he needs to be with others and when he needs his space, and he learns to translate what he knows into the words we need for proof. And I, in a PhD program, must combine lots of words to put to this, in an attempt to move beyond them. In the meantime, I always feel full when Adam is around and there are few words between us. I seem to understand so much about his meaning, and he mine. Silence is full.

Scary Rain

Filed Under (Adam, Estee) by Estee on 09-07-2013

Go Train Under Water

Adam started camp and he has become content again, as I’d hoped.I’m tired around here after another flood in Toronto. Loud thunder and lightening struck just at the moment Adam’s bus came to the house. More than a month of rain dumped on Toronto in an hour.

“Scary, scary!” Adam said, reluctant to leave the bus.

“It’s okay Adam, just come now,” I urged, trying to sound calm as I saw the water billowing over the drain in my driveway, about to flow into the garage. So many things to attend to, but keeping Adam safe and calm is my top priority…but also keeping his basement dry keeps him calm…oh, what to do?!

Although we repaired the basement and Adam was so happy about that, a bit of water came in yesterday, but not nearly as much as the big flood several weeks ago. Then, our power went out and I was so grateful when my handyman saved us with a car battery (I hadn’t even thought it was hooked into the power and didn’t have a battery backup). We hooked that to the new sump pump. As night fell, I was waiting for more rain while Adam was asleep, sitting beside a candle and my transistor radio. I waited to turn the battery on, but alas, no more scary rain came. Finally, I fell asleep with the window open, attentive to the sirens and then, sudden quiet. At 3 a.m. the power came back on and I was only slightly disappointed – I loved the quiet but was glad to be able to re-plug in my sump pump to the power. More rain is coming for Toronto today and tomorrow. Considering that people were stuck on the Go Train until 1 a.m., rescued by boats, and that I saw basement flood trucks running up and down my street last night, I thought that we did all right. Now just some more tweaking, a generator, another sump pump, a deeper well… My water house still needs work.

How I Deal

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

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

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

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

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

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

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

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

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

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

Digging Up

Filed Under (Estee) by Estee on 24-02-2012

William Morris admonished, “Have nothing in your houses that you do not know to be useful, or believe to be beautiful.” Was he ever in a house with kids and a to-do list for an autistic one that seems to run miles ahead of me?

Ugh. I’m obsessed with clutter and yet I’m a secret stasher. My house looks organized, but watch out for those closets and filing cabinets! I like to hang on to everything! As many of you understand, my life is too busy to often think about things, so they get stored. Over the years though, the things in my life grow and gather and I find the closets too full, the toys too plentiful and I’m getting too tense with it all. Even with my autistic child and all the things I have to look ahead and plan for, I want a simpler life!

I look in the basement at all the toys. As is the case for many of our autistic children, baby toys are still comforting. It’s especially hard to toss out the old when, in Adam’s case, it becomes new again. Or for the toys that we were told to purchase when he was in early therapy, I keep thinking that someday, we’ll still get to them. Someone will want to teach him how to use the board games for reciprocal play.

I met Gretchen Rubin of The Happiness Project at the Blogher Conference in New York City several years ago. Her idea of living a happy life is de-cluttering our lives. I had to say that the idea of organizing didn’t make me happy, but the idea of having less to worry and think about does. Today, as I confront my office files and piles of Adam’s artwork before I get to his toy area, I’m so tense that I had to take a break and write this post just to avoid it! Why is clearing the clutter so anxiety-provoking? Why am I breathing heavier? Is it the time I know I going to have to invest? Will it take days? Weeks? What of the many lists and projects might I find that I have left undone? If they are to do with Adam, I’ll feel really guilty — the PECS I made, the schedules, the social stories, the other stories I write and leave in unpublished piles. What if I find out that I could have done more for Adam in all those to do lists that were left unchecked?

Ack. It seems I’ll be digging up more than just clutter.

Return Home From Sri Lanka

Filed Under (Adam, Estee, Travel) by Estee on 31-01-2012

I have serious jet lag. I returned on Saturday, after supper time. It was a journey of thirty hours. The route home was Colombo-Bankok-Beijing-Toronto. On the last day, I realized I caught my first Sri Lankan cold and I suffered all the way home, making the thirty hours feel like sixty. Seriously, you can’t tell the difference after the first twenty-four.

I returned home to my cherub. Adam was waiting for me and the transition from his father back to my home was a happy one. I was worried the little guy would be pissed with me for being gone twelve days. The opposite was true. I tried to avoid making face-to-face contact with Adam, since I had come down with a serious sniffle, muted by a continuous in-flight feed of Contact C. He would have none of that. Adam grabbed my face, our round fleshy cheeks squished together, and he continued to kiss mine all over. Ah well.

We are happily reunited and I am on the mend. I woke at midnight tonight and forced myself to say in bed until three this morning. There is a wisp of white snow on the ground and I gather today will be another gray one. I am recalling all the sights and sounds of my trip, especially the warm light and emerald colour of rice patty fields.

I will send my cherub off to school in a bit. Later, I will hopefully find some words and sentences that do justice to my first trip to Asia. In twelve whril-wind days, major flight time, and time zone changes, I still feel silenced by overwhelming differences. My experience is still blend of flickering images and sensory recollections. As I blend back into my daily life here, I realize it will take me a few more days to articulate what I’ve experienced. I know full well that I’ve only taken a small sip of the land of Serendib.

Reflections On Our First Decade

Filed Under (Acceptance, Adam, Advocacy, autism, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism Theories, Autistic Self Advocacy, Discrimination, Estee, Ethics, Family, Joy, Single Parenthood) by Estee on 11-01-2012

Tonight Adam asked to be carried to his bed. “Carry!” he implores. He has a determined look in his eye. Usually, he climbs into my lap and expects me to carry him to his bed. So I let him again, and cradled him in my arms, trying not to hit his extremities in the doorway.

“Adam, you are getting too big for this now,” I say, my neck and back feeling strained. I carry him into his bedroom and plunk his heavy body on the soft bed.

“I’m not a caterpillar anymore!” he says melodically, and smiles.

“That’s right Adam!”I am pleasantly surprised. It is a rare lucid statement. With all his movements and chants, for the unexperienced, it is difficult to believe Adam is understanding, or paying attention to, many things. Yet I’ve always known he does, even on the days I get frustrated when he can’t respond.

There is a story that Adam The Caterpillar and the Polliwog by Jack Kent. He is using the line from that story and I know he has associated my discussions about him becoming a big boy to the story. “You are not a caterpillar anymore. You are a butterfly!” Adam lifts his head from his pillow. With a big smile, he plants a kiss on my lips and lies back down, contented. I turn out the lights and say goodnight.

I’ve been thinking a lot about Adam and his growth over the past year. Over the New Year, I’ve been thinking how this will be Adam’s first complete decade, and my first decade as a mom. I simply cannot believe that it’s been that long as I remember our journey with autism and with each other.

Adam was diagnosed with autism at 19 months of age and I began writing privately in coffee shops about our experiences when Adam spent a couple of hours in pre-school. I started The Joy of Autism blog and running the events of The Autism Acceptance Project when Adam was three years old. Reaction to my blog and title of the events (The Joy of Autism: Redefining Ability of Quality of Life) were met with both applause and contempt. Today, we read about the joy of autism and parenting an autistic child much more often. Then, parents who were struggling with challenging behaviours and expectations of a cure, challenged me. What did I know?! questioned many parents of slightly older autistic children who were being phased out of services. Wait until your autistic child grows up, then you’ll be in big trouble; you’ll see what we are going through. He won’t be cute forever! I suppose we’ve now reached that same stage. While Adam can still be cute, he is quickly becoming a pre-teen.

In the past decade, we have struggled with acceptance, understanding from others, and in finding a great education. We deal with stigma, and having to justify why we behave as we do. As parents, we are sometimes pitied or called heroes. It’s hard to be a normal parent in the “outside world,” even though autism is our normal. Having to justify our children, and their right, need, and desire to be included can be exhausting if not downright heart-breaking. We keep going out there every day as we brush disappointment off our weary selves. I suppose this is brave.

I also realize, that as bloggers, writers, and advocates, everyone has an opinion. When there is no one cause for autism that science can find, the speculation gets polemic. The nexus of contention seems to be the nature of autistic being and intelligence; is autism a natural, “alternative” way to be human, or is it a defect of the human condition? Of course, I believe it is what it is, although throughout the years I’ve always questioned my own thinking. I still come back to the value of human diversity. Whatever the reason or the cause, I value Adam for who and what he is, how he thinks. I also recognize and try to assist his challenges. I cannot call him a defect. He is whole, loving, able, with his disability. I can’t think of my life without him in it. He requires the extra effort of all to understand his differences in order to enable him. Being constantly challenged for my beliefs has been exhausting and emotional at times. The blessing of this first decade has been the deeper recognition and understanding of the values I held instinctively, and early on.

In the past decade of writing and talking about Adam and autism, I’ve been torn between sharing parts of our experience and our privacy. In the hopes of helping Adam’s future, I’ve seriously thought about whether or not to close the blog, especially since Adam’s first decade also included a divorce — a challenge for any child, and an extra challenge for Adam. I decided that not only does writing about experience help me as his mother, but that sharing is a gift we both give and receive. I was helped by the writing and sharing of other autistic people and parents. I don’t want to fear the sharing, although I’m continually challenged by this. Of course, it is my duty to protect Adam and his privacy, so I believe that every parent must choose our stories carefully. I’ve decided to continue writing.

I also can’t help thinking about the parents who had autistic children ten years before us. Many were the parents in Canada who argued for ABA to be covered as medically necessary treatment (the political argument still exists). Some parents found out about Dr. Lovaas in L.A. and even moved down with their children for treatment, and I may have done the same thing if Adam had been born earlier — maybe not. Adam was born in 2002. In 1992, ABA was turned to as the hope for the education and life skills training for autistic children. It was believed that ABA would be the way to shape the child’s behaviour and normalize them, in time for school. It seemed much more humane and reasonable than “holding therapy.”

The window in which to do this, they were told (and we were too) was five to six years of age. If a child could not talk or learn normally by then, the window of opportunity would close. The “early diagnosis is key,” notice, is also used for cancer, and I know from personal experience that yes, better to get a cancer early (another part of our past decade). Science, parents, autistic people, however, have proven that there is no such thing as lost opportunity. Autistic people need continued life-long learning. I like to think of that all of us require continued training throughout our lives to put this in perspective.

New methods and teaching approaches have been explored and integrated into many classrooms. ABA therapy has, to some extent, integrated different therapies into their own practice. By “operationalizing” these other methods and taking “data” it seems to have been rebranded as “Positive Behavioural Therapy” or “Support. While there is still controversy there because the therapy still doesn’t fully address the abilities and the nature of autistic perception and intelligence, one could view it as a step forward.

It is also difficult to let go of labels. Political policies are built on them. They are made for autistic people largely by non autistic people. Definitions and systems must be defined in policy, and this has been difficult for autistic people because their issues have not fully been acknowledged. So we must be cautious not to lose sight of the progress have made in the science regarding autistic ability, perception and intelligence. We must continue to work to answer the question on how we can best educate and address an autistic person’s needs, and how an autistic person can participate in society as they are. The dyslexic community had to learn and now so must we.

Ten years before ABA took hold in Canada, in 1982, Lorna Wing wrote her pivotal paper reviving the work of Hans Asperger and spotlighting Aspergers sydrome in her paper, Aspergers Syndrome: A Clinical Account. It was ten years after that paper that Autism Spectrum Disorder label and definition of the “triad of impairments” made it into the DSM IV. In thinking about decades, I thought back to 1972 when Ontario’s last mental institution was shut down. It freaks me out to think that Adam’s life could have been so very different thirty or more decades ago. He would have been even more segregated than he is today.

As I measure the decades against autism treatment, and treatment of autistic people, I see that in 2012, we’re learning more every day. We do so even in a perilous time when “designer babies” arguably threaten the continued existence of people with disabilities. Many communities like ours and the Down syndrome community grieve the loss of others “like” them as a loss of community. We’ve launched autism acceptance movement, akin to other civil rights movements, for the equal and fair regard of autistic people in our society. It is still a nascent movement of which most people are unaware. We have not accomplished full inclusion and accommodation. We still have not raised enough awareness.

As I think to 2022, when Adam will be twenty years old, I hope for the ability for Adam to continue his education and the welcoming of his assistants not because he is unable, but because he can be enabled with them. I want for his participation in his own life planning, pre-college/university prep, and vocational training that will be unique to the needs of him and others like him. I think of his life, like mine, as a continual learning curve — certainly not ending at the age of twenty one. I watch and read the other parents and autistic individuals ten years ahead of us, and wish to thank them for the paths they are forging.

I look ahead to the next couple of decades. There was a time I fretted about it until I realized that time is relative and all people develop as they should. I worried about Adam’s future and where he would live. Yet, I intend to hang in there with him, come what may. I had some very difficult moments after my divorce and raising Adam here alone and this is when my worries were at an all-time high. On one very low day, a calm and quiet thought suddenly entered my head, and it was filled with love. While autism may have brought me some of my greatest challenges, it has also bestowed my greatest gift.

I love Adam more than words. He has always been my pride and joy. I know that it is my duty to assist him, and to find others to assist him along the way who will help him become the man he is meant to be.

Maybe I just can’t believe he’s going to be ten years old this year. I turned on an old video when he was first diagnosed. He is twenty months and has the same smile, the same boundless energy. He is the same boy in a growing, lanky body. He is a butterfly.

Off To Sri Lanka Soon

Filed Under (Estee, Parenting) by Estee on 07-01-2012

I am leaving for a trip to Sri Lanka at the end of this week. Travel is something I’ve always done, and now that I’m divorced, Adam goes to his father. I’ve always been a traveler, and Adam has been a traveler because of it. He has been to quite a few places for a little guy. I remember my first trip on an airplane was when I was nine years old. My grandparents took me to Germany for the first time. Adam is going to be ten this year and has been on an airplane every year since he’s been a baby. I always advocate taking an autistic child places, no matter where, with readiness and preparedness. I’ve always packed a special bag for Adam and I talk him through every aspect of our travel. These days I get compliments just about every flight: “I’ve never seen a child so well-behaved.” I want to laugh and announce, “and he’s autsitic too!” People don’t expect autistic children to be well-behaved on flights. Yet I’m working the entire flight by anticipating all of Adam’s needs.

Traveling is mine. It’s an interesting feeling — being excited to go halfway across the globe, being so far away from home in a completely different culture. I also know I’ll miss Adam as much as he will miss me. I will send him pictures of myself as I always do, prepare a calender of days until mom is home, and talk to him once in a while. These feelings do not stop me from persuing my interests now. I know I am a full-on mom with him and doing my best. I know that it is also important to let children go to manage their own feelings. It’s a good lesson to let children know they are not being abandoned — that parents can go out for dinner or on vacation, and will return.

I know I have to calibrate, to have this time to do what I love as much as I try to nurture what Adam loves. For some people it might be a hobby. For me it’s Wanderlust and food for creativity, writing and perspective, and even parenting Adam.

So I’m about to journey. I’ll miss my little guy, but as in a small of resemblance to mom Rahna Reiko Rizzuto, who wrote Hiroshima In The Morning, it is my need to fulfill the other bits of me that need filling. I really appreciated the way Rizzuto was honest. I feel the book is important in redefining what mothers are expected to do as opposed to fathers. She continues to be a good mom to her children — something the press failed to really discuss in the whirl of controversey — except that her arrangement is more like a man’s. She sees her children once a week and every-other weekend. I’m not at all suggesting I do not wish to be a mother by mentioning her book. I wanted Adam so badly and I continue to want to mother him. I think her book is important for women to read, though, in making sure that we don’t lose sight of ourselves.

A man would not feel so guilty leaving his child for work or travel. A mother on the other hand, feels compelled to write a blog post like this one.

Adam and Estee on Writing

Filed Under (Adam, Communication, Estee, Writing) by Estee on 17-11-2011

I haven’t written in a long time. Since we changed schools I decided to focus solely on Adam. I’m also very cautious of what I write about, because while it’s important for me to do this, it’s important to protect Adam’s dignity as he is maturing fast.

We made the official switch to an ABA school. Frankly, it was getting exhausting trying to find an inclusive school to support Adam’s needs. Adam needs understanding, lots of structure, lots of practice for the work that’s difficult for him, and people who greet him every day with a wide smile. I have been struggling on how to write this because I’ve been so critical of ABA. I have come to peace with this decision for now. We didn’t have good early experiences. I’ve learned that it’s not just some ABA therapists who didn’t accommodate or treat Adam with respect. Understanding autism, accommodating, accepting isn’t reserved for the non ABA teacher. Maybe times are changing.

Adam has Occupational Therapy equipment and goes to the gym every day at his school. He gets his sensory breaks. He uses a Vantage Lite and now the iPad — from the notebook, to text-to-speech for typing, which he is doing more independently. He also enjoys using the Vantage Lite. Adam also started using the Vital Links headphones which help him be able to calm his body and sit at a desk and do work. This works by choosing various MP3 music chips. He can sit and work and still hear and listen to his teachers. It’s a much better option than the Ritalin we once tried in his other school — a nightmarish experience.

After June, Adam went also to a new camp. We lost our aide worker of seven years. For the first time I had to let Adam “go.” I had to learn to trust that others would treat him well and I had to trust that Adam would rise to the occasion.

He did, although his new obsession with exploration and doors took over. He typed to me in the summer that “door is a question.” A question so powerful, in fact, that sometimes he seems to have little control over his insatiable curiousity.

We incorporated exploration time at the end of each day, with supervision. He was still adored at his new camp as he was at his older camp. Both camps are fully inclusive. He needed a bit more support after incidents at the end of his the year at his other school. I called the summer “operation calm down” as Adam was highly stressed and the door obsession began. As the summer unfolded, he calmed. By the end of it, his ability to speak reliably soared in ways we had not yet experienced. He was relaxed and happy and of course, we always try and type a little more each day at home since he got his iPad.

This was the biggest change in Adam’s communication — his verbal ability increased and between typed and verbal, I could trust that what he said, he meant. Instead of echoing or saying things he learned elsewhere, Adam began telling me real things and he still does — from how he is feeling, to what happened to him, and what he does and doesn’t like or want. Some days I will get an interesting full blown description of something I didn’t quite ask for, with language full of imagery that I have to interpret, which gives me clues into the way Adam sees things. I have asked the school to verify things I do not know, in order to test myself as Adam’s communication partner. I am always trying to ensure that I enable Adam by testing myself and watching for his cues. I am a work in progress.

Adam writes emails to me every day — something I still insist as part of reciprocal communication (and a safety necessity in my view). Yesterday, he independently wrote me that his tummy was sick. I had to call the school to verify and the senior therapist ran down to check on him. “Isn’t this a wonderful call?” I said. Sure, my son could have been barfing, but hell, he could tell me! Adam is assertive when he can speak. I can see more clearly now that he has a fighter spirit.

Yesterday, Adam was unusually upset in his OT appointment and I had to intervene. I brought in the iPad and he typed “I want dinner!” As he typed, he said the sentence before he finished typing the word dinner. When Adam is anxious, like so many autistic individuals express, it can be harder for him to access language. Sometimes it’s not, so there are no clear cut “rules” here. Yet, as soon as he was able to have access to the device to type, he immediately calmed down.

The same thing happened this morning. He was quite upset. I brought out the iPad to type on the text to speech application, which he really likes. I asked him if he was feeling tired or sick. He wrote back, “No school because I tired.” He smiled because he obviously feels more empowered when he can tell me what he really wants to say.

I get asked a lot from parents on how I taught Adam how to type. Believe me, I was criticized by people who believed that supported, or facilitated communication, was a hoax. I simply kept it up (I started when Adam was around four years old). Now Adam can type unsupported most of the time. My priority with his school is following up with is literacy and unsupported typing. At home, we play poetry games and type in the nuanced ways that are difficult to explain without writing it out in a longer essay or post. It is always best to see Adam and I doing this a few times to see how varied it can be.

Today, I promised myself I would write again, and I’m enjoying writing about Adam’s writing, which is much more interesting than mine. Sometimes I feel that I am climbing a never-ending mountain when I say it is Adam’s neurology, not behaviour, that make it difficult for him to communicate and do tasks consistently. So I stopped writing and talking for a while and just lived our lives. This is one of the reasons I had to take a break. I needed to be with Adam, go through all the changes, and just be.

So far, I like what I see as Adam happily runs to the school door every morning. We went through some difficult days with certain ABA therapists when Adam was a baby. It is now, as he’s older, that I see that consistent practice is important and helpful to him, as well as a structured day that he can predict and have some control over. For Adam, I am still convinced that the early engagement was very important through a play-based method. He always had a combination of methods that are currently out there. Being with other children was wonderful. I wish he could still be with all kinds of children, of course, especially since he typed a couple of weeks ago, “I want friends.” But when schools do not fully understand and accept autistic kids, I had to pull back and ask myself where Adam might be treated better. In this case, he’s in a place where the staff seem open minded and we work together on planning Adam’s programs and various teaching methods. Adam’s extracurricular activities include now skiing, a Friendship Club, piano lessons, and an art class.

I am hopeful because I know that Adam will progress because of maturity and because of finding the environments, support and methods that best suit him, and these may or may not change. I am also hopeful for myself that be it good or bad, writing and talking about Adam in respectful ways is still very important to how I support myself as his mother. Both Adam and Estee find writing really important, and I know Adam would tell you so.

Every parent has a dream and an expectation for their children, and expectations never quite turn out how we envision. I always had a dream that Adam and I will tour around and he will be able to tell you many things on how he grew up and learned all by himself and I can talk about the journey I took to try and help him. I can imagine Adam and writing to each other, because that’s what we are doing! Maybe soon I’ll find the energy to show you. I believe Adam the fighter will want to show you for himself.

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.

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.

A Skeptic’s Snowday

Filed Under (Estee) by Estee on 02-02-2011

Just as I thought. The news made a big hoopla about a big storm. As I predicted, we never got the snow they predicted. In fact, Adam and I are about to go out for a walk.

Seems the news is full of hype on all counts, whether it be about autism or the weather. Weather is big business. Except for the Tsunami in Indonesisa. We needed the news reports then. But they never came. I hate being skeptical. Yet everytime The Weather Network predicts weather, and this comes from undocumented personal research, it’s always less severe than they say.

In the meantime, I’m happy to report that after writing my post yesterday, after a while on waiting lists (we’ve been a year on some and still no word), Adam will try his first ski program next week.

Just a another day in the life of a positive skeptic.

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About Me


ESTÉE KLAR

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