Where are we?

Filed Under (Adam, Advocacy, autism) by Estee on 28-07-2015

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“Entrance is funny because it reminds me of the love of people. It is easy to enter love through an open door.” – Adam Wolfond

As a part of my duoethnography project with Adam, we are on Facebook for now. For many reasons, this seems like the safe space he can communicate and Adam and I will be presenting at our first conference together this fall. We have also started our new school, which we are very excited to say more about later.

There are times when advocacy needs to take different forms, where the current form isn’t serving as well and where, I feel, certain binary arguments continue to perpetuate the cycle of exclusion we are experiencing today. I also feel there are so many autistic self-advocates that write important blogs, and these are important resources.

We will be back (soon) and are around in many creative ways that foster social justice and the kind of inclusion that doesn’t continue to force a mainstream will (or a curist approach to being remediated before being included, which we feel is unjust). Our project has much to do with how we communicate with each other, about how Adam feels about his disability, and how I explore the interactions and ethical dilemmas between parent-child interaction, relationship, support, interdependence and justice for folks with disabilities. I could not write an autoenthnography about being a mother to an autistic child because in my view, we have an overabundance of research about the parents and their stress that expenses the lives of autistic people as “burdens.” The top-down approach to research has been cited numerous times as problematic and I take this to heart in my own doctoral research.

Adam and I are exploring this together in multiple ways (not just language-based ones) that will hopefully contribute to the way we think about community, school, inclusion and participatory research about autism. We will return to writing at this blog site and for now, we “exist” as mutual explorers on Facebook where Adam “speaks,” and where we draw and comment too. So this is just a short note to say we are alive and well and… we’ll be back.

This is Our Halloween

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

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

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

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

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

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

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

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

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A New Beginning

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

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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.

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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.

Moving along…

Filed Under (Adam, Advocacy, Anxiety, Communication, Community, Inclusion, Intelligence, Living, Movement Disturbance, Obsessions, Sensory Differences, Transitions, Wandering) by Estee on 17-03-2014

There are times when you have to just stop everything. Adam has required it…his school has required it. A focus on Adam’s typing and adaptations in school have alas been paying him dividends. Despite his want for escape, screaming and bolting, Adam has been in cognitive behavioural therapy and we’ve been working on his accommodations in school so much so, he is literally whipping through his academics – I know this is the tip of the proverbial iceberg. Sensory breaks every 20 minutes enable Adam to focus and he has an array of self-help tools he can now choose for himself to calm – from stretchy therabands (his fave), to signals that he can verbalize “the body needs to move.” His penchant for routine and doors is akin to panic attacks. It is important to give Adam concrete options to move from one thing to the next. His will is strong as is his intelligence and everyone who knows Adam must try to help him by staying two steps ahead of him at all times in order to respond. Or, as I do now, I also ask him what he needs:

Me: Adam, what I can do to help you around when you have the impulse to go through doors?
Adam: You can help by staying calm.
Me: What do you need?
Adam: Hard to move forward. Really hard to tell.

So we will work on it and Adam is beginning to communicate his more complex needs. Here in Florida (for Adam’s March Break), the building security guard came by and noted when he saw Adam in a moment going through doors with his “help,” he could recognize it as a panic attack right away because as a young person he too had panic attacks. This is what is like for Adam when it’s happening. For now, I ask him to sit down and try hard to get him to focus by typing. When he is able to think and redirect his thoughts to communicate, we can better negotiate our next steps. It takes time, so when we have an agenda, it just won’t work. We need to be prepared to spend an extra 20 or 30 minutes helping Adam to the next step because he could be literally “stuck” in his loop/OCD and tics, or needs that long to get his words out. But when he does, it’s so glorious to see him gleam with pride. It’s so wonderful to be able to negotiate now with my son! Our days are more rigid than they used to be; Adam needs his routine. And I am finding the balance, and keep asking him for knowledge on how to help him. It’s a team effort.

And as for that building security guard? Well, not everything has stopped…I began the thank you-note project – a new form of advocacy for Adam and autism. Every time someone helps in a positive way – by standing back and letting us be, to a nice gesture or comment, and letting us be a part of the community despite challenges, they receive a thank you note from Adam and I. People need to know they are doing the right thing by letting us be a part of our communities and advocating for what we need. It may not be a big glitzy campaign, but it’s something that we feel good about… reaching one person at a time.

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.

Why is Seeing, Believing?

Filed Under (Adam, Anxiety, Behaviours, Communication) by Estee on 21-11-2013

I learned another lesson tonight. Adam has had a few difficult days. He was complaining last week that his ear hurt, and I thought maybe he had an ear infection. I took him to the doctor who suggested it could be his 12-year-old molars coming in. I was still worried; I thought the dentist told me they had already come in. A few days passed and Adam wasn’t eating that much. His body began to twitch and spasm more. Yesterday, he placed his body under the cushions of the couch, wanted to watch a Baby Einstein video (as opposed to Shrek or Wall-E) and I knew he needed comfort. These are the things he will do to get it. I then suggested a bath and he headed for the stairs.

Once he got to the front door, however, things were out of place. Adam spent time picking up his coat, and placing his shoes just the way he wanted them and did it again and again. He was stuck in his loop. Then all of a sudden, he layed down on the floor on his goose-down coat and began to scream, biting the fabric of the sweater that was laying beside it. The blood-curdling scream broke my heart. I sat at the top of the stair, where I was waiting for him, calm and quiet. “It’s okay, Adam. I’m right here.” Adam let out a few more screams, but they didn’t last too long. I called my father to come over as I didn’t know what was going to happen next. Grandpa is one of Adam’s favorite people and I thought it would help. But Before Grandpa arrived, I came down the stairs and sat at Adam’s feet. “I’m right here. It’s okay.”

“Okay,” he said in a distressed voice.

“Do you want to move to the couch?” Adam seemed uncertain, needing more of my help to get him there; he got up walked half way down the hall, then back, unsure of where he needed to land.

“Come to the couch,” I repeated. Adam laid down and I sat at the edge of his feet with my hands on his legs. “I love you Adam. Everything’s going to be okay,” I said in my Zen-mother voice. My entire body wanting to absorb the knotted energy around him. I smiled at him lovingly and he smiled back.

“Hand is hurting,” he said looking straight into my eyes.

“Oh, I’m sorry your hand is hurting!” He leaned back and then sat forward again.

“Hand is hurting,” he repeated, holding it out for me.

“Yes your hand is hurting. Do you want me to kiss it or blow on it?”

At that point Grandpa arrived, also quiet and calm in Adam’s presence. Adam lead him to the basement where they typically hang out together. Soon after he came back upstairs for a bath and went to sleep.

This morning on the way to school, Adam sat in the back seat in the car and declared, “tooth hurting,” while pointing to his front tooth. When we arrived at school I checked but couldn’t see anything wrong. Adam had a fine but reportedly cuddly morning with his assistant. She said he became increasingly twitchy. Adam had said “yellow” which is what he has learned from the 5-point scale which symbolizes levels of distress. His assistant immediately took him to the sensory room. Adam began to tell her that his back, bottom, nose, were hurting and indeed he had a nosebleed at lunch time. When I heard he was pale and sweaty, I decided to fetch Adam early from school. Upon hearing about this, Adam assumed that he would not be able to go to circus arts where he is coached in the trampoline and began to scream. I texted (much of this conversation was happening by text) his assistant to say no, we were going no matter what because he had been asking for it all week long.

Adam did well the first half of the session and then let out a yelp. His coach put him in the silk swing until he yelped again. It was time to go home.

Nearly in tears for the way my own body responds to Adam’s distress on the inside, Adam yelped again in my car.
“Adam, I need a word please. I don’t understand screams.” I was expecting protest but Adam was quiet. When we arrived home, he again had a meagre appetite, unusual after rigorous exercise. He again placed his body underneath the cushions of the couch. He then showered and then yelped in his room. I suggested we brush his teeth, and when we did I noticed that a tooth had broken through the skin.

“Oh Adam, poor you. You are in pain!” Adam smiled from ear-to-ear, probably relieved that I finally understood what he had been telling us all along. I hugged him.

“Tired,” he declared as he climbed into bed. “Daddy hurt.” I figured he wanted to tell his father that he was in pain.

“Do you want to call daddy now?”

“No”

“Do you want to see daddy tomorrow?”

“Daddy tomorrow.” That’s an affirmative.

So as I think this through, when Adam says he’s sick and many of us just think sometimes he says things that don’t mean anything, I consider how much MORE listening we all have to do. Why do we need proof? Why do we need to see a tooth is hurting to believe it? I’m not suggesting that people (or I) don’t listen to Adam,but that Adam seems to need a lot more time and affirmation to feel comfortable as he passes through pain. Even for all the words Adam mustered to communicate how he felt, to get help, we didn’t see it and we didn’t know quite what to do for him. It’s not that we didn’t try to be helpful, or that we didn’t go to the doctor, but we beat ourselves up about Adam and his “behaviour” almost to the point of wondering if it had any function at all. Another lesson learned: We don’t always need to see to believe and Adam did the job that we always tell him to do. He communicates like hell.

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.

Back to School 2013

Filed Under (Acceptance, Adam, Communication, Identity, Joy, Love, school) by Estee on 03-09-2013

It was back-to-school day. Adam started his new inclusive school today. It was not unfamiliar; he had been there two years ago. He had a great day and was typing very well. Adam was happy when I picked him up and was apparently glad to be back with the big kids at lunch and recess. In the meantime, I’m up to planning the rest of his programs, and my own. I am due to defend my thesis this Thursday and if all goes well, will start my doctorate and teaching assignment next week.

As I opened Adam’s bag this evening I got a new kind of homework that I was most delighted to find – I was asked to tell the teacher about Adam. I was asked to write in a circle about what Adam likes to do as well as answer questions such as: Who is he? What does he mean to you? What are the things about him that I should know? I was just thinking again the other day how, just because are kids have this label we name autism, that our children inherit an identity that does not belong to them. I mean, how often are we asked to talk about our children in positive ways (for lack of a better word)? Aren’t we typically asked by therapists what our kids like for the sake of using them as reinforcement as opposed to knowing who our children are? And what about knowing our children as people first? In thinking about the year ahead, I’ve spent much time over the summer pondering all the things that Adam is, what he loves, what he is good at, and what he brings to his family and to the world. Then surprise! I got this “homework” in his backpack today. Needless to say, all that thinking about what Adam is, as opposed to what he isn’t, helped me to fill the circle quickly. I’m so glad someone else sees the value of this too.

That Loving, Fellowship Feeling

Filed Under (Adam, Family, Friendship, Inclusion, Joy, Living, school, Single Parenthood) by Estee on 05-08-2013

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Adam and Nolan lunch

This is Adam’s best friend. Aside from going back to camp this summer, which he is able to do with an assistant, this is the friend who Adam spends time with. We recognized it was a real, unscripted friendship when the two of them preferred to play without words, to roll around on the floor, or when Adam would lead his friend around the house to show him things. His friend is verbal and not autistic and seems to understand and have compassion for Adam, and I believe the feeling is mutual for Adam towards his friend.

There have been lots of events this past week, most importantly the decision to send him back to the school he attended two years ago, which is not an autism school, but a school for all kinds of wonderful kids. Adam had good friendships there; we could make adaptations in the way work was presented; he could show off his skills and he especially enjoyed the mentoring program when the older kids would teach him. There, he made lasting friendships that have stood the test of time – the same friends attend his camp, and they enjoy each other’s company. His typing stories is getting stronger this summer with our daily practice, and helping Adam with schedules and learning to be patient with me (I’m a single mom… I need his patience) is another important lesson he’s learning with success. Let’s just say, I’ve made these things my mission and I find when I attend to them carefully, we generally do well.

Here’s an example: Every weekend, he wants so badly to go to his grandparent’s house. There, he is soothed and served by my mother. My father gives him strong hugs and takes him on his long walks and subway rides. How could he not love the attention and understanding he receives there? (In fact, he loves them so much, I’m going to ask the TTC if they will take us on a special learning tour). If I don’t take him and I don’t have a plan, he had been getting quite distraught with me. I decided to let it be. I broke part of my foot on Friday and couldn’t do everything he asked. This prompted a teaching moment.

“Grandma’s house,” he demanded on Saturday, looking at me with determination in his eyes. I was a bit nervous he would bite his wrist if he got angry with me; he wears a chewy tube or heart around his neck so if he’s inclined to do so, he will choose that now instead.

“We can’t go today. We’ll go tomorrow,” I said, thinking whoops – that’s an abstract concept and I’m not sure if tomorrow could wait. What is tomorrow when we want it now? I tried making a calendar, and since he can read – I simply wrote in the plan for the days. We went through Saturday, then Sunday…

“Grandma’s house,” he said again emphatically.

“Not today. First we will eat lunch, then we will go for a drive,” I declared, thinking of my foot. Adam got out of the chair, he was sitting in, and I wondered what he was going to do next. Then, he walked towards the rotary phone I bought – to gain his interest in making telephone calls, since he seemed averse to talking on the phone. He picked up the receiver and began dialing. I quickly held up grandma and grandpa’s phone-number, just to make sure we weren’t calling Australia. He put his finger in each hole and dialed each number carefully. He began speaking into the phone, without my assistance.

“Hi,” he said quietly.

“Adam, may I listen?” I asked, knowing that my folks weren’t likely to be home. Sure enough it was the answering machine. “Okay, they’re not home,” I said to Adam. “Let’s call grandpa’s cell phone.” I held up the number for him to follow again and dial.

“Hello” he said into the receiver. Again, I did not know what was being said to Adam, or if anyone was even there. “I’m fine,” he said again. “I love you….can… I… go…to…your…house?” he asked softly, speaking each word deliberately.

“Adam,” I interjected. “May I please speak to grandpa?” I took the phone from Adam to ask my parents where they were and indeed, they were not going to be home. I asked if they would please tell Adam themselves (they were in the car on speaker phone).

“Tomorrow” I heard Adam say softly and he began to whine. “Bye.”

I was elated that Adam made his first phone call by himself. After that, we were able to follow through with the day without a hitch. I asked him if he wanted to go for ice cream, it went so well.

“What flavour do you want…raspberry?” I asked.

“No.”

“Lemon?”

“No.”

“How about chocolate?”

“No.” In fact, if you’ve ever watched Gumby,you might recall Mr.Nopey, from which Adam has earned one of his many nicknames; you’ll just about get the right intonation and speed of Adam’s replies.

I waited for a bit. Then Adam declared…”White!” I realized that someone told me he had tried lemon once and really liked it.

“I think white is lemon, Adam,” I said.

We drove to the frozen yoghurt shop and indeed, he loved lemon.

So today, with my broken foot, I sent Adam along with his friend to Canada’s Wonderland where they shared rides and won a couple of prizes. I’ve been thinking of the typing, the relationship we share when we do it together, preparing Adam the way he needs to be prepared, and Adam’s strong desire to connect. I think when I spend more time with Adam typing and sharing, and when he can spend more time in sincere relationships that aren’t always highly verbal and difficult for him, he is a happier kid. Then, as I finished my Master’s Research Paper (more or less) today, I was thinking of Larry’s line in the movie Wretches and Jabberer’s when he speaks to Tracy about their trip to Japan and Sri Lanka, and they’re in dialogue about how nice it was that they traveled together: “Larry loops twice on that loving fellowship feeling.” Indeed, there is something about the summer that triggers these feelings -perhaps it’s simply more time – and I’ve learned how important these feelings are…all year long.

“We Are A Critical Mass of Wretches” – Larry Bissonnette

Filed Under (Acceptance, Adam, Communication, Computing/iPad, Development, Inspiration, Joy, Uncategorized, Writing) by Estee on 16-07-2013

I am blissfully tired after our second day at the Communication Institute in Syracuse. This is Adam’s first autism conference and all that stuff that was happening beforehand has abated. He is happy here and spending time in a workshop in the mornings learning more skills, and sitting in talks for the rest of the day, and taking small excursions for his breaks. He has watched other typists here intensively and this always inspires him to do it. I’ve learned that he needs less support than I had been giving him, given the right tools, keyguards, anti-glare screens… I’m learning about iPad apps that will change his life and change the way we “do” school…not that most schools (most using ABA/IBI for autistic kids) in Canada understand or provide as of yet. Adam can’t be normalized but he is a very bright, very autistic, very wonderful and intelligent person.

One thing that really gets my goat, however, is the notion that there is no real purpose in teaching autistic people how to type, use AAC, or engage in an academic curriculum. It blows my mind that these things are under threat for autistic people – that communication tools risk being taken away in favor of verbal behavior, which, of course, harkens back to Oralism – when the deaf culture were denied sign language and were forced to speak and act in normative ways. We can look at Victor of Aveyron (1788-1828) for this under the tutelage of early behaviorist Dr. Itard who later abandoned Victor (although Victor could read and use text). Alexander Graham Bell also favored Oralism and it existed well into the 20th century. Today autistics face a kind-of Oralism in Verbal Behavior programs. It’s not that we don’t want our kids to speak if they can, but most autistic folks can’t speak for a full day or not at all and need other reliable sources of communication. These tools for autistic people are a right as sign language is for the deaf, and considering we are asking autistic people to communicate normatively, and autistic people say that they need this means to articulate their thoughts, it’s a complete mistake to even think of taking this away from people.

Society, in the general sense, doesn’t find that many autistic folks are economically productive enough to invest in them, so instead they are called the burdens on society. I’d like to invert that notion of what a burden it is for all of us to be underestimated and only be taught for the purposes of being the cog in a corporate wheel. May I suggest that we all be creative in thinking about the various kinds of purpose and contribution that humans can make, and rethink “productivity.” Then, I’d like to suggest that parents of autistic children who want their children to be accommodated, educated and literate as autistic people to adopt the mantra of those who doubt our children, “so what?” In other words, I think we need to develop a sense of entitlement when it comes to supporting autistic rights to communication tools, access and accommodations. We have to say “so what?” to being autistic, or our children being autistic. It’s a material reality that normative culture is a majority culture to which autistic people work so hard to adapt, and I think of the terrible injustice it is that autistic people have to prove their value and competence every single day of their lives (and often get held back because of it). I think the mantra “So what?” helps me to keep going against ignorance when people ask me why bother educating Adam as opposed to remediating him (before the right to participate or inclusion) or just teaching him functional skills. We are here, literally, among the “wretches,” and there are quite a few here, folks. The critical mass is growing and we ain’t no epidemic. I don’t care what you think of Adam and his going to school or later, university. Just don’t take away his right to it. As for the wretches, they are doing a magnificent job in advocating for this right, and we have an obligation to support them.

Now I will turn my post back to Adam. He was proud of this little story he wrote today which was read aloud to the class – I can’t remember when a teacher presented Adam’s work to the class for such a long time now:

“One day two leaves fell early in the morning. They weren’t happy because they wanted to stay up on the beautiful branch. A nice boy called Adam found them and stuck them up for the rest of the day.”

A few minutes later he typed to me: “Real useful ideas.” Then, “The joy love you mom.”

Thank you my little one. I am your devoted wretch-in-arms.

What Adam Said This Morning

Filed Under (ABA, Acceptance, Adam, Communication, Movement Disturbance, Sensory Differences) by Estee on 11-07-2013

Adam and I sat on the stoop as usual this morning for his bus to camp. Yesterday, Adam was content and happy and then his assistants reported another sudden biting incident, to which Adam didn’t seem to remember. It lasted but a few moments, then he happily moved along. Of course, I’m in a newer territory now with his, new concerns and am back to re-reading.

When I asked Adam about remembering it, he said “no” in several formats, including pointing to his chart, typing it out, and also saying it (which came first). He was happy and contented last night, jumping on his mini trampoline in the basement, which is now partially repaired after the flood. After I gave him his ten minute warning that it was nearing time for bed, Adam came upstairs.

This morning, though, my heart broke a bit, but I am also determined to do my best that Adam has a positive self-esteem. Let me preface this by stating that when a person like my son doesn’t speak very much, people don’t tend to listen as they refer to speech as “psychotic” and nonsensical. I never take Adam’s words as such.

“I don’t know anything,” he mumbled.

“You know lots of things and you will learn lots of things. You are really smart,” I replied.

“Teeeea-cher,” he sang melodically. Then again, “Teacher, teacher.” He climbed into my lap to be cradled.

I’ve asked his ABA school of late to teach him to his age-level and invoke the Ontario Curriculum, to which Adam is entitled, and they have agreed. I am devoted to making sure that education is Adam’s right. I am working this out with Adam’s team which may include part integration, part home-school, getting out more into the art gallery, the museum (he enjoys such places) and the programs he has loved so much and integrating this into his own writing. In Canada, there’s little option but to make our own path at the moment, and families have a right to choose what suits their children best. In Adam’s case, he requires support, and this is also his right in order to participate in his community in the manner that he wants, needs and is able. It is great when teachers understand these complexities, and I encourage everyone to continue to learn outside of the behaviour paradigm, and to listen to autistic people. (I think you can sense how concerned I am about what is reflected back at Adam in terms of his person-hood and self-esteem as an autistic person – a complete and whole person).

Post-Blog Comment:

Thanks to an email that pointed out something important to me which I must write here – in it, the person mentioned that the Ontario Curriculum is “useless.” I want to extend how I appreciated the comment as important and hope more comments will come. My comment to extend on that one would be that I feel that education is a right, but the manner in which that education is delivered to Adam must be customized. He still has a right to it, and the reality is that’s what he needs to fulfill to move on to higher ed if he desires it. There are many tensions at play here – my own personal experiences as a normate which must always be questioned; the changing needs and nature of education overall; the normative linear developmental model that represents the mutually supportive notions of social and neo-liberalism; and this quest for a specifically autistic education that fits Adam’s learning style and abilities while also providing him with opportunities to contribute to society as an autistic person – and this is the ultimate challenge when society doesn’t value people with severe disabilities.

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.

Mapping Things Out

Filed Under (Acceptance, Adam, Anxiety, Behaviours, Contributions to Society, Movement Disturbance, Obsessions, Safety, Sensory Differences, Transitions, Wandering) by Estee on 19-06-2013

london-globe_1839825i Image by: Stephen Wiltshire.

I must admit time heals anxiety. After the darkness comes the light, or is it the other way around? Well, the globe rotates. As Adam seeks knowledge by going through doors, I have always needed to calm my own anxiety through books. As I think more again about Adam’s need for doors, his curiosity for bushes, dark places, paths, and in particular, the doors within buildings, I’ve been thinking about maps and a book I bought for this purpose in considering Adam’s interests – Denis Wood’s, The Power of Maps. As many autistic individuals proclaim a need to map, to visualize, and with an exceptional ability at visual memory (routes, maps), I feel that this is the next frontier for us: to learn how to make maps of our environments, to build a 3-D version of our house, and go from there.

“We are always mapping the invisible or the unattainable or the erasable, the future or the past, the whatever-is-not-here-present-to-our-senses-now and, though the gift that the map gives us, transmuting it into everything it is not, into the real. This month’s Life leaps at me from the checkout counter: ‘Behold the Earth,’ it says. ‘Startling new pictures show our planet as we’ve never seen it before.’ Inside, below the heading ‘This Precious Planet,’ the copy promises ‘Striking new views from near space show us more than we could have guessed about our fragile home…I am overwhelmed by the solidity and apparent indestructibility of everything I see around me. Only the pictures – let us think about them as maps for the moment – convince me of the reality the captions evoke…’New picture'; ‘never seen it before'; ‘new views'; ‘show us more'; each phrase insists on the fact that indeed I never have seen the planet in quite this way” (p. 5).

It reminds me of Dawn Prince when she wrote in Songs of a Gorilla Nation of how she ran to greet every room of the house over and over again. Many other autistic people have superb visual memory (Stephen Wiltshire, Temple Grandin…). Adam once drew pictures that were so “correct” in their perspective despite the fact that he otherwise has weak motor control. This leads to the conditions in which a person with various sensory disabilities can and cannot perform the same task or function. Soma Mukhopadhyay speaks of this in her books on Rapid Method Prompting and I find them true to Adam – the way a keyboard is positioned, his orientation, the differences he experiences with his vision other body movements.Things have to be set up the right way for him, and I need to always pay greater attention because it is easy to fall back on my laurels and adopt my take-it-for-granted view of the world.

Sometimes it seems that I’ve always known that mapping could be Adam’s hobby which might lead to map-making or building. He needs to know what’s behind everything for what we call “obsession” or “stuckness,” automatisms and the like. Lennard Davis discusses how we come to value obsessions, particularly the actions of artists as “obsessive acts,” like Vincent Van Gogh. Instead of invoking a moral value (a trait or characteristic as inherently good or bad, positive or negative), we can come to accept these proclivities as inherent (even if it scared the living day lights out of me). Adam needs to explore and to know as I do by finding information in books. How might I make this something that works for Adam? This is my next frontier.

“The sphericity of the globe is not something that comes to us as seeing-hearing-sniffing-tasting-feeling animals, is not something that comes to us… naturally. It is a residue of cultural activities, of watching ships come to us up out of the sea for eons, of thinking about what that might mean, of observing shadows at different locations, of sailing great distances, of contemplating all this and more at one time. It is hard won knowledge. It is map knowledge. As such it is something that little kids have to learn, not something they can figure out for themselves. ‘Educators are living in a dream world if they assume young children understand that the earth is round'” (p.6).

So why do we prohibit Adam from being free to explore, to know what and how he needs to know? How can we keep him safe while doing so? How can we fuel his interests in ways that are productive for him, and perhaps for many others?

Personal Interest and Academic Reserach

Filed Under (Activism, Adam, Advocacy, Autism and Intelligence, Communication, Community, Computing/iPad, Critical Disability Studies, Living, Politics, Writing) by Estee on 28-05-2013

The end of the day of Adam healing from the croup and us both watching repeats of Wretches & Jabberers for my thesis. Adam can’t help laughing at the scenes of Naoki jumping up and down to Rimsky-Korsakov’s Flight of the Bumblebee – flapping his hands, moving the window blind from side-to-side, opening and closing doors, and running up and down the stairs to then, finally settling at his computer utterly focused and well, communicative. I can tell Adam’s feeling better as he giggles and then afterwards decided to do some puckered-lip kissing practice on my cheek.

Watching these clips from YouTube are also very important for anyone wanting to discuss it. I would imagine we’re all concerned about Tracy’s living situation and want that to change. As I write an academic paper about a subject that I am personally invested in, I also feel a responsibility to my son’s community. I am also selfish and grateful at the same time – selfish in not wanting Adam or anyone like him to have to be in Tracy’s position as well as inordinately grateful to both Tracy and Larry and their supporters for going out into the world to do this work. We are all motivated by personal circumstances which enables our emapthy. I am hoping to articulate my personal interests and vulnerabilities in my own academic writing, where one is otherwise supposed to be, in a traditional empiricist sense, emotionally removed and (supposedly) objective. Others have discussed this as well – Behar in The Vulnerable Observer, and Douglas Biklen in Autism and the Myth of the Person Alone and recently this new paper by Andrew Bennet in this issue of Disability Studies Quarterly discusses the possibilities of our mutual vulnerabilities – as researcher and research participants.

I really appreciate this clip that comes in addition to the film, as I wanted to know more about Mr. Thresher’s situation. I don’t live in Vermont, but I do think that the issue should be a politically active one here in Ontario as our autism societies take up adult autism issues. How can we enable autistic people to advocate on their own behalf for their own needs? How can we support them? This film should be shown at every chance in discussing positive living situations outside of institutions and segregated shelters.

I also work hard to get Adam to type and use AAC and seek people to support Adam. It is frighteningly slow for people to believe that Adam can understand, read, and have the ability to type and both of us need more support that is difficult to find here in Ontario. I’ve been writing this blog since 2005 and been telling people he could read words, numbers and book spines since he was 11 months old. I find it really frustrating if some verbal behaviourists teach him the word “cat” over and over again so he can say it correctly when he’s been reading it since before he could walk. The autism curriculum must change to include education and academics in its programs to be truly supportive of the autistic person’s right to education.

In terms of typing, his school will support him visually, and I think because of the time I’ve spent typing with Adam with support, that he is able to type to some extent at school without it. Yet I think with better support he could do better there and I’m trying to teach people myself. If you are a parent, you know this is a labour. However, I can’t understand any longer, as Adam and I have also been informally tested (yes, that’s the doubt people have about autistic people) that Adam’s communication is his own, and that with the right kinds of supports and teaching, he could communicate better by typing. This is seen in the same way deaf sign language was once denied to deaf people in favour of lip reading and speaking. Yet, communication is also a right. To deny a person with a communication disability such support and access will become an issue for law and policy, but our important work for now as activists and educators is to keep showing the work of autistic self-advocates, such as Larry and Tracy, as well as autistic people who are prolific bloggers and writers, and to keep breaking down barriers within our own homes, communities and schools, one person at a time.

My last thoughts for the evening: Isn’t it better to support an autistic person in their autonomy rather than to fret about what level of dependence they are going to have on their families or in group homes? In other words, isn’t the support of autonomy and our mutual interdependence a much more empowering prospect for us all? (I have to add, I am not intentionally favouring those who are able or have the desire to type or use AAC. There are those who are not able to use it and we have to consider the people missing from this dialogue).

Part of my work wonders why such doubt exists regarding Adam and why we’ve had to struggle with so much resistance with educators and clinicians. I do think that Adam, like other autistic people, will dispel the doubts. But I also wonder if we have to ask ourselves what or why we doubt, exactly? What do we fear if people with communication disabilities can communicate via other means? Is this the right question?

Two Vulnerables

Filed Under (Adam) by Estee on 28-05-2013

When Adam awoke struggling to breathe yesterday, I felt awash with dread. It was noon. I let him sleep in because when I went in earlier, he was warm. By noon, I heard the barking cough – the seal-like sound gasping for air. His face was beat red and temperature burning hot against the back of my hand. As I fumbled my with my phone by his side to reach the doctor, I tried to keep him calm. In my head, I plotted to call emergency in the next few minutes if he didn’t get better. He did. I managed to get him to the bathroom and then to the doctor’s office.

“Sick!” he said in a croaked voice struggling to speak.

“I know, Adam. You’re going to see the doctor and you’re going to be okay. Now don’t cry.” I hated saying it as if I was telling him to be a brave boy, but I knew if he did, he might not be able to breathe again. His face was crying even if his voice didn’t.

Adam has a viral croup and like any parent, I’d rather have the sickness. Today he is marginally better, still unable to leave his bed. I am near him, writing my Master’s thesis while he rests and I’m attending to him. I am a single-mom and have fretted now and again about what I would do in case of emergency. As necessity is the mother-of-invention (?) I’ve found myself plotting in my head how to do things, who I could call in a pinch, the public services available to us if we need them. And now, I am writing my thesis about autism, I write keeping my son and his dignity in mind. Using every morsel of time in our lives to raise him and care for each of us, I can’t help always thinking of Toni Morrison writing around her baby’s spit up and how important were both aspects of her life.

With the croup one has to take prednisone. Adam hates taking medicine so yesterday, after I told him he had to take it to make him better, he listlessly tilted his head on his wet pillow with do I have to? in his eyes. Yet I felt his trust too, that he would, despite previous instances of resistance, do it this time. After he took the medicine, he looked into my eyes – I read it in part as thanks, as desperation, as the vulnerable side of a child’s love and need. Then he mustered a smile and pulled me in for a hug….

As of that last paragraph, Adam came into my room to sit on my lap and I noticed how long his legs have gotten and how I can no longer cradle him. Then he got up and said “put clothes on.” We both went to his room to choose some comfy track pants and a soft long-sleeved shirt. Time to go…

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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.