2014

Filed Under (Academia, Acceptance, Anxiety, Behaviours, Communication, Community, Critical Disability Studies, Inclusion, Inspiration, Intelligence, Joy, Language, school) by Estee on 18-12-2013

There are days when I feel so grateful for the support Adam and I receive from the team, friends and family. My university is so supportive of our needs as well, allowing me a leave so I can lesson-plan for Adam and train him more in language and typing. With support since he was around five years old, Adam is now somewhat independent when conversations are not that open-ended and unclear. I can hand him a keyboard anytime and he can type his feelings or what he needs sometimes faster than he can speak the words. I also learned that animating words makes them meaningful and is better than rote vocabulary instruction.

Adam, as a hyperlexic individual since we could hear him speak at 11 months of age, loves letters and words. I am going to work with my son’s strengths. In so doing, I am training others in the process. Others watch how I do this with Adam and also learn to do it with him. I have no formal training other than personal study and my PhD work which focuses on semiotics and language and disability. This is my passion because of my son.

Adam is heading into puberty and has issues with anxiety, but seems most frustrated at not being able to say what he wants to say. When he gets the words out, he says them forcefully, looking into my eyes and saying the phrases again and again until I say it back. He knows I’ve understood him. I think it’s the way he’s been treated all of his life by us jabberers (dominant ordinary language users) in that we tend to repeat ourselves to autistic people who have trouble with ordinary language because we think they don’t understand us. Adam is doing what we have been doing to him. When I say the words back, echo him, he is satisfied that his message is understood. Phrases like, “I can’t wait anymore!” can be met by me with an acknowledgement and a timer which settles his need to know how much longer he must wait for his desired activity or item.

Also, operation calm down has worked. Adam is happier, the screaming tics abated. Following the stress and episode, Adam always emerges with more sentences (communication). I’ve yet to hear anything from the neurologists on it, but we keep trying just in case. This is not to “cure” the autism as much as it is to ensure that Adam’s health is attended to well; that we are not missing something. The health of the autistic person must be attended to as much as the non-disabled person. (Another topic about how to regard the autistic person might be better sought from autistic people themselves).

It was as if Adam was saying “please listen to me!” and we have. Some of it was because he didn’t enjoy a transition and the team and I will be working on this all year. That said, Adam is fairly flexible all things considered. We haul him on our travels, and I plan on taking him on many no matter what. I believe in respecting his difference and limitations while also helping him through without pushing too hard some days and knowing when to push because those days are so apparent. He loves to be with other people and to see new things. He loves being out in the world and engaged. It’s in the manner we engage him that is important to expand his horizons. I want to thank my university for supporting us in making this the best year for Adam and I. Without the understanding of schools and universities, we might never be able to do this important work that does effect so many people with disabilities in that not every year can be a consistent, machine-like operation. Sometimes we need to step back and focus on our children, or our own disabilities. I am overwhelmed by my school’s support. Thank you York University! I look forward to sharing my copious notes and experiences from the journey this year.

As for Adam this year, my mantra has nothing to do with compliance. It is about cooperation, engagement, respect, “muchness,” connection and yes, joy. Adam’s learning can’t happen without these principles.

Emerging Tensions: Puberty, Autonomy and Safety

Filed Under (Aides and Assistants, Anxiety, Autism and Learning, Behaviours, Communication, Development, Family, Identity, Inclusion, Intelligence, Living, Love, Movement Disturbance, Obsessions, Safety, school, Sensory Differences, Single Parenthood, Transitions, Travel) by Estee on 13-12-2013

It’s the end of the term…I need a long break and so does Adam. His anxiety went up as soon as the clocks turned back. The darkness brought about a new mood, Adam’s ticking went off the charts and he started a new tick – a screaming tick. He wasn’t happy – he couldn’t stop it as the pressure mounted on him to stop. I felt pressure in trying to help him, because let’s face it, screaming disturbs the peace. It’s alarming. With it, Adam’s flight-fight prompts him to bolt when he sees pathways and stairwells. These are all the signs that Operation Calm Down had to be put into effect. By virtue of naming it so, it’s not the first time we have implemented it.

Dad took Adam on a short vacation and this allowed me to have one too. On my yoga vacay, I met another dad with an Asperger’s son. He too mentioned that his son ticks and these anxiety attacks, let’s call them for now, make it difficult to get back to schoolwork. His son’s grades are going down, he said. So too, autistic autobiography reiterates the length of time it requires to self-regulate…sometimes days. Although I’ve been busy with PhD study, I realize the patterns of Adam’s distress tends to be at regular intervals during the year, and after sickness. Now that his body is changing as well as his needs, I am considering a leave-of-absence to help him, but also to help myself in so doing.

In thinking of Adam’s life and the very complex anxiety he has, his motor-planning difficulties, his frustration so apparent as he tries so hard to talk (the other day he got so frustrated, he picked up a pencil and in his chicken scratch wrote that he wanted to go to “gramma’s house”), we can’t always expect a learner like Adam to spend day-after-day exactly the same. The seasons change, there are new anxieties in life and we all need breaks. This is one of the most fundamental obstacle I can think of in how we teach children in general – in chairs for too long, in small rooms, with little outdoor exercise because of liability issues. It’s not one person’s fault, per se. It’s how we’ve built our society. We live in cars, in buildings and we don’t get out much. If Adam had an outdoor learning environment as a major part of his learning experience, I think he would be able to take in much more (outdoor education is decreasing but can be made accessible to people with disabilities). In the summer with lots of activity, for instance, he can talk more – and this is a feat for someone like Adam.

It is therefore very difficult to be talking grades, assessments, intelligence and so forth without recognizing that, living in the settings that are the way they are, that my autistic son will be delayed in his learning. The focus is far to much on intelligence (or ideas about intelligence) rather than somatic knowledge, difficulty and other ways that we can learn. I know this because when Adam is “on,” and there are adaptations to his learning, he can learn. I am writing in these terms because when looking at sites or articles about autism, the terms and ways of thinking about intelligence and learning are so “matter-of-fact” or normalized that we forget about how other kinds of learning can take place. This makes so many people, the forgotten ones. In essence, I’m trying to move away from a linear model of development and learning which doesn’t work for many people.

When the body has to spend so much time readjusting and becoming comfortable, the rest of the school work (at a desk in a chair…) has to be put aside. It would be wonderful for schools and educators to think about this a little more – to integrate movement into every aspect of the day including field trips and outdoor activities – even in inclement weather (my parents never protected me from it). I fear with our autistic children in Canada, that we are growing more back towards re-institutionalization in a different costume; we segregate and we isolate in order for our kids to be “safe.” In this, I appreciated mother and author of the book Spark, on her autistic son, namely, her “philosophy of muchness.” Never stop exposing (even with ticks, flaps and screaming) autistic children from many things – theatre, music, the outdoors, and accept the difficulties and make room for them.

We need to change the way we look at the length of education – since not all bodies cannot finish high school by the age of 18 (or 21). What other modes of education might we employ? Considering this is not as much an “intelligence” issue (I hesitate because I do not like to promote intellectualism which I find further separates people) as much as a somatic one.

Which leads me to some new revelations for me as a mom: that Adam’s “voice” is a part of his growth. It’s hard on me to watch him in a kind of pain from which he can’t escape (sometimes the ticks are a loop he can’t stop and sometimes they are willful – one “behaviour” can serve many different purposes) but also, I want so badly to give him the tools he needs so he can gain some latitude in his life. His life is so restricted with people always watching his every move – and this is, as I mentioned, for safety reasons. I often wonder, if given a great expanse of land to explore, could he feel better? What will his choices be for how he needs and wants to live his life? How can we support that? How do we stop protecting (or at least let up a little) in a dangerous world? I am certain some of Adam’s stress comes from having very little autonomy, and although he is strong and willful (which I believe will bode him well), if you can’t communicate fluently in our society, or you can’t cross the street by yourself, your autonomy is limited. This, of course, is where the concept of supported-decision making and assistance comes in, but assistants (and parents) really need to understand this and how to be good listeners (for some reading, look to Val Williams’ conversational analyses between caregivers and non-verbal individuals). Think of the life-skills training in addition to the education that our children also deserve. This takes more time than the allotment prescribed during the Industrial Revolution. I mean, it’s time to move on.

Then there is the need to reconsider how we look at behaviour from the outside. This is a problematic approach because we cannot know how Adam feels on the inside, yet we have lots of autistic autobiography to help us. When we tried redirecting Adam with a behavioural approach, this enraged him – he smashed himself into the couch and crumpled the paper from his Zeotrope in his little fists and threw them to the ground. The basis of this was to get Adam to stop screaming, but it did not account for the fact that he perhaps could not stop. This is the same for Tourettes (which I think Adam “has”) in that if you call more attention to the action, it will increase it. Instead, deflecting to relaxing activities seems to help more in addition to the sensory (deep pressure) that Adam needs.

An and calming approach worked much better than a behavioural one – this is what has to be done before we can teach any lessons – social and academic. Social stories and cognitive behavioural training are now a part of Adam’s week in addition to us seeking more adventure for him – rock climbing, circus arts and swimming. For CBT, another boy character is inserted into social stories to take the attention away from Adam. This way, Adam can relate to the character without feeling targeted. I gleaned this from reading Donna Williams’ Exposure Anxiety, which makes a lot of sense where Adam is concerned.

I fully believe after 12 years of being with Adam that seeking cooperation through engagement is our obligation, not his because he is still learning. He is a child who wants to learn, but we can’t do that by mere compliance. He complies when he is respected and engaged and also knows the rules (teaching boundaries respectfully will be our new challenge). I’ve started teaching three key concepts in various formats and in daily life to Adam – cooperation, patience and gratitude. In teaching Adam these concepts and ways to enact them in daily life, I also have to do so towards him. I’ll let you know how it goes.

Puberty will be challenging for Adam and for me. I am protective mother noticing the need and beginnings of separation. On the one hand it seems that Adam needs his structure and certain environments especially when he is feeling uncertain. On the other hand, he is truly becoming a teenager who is showing more signs of frustration and wanting to expand his world (this is different than bolting or escape but could be sometimes related). These may always be competing impulses in him, I don’t know. All I can tell is that they both exist within him. How do I give Adam boundaries and his own need for control over his own life now and ensure his safety? I’ll keep you posted on how this goes too.

Breathing Life into Words

Filed Under (Communication, Language) by Estee on 03-12-2013

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Adam has been reading words since he’s been 11 months old. When he reads aloud, it sounds as if Adam has weaker reading skills, but his typing is always better than reading out loud. Yet there is a difference in how we come to language, and I suppose I’m more inclined these days to post-structuralism in the way words relate to other words when I think of relativism and how, as we hear about some autistic folks, that words can have an associational meaning. For many people, words relate to an event, a sound, an occurrence. They are associational; sometimes they are sensory where metaphor works best. The point is, language is just a system. It limits experience that can not always be translated into words. For Adam, words are very important. They can mean life and death since most people would not bother to understand Adam’s language outside of “behavioural” contexts. As David Abram says, we are conditioned to speech. We miss the sensory properties and ways of knowing outside of speech and language; it is very hard for Adam and other people who come to language differently (if they can at all), to translate experience into words. Decoding and reading words can be different than feeling. I think that we have to view language more creatively and recognize that language does not denote intelligence – although we live in a society that still believes it does. Language is a half-formed tool, and in a political sense, it excludes many folks who do not come to the dominant, or ordinary, language as easily as some.

Adam and I were reading last night. I asked him to read out loud, but unless he uses words in the way he uses them (which is why typing is useful in many ways), it’s difficult to know what he knows about a word. So, as we were reading, I quickly ripped off strips of paper and we not only spelled words (which he can do well), but we made them come alive. The word around when literally around Adam’s head. The word “through” went through his fingers. “Wind” moved violently (fanned by me with a large book) and a pictorial leaf “spinned” and “tumbled” to the ground. “Whisper” came close to his ear and whispered “I love you,” and the “breeze” gentle moved the word on the strip of paper in the air. Adam wanted to read more. He grabbed book after book off the shelf as he read out loud, while we both made the words come alive for hours.

This is akin to when we hear parents labeling items all around the house which makes words “functional.” Yet words are more than that. How can we make words sensory? How do we make them experiential? How can we role-reverse the word? God may have breathed the word into Adam, but he forgot that we have to also breathe life into words. And still, words are never enough.

What’s Going on In Canada? Autistic Children in Isolation Rooms

Filed Under (Activism, Human Rights, Law) by Estee on 22-11-2013

The CBC news story on an autistic child being sent regularly to an isolation in a B.C. school was aired this morning. The student, who is “mildly autistic” (she can speak), is sent regularly to a windowless room. In polling the other young students if she should go, they responded with a resounding yes.

So what’s going on in Canada? Recently, the institutional “residents” of Huronia were awarded for their incarceration and imposed sterilization in Canada. Schools regularly remove students from classrooms. Despite the loss of the Auton case, ABA is the only “therapy” in Canada that attempts to normalize the autistic child. Negative reinforcement is still used in some of our government-funded autism centres. So while Auton didn’t win, the ABA movement has. There is no choice for autistic children in Canada. The Harper government has an agenda of ridding autism from our country. Money is spent from our “top” charity Autism Speaks to cure autism and when those same ABA schools and communities apply for funding for a $5,000 whiteboard, those grants are denied. As Ari Ne’eman writes in Loud Hands Speaking, the charity Autism Speaks does nothing to support autistic people and the communities that support them. Those same walks in our communities, with the parents who give thousands of dollars to it, get nothing from that charity in the way of supporting autistic well-being, lives and options. Despite deinstitutionalization, the rehab and medial model is supported to keep incarcerating people with disabilities. There is a human rights model, and those in the rehab and educational industries would be wise to start reading.

In the meantime, the B.C. school board seems defensive about its position. Policy-makers are deferring and the autistic girl is left in limbo and to the devices of a system that remains intolerant of her inclusion. There is an air of defense in this position. This, let us be reminded, however, that this is an infringement of the Canadian Charter of Rights and Freedoms and the UN Enable on the Rights of Persons with Disabilities. It is against the law as more cases set the precedents (it is still an hermeneutical exercise it seems, but the principles apply); we have to keep working. The school system, which only cares about those who conform the best and get through the fastest (it’s a business model of course that doesn’t care about those who require support – it uses the cost-benefit/burden models), supports this marginalization. Most disturbing is the trend of adults who poll young children, or indeed condone this isolation of their autistic peers. These adults need to be questioned, their attitudes need to be changed, and in most cases, the only way to implement change is to bring this to the courts.

And where will our Autism charities be in incidents like in B.C.? Those who continue to support the amelioration of autistic people in the guise of acceptance and help? There is a predominant medical and libertarian model that we urgently need to discuss. It makes sense when government money supports economic solutions, that is, proposals to make children normal contributors to the market economy. Of course, these are just proposals. Work projects will only work when autistic people are respected, their rights upheld and dignity in place. As in other countries, all people (especially considering our economic privilege in this country) should receive a baseline of support in order to live good lives (but I’ll leave that discussion for another post). These are modeled in other countries but we don’t pay attention. There are too many people living in poverty and many other people are making lots of money in the false-marketing of cure and recovery, not assistance, support, rights, social supports, attitudes, and yes, employment – the latter which more often than not is also a means of emotional and social support. Such exclusion in policy and law speaks volumes. Autism Speak’s leader in Toronto states that she “hates autism but not her child.” What message does that send to a public still in need of education about disability, it’s history and human rights? How does that attitude improve the lives and acceptance of her child, and other people who will always be autistic? These are the challenges that are most difficult to face and that ask many families with any child who is different to lock up their doors and stay off the playground. If we don’t talk now, we are risking a horrible reversion to institutionalization.

Instead, let us think about how we can work together to recognize that our country is sick, not autistic children and adults. We some of that change such as the recent settlement of former inmates of Huronia. We need to work with our communities to identify the attitudes and policies that lock us out and keep us in isolation.

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.

What Might Derrida Say About Autism and Language?

Filed Under (Activism, autism, Communication, Community) by Estee on 16-11-2013

Adam types, mostly independently, and also with various modes of assistance. Of late, he has developed his grammatically perfect sentences and I have to wonder about teaching the system of language. To most, this should be a heralded moment when Adam has joined us, society, in the shared system of social reciprocity. Yet I wonder about that term reciprocity. Is it reciprocal when we are a dominant group of language users? What of Adam’s own communication is considered valid? With learning our system of signs and signifiers, he will be able to join classrooms and other groups. I wonder about the validation of his body, his movements as asserting his being in society. I wonder if he will not lose his, for lack of a better way of putting it, metaphorical ways of speaking. This to me was representative of communicating a pattern of thought, perhaps translation, and perhaps a pattern of sensory experience; meagerly conveyed through our dominant language. In order to think this through, we have to consider how we limit experience by insisting on a form of contemporary autistic “oralism” (a term used for the Deaf/deaf, when they were force to speak instead of sign).

Adam also sometimes speaks. Sometimes he finds it hard to use words and “speaks” better through his body. This discontinuity, as it is often called, is referred to in the medical system as impairment or a problem. Speech in our society, we must remember, is also denotative of “rationality” which I continue to problematize. Derrida might not consider his speech discontinuous any less than language and rationality are (Simons, 88). Derrida says that without any gap between pages and letters, there would be no language or communication. So language is in itself discontinuous.

Adam’s meaning must be considered similarly. Without considering his whole being in the moment I could not weave a meaning. (And it should be noted that this should not be executed by only myself. I recognize I am a dominanat language user/speaker and I have to ask for various clarifications in a translation process but also have to be patient and simply watch and listen). Meaning is co-constructed, but the most important part of this that I want to convey is that often parents ignore this complex aspect of communication and maintain a level of expectation that no one autistic person will ever accomplish without a feeling of self-loss. Inasmuch as people should be praised for achievements, they should be praised for who they are. I also consider how this interactive view contributes to the feelings of impairment; that is, every interaction with others, mostly those fluent in speech (and who may consider themselves superior or normal as a result of being a political majority of talkers), contribute to feelings of impairment. There are a number of issues here, too long for a mere blog post, but let me continue.

If I follow Derrida’s line of thinking about language, there is no easy translation. I consider Adam’s typing a way of translating his thoughts into a system; I have to recognize that language limits the expanse of his thoughts, experiences and sensations. Like science, which is a system of thought and signs, we learn to frame a “problem.” We understand science by learning its language and it is primarily an encapsulated system which speaks among itself. It is here that I will reiterate a need to move away from science as “truth” as there are other valid modes of inquiry, much of which is already produced by those who are non-speaking. I am concerned also when fellow allies and autistics revert to this form of absolutism which has only oppressed them for many years. There are ways to take back the research and inquiry and IMFAR (among other science orgs) needs to respond to them too. I am reticent, as much as I support, a specific “autistic” advocacy as we know that language and labels change with time. How do autistic people keep their needed culture while at the same time co-organize across the many disabilities who share the need for respect, acceptance and inclusion (the latter word needs clarification but I will not do so here)? Many people labeled with autism prior to 1993 were placarded with dementia praecox, schizophrenia, mental retardation, to name a few. Labels are socially constructed, temporal. They are as diachronic and responsive to society as much as the rehabilitative and treatment methods seek to “recover” them. Yet they do share one characteristic which is political and social exclusion. Here, language as a system has played a huge role in how we regard and treat autism.

To continue with Derrida, discourse and meanings are shared and malleable (my word). Meaning is assembled across spacing/timing and interactive contexts. A text is like a textile, “produced only in the transformation of another text” (Writing and Difference, 279-80). The problem occurs in the behavioural and the sciences, Derrida would argue, when “provisional meanings are taken for definitive ones” (Simons, p. 90). Isn’t this what we’ve done? Isn’t this the way we continue to respond to organizations like Autism Speaks? In a Sausserean sense, we react to the constructed meaning, signifier of autism and we continue to validate it. In other words, by reacting, we also support the dominant system. In a political sense, I think this is important to remember when we respond. It’s not that we should not do so, but we must also think of ways of moving beyond this discourse as I fear we may only be continuing to support the current infrastructure that oppresses many people who do not fit the normal paradigm.

References:
Derrida, Jacques. (1978) Writing and Difference. Pp.279-80
Simons, Jon. Contemporary Critical Theorists from Lacan to Said. p. 90.

The Co-Production of Autism in the film Wretches and Jabberers

Filed Under (autism, Autism History, Communication, Critical Disability Studies, Critical Disability Theory, Film, Language) by Estee on 30-09-2013

Well, I finally posted my Master’s Research Paper that I completed in August and defended in September. You can read it here. Much more work will be going into this as I now pursue my PhD in Critical Disability Studies. I have to say, that a 65-page limit on this topic was extremely challenging. I look forward, as well, to presenting on October 12th in Denver at the Autism National Committee (AutCOM) conference.

When does a hateful letter become a hate crime? An Open Letter-Post to the Begley’s

Filed Under (Activism, Human Rights, Law) by Estee on 21-08-2013

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I returned home from Germany to find this story (the letter above) in my email box. How ironic. I had lived in Germany 26 years ago for school, and spent much of this trip marveling at the new Jewish museums, memorials and many new races living in Germany that did not do so to this extent when I lived there. Still, I didn’t get the sense that in cities such as Berlin, for instance, that these museums of hopefully-never-forgetting insures the security and citizenship rights for Jewish citizens or citizens of other races or disabilities. Work goes into protecting rights; they are not, sadly, given, and often impermanent. Therefore, there is work to be done.

During my trip, I brought my portable Hanna Arendt. I am thinking specifically of her essay, The Perplexities on the Rights of Man where she discusses inalienable rights and The Rights of Man which proved to be unenforcable: “The calamity of the rightless is not that the are deprived of life, liberty and the pursuit of happiness, or of equality before the law, but that no law exists for them…” She goes on to say how having a country was important for the Jewish people because without one, they were not considered people at all. Of course, we can’t produce a country for disabled people in order to obtain citizenship – it’s a silly thought if not a dangerous one; Arendt protests the classless citizen – one without rights – by arguing that the prisoner, at least, has a citizenship status; the Jews on the other hand, much like disabled people, have been targets for complete erasure from society. Similarly today, my concern is that autistic people continue to be status-less.

“The fundamental deprivation of human rights is manifested first and above all in the deprivation of a place in the world which makes opinions significant and actions effective. Something much more fundamental than freedom and justice, which are rights of citizens, is at stake when belonging to the community into which one is born is no longer a matter of course and not belonging no longer matter of choice, or when one is place in a situation where, unless he commits a crime, his treatment by others does not depend on what he does or does not do. This extremity, and nothing else, is the situation of people deprived of human rights” (Arendt, 2000, 37).

I conflate these situations – the disabled and citizenship status – with the recent story of this hate letter sent to the Begley family regarding their son Max playing in their yard. Waking at 4 a.m. this morning from Europe, I turned on CBC news to hear that this letter is not considered a hate crime (the other report suggests it is still under investigation at the time of this writing), and I thought that we must, as a community, ask just when, then, does a hate crime occur? Does it take more than one letter? Hundreds? Physical violence? Institutionalization? Calls for euthanization? Would this be in question if this letter was written about other “acceptable” diversities such as race, gender or sexuality? Why might we even have to accept this letter, regarding an autistic child, as escaping the category of harmful crime when it threatens, if not illustrates, many ignorances about autism? Why must we live – as autistic people and the families who love them – as second class citizens, or, as Arendt would probably argue, non-citizens? Are we not allowed, as this letter suggests, to go out and play, go shopping, be with others?

In Ontario, the disabled have the mechanisms under The Ontario Human Rights Commission and the Canadian Charter’s Section 15 for the rights of people with disabilities (although another discussion, I posit these Canadian instruments for reference purposes, not for the issues inherent in enforcing these codes or issues I have with the OHRC process). In 1976, the Union of Physically Impaired Against Segregation released the landmark statement that provided the beginnings of the social model of disability; “disability is a situation caused by social conditions…[d]isability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society (UPIAS, 14). While we have these new mechanisms that can be enforced, we know that until autism is understood in social terms, as a human rights issue, and not only governed by etiological interests that often occlude autistic personhood, enforcing autistic rights and cultivating understanding will encounter further discussions of citizenship, that merge with notions of capacity, various models of disability, and more.

For the purposes of this post, it is important, I think, to stick with a fundamental concern I have which is the right for autistic people and their families to live and thrive in their communities, to go to school, to have support, and be accepted as they are and to live a life without arbitrary labeling, diagnosis, testing buttressed by ignorance and the ignoring of a person’s right to live in society with their disability – to live free from harmful words and threat. As for the Begley’s and our families, we must not cave in to the violent words produced by their neighbour, but to protest against them in order that we too may partake in the fruits of life, to contribute to them, to be allowed to roam free with our whoops and flaps and delight in the lives of our children, and them in ours. For when these fundamental human necessities for life and well-being are threatened, particularly considering the tenuous status of the autistic human subject, we might consider this letter in and of itself the words of a hate crime – for words are the foundations upon which further human atrocities are built.

To add, CBC also posted an essay, What is a Hate Crime? which highlights section 319 of the Criminal Code: “The Criminal Code of Canada says a hate crime is committed to intimidate, harm or terrify not only a person, but an entire group of people to which the victim belongs. The victims are targeted for who they are, not because of anything they have done…It is illegal to communicate hatred in a public place by telephone, broadcast or through other audio or visual means. The same section protects people from being charged with a hate crime if their statements are truthful or the expression of a religious opinion.” I would think that we should all take up this as a threat to the entire autism community.

So let’s ask the key question again and I challenge our autism societies to take this up – when does a letter become a hate crime? Or, why is considered not to be a hate crime – perhaps this question is more revealing in how we regard autism and autistic people, and that society-at-large considers autistics, non-persons. Therefore, how can we protect the future of our children and autistic adults living in society? As for me, I write this open letter/post in support of any legal action they pursue against the author of this letter.

Reference:

Arendt, Hanna. (2000). The Portable Hanna Arendt. Peter Baehr (Ed.) Penguin Books.

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.

Loving Lamposts, Autism, and Remembering What’s Important

Filed Under (Acceptance, autism, Inspiration) by Estee on 09-07-2013

lovinglampposts_header

In 2007, I went to Edmonton to speak at Autcom. I happen to be presenting again at Autcom in Colorado this year about how to support autistic rights as parents, teachers, therapists and caregivers.

At that conference, I was interviewed for the movie Loving Lamposts (2008) which I saw briefly when it was released in 2011. I’ve spent much of the day today re-watching it as I write my thesis. I recommend you watch it for Roy Richard Grinker, Ralph James Savarese, D.J. and Emily, Kristina Chew, Charlie and James Fisher, Dora Raymaker, Sharisa Joy Kochmeister and her father Jay, Stephen Shore, Simon Baron Cohen, Paul Collins, Christina Nicholaidis, Kassiane Sibley, Nadine Antonelli, Lila and Lyndon Howard (boy you touched my heart), and more… and of course the maker of the film, Todd Drezner, his wife and the person they think about all the time, Sam.

It is an important movie for parents (and educators and doctors and…) of autistic children to watch. I don’t think there is any parent, no matter how accepting of our children, who don’t struggle with the temptation to succumb to the prevalent notion that we should be doing more therapy, advocacy, volunteer work and the like. The temptation to believe something is wrong when your child is the minority remains strong, and I remind myself how equally strong parents have to resist this negative vortex that takes away valuable relationship time. And, as stated in the movie, much of my thesis also has to do with how negative views, notions of abnormality and the language we use to describe autism can be assimilated by autistic people as part of their identity. This is really important to me as Adam’s mother. He is now half-way through the age of eleven, and after a really tough couple of months this year, as Adam was communicating something important to me, I consider that pondering my role, my beliefs, how I interact with Adam is, for me, a daily activity. In other words, the work I have to do as his parent on myself is not yet complete; what he wants for his own life and what he can and cannot do just is and I have to help him with that. In this, accepting autism is the hardest work I’ve ever done, and more often than not, the most gratifying. So, I just want to say thanks again for Loving Lamposts to remind me of this, for I believe we could all use reminding. Along with Wretches & Jabberers, it’s one of my favorite autism flicks.

It’s time to think about screenings and have more serious discussions here in Canada regarding how we support and regard autistic people. I sometimes get despondent when I see that ABA is the only option for our autistic children, and how that movement has gained such a hold in the field. It is of utmost importance that we discuss various habilitative services, the right to choice, the right to communication and devices and workers to support communication, to be autistic, the right to be accepted, to love, to be educated, to be supported in life and in finding purpose. My job as Adam’s mother is to make sure he has everything he needs to be an autistic person and everything he needs to fulfill what he wants to do in his life. And what I want for both of us is to enjoy our time together. It’s really important not to forget that.

The never-ending labyrinth

Filed Under (Anxiety, Behaviours, Medications, Movement Disturbance, seizures, Sensory Differences) by Estee on 28-06-2013

Adam’s jerking has increased as it was a few years ago… when we did the EEG and they said he had no seizure activity. My own anxiety feels seismic, and I wonder when all of this can explode, get worse, or if all my calming strategies for Adam are working. I’ve spoken with his doctor almost every-day this week, his school, his OT – doing what I feel I must to get all the information. It may be information I’ve learned along the way, sometimes we see things differently or new things at different points in our lives. We’ve generally avoided many medications but over time, things can change. Although we will visit the neurologist, it’s not time to act yet…

I hope that camp again abates Adam’s jerking and the stress he must feel he’s under. His basement flood, the end of school, a new baby on his dad’s side of the family. Sometimes I think that Adam is the strongest, most “controlled” person I know! When I think of his body and how hard he works to get through his day, I just can’t believe his strength!

Every day I ask Adam how he’s feeling. He usually says “I’m fine” with the same tone. Sometimes I get a “good.” Since his allergies, turned viral croup turned jerking and biting (conflated with the other changes in his life) this has changed – “I’m feeling sick,” he says. At least he’s loving his chewy tubes! He knows I love him too…that’s a good place to start. I know he needs my counts to five, my voice to help him move more days than others. A weighted vest seems to help and holding things in his hands. And although everyone is working as fast as they can for him, his space in our basement is not yet complete. It’s the space where he can engage in a lot of sensory activity.

I’m feeling sick – I don’t take Adam’s words as gibberish. His words may be few, but they are powerful to me. So I am trying to help him knowing the labyrinth we must travel through yet again, knowing that for every medication that is recommended, we would be treating a symptom, and where my real anxiety begins. It is here where the term autism, and perhaps its reified status, falls short in helping medical conditions for autistic people. I guess I don’t believe in rushing in. There’s just too much complexity about Adam and how he feels about things that this needs lots of time. Autism is too broad a term and Adam can appear as if he has Tourettes or seizures or movement disturbance like Parkinsons or at times, catatonia… Gah! He would fit just about every profile, my little guy. Anxiety and heightened arousal (either positive or negative) may trigger Adam’s twitching or biting. Some days, just working on calming and ordering his body is work enough for him.

As I try to help Adam, and want to abate his pain as opposed to sedating my worry, I also try to finish a major research paper and am thinking of Larry’s quote from Wretches and Jabberers: “autism is not abnormality of brain but abnormality of experience.” Here, I question autism as a co-production of that experience, the way must describe it with language that is always half-formed, where normative views and experience may alter Larry’s meaning in the way we perceive it, and where real pain of such a different experience may be missed or ignored because of the label, and perhaps where Adam may not feel supported, accommodated or maybe, even respected. All of these things I have to write down and run through my head over and over again; and this needs good communication from everyone involved. In any event, it can feel like an isolating experience because I must deal with all of this mostly on my own – I take the responsibility and the worry on, perhaps as the stereotype goes, like mother’s do. But I realize that I have the the loving support of my parents and my partner, Adam’s aide worker, and the other team members in our lives that he really needs in order to live a good life. Parents and autistic people require lots of love, support, inclusion. This includes general acceptance of the way things are, as well as acceptance that some people, like my son,sometimes cannot participate in normate ways. Instead, he can always participate given our patience, accommodation, consideration and respect. As I think about how I felt about rabbit-holes today – of medicines and men, and to use Adam’s word, “catacombs” of our journey – I have talked myself out of feeling anxious and will continue plot along… just like Alice.

Autistic Freedom

Filed Under (ABA, Ableism, Acceptance, Activism, Advocacy, Anxiety, Art, Autism and Intelligence, Autism and Learning, Behaviours, Communication, Computing/iPad, Contributions to Society, Development, Language, Law, Movement Disturbance, Obsessions, Parenting, Politics, Safety, school, Sensory Differences, Transitions, Wandering) by Estee on 26-06-2013

I’ve been thinking and planning with Adam’s team the next stages of his learning and doing our map project. Every once in a while, I got down the dark whole of blog comments and blogs that consistently regard autism, even its many complications and struggles, as inherently “bad.” The issue we have with thinking in these terms, although safety is an ongoing concern for many parents including myself, is that we think we can shape behaviour without truly understanding it, and that what we are talking about is bad behaviour. Behaviour is something that we can control, impulse and many disabilities are not constituted by the will of a person. So when we talk about shaping behaviour and “positive” behavioural support, we always have to question our subjectivity and how we’ve come to make sense of autism.

Given many of our children are not provided access to alternative communication support, and cannot tell us otherwise, and that it takes time and care for many autistic people to learn how to communicate (if they can), the Antecedent, Behaviour, Consequence (ABC) mode of tracking behaviour will remain problematic, and the very recognition of that can be helpful. There are often too many conflating factors that precede a behaviour so, while we do our best to interpret it, it is always difficult to claim one cause. Here I find that I’m needing to ask many different players in Adam’s life for information so that I can cobble together the best interpretation I can, bearing in mind that this is merely an interpretation.

So with recent events and noticing Adam’s propensity for visual memory, needing to know his environments, I continue to study maps and autistic art and will experiment how this might be useful for Adam. This is another example of the visual map I found by an autistic artist found at Drawing Autism: 50 WAtts. It’s part of my interest in helping Adam draw his own maps as a way of understanding his own environment. This means, I have to be careful how I enable and support him, and be in a continuous reflexive state of mind in terms of enabling versus prompting him which would therefore NOT be his own communication.

Felix: Imaginary City Map, Age 11

Here’s how the artist responded about the work:

What was the inspiration for this piece?

Generally I start drawing one street on different spots on the edge of my paper. I make the streets grow toward one another.

Who are some artists that you like?

None. I study road maps and atlases in detail and generally I scroll the full track of our trips on Google Earth.

I turn now to education in hopes to keep honing in and improving it when I think of Adam’s needs. Under the rubric of the Medicaid system in the US – a system that is already in existence – advocates seek more, or varied, habilitative services for autistic individuals. This is an important beginning within an existing system and we have to keep discussing the medical model and its effects on the way autistics are included and regarded as full citizens, or not, in society. In Canada, we also require more choices that fit with parental values and wishes for their autistic children, and this was addressed by Doug Reynolds in his paper for Autism Ontario: Looking Forward: Has Intensive Early Intervention Hijacked the ASD Agenda? The work of autistic people in this is valuable in how I think about Adam and his education and the extra supports and help he needs. Bear in mind, I write here a blog post, not an essay. Here are some of the ideas that I think about that I have not yet formatted into a paper.

To go on, if a parent wants an education for their autistic child, they should be able to work with a school to attain it using some key principles:

1) Respect for autistic identity and personhood;
2) Understanding learning at one’s own pace and an acceptance of it (as opposed to a linear model for learning and development);
3) Understanding and completion of complicated sensory profiles and the time it takes for accommodations to be put in place and,
4) recognition that accommodations frequently change and must remain flexible;
5) Recognition and acceptance of family-hired (which could fall under a direct-funding model from government support) support workers as reasonable accommodation in classroom – for transitions, programs, to help with accommodations and if needed, supported communication and whatever accommodation an individual and family might need to enable success;
6) Transparency by schools – to allow parents in for observation, to review class binders, etc. Considering many of our children are non-verbal, it would be good to not only communicate in binders, but to allow drop-in visits (even if a bit of arrangement is needed to respect others). This enables open-hearted communication and better accommodations.
7) Communication aides and technology and access to supported communication and devices as legal right to communicate as autistic people. As an example, an ABA therapist will often say “use your words,” thereby implying that an autistic child is stubbornly with-holding them. Considering the levels of frustration an autistic person has when they cannot communicate, do we not think they would use their words if they could?);
8) Recognition that most autistic people we name as “inconsistent” and “discontinuous” or “having regressed” is often a result of sensory issues and transitions, and that learning happens at unexpected rates. Sometimes, the teaching agenda must be put aside when an autistic person may seem “disregulated” and build back tolerance. An autistic person can often jump several grade levels in reading, for instance, and then appear to have regressed. This is not necessarily indicative of a regression so much as a need for a body to regroup. Therefore,
9) testing autistic people academically so they can advance grades must happen with re-presented formats, over many sessions, and then, the best result should be taken as an achievement of grade or pass so that the autistic person is not held back until they “recover” from autism to normalcy and thus never allowed to advance, or potentially restrict their pace and ability. To understand the seriousness of withholding education as a right, see Moore vs. British Columbia and the note that remediation may result in adverse effect discrimination because it assumes a person has to reach a certain level of normal performance before granted the right to be educated. Of course we want children to generalize skills and be as independent as possible or to achieve an 80% mastery, but often this concept of discontinuity is missed or misunderstood and education is held-back.

These have been my considerations of late and, and I support a variety of methods that befit a child and the combination of many may suit for different people and different situations, so long as they do not harm or torture an autistic person.

ABA is pretty much the only method which is used in Canada to remediate autistic people before granted access to education (particularly people labeled with Low Functioning Autism, who are non-verbal, or who have complex sensory systems). It can be a useful strategy also within a curriculum but it needs to keep examining itself from within and by studying autistic autobiography and potential effects of behaviourism on self-identity. I am suggesting that autism schools also need trained teachers in regular and special education and need to:

1) Be inspected by the Ministry of Education for meeting curriculum requirements (the adapatation and accommodation piece is an extended discussion);
2) Adopt other methods that we know help an autistic person learn through re-presentation of materials (see Judy Endow);
3) Be reflexive about the psychological effects of shaping behaviour and compliance may have on autistic individuals self-esteem and identity;
4) Learn creative methods and enable an autistic person to go on outings to educate not only life-skills, but other interests by using other methods and creative strategies. I remember one professor of an autistic child stating that when her son was interested (or people tend to label “obsessed” with asphalt), she took him to an asphalt factory.

Do schools undergo this kind of creative exercise for autistic children who, for instance, may bolt and may be so enamoured with routes and maps so as to learn something as opposed to controlling behaviour? Sure, we have to attend to immediate safety concerns, sensory regulation and building tolerance – these are important steps to an autistic person’s success. Yet my question persists – what can we do that teaches an autistic child to creatively channel their passions and proclivities? What are we telling an autistic child day-in and day-out about them when we ask them to “comply” to our agenda without enabling some of theirs? What is freedom if not mobility? Is an autistic person a slave to the performance of normalcy if they are not allowed to freely move their bodies in order to feel safe and secure? (See Judy Endow and Tito Mukhopadyhay). For instance, there is so much autistic autobiography about how autistic people need to protect themselves from over-stimulation – reverting to their iPad in order to be part of a group, squinting their eyes, or if they do not feel their bodies, they feel frightened and must flap their hands or lie on the ground in order to feel safe! If we are talking about “safety” how are we helping? To what extent to researchers and teachers use and take autistic autobiography seriously?

The other issue I need to bring up today is one of freedom of choice. What I find concerning about models of teaching for autistic people specifically is the judgement of some parents against other parents for choosing what they feel is right for their families and their children. It is not right to state that an autistic person has to undergo a certain drug or therapy or blame a parent or an autistic person. The freedom of families as well as autistic people is at stake, and while I wish to trouble this, I realize this has many angles and complexities within such a discussion. Some autistic people feel a parent agenda, if it is one of just becoming normal without critical regard, can result in problems when autism is seen as a disease that requires potentially harmful remedies. So by no means is this discussion an easy one, but there is no freedom if Canada only presents and makes available one kind of service. In short, Canada, with an autism agenda led mostly by parents, needs to consider what it’s building and its long-term effects. There needs to be choice for families, a respect for values and an invocation of substantive equality in our systems.

Here I wish to close with an opening – with the words of Melanie Yergeau, autistic, from her essay, Socializing Through Silence:

“My silence is in fact a compliment. It means that I am being my natural self. It means that I am comfortable around you, that I trust you enough to engage my way of knowing, my way of speaking and interacting.

When I dilute my silences with words – your words, the out-of-the-mouth and off-the-cuff kind – I often do so out of fear. Fear that my rhetorical commonplaces – the commonplaces that lie on my hands, sprint in my eyes, or sit nestled in empty sounds – will bring you shame. Fear that my ways of communicating will be branded as pathology, as aberrant, as not being communication at all…This isn’t to say that my use of your language is always a product of fear. There are times when I genuinely want to use it, understand it, and learn about and from it. I understand that speaking is how you prefer communication. I understand that speaking is how you best learn and interact…

But the burden can’t always rest on me. I have a language too, one that I take joy in, one that I want to share. And when you deny me that – when you identify my silence as a personality flaw, a detriment, a symptom, a form of selfishness, a matter in need of behavioral therapy or ‘scripting’ lessons – when you do these things, you hurt me. You hurt me deeply. You deny me that which I need in order to find my way through this confusing, oppressive, neurotypical world.”

— From: Loud Hands: autistic people speaking, pp. 303-4, The Autistic Press.

Now, how can we respond?

Mothers

Filed Under (Parenting) by Estee on 21-06-2013

Adam’s twitching has not fully abated and he was up all night…not something we’ve seen to this level for over three years now. He seems to be happier and I am working on keeping him calm – and there’s people who also help me to do that. I think I’m doing the best I can as a single parent and how it forces me to never give up, call out for support, and stay persistent in asking for help because I realize not everyone knows what kinds of help we all need, or even how to help. I know this is not exclusive to women or single mothers, but to single fathers and married couples too. Yet I speak from where I stand today.

I never realized the extent to which this would be a challenge, not Adam per se, but being a mother alone in the middle of the night without anyone to talk to takes a toll on me; having to ask for help, or the right questions, in so many different ways. You have to stop caring what people think of you and go on for the sake of your child because we need as much information as possible. This takes a lot of time. As I care for Adam, it is often difficult to remember to take care of myself. I am thankful for my parents who help both Adam’s father and I out; they are exceptional grandparents and I can’t emphasize enough how important grandparents are! Adam’s extended family is helpful too and although it is hard to let my child go, I know that people’s intentions are for him and to support him, and I’m thankful for everyone involved. I am so tired today but I don’t want to forget to thank people who extend themselves to support us.

Adam’s basement is being repaired – a major renovation. On top of everything I live with a reno which takes its own toll of drilling while I’m trying to get things done…I also have a sensitive sensory system where noise is concerned…so it feels like a dentist drill to me. Yet I am also grateful for it getting done so quickly. Everyone is concerned for Adam to get everything back in place as quickly as possible.

Being on our own – no matter who we are – makes the generosity of others so apparent. My mother sent over a thermos of special tea just for me. That seemed to me like such a loving gesture that I almost cried. It’s exactly what I needed – a mother needing some mothering. I drink now to get my strength back, to give back to Adam the mother he needs.

Speaking of which…Adam will soon today be Uncle Adam. His half-sister will also soon be a mother, perhaps a sleepless one for a while. Mazel tov, dear mothers (and fathers and grandparents too)!

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?

High Anxiety

Filed Under (Anxiety, Safety, Transitions) by Estee on 18-06-2013

Two years ago today, to the day, Adam bolted. He has lots of need to run through doors, especially at my parent’s condo. I remember it well… my dad coming back from an enjoyable walk, his hand sweaty then off Adam went; so fast my dad said. When Adam saw the concierge he was familiar with when he got lost nearby their condo, he ran into his arms. My mom called me …I was not far by this time after I jumped into a cab. By the time I was five minutes away she announced that Adam was found. Adam saw the police and seemed timid in their mighty kevlar presence. Then, strategies in place, Adam felt better. I called it “operation calm down.”

Today…I got a call from Adam’s dad that Adam had bolted in his condo. Police were called. I jumped in my car and started to fly down to them. I received another call. Adam was found in the stairwell. He was okay. I stopped the car.

What are the similarities between then and now, I asked myself? I’ve been trying to keep Adam calm, successfully doing so with his team this time, his school – using weighted knapsacks, keeping his hands busy, and a multitude of other little things that I know work for Adam because I am so close to him; to write them all down would constitute an Adam how-to manual (I think I’ve written it in emails to his school, his dad, and everyone in his life, actually). Well, two and a bit years ago, the house his dad and I shared, and the one Adam stayed in after I moved out, suffered a serious fire. Adam never went back…so he was suddenly extracted from his home. His dad moved in with his parents for a while where Adam became familiar. Then, his dad moved into a condo. This was all happening around the same time his aide worker of seven years moved on, and his school announced they were closing down his class. Ah, the merry month of June.

Two years forward: Adam suffered a very bad viral croup and was in bed for one solid week. Before that Adam suffered bad hay fever with nose bleeds… an all-in-all crappy month-and-a-half. That same week of the croup, his beloved basement flooded from a bad rain storm we had here in Toronto. It’s the room where he is KING – he controls his own videos (he likes the old VHS ones and I save the TV that can play them), his OT swing, toys, mini trampoline. He is a free spirit down there. After his week of sickness and flood repair (we’re still repairing after thousands of dollars worth of serious damage) he went back to school and was having a hard time adjusting. He clenched his body and started biting. This has now abated and he cleverly taught himself to bite into a chewy toy…good on him (it’s better than people or himself). “Operation calm down” requires lots of pressure, a weighted knapsack on outings, structure, visual lists, emotional support, and more effort, planning and attention than is typically required…well I’ve said it above. I’ve learned that there are just some things that Adam needs and some things he just cannot do when certain things are happening in his life, and he communicates this loud and clear. I guess I can’t understand why others don’t understand that some people can’t do everything that expected of them. I’ve been tuned into Adam’s anxiety from the wee hours of the morning when he was born – no exaggeration. Seriously…way to sensitive myself here.

So as I’ve finished my self-help post, my hands have stopped shaking. He is safe. I’ve talked to his dad again and asked if he (dad) is okay…it’s certainly a scary moment. Maybe I’ll remember to take a deep breath after nearly a month now of holding it in. Tomorrow, back to teaching Adam. Back to strategic operations.

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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.