Beyond Mall Therapy

Filed Under (ABA, Accessibility, Aides and Assistants, Anxiety, Autism Theories, Autistic Self Advocacy, Behaviours, Communication, Community, Inclusion, Intelligence, Language, Living, Obsessions, Parenting, Safety, seizures, Sensory Differences, Transitions, Travel, Wandering) by Estee on 21-03-2014

I think many parents will agree that one of the most challenging things for families with autistic children are outings.  Adam’s anxiety and repetitive activities increase over his perceived threats and fear of change; he will need to check out the bathroom in every restaurant; know where every door leads. This of course makes outings difficult, and it has a lot to do with impulse. At this point in our lives, Adam has been exceptionally tense – and I want to add that this coincides with his development, awareness and abilities too. This is a really important point to make up front in order not to treat behaviors by redirecting them in meaningless ways (such as touching your nose to replace a hair-raising scream…this will just piss Adam off). One of the dangers with partially-verbal of non-verbal people, as we know, is that when behaviors start, there is a propensity to exclude or treat the autistic person as if they are not aware of what they need, or what they are doing.

This is where adaptive communication has become very helpful for us since November. Adam has been typing for many years, but most ABA schools will not support supported typing – this is so problematic for folks with movement issues which Adam expresses – Tourettes tics, seizure-like episodes (and seizures are much more complex than one initially thinks), and “stuckness” which is catatonia. These are some of the reasons for speech impairments in many folks – similar to aphasia. It’s not that they don’t think or understand or even “hear”what we say but rather the word-finding and expressive capabilities through speech are not available. However with typing, Adam becomes more fluent in his speech. With support, he becomes, eventually, a more independent typist. In the meantime, he writes, “my body is like an engine that doesn’t run continually,”and despite that he can type some things independently he has asked for our support. To not give it to him is seen by many as immoral…something to think about in terms of our own learning in how to support people to communicate in order to hopefully become more fluent and independent. (While I have issues with this latter notion as a neo-liberal concept, I acknowledge we are swimming against a tide here and in order to survive, Adam has to work hard to prove himself…something else to think about in terms of how we treat the disabled).

So, to go out when a person has frequent anxious or bolting episodes (the fight/flight response as we know it), now requires perseverance, patience and planning, and a respect for Adam’s ability to participate in his daily planning. It also requires our time in letting him assemble himself if he begins to meltdown. For example, while on our March Break at the beach, Adam needed to go the bathroom. If there is a loud hand-drying in the bathroom, he will become anxious and turn right around. This anxiety lingered after the visit, and he began to flop his body on the beach. I told him to keep walking and tried to distract him, but at this point, it wasn’t working. I asked Adam to sit down until he was ready again to walk. As we did, we began to feed the birds. This made Adam happy and then able, after 20 minutes, to walk again.

Similarly, a week before on the same beach boardwalk, something triggered Adam and he wanted to urgently turn around. I could not understand what Adam wanted or needed so I asked him to sit down and type with me. This was difficult and he wanted to get up and bolt. I said he could not get up until we knew what he wanted. As he began to type, he was able to say what he wanted faster -”hot air balloon.” At that point, I realized that there was a water tower that looked like a hot-air balloon far down the beach, however, I miscalculated just how far. As we began to walk, it was occurring to me that we wouldn’t get there on foot. But Adam was so happy and relieved to be understood, and skipped merrily alongside his grandfather and I. I began to say to Adam that  I didn’t think we would get there on foot, so at this point I was able to negotiate with him that we would go to dinner first and then drive by the “hot-air balloon.” Adam was able to have a nice dinner and also get to see his hot-air balloon on the drive home.

Today, my team are helping Adam on his outings with lots of preparation and photos and are working with me to practice outings with Adam in many places so Adam himself can feel more competent and less anxious. Every day while we were away, I insisted on taking Adam out, with someone with me for safety, because I fear that isolation is deadly.  This is where mall therapy begins but also has to end – so often, we only see autistic kids in places where therapists feels safe, and this sadly restricts the lives of many autistic folks. Some parents might be afraid to be stared at in public. This is when it’s better to have a card to hand out to people indicating that your child is autistic and you are working on outings. Or, if someone is exceptionally helpful, as I’ve experienced lately, send a thank you note if you can to support inclusion. While we may begin with mall therapy, we must move on quickly. As I was preparing Adam to see the animals today in the park, he typed, “seeing animals is getting very tiring,”and he asked to walk and take the subway instead.  This part of negotiation is also key to success for outings as people like Adam have a hard time advocating for themselves (although they do communicate with their behavior, which is largely viewed as maladaptive, sadly). I also have asked Adam how to support him in moments of need or meltdown where he wrote, “please be calm…” and indicated that these moments are also very embarrassing for him.  In addition to a bag of tools he has to help himself and cognitive behavioral therapy (which, by the way, is typically used on people who are verbal and are deemed “high functioning”‘… Adam’s ability to learn the concepts and techniques quickly rules out theories on HFA and verbal ability and the ruling out of such therapy for non-verbal people…I hope a researcher who presents at IMFAR will pick up on this as most of the people used in research study tend to be from the HFA/verbal group due to cost and time constraints…something to think about in terms of who we service, who we value, and how we treat autistic people).

So the question is whether the mall is used to simply used to truly help autistic people be included in the world, a step towards many outings and environments, or if it excludes people from being in the world. Yes, it’s a challenge for folks, and in the end, a person decides for themselves where they want to be. But if Adam doesn’t learn now as well as being able to advocate his choices while learning to negotiate with others, our lives will remain behind closed doors. While I know this is hard for Adam, I also know that he doesn’t want this.

 

 

 

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.

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.

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.

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?

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.

An Autistic Boy’s Life is Not A Paragraph

Filed Under (Anxiety, Books, Development, Parenting, Transitions) by Estee on 12-06-2013

Adam has progressively better days since the basement flood and croup. When he seems anxious or derailed by life events I quickly engage everyone on Adam’s team – what has worked well for him is more predictability, gentle voices, activity including sports and sensory support that befits him. All I have to do is write things down and Adam reads lists and stories for me. Countdowns work, clocks and the like. It’s important to set the time aside and concentrate on him until he feels better (and this makes me obviously feel better too). And while I’ve been bemoaning the loss of his cherub cheeks for quite some time now, puberty has officially begun. I can see it emerging as cherub cheeks turn in to pimply ones. It just really hit me this evening how much he suddenly changed. It seems as if the last two weeks have presented us with a lot and although I knew this day would come, I’m feeling a little strange about it, like, poof…the childhood is now officially gone. Of course, the transition is longer, but sometimes the way we view things seems so hyper-real. I’ve heard that boys stay close to their mothers, and while I’m really cognizant of him needing to spread his wings and be a boy, a teenager, a man, I still hope he will indulge my affections.

I picked a book up about boy’s development the other day. I scoured a few to read what boys his age go through. Of course, these are supposed to be boys with typical skills, but I still found it so relevant in terms of body development and feelings. I want to support Adam into his teenage will (and whatever else comes with it). When I looked for “autism” in the index, I was surprised, actually, to see a reference. I flipped to the page, situated in the first third of the book, and read the “warning;” that is, the “negative” things that a boy may not develop which might indicate autism. I was disappointed if not bored (while I considered new parents paralyzed with fear). I mean, when will autism be included in the long life development model that I need to read, and not as a blurb or a warning in a paragraph?

Adam’s life is not a paragraph. It doesn’t necessarily belong to the “special” boys category of books, either. It is a long, developmental line (and hopefully life) and he feels and just like other boys feel, and sure, then some. It would be great to acknowledge all boys, not matter what their label, integrated within the context of a full and whole boyhood – to include the ways that all kinds of boys may experience their bodies and feelings. Yet, autistic boys get books on different shelves (if we get any at all outside of Jessica Kingsley). Maybe we should simply ask that our boys getting written in.

How I Deal

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

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

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

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

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

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

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

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

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

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

Catacombs

Filed Under (Anxiety, Autism and Intelligence, Autism and Learning, Behaviours, Movement Disturbance, Obsessions, Safety, Transitions, Wandering) by Estee on 07-04-2012

Yesterday Adam and I had a jog, a long walk and a trip to his favorite playground apparatus, a spiderweb made out of rope which he can climb through.

He’s particularly enamoured with this piece of equipment as he can climb and nudge his way through the holes in the rope that make it a “web.” As I watch him, he’s polite to the other kids, waiting for them to move aside, or trying not to get in their way. There’s an eager route happening that I can see he needs to complete. I watch his face and imagine the cogs churning and the patterns he might be making as he moves so quickly and gracefully, if not earnestly. I imagine math going on in his head as he figures out his route. He doesn’t need to hesitate, like the other children, to think of where his foot should go lest he fall a few feet down to the ground. Funny because Adam will sometimes hesitate just walking down a hall. He has mastered this web.

After that, we went on our long walk. As we passed an impressive Catholic school in the area, Adam spotted a path. I began to feel his body tensing as he pulled me towards it. I let go of his hand so he didn’t have to feel that I might say no. With the couple of times he bolted and his need to explore every door — “door is a question” he once typed — he seems to be afraid that someone will tell him that we can’t go through every door, so he pulls at our hands. This led to some tantrums and bolting last summer when we said he couldn’t go through many of those doors. He just couldn’t stop himself.

I felt the tension again and I wanted to see what would happen if I let go. His brow furrowed; he was serious, but he walked with me and I knew full well he didn’t want to be without me. He didn’t want to become lost. I took deep breaths and spoke softly, because he “absorbs” my feelings, but still, I was at the ready in case he got that eager look in his eye and wanted to run.

As we walked side by side he began to say “catacombs…. catacombs.” Adam is not being taught those words. Let’s just say, he’s got a lot more ability than most people can see, and leave that for now. The point is, like much “autistic language” I’ve seen and heard, he appropriated a word he learned on his own, somewhere, to the paths he was exploring.

I was sort of glad that the forested path came full circle. I didn’t want to stop him and I considered where-ever we ended up, we could take a cab home. Or at some point, I would be able to tell Adam that we had to turn around, and see how that went. This is going much much better now. Adam is less stressed when I explain it’s time to turn around when my voice is soft and I give him warning.

Exploring Adam’s “catacombs” with him can be fun, although I’ll admit that I often have my own agenda and I urge him to follow me. I know very well that I must explore his, with him. We may not be able to explore every door, and I know that his environments are very important to him. Yesterday, he gave me yet another insight into the confusing world, which he is so eager to see… and master.

Running As Fast As I Can

Filed Under (Acceptance, Anxiety, Autism and Intelligence, Movement Disturbance, Sensory Differences) by Estee on 25-03-2012

I’ve got days when I worry about Adam and how his distress is for him. The one thing that’s the most difficult for me to cope with as a parent is watching my son go through distress. Any parent wants to take a cold or the “thing” that’s distressing unto themselves instead of on their child. As I try to experience the journey with Adam, I’m going out for a jog for him (he’s with his dad this weekend). It’s part of my new regime of not just being with him, but helping him cope with his buzzing, moving body. I’m running as fast I can so I can be with him.

I was really upset with myself on Thursday. Typically, we go to a grocery store after school and we try to do a different errand every day. When we went to the store, Adam reached for the candy. I let him put in in the basket. When he wasn’t looking, I put the candy back on the shelf. I’ve done it before and he hadn’t noticed. Did I think that he just misses things? Had I devolved to that? We continued our shopping for healthy food and went to our usual check out lady, Leda, who always has time for Adam. Leda is like my island of calm and acceptance at the checkout as more people stare at us lately. We chit chat and she talks to Adam in between his jumping and hand-flapping. I’m not going to stop Adam from hand-flapping (although there’s enough pressure from those glaring eyes that I often think about it) and there’s no reason to explain him in a check-out line, so people will just have to deal with it, okay? Sometimes if Adam’s hands are occupied, he won’t flap, but there’s something in me that hates doing that for the sake of not being stared at! This is but one aspect of Abelism we live with every day.

When we got home, Adam helped me carry the grocery bags into the house. He’s good with hauling weight now and I think it must be good for his active, buzzing body. “Groceries!” he implored and the crinkling of plastic bags sounded urgent. Adam looked through every bag over and over again. “Grocery bag!” he said, looking at me, then quickly moving on in his search. I realized he was looking for the bird-egg blue gummies he found on the shelf. When he couldn’t find them, he began rummaging through all my kitchen cupboards, since I tend to hide food in odd places so he won’t keep eating the junk.

“Oh Adam, I didn’t buy the gummies. I put them back,” I said. He wasn’t satisfied, and kept looking. “No Adam, mummy didn’t buy the candy,” as I tried to stop his frenzied body from moving fast from cupboard to cupboard. Adam’s face looked desperate, his anxiety mounted quickly and I was worried. “Here Adam, we have lots of candy. Have a gummy bear.” I pulled them from the top shelf, hoping this would satisfy him and I could sit him down to dinner, because when he’s hungry, he becomes more anxious. He pushed them away. “No….groceries!” he insisted. He tailspinned.

I felt horrible. How could I have been so sneaky and put something back on the shelf without telling him either no, or showing him I was putting it back? I know I have to always work on myself as autism mom, no matter how much I think I accept my son. I have to respect him more. During the flatspin, though, I found the parachute. It was music. When I could coax his writhing, lanky body onto my knee, I held him and sang. I got a smile. Then, we ate dinner.

Movement Disturbance — not so easy

Filed Under (Anxiety, Autism and Intelligence, Movement Disturbance, Single Parenthood, Transitions) by Estee on 19-03-2012

Adam is going through another phase and it’s time for me to be very hands-on again — new routines that may help his body and anxiety. He’s entering the pre-teen phase, and discovering things that can get him into trouble. I’ve started a running routine with Adam which helps his body calm down. Adam likes to jog (see photo). Yet like the time when we moved homes and Adam started severe spasming, he is now getting physically stuck — his body won’t let him get beyond a repeated movement. I can hear Adam start to whimper and I’m right there. Last night, it quickly became a loud cry. His face looked distressed and it took me a while to get him out of his chair.

“Are you stuck?” I asked

“Yes!” he yelled. Adam is not always able to respond when he’s experiencing this. He looked into my eyes, his body all sweaty, cheeks reddening. He let me hug him one moment, and pushed me away the next. I wanted to cry with him.

“One, two, three, four…walking out the door we go.” I sang my usual Feist tune which helps Adam move. Sometimes I hear him using it himself, which is a good sign that he can somedays. We make it to the shower where he has a “help me” look in his eye. He cried hard and I held him close. My heart breaks when he’s like this. Sometimes I get scared and I have to leave the room. I have to collect myself so I can comfort him, which I managed to do last night. Many times Adam will need to take a toy from on room in order to move on to the next thing. This he will do when he’s calmer but I realized it was a way for him to manage transitions, so I encourage it.

The distress, though — is it the new teeth punching through his gums? The lack of routine from vacation (he usually loves his vacation)? Growing pains? Another issue he cannot yet tell me about? These are some of the things we must guess as parents when communication falls apart. Sometimes he can speak in full sentences. Other days he can barely say a word. Some days he can type independently, while other days, or even moments, he will do anything to avoid typing. Adam is a neurological roller coaster ride and I’m on it with him. We can see what he is able to do and how intelligent he is, when his body permits him. When it doesn’t, Adam will become upset and frustrated. He is not in control of it. This is not behavioural.

On the weekened when he was drumming, he showed another flash of brillance — jamming in rhythm. It lasted a few seconds. Then his body took off in another direction and I had to help him focus again. Martha Leary and David Hill wrote about autism and movement disturbance and I am going to revisit it. Lorna Wing wrote about autism and catatonia. Catatonia is usally later onset — late teens, so I’m not sure if what I’m seeing with Adam is catatonia right now. In thinking about autism and movement, I remembered Amanda Bagg’s video How to Boil Water the Easy Way (and she’s wearing the Joy of Autism: Redefining Ability and Quality of Life event T-shirt). I remembered this video in order to remind myself what Adam is going through and in trying hard to relate to his experience. This is meant to be respectfully comedic. Please be patient with it and watch the entire video to really understand:

Of course, I’ve made the usual calls to investigate ways to assist Adam, and I am always in doubt. Medications are another roller coaster ride — perhaps the monster coaster that I’ve been avoiding, but I also know that I need to find ways to assist Adam with this type of pain. As for me, I often think that while I’ve assisted other people in their journey as an activist and advocate, it is in part to also help myself. I learn so much from others. I’m doing this alone in my home. Being a single parent, at night especially, has taught me that for all the times I think I can’t do it, I manage to. For all the times I think I may want to give up, I don’t. The thought of not being with Adam hurts me more. Talking it out or writing about it is helpful and for all the dark days, a good sleep and a new dawn sheds a new perspective. Adam woke up this morning with a smile on his face again, asking for bread and mustard for breakfast. There is still joy in autism and my son. He’s a fabulous human being! Yet like any parent, I have heartache when I see him in distress.

Other References:

Tony Attwood: Autism and Movement Disturbance
Martha Leary and David Hill: Moving On: Autism and Movement Disturbance
Lorna Wing: Catatonia in Autism Spectrum Disorders

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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.