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.

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.

That Loving, Fellowship Feeling

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

photo (5)

Adam and Nolan lunch

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

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

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

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

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

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

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

“Hi,” he said quietly.

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

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

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

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

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

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

“No.”

“Lemon?”

“No.”

“How about chocolate?”

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

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

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

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

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

Personal Interest and Academic Reserach

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

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

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

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

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

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

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

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

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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.