Fort McMurray Community Discussions
Autism Alberta, the University of Calgary, and community leaders and partners are working together to better understand the information and resource needs related to autism spectrum disorder (ASD) for rural, remote, and northern communities in Alberta. On April 20th and April 21st, two terrific in-person meetings, led by Kirsti Mardell and Tosha Moore, identified areas to advance in Fort McMurray. Approximately 40 community members with a range of experiences participated in the meetings, including family members of individuals with ASD, service providers, and even a local media representative! Click here to see the media story.
A Night at the Movies
On Wednesday June 8, almost 200 people attended a private screening of Jack of the Red Hearts at Carnival cinemas in Red Deer.
A Hundred Minus One Day
My father’s heart attack came in the summer of 2013.
I was twenty-two at the time. I don’t remember how old my father was. Older than twenty-two, I suppose. I don’t know his year of birth, so I can’t properly calculate it. I must have known at some point, but it seems I have forgotten. I’d probably forget my own age (as I have in the past) if I wasn’t so often reminded of it, and if it were not necessary to fill out the endless forms and waivers that form the fabric of life under a modern bureaucracy.
It wasn’t a dramatic affair, as life-altering medical emergencies go. He’s always been the reserved type — not a cold man, no, for he is certainly capable of a great depth of emotion. He is simply one unaccustomed to overtly dwelling on the sentimental, allergic to gratuitous theatrics, no matter the occasion — including, it seems, mortal peril.
All in all, of my parents, my mother was the more obviously distressed. I remember a confidence, made in the dingy corner of a perfunctory hospital lobby: “I’m not ready.” I don’t know exactly what it was she wasn’t ready for — not ready to be a widow? Not ready to be alone? Not ready to support her family on what sum the life insurance might pay? I could guess the answer easily enough. She wasn’t ready for my father, her husband of well over twenty years, to die, for the man with whom she had spent decades of her life to leave her before they had a chance to share the rest.
No matter one’s age, the first moment one comes to see one’s own parents as mortal, as vulnerable in the way that all fallible humans are vulnerable, susceptible to all manner of mischief and folly, is something of an unpleasant surprise. It is not unlike missing the last step of a staircase in the dark — it is the sudden, nauseous lurch of finding oneself ungrounded, unable to trust one’s own previous experience. The purely theoretical knowledge that all adults are impotent in such a way can only cushion to a degree the blow that is the evidence thereof.
This effect was perhaps exaggerated in my case. My father is stoic and often taciturn, and my mother is strong-willed and practical-minded, while I am none of these things. I come from hardy blue-collar stock, a long line of labourers and farmers accustomed to hard work and hardship. I, however, am something of an outlier, an outsider, prone to long rambling monologues about the function of semicolons and in possession of the dreamy temperament of an 18th century poet. I have therefore long depended on the hardy practicality of my immediate family to supplement my own absent-minded intellectualism. To see those upon which one habitually and confidently relies so distressed, so uncertain, is a deeply disorienting experience.
My father’s recovery after surgery was quick and uncomplicated, but I cannot help but linger over that conversation with my mother. I’m not ready. I find myself puzzling over those words, tracing them once more and again in my mind’s eye. Perhaps because I had not expected them, because they surprised me, startled me when she first spoke them. Perhaps because they were spoken with such passionate sincerity, such unusual emotion, it seemed wrong to simply forget them, to dismiss them, to throw them away the moment their present communicative function had been served. To treat them as no more important than the innumerable renditions and repetitions of “how was your day?” and “where’s the remote?” we’ve shared.
More likely, I think, it’s because those words parallel something else my mother once said — a different time, a different conversation, but somehow linked, somehow connected. It isn’t like it was the most novel of sentiments. Doubtless very few people are truly prepared for the death of a loved one, of someone so integral to one’s life. Even if all practical affairs are in order — and they so rarely are — one loses something irreplaceable, a piece of one’s very heart. There is only so much to be done to soften the blow. Rather, it echoed a sentiment that I had heard again and again: What happens to you after we’re gone?
I have long known of my parents’ concern for my future — a worry present long before my diagnosis as an autist. My adult independence was, after all, the bulk of the argument for continuing my teenage driving lessons, for all that each session left my skin coated and my clothes soaked with a cold, nervous sweat. To an extent this was no more than the fear of every loving parent: that they should fail prepare their offspring for the world in all its cruelty and trials, that their first duty as parents — to teach and to protect — should go unfulfilled.
Nonetheless this fear, this bone-deep anxiety, is sharper, more visceral to the parents of children with developmental delays, no matter how old those children are. Neurotypical children follow a relatively predictable path to adulthood and independence, though certainly that path is rougher for some than it is for others. With autistic children, the future becomes uncertain, unpredictable. While every social and cultural institution provides a model for what neurotypical children will someday be, our society has only recently, stutteringly come to recognize that autistic children do indeed grow up, rather than simply dissipating into the aether at eighteen like so much coloured smoke.
Too, it is far more likely that a child diagnosed with autism will yet need the care and constancy of their parents at twenty, at thirty-five, at fifty, no matter the strides, the progress they have made during those decades, those years. However, the reality of our mortal existence is that no matter how much two people might love and care for one another, no matter how a parent might wish to protect their child from all need and uncertainty, someday one will be forced to live without the other. There is a reason why my mother’s anxiety, the inescapable words, what happens to you after we’re gone? center on me rather than my brother, my sister. For all that I am relatively independent, for all that I hope one day to be self-sufficient, the question is not irrelevant.
We turn then to the greater family, the community, to love and accept and care for those under our charge when we no longer can. There is a shared duty of compassion we owe to all children born to our society, no matter how different, no matter how strange. There is a shared duty to build a society of compassion, one where unalike minds may flourish, one that will last long after our bones are dust to nurture and provide what we cannot.
A Home for Quest
Jeff’s Marathon Journey: June Update
Here’s the latest news from Jeff’s Marathon Journey:
Hi all,
After skipping an update in the month of May (for good reason, as you will soon read), here is an update for this month.
Leaving our home late in the afternoon on that fateful Tuesday, I made mention to my wife Yeunsuk that we should probable plan and pack accordingly for a couple of days out of our house – little did I know that six weeks later we would still be living in temporary accommodations in Edmonton, with no definitive date on when we will be returning to Fort Mac. While many have returned (our area of town wasn’t heavily affected – luckily, our house has no fire, smoke, or water damage), we have made the decision to stay put until the city water is deemed safe for consumption. One of the unfortunate symptoms that accompany Ben’s autism is a seemingly unquenchable thirst for bath water, so the only options we would have if we chose to return now would be to run the risk of a nasty GI issue due to shady water, or suspend all baths until the water is safe, neither or which is really acceptable.
An update on my training – as mentioned above, I unfortunately had to cancel my trip to the UK, which subsequently meant I was unable to run the Royal Windsor Half-Marathon on May 21st. Initially, this felt like a major setback, as I had been training a half-marathon program in preparation for the event. After the dust stirred by our evacuation had settled a bit, I was able to rethink things and decided that our evacuation wasn’t a suitable crutch for not training. The silver lining in the cloud was that I was now in Edmonton, with access to far more races than I ever had in Fort McMurray. I am happy to say I have taken full advantage of the opportunity presented by our predicament. While my day-to-day training has taken a hit – I’ve been mostly confined to the treadmill in our condo, and have found it difficult to follow a regular schedule – I did manage to sign up for and successfully complete two relatively long distance runs since our adventure began, albeit with varying results.
Twelve days after the evacuation, I signed up to run a 15km race in Edmonton. Accompanied by a good friend of mine from work, we embarked on the second race of the MEC Trail Series. Due to some ill-advised Indian food for dinner the day before and a mid-course hill that was both very long and utterly unexpected, this run proved to a be a bigger challenge than I had anticipated. I ended up walking part of the way, and finished with a weak time compared to what I knew what I was capable of (1h:32mins, for anybody interested).
My second race came last Sunday. I made a somewhat last-minute decision to do the Calgary Subaru Centaur Half-Marathon. Yeunsuk and I had been planning on visiting Calgary for some time, but with rain in the forecast didn’t think we would make it on the weekend of the run. Of course, after consuming too much BBQ and beer the week before, anticipating I would not be running, we woke up in Edmonton on Friday morning to check and find out the forecast of rain for the weekend had now been changed to sun. We decided to go (lots to do and see in Calgary with the kids), and I decided to run. The run went about as well as expected – I didn’t have a proper last 3 weeks of training or a taper, so am happy to have finished and run the whole way. I bested my previous half marathon time by just over a minute, but with a finishing time of just over 2:11 (as per my phone app) realized I still have LOTS of work to do before New York.
That’s all for this month – until next time!
Jeff
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Nurturing Independence in Autism
From the Autism Awareness Centre Blog:
As a parent, I can attest to the fact that creating and nurturing independence in my children with autism is both very relieving and a little scary. It can be hard to let go of control, and to work through all the step by step processes to help someone on the spectrum learn to do tasks, daily activities, and take care of even a portion of their own schedule. At the same time, nurturing independence in our children with ASD can be very rewarding for both parent and child, and ultimately lead to a richer life for both.- Start small with two choices on a board: “Would you like an apple or banana for snack?”
- You can also start with a non-preferred activity followed by the choice of a preferred one. For example, first we do math, then you can let the child choose between two or three things they like to do. This teaches the child they can do something they don’t like, delay gratification and survive – all part of life.
Schedules can be done for the day or within an activity. If a child feels anxious seeing the whole day’s plan, break it down to morning, afternoon and evening. When scheduling, think about teaching flexibility and how to cope with something unpredictable. Put the word “surprise” in one time block. Teaching flexibility and unpredictability are important life skills because we all know the day doesn’t always go as planned, and things can change at a moment’s notice in the workplace.
My children, Marc and Julia, explored the concept of working to earn things they wanted through volunteering at a local Farmer’s Market. Julia wanted a Playmobile Pool, which was more expensive than the two DVD’s her brother wanted. I told Julia she had to work four shifts to earn the pool while Marc only had to work two shifts to get his first DVD. Both children understood this concept and realized you have to work more hours to get something that costs more – a valuable concept to grasp.Both Marc and Julia practice checking out groceries at the self-serve checkout. Both can sign out their library items at self-serve check-out. I also increased their job responsibility each week at the Farmer’s Market. For example, Marc had to work with the manager on putting out the pylons for the market stalls. Each week there was a different manager who had a different style from the previous one. Marc learned how to follow directions from different people. Julia had to bring the beverage orders to the vendors and take their money, which helped her practice her memory and interpersonal skills.
Reflections of an Aspie Buddhist
As I’ve gone through my life with Asperger’s, I’ve struggled to find a belief system that reflects who I am as a person while also giving me something better to work toward. When I was an angry teenager, my worldview was centred on rage and resentment – on the idea that all of the problems and social ostracism I was going through were simply proof that I was smarter and better than everyone else. It was an attitude that explained my hostility toward the world while at the same time reinforcing it. It was not a nice place to be in, and it’s not one that I’m eager to go back to.
As I got a bit older, a bit happier, and a bit more able to fit in with others, this hateful worldview gradually faded away. But as life ceased to be an unending series of challenges and hardships, I, like many people no longer fully occupied by their misery, began to search for a new source of meaning. As the novelty of not always being treated like a social outcast wore off, I wondered what else was left for me. Career or money? Work is important, but I’ve always been someone who works to live. Helping others? I try to be a good person, but I often feel too pessimistic and too disconnected from other people to give as much as I should. Family and children? Owning two beautiful dogs is still as much family responsibility as I can bear to take on!
A couple of years ago I began seriously reading about Buddhism. I had first become aware of it back in my angry teenage days, but at the time its message of benevolence and self-discipline didn’t appeal to a young man consumed by his rage. But this time, something clicked. After treating my 20s as one big adventure, and having amused myself half to death, I was ready to hear the message that our attachments in life are one of the great sources of suffering – our attachments to the things we enjoy, to the things that cause us pain, and to ourselves and our egos. Because even good experiences cannot last forever, and losing the things that we’re attached to will cause us pain. After having focused so narrowly on myself – first on my problems, and then on enjoying a life mostly free from obvious problems – I was ready to take a broader view.
When someone would hurt my feelings – for example, by shunning me because of my odd mannerisms or my inability to make eye contact – I could step back and analyze the source of the pain. They may have hurt me, but what is the "me" that was hurt? It’s not easy, but I could try to dispassionately observe that the pain came from my attachment to myself, and I could choose to not validate it. I could refuse to buy into the narrative that every tiny offense against the ego must be defended at any cost.
When my meltdowns stopped in my late teens or early twenties, they were replaced with a kind of overwhelming flatness – The realization that I just don’t "feel" the same way as most neurotypicals do. Events that would lead other people to tears or fill them with joy would leave me completely unresponsive, and it made me feel like I was somehow defective. But reading about Buddhism taught me that there is nothing wrong with distancing yourself from the constant tug-of-war between conflicting emotions. Amidst a culture that teaches people to embrace their negative feelings as something that makes them more unique, Buddhism taught me that I can gently and compassionately know my sometimes flat, sometimes stormy emotions without identifying with them or getting caught up in them.
But Buddhism also teaches us that freeing ourselves from our negativity and attachments is only half the battle – once you achieve that emptiness, you need to fill it with real love and compassion for others. For someone who has always had trouble genuinely connecting with other people, this is definitely not easy – And loving all sentient beings would be a tall order for anyone! I like to imagine it being a bit like the Hippocratic oath: "First, do no harm." Reducing the harm we do to others when we’re getting caught up in our emotions and coddling our fragile egos is just the first step; but considering all the pain I’ve caused to other people by feeding that beast, I’d say it’s a very important step. Now that I’ve mostly calmed my inner demons to a gentle murmur, I think I’m ready to attempt the next step of opening my heart, no matter how daunting it might be. Based on what I’ve learned so far, I think it will be worth the effort!
Many people think of Buddhism as a religion, while others are quick to insist that it isn’t one at all – more of a belief system, a psychological theory, or a path to self-improvement. It’s true that Buddhism doesn’t exclude other religions; for example, some people even say that it’s even possible to be a Christian Buddhist. But on the other hand, concepts like reincarnation and karma seem to go beyond mere psychology. Thousands of years after Gotama Buddha’s death, people are still debating what these ideas really mean. I don’t know if I had past lives or if I’ll have future ones, but I can say that Buddhism has become an important source of guidance and inspiration in my life. It fits in with my experience as an Aspie without allowing me to be limited by it, and that is all I could possibly ask for.
A Worry-Free Summer
Many teens look forward to gaining work experience over the summer to better prepare them for life after high school and adulthood. If your teen has a disability, there may be an extra layer of concern about what the future holds.
