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Visiting Disney World with my Asperger’s son triggered an epiphany


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I'm not sure when my profound sense of guilt was "built" into my brain, but somewhere along the path of life I was bestowed with a very strong sense of feeling badly when I wasn't doing things the way I felt they should be done.

A forgotten birthday card or unreturned e-mail has been known to keep me awake at night. And while I admit that my overactive guilty conscience could be taken care of with a little more planning and less procrastination, I often feel trapped by the mysterious standards that demand we all behave in a relatively timely, civil and expected manner. Is it possible to live a guilt-free life?

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It was with this heightened sense of wrong- and right-doing that I headed to Disney World with my family last March Break. My wife and our two sons were looking forward to a few days of theme-park fun amid the hordes of sun-soaking vacationers. To deal with the hordes, we had in our hip pocket a secret weapon – one that would propel me past the sanity-sapping lines, but headlong into a very personal and, of course, guilt-inspired epiphany.

You see, our younger son has Asperger's syndrome, and it had come to our attention that we could visit guest services at the parks and receive a pass that would send us to the front of the line for all rides. In the past our son had, in fact, managed to endure lineups that would bring a "neurotypical" adult to his knees. But on other occasions, he had declared at the top of his lungs that not only were we the worst parents ever, but that anyone who wanted to go on this ride was an idiot.

Clearly, it could go both ways – but did this developmental and mostly invisible disability truly merit an express pass to the front of the line?

Though on one hand the Disney offer seemed like manna from heaven, I couldn't help feeling I was taking advantage of my son's condition.

My guilt was compounded when the four of us, all able-bodied, lined up alongside the wheelchairs of some clearly ill and suffering children. Almost as bad were the stares of hundreds of people waiting in the regular line as we jumped the queue – sometimes right onto a waiting car on the roller coaster. Who were we and how did we rate special treatment?

Thankfully, staff at the parks never questioned us, always simply scanning our pass and greeting us with a cheery "Right this way." If they had shown any hesitation, it might have sent my guilty conscience into a time-warping tailspin, reconnecting me to the red-faced days of getting caught underage at the beer store.

But as the days unfolded, and lineups were leaped with every flash of our pass, I began to let go of my anxiety about breaking the rules of what I imagined was normal behaviour.

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Ever since my son was diagnosed, I have fought the idea that we are not capable of leading a "normal" life, and I have imposed upon him and my family the expectation that, despite his condition, we would operate the way any other family of four should.

We could go to theme parks, but we would stand for hours in line because we needed to earn the chance to ride like everybody else. Because if I started to admit that maybe we needed some help in that process, if I was willing to accept an acknowledged bending of the rules, that would only confirm an autism diagnosis that I was more than happy to deny.

But as much as I wish our lives to be normal – without aid or intervention – that wishing only creates a greater sense of disappointment and stress when things come off the rails. When my son screams bloody murder at being substituted in house-league soccer, and my wife wrestles him off the pitch in full tantrum, I sweatily pan the crowd, convinced some do-gooder has Children's Aid on speed dial.

After having far too many good meals go pear-shaped when the chicken fingers were not as expected, we now eat at restaurants armed with books or electronic distractions to ward off mid-meal freakouts. It's not perfect parenting by any stretch, but we are so often caught off guard with respect to the trigger that we've had to leave our parenting-school diplomas lying in tatters as we work to survive the moment.

And so it was, on one particularly sunny day last March, after a series of gloriously goofy and fun family moments, that my insidious feeling of guilt started to lift, just like my stomach on a backward-looping roller coaster. With every beautiful smile on my son's face, realization after sobering realization crept into my previously watertight world view.

Maybe it is okay to ask for help sometimes. And maybe it is okay to admit I have a son with Asperger's. And just maybe it's okay to use a pass that is designed to allow kids like mine the opportunity to enjoy the theme-park experience without being overwhelmed by lineups and crowds.

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Quite suddenly, in a place far removed from the stresses of daily life, the guilt that was forever haunting my actions subsided with the acceptance that life doesn't have to be quite so hard if we allow ourselves to be helped.

Maybe the guilt-free life starts when the need for perfection in self, and son, ends.

James Darling lives in Toronto.

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