I'd like to introduce you to my new friend SARAH. She's going to be staying for a while. She's moved on in to my house and now has her feet up on the coffee table as I write this. It doesn't look like she's going anywhere anytime soon. That's what she thinks.
Funny thing about SARAH is the longer she stays, the better the visit ends off. But while she comes in raging like a bull in a China shop, she often leaves with hugs and kisses and a sense that all will be well. But we're not at that part of the visit just yet. My wife and I knew SARAH was planning on making an appearance sometime in the New Year. In fact, we've been anticipating her visit for about 10 years now. Her plans though really didn't solidify until about a year ago. At that point, we started mentally getting ourselves ready for her stay. But no matter how prepped we were, her arrival was still a kick to the gut.
Five days ago, my 10 year old son was diagnosed with Asperger's syndrome; a mild form of autism. In brief:
Asperger syndrome is a form of autism, which is a lifelong disability that affects how a person makes sense of the world, processes information and relates to other people. Autism is often described as a 'spectrum disorder' because the condition affects people in many different ways and to varying degrees.
Asperger syndrome is mostly a 'hidden disability'. This means that you can't tell that someone has the condition from their outward appearance. People with the condition have difficulties in three main areas. They are:
- social communication
- social interaction
- social imagination. (http://www.autism.org.uk/asperger)
While my wife and I had our suspicions; she much earlier than I, it was still a slap in the face when those words spilled out of the Psychologist's mouth. "Your son has Asperger's Syndrome." Somewhere in my mind an imaginary phone began ringing.
'That's SARAH calling. She's finalized her travel plans and should be here later this afternoon.'
"Your son has Asperger's Syndrome."
'I'm not sure if we can handle having her visit. There's too much to do. She'll only get in the way of things!'
"Your son has Asperger's Syndrome."
Driving to work after the diagnosis was an odd experience. My wife was on the phone with her Mom. The radio was playing but I can't remember what was on. I remember gliding through traffic and eventually showing up in the parking lot. It was freezing outside that day and regardless of how hot the car heater was blowing, I felt cold....numb. There weren't really any tears shed nor many words spoken in the car that day. How do you react to something that you saw coming from 10 miles away? Nope. There'd be plenty of time for all of that once SARAH got here.
I finished work and was in the process of driving home with the family (they had picked me up after work) when SARAH showed up. I had stopped to pump gas when she tapped me on the shoulder to say Hi. An overwhelming sense of sadness came flooding in; like a weight had been dropped into the pit of my stomach. The first phase had begun.
I should clarify. SARAH is not a person. She is not even a She. She is an it. A concept. An idea. SARAH is what I use to classify the 5 stages people go through when dealing with a traumatic event or loss on some level. Sadness, Anger, Rejection, Acceptance and Healing. The time needed to move from phase to phase is as unique as the person who is going through the process. Needless to say, SARAH has so far been able to manifest in her first two phases. It really comes out of nowhere and there's nothing you can do but roll with it.
I've been waking up late at night (I'm not sleeping terribly well these last few nights) and ask myself....'What's next for our boy?' The long and short of it is that he will never be "cured" in the traditional sense. There's no magic pill that makes it all go away. At least that's what the experts say. But I have hope. Maybe that's SARAH making her presence known and showing me her "Rejection" side. I denounce the possibility that there's no possibility for my son to wake up and snap out of it. I think I'll probably always reject that idea on some level.
My wife and I are doing our best to begin to adapt our lifestyle, routines and household to this new and strange disorder. While nothing drastic has changed, the diagnosis; the stigma around the word has us looking at the world through slightly different glasses than before. We're taking steps to help him more with school, chores and social interaction in general, but it's an uphill battle.
Imagine a typical 10 year old boy; full of questions, mischief, humour and heart. Think about how they thrive on social interaction; hanging with their buddies, playing sports. Imagine them collapsing into bed exhausted at night to dream the night away after a hard day of playing. Now imagine a child that has no 'off switch'; no ability to recharge because their mind never stops working….ever. A child with all the hopes and ambitions as other typical 10 year olds but with an inability to read social cues; to understand why their behaviour and actions come across as odd or weird or disruptive. An inability to make and maintain friendships. There's no happy ending right now....only adapting and coping.
There's a whole community of Parents with Asperger children out there. They affectionately refer to their children as "Aspies". Cute. But at this stage I find the name offensive and not much classier than calling someone a Retard. They speak about the uniqueness of their child and how they will grow up to be Professors or Rocket Scientists or something else amazing. But truth be told, not every child will be so lucky. Some will never be able to live an independent life.
With the proper social coaching and care he’ll not just be able to cope but thrive. They say 1 in every 150 children in North American is affected by the Autism Spectrum Disorder. Our boy just happens to be one of them.
My hope is that SARAH will eventually pack her stuff and move on to some other poor bastard family. She's not really welcome here anymore. In the meantime, we'll continue to learn and love as best as we can.