Guest post – The Year I Met Autism

A close friend of mine recently found out that her son is on the Autism Spectrum. She’s struggling with navigating talking about this in online spaces, because his privacy means a lot to her. And while she knows that there is no shame in the diagnosis, she’s only too aware that not everyone else is there yet. So she has asked me to post this anonymously in my blog, on World Autism Awareness Day. Please read, share, and be kind.

shelter

“What did you do today?”

It was the question I asked my son every night when he returned home from daycare, or “school” as we called it. Each night, without fail, he would repeat the same answer verbatim, “I played with cars with Josh”. Or there would be silence. I’m not sure what was worse.

“What did you do today?” we would ask over and over, until finally we just stopped because the answer frustrated us so much.

It was one of the things that made me know something was wrong. He would repeat what I referred to as a “bank of phrases”, each one used to get him through the routines of the day. And he relied on those daily routines, so much so that disaster would strike if we deviated from one task for even a minute.

“It’s time for my bath, you need to go home now,” he told his little cousins at a family reunion with my brothers two summers back. How adorable, everyone thought.

Then there was the intense focus on a singular interest. Months spent talking about nothing else except for his favourite movie. Nothing. Else. On the beach in Florida where the sun was shining and the waves crashing around us, “does Woody wear a cowboy hat? Yes. Woody wears a cowboy hat.”

“You’d think that he spent 24 hours a day watching this movie,” I told my mother. “He speaks of nothing else.”

And while there were hugs and cuddles, there were never any “I love yous”. I can count on one finger the number of times my son has told me he loves me.  He does though, I know this. And I love him, which is why I fought to find out what was wrong with my boy.

It’s Autism. That’s what’s “wrong”. Autism Spectrum Disorder (ASD). We’ve been processing this information for the past three months, and maybe I’ll get to a better place but right now it still really sucks. To be brutally honest, I never thought I would have to give more than a fleeting thought to International Autism Awareness Day. This was my sweet boy. My first born who had such a vast vocabulary at 18 months.  My baby who never wanted to leave my side, the gift life gave me that made me feel such pure happiness. I never thought we would meet autism. This caped monster that came in the night to steal all our hopes and dreams that we had for our son.

Autism means speech therapy, behavioural therapy, delaying his entrance into school so he can take part in intensive early intervention and managing the well-meaning but sometimes super awkward encounters with friends and family when telling them the news.

Writing is therapy for me, which is why on International Autism Awareness Day I asked my good friend to let me take up some space on her blog. You might ask what I know about autism, considering my child was only diagnosed three months ago, but you underestimate me and the power of the Internet. Here are some things I’ve learned on our journey thus far, and some things you might benefit from learning on this day:

Shit is confusing

Autism is a health condition in which no one has any answers and yet everyone has all the answers. So far I’ve learned that autism is genetic. That it’s not genetic, it’s environmental. That it’s a combination of genetics and environmental. Vaccines cause autism, vaccines in no way cause autism so shut down your crazy. Tylenol while pregnant causes autism. Tylenol for babies causes autism. Being induced causes autism. C-Sections cause autism. Fucking Bounce sheets cause autism. There is no cure for autism. But Natural Doctors might have things that can rid your child of autistic tendencies. Gluten free. B12 shots in the ass. Stool samples. And if you don’t do these things you are basically just giving your kid more Bounce sheets to roll around in.

Seriously. Shit is confusing. Luckily, I have people sending me all the articles on autism that exist on the Internet so that I can spend the majority of my time banging my face against my keyboard.

The Spectrum is Vast

One important thing I’ve learned is that there is no way you can generalize those who have ASD. Every kid on the spectrum is different. There are some commonalities to be sure, but the symptoms and behaviours are across the board. For one thing, don’t ask me if my son has a “special talent” cause you heard that “kids with autism all have a thing they do well”. Take your Rain Man stigma and check it.

Pity is the worst

We have some incredible friends who have responded so well to the news about our son having ASD. We’ve also had some terribly awful reactions that kept me up all hours of the night. Our son doesn’t need your pity (besides for having me as a mother). What he needs is for you to give him a chance at a playdate even though he might not be the most outgoing kid in the daycare class. He needs for you to not exclude him from birthday parties, because that really hurts. Please remember that our kids learn from us, so just because little Johnny doesn’t want to invite the weird, quiet kid from class to his party doesn’t mean that you should accept that. You know better, and you should teach your kid to know better as well. Better than any therapy in the world is the social interaction kids with ASD get from playing with their peers. Don’t just talk a good game about diversity and acceptance. Practice it even once a month. Trust me, it’s life changing for these kids.

Support is key

I don’t know what we would have done without our family and friends the past few months. Taking care of our younger child while we shuttled our son from one appointment to the next. Listening to me cry for hours on the phone. Coming over with a bottle of wine and talking about nonsense to take my mind off of the new path we were facing. Inviting our family into your home for afternoon get togethers or suppers to make it clear that our son would never be treated any differently. Most importantly, thank you for saying something. What has hurt the most is the people we’ve told who have chosen to say nothing at all. Who feel it is best to pretend that nothing has changed in our lives. It has, things have really changed, and calling to see how we’re doing would be a really cool thing to do.

So those are a few of the things I’ve learned that I felt important to share. Maybe next year I’ll have more insightful things to share about where we are with autism. Right now though, things are finally starting to feel ok. I can see my son again; I don’t look at him and see autism. I see his strengths, his character, and his drive. Those hopes and dreams we had for him are still there, but they are less vain. I want him to be happy. I want him to love his life and seek answers independently in order to satisfy his curiosity.  I don’t ever want him to change.

“What did I do today?” my son asked me at dinner last night after weeks of us not asking him the question. My husband and I turned to him, jaws dropped, before regaining our composure and engaging in the conversation. “What did you do today, buddy?” we asked. “I played smurfs with my friend and then I did craft,” he replied with a smile before following up with, “Do you like popcorn?”

It’s not one of those things you can put up on Facebook with a cute caption like, “Zoe is riding her bike!” or “Colin played his first hockey game!” but my son asking me if I liked popcorn and looking like he honestly gave a shit might be one of the best moments of my life.

That’s autism.

 

An open letter from Amarjeet Kaur Chhabra

a photo of Amarjeet Kaur Chhabra

I’ve received tremendous support from both friends and strangers while pursuing recourse from the NDP over the flawed nomination process which unfolded in the Scarborough-Guildwood riding where I put my name forth as a candidate. I’ve received even more support from array of citizens and friends when on advice from my legal counsel I reluctantly decided not to pursue my grievance through the courts.

Unfortunately, there were a few who suggested that I have no stomach for a fight or worse that I have somehow ceded to the NDP machine. Nothing can be further from the truth. To begin with, I took a lot of risks to even put my name forward as a candidate. There were party voices who tried to dissuade me from running. I had to consider that my own career could be at risk and many other factors that weighed in the decision to run.

Once the nomination process was over, both the riding association executives and I raised our concerns to the party secretary and when not given satisfactory answers, the riding association raised those concerns publicly. Again, had there been any outside influence for me to accept the outcome, I wouldn’t have continued with my fight. Finally, when all other avenues of recourse were exhausted without satisfactory answers to my concerns about the process, I sought legal advice. My legal counsel had a full and frank discussion with the NDP’s lawyers about the events that took place at the Scarborough-Guildwood NDP nomination meeting on July 7, 2013. I continue to have concerns about the process followed at that nomination meeting. However, in light of the circumstances, including the limited time before the by-election, I will not be pursuing legal action.

I have never claimed to be perfect. I have had my shares of mistakes. But, I have learned from them, and those who know me, know I’m a fighter. I will continue to fight flawed and unfair nomination process with all the means available to me, especially since I’ve been contacted by many others who experienced similar injustice in the past, with the hope of making this process more fair and transparent.

Amarjeet Kaur Chhabra
Candidate, Scarborough Guildwood by-election, 2013

The Unbearable Whiteness of Being – Guest post by Chris Dart

(AKA The Problem Isn’t That Adam Giambrone’s White, but His Whiteness is Part of the Problem)

Audra asked me to write a guest post on her blog based largely on two facts in my otherwise somewhat dull autobiography:

  1.  I’m a white man.
  2. I spent the first 19 years of my life, and several chunks after that, living in the former City of Scarborough. (Motto: “Scarborough — City of the Future!”)

I don’t think this combination of things makes me exceptional, but it has blessed me with some perspective. When you grow up as a white person in an environment were you are the minority, it’s hard not to be screamingly aware of your own privilege all the time. You don’t always see it when you’re small, but by the time you hit your teens, it’s pretty hard to miss the fact that you are getting a lot of breaks that your friends are not, for no reason other than your lack of melanin. You are constantly reminded of the fact that your friends and classmates are experiencing the world differently than you are. No one shoves it in your face, or accuses you of oppressing them. It just comes up. Small reminders work their way into every social studies class discussion, every drama assignment, every basketball scrimmage.

Hopefully, this experience will leave you with a few things: an urge to lend out your privilege whenever possible to create a more equitable world; an ability to put yourself in another person’s shoes; and the firm knowledge that the idea of anti-white racism is completely laughable (at least in North America).

Audra was accused of something like anti-white racism in her recent blog post about Adam Giambrone, former TTC Chairman and Toronto mayoral candidate, and newly minted Ontario NDP candidate in Scarborough-Guildwood.

She received some flack from various corners of the Internet for pointing out that Giambrone is a white guy, and the woman he beat for the nomination — both encouraging her to run and announcing his own candidacy at the absolute last possible minute — is of South Asian descent. People seemed to think that she was using his “whiteness” as an all purpose insult, or as a self-evident reason that he shouldn’t have run against her or received the nomination.

I have three thoughts on this:

  1. It doesn’t seem completely ridiculous that a party which claims trumpets values such as multiculturalism, gender equality and inclusion would do everything possible to encourage people of colour and women to run for office. At minimum, you’d think they wouldn’t understand the bad optics of having white guy jump in at the last minute and bump a non-white woman who seemed to have the nomination all-but sewn up.
  2. Calling Adam Giambrone a white guy isn’t an insult. It’s a fact. I am also a white guy, as is Ryan Gosling, Prince Charles and Henry Rollins. I’m not offended when people call me a white guy, and I’m going to assume Ryan, Chuck and Hank aren’t either, although I haven’t asked them.
  3. Giambrone’s whiteness doesn’t mean he can’t represent the riding — which is over 65 per cent visible minorities — but it is part of the reason he is the most awkward fit imaginable for the job.

To put none too fine a point on it, Adam Giambrone isn’t just a white guy, he’s a fancy downtown white guy. He’s trying to represent a riding that is poorer than the provincial average, overwhelmingly non-white, and just about as far from downtown as you can get without leaving the city. (Pickering-Scarborough East is further, but as the name implies, two-thirds of the riding is in Durham.) He is a “transit guy” running in a riding where transit is so unreliable that car ownership is near-mandatory. He is a career politico/trained as an archeologist running in a riding where the most common job categories are manufacturing, retail and health and social services. He could not be more the polar opposite of the statistically average resident of Scarborough-Guildwood if he tried. And I feel like he may know it. Why else would he refuse to commit to moving to the riding if elected?

That’s the thing. Adam’s espresso fed, well-tailored, downtown fancy whiteness wouldn’t even be an unforgivable sin if he acted like he really wanted to be part of the riding. If he was stoked to buy a house off Kingston Road, if he told folks he spent 90 minutes taking the TTC from downtown, if he expressed outrage at Toronto Police Service’s practice of “carding” the neighbourhoods young men, it would be hard to take shots.

After all, it’s not like a white guy has never represented a majority-minority riding before. In fact, it’s happening in Scarborough-Guildwood at the federal level. Liberal MP John McKay is just about as pale as they come, and has been winning the riding, and it’s predecessor Scarborough East, by healthy margins since 1997. Here’s the difference between John McKay and Adam Giambrone. John McKay is a product of Scarborough schools who did his undergrad at UTSC. He’s forged links with the various cultural communities. He was a vocal opponent of Bill C-49, which essentially turned refugees into criminals. He’s gone out of his way to draw attention to the Sri Lankan goverment’s treatment of the country’s Tamil minority, and urged Canada to respond. There’s no doubt in anyone’s mind that John McKay is one of them.

Adam Giambrone isn’t. As far as anyone can tell, he’s never had any interest in the riding until he thought he could win it.

Chris Dart, with the love of his life ... my cat Zoe.
Chris Dart, with the love of his life … my cat Zoe.

Chris Dart is a freelance journalist, political nerd and obsessive Raptors fan. He’s also a proud graduate of Scarborough’s Wexford Collegiate. He has the letters “COTF” tattooed on his right wrist. You can guess what it stands for.  You can also follow him on twitter @ChrisDartCOTF [Also, Chris and I have been dating for nearly a year. But he did not write this post to rescue me. – Audra]