Wednesday, February 25, 2015

The One About The Sign

Scanning the sea of judgemental glares and planned ignoring, I looked for one person to tell me with their eyes, “I get it”. I wasn’t this child’s parent, but I knew everything about him except what is on his mind. “My Little Guy” was Autistic.  In the four years that I’ve known him, he was set in his routine and I knew it well.

Sporadic vocalizations despite the environment, rocking back and forth, waving his arms, pacing… All that I enjoyed as he never failed to smile. He called me “Pa-Een” and often wanted to cuddle and watch his TV shows. He loved van rides and Finding Nemo. In the four years, I guarantee you, I am the one that found Nemo. Not his father, not Dori, but me. I am the true hero.

The passengers on the TTC didn’t know these things. I wish they did. Perhaps then, they wouldn’t wonder why “I” would subject him to a hectic environment as the TTC. Why “I” couldn’t pay for a cab or carry the child. “I”, the perceived parent of Asian decent of Palestinian child huh? Well, since we’re assuming and this IS Toronto, okay.

"People fail to understand the difficulties of redirecting behaviour in public for parents and caregivers of Autistic children."

People looked at me, probably wanting to ask, “What’s wrong with him”, in which I imagined that I would reply, “Nothing, what the fuck is wrong with you?”. I would emphasize the word FUCK in hopes that the inquisitive asshole would be embarrassed and feel the wrath of judgemental glares as I just experienced. At times, I felt unsafe. What if some irrational person decided I or My Little Guy deserved a good push for being “slow”. Then, of course, I had to resort to thinking of some self-defence moves I thought I knew. I knew none.

I sat him down in a busy train on a two-seater. I stood holding on for dear life and watched him smile and be fascinated by a moving train. “I’m in the train”, I imagine he thought so, and loved it. The woman in the window seat shuffled over, clutching her bags and glared at him for a few moments from the side of her eye without turning her head toward his direction. Perhaps she was scared she was going to catch Autism. Catch Autism like catching a cold? If Autism could be cured with Buckley’s, despite how nasty the taste is, maybe I’d give My Little Guy some Buckley’s, just so I can ask him millions of questions like, “Remember that time you got mad at me for insert scenario here, why did you get mad? What did I do”, or “Do you really like Pizza? Or would you rather Pizza over the repetitive menu at the group home?” and “Don’t you wish they had Finding Nemo 2? Because I do”.

In his little hands were little lumps of cotton. He loved cotton balls. He took them a part in little pieces and through them in the air. Something about cotton fascinated him. He called it “Fluff”. I had Fluff. One day, I’ll let him play in a bathtub full of Fluff. Fluff made him so happy.

The Catch Autism lady shuffled again and looked at the cotton in his hand. He flailed his arms slightly and she twitched. Relax lady, if anyone is to hit you in the face, it’s going to be me. Or Autism, because you’re going to catch it. That’s how you catch Autism, it slaps you in the face.

Our stop was coming up. “Time to get off of the train in one minute Little Guy”, I said.

Pre-planned warning of change of environment… Reminder in 30 seconds… Reminder in 10 seconds…Reminder of what is happening at the time it is happening… Praise for completing the process of what was happening after it happened…Calm voice…Don’t hold his hand too tight… Don’t talk too much… Less instructions…

The steps I needed to take after each transition ran like an index scroll over and over in my head. Every minute I’m with this child, my mind is going and going and going. I have to make sure he is okay. I have to avoid tantrums, it takes a toll on him physically and mentally. I have to smile and praise him for complying with changing environments. I have to see the judgement in people’s eyes. I have to deal the idea that they think My Little Guy is intruding. I have to assume that he knows none of this.

The above was what was going through my mind during a 15 minute train ride with a child who was not mine.  Although we had a bond, he was not my child. At the end of my shift, I could go home. Yet, I felt defensive and offended by TTC passengers that dared to judge My Little Guy. Imagine how a parent of an Autistic child feels, especially a parent with a young Autistic child who has only a few years of experience learning about Autism, their child and living with the constant and unwanted suggestions and advice of others.

Farida Peters and her son

Farida Peters, a Torontonian and a mother to a 5 year old Autistic boy decided to take matters into her own hands. She wears a sign on her backpack alerting TTC passengers, “My son is 5 years old and has autism. Please be patient with us”. The little boy, donned with a Minion toque and backpack walks hand-in-hand with his mother. Under the sign is the International Symbol of Access. For all you who are unfamiliar with this, and more familiar with “The blue handicap symbol thingy”:





People fail to understand the difficulties of redirecting behaviour in public for parents and caregivers of Autistic children. Peters received some backlash for her sign, as critics accuse her of labelling her child.

Hi Critics, hi… Okay, labelling is likely the last thing on Peters’ mind as she cares for her Autistic son and battles the judgemental stares, impatient sighs and people like the Catch Autism lady. What is the difference of this sign and the Access Parking Pass? You people are not okay with this sign, but okay with the ridiculous stick figure stickers on the back of minivans. You’re okay with “Baby on Board” signs… Shouldn’t drivers be cautious whether there is a baby on board or not. The sign serves has a warning to others, who fail to understand, who lack compassion, or who simply did not know. It’s education. Peters stated that all she wanted was safety and comfort. In the parenting world, safety and comfort at the two things parents want for their kids among others. Why is it NOT okay for Peters to ensure her child is safe? Parents buy safety devices to prevent their kids from getting in the toilet or cupboard or outlets. This is Peters’ safety device. And she made it.

Some people just need a big ass sign to put them in check.


Referenced Article: http://www.thestar.com/life/2015/02/20/toronto-mom-carries-sign-to-alert-strangers-about-sons-autism.html

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