Deeply grateful

Posted on by Alex's mom

Nothing is more terrifying for parents than what comes out of their children’s mouths at the most inappropriate times. Even more terrifying is what a child with autism who is verbal may say as there is often no filter and they will express what they see and think – literally – out loud.

One summer when Alex was 8 years old we went over to our neighbour’s house to celebrate her birthday. It was a beautiful, sunny day and most people were milling around in the backyard. Alex and I found a spot to sit on her deck. My neighbour came over and introduced us to one of her close friends who was at the party. My neighbour’s friend was a very attractive, very shall I say well-endowed woman wearing a summer tank top that showed her cleavage.  I turned to Alex and said, “Alex can you say hello?” to which there was silence. His eyes were staring straight at her cleavage and he had a look of confusion on his face. I said once again, “Alex can you please stop staring and say hello”. He then squinted his eyes and outstretched his neck as if to get a more focused look tilting his head from side to side, scrunching up his nose to show a look of bewilderment.

My neighbour’s friend looked at me and I was waiting for her to say, “What is wrong with him? Can you tell him to stop staring?” Before she could say anything, I began to convey the usual “please excuse his behaviour, my son has autism and he sometimes…” when Alex looked up at my neighbour and said, “wow that is really deep!” and walked away.

Well this elicited bursts of laughter from my neighbour and her friend, which was of great relief to me. My neighbour’s friend said she understood and that my neighbour had told her all about Alex and she was very excited to meet him. Thank God for people who spread autism awareness and who show tolerance and understanding and can laugh with us. For that I am deeply grateful.

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Bikers and beer – don’t judge a book by its cover

Posted on by Alex's mom

No story is more “Alex” to me than the one I often repeat about the boys in the beer store. When Alex was about 6 years of age he and I and his sister, who was 4 at the time, stopped by the beer store on our way home. For those outside of Ontario, the beer store is where you purchase beer. I know it seems odd for most who can purchase beer at the local grocery store but we are special.

In any case, it was a hot summer day and there was a long line up inside. As we were waiting inside, Alex started to become quiet anxious (waiting was and is never easy for autistic children). Suddenly a very loud roaring sound turned everyone’s heads, including Alex’s, to the two bikers who pulled up right outside the front doors. Two very large guys dismounted their motorcycles and headed inside to the end of the line. One was covered in sleeve tattoos – quite colourful, scary looking snakes. The other had chains and a lot of stuff hanging from his belt as well as a very large belt buckle which resembled the face of the devil with its tongue sticking out.

Now most kids and adults would become nervous at the entrance of these two guys and most in this case appeared to do just that. My daughter quickly scooted behind me, peeking out to watch them. But Alex of course had no fear. Walked up to them as I called him to come back in line with mom. He stood right in front of the one with the snake tattoo and proceeded to run his hand up the guys arm outlining the snake with his finger. “Beautiful”, Alex exclaimed. “Is that the Apophis?” At this point the look of shock on the biker’s face was priceless. “Wow, little buddy, most kids are afraid of me,” said the biker “how do you know that?” “It’s an ancient Egyptian snake of evil,” said Alex. “I like your Diablo too,” he said to the other biker as he pointed to his belt buckle.

At this point both bikers were now in a pitcher’s position allowing Alex to explore their tattoos. I called for Alex to “stop bothering the two gentlemen and come back in line” to which the one biker said “no worries mom its cool”.

I had now placed my order, paid and was waiting to pick up the beer. I called for Alex to come explaining we had to leave. He began to walk away and then turned and in the loudest whisper voice yelled “hey, by the way, are you guys gonna rob this place?” The biker laughed out loud, as did most people in the store, and he replied “not today son, not today”.

I then grabbed the beer and grabbed Alex’s hand and with a beet red face left for the car. As we were pulling out of the parking lot we passed the two bikers and Alex stared at them and smiled. I looked at Alex in the back seat and thought to myself while he will never understand the expression “don’t judge a book by its cover”, due to how literal he perceives everything, that experience was a perfect definition for that phrase, one that we should all practice in life.

 

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online at www.bikersforautism.com

Italy vs. Holland?

Posted on by Alex's mom

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As a soccer fanatic this would no doubt be a great game but Italy and Holland have very different meanings in this story. Emily Perl Kingsley’s famous essay about ending up in Holland is a perfect way to explain how this story begins.

“WELCOME TO HOLLAND

by
 Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

In life there are always expectations and when they don’t quite get fulfilled we are sometimes left feeling angry, resentful of those who got what we wanted and mad at those who win when we lose. When you think of life as a soccer game, being on the losing team, should it be Holland, is not a bad thing at all. It would be a great blessing to be part of that team than not to be there at all. That is the perspective you have to keep in navigating through life with an autistic child. You may not be on the perfect team or the team that wins a lot of big games but you are very much in the game. You need to focus on the abilities of your team and celebrate them every chance you get.