A conversation on a train; Remembering my thoughts on Autism before it became part of my life.

Here are two things you should know about me before I delve into this post.

1) I read a lot. Now, I am far from scholarly, but I have always enjoyed reading. I find it relaxing, exciting, creative and personal. It is something almost secret you share with the Author. No two people see the story exactly the same.I love it. Avid reader. That is me.

That’s Me!

2) People must find my persona to be warm and inviting because stranger talk to me everywhere I go. (How surprising this might seem to some!) The grocery store, gas station, drug store, walking down the street, on the subway on the GO train….I love to entertain on the GO! An hour to learn something about someone new. I often embrace this. Sometimes, not so much and I have a hard time convincing people to stop talking to me once they decide they want to… mostly it is enjoyable and I relish the opportunity to experience life from someone elses eyes.

It has been almost 5 yrs but I remember this conversation so vividly.

At the time, there was a sense of importance to the shared time, I didn’t truly understand it then, but just something struck a chord and it stayed with me. Today, I still see the mans pleading blue eyes. Eyes that were searching mine for an answer…one I didn’t know I’d be better prepared to give only 5 years later.

We clambered aboard the 15:13 Lakeshore East to Oshawa.

I was a few months pregnant with baby number 3 and hot and tired from racing to the hourly train to get home to my two boys, 2 1/2 and 1.  I flopped into my seat and tried to cool off, leaning against the smooth, refreshingly chilled glass of the window and closed my eyes.

When I opened them, his eyes caught mine and locked up my gaze. I smiled, as I often do, it is just a natural reaction. His face relaxed slightly, nervously almost as if he was afraid to let his guard down.

“I’m sorry, I’m a mess” I mentioned as I wiped the beads of sweat off my forehead (I was always sweating back then pregnancy hormones not my best friend!) “Rush, rush, rush  all day long…I need to be a stay at home Mom!” I joked.

He smiled politely back. “you have kids, too” he mentioned. More like a confirmation then a question.

“2 boys with a 3rd on the way” I patted my tummy gently.

“I have a daughter” he responded with a shy smile.

My mind started processing. He wasn’t flirting, he was soft and kind but there was something else….something in the background that really was leading the conversation. I couldn’t grasp it but I felt it was not a bad or negative driving force so I smiled back and continued down the path we had started down together.

“How old is she?” I ask.

He smiled again. Bigger. Proudly..but a hint of something darker. More troubling.

“Hannah is six. She is our pride and joy.”

“Amazing! I bet she is lovely. I see you are very proud, your face lights up when you say her name.” I comment softly, meeting his blue eyes once more.

Again, something darts across his thoughts.

I smile softly, my eyes implore his, nudging him to share if he would like to.

“She has Autism” He adds quickly, looking away into the dark waters of Lake Ontario as we speed by.

“Oh! well, that is interesting! I’m sure it is a little challenging but..”

“It is” he answers a little too quickly. “But you know, we are doing well, and she is doing well…”

“I’ve read that it is like being in your own world..” I answer without thinking, my voice soft, and confident, unfailing. Just a thought I had and I innocently share.

“It really is. Sometimes she is just so hard to reach…” He looks off to the water again. His hands folding over and over again quietly in his lap.

Right then, I know now I missed a BIG segway into the personal struggle of a parent of an Autistic child. Of course, I had no idea then. I had no real knowledge of Autism  nor did I know truly what that man was saying to me without saying it.

I often think back to this train ride and I still can see his face so clearly. He was asking for assurance. He wanted to be able to say even a miniscule amount of the thoughts that he felt and could never say to his Wife, parents, children even friends. He wanted to relieve himself of the guilt of feeling scared, ashamed, short changed, imposed on.

I just didn’t know then.

I often wonder if I added to his pain with my comments. I know he didn’t think I was being hurtful, I could see he was happy to have someone to talk  to and we talked about his daughter from Union to Oshawa…an hour train ride. She seemed like a beautiful child worth all the pride in her Fathers face.

recently, I considered this again and took it one step further to look up the literal meaning of Autism. Here is what I found:

Where Did the Term “Autism” Come From?

The word “autism,” which has been in use for about 100 years, comes from the Greek word “autos,” meaning “self.” The term describes conditions in which a person is removed from social interaction — hence, an isolated self.

In the 1940s, researchers in the United States began to use the term “autism” to describe children with emotional or social problems. Leo Kanner, a doctor from Johns Hopkins University, used it to describe the withdrawn behavior of several children he studied. At about the same time, Hans Asperger, a scientist in Germany, identified a similar condition that’s now called Asperger’s syndrome.

  • (A history of Autism   ©2005-2012 WebMD, LLC. All rights reserved.)

So, it seems I knew the ‘definition’ of the word, and I had seen “Rain Man” and “Mercury Rising” so I knew like “NOTHING” about Autism really. And I don’t feel as sheepish as I would have because I know being a Mom of an  Autistic child how very limited information is out there in the world about Autism.

We just don’t talk about it.

Parents, especially new parents don’tever want to consider the fact that 1-88 children have Autism today.

Parents do NOT want to talk about their children being different. No Sir, they don’t. Who can blame them?

We do though need to know about Autism. We need to know that IF our child has Autism, there is nothing we did to cause it and it isn’t something that will get better and go away.

We need to notice the signs and then go and get help so out children have a better opportunity to thrive. And thrive they will!!

We need to stop being afraid and to learn all we can. It is so imperative. I can’t stress that enough. And here is why…

You may not be the 1 in 88 that has Autism but I can guarantee you that Autism will touch your life.

It may not be your son or daughter (boys are 4x more likely to have Autism than girls) but you may have a relative, a friend, a co-worker, a neighbour who does and it is YOUR job to help that parent remember that it is not shameful to have an ASD kid. It is YOUR job to be a friend to your friend even though they have Autism in their life. They need you more than even and trust me, they will never ask you for help or a shoulder to lean on and an ear to listen to their fears and worries.

Your children will move through school with a child with Autism. It is not an IF. It will be a certainty. You need to educate your children, let them know that kids on the spectrum are kids JUST LIKE THEM that have a more difficult time socializing and it isn’t instinctual to make friends. BUT man, do they want to make friends. Just like everyone else.

The sad thing is, they might not.

Teach your child acceptance so that our children will not be bullied for thinking differently. So our children will not be lonely and sad for acting a little odd. So our children are as confident as yours.

The best gift you can give is understanding and acceptance. To the parents. To the ASD* kids.

The best gift you can give parents of ASD kids is the gift of acceptance too. Autism can isolate. I can tell you that first hand. Don’t think we don’t notice the invites out, over for dinner, to a BBQ have dwindled or stopped. Don’t think we can read the pained look and terror on your faces when our child has a melt down at the Wal-Mart or at the neighbourhood park. Don’t think the laughs and giggles don’t hurt at the concerts and school outings. We fortunately just have too much pride to say so.

I wish I would run into that man again so I could tell him all the many things I know to say now.

To tell him he is doing a wonderful job and his Daughter is going to achieve really great things. That Autism is a blessing, and like every blessing there are hard times and struggled but with perseverance happiness with be your reward. To tell him to stop beating himself up. He didn’t do anything wrong. He is doing everything right.

AND most of all. That his Daughter is a gift. Enjoy her for all the many amazing things she is and will be.

* ASD- Autism Spectrum Disorder                The autism spectrum or autistic spectrum describes a range of conditions classified as pervasive developmental disorders in the Diagnostic and Statistical Manual of Mental Disorders (DSM) (http://en.wikipedia.org/wiki/Autism_spectrum)

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6 thoughts on “A conversation on a train; Remembering my thoughts on Autism before it became part of my life.

  1. My son, Cameron, is seven years old and was diagnosed with Asperger’s Syndrome in 2009, just after he turned 5. I remember being devastated by the diagnosis. I cried, I researched, and then I did everything that this wonderful child needs for me to make this a safe and happy world for him.
    He is a true blessing and light in my life. I really think he is God’s way of saying “I love you, my child.”
    When he was diagnosed, I got a lot of comments like, “What’s Asperger’s Syndrome? What can you do now?”
    I wrote my book, Cameron’s Journey, to answer some of those questions, and to offer my support and guidance to those who may be in the same boat.
    You have a friend and a source of support here, if you want one. Blessings upon you and your family!

    • I basically did the same thing, it is like Mother’s instinct…figure it out, knowledge is the key right?
      Thank you for sharing and I cannot WAIT to find a free moment to review your blog! It will be wonderful to gain your insight . Thank you! Blessings to you and yours as well.

      I would love to gain a new friend and support, I think we can be strengthen by shared experience, and that knowing that someone truly understand can move mountains!!

      A

      • I look forward to our friendship. I joined a few support groups on Facebook. They have been a great source of strength for me. I developed some really close friendships. So close, in fact, that when I wrote my book, I mentioned a lot of them in the acknowledgments section. A lot of people have been there for me. That page had over 70 names on it!

  2. i’m glad you shared again, i missed it the first time. it’s amazing how conversations can hold a different depth when you’re at a different point in your life. much like the same book can be read so differently by each person who reads the same words.

    happy new year amanda, to you and yours.

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