World Autism Awareness Day 2016!

April 2, 2016 marks the eighth annual World Autism Awareness Day.  So f***ing what? Another cause; another "awareness" day.  Who f***ing cares? And as the mother of a child diagnosed as having Autism Spectrum Disorder (ASD) I never thought that those sentiments would be mine. But this year they were.  

I questioned whether there was any worth to putting into writing, yet again, how Autism has effected the life of my daughter and by extension myself, her father and her younger sibling.  I questioned whether giving voice to my rawest emotions and most vile feelings would offend the sensibilities of the few people who may read this.  And then I reread A Letter To My Daughter and I remembered exactly why it is that I bother.  

The reality is that life will not be easy for my child. I wish that I could pick her up and smother her in love and wrap her in self-acceptance and strength and courage and whisk her far away to a place where no one could ever hurt her.  But that is not reality.  And although there will be some walks that she will have to take alone, I promised myself that until the day that I drew my final breath I would raise awareness and understanding for her daily challenges, and fight for her acceptance and inclusion.  And to hell with the naysayers.

So today, April 2, 2016, marks the eighth annual World Autism Awareness Day.  And on this day I will make good on my promise and tell whomever will sit up and take notice the 3 things that every person needs to know about Autism.

1. What Autism Is

In the simplest possible explanation Autism causes a person's brain to not function how we would expect.  In more technical terms Autism impairs a person's neurological development, and can effect such things as social interactions and verbal and non-verbal communication.

For my daughter Autism has meant hours of testing with professionals from various fields, and even more hours of therapy learning basic skills that come inherently and naturally for neuro-typical children.  Before her Autism diagnosis, I can remember having to teach my child that when someone said hello to her, the socially appropriate thing was to respond hello back.  And I had to teach her that after unintentionally hurting another child, it was socially inappropriate to laugh or then become angry with said child as though they were the one that had done something wrong.  Interpreting social cues and non-verbal communication are daily challenges for my child and expressing thoughts clearly and understandably can be difficult. For her Autism has meant having to learn how to attempt to make friends, having to learn how to engage peers in conversation and having to learn how to sustain play with them.  

And it's constant.  Although the severity of the impairments may vary from day to day, it's always there; always my child's underlying current.  Autism continuously poses challenges in her everyday functioning and interferes in her daily interactions. And as her mother what choice do I have but to helplessly watch the scene unfold.  And this is my child's life.  Every day it is her life. 

Autism is also a giant black binder filled with every referral, every report, every assessment and every therapy plan ever made on behalf of my child.  It is countless hours and kilometers spent driving to appointments, thousand of dollars spent seeking the best advice and help possible, and more tears and more sleepless nights than I care to recall worrying about the well-being of my child and what the future holds for her.

2. What Autism Is Not

Autism is not predictable nor is it consistent.  It effects all whom it touches differently.  That is why persons with Autism are referred to as being ‘on the spectrum’.  Each persons’ symptoms and severity, thereof, differ.  Sometimes the difference is mild, other times vast.  

Autism is not a "made-up North-American thing", contrary to what uneducated persons post on social media.  Autism is not a disease, contrary to what an ill-informed youth told my daughter on the schoolyard.  Having Autism does not mean that a person is "retarded", may never go to high school, may never drive a vehicle, or may never live on their own, contrary to what the most ignorant medical "professional" I've ever encountered told me about my child.  Having a child with Autism is nothing like "thinking you were going to Paris and winding up in Holland”, contrary to what my daughter's second-grade teacher told me simply because my child didn't know where to put the eyes and nose on a cut-and-paste face.  And autistic behaviors and tendencies do not need to be "policed", contrary to what that dinosaur of a woman told me at the park because my child was having difficulty waiting her turn in line for the monkey bars. 

Having Autism is not the life that I would ever have chosen for my child.  But she's not alone. Statistics indicate that 1 in 68 children are diagnosed with Autism. Clearly Autism is not going away any time soon. 

3. What You Can Do

Be kind to those persons whose differences and daily challenges you may, or may not, understand.  If you cannot manage compassion for, or tolerance of, those persons, than at the very least treat them no less than you yourself would want to be treated.  And teach your children that every human being is deserving of respect, and that is never okay to belittle or bully someone because they are not like them.

Stepping outside of one's comfort zone is never easy.  But if you bear the discomfort, comfort will come.  Invite that child whom you know gets excluded from class birthday parties to your child's next one. Contact the parent of that child whom you know has difficulty making social connections and arrange to have them over for a play date.  There are some extraordinary persons within my community that have done just that for my child.  And let me tell you, there is no greater joy than seeing the smile that lights up her face from knowing that she is thought of, accepted for whom she is, and included.    

Not once have I questioned whether to accept my daughter for who she is.  As a mother I do not even believe that that is a choice that we are even given.  You just do.  I desperately wanted a child and I loved my daughter from the moment I realized that she was growing inside of me.  The fact that she was born with Autism Spectrum Disorder did not change that.  I am her mother.  She is my child.  And so it is that regardless of whether this blog falls upon deaf ears or not, whether it evokes change in just one person's perspective or not, until the day that I draw my final breath I will strive to raise awareness for all persons effected by Autism and continue to fight for their acceptance and inclusion.

THE VIEW

It has been nearly twenty years since I sat in a dark room, smoking cigarettes, flipping through an old photo album filled with pictures from my childhood. I stopped at a picture of my father holding my tiny hand in his. Beside the picture was written, “Hand in hand with daddy forever.” I ran my fingers over the page and wished that things could be that way again. But even though he was somewhere on this Earth, that was not possible. And so I sat motionless in the dark crying, waiting to fall asleep. Afterall, if the life that lay before me was not the life that I had envisioned, than perhaps the alternative was not to live it.  Perhaps the alternative was simply not to live.

Filled with loneliness and despair, I went to the medicine cabinet and gathered everything together. The pills, the capsules, the tablets—I  swallowed them all, and then I wrote my good-bye note.  Misshapen letters scrawled across the paper spelled out that I was tired; that all I wanted was to go to sleep and never wake up. I sat back on the couch, waves of blackness crashing over me. 

But there was this noise—this incessant ringing inside my ears that wouldn’t stop, that refused to be ignored. The telephone. And in that moment I made a choice. A choice to reach out and save myself. I chose to put the pieces of my shattered-self back together.

In that moment, had you asked me why people attempt suicide, I could not have narrowed it down to only one reason. I can now. The road to suicide is paved with traumatic loss and unresolved pain. My loss and pain came as the result of what I refer to as “the death of my family and friends.” 

At the age of seventeen my world imploded. The ever-pleasing, never-defiant Preacher’s daughter decided that she no longer wanted to be a member of the religious faith in which she had been raised. The day that my secret was revealed I sat opposite two church elders. A meeting had been convened for the purpose of deciding my fate. 

It had been brought to the elders’ attention that I had sinned. I had gotten drunk on a prior occasion, and they wanted me to repent. Simple. All I needed to say was that I was sorry. I desperately wanted to tell them what they wanted to hear, but I couldn’t. It would have been a lie, and I was tired of living a life that I no longer believed in. The tears pooled in my eyes, and when I was finally able to speak the words—“I am sorry for what you will have to do, but I am not sorry for what I have done”—I couldn’t stop them from spilling over and streaking down my cheeks.

There was nothing more to be said. The heavy silence that fell between us signaled that everyone knew what my pronouncement meant. I would be ex-communicated from the Church, my parents would disown me, and the only friends I had ever known would turn their backs and walk away from me.

People often look at me peculiarly when I recount “the death of my family and friends.” The notion of one’s family and friends choosing a belief-system over their child is so foreign to most people that they cannot relate. They can never know the tremendous pain that I felt then, and still feel even to this day. The pain, however, is no longer debilitating; it no longer threatens to consume me. There has been a transformation of sorts. A transformation that has been nearly two decades in the making—one breath and one day at a time.

For the first seventeen years of my life who I was, and what I was, had been defined in terms of religious doctrine. When I was stripped of that identity, I was “lost” and left to wander alone. The most important thing I came to understand with the passage of time, however, was that I was not the one in need of forgiveness and redemption. Even though others had labeled me a sinner and unworthy of membership within their group, I dared to define my own self-worth, the type of person that I would be, and the type of life that I would live.

When I uttered those life-altering words, “I am sorry for what you will have to do, but I am not sorry for what I have done,” I made a choice to walk my life’s path alone. That was not what I had envisioned for myself or my future. The alternative, however, was far more bleak—continuing to live a life that others wanted for me. Finally the time had arrived when being able to look myself in the face each day with respect and dignity took precedence over having the acceptance and approval of others.  

I used to believe that being true to myself had cost me more than it was worth. I no longer feel that way. Even when faced with expulsion from the only way of life I’d ever known, I remained faithful to what I believed in. In spite of the judgment pronounced against me, I never compromised myself. And although my spirit was crushed in the aftermath, in time it learned to soar higher than it ever had.

But this gentle current of despair kept swirling about my mind and body, seducing me with the promise of release from pain. I had but only to give myself over to the illicitness of the affair; allow myself to be swept out to sea.

But I was “aware”. And this awareness was gnawing at my nerve endings and alighting my mind with brilliant fire. The tide could carry me away, but I was aware that it could also wash me gently ashore, a place where I had once stood. I just needed to rise up and  move.  I needed to place one foot in front of the other, let the wet sand squish between my toes, and slowly make my way back toward solid ground.  

A wise man once told me that two people could stand atop the same mountain, but that the view, and what it meant to be there, would be different for each person. The one who had needed to fight to reach the summit would appreciate it far more than the person who had not. While I could never have imagined that I would have to climb alone, my view from the summit is incredible. It is awe-inspiring and beautiful. It is mine – I earned it.

The life-path that stretches out before me, as far as my eye can see, is full of endless possibilities. And I no longer walk that path alone. With me, hand-in-hand forever, are my two precious babies and my fearless husband. From atop my mountain the view is second-to-none.

A Little Lick

Sadly I have not posted a Mommee-Truth since returning to work outside of the home a couple of months ago. There's simply no time! But my brief interaction with a stranger today made me laugh aloud more than once and I promised myself I would take the time to share it in the hope that it put a smile on at least one person's face!

My job involves providing customer service and taking payment in return. Today I helped a colorful character who chose to pay using his debit card. The first time I put the payment through his card was declined. As is usually the case he wasn't sure why this had happened and so I asked if he would like to try again. The second time I put the transaction through it also was declined. The gentlemen was truly perplexed. He remarked that there was 'lots of money' in his account and that the transaction should go through. So I suggested he try a different form of payment - a credit card perhaps. Yes, he had a credit card. And although he had never used it before he wanted to give it a try. So I attempted putting the amount owing through on his credit card and that, too, was declined.

So far during the day I hadn't had any issues taking payment. I began to wonder if it wasn't an issue with the bank this person used. As he was sure that there was 'lots of money' in his bank account, I suggested that we try his debit card one more time. This time, however, I suggested that if he had pressed 'chequing' during the previous attempts, he should try pressing 'savings' this time. Sometimes people simply forget which account - chequing or savings - their money is in. I don't know if the gentlemen was listening to me or not, but out of the corner of my eye I noticed that he had inserted the chip-end of his banking card into his mouth and was licking it. I keyed the amount owing into the terminal as quickly as possible and prayed it would go through. This gentlemen's time and mine together needed to come to an end! And just like that my prayers were answered and the transaction went through. I finished doing what I needed to and handed the gentlemen his receipt. He smiled, winked, and holding his debit card up said, "I guess all it needed was a little lick."

Now professionalism mandates that I not give voice to the thoughts in my head.  Believe-you-me there were ALOT of thoughts! But at the end of the day I decided to give credit where credit was due - often times things DO work out better when you get 'a little lick'!