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'!

We Get But One Life

Today marks an anniversary of sorts for myself.  On October 22, 2013 my life changed forever.  It was one of those life-changing events that you don't plan to have happen, or even want to have happen. It just does.

Sometime after dinner on October 21 when the kids had gone to bed, I had begun putting together lunches for the following day.  Suddenly it was very difficult to move my right wrist.  And when I did try to move it, it was quite painful.  My first thought was that my carpal tunnel was acting up.  I had never been officially diagnosed with carpal tunnel but years of clerical work had taken their toll on my body.  But that would have been odd.  I was currently on a leave from work so I had not been typing or doing any of my usual job duties that would have aggravated things.  My next thought was that perhaps I had broken a small bone in my wrist.  A few days prior I had fallen down the stairs and reached out with my hand to brace my fall.  Had I broken a bone then and hadn't realized it?  My thoughts went to a fellow co-worker describing how she had fallen in the shower and not realized until a few days later that she had indeed broken a small bone in her wrist.  Whatever the case I had things to get done and I did not have time for nursing what I was certain was nothing.

In an attempt to get fit and healthy I had recently begun working out with a personal trainer. Although I was feeling slightly nauseous (which I attributed to the smell of the fish cooking in the oven) I made myself go down into our basement and complete my daily workout.  I had difficulty getting my right workout glove on and during the workout I used my right hand and wrist as little as possible.  Getting my glove off at the end of the workout was even more difficult and I noticed that there was a "bump" on the top of my wrist.  I thought it was a "Bible bump"; a ganglion cyst that used to be treated by striking it with a large, heavy book (i.e. a Bible) so as to rupture the cyst and cause it to drain.  But then again what did I know?  It was another work colleague who had informed me about such bumps.  So given that my wrist was swollen and aching, I did what made the most sense - I iced, took two Advil and went to bed.

Fast forward to approximately 1 o'clock in the morning.  I was sleeping and suddenly there was my young son trying to crawl into bed with me.  Call that Divine Intervention.  I know that it was a Higher Power that sent my son into my room to awake me.  As soon as I awoke I knew that something was very wrong with my wrist.  What happened next and how I ended up at the hospital is neither here nor there.  Suffice to say that within a very short period of time the hospital's ICU Intensivist was at my bedside telling my husband and myself that I was "a very sick girl".  He said that I had necrotizing fasciitis - flesh eating disease - and that surgery would be required.

I'm Going to be Okay!

There are many things that happened from that moment on that will remain with me forever.  And there are several things that I cannot recall.  What matters most, however, is that when I was finally taken off of life-support and could make some sense of where I was and what had happened, I was surrounded by the people who mattered most in my life and my arm and hand were still attached!

Today is October 22, 2015.  Some days it is hard to believe that two years have passed since that most unfortunate incident.  And other times, when I catch an adult staring at my scars, when a child asks, "what happened to your arm?", when the weather turns damp or cool and my hand seizes up, when I catch myself thinking about the skin graft and the numerous operations and procedures, I remember every single one of those 730 days that have comprised the past two years.

The "truth" is that we always have a choice as to how we will respond to, and feel about, what we experience in life.  People tell me that I am "strong"; that they are in awe of the recovery that I have made.  The truth is that I am no stronger than any other person.  I did what I had to in order to survive and be a mother and a wife to the people who needed me most.  That being said, I definitely experienced dark times.  No one stares death in the face and walks away unscathed.  And while I believe that it was natural and necessary to grieve the loss of something I once had - an unmarred arm with a beautiful tattoo of my Nana - there was nothing to be gained from wallowing in self-pity and anger.

Anything Is Possible

My experience made me sit up and take a long, hard look at my life.  I kept asking myself, "If this had been it, how do you feel about, or what do you have to show for, the life that you lived?"  And the truth is that I wasn't very happy with the answers.

We get but one life.  It's such a simple fact and one that I took for granted until now.  I am finally chasing my dream and pursuing my love of writing.  I applied for, and was recently accepted into, a Master's program.  And at the ago of 40 I just completed my first 1/2 marathon.

So today marks my two-year anniversary.  Today I remember what "pain" truly is -  I think that's inevitable.  But I also remember the first time my kids were able to come and visit me in the ICU - it was Hallowe'en night.  I remember the first Tim Horton's coffee that I was allowed to drink and that was brought to me by my dad.  I remember the husband who sat by my side every day while I healed.  And I remember the friends and work colleagues and strangers who sent up a multitude of prayers on my behalf.

Today I remember that I survived!

God bless.  

Thanksgiving Prayer

Dear Lord,

Take my hand and show me the way.
Hear my prayers
And shoulder my burdens.
No matter the struggles I face,
Knowing that you are by my side
Fills me with strength and a renewed determination.
Use me in your service to
Love, accept, and give of myself unconditionally.

To You go the praise and the glory.
Amen.

With Growth Comes Awareness

No matter how you feel about it as a parent, the day is going to come when your young child “discovers” his or her genitals.  I grew up in a home where the understanding was you do not touch yourself, period!  My husband says that there was no “understanding” in his home - they just didn't talk about it, period!  It was surprising then that both my husband and I agreed that it was “natural” for the kids to touch themselves and that we were not going to reprimand them for doing so.  They just needed to follow two simple rules:  1. any touching needed to be done in the privacy of their own bedrooms, and 2. when they were finished they needed to wash their hands!

This sudden awareness of our kids’ gave rise to conversation about the terminology my husband and I would use when speaking to them about their body parts.  We agreed to use the anatomically correct terms.  That being said, both kids knew that boys had penises and girls had vaginas.  Imagine my surprise then when my five year old son, who was cuddling with me on the comfy chair, pointed to his penis and asked, “Is this your junk?”

Your “junk”?  It wasn’t that I was shocked or appalled – I thought it was hilarious.  I was surprised, however, because I had never heard him use that term.  While I admit that on occasion my kids have heard some pretty colorful language in our home, penises and “junk” did not get mentioned in the same sentence.  So I quickly deduced that this was a term he had picked up on the school playground or from the neighborhood kids.

“Some boys might call it their “junk”,” I said, “but that’s not what you call it.  It’s your penis.  And remember that you do not need to be talking about it with, or showing it to, anyone outside of this home!”

Were we getting ready to go somewhere?  I don’t know.  But shortly after that exchange my son was stripping out of his pajamas to change into other clothes.  That would have been fine except that suddenly he was naked, spread eagle on his back on my comfy chair, rolling his “junk” around in his hand!

“That is not appropriate!” I shrieked in my “outside voice”.  “No one in this family wants to see that.  Close your legs and get your clothes on!”

But the fascination of being able to roll his testicles around was just too much for him to ignore.

“Is this hair?” he asked as he craned his neck around his raging erection to see the baby-fine, barely-visible blonde hairs on his scrotum.

“Yes it’s hair,” I answered.  The same baby-fine, barely-visible blonde hair that was atop your precious head when I squeezed it out of my vagina!  Of course I didn’t say that!  But I did finish with, “Now get your clothes on and go wash your hands!”

Why was this so difficult?  We had two simple rules:  1. Touch yourself, play with yourself – whatever!  But do it in the privacy of your own bedroom and 2. Wash your hands when you’re finished!  And why was I the one having this conversation with my son when his father was sitting just feet away at the kitchen table, head buried behind a magazine disguising his laughter as a coughing-fit?  Thankfully it did not take long before my son finally had his clothes on and things were back under control.

But then I heard my five-year-old son say as he walked over to the kitchen table, “Dad, I have hair on my junk.”

Dear Lord, give a mommy strength!  I had to leave the room.  There was nothing that could have stopped the laughter that erupted from my throat once I was safely behind a closed door.  But here’s the “truth”:  Children grow and change and there is no stopping that.  Growth and change begets discovery.  As parents we always have a choice as to how we will respond to, or handle, that new-found awareness.  My husband and I chose to respond in a manner that did not berate, chastise or humiliate our kids, and in a manner that gave them knowledge and understanding. 

So until the next revelation that my son or daughter inevitably comes out with, this mommy will continue to tell it like it is – junk, hair and all! 

A Letter To My Daughter

Hey Baby,

It’s mommy.  This letter is to you, and about you, but I have no intention of your ever reading these words.  More than anything I want you to know how much I love you and how proud I am of you every single day for both your smallest accomplishments and your greatest achievements.  I am, and will always be, your biggest cheerleader in this life and wherever possible I will protect you from the ugliness and the cruelties that will inevitably come your way. 

You have Autism Spectrum Disorder.  You know this.  I have explained it to you in the simplest way I can.  You know that how your mind thinks and how your body acts is sometimes different from those around you.  Although your Autism makes you different, you must always remember and believe that you are never less!

You are getting to be such a big girl – 8 already!  And as you get older I see that you are more in tuned to the actions of others towards you, and the comments said to you, because of your Autism.  I listen calmly while you recount how those girls told you that you couldn’t play with them when you asked.  And I try not to react when you tell me how that older boy at school was mean to you and told you that you had a disease.  While you cry and try to piece together your fragmented thoughts so that you can give voice to them, I do my best to comfort you.  I do my very best to make you believe that you are beautiful – inside and out - and perfect just the way you are.  It is not you that has the disease, it is them.  They are sick with ignorance and unkindness.

What you don’t know is that long after I have dried your tears and done my best to calm your spirit, I sit alone on the front porch or lean against a door frame and cry.  I sob, actually, until the tears are sliding off of my chin and I think that it is possible to feel my heart breaking.  The pain I feel for the indignities you suffer on a daily basis, and will have to endure for the rest of your life, cuts me to the core.  And there are days when overwhelming sadness threatens to engulf me and I’m not certain if I’ll be able to put up a brave enough front for you not to notice.  But this part of me you’ll never see.  The part of me that hurts for you, cries for you, is enraged for you - that part of me I will keep hidden from you.  I have to be your protector and your stronghold, your soft pillow to land on.  I have to be your mother.

What I also can’t tell you is that having Autism is not a life I would ever have chosen for you.  Do you remember a couple of years ago when I was so sick and in the hospital?  At the time there was the possibility that I might have lost my arm to disease.  On more than one occasion I have said that I would have given my arm if it would have meant that you did not have to live with Autism.  But we don’t get to make those choices in this life and so while my pain was temporary, yours is ongoing.

And it’s not just kids who do not understand your differences and who can be so cruel with their words and actions, it’s adults as well.  You will never know about the pediatrician who told me to prepare myself that you might never go to high school and who called you “retarded”.  You will never know about the school teacher who described to me the experience of having a child with Autism as “thinking you were going to Paris and winding up in Holland”.  You will never know about the woman on the playground who said that I should “better police you” because you were having difficulty waiting your turn in line for the monkey bars.  You will never know because it’s me who takes every slap across the face, every punch to the gut, every stab to the soul.  I am your mother and I endure that pain so that you do not have to.  But God it hurts.  It hurts so badly.

And I know that I’m not supposed to give voice to these hideous feelings and thoughts.  At least that’s what society would tell you.  But they are my ‘truth’.  And if I don’t stick my fingers down my throat and purge all of this ugliness I’m afraid that it will breed and multiply and destroy me.  And I can’t allow that to happen because you need me – will most likely always need me.

I wish that I could pick you up and smother you in love and wrap you in self-acceptance and strength and courage and whisk you far away to a place where no one could ever hurt you.  But that is not reality.  The reality is that life will not always be easy for you.  And although there will be some walks that you will have to take alone, remember that when you have finished I will always be waiting for you with opened arms. 

Autism is a part of you and a part of me.  But it is all of you – body, spirit and soul – that is the very best part of my life!  Until the day that I draw my final breath I promise to raise awareness and understanding for your daily challenges, and fight for your acceptance and inclusion.  And while you will never read these words, know that putting them on paper was something that I had to do.

I love you.

Mommy