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

Sometimes Autism Makes My Heart Hurt

Every mommy needs to laugh, even when there’s nothing to laugh about!  And even when a mommy needs to cry, she can always find the strength and courage to carry on.  That is this mommy’s motto and I believe every one of those words with a deeper and stronger conviction each time I type them.  Certain mommee-truths make me laugh out loud, even when I have to reach deep to find the funny.  There are those mommee-truths, however, that claw at my heart strings and bring me to tears. 

The other day I watched my daughter play on the monkey bars after school with her peers.  Inevitably there was an incident.  I say ‘inevitably’ because no matter how hard I will my daughter’s autism to not interfere in her social interactions with others, it almost always does.  I listened anxiously as one crying child recounted how my daughter, who was sitting atop the monkey bars, had placed her hand over this child’s as she had tried to swing through, preventing her from moving.  Seconds later a tap on my shoulder alerted me to another crying child who was recounting the same information to her mother.  In that moment my heart was aching – breaking in fact.  The ‘truth’ is that sometimes autism makes my heart hurt.   

I have said it before and I will say again that my daughter is beautiful in the way that matters most – on the inside.  She is kind and compassionate with an infectious smile that lights up a room.  Her feelings for her younger brother aside, there is not a mean bone in her body and wanting to intentionally hurt another child would never occur to her.  And yet autism is always there; always her underlying current and interfering in her social interactions. My child has spent countless hours in countless therapy groups being taught what is socially acceptable and unacceptable and learning how to play – concepts that are inherent and come naturally for neuro-typical children.  But the autism is ever-present. And so her impulse-control guides her, preventing her from recalling what the socially appropriate thing to do in a specific situation is.  So she covers the hand of a child trying to cross the monkey bars and prevents them from swinging through.  And what can I do but watch the scene unfold, saddened in the realization that this is my child’s life; a life that I would never have chosen for her. 

Not too long ago I read a passage from the book 1001 Great Ideas for Teaching & Raising Children with Autism or Asperger’s by Ellen Notbohm and Veronica Zysk so profound that it completely changed the way I view my daughter’s behaviours.  The authors said simply “Don’t ask why”.  They said that in most instances a child with autism does not understand why they do the things they do.  The behaviours may stem from sensory issues (i.e. it feels good to her) or there may be something about the situation that is reinforcing the behaviour.  The pressure that the child feels to respond to the ‘why did you or didn’t you’ questions can cause them to make excuses or blame others.  I know this.  I KNOW THIS and yet I still stood there on the playground and asked my daughter why she would prevent the other children from swinging across the bars.  She couldn’t tell me why.  Of course she couldn’t!  And so inevitably she became angry, she started to cry, and she started verbalizing random thoughts completely out of context.  On the walk home I reflected on how badly I had handled the situation and what a disservice I had done to my daughter whose daily struggles I cannot even begin to comprehend.  Although still not the right approach, I asked her what had fueled her actions.  “My mind told me to do it,” she said.  And so it is that sometimes autism makes my heart hurt.

This is but one of many incidents (although minor) that my daughter, and our family, has had to weather due to special needs.  Does she enjoy it?  Does our family enjoy it?  The truth is NO.  But I would walk through fire for my child and I will always be there to guide and help her, to raise awareness and understanding for the daily challenges that she faces and to advocate for her acceptance and inclusion.

Later that evening after my daughter had long forgotten about the day’s events, she asked if she could play at the park across the street from our home.  Long after all of the other children had left the park and the street lights had come on, I watched my daughter swing peacefully back and forth across the monkey bars.  They are her "thing" and it is in this place that she is strong and takes comfort. 

So yes, sometimes autism makes my heart hurt.  More times than not, however, there is no room for hurt.  There is no room at all because my heart is filled with pride for, and bursting at the seams with love for, a beautiful little girl who calls me mom!

Find Out What Makes a Courteous Pooper

There are a very few things that happen behind closed doors in this mommy’s home.  Sadly using the washroom is not one of them.  Even before kids my husband and I were prone to leaving the washroom door ajar.  It was never an issue, however.  We were respectful of each other’s privacy and knew when to stay away.

Then along came children.  Although the number of persons within our home changed, sadly my husband and I’s habits did not.  Even when in use the washroom door continued to remain ajar.  As all parents can attest to, little eyes and little ears see and hear everything no matter how cautious or discreet you try to be. 

That being said, the kids soon realized that when dad took a poop it stunk.  And when dad pooped he let it sit in the toilet until the stench permeated the air around him and wafted out into and down the hall.  The kids also realized that this habit of dad’s drove mommy crazy.  And although mommy nicely asked him to flush the toilet, daddy’s answer was always NO.  NO because he didn’t like that the water splashed up and sprayed his bum.

When the kids started copying me and telling daddy to flush, I admit that I found it amusing.  The day my son started mimicking my washroom behavior, however, I admit that I was a little taken aback.

“My tummy hurts,” my son said one day.

There’s usually two things that cause that to happen and so I asked him if he needed to either a) fart or b) poop.

“No,” he replied to both options.

There wasn’t much else I could do.  So I suggested that if his tummy was still hurting perhaps he should lay down and rest.  Shortly, thereafter, I noticed that my son had left the couch and gone to the washroom.

Out the open door I heard him call, “Mom I know why my tummy hurt.  I had to poop and then I had to fart.” 

Wonderful news!  I was hopeful that all of that lower-body activity would soon alleviate his pains.

“And mom,” my son shouted again, “I’m following what you do.  I poop then I flush the toilet and then I try and poop again.”

Well you could have picked the mommy up off of the floor!  Why I was surprised that he was aware of my washroom habits I’m not sure.  But in the end it really didn’t matter, as he had just provided me with the laugh that I desperately needed.  And the truth be told, my son’s future roommates, co-workers, partners, spouses etc. will always have his mommy to thank for why he’s such a courteous pooper.

Happy flushing!

How my Son Sees His Father

It was one of those rare mornings where the kids were enjoying each other’s company and wanting to play together.  I was downstairs making breakfast, thoroughly enjoying listening to their chatter and laughter. 

I was on my way back upstairs when my son called down, “Mom, B’s name is now Olivia.  Her parents died and she’s come to live with our family.  And I’m Ben Bishop.”

My daughter rarely engaged in imaginary play, so while the part about “Olivia’s” parents dying was a bit morbid for my liking I didn’t say a thing.  And, I thought, it was no surprise that my son had chosen to be one of his favorite NHL goalies.  It was all good!

“What’s your name going to be?” my son asked as I entered his room.

Personally I liked the sound of ‘mom’ but apparently the kids did not.  “Jen,” I said spontaneously.  Everyone liked a ‘Jen’, right?

The kids got up and continued to move through their morning routine.  I checked on them again once they were in the washroom brushing their teeth.

“So remember,” my son reiterated, “she’s Olivia.” And he pointed to my daughter.  “I’m Ben Bishop, you’re Jen and dad is God.”      

What?!  Did he just say that dad was God?!  I – mom – do everything for everyone within our home and he called his father (who was not even present) God!  Unbelievable!  But as I always say, as parents we always have a choice as to how we respond to the things our children say and do.  And we always have a choice as to what ‘truth’ we glean from their words and actions.  So this mommy chose to remain silent and smiled inwardly. 

The ‘truth’ was that my son had put his father on a pedestal.  He looked up to him and worshiped him.  He believed that the sun rose and set with his daddy.  My son asked where his father was as soon as he opened his eyes in the morning, and the last face he saw at night before falling asleep was usually his.  They enjoyed a father-son bond that I prayed would never be broken.  So if in my son’s imaginary world he chose to call his dad ‘God’ that was okay by me as I knew he wouldn't always feel that way.  

Another ‘truth’, however, was that a man’s ego only needed so much stroking!  So up until now that story was known to only three persons.  And I've decided it's okay that daddy continue to believe he’s God (but only in the bedroom), so long as he remembers that this mommy will always be the Queen Bee!    

Mischieviously Obtained Video

Were it not for sheer necessity my darling children would never have accompanied me to a recent physio therapy appointment.  But the kids were out of school, my husband was working and all of my reliable babysitters were busy being teenagers.  I simply had no choice.

Like any good mother would I devised a plan; a well thought-out attempt at making the outing as painless as possible.  I knew that three things needed to happen before anyone left the house:  1. the kids needed to eat 2. the kids needed to use the washroom and 3. two iPads needed to be fully charged and ready to go.  More importantly, though, I needed the kids to be clear on my expectations of their behavior.

Once we were packed into the truck and on our way, I reiterated how important this appointment was.  I told the kids that I would find a place for them to sit; a place where they could watch me and play on their iPads. I also stressed that they needed to be quiet and respectful of the other clients who would also be there receiving treatments.  It really was the best-laid plan.

Upon arrival at our destination I located my treatment coordinator who said that the kids were more than welcomed to hang out while I worked through my exercises.  So I set the kids up on a workout bench in plain view of me, handed them their electronic devices and stated my expectations AGAIN.  And then I headed for the treadmill.

I only had to put in 10 minutes.  Every 30 seconds, though, I found myself turning around to check that the kids were alright.  And two minutes was all it took for the kids to start ...

“Mom, we’re thirsty.”

“No you’re not,” I said calmly over one shoulder, “you had plenty to drink at home before we left.  If you’re still thirsty your water bottle is beside you.”

“Mom, we’re hungry.”

“No you’re not,” I said, this time in more of a sing-song voice, “you just ate at home before we left.  If you’re still hungry there’s snacks in the bag beside you.”

“Mom, we’re bored.”

Good Lord!  Was this really happening?  And in front of a room full of strangers?  Of course it was!

 

“You’re not bored,” I managed through clenched teeth, “you have your iPads.”

I felt it in my bones – this would be the longest one hour physio session ever! I managed to finish my time on the treadmill and then it was over to the weights.  And just like that it seemed as though the kids had settled in.  When I next turned around to check on them my daughter was holding up her iPad smiling at me and my son’s attention was focused on the man with the prosthetic leg.

I was crouched down adjusting the weights when from behind me I heard someone say, “Excuse me, but your daughter …”

I stood up and looked into the eyes of a woman I knew only as ‘Donna’.  I’d seen her around a few times.  Having heard her speak to others I knew that she was a professional wrestler of sorts.  Her ring name was ‘Donna-Do-You-Wanna?’  Her neatly braided rat’s tail hung mid-way down her back, her body was adorned with tattoos and piercings, and when she smiled I saw teeth the color of my first morning pee.

What could Donna possibly have to say to me about my daughter?  Was she going to say how pretty she was, or that she looked just like me – comments we had heard repeatedly since we’d entered the facility?  No.  Instead what she said was, “Excuse me, but your daughter is videotaping me with her iPad while I’m exercising and it’s really creeping me out.”

Okay – not what I had expected.  It quickly dawned on me, though, that when my daughter had been holding up her iPad and smiling it had not been because of me.  Instead it had been because she was filming!

“Oh that,” I responded casually, “she does that all of the time for her dad.  She’s only supposed to tape the attractive ones, though.  Obviously she made a mistake.  We’ll be sure and delete that immediately.”

Now, do you believe that that is what this mommy really said?  Well, I did not!  Although later that evening when I recounted the incident to my husband, that’s what he said I should have said!

The wisdom that comes with age, and hours of therapy, had taught me that how I responded to my child’s actions was far more important than how I responded to Donna’s reaction and words.  Once-upon-a-time this mommy would have responded out of anger and embarrassment.  I would have fallen over myself to apologize to this stranger and undoubtedly reprimanded my child harshly in a very public forum.  But to what end?  To appease someone who was a stranger to me and in so doing crush my child’s spirit?

“I’m sorry my child’s actions upset you,” was all I said.  “Although her intent was harmless we’ll delete that video immediately.”

On the ride home later that morning I addressed the inappropriateness of using our iPads to tape people we do not know.  And although I would never have given voice to my thoughts, the idea did cross this mommy’s mind that there were far worse ways a girl could make a living than selling mischievously obtained video!

Just sayin’ …

Traveling Troubles

For this mommy travelling with her two young children in a vehicle over any sort of distance ranks right up there with teeth extractions and pap smears.  It is both unwelcomed and uncomfortable!  Short of having strapped the kids to the roof, I have done everything within my power to make a long drive as pain-free as possible for all parties involved.  

Both iPads are fully charged and strategically placed within the vehicle to ensure easy access at all times.  Snacks and drinks are prepared and packed, as are coloring books and crayons, books for reading, playing cards and action figures.  Neck pillows, blankets and stuffies await each child on their seat should they desire comfort and warmth.  Child-friendly music is piped through the rear speakers and, on more than one occasion, this mommy has extended an arm out behind her to hold the hand of a child in the backseat who would not have stopped crying otherwise.  I have done it all and still it is never enough!  And it is never very long into any of our journeys before the murmurings from the backseat begin to make their way up to the front.

“Are we still in Canada?  Do we have to go on the highway?  I don’t like to go on the highway?  How long until we get there?  How many cut-offs until we get there?  I’m hungry.  I’m thirsty.   I don’t like what you packed for a snack.  I have to pee.  No, make that poop – I have to poop.  I’m bored.  Why can’t I get YouTube in the truck?  I’m hot.  I’m cold.  I don’t want to go to sleep.  She undid my seatbelt!  He pinched me!  Are we still in Canada?”

So this mommy has taken to singing!  When it all just gets to be too much – when I’m ready to open the door and throw myself into traffic – I sing.  My husband - a self-proclaimed horrendous singer who swore he would never sing to, or in front of, his kids – accompanies.  Usually I let loose with a series of operatic ‘AHHHHHHHHHs’, which is my way of summoning a higher power to help keep me from losing my mind.  Other times I belt out my best version of The Wheels on the Bus.  That “baby music” drives the kids b-a-n-a-n-a-s.  On occasion the kids and I would agree on a song to sing together; a song that made the miles pass by more quickly and more pleasantly.

My family was recently on our way home from cottage-country.  On a good day that trek took a minimum of four hours.  As anticipated we were not far into the drive when the murmurings from the backseat began to make their way up to the front.  It was time to sing!  Within no time the kids and I had decided on Down by the Bay.  We all agreed it was a catchy little tune, had a good beat and was easy to dance to.  Not only was Raffi’s song a good-kid-memory for me, it had an educational component; aiding my four-year-old son to learn rhyming sounds and words.  Moving in a clockwise direction around the vehicle, it was my turn to rhyme the first verse. 

“Down by the bay where the watermelons grow,” … and as the kids’ voices faded into the background I finished with my favorite “have you ever seen a bear combing his hair?”

Next up was my daughter.  In between giggles she finished her verse with “have you ever seen a goose kissing a moose?”  No surprise there.  Everything with her as-of-late revolved around kissing.

And then it was my son’s turn.  Born full of pee and vinegar, I knew that he would throw down a rhyme as unique as himself.  “Have you ever seen nuts on butts?” he belted out at the top of his lungs.  “Down by the bay.”

I don’t know if it was the heat.  Perhaps it was having lived and breathed my children for the past 24-7.  Or maybe I just needed to get out more!  Whatever it was, it made me laugh.  And the more I laughed so did everyone else.  Nuts on butts – I thought that was hysterical!

When everyone but me had stopped laughing my son asked, “What?  Nuts to butts.  It rhymes, doesn’t it?”

I was quick to answer, wanting to assure him that I was not laughing at him.  “Yes my son, it rhymes.”

Well, what more can this mommy say except that she will neither confirm nor deny that she has ever seen, heard, or felt nuts on her butt!  But as I always say, truth is funnier than fiction so you can never be too sure … Down by the Bay!