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!