Thursday, 1 September 2016

Parenting When Autism Is Your "Normal" and Neurotypical Is Not

It's a novel experience, having a child you don't have to constantly worry about.  A strange and marvelous realization, a little bit awe-filled in fact, that the things you do worry about are, quite simply put, extremely normal things.

They might fall down or off something, they might have a quarrel or a fight with another child, they might have a tantrum.  If they do, no harm done, they'll manage, they'll be ok.   When it comes to my neuro-typical son, the worry is barely there, showing me the sort of mother I might have been had I had two such children.

For example,I took my younger son, C, to a huge "picnic" in the city last Sunday.  Complete with blaring music, loud crowds, numerous bouncy castles, and a general atmosphere of friendly, boisterous chaos.  It was all a bit of an assault of my introvert soul but I managed because C was in heaven.  For four hours straight, he ran, shrieked with joy and excitement, tried everything there was to try, made friends of the other children, made enemies of the other children, ate four plates of food, and at the end of the day was sweaty and happily tired.   His refrain on the way home was "So fun Mommy!  So fun!"

And I smiled a slightly bewildered smile and thought "How very interesting!  He enjoyed himself!"

It was another novel experience for me.

I have tried this before with my older son, W, not understanding really why every time we went out to things I thought he would enjoy, we almost always both left in tears.  I would end up sweaty and exhausted from trying, trying so damn hard, to avoid a meltdown, to avoid stress, to avoid other playing children because something in me knew that in order to maintain a level of calm we have to avoid his peers for the most part.  I couldn't sit on the grass and relax, I had to follow one step behind, to make sure everything was always ok.  Because it could change in a second.  I knew this.  I just didn't really know why.

W could be excited at the thought of going somewhere and then we would arrive and reality would quickly set in.  I knew at any point, the screaming could start, and then there would be me, trying to hold his hands to keep him from lashing out, and always people, walking by and tutting their disapproval.  The unpredictability of this was emotionally exhausting.

Going out anywhere "fun" was difficult, anywhere with noise and color was unpredictable.  Almost without fail, it didn't go well. We had no car rides home with the refrain of it being "so fun" sounding in our ears.  Our car rides home from most things were filled with screams and the sound of a little head banging again and again into the back of the car seat.  We became "escape artists".  I can't say how many events and parties we had to leave quickly, my husband and I saying to one another "Let's go!  We have to get home fast!"  We would arrive home, W would run to his bed and spend hours there literally, his small body heaving with great gasping sobs until he fell asleep.  Sometimes he could hold it together in public but it was always the same when we came home, there was always a price, always a fall out.

Over the years I built up a sense of anxiety about this lack of control I felt.  But because it was my normal as a parent, it became for me, simply normal and for a long time, I accepted it as such.  We accept as normal what we are conditioned to accept as normal.

When W started pre-school at the age of 4, I would drop him off and then go home, sit on the couch, my stomach in knots, my heart pounding, feeling such a strong sense of impending doom.  Danger. Danger.  Go back.  Get him out!  Get him home!  Make sure he's safe.

I would watch the clock and rush to pick him up early.  I would often find him standing alone outside his body pressed against the fence, head banging into it or inside sitting rocking with his head banging against the wall.

"How was his day?", I would ask, forcing myself to sound cheerful but always with my heart in my throat.

"Not good.  He didn't answer any of our questions.  He would pretend the playground was an ocean with fish in it!  We told him it is not but he insisted and wouldn't stop saying it is!  He didn't get a star because he couldn't lie still and be quiet so he wasn't allowed to play with the toys he wanted to play with all day.  He hits other children.  He repeats himself all the time!  He always needs to know what will happen next!"  *exasperated sigh*

I couldn't bear it.  I would scoop him up and take him home and as I had since the moment I laid eyes on him, delight in his quirks, his funny behavior, all the things that made him so unique.

We would get home and first he would run to the bathroom and be sick from the stress of the day.  Every day without fail my four year old was sick when he came home.  Then we would put on quiet cartoon and he would lay on the couch recovering for the rest of the afternoon.

This was my normal.  I could only see that they couldn't see he was just beautiful.  Yes, different, even I acknowledged that, but so bright!  So engaging!  So imaginative!  The light of my life.

To me, different has never been equatable with wrong.  No one over the years ever suggested that maybe we should try to find out why W was different.  However many people told me in accusatory tones I had to "find out what was wrong with him".  Amazing how a word can make all the difference sometimes.  When I was told "there is something wrong with your son", my determination to protect him would increase and my defenses would go up.  I hated those words.  Something wrong.  Maybe if they had said "something different" it would have been easier to listen to them.

It was only when we adopted his brother C (C was 3 and W was 5 at that point) that I began to actually see how a neuro-typical child behaves.  I kept exclaiming in wonder and mild confusion over C.  "Look, he just...plays!" as though that were the unusual thing.

I still catch myself doing that, treating the typical behavior as though it were unusual.  Marveling in the evening to my husband as we sit and relax, "It's so strange, when I take C to preschool, he is actually just happy!  He runs in!  He greets people!  I don't understand it!"  Or "Funny how he can just play with another kid!  How interesting!  Do you see that?!"  I am puzzled and enthralled by the things most parents would find normal behavior.

C has his own challenges but they are so easily dealt with.  So very, very normal.

My perception of "normal" though remains somewhat distorted.  It's funny, the things that shape our understanding of what constitutes normal.

I think it's good though.  In my more confident moments, I think it's really good in fact.  My "normal" is a pretty fluid thing.  I have a mind that adapts easily when it comes to the needs of those I love and to challenges.  I will read every book, I will learn everything there is to know and become an expert. That's what I do.  I did it regarding adoption and I'll do it again now.

Because my normal as a parent is not yours and yours is not mine.  In fact my experience of parenting due to factors like adoption, other special needs, and now this, is quite different than some others. The thing is though, it's totally normal to me.

Monday, 29 August 2016

A Handful of Feathers

Sometimes I want to toss it all up at the sky above me,
(The sky that here is just never enough.)
Foolish things, like maybe... safety, for example.
See if it comes falling back to me.
But then I want to grab it back,
Hug it to my chest and run, feet pounding pavement, for dear life.
Pushing past dark shapes on street corners.
That I am not afraid of anymore.

I have to
Focus on putting one foot
Just there
One in front of the other...

Suddenly I'm not running,
I am balancing
On an old railway track
Weaving its way through the prairie grasses
And the sky is big
And wide
And it holds a lot of things I can't.

I slow, double over,
Tell myself
You can breathe here.

You can breathe here.
At last.

It's all just a handful of feathers tossed into the pale pink prairie sky anyway.

Wednesday, 17 August 2016

The Mug That Said "Embrace Change": The Aftermath of a Meltdown

I wipe down the counter.  After putting away the things that don't belong there, I stop and look.
What's left?  A grapefruit.  A folded blue cloth.  A fat mug with words "Embrace Change" written on it.

I feel a sudden irrational rush of resentment.

I feel, unfairly, that those words failed me, owed me something and let me down.

I am a happy embracer of change, I really am, I want to say out loud to someone.  My adult life has been spent adapting to all sorts of changes.  I am good at change, I think stubbornly.  I don't resist it, I roll with it.

This time though, my heart contracts and the words on the mug become blurry.  I think, rather unreasonably, Stupid mug!  What do you know about change?  I glare at it and its pretty flowers and calm color.

I step back.  One physical step only but much further away in my mind.

Until all things large and small become distant.

Time stops.

There has been another tornado.  My palms turned upwards in dismay.  It's left miles and miles of damage and debris.  Things got broken.  Time seemed to stand still.  For awhile we just existed in the eye of the storm.

A gentle question.  How was it?  Were you afraid?


 It was...unspeakable.  Inconceivable.  It seemed to come from nowhere.  The sky had been calm for a month. Nothing!  I had looked out my window, there were no small funnel clouds hovering menacingly over fields.  There was no darkening of the sky.  The wind didn't even pick up.  There were no alarms ringing in the air, telling us to run.  Get somewhere safe. To be somewhere safe.

I live where this sort of thing happens sometimes.  But even so, I forget pretty easily.  Second guess myself.  After awhile, when all evidence of the storm is gone, I go about my day, I smile to myself.  Maybe... it wasn't so bad, that last time.  It takes on the quality of a dream...of something not quite real...

But that's the weather for you.  That's life for you.  Isn't it?  

Later, there's a lot of discussion.  A lot of explaining the details.  A lot of words on paper.  A lot of change on the horizon.

In the aftermath, everything feels suspended.  Tender.

There is a little, still so little really, black haired boy skipping down the road ahead of me, a lopsided backpack half the size of his body, hanging off his shoulders.  Turning, peering at me over his shoulder.

"Mommy?  Do you still love me?"

"There's nothing you can do that would make me stop."

And silently I think "I've got this.  I've got you.  Don't worry.  We are going to take care of this somehow."

(I wrote this in April but didn't want to share it then.  Now we are well on our way to getting a diagnosis and I feel we have come a long way from this point.  Even just in my ability to deal with these things.)

Friday, 27 May 2016

Schoolyard Bullying

Bullying.  A word that has only gained in intensity and power despite its frequent use.  Everyone is outraged by bullying. It is the hot topic at parent meetings and "zero tolerance for bullying" has become every school's catch phrase.

And rightly so.  Consistent bullying is intolerable and can lead to horrific situations and leave lifelong wounds, especially on the heart of a small child, unequipped to make sense of a situation that would baffle most adults.  We have all read the stories, horror stories really,  of children and teenagers who take their own lives as a result of prolonged, systematic bullying.

We read these stories and try to convince ourselves that these things couldn't touch us on such a devastating level.  

We tell ourselves that a child who is bullied so badly that they take their own life must not receive the necessary love or attention at home to overcome the bullying by their peers.  A child who would take their own life must not have really been taught how great their worth was, how precious and irreplaceable they were.  However, if we are honest, we know that this is not always the case.  It's far more complex than that.  A child who is terrorized daily on the playground may have vulnerabilities in other areas already and may not have the capacity to cope with or process the trauma they are enduring.

Sometimes the most loving home in the world can't save a child who has been made to feel so utterly worthless.  

It is frightening to acknowledge that sometimes the most secure home isn't enough.

Bullying is intolerable.  

Schools should have a zero tolerance policy.  These words instill confidence, the idea that something is being done right, but is there substance behind these words?  

Sometimes a concern about bullying is met with something frighteningly similar to victim blaming.  "I am sorry but your child isn't like other children.  I'm sorry but your child doesn't read social situations very well.  I am sorry but..."

In essence, I'm sorry but somehow your child has brought this upon himself.

The bottom line is that these "I'm sorry but" comments are essentially contradictory to the idea of having a zero tolerance for bullying policy in the first place.  These comments in fact, contribute to bullying rather than lead to finding a solution.  The message given is that children could avoid being bullied if they would just conform to a standard notion of normal.  If they could manage to become just like everyone so as not to stand out in any way.

Is this what we want for our children?  It isn't what I want for mine.  The answer to bullying is not conformity or eliminating differences or the very things that make someone an individual.  As my children grow, I don't want to teach them to blend in and not stand out.  I want to teach them to stand up and be who they are and were created to be, even if who they are is a little bit quirky, a little bit different.  

We can try to teach ourselves and our children courage, empathy and hard things like how to stand up for someone who is being hurt or made fun of.  We can try to help them understand that a person is allowed to be different.  

It's important to keep teaching children that there are obvious differences we see at once.  For example, we may remember to teach our children that we don't bully a child who has a different skin color or who speaks with an accent.  We may remember to teach them not to make fun of someone who has uses a wheelchair or a child who has a visible disability.

It's also important to teach our children and perhaps ourselves, that there are less obvious differences as well.  Disabilities or syndromes we don't see or understand fully because a child seems "normal" on the surface.  The little boy who is bright and engaging but obsesses over one thing and repeats himself constantly.  The child who is sitting quietly in class and suddenly has a series of noticeable vocal or motor tics.  A child with sensory issues who has trouble processing the light, feel, noise, and speed of the world around them and experiences meltdowns or shutdowns.  All of these things may seem funny to classmates until someone sits down and explains to them what is actually happening to the child experiencing these things.  

That that child may just think a little differently and understand and experience the world a little differently.  Most importantly, that there is room in the world for everyone and it's ok to be a little different.  It's a pretty good lesson to take with us as we go through life.

Wednesday, 25 May 2016

Things I Would Like To Control

Tonight I am not looking to produce a brilliant piece of writing.
I am just looking to control the things I can control.
It's been the worst.
The most overwhelming.
I feel like between this and that, I can't quite reach the surface to draw breath.
I find myself wanting to scream at innocent people saying normal things
The words I always so smugly deemed as arrogant:
You don't understand.
But of course, I bite my tongue.
I had this urge tonight to smash my fist into a wall in frustration.
Or to see it fly through glass.
I, the peace loving, non confrontational, smiling optimist.
But of course, I kept my fists to myself.

Because I have to be emotionally stable now.
I don't get the luxury of hurling raw emotions all over the place
And leaving others to wade through the debris.

I am just looking to control the things I can control.
It's how I know when I am overwhelmed.

I struggle with a sweeping desire for clarity,
And when I can't find it.
I feel the panic burning in my throat and I want it gone.
Everything.  Every excess thing.
I want it all gone from my sight, gone from my home.

I keep hoping that in one of these purging binges, I find it.
That I will raise my eyebrows, give a rueful laugh,
Oh there it is!  Clarity was just hiding in the back of my overstuffed closet!

Material things, they make it so I can't breathe.

As soon as life starts spiraling, I start trying to breathe by throwing clothing into bags to give to a friend, by piling books on the floor to give to the library, by tossing papers and pictures into the garbage.  I open up my cupboards and slam them shut again, take a deep breath, overwhelmed by the excess...

Each thing that leaves the house gives me a rush of vivid relief.
A heady injection of the illusion of control.

The truth of it is this:
Material things are things I can control.

Things I can't control:
I can't stop someone from hurting,  Not even someone who is my world, my heart.

Walking home from dropping my son off at school in the morning, my stomach in knots, my heart pounding heartbreak, there's so much I can't control.

I can't keep him safe.  I can't protect him from the laughter, and fists, and words.

I can't keep his shining exuberance intact.  I can't wrap my arms around him and keep him from being hurt.

And this is when it hits me, the helplessness I feel.  I wish there was a contract I could have signed.
Between God and I when I became a parent.

It would have asked me to confirm please,
Am I willing to take all the pain, all the needless suffering this child might experience, on myself,
Let him get through life whole, unscathed?
Sign and date below.

I would have done it.  I would have said, yes anything.  Just let him keep his smile.

If that were a thing I could control.

Monday, 11 April 2016

Blogging: Succeeding At The Things That Don't Matter

“Our greatest fear should not be of failure but of succeeding at things in life that don't matter.”  - Francis Chan

I first started blogging in 2007 when my husband and I first decided to adopt.  I began a blog called "Carpe Diem, Gorgeous!" and simply wrote. That was really all I did with the blog.  I didn't worry much about stats aside from thinking it was great fun to see the various countries those who visited it came from.  I didn't spend time on blog promotion groups, I don't even think they existed then.  I may have occasionally shared a post to my personal Facebook page but rarely.  Getting things shared on social media wasn't yet a "thing".  I never heard someone mention "going viral" or having that as a goal.  I never heard of blogging goals at all.  I never thought about my blog "making it big".  In fact, the main reason I stopped blogging at Carpe Diem was because I felt I had too many readers (in reality, not a huge amount!) and I didn't want it to become more about the readers than about the actual writing.  This isn't vanity speaking, this stems from the fact that although I love writing and publish many personal things, I also have a deep, contradictory need for privacy.  

Looking back, I think that we had more fun blogging then.  Blogging was more relaxed.  Many wrote simply for the pleasure of writing.  This can be argued of course since it is only a personal opinion but it's how it felt.  We all connected then through browsing and truly enjoying other's blogs, commenting and building strong relationships.  After a couple years of blogging, I had a good readership and a strong, close group of people that I interacted with (and interact with still in may cases) and many of those people became friends.  

I took a break from blogging (not writing) for several years and came back to discover blogging is business now.  Blogging is serious and competitive.  Blogging is less than ever about personal interaction and more about numbers of followers on social media.  Much (not all) content has become quite bland or on the contrary, purposely controversial.  Less about actual writing and more about succeeding at blogging itself.  I find that I have trouble making myself care about all these things blogging is now supposed to be.  I just want an emotional and creative outlet.

I care about writing and authenticity.  I care about reading what other people are genuinely concerned about or what touches their hearts.  I care about beautiful, interesting, clever, creative writing.  I care about the people behind the words.  I care about interaction and sharing.  I care about reaching people.

I like to write serious things and I like to have fun with writing.  I like a little, unprofessional, non- trendy blog.

The articles I send out into the world for publication are one thing.  I write them because I want people to share and read them.  What I write here is different. Sometimes I want to write things here that are more private, that I don't want to be shared many times or seen by many people. Things that are just for me.  

In the end, people may like or dislike what I write but I am the one who knows whether I am satisfied with what I have written.  That knowledge has to come from inside myself.  

Writers need to have a combination of assurance and uncertainty to maintain authenticity and vulnerability.  Blogging is one thing.  Writing another.  And sometimes, people manage to combine the two.        

Happy writing!  I'm still having fun!:)

Monday, 14 March 2016

Now You've Got To Be Strong

Now you've got to draw close.
Wrap your arms around your body, use you hands to
Protect your heart.
Create some sort of barrier.
Do the hard things you aren't sure you can do.

Now you've got be strong.
Not give anything away.
Hold your hand across your mouth
And not give fear a voice.

Now you're going to become familiar with a new sort of chaos.
With things that will hurt and damage.
Familiar with watching someone you love more than yourself fall apart.
Familiar with distance and not being able to reach them sometimes.

Now your heart will break
And you will cry a million private tears,
Into towels in the bathroom
While you do your makeup.
Into pillows.
Into your hands.
At any time of day.
And maybe no one believes you.
Or maybe they think it's your fault.
You haven't done enough.
You have done too much,
In any case, you can never win.
There will always be those who see the ways you have failed with this.

But now you have to focus.
On moments.  The small singular softer moments.
On loving and loving and reassuring that you love,

Now you must become the safest harbor there is.
The very safest place you could ever imagine
For someone who is hurting in ways you don't understand.
Now you have to open your arms
And make room for all this sorrow.
You slowly kneel on the floor and collect shattered pieces of everything broken.
Lego. Glass. Hearts.
All in disarray.
Now you have to try
To put everything back together,

Now you've got to be stronger than you expected you'd need to be.
And you can be.
You can be
Both warrior and peacemaker
Both a storm and a safe place
For the ones you love.