Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Tuesday, July 30, 2013

Irony never gives you an answer.

Life is full of irony.

Joy...then pain.
Hopelessness...then answers.
Fear...then calm.
Love...then, well all of the above.

The other day after I dropped Kannon off at summer camp, which let me start off by saying was completely my idea for him to go.
My "idea" because it was an opportunity for Kannon to be around typical peers. To socialize with them and learn from their example. To hopefully place him slightly out of his comfort zone and push that Autism bubble enough so that it would touch his head and heart, yet not hard enough that it would burst...

As a mother to a child of Autism these decisions are always crap shoots at best.
We roll the dice with our hearts, and sometimes our heads...but we always say a prayer, take a big breath in and roll the dice.
We always have to let go.
Hoping that our gambles will pay off, for the best of our children.
Every time betting against the odds that maybe this time it will maybe make this Autism thing a little bit better...even if for a day.

Anyways, like I was saying I dropped Kannon off at camp the other day while they were outside having their playtime.
I did this on purpose because I wanted to observe for a bit...I wanted to know why Kannon did not want to go to camp, why every morning he dreaded the drive to go there.
I wanted to know if my crap shoot was paying off in any way.

I watched as Kannon walked from one group of kids to the next, to the next, to the next...

He would walk over, say something and move around smiling trying to engage at least someone from the group. Yet every time he was ignored or looked at for a second then they would go back to their group without any efforts to include him.
He did this for 19 minutes, yes I timed it...then he just walked off into the grass field by himself and sat down.
He sat alone for a few minutes just watching the other kids.
Then he started feeling the grass with his fingertips...grazing the palms of his hands over the tops of the blades over and over again.
He started singing to himself and raised his face up to the sky, closed his eyes and just sang...

I stood there and just watched.
I shook my head at first and wanted more than anything to just take him home...take him back to his world where he was happy and not alone.
But he just sat there soaking it all in.
The sun, the grass, his song...and he was smiling.

One of the hardest things about being Kannon's mother is not knowing what he really understands.
What he really takes in or lets into his heart.
I never really know what hurts him, how he feels about things, and if he understands the emotions attached to what his gut is feeling...

Some may think I am a dreamer myself...too emotionally driven.
Maybe it is my way of "dealing" with the hand I have been given with Kannon.
With all the hurdles we have to go over together every single day.
No matter how small they may be, there are every day hurdles to go over.
Hell most days I feel as if Kannon is the one gracefully leaping over them while I am hurling myself over with the grace of an elephant. ( no offense to elephants... )

Maybe Kannon is just getting some sort of sensory input by touching the grass, soaking in the sun, singing to the heavens...
Maybe he is just stimming. (Stimming is almost always a symptom of autism, but it's important to note that stimming is also a part of most people's behavior patterns. If you've ever tapped your pencil, bitten your nails, twirled your hair, or paced, you've engaged in stimming.)

Well to be honest with myself and whoever reads this, I have to think it is more than that...more than Autism.
I have to believe that in his own way he is "rolling the dice" and doing what makes his heart happy.
Doing what he thinks is best for him at that very moment...and not just some stupid brain itch that needs to be tended to in order to calm his nervous system.

So, after standing there watching Kannon for about 35 minutes I walked away.
I walked to my car, got in, put my face in my hands and just cried...here was my first hurdle of the day.
I don't care how many times I see him getting rejected by peers, it never gets any easier. It never gets easier to watch him play by himself more times than not, even if I understand why it is happening.  No mother likes to see that.

He never had any social interactions, no peer modeling to learn from...not one interaction with another child.
He sat in a field, played with the grass and sang songs to himself while swaying back and forth to his own rhythm of happiness.
More notable though, he was smiling most of the time. Smiling and singing.
This was Kannon's hurdle...now you see how the elephant metaphor applies to myself in contrast to him.
Me in my car crying, he in a field of green grass singing.

Tomorrow, next week, next month I will have to continue to "roll the dice" in hopes of helping him.
Ironic, since he seems to be the one helping me in my life situations.

Days like this do not make it easy.
Some answers/clarification would be great, says every mother of an Autistic child...
Enough said.


Thursday, July 11, 2013

A swift kick to the...

Some days I just want to kick Autism in the balls.
Excuse the classy choice of words, but it's true.

Whenever I walk into a room filled with kids playing, laughing, sitting in groups socializing and there in the back I see Kannon sitting by himself at a table with paper drawing his fairy tale creations...

Whenever I drop him off at school, or take him to a playground and watch him walk up to his peers and within a few seconds they walk away. Then watch Kannon walk off and play by himself still smiling...

When I see how beautiful of a soul Kannon came into this world with.

When I watch him cry in frustration because he can't get his point or emotion(s) across.

While every morning I bathe/shower him, brush his teeth and help him get dressed, then looks at me and says "thank you mamma".

When I watch him watch other kids playing with a sparkle in his eyes.

When he was pushed off the top of a playground after trying to play with other kids.

When he happily waved goodbye to a boy who dumped sand on his head and called him "retarded"...then thanked the boy for playing with him.

After sitting up at nights thinking about what will happen to him when I leave. Who will take care of him. Who will love him. Who will he have to love...

Autism is overwhelming.

At times I ignore it, other times I look it dead on and fight.

I believe in making the best of what you are given, no matter the pain it causes.
We are all much stronger than we may know, or want to know...and sometimes you are tested more than you ever wanted to be in life.

There are times in life you have to let go of pain.
You have to move on for the best of your heart.

You have to forgive, but you don't have to forget.

I know my decisions in my life up to today have all been perfect for me.
They may seem selfish, or stupid or even strong.
It doesn't matter how they are perceived.
What matters is that I am doing the right thing for my soul...for my future.

What matters is that I have a son with Autism.
I also have a daughter that is trying to find her way in our family with all she has had to deal with at such a young age...she is doing beautifully.
I have myself who has been broken, built up again and tries every day to find the simple beauties in life.
I have a small support system of family and friends who are everything to me and I make sure they know that.

Big picture, Autism has defined a lot of who I am today...but it has not consumed me. It has never forced me to do anything or made me make bad choices because of the trials it has put met through.
I know who I am, I know who I do not want to be.

I also know who Kannon is.
I hear his heart every single day...as silly as this may sound it is so true when you have a child who cannot properly communicate. You hear them speak in other ways.
I also know who he wants to be, but can't...because of Autism.
I know he looks at himself every day with frustration yet he finds his way into peace.
He has made peace with having Autism, which in turn has made my world that much.....more, no other word came to mind but more.

To be at peace with yourself is a powerful notion...or action.
I find myself questioning actions, words, thoughts all the time.
Overall I am at peace with the big picture, with the person I am today.
I have Kannon to thank for that.

I had someone tell me today that they have been working with kids for the past 5 years almost every day and that Kannon was the sweetest, happiest person they had ever met.

What else would any mother ever want to hear...
I have a happy soul living on this earth.
He has found peace with it all, and better yet he is happy.

So to that testament and to all I stated above...

If I ever meet Autism face to face I will kick it in the balls.

Assuming it has any.