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

Saturday, June 7, 2014

Let's Not take ourselves seriously. Seriously.

What the future holds is obviously complete speculation.
I will stand up and say that I hope for great things, great hurdles overcome and I hope overall to be surprised.
I find myself on a day to day basis being surprised by Kannon and his advances in life. He clearly is fighting a bigger battle than I could ever create or imagine in my clouded mind.  He is a true warrior of a class beyond my creation.
His clarity and fight for being better is sometimes overwhelming. I find myself at times ignoring his speedy human advances in life...why? I have no clue. Maybe because having a kid with Autism is a minute to minute experience. Sometimes moments need to be reflected on at at later time....If I can catch up with his life intentions.

I was watching the movie "There's Something About Mary" tonight and I found myself laughing out loud at the character Warren. I have seen this movie at least 5 times before and always knew deep down that Warren's character has Autism without them coming out and saying it. The physical ticks, the repetitive behavior, etc...it's Autism.
Anyways, not until tonight for whatever reason was I able to laugh out loud at his character. Even in the quiet of my own home...the mother of an Autistic child, I still couldn't let go and just laugh.
Well to be honest, Autism just isn't funny. Especially if you've lived with it for as long as I have.
BUT, to be able to find the humor in the honesty of it was what got to me tonight. For whatever reason I could laugh at the beautiful, pure, honesty of what it looks like from the outside.
Clearly I know what goes on behind closed doors. The therapy, the words of wisdom/hurt, the daily grind of Autism...It's just not that funny on most days.
But the overall beauty in being able to find pureness in my son's condition through a silly movie was wonderful. After all, the one thing in life I find the most healing is laughter. It is just my thing.

Autism isn't funny...I mean come on. Those of you who live it everyday know this to your core.
But the raw beauty and literal undertones can be. The black and white of it. The no Bullshit thing.

I am just glad I still had it in me to find that and to be in the moment without hesitation or guilt.

Clearly I am still growing, and growing WITH Autism.

Yeah for me :)


Tuesday, April 1, 2014

The puzzle with missing pieces...

Kannon never ceases to amaze my mind with his words of insight.
As ironic as this is, since most of you know he has a great deficit in the language department.

With tomorrow being Autism Awareness day I had to share this story.
I share it in hopes it will bring a smile to your heart, a glimpse into Kannon's life, and a greater compassion to those living with Autism.

Kannon loves puzzles. He always has. I remember one of the first times he saw one out of it's box all spread out on our table…his eyes scavenging as his mind was racing to put it all together.
It was great to watch it all unfold.
Being that the chosen symbol so to speak for Autism is a puzzle piece, I thought this story was perfect to share for Autism Awareness.

The other day Kannon was in his room and for whatever reason on this day he decided to work on a puzzle he had got as a gift last year for his birthday.
It's a 500 piece puzzle, so pretty decent size for a little dude…
He had a few pieces put together here and there and I left him to his project.
I came back to check in about 30 minutes later and he had about half the puzzle done. There were pieces missing within bigger parts of the puzzle and he was sitting there with one piece in his hand leaning back against the wall staring up at the ceiling.

"Kannon are you alright buddy…you taking a break from the puzzle?"

"Mommy, it will all go together…it will all fit together…I just need a break…head hurts"

He sat there for another 5 minutes or so just dazed. Sitting with this piece on his hand his head against the wall and not a care in the world.
Finally he sat up, looked at the puzzle got up and put the piece he had in his hand aside next to his books.

"Mommy, this one is special…this needs time…"

"Time? Do you want me to help you?"

"No. I don't need help. It will all fit later…in time"

Then off he went into the living room, poured himself a glass of water, put his feet up and watched tv.

I checked on that puzzle piece over the next few days. It sat in the same place for 3 days. Puzzle untouched but still laid out on the table.
On the 4th day he went back to it. He sat down looked at the puzzle for a bit, got up and got the puzzle piece and without flinching put it with another lone piece on the table.

"See mommy it's fine…it's o.k."

He got up and left the puzzle again, seeming satisfied with his one piece fitting for that day.

I believe overall he left the puzzle out for about a week and would go back to it here and there.
He finished about 75% of it, then one day just put it all back in the box and cleaned up the table.

I asked him why he didn't finish the puzzle…
He said this,

"It didn't need finished…it needed time…don't worry momma it will put itself together."


The amount of metaphors in that last sentence alone are astounding.
Coming from a boy who had to learn every single skill he has today through hundreds of hours of therapy, endless days, weeks of struggles for his own words to come out to express his simplest of needs…and that comes out.

It will all put itself together, and that is the bigger picture here.
My life so far has thrown me out of any mainstream thought, action, or routine that only those who live with Autism can understand. It isolates you, turns you inside out and exposes the ugliest, rawest of truths. Most of these truths take time to accept, if at all.
I know I have made many mistakes along my journey, but I also know the hurdles I have overcome because of my love for my son. The love that gets you through the times that if you had to watch someone else go through would make you cringe, cry and maybe even look away out of fear.

I want to personally express my respect, love, and support to all families who live daily with Autism.
Who have gone through the heartbreak of grasping for your child daily when they are right there in front of you…when at the end of the day all your heart would need to hear is "I love you" yet you know you aren't going to hear it.
It really is all about these kids who have to live with this disorder every minute of every day…but it is the parents love, strength, and bravery that I want to shine a light on.
Without you, without us fighting for our kids there will never be a good day for them.
Without our ability to wake up every morning knowing what the day is going to bring and being able to take a deep breathe, put on your bravest face and get up to stand next to your child, no one else will.
The constant worry, pain and ache of all the unknowns…the financial burden and stresses...
It all takes a toll on the soul, on relationships of all kinds, on your overall health.

What I am trying to say is that we all have a puzzle to put together…our life.
Our life essentially is just one big puzzle. Piece by piece we put it together, some pieces fit easily and make sense to your mind and senses right away…while others may take longer to fit. Yin to the Yang.
That is how I have to approach my life at times. If something doesn't fit or feel right, I hold onto it for awhile and come back to it…think on it. Sometimes I put it down, walk away from it and eventually I will have to come back to it for my sanity and for my overall puzzle to go together.
Most times we won't see the bigger picture yet, of why all these pieces go together. The important thing to remember is that they are coming together for a bigger purpose…and in it's own beautiful time it will come together.

Just as I said earlier I want to shine a light on those who live daily with Autism, who have pieces of their puzzles in their hands every day and grasp onto them for dear life sometimes forcing them to fit out of frustration and love…and I want them to know that's o.k. We all do it. We all want more than anything for our lives to come together in some beautiful mosaic or puzzle, piecing it together in our own way and time.
But that's the bitch of Autism.
It doesn't really give you that control or option sometimes.

So to those parents who surrender their pieces to the greater fight, to the beings unknown…I honor your love and strength.
It is truly a gift to sometimes not have all the pieces fit, and to just hold onto them a little longer than you may like or feel comfortable doing.
That is the gift.

I hope this brings awareness to anyone who chooses to open their minds and hearts to families living with Autism.
They are building some truly beautiful puzzles that deserve time.


Sunday, February 2, 2014

The power of paper.

Kannon had a victory in the past few months.
He underwent his series of tri-annual testing through the school district and last week we sat down with his Educational team and discussed the results.

I want to first address the power, or supposed power of a piece of paper…and what is written on that paper.
Whether it be a study, results of test, a letter, a bill, etc…it is all just words.
No matter what people may think are behind those concrete words, they are just that.
Just as I write, people can dismiss what they read immediately without any thought and move on.
Or they can take what they read to heart and believe what they read is truth.

It is tough to see your child "on paper".
His supposed intelligence, his years of hard work in black and white.
I have found through my personal experience with "papers" that at the end of the day it doesn't mean a damn thing.
It doesn't give an accurate assessment of either parties involved and it never really says what it is trying to.
There is always more.

Kannon is so much more than what those papers said of him.
He is much more beautiful, intelligent, focused, and present.
He is not what they perceived him to be, no matter what tests were given.

I used to put a lot of power in the paper…
Now I know better.
I know that the real truth lies in actions, everyday life, and honest assessments that one goes through daily both with themselves and those involved in their life.
I have seen too many times when words on paper affected people when in truth there is no validity to the content.
No one likes to feel inferior or judged, especially when it is so easily done through words on paper.

As a parent sometimes paper is all we have to judge where our child is at compared to their peer group.
I get a pile of papers each week sent home to me for both my kids. I find myself most of the time throwing out most of it.
Paper has lost its power.

As I said in the beginning though…a victory for Kannon!
3 years ago he could not even test. He was unable to sit still, answer any questions or understand what they were even wanting out of him. His numbers "on paper" were catastrophic.
0.01% was a common number I saw in relation to his percentile scoring…
"Well below average"…"Severely low"…all common words I saw over and over again.
In fact in those papers was even notes about how "his mother was in tears" due to the hours of frustrating tests without any positive outcome(s).
Awesome. I made the papers too ;)

But this time, this time around he was not only able to be tested, but he got through all the tests!
He was able to sit still for the hour and a half 3 times a week for months and be asked all these questions without falling to pieces or crying out of frustration.
He did it.
The real victory is that he was able to test, not what the results were…
He was able to sit through the questions and pictures and charts. He tried his hardest and did what he could with all the standardized BS that these tests run him through.

I couldn't be prouder.
He withstood the time, the pressure, and the frustration and was able to overcome in my opinion whatever was on that piece of paper.
Whatever outcome or result that was written on those papers didn't matter at all.
I have become tired of reading papers on Kannon about how "behind" or "below average" he is...

The years of sacrifice, hard work, and grit have outweighed any words or numbers.

His teacher came up to me after our meeting and told me what an honor it's been to work with Kannon. She said what a joy it is to see him every day and to see all he has overcome.
She said that kids ask about him all the time when he's absent, wanting to know if he's ok and when he will be back. He even has a group of boys from his mainstream class that play basketball with him at recess every day now…he told me he has friends he plays with now. He has friends :)
She also said that there are few people she has come across in her life that make her want to be a better person…and that Kannon was one of those people. That she can't help but want to be better and work harder because of him.

Great job buddy.
Not only did you overcome adversity, tests, perceived realities and stereotypes, you came blazing through that finish line shining brighter than anyone could ever write about on paper.
You even managed to inspire those around you. People who were there to help you came out learning from you.

My heart is full of pride.
Maybe I helped you out a bit in all of this, I don't know.
I don't care.
All I care about is you overcoming that stupid piece of paper.
I hope more people will learn that anything that is written about them is pure speculation.
Truth or not, don't let it define you or affect your truth.

If you know yourself, really know yourself, not what others think they know about you or write about you…none of that matters in the scheme of your life path. Words or numbers should not break ones heart or spirit…ever.
What matters is results, and the majority of opinions and truths around your everyday life.

Kannon continues to overcome and inspire me with his actions and his sense of self.
He could never be swayed to believe he is anything other than what he knows he is. He draws it out every day, ironically on paper.
Castles, happy every afters, smiles, sunshine, people holding hands, friends, kind words...

His truth.