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

Monday, September 26, 2011

The emotional balancing act of everyday life.

There are those moments when I realize that I am truly living in the moment with Kannon.
I am in it for him...not for myself.
I watch him run through the park hands flapping, words flying out of his mouth at a very loud volume, people staring...and I just smile.
I just smile at his energy and desire to be free.

I watch him see a little girl who has a balloon, his eyes light up and he just watches the balloon sway around in the wind...

I watch him roll around on the floor at stores searching for "treasures" and it makes me chuckle every time no matter how many glares I get...

I watch him stare at himself in the mirror making silly faces at himself and laughing...and it makes me smile.

I watch him draw scenes that are only in his imagination...they are truly beautiful...he takes such time with them, such care to make sure it is just perfect.

I sit next to him while he watches Scooby Doo, and I just hold his hand while he is lost in tv land...
I look at his feet, his hands, his eyelashes...I just stare at him being silent and still.
These are rare moments that I take advantage of.

I absolutely must freeze my conscious and allow myself to simply watch Kannon in times like these.
I must let him have these moments for himself.

I must.
Because when he does have an hour long tantrum, screaming...crying...yelling...
I must be able to take him back to himself when he can't.

Today was one of those days.
He was exhausted.
He had a very long tantrum that lead him to a very real meltdown of emotional levels.
His therapist could not get him back to good...he could not even regulate his emotions, he could not reach down deep enough to get himself back.

These moments are truly the most heartbreaking for me.

I stood in the corner of my room peering around and watching my boy lay on the floor in emotional exhaustion, pain and frustration on not knowing how to calm his body.
He kept saying over and over, "I promise"..."I promise"..."I'm so sorry momma"...
Mind you I had not been in the room at all, I had been in my room just listening to the therapy session leading up to his meltdown.

I decided to intervene and walked over to Kannon.

I picked him up in my arms, and for a brief moment I had the strength to carry my 75 pound son to the couch.
I laid him down next to me and put my hand on his head.
He immediately looked into my eyes and I immediately teared up seeing the pain he was in.
I gently rubbed his belly as I told him this:

"Baby, it's o.k to be sad...we all get sad every now and then. But you have to know that you are surrounded by people who love you. No one wants you to be sad, no one wants to see you cry."
He just nodded, he didn't say a word and he was still looking me straight in the eye.

"Kannon, you have to calm down...it's not good for you to be so upset."
He nodded his head again and said "I know mamma"

I then concluded by saying, "You are such a good boy Kannon, mamma is so proud of you and all the hard work you do and I need you to come back to me, o.k?"
"I need you to calm your body."

He took a few deep breaths, then put his hand on my chest and said "I promise mamma...don't be sad...I promise"

This is why I give him his moments in life, no matter how small or "weird" they may be.

Because today when I needed him to come back to me, to my moment, he did.

Life is about balance.
Even in regards to emotional warfare.
If you give, you truly shall receive...even in the smallest of victories.
But in a world surrounded by Autism, these are all that matter sometimes.

peace :)

Monday, September 19, 2011

A tale of pride

Friday and Saturday of last week myself and 4 others went on the most physically challenging journey to date in my life...
We summited Mount Whitney, which if you don't know is the tallest mountain in the Continental US.
It towers up in the sky at about 14,500 feet.
It took us about 18 hours round trip to conquer the mountain and we did it in 2 days.
We hiked up the 6 miles to camp the first day, then on day 2 summited the mountain and headed all the way back down 16 miles to our original campsite...22 miles in all.

Now I honestly have no idea why I decided to do something like this, but if I had to put my finger on it I would think it came down to proving something great to myself.

I know I am strong mentally and emotionally, I prove that every day dealing with Autism.
But was I strong enough to push myself in a situation that required both physical and mental endurance?
I had to find out.

Now that it is all over with I can reflect back on it all.
I will say without hesitation that it was absolutely the most difficult thing I have ever put my mind and body through...hands down it was grueling to say the least.
My body had never experienced pain and fatigue like that, and I still can't believe that I actually did it.

On the way down, which I thought would be the "easy" part, my legs and my knees were literally dead.
Every single step sent a shooting pain through my legs.
Oh, and on the way down it was sleeting, hailing and raining on us the entire way...so it was cold, wet and very slippery terrain.
With that said, with only 3 miles to go I slipped on a rock and rolled my ankle pretty badly.
Instantly I started crying out of pain, frustration and exhaustion.
I had a 30 pound pack on my back, rain drenching me and on top of the already physical pain I was in I now had to feel the pain of my ankle swelling in my boot with every minute passing.

I instantly reminded myself that if I can live everyday with Autism, I CAN DO THIS.
I repeated this to myself at least a hundred times on the way down the mountain...

For the last 3 miles down the mountain I emotionally broke down.
I cried off and on as I trekked down...out of pain, emotional release, exhaustion...
It was as if my body needed to release itself of so many things.
I thought about everything in my life up to that point.
I thought about my beautiful children.
It thought about my father's passing and his last few years on earth.
I thought about my friendships, my relationships, my family.
As much pain as I was in this time coming down the mountain was all mine...it allowed me peace...quiet...reflection.
It was a rare moment.
I have never cried so freely as I did for those 2 hours...my body was truly releasing years of pain.

I cried for Kannon, as if I was mourning him in some way...mourning a life I had hoped for him.
I cried for Kalena in hopes that she will one day realize how amazing her heart truly is.
I cried for my dad and how much I miss him every single day.
I cried for my grandparents and their golden hearts.
I cried for my sister and brother in law for their incredible support of our lives.

It was all very therapeutic.
I just cried...and it diverted my mind away from my throbbing ankle, so I guess it was the best thing I could have done at the time.

I came to realize that perhaps I was strong enough to make it as far as I did because of the life conditioning I have had to go through the past 5 years.
I have evolved into something because my life paths brought me here.
In a strange, perhaps cruel twist in life I have evolved into a better person because of Autism.

I do what I do every day for Kannon because I love him more than anything.
I never resent him or hate my life even if Autism takes over most of it.
I have never doubted my actions, passion, or abilities as a mother to Kannon.
I never doubted how tired I can get...how the repetition of my life everyday can get to me.
I just never knew how it may all someday come to "help" me...but on this grueling day it truly did.

Yet through all my days of survival with Autism I still doubt myself.
Over and over again.
Am I truly "enough" in the big scheme of it all.
Will I make it out of this life experience...
We all know living with Autism we don't have many choices available.
We don't get to choose much of anything really.
We just have to do the best we can with what that day brings us.

But on this day I did have a choice...I chose to climb this massive mountain.
Maybe I am crazy, but it was my choice.
Climbing Mount Whitney proved to me how strong I really am.
It proved to me I am bigger than my fears.
I am stronger than I know.
I can overcome anything.
And, the most important part of it all....


I allowed myself to be selfish to prove something to my soul...
And it was exactly what my soul needed.

What an awesome accomplishment...I have never been prouder of myself.
Sometimes we must allow ourselves the opportunity, the choice, to show ourselves just why it is what we do everyday...
Why we chose such a difficult path in life.
Why Autism is not what defines us, it is what makes us stronger...bigger than we imagined.

I can't help but wonder what Autism is doing to/for our children who have the disorder.
I know Kannon has climbed more mountains in his every day life than I will ever have the strength to do.
I know that my experience changed me forever.
So maybe Autism is not defining them...maybe it is refining them.

Just maybe.