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

Thursday, October 17, 2013

magical explanation

OK Autism, you got me.

I was absolutely convinced for about 6 months that Kannon had not only given Autism a good kick to the you know what, but maybe it also decided to go and take a nice long vacation somewhere...
Preferably cold, and miserable.
Well, I was wrong.

Kannon did give it a good fight, and it did take a break for a bit...but it's back and with a purpose. I have to say after these past few months its purpose of choice is unknown, but man is it hard to swallow.

Kannon's ticks are back, and some new ones that I have never seen him have came along too.
His verbal is through the roof. To the point of him overlapping videos mid sentence...
"Jack crawled up the beanstalk...and kissed the frog prince...so he could knock you over the head...the clock struck midnight and she ran down the stairs...fee fi foo fum..."
This goes on over and over until I physically have to redirect him to some other area and talk to him about something else, for a minute...then he's back to the verbal confusion and noise.
It really is very hard to watch.
Thank you very much Autism. Thank you for reminding me just how powerful the human brain is, and  how absolutely nothing can change the neurological magic you have made all up in there.

Many people continue to ask how I do what I do.
I think what they mean is how do I "deal" with Autism and it's constant demands.
How do I juggle motherhood with Autism, because it is different...not necessarily harder, but very different.
My answer would be that I try to find those moments of magic.
Moments that mean something bigger than this reality.
I have to believe that there is a purpose to all of THIS.
I refuse to believe that these indignities Kannon suffers are without lesson...without some sort of heart opening crack that would allow hope to creep in.

My heart cannot accept that at the end of ends nothing will have been learned.
By myself, by those around me, by humanity...
Kannon has opened my world up to differences. He has opened my eyes to truth. He opened my heart to pain, light, and growth unimaginable.
I can only hope he makes it out of all of this with that smile of his...both on his face and his heart.
For the past few months all I have seen is pain, sorrow, and regret written all over both.
Autism has taken him to a different place, and that is what is very hard to deal with...these moments I don't deal with well at all.

You know what makes Autism really tough?
That all children are born pure of spirit. Pure of heart, mind and intention.
They know nothing but joy.
They wake up with the purest of desires to live life and have the most fun doing it.
A child with Autism wakes up and instantly it is taken away from them.
They have no control of it. They surrender to it. Damn do they try to enjoy the simple things, I see it everyday with Kannon and his peers...and without fail their mind/body takes over. I would say on a great day Kannon has a success rate of overcoming his brain to enjoy an experience about 4 out of ten times. The other 6 attempts he is interrupted somehow by his own ticks.
This is why Autism blows.
A child's desires, no matter how heartfelt they may be are still controlled by the brain.
Damn you Autism.

This is the best way I can explain the tough times. These days/weeks/months that roll by without notice by anyone but myself and those involved in Kannon's small world.
One of Kannon's aides asked me today, "Is Kannon o.k?...He just doesn't seem to be himself..."

Someday I hope I will never get asked this question without me having the sheer panic of actually loosing him.
I never know when he will come or go, or what parts will come back and to what degree...
It's just part of the deal.

So I look every day for the magic that I KNOW is within him.
I remember the moments of lucidity, light, and hope and I tuck them away in my mind for times like these.
We all need to be reminded of the magic every now and then.
Sometimes they are all we have to keep pushing forward...to keep pushing at all.
Some of you will know exactly what I mean. I am exhausted. I am defeated...but I will never stop moving forward out of love.
Love has to be the greatest magic trick ever.

peace :)

Saturday, October 5, 2013

Silent lucidity.

Moments of lucidity were the one thing that I found tolerable of my father having Alzheimer's disease.
Most of the time he was not there, he was far away trapped in his sick brain...then all of a sudden there he was. His eyes would light up, the blue would come back almost glowing and his unmistakable smile would return to his face.
He would look right at me and for a few minutes he was back. He knew my name, his tone came back to his voice that I remember all those years before, and he was my daddy again...but only for a moment.
Then he would slip away again, back into some corner of his mind. He was gone.

Towards the end of his life I would just sit by his hospital bed and wait. Wait for moments of lucidity. We all know the love a heart contains for someone who means everything to you. I would've waited a whole week to just look into his eyes again for one minute.
Whatever it was worth, it made saying goodbye just a little easier.
It made being his daughter in the present situation a little more tolerable. For as awful of a disease Alzheimer's is, nothing compares to living with and in it.

The same can be said for Autism.

The other day Kannon had a moment of his own.
Granted he is very much here, very present every moment of every day, but he is still "lost" within is own mind...he is a prisoner of his very powerful brain.
This is Autism.

Whether he cannot process thoughts, language, situations, etc. He is constantly fighting to breakthrough to himself and to those around him. Watching your child battle like this every day is very taxing on the soul...let's just leave it at that.
So, I cannot imagine how frustrating it is for him. I just can't even begin to get my mind or heart to wrap around it...but lord knows I try.

Anyways, the other day as Kannon was sitting in his therapy room drawing away he came over to me as I sat on the couch just outside and he brought me a picture he drew. It was a very bright, textured creation that he did of pen and various papers he had lying around in his art bin. He even made a custom frame of frilled crepe paper...it was really quite something.

The picture was of him and I standing next to one another, smiling and dressed in long colorful garb.

He pointed at the woman and said, "that's mommy".
Then he pointed at the boy and said, "that's Kannon...Kannon is very happy to be with mommy in beautiful dresses."

Then what came out of his mouth made my face and heart freeze instantly.

"Do you miss me mommy?"
"Do you miss Kannon?"

Hmm. Well my first reaction to him was to ask what he meant...did he mean did I miss him while he was in the room drawing?
NO. He said.
Did I miss him while he was at school?
Do I miss you while you sleep at night?

"Mommy, do you miss the REAL Kannon..."
"Kannon is not always here...do you miss me when I'm here?"

I teared up as I looked into his eyes.
His very serious, very present eyes.

He knew that I understood what he was really asking.
I knew that he was so much more aware of his "condition" than I could ever be...he knew that even though we spend most of our days together, he is not always present.
He is not able to be as present as his heart would like.
His brain takes over and he goes away...his disorder gets the better of him.

He has moments of "lucidity" where for whatever reason he is able to break through.
I was just lucky enough to be there with him to experience it.

"Yes Kannon, mommy misses you every day...but I love you every moment because I know your heart is right here always."

"Thank you mommy."
"I love you with all my heart..."

He put his hand on my hand then walked away...and that was that.

A few minutes later he was back reciting Jack and the Beanstalk.
"Fee Fi Fo Fum..."
He muttered these words over and over as he feverishly drew pictures of beanstalks and golden harps.
His brain was back to Autism.

BUT, for a moment I had him, and more importantly he had himself.
It was wonderful.

It's those moments that my heart needs.
Moments that all humans need to feel connected to one another, if even for a second.
Clarity is a gift. One that should be recognized, never ignored or glossed over.

I am grateful.

peace :)