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, June 23, 2011

Sleep? Not in this house...at least tonight :)

As I write this Kannon has been trying to go to sleep for the past 3 hours.
He has come out of his room 3 times, gone to the bathroom twice and has not stopped talking to himself for even a minute.
He hasn't done this in about 3 months, so I have the energy to stay up and listen to him just in case he has one of his tantrums...I am not too tired so that I can't stay up for the rest of the night if I need to.

It does bring back painful memories though of the nights when I would be doing this for the 5th day in a row without much sleep...knowing I would have to be alert in the morning for therapy, for life, for society.
I was a zombie.
I am surprised I survived to be honest.

I am almost ashamed that I drove with my kids in the car with only 2 hours of sleep for the week.
It is amazing what the human body can make it through.
It is amazing something "bad" didn't happen...

I watch those survival shows, Man vs Wild...Dual Survival...
I always cringe at their ability to survive what they do in the conditions that they do.

If they did a reality show on living with Autism it would be 10 times worse.
No joke.
It just wouldn't have the pretty scenery...no green trees, landscapes, sunsets...

No, instead there would be a messy house, bags under our eyes, dirty laundry everywhere...
Reality. At it's raw core. At least for those of us who know Autism.


But you know what?
I made it out alive, just like those survival guys.
I am still standing.
I am still able to come back to this environment when I have to.
HAVE to.

Not for cameras, not for a profit, not for entertainment.

No, I come back to it because Autism makes me.

It's o.k though.
At least now I am better prepared for it.
I have my survival gear.
I have the knowledge and strength to get me through it all.

SO...do I get some sort or prize?

Yes I do.
I get Kannon.
The best prize ever...


As I typed that last word he came walking down the stairs peeking around the corner at me...
With a pillow wrapped in his arms...he has also changed into school clothes...button down shirt, jeans...
"Momma want to sleep...?"

No. Kannon, let's do this.
Let's hang out...
Let's wear out Autism tonight.

I'm game.

peace :)

Monday, June 13, 2011

ego? not in this house...

Egocentric: "Limited in Outlook"... "Interested in only personal needs"...

I lost count of how many times I have seen this word used in Kannon's piles of reports.

By nature, apparently, children with Autism have a tendency to be egocentric.
Obviously not by choice, but by the graces of Autism they exhibit this behavior of looking as if they are in their own world, that nothing else matters, only their agendas.

I however, look for breakthrough moments.
We all do as parents.
Even the smallest of victories are the biggest of differences within our hearts.

Kannon had one yesterday, and I had to share it.

Kalena had her big dance recital on Sunday, so most of last week and the weekend was dedicated to running around getting her to dress rehearsals, buying tights, make up, snacks, etc...
I barely had a moment to stop and breathe...but as always everything got done...in the nick of time.

I was a parent helper, which is something I may never do again...being in charge of 15 girls with hair and make up and all the drama...good lord it was the longest 3 hours of my life.
Anyways, point being is that I was not able to be with Kannon during all the excitement to see how he was handling everything....the noises, the crowds, the auditorium...

Kannon was with his dad, so I knew he was fine, I just wanted to make sure he was FINE.

Well the show went off well, Kalena danced her little heart out and made me so very proud.
Another moment I did allow myself...I allowed myself to put Kannon's needs on the back burner so I could really be there for Kalena.
She was so excited and so nervous, that I needed to be there for her at this moment...not worrying about if Kannon was holding his ears because of the noises.
I let go, I was able to give myself to Kalena 100%, and that can be a rarity around our home with Kannon's demands.
It felt really good to be there for her, and my heart needed that.

After the show was over all the family came pouring backstage to collect their little ones and give hugs and flowers.
And there in the corner by the back door I saw Kannon.
Waiting quietly by his dad holding a bouquet of purple flowers, which is Kalena's favorite.
The moment he saw me he walked towards me and said "Where's Kalena?"
I gave him a big hug, then we walked into the room where all the girls were waiting.
Kannon walked up to Kalena, hands her the flowers and gives her the biggest hug and says "Good job Kalena, you are a Princess"
He touched her face, and said "So beautiful"...
Then he touched her long dress, smiled and told her once again "good job Kalena"...

It had never been so clear that Kannon was proud of his sister.
He was beaming with joy that he got to see her dance in her costume, and that she was his sister.
He continued to tell anyone that would listen that she was his sister and that she was a Princess...

So take that "egocentrism"

Kannon clearly over took you on this day, and man did he ever let his heart pour out in pride.
This day had nothing to do with him, and he could care less...he could care less that Kalena was surrounded by people and getting all the attention, he could only care about how beautiful she looked in her make up and costume...and how this moment was clearly hers.

Moments like that show me that Autism can be overcome.
Moments like that show me the heart is the most powerful tool we have within us.
And, moments like that showed me Kannon really can be an older brother, that he can do all the things an older brother should...


Monday, June 6, 2011

No good deed goes without reward

I told myself this over and over again one day while I sat in a room waiting for Kannon.
It all comes full circle sometimes.

I believe that what I am doing in this lifetime is with absolute purpose and conviction.
My passion stems from a love I never knew possible until I had my beautiful kids...they instilled within me what I already knew but had forgotten once I was born.

We are all spiritual beings having a human experience, not vice versa.
I knew all of this was my path.
I just forgot how to find my way.
I knew I would have a "special" child, but I was too busy growing up myself...
There was a reason that even in junior high I was one of the only people there who volunteered my free time to work with the "special education" class there.
I would eat lunch with them, walk around during class time in the halls with them so they could avoid the crowds, sit in the library with them and just "be".
Just be their friend.
I think I enjoyed it sometimes more than they did.

And now that I have a special guy all to myself I must remind that old passion of mine that it is there for a reason.
A reason bigger than I will ever understand in this human experience.
A reason to help my soul grow, expand, create better environments for those who need them.

Just like any mother tries to do every single day for their child.
We want a beautiful experience for our children.
We want a beautiful experience with our children.

It all comes full circle.

So as I sat waiting that one day for Kannon while he lay motionless on the Cat Scan table I cried.
I cried because even though I had wished so many times Kannon could just sit still for a minute, well...I take it all back.
I cried for all the above reasons.
I even left out the "special needs" in the moment.

I was scared for the first time in a very long time.
I could not protect him.
I could not create the outcome in all of this.
It was not in my hands.
It was in his.

Kannon is fine...better than fine, he is vibrant.
They found nothing in the scans, thank god.
All those sleepless nights of him complaining of his head hurting and the crying...what was it?
At that point I could care less.
His head scans came back negative, he was fine.
He was smiling again.

Was it Autism?
Were they just headaches?
Damn you Autism.
Why must you create impossible diagnosis' sometimes with very real, very intrusive symptoms...

Anyways, this whole experience was very real and very intrusive.
I will never forget the cloud it put over us.
It was a definite wake up call for my soul.
It was one of the biggest rewards I could have ever received.
Full circle right back to the place I know I belong, the place where I love nothing more than doing good deeds all day long.

As Kannon's mom.