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 19, 2011

A great reminder. A great party. A great day :)

I will admit that I have been in quite the funk the past month...
Things got to me, and I lost a little of my normally optimistic and joyful perspective.

It happens.
Life happens.

Anyways, I feel better...I am back on track and my heart is well on it's way to being full with joy again.
One of the things that put me back on track was a Birthday party that Kannon and I went to over the weekend.

It was his first Birthday party invite :)
It was one of his classmates, and one that Kannon likes to play with and they get along great...
So of course we were going.

It dawned on my while we were driving to the party that I was unusually calm.
Not that I am the type of person who gets nervous or worked up, but I do tend to feel anxious at times when taking Kannon into unknown social situations...I never know what to expect.
From him, from the environment, etc.
None of these thoughts came across me as we were driving to this party...and it made my heart content.

I knew that the other kids there, like Kannon, had Autism.
I knew that the other parents there understood all I have and am going through...
I knew there would be yelling, hand flapping, movie echolalia, all the beautiful ticks that Autism brings to the surface of these amazing kids...
More importantly I knew that Kannon was going to be surrounded by his friends...even if only through school, they were still familiar faces to him that he was seeing outside of their normal environment.

This made my heart happy.
It made Kannon's heart happy.
The most interesting thing of it all was that Kannon behaved beautifully.
No tantrums, no non compliance, no yelling...
Just smiles, laughter, and a very calm body.
He sat still, he listened, he never once blurted out his Scooby Doo movie that is currently running through his head...

In a way, it was as if he was very normal.
All these kids were great...no problems, nothing...just pure joy.
It really was a sight.

Maybe they knew that they were in good company.
Maybe they understood that they could really be themselves without demands being placed on them.
Maybe Autism really is that tricky.

Or, maybe they knew that they were at that moment surrounded by true love and compassion.

It had to be something in the air, because it was awesome.

Whatever it was, it reminded me that I do need to always try to see the positive in all of this.
I need to let my guard down, I need to allow Kannon to experience his life.
I need to be able to watch him without fear of judgement or intervening.
I need to let go of my past insecurities...

Most of all I think I needed to be reminded that there are tons of other kids out there just like Kannon.
There are tons of families living with Autism.
I am not alone.

I am not alone...
Neither is Kannon.

peace :)

Wednesday, July 13, 2011

A day on the job.

It is my "job" to take care of Kannon.

The thing, is that with most other jobs you get to end your day at a certain time.
Not with this one.
I get no paid vacations, in fact I get no vacations at all.
It is literally non stop...sometimes into the wee hours of the morning if Kannon doesn't sleep.
There is no office banter or water cooler talk...no adult conversations...hell I'm lucky to get any conversation most days.

Then there is the parent aspect to all of this...and not just a parent, a mother.
Not that mothers are better than fathers or vice versa, we are just different...
I don't get to send Kannon off to summer or soccer camp.
I also don't have the luxury of being able to drop him off at a friends house for the afternoon to play.
If we do any activities it requires a lot of time, sometimes tantrums, crying, screaming or negotiating of some sort.
I don't get to ask Kannon what he wants for dinner, he only can have so many things...due to diet and picky eater syndrome.
I usually end up making 2 or sometimes 3 different dinners every night...
I have to spend 3 times the amount of what normal groceries cost due to Kannon's specific needs.
I can only go grocery shopping with the assistance of one of his therapists or another adult.
I rarely meet other parents because due to Kannon's special needs we are often isolated in our environments.
To be honest, I have never had a parent of a neurotypical child approach me ever...even if Kannon attempted to talk or play with their child...so play dates are non existent.

I sat on the park bench this afternoon while Kannon was playing with one of his therapists and I watched all the other kids and parents around us.
Most of the kids were laughing and playing without a worry in the world.
Other's were being naughty...some were in their own world playing.

Then there's Kannon.
A therapist always at his side...with their notebooks and clipboards taking notes on his actions.
His hands flapping out of control, making strange noises, and wandering all over the place.
He doesn't want to play on the playground, today he wants to wander around in the bushes and look for rocks...his pockets full, his therapist behind him noting the random 3-4 word sentences that may creep out of his mouth...
Yeah, he gets a lot of looks.
Most just curious, some judging, All of them notice that something is "different" about this kid.

Then there's me.
Off in the near distance watching it all.
Wishing so much with all my heart that he could be normal for just a day...
Just one day...without all of this business.
Having a week of quiet in our home without people constantly coming in and out for therapy appointments.
No more therapists on his heels all the time, no more having to "earn" play time,  no more having to be told to have quiet hands or quiet body, no more daunting stares from everyone he walks by...
Just one normal day for him.
He deserves that.

Selfishly I say a wish up to the sky for a day that I can be normal too.
Just feel it if anything.
Feel normal.
Feel that I can turn my back on my child for one second and things will not fall apart.
Know that he will be alright walking on his own.
To not have little kids run away from Kannon laughing at him and calling him cruel names, all while I watch in silence.
Know that I am not to blame for all of this...
That his condition is not my fault.
To really feel all of this is my wish.

If this really was a "job" I would have been fired by now.
I have broken all boundaries, protocol and rules.
I have had to feel so much every day without thought.
It just happens.
I have no choice to call in sick.
I have no choice in the passion I feel towards my job, it just is.

I am absolutely doing the most important job out there.
I believe that.
I wish for the future parents out there who get the same job that I do that other people can find the beauty in what we do too.
That we are respected in our work.
Because right now, unfortunately until Autism is better understood we are looked upon a lot of the time as "bad parents"..."unable to control our children"...

The patience, the love, and the passion we feel is because of these little people given to us.
And we do this job because it is necessary.
Not because we have to.
Because, we really have to.

Just needed to vent a bit.
In hopes of creating a better understanding...

Also, if you ever see someone sitting on a park bench alone, smile at them...
And if you see a little person who seems "different" walking to the beat of their own drummer...smile at them too.


Wednesday, July 6, 2011

Organized chaos

I did a school project years back that was titled this.
It simply stated an Interior that at first glance was so chaotic, cluttered and messy that you didn't know where to start shopping....
But once you gave it a chance and navigated through things you realized there was an actual plan to the space, it had order and purpose.

Obviously this could be applied to Kannon too.

At first glance you may see a wild, unorganized child that has no direction or "start" to him.
Then...IF you give him a chance you begin to see the beauty in his order...in his direction.
It all makes sense when patience and acceptance is applied.

This weekend was a good showing of chaos...it was a tough one.
A long, tough 4th of July weekend.
And when I say tough...believe me, it goes above and beyond the beyond of it all...
Days like these are ones when I learn the most about myself...about where I can improve.
Kannon was very agitated this weekend and his "behaviors" completely off the charts.
Kannon's behaviors have been unmanageable at times the past few months, and honestly I have stopped trying to figure out "why".
He is not willing to cooperate or participate in much of anything without a huge tantrum.
Saturday morning it took me an hour and a half to get him to put on his bathing suit so we could go to the pool...and he LOVES the pool, so obviously something inside his brain was itching at him enough that he had to go through this very long tantrum to delay our outing.
He screamed, threw his body on the ground and eventually wedged himself under his sisters bed so that no one could physically reach him.
He had checked out.
He was unreachable.

So, as sometimes happens we have to wait.
We were all ready to go, bathing suits on, backpack packed up with snacks, juice, games, towels...
But no Kannon.
He was in his own world right now...one that I have become used to and it is never easy for me as his mother to watch him go there.
It hurts my heart more than I can explain.
I hate watching him unwind, loose control of his thoughts and feelings and just collapse into these physical tantrums.
I hate seeing him cry, I hate hearing him scream in pain...but I have gotten used to it unfortunately.
Unfortunately, it is part of the deal and no amount of hugs or kisses or love will pull him from this place.
He went back to his place a total of 5 times this weekend...
Obviously he needed to work some things out in his mind.

He just has to go there sometimes.
So we wait.
We wait for him to come back to us and to his place of organized chaos...
Because quite honestly with Autism that is all it ever really is.
Chaotic, yet calm.
Confused, yet clear.
Frustrating, yet understood.

At least we ended the weekend on a good note.
Kannon got to look up at the sky and watch the fireworks...he loves fireworks.
His face lit up with a smile and it stayed there for the 20 minutes that his eyes sparkled with delight.

He was happy...
He had come back.

And thank god I got to take a much needed 3 hour nap on Tuesday :)