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

Friday, November 25, 2011

Be the change you want to see in the world...

Sounds simple enough.
It is.

Make the choice to see the good in people.
Take a moment to think before you speak.
If you don't feel good about whatever it is you are about to say, then don't say it.
Let your emotions help you.
They are there for a reason...to guide you, help you, aide you in staying on the right path in life.

I find myself sometimes feeling as if I am outside myself looking in.
Watching people watch me...watching Kannon and his "quirks"
I am constantly introspectively guiding my thoughts, words, and actions.

This is all because I want to change people's perspectives...including my own.
Kannon is teaching me patience, love, and a whole new world I never knew possible.
Even if only one person sees my emotional discipline...sees my eyes watching them watch me...sees that I am dedicated to my cause, to my son...then it is worth it all.
Even if I have to blindly believe in my own cause, it is still worth it.

I have many moments during my day that I go above and beyond the "norm"
Good for me.
I don't need a pat on the back, I don't need praise or applause...I just need my soul to feed on the action itself.
I need to do my own work.
For someday it will just come naturally...someday the work will just be...will transform into self.
This is also not why I write about these moments. I write to hopefully raise awareness and hope to situations some may not understand.

This is what I strive for.
Understanding. Hope. Love.
Moment by moment I strive for hope that I can pass through my heart into my children's without hesitation...without pause.
For after learning that I can trust myself...my actions...my truth, then I will know I am of pure intention.

I want people to like other people.
To pause and think before they speak.
To watch before they pass judgement...hell, to not pass any judgement at all.
Just to observe, know and find peace with it...

Take it or leave it, it is a choice.
But don't judge or speak ill against another whom you don't understand.

And, if you find yourself on the other side of this...
Let it go.
Don't allow others to affect your path.
Do not feel that their opinions or judgement is worthy of your time, worry, or contemplation.

I am not lecturing.
I am not trying to enlighten or speak as I know it all.

I am simply speaking from my heart, my experiences, and my hopes for a better tomorrow for us all...
Not just my son.
For everyone.

I watch Kannon draw pictures every day of Rainbows, Sunshine, Smiles...
It is within us all.

No matter how "damaged" we may or may not be.

I have seen Kannon pushed 15 feet from a playground, called "retarded" to his face, "stupid", "weird", I have seen kids laugh at him and run away from him, I have seen adults frown at him and shake their head in disapproval...

I have watched all of this happen to my child.
I have watched...and I am learning.

Kannon has taught me through example just how to be that change I want to see...
He is still laughing, still trying to play with kids who make fun of him, still smiling through the tears.

This is strength.
This is love of life.


Friday, November 18, 2011

hello autism, it's not that great to see you today.

There are just some days that Autism takes over. Period.
No warnings, no easing into it....it just kind of smacks you in the face.

Today was a very important day for my daughter, Kalena.
Every year her Montessori school has a Thanksgiving feast where all the families cook a dish, the kids get dressed up in their paper bag pilgrim costumes, sing some cute Turkey day songs, and we all sit down and eat.
Kalena was beside herself that this year Kannon AND I were going to come with her.
She was bouncing around all morning so excited for her friends to meet Kannon and for mommy to hang out with her to see her sing and sit and eat with her...
As I have mentioned in earlier posts, I have few opportunities to spend quality one on one time with Kalena, so any chance I get I jump at it and make the most of it.

So off we went, Kalena talking the whole car ride about how she "can't wait for everyone to see her brother and mommy"
Then...for whatever reason, the minute we got to her school Kannon transformed into "Autism man"

Hands flapping out of control, his mouth running a million miles a minute spatting off any word his brain could conjure up, and the pacing around tables while letting out loud grunts every now and then that tend to frighten people and bring a shit ton of attention his way.
It was awful to watch his body completely go out of control like this.
His brain was clearly overcome by Autism and there was not a damn thing he or I could do about it...
He was gone.

The normally sweet, easy re directed boy was spinning around and around yelling and flapping...

Uggghhh I HATE moments like this.
Not just because it is like watching your child become possessed, but also because you don't know who the hell to get mad at...or if you should get mad at all.
Clearly, as I have learned over the years of this there is no one that you can yell at enough for you to feel better about what is happening...no amount of anger, screaming or crying will make it better...or go away.
You just have to "ride" it out and allow the behaviors to run their course.

But here is what made today the most painful for my heart.

It was having to say goodbye to my little girl after only being there with her at her school for 30 minutes.
Her brother was unable to handle the environment there and I was unable to juggle trying to manage his behaviors while attempting to spend quality time with her...
I got her a plate of food while having to pull Kannon's head out of the food because he had to smell everything and he even managed to stick his finger in a few of the dishes...simply lovely.

I set her plate down in front of her, her back to me I bent down and whispered in her ear that mommy and Kannon have to go because Kannon is having a really hard time today...
I wanted to hug her so badly, but since one of my hands had a kung fu grip on Kannon it was physically impossible to do so.

I heard her quietly say "ok mommy, bye"

As I walked out I looked back at her after scolding Kannon for his last attempt at sticking his finger in the mashed potatoes and there I saw why it is I HATE Autism today.

Kalena had her little head down with tears streaming down her face...quietly crying in her food while all her classmates around her chatted, laughed and ate their food with their mommies and daddies.
There she was alone, crying, no one sharing this event with her...
I wanted more than anything to run over to her, and just cry with her.

Instead, as Kannon began to scream at the top of his lungs because he "DOESN'T WANT ICKY FOOD" I had to calmly walk out of the school and into the parking lot with my head up and a calm demeanor.

I put Kannon in his car seat as he was still yelling about the icky food and when I got into my seat I just started to cry...

I hated that today was ruined because of Autism.

I hated that I couldn't get it "under control" like I normally can when in social settings...

Most of all I hate that my little girl cannot completely understand all of this.
Why mommy is always tired, why I am always running around doing things, always going through stacks of papers and rarely having the time to just sit down with her and watch an entire movie...

Why her brother sometimes acts the way he does...
Why he was hitting and biting her this morning for no reason...
Why he can't just have a quiet mouth sometimes...


So after taking many deep breaths and calming my emotions we drove home.
Back to his safe place.
Back to his kitchen that has "yummy food"
Back to his paper, crayons, stuffed giraffe, backpacks, and everything else that brings him peace...

And after about an hour of being back home Autism left us...
It went back into hiding, deep down into Kannon's brain where it likes to stay...
No more yelling, no more hand flapping, his body was calm again.
He was able to listen, follow directions and sit still at the table and draw.

This is when I want to rip Autism out of his head and punch it in the face for what it just did.

For what it did to Kannon...and for what it did to Kalena on her very important day that she was so looking forward to.

As lovely of an analogy that may be, I know in my heart it wouldn't make any difference if I did.

Autism is resilient like that.

I just hope Kalena's heart can continue to forgive it.
I hope Kannon's body can continue to handle what it does to it.

But mostly I hope that someday I can punch Autism in the face...gut...whatever...
Just as long as it feels how much it can hurt...how much something unexpected can knock you on your ass and not feel so good...

I will also thank Autism.

It's a love / hate relationship.

For now at least...and especially after days like today.

peace :)

Monday, November 14, 2011

To be a parent

As I lay on the couch, my heading screaming I hear the familiar sounds of Kannon's current favorite movie, "Cloudy With a Chance of Meatballs"

The lines from this move are what he is using to express himself...
It changes from week to week usually.
He will have a favorite movie of the week and from that movie Kannon chooses to communicate with me, with his world.

Technically speaking this is called:


repetition of words: the compulsive repetition of words spoken by somebody else, often a sign of a psychiatric disorder

Most of us in Autism world are very familiar with this term and live with the repercussions daily.

As I mentioned earlier, my head was pounding...no screaming.
I have been suffering from migraines for the past few months for some reason. 
Wow are they fun.

So as I laid down Kannon sat next to me, put his hand on my forehead and said, "momma ouchie?"

"Yes Kannon momma has a headache."

"Oh...well I have a plan, water goes in the top...food comes out the bottom"...
( A line from his movie )

"Oh, I see baby...that sounds yummy. Mommy needs to rest for a bit though o.k buddy...can you sit nicely and watch your movie please?"

He sat down next to me again, put a blanket over the two of us and sat there...
I quickly began to dose off, then as I was closing my eyes Kannon put his hand on my leg and said this:

"It's o.k momma, I hurt sometimes too"
"I hurt too"

He then looked straight ahead and for the next hour sat there silent.
Watching his movie as I rested next to him.

When I decided to sit up and make us lunch, Kannon put his hand on my shoulder and said, 
"All better mom?"

"No buddy not quite, but I will be just fine don't worry"

"I know mamma...I know...you have to be"
"You have to be"...

So, even though Kannon may not be able to always express his emotions, my god can he ever speak from his heart.
I am always amazed at his creative abilities to get his point across.

He is right, I have to be o.k.
And I am sure he does hurt, more than I will ever know...more than he can ever accurately express to me in HIS words.
But for now, I will continue to listen to everything he is saying, as I know he is trying to always tell me something.
I have to listen, whether it is movie talk, or the 3-4 word sentences he gets out every now and then.
I have to know that he is o.k somehow...
Just like he has to know I am o.k...

I have to be...

peace :)

Monday, November 7, 2011

Good morning :)

I sometimes find that as a mother I view my children as blank canvases.
In the most loving way of course...

I mean that there are moments when their actions surprise me, when they create a picture for me I never knew possible.
Their abilities to function in every day life...to truly blossom outside their exterior.
Simple things.

I am constantly floored by my daughter, as she tends to come up with new skills by the day.
I watch her get herself ready in the mornings...pick out her clothes, get dressed, brush her hair...
I watch her sit on the couch by herself looking at a book talking to herself about all the things she sees...
I watch her sit down next to her brother and snuggle up to him while they watch a movie together...
It is wonderful.

So, today I had to walk Kannon to his classroom as he was late...daddy's fault :)
Anyways, as we walked up to his classroom I watched in awe as he took his own backpack off, hung it up on a hook outside the class under a plastic laminated name card that did in fact say "kannon", then he preceded to take out his lunchbox, daily journal folder and walk into class with a smile on his face and said "good morning" to all his teachers/aides...

I was left standing outside with the biggest smile on my face.
He then turned around, looked at me and said "goodbye mom...I love you"

My son, who just 3 years ago couldn't say "I love you"...
Couldn't say anything really, in fact if memory serves me he had a vocabulary of 10 words.
My son who at age 5 was still in diapers...still needed help with feeding himself...still unable to walk by himself without bolting off into the distance any chance he got...

Now look at him.

He is functioning.
He is able to do his classroom routine without my help...without any prompting...without me.
It was so wonderful to see all of this.

It may seem small to most people, but believe me as a mother to a child with Autism it is moments like this that give your very much aching heart a big hug...
It validates all the hard work we do every single day in hopes our children will and can function in society...even if it is moment by moment.

As small as an act it was doesn't matter in the scheme of things.

What matters is that there is hope.

What a great start to my day...

What a beautiful little man I am raising.
He is truly just what my heart needed in this life.

Count your blessings every day...every moment...they are all around you if you allow them in, no matter how small they may seem.
Sometimes they may be the path to a great journey ahead.
That's what my heart would like to believe...