life is full of...

:a person who uses strength or power to harm or intimidate those who are weaker...

The definition of a bully.

I mean...what is perceived weakness? Is it to willingly succumb to another's bullshit just to squash the "situation"?
Is it actually a strength disguised as such so that the actual bully feels as if they've somehow won this whole trial?
In addition, what is perceived strength or power?
I am truly struggling with these concepts.

I can't answer any of this.

I can however say that my life is filled with this, so is Kannon's.
He deserves better. He deserves the benefit of the doubt always.
He is not the weaker human in any situation.
Why you ask...

He chose a life of challenges and indifference.
He chose the path less taken.

His courage and strength in his daily life is one that I couldn't find in any fairy tale, yet that is all he chooses to believe in.
His innate being is that of a true warrior.

One disguised in a shell of a boy that loves books, yet cannot read. That loves fairy tales, yet will never find his princess, and one that continues to pull the wool over his eyes yet he manages to see through every time.

In times like this I have to look to his heart for strength and guidance.
Mine is old, tired, and very confused.
I need his straight arrow of faith towards life.

Life is full of thieves. Full of questions and fears.
Full of bullshit.

I am grateful I have Kannon to guide me through it all.
Today Autism is a gift.
Today I will be grateful for all the past hurdles I have overcome, so that I may have the beautiful boy I do today.
Grateful for his strength and heart.

Today I am full.
Tomorrow may I be empty of it all.

peace.

notes to myself

If ever I get lost beyond my own perception for whatever reason I want these notes to remind me how I feel about my journey so far...

* Most of the time as a mother we don't have choices. You made the choice to be a mother, so anything after the fact is now your job. Have fun with it and always learn from your kids.

* Patience. Structure. Love. These 3 things are what I NEED to raise my child with Autism. Repeat it over and over if necessary.

* Find your balance every day. Simplify things so that you can do so. Make mental or physical notes of moments that make your heart smile...then remember these moments to help ground you when you are feeling lost.

* Don't forget your passions. Remember you are still your own being. Don't live entirely through or for your child. Live for yourself and your loves too...keep that balance within you, I promise it will make you happier.

* Get comfortable with being uncomfortable. Seriously things get messy and awkward so you better just settle in and embrace it.

* See past the physical. Look inside and hear what the heart is saying...I've had to learn to talk to Kannon's heart because he doesn't have the words most of the time. Know that his mind is full of chaos and that he's just trying to figure it out. Know his heart and how full it is. Talk to his heart.

* Don't be afraid to show your vulnerable to your kids. You are not perfect and you don't want your kids to think perfection is a goal...weakness can be a blessing, a learning tool, show this to you kids. Say I'm sorry...Say thank you...it's o.k to treat your kids as equals in the arena of respect. They deserve it just as much as you do.

* Laugh at yourself. Seriously you've got years of mess ups coming your way...laugh it off and move on.

* Remember your arenas in life: Mother. Disciplinarian. Friend. Advocate. Audience. Student.
Take on all these arenas as if my life depends on it...because ironically it does.

* Be kind. Be compassionate. Be open to new experiences and opinions. You are not always right so don't be stubborn enough to chase people away...listen and learn always.

* Be gracious. Gratitude is the best gift you can give your soul. It is the result of a life lesson. Good or bad be grateful for it....and take gratitude day by day, it is not meant to be rushed.

* If you love or appreciate someone, tell them. You truly never know time lines or circumstances. It just might make all the difference in both of your worlds.

* If you ever have the opportunity to say goodbye to someone, do it. Give your heart that gift. Even if you see them tomorrow, give yourself moments of opportunity.


 That's all for now...

peace.

Happy Birthday Kalena

A mothers wish...

I wish that when I physically leave this earth my children will love each other as much as I loved them while I was here.

I know this blog is based on my son who has Autism. All the adventures we have had...all that is still to come. I share in hopes of those who read my stories will try to open their minds and hearts to those who are different than they are. I hope people realize the beauty that lies beneath the surface and try to experience love for others through the eyes of a mother who has had to redefine her definition of motherhood, love, and human understanding.

Today I write for my daughter. The "other" child.
The one who has always had to stand in the wings while her brother constantly took center stage.
Not because he was better...simply because he had to.

She always waited. She always knew inherently that her brothers needs came before hers.
Beautifully without complaint. She just accepted her place in our family and always had a smile on her face...and in her soul.
This is love.

This is Kannon's sister.

Not today though. Today, this is Kalena.

Yes, she has a name. A beautiful one.

If I had to use cliches, which are amazingly effective, I would use these for Kalena:

- The wind beneath my wings...
- The foundation to my castle...
- The silent partner...
- My sunshine...my only sunshine...you make me happy when skies are grey...

She is simply the cloud that holds our family skies together. Without her existence this family would not work. It would not be balanced, interesting, or a counter point to which I refer to every single day.

Today is her Birthday.
What a gift to be celebrated.

So in her honor I had to share her glory, if only for her to read when she is older.
So she knows how precious she has been to me over the years. So she knows that without her being by my side during these tough years I would not have had the strength to claw my way out of the holes Autism buried me in at times. She really has been my best friend in everything I have been through.
I am blessed to call her my daughter.

I was given the best of both worlds.
One with chaos, confusion, unknown territories and fear...to help my soul grow.
The other with solid ground, blue skies, clear air and hope...to remind me of the simplicity life can hold.
They have brought balance to my existence and to one another.

But the best gift of all...

I know that when I leave this earth they will have each other.

Their love will carry them through, no matter what the time will be.

Love gets love.
Love gives love.

At the end of the day we must honor the balance of those in our lives. We must accept that we have no control of others lives and we must find the beauty in our own lives.

It's not all rainbows and lollipops...
But as I have been taught through my children, we can make our own castles, question every situation, and make good choices.
Friends are a choice, but family is given to you for a reason.
Life lessons are powerful, painful, humbling, and even laughable. However, they are lessons to be learned from, to grow from.
Ironically, my children have taught me more than anyone in my life. They have showed me an innocence and clarity that was beyond my capability. I am eternally grateful.

Happy Birthday Kalena.

You are truly a gift worth celebrating.

peace.

His shining moment...

The main thing about Autism that I have learned thus far is that, you just never know.

You never know "why" this happened to your child in the first place, or to yourself for that selfish matter.

Why there are so many different therapies for Autism, what they actually do, and if they are effective.
Sometimes it doesn't matter because to actually receive these services is an act of god.
You have to understand the paperwork, the process, the loopholes, the laws, and then have the time to be proactive about accessing all of these.

I want to share a glimpse into my boys journey, show you his beautiful soul, and how he decided to know who he is in all of this.

I cannot imagine being a part of this world without the gift of language. Language is different than communicating, and Autism alone taught me that. To have the ability to speak your mind when you want and how you want is invaluable...and at other times it is taken for granted.
However, to be able to communicate with others is on a whole different level. Sometimes you don't need words. Sometimes you just need to care enough to have the patience to listen in other ways. People are always singing some song in their life, it takes true love to be able to hear that song without words.
Kannon never had the luxury of speaking his mind, needs, or joys. He never chose to get frustrated over that though. He always found a way to find peace with himself and others.

Here he is a video of him singing "A Dream Is A Wish Your Heart Makes" from Cinderella.

The words could not be more perfect for his soul. This boy who fought every day for words, for the gift of communicating, and there he was singing his heart out to a room full of strangers. This was his choice in how he knew who he was in his world. How he wanted to be seen, and heard.

Even if you don't have the words, your heart will sing a tune that others will hear if they try. Kannon once told me years ago after a very hard day of living with Autism, "Momma it's o.k you don't know my words...my heart loves your heart, they will hold hands forever"...

Oh Kannon, if only people knew how hard you worked for this moment they would just melt. You are a fighter, a survivor, and my hero. Thank you for showing everyone your hearts tune.

Autism is not ugly, it's very much misunderstood by society.
April is Autism Awareness month, please if even for a second know that people out there living with Autism fight so hard for everyday life. Despite this, they still get bullied, called names, and are left out of most social interactions...

If you would please pass the word about compassion.
Pass the word about Truth.
Acceptance.

Autism needs all of this, and you just never know whose world you may make brighter by trying.

peace.

A letter to Kannon on his IEP day.

" I hope you dance..."

I love this saying...and the song. It's beyond beautiful the message it sends.
I have to write something today for Kannon so that someday when he's older he can read this and know how loved, how cherished he is. I have to let him know because days like today happen, they happen at least once a year and they will continue to happen without fail.
Why? What?
Why, because he has Autism.
What, today is his annual IEP meeting with the school district.

IEP: Short for Individualized Education Program, an IEP is the legal document that defines a child's special education program. An IEP includes the disability under which the child qualifies for Special Education Services (also known as his classification), the services the team has determined the school will provide, his yearly goals and objectives and any accommodations that must be made to assist his learning.

First, I have to say I have never loved these meetings. They are extremely literal. They are painful for the parent(s), and they require a butt load of paperwork...who doesn't love that?
Second, the round table atmosphere should lend to collaborative efforts by all parties in the interest of your child, but sometimes that doesn't happen.
Lastly, why I have to write a letter to Kannon today is because I want him to understand how none of these papers define him. None of these numbers or goals really matter in the bigger scheme of life.
To be defined by piles of papers, tests, goals, assessments, and graphs is nothing anyone would want.

I want Kannon to know how loved he is.
I want him to throw all these papers away someday when I am gone...
I want him to be free of all this.
I want him to dance.

I need him to remember how last month at Jillian's wedding how she put everything on hold to find him, bring him up to the cake table while she cut her cake and how she gave Kannon the second piece of cake...right after her husband. I need you to know how many people came up to me during the reception to tell me how much they've heard about you, how special you are to Jillian, and how wonderful it was to finally meet you.
You are so loved buddy.

I want him to know that every time he repeated his fairy tales to me, to his therapists, that I know he was trying to say so much more but couldn't. I know you were trying to express love, happiness, and find any way you could to relate to other humans.
You just wanted to connect with others.

I want you to know how many people's lives you have touched. You may never know it or vocally be able to express your knowledge of the gift you have, but you need to know how magical you are.
You make everyone happy, you make people appreciate the simple things in life, you make people better.
I have had a handful of people tell me those exact words. "Kannon has made me better..."

What a gift you are buddy.
Know this.
Throw away all those papers, tests, evaluations, goals...you don't need any of them.

None of those matter.
They never have.
They were a technicality that had to be done to get you help...that's it.

You are more than all of it.
I love you and your sister so much.
I only did what I thought was best every day.
Unfortunately that included meetings, paperwork, and evaluations.

I just wanted you to know that at the end of the day you always danced, in fact you skipped...literally everywhere you would skip. You were always smiling and you were happy.

You made me better buddy. You made those around you better, and if not better you always made people smile. Your efforts in life are astounding. No one knows better than me how hard you have had to fight every single day for the simple things. Not only did you fight, but you managed to stay happy and dance through it all.

Don't ever forget that.
I hope you never stop dancing...even on days like today.

Happy IEP day.
peace.

A tribute to 2014. A tribute to Void.

Void:
Containing no matter; empty. 
A vacuum.
To leave; vacate.

We all have voids in our lives. 
In our minds, our hearts, our perception of who we are. I'm clearly no expert, but what I have learned through trial and error over the years is that this is what tests our human spirit for growth.
To be very raw, here is the truth:

Year 2006: My marriage had started to fall apart. My son was showing signs of abnormal behaviors, my father was dying a slow death that had already started a few years prior.
Year 2007: My father died. I separated from my husband, my son was diagnosed with a brain disorder...still not clear what, but it was an initial diagnosis of what was to come. I moved out of my home and took my kids with me. No money. No clue. No family nearby to help.
Year 2008: My Grandmother died. My Grandfather died. My divorce was pending. My son was falling deeper into whatever it was that was going on in his brain. I was having a nervous breakdown. Legitimately lost my sense of who I was, what I needed, and why I was alive. 

I never hurt so much as I did after all these things happened. It was literally like a snowball effect of one thing after another...after another. It was an absolute mind fuck and life changer. 

When we "grow up" we rely so much on our past to be lessons of who to be, how to act. We look to those who raised us as a guide, as our lights to our dark times in life. I was clearly lost. I had no path. I had no light. Even though I was a mother, it didn't matter. I was still in my mind grieving. I started allowing the voids to consume me.
I lost all trust in me. I let go of any sense of reality and created my own. Using alcohol, no sleep, and emotional torture, I wrecked through the next 2 years of my life. It was ugly. Very, very ugly. 
I had no family physically here to rely on. I had 2 kids who were depending on me. I had no job, no time, and no desire to make myself better. 
I lied to those I loved. I believed my own lies to fill those voids. I created more pain to fill the pain I was already in. For whatever sadistic reason, pain felt good. It was the only thing I went back to every single day. More pain to fill the voids of the pain I was already in.

Now to the sane person this sounds ridiculous. It sounds pathetic, stupid, and self righteous. 
And, it was.

I can say that now without shame. Without regret. Without feeling ridiculous. 
I, the normally calm, rational, and quiet person saw the other side of my reality. 
I saw the potential of the human spirit and mind when it is pushed beyond it's own perceived abilities.

I only saw, felt, and acknowledged the voids.
I was empty.
Every day literally was a vacuum sucking the life and light out of me and instead of seeing that reality, I craved the pain of it. I wanted to feel emptier than I already was. 

I seek no pity, or validation. I only want to share my ugly truths in hopes it can help others who may be going through their own private pain and voids. If we cannot share truths like these, there will never be human growth or connection. I believe that with every fiber of me.
I now know that without truth, no matter how uncomfortable or non flattering it is will free your ability to move forward. You will push through anything in life, as long as you are honest with yourself and those you love.

I hope to share my experience with this so that others may choose a different path...and if they don't, I want them to know they aren't crazy, or weird for feeling like this.
The struggles may be different, but pain is pain. Void is Void. 
It all affects our daily existence and future. 

I, thank god made it out. I am a work in progress and this is one of the reasons I write...god knows if anyone actually reads any of this, but it doesn't matter. It is part of my journey and I hope someday my kids will read this and laugh, cry, cringe, etc...but at least they will know I was just a person. Not a super hero. Not made of steel. I bend, I break, and I found myself to be resilient. I was just doing my best every single day. I want them to know that their love and existence saved me. Some days were clear and much easier than others, but I kept pushing forward because of them.
I can honestly say today I am one of the luckiest gals around. I love my friends, family, and life SO much. It's not a  perfect life...but it is one built on a real foundation. A foundation of truths, lessons and perception that can only be gained through void.
Yes there were bridges that had to be rebuilt, and apologies that had to be made, personal acceptance to evolve, but eventually it all happened.
I have the best friends. The best sister. The best mom. The best KyKy. The best kids, all of them are my life savers.

I may not have my dad, or my grandparents or the son I thought I would. I may not have as much money as I may like. I may have a shit load of "good god whys"...BUT I know inherently that I am exactly where I need to be today. I went through what I did for a reason. I have the people in my life today for a reason. I have 2 beautiful kids that will grow up to be whatever it is they were destined to be. I have no control over that.

Once I learned that I have no control, but I do have choice, life became very clear and very beautiful...
The lessons came flowing and my heart took a deep breath. 

I may never see my son get married or have a family. I may never have a daughter that doesn't worry about everything. I may never find my happily ever after.
And that is o.k. Today, I can say that with a smile on my face and contentment in my heart. I don't panic when my reality is in my way. It is not a perceived reality anymore either, but one that is allowing me to learn, move forward, and make better choices.

What I do know is that there are monsters in life, there are castles, and there are journeys to be taken.

I wish that you take them all with an open heart. 
You will learn.
You will fill those voids in your heart and mind.

Voids can be a blessing. A necessary. A gift. 

I wish everyone a blessed 2015.
Make it awesome, and I hope if you do have any voids you choose to fill them with love...with light...with friends and family.
No matter how big or small your family or circle of friends is, the ones who are still standing by your side after the storm are the ones who matter. They will be your light during the dark times.

P.S. The world lost a beautiful light and life this year. Leslie was one of a kind. A truly happy soul that had life figured out. She already knew all these life lessons without doubt. I will honor you every day with sunshine and reminding myself to "Be Happy".
Love you Mel. Fill your voids with love...and some wine and cheese...she would want it that way :)

peace.

An open letter

Yesterday Kannon and I went to the pool.
There was a neighborhood "guy" there whom we see walking around the neighborhood often, and he is at the pool all the time. To spare the long drawn out details of what led up to things I will cut to the point. This guy ends up calling Kannon stupid and then proceeded to hit him on the head with his boogie board while laughing...then as we left the pool as a result of this guys behavior he continued to call Kannon chubby and stupid as we walked out.
This is the third "incident" in months that Kannon was physically and verbally harassed at the pool.
A month ago a group of boys thought it would be funny to wrestle Kannon in the water while kicking him in the male parts and calling him fat and stupid.
I will spare my actions/words that resulted in these incidents. Point being, this is about Kannon and his responses to these incidents rather than my mamma bear going all bananas on these people.

Kannon suffers indignities like this often.
Unfortunate and sad, but it is truth. It is the reality that is out there and some people go through without any fault of their own. They suffer at the actions/words of others because they are misunderstood, different, or misjudged.

Do I like seeing my son go through these things? Is it wrong of me to act out on these people when I feel saying so would be hypocritical of me? My simple answer is No. My son has Autism. He is different. He cannot speak for himself and he doesn't have the emotional capacity to understand  bullying or why some people can just be assholes. He only sees good, even when it is bad. He finds the good in every situation. I on the other hand believe in accountability for ones actions...but that's another story.

What Kannon has taught me is to stop feeling victimized. He never once has acted as the victim. As mean as kids have been to him, as awful as it made my heart feel watching him being treated like this, he always walked away with love. Always. He forgave first, never pointed fingers or looked for blame.
He finds the bigger truth always. He has showed me to find truth before judgement, blame, or name calling.

Kannon always walks away from these situations with his head held high, even when he was in pain. Maybe it is the Autism, but he never let that pain overcome his truth. When there were tears from the physical pain, his emotions were always that of gratitude towards these bullies for taking time out to play with him. Some people will feel pity for that. I feel honored to see humanity at its best.
He is only human and he does feel pain, but he never plays the victim or pity card. He never places blame or name calls, even when he is being called the harshest of them. He rises above his own pain and finds his happiness is worth more than anything.
His happiness is worth more than anything.

As a mother I find it very hard to find my balance within these situations. I look to Kannon ironically for help. He always makes it easier to find peace. He never wants to make someone else feel bad. He forgives immediately, and I know if it weren't for me he would give them a second chance. As a mother I cannot, or will not emotionally allow him to walk right back into that situation. I used to in the past as I am a believer in second chances, but not when his well being is at stake. I have learned from the years of indignities he has gone through when to call it quits. I also know from experience that people who treat others poorly out of their own pain are never going to change.
So, we both walk away. No one being the victor, just knowing that sometimes walking away from certain situations and people is always the best decision....no matter who is right or wrong. No matter what the past held or relationship may have been.

Life is too short to put up with assholes.
The sad part is that people who are the assholes don't know it. They feel entitled to call themselves the victim. They feel they are in some position to make others feel blame or shame. They feel that in this world full of pain, wrongs, and judgement that they are the only ones in their story who suffered.
Eew. No thanks.
Some things just can't be forgiven...but that doesn't mean you have to carry it around with you. Let it go without blame, walk away and choose happiness.

And, if you see someone hit your kid over the head with a boogie board restrain your desires to punch them in the face...otherwise this would all be hypocritical rambling.

;)

Let's Not take ourselves seriously. Seriously.

What the future holds is obviously complete speculation.
I will stand up and say that I hope for great things, great hurdles overcome and I hope overall to be surprised.
I find myself on a day to day basis being surprised by Kannon and his advances in life. He clearly is fighting a bigger battle than I could ever create or imagine in my clouded mind.  He is a true warrior of a class beyond my creation.
His clarity and fight for being better is sometimes overwhelming. I find myself at times ignoring his speedy human advances in life...why? I have no clue. Maybe because having a kid with Autism is a minute to minute experience. Sometimes moments need to be reflected on at at later time....If I can catch up with his life intentions.

I was watching the movie "There's Something About Mary" tonight and I found myself laughing out loud at the character Warren. I have seen this movie at least 5 times before and always knew deep down that Warren's character has Autism without them coming out and saying it. The physical ticks, the repetitive behavior, etc...it's Autism.
Anyways, not until tonight for whatever reason was I able to laugh out loud at his character. Even in the quiet of my own home...the mother of an Autistic child, I still couldn't let go and just laugh.
Well to be honest, Autism just isn't funny. Especially if you've lived with it for as long as I have.
BUT, to be able to find the humor in the honesty of it was what got to me tonight. For whatever reason I could laugh at the beautiful, pure, honesty of what it looks like from the outside.
Clearly I know what goes on behind closed doors. The therapy, the words of wisdom/hurt, the daily grind of Autism...It's just not that funny on most days.
But the overall beauty in being able to find pureness in my son's condition through a silly movie was wonderful. After all, the one thing in life I find the most healing is laughter. It is just my thing.

Autism isn't funny...I mean come on. Those of you who live it everyday know this to your core.
But the raw beauty and literal undertones can be. The black and white of it. The no Bullshit thing.

I am just glad I still had it in me to find that and to be in the moment without hesitation or guilt.

Clearly I am still growing, and growing WITH Autism.

Yeah for me :)

peace.

The puzzle with missing pieces...

Kannon never ceases to amaze my mind with his words of insight.
As ironic as this is, since most of you know he has a great deficit in the language department.

With tomorrow being Autism Awareness day I had to share this story.
I share it in hopes it will bring a smile to your heart, a glimpse into Kannon's life, and a greater compassion to those living with Autism.

Kannon loves puzzles. He always has. I remember one of the first times he saw one out of it's box all spread out on our table…his eyes scavenging as his mind was racing to put it all together.
It was great to watch it all unfold.
Being that the chosen symbol so to speak for Autism is a puzzle piece, I thought this story was perfect to share for Autism Awareness.

The other day Kannon was in his room and for whatever reason on this day he decided to work on a puzzle he had got as a gift last year for his birthday.
It's a 500 piece puzzle, so pretty decent size for a little dude…
He had a few pieces put together here and there and I left him to his project.
I came back to check in about 30 minutes later and he had about half the puzzle done. There were pieces missing within bigger parts of the puzzle and he was sitting there with one piece in his hand leaning back against the wall staring up at the ceiling.

"Kannon are you alright buddy…you taking a break from the puzzle?"

"Mommy, it will all go together…it will all fit together…I just need a break…head hurts"

He sat there for another 5 minutes or so just dazed. Sitting with this piece on his hand his head against the wall and not a care in the world.
Finally he sat up, looked at the puzzle got up and put the piece he had in his hand aside next to his books.

"Mommy, this one is special…this needs time…"

"Time? Do you want me to help you?"

"No. I don't need help. It will all fit later…in time"

Then off he went into the living room, poured himself a glass of water, put his feet up and watched tv.

I checked on that puzzle piece over the next few days. It sat in the same place for 3 days. Puzzle untouched but still laid out on the table.
On the 4th day he went back to it. He sat down looked at the puzzle for a bit, got up and got the puzzle piece and without flinching put it with another lone piece on the table.

"See mommy it's fine…it's o.k."

He got up and left the puzzle again, seeming satisfied with his one piece fitting for that day.

I believe overall he left the puzzle out for about a week and would go back to it here and there.
He finished about 75% of it, then one day just put it all back in the box and cleaned up the table.

I asked him why he didn't finish the puzzle…
He said this,

"It didn't need finished…it needed time…don't worry momma it will put itself together."

Seriously.

The amount of metaphors in that last sentence alone are astounding.
Coming from a boy who had to learn every single skill he has today through hundreds of hours of therapy, endless days, weeks of struggles for his own words to come out to express his simplest of needs…and that comes out.

It will all put itself together, and that is the bigger picture here.
My life so far has thrown me out of any mainstream thought, action, or routine that only those who live with Autism can understand. It isolates you, turns you inside out and exposes the ugliest, rawest of truths. Most of these truths take time to accept, if at all.
I know I have made many mistakes along my journey, but I also know the hurdles I have overcome because of my love for my son. The love that gets you through the times that if you had to watch someone else go through would make you cringe, cry and maybe even look away out of fear.

I want to personally express my respect, love, and support to all families who live daily with Autism.
Who have gone through the heartbreak of grasping for your child daily when they are right there in front of you…when at the end of the day all your heart would need to hear is "I love you" yet you know you aren't going to hear it.
It really is all about these kids who have to live with this disorder every minute of every day…but it is the parents love, strength, and bravery that I want to shine a light on.
Without you, without us fighting for our kids there will never be a good day for them.
Without our ability to wake up every morning knowing what the day is going to bring and being able to take a deep breathe, put on your bravest face and get up to stand next to your child, no one else will.
The constant worry, pain and ache of all the unknowns…the financial burden and stresses...
It all takes a toll on the soul, on relationships of all kinds, on your overall health.

What I am trying to say is that we all have a puzzle to put together…our life.
Our life essentially is just one big puzzle. Piece by piece we put it together, some pieces fit easily and make sense to your mind and senses right away…while others may take longer to fit. Yin to the Yang.
That is how I have to approach my life at times. If something doesn't fit or feel right, I hold onto it for awhile and come back to it…think on it. Sometimes I put it down, walk away from it and eventually I will have to come back to it for my sanity and for my overall puzzle to go together.
Most times we won't see the bigger picture yet, of why all these pieces go together. The important thing to remember is that they are coming together for a bigger purpose…and in it's own beautiful time it will come together.

Just as I said earlier I want to shine a light on those who live daily with Autism, who have pieces of their puzzles in their hands every day and grasp onto them for dear life sometimes forcing them to fit out of frustration and love…and I want them to know that's o.k. We all do it. We all want more than anything for our lives to come together in some beautiful mosaic or puzzle, piecing it together in our own way and time.
But that's the bitch of Autism.
It doesn't really give you that control or option sometimes.

So to those parents who surrender their pieces to the greater fight, to the beings unknown…I honor your love and strength.
It is truly a gift to sometimes not have all the pieces fit, and to just hold onto them a little longer than you may like or feel comfortable doing.
That is the gift.

I hope this brings awareness to anyone who chooses to open their minds and hearts to families living with Autism.
They are building some truly beautiful puzzles that deserve time.

peace.

The power of paper.

Kannon had a victory in the past few months.
He underwent his series of tri-annual testing through the school district and last week we sat down with his Educational team and discussed the results.

I want to first address the power, or supposed power of a piece of paper…and what is written on that paper.
Whether it be a study, results of test, a letter, a bill, etc…it is all just words.
No matter what people may think are behind those concrete words, they are just that.
Just as I write, people can dismiss what they read immediately without any thought and move on.
Or they can take what they read to heart and believe what they read is truth.

It is tough to see your child "on paper".
His supposed intelligence, his years of hard work in black and white.
I have found through my personal experience with "papers" that at the end of the day it doesn't mean a damn thing.
It doesn't give an accurate assessment of either parties involved and it never really says what it is trying to.
There is always more.
Always.

Kannon is so much more than what those papers said of him.
He is much more beautiful, intelligent, focused, and present.
He is not what they perceived him to be, no matter what tests were given.

I used to put a lot of power in the paper…
Now I know better.
I know that the real truth lies in actions, everyday life, and honest assessments that one goes through daily both with themselves and those involved in their life.
I have seen too many times when words on paper affected people when in truth there is no validity to the content.
No one likes to feel inferior or judged, especially when it is so easily done through words on paper.

As a parent sometimes paper is all we have to judge where our child is at compared to their peer group.
I get a pile of papers each week sent home to me for both my kids. I find myself most of the time throwing out most of it.
Paper has lost its power.


As I said in the beginning though…a victory for Kannon!
3 years ago he could not even test. He was unable to sit still, answer any questions or understand what they were even wanting out of him. His numbers "on paper" were catastrophic.
0.01% was a common number I saw in relation to his percentile scoring…
"Well below average"…"Severely low"…all common words I saw over and over again.
In fact in those papers was even notes about how "his mother was in tears" due to the hours of frustrating tests without any positive outcome(s).
Awesome. I made the papers too ;)

But this time, this time around he was not only able to be tested, but he got through all the tests!
He was able to sit still for the hour and a half 3 times a week for months and be asked all these questions without falling to pieces or crying out of frustration.
He did it.
The real victory is that he was able to test, not what the results were…
He was able to sit through the questions and pictures and charts. He tried his hardest and did what he could with all the standardized BS that these tests run him through.

I couldn't be prouder.
He withstood the time, the pressure, and the frustration and was able to overcome in my opinion whatever was on that piece of paper.
Whatever outcome or result that was written on those papers didn't matter at all.
I have become tired of reading papers on Kannon about how "behind" or "below average" he is...

The years of sacrifice, hard work, and grit have outweighed any words or numbers.

His teacher came up to me after our meeting and told me what an honor it's been to work with Kannon. She said what a joy it is to see him every day and to see all he has overcome.
She said that kids ask about him all the time when he's absent, wanting to know if he's ok and when he will be back. He even has a group of boys from his mainstream class that play basketball with him at recess every day now…he told me he has friends he plays with now. He has friends :)
She also said that there are few people she has come across in her life that make her want to be a better person…and that Kannon was one of those people. That she can't help but want to be better and work harder because of him.
Wow.

Great job buddy.
Not only did you overcome adversity, tests, perceived realities and stereotypes, you came blazing through that finish line shining brighter than anyone could ever write about on paper.
You even managed to inspire those around you. People who were there to help you came out learning from you.

My heart is full of pride.
Maybe I helped you out a bit in all of this, I don't know.
I don't care.
All I care about is you overcoming that stupid piece of paper.
I hope more people will learn that anything that is written about them is pure speculation.
Truth or not, don't let it define you or affect your truth.

If you know yourself, really know yourself, not what others think they know about you or write about you…none of that matters in the scheme of your life path. Words or numbers should not break ones heart or spirit…ever.
What matters is results, and the majority of opinions and truths around your everyday life.

Kannon continues to overcome and inspire me with his actions and his sense of self.
He could never be swayed to believe he is anything other than what he knows he is. He draws it out every day, ironically on paper.
Castles, happy every afters, smiles, sunshine, people holding hands, friends, kind words...

His truth.
:)

Happy 2014. Let's reflect a bit ;)

If there's ever a time to share stories of compassion, kindness, and hope it's now.
Cliche? Maybe a little, but we all need inspiration and damn it feels good to feel your insides all warm and fuzzy.
So on that note I wanted to share a few of my favorite memories this past year with my kids, my journey with Autism, my life, my lessons…

1. It was summer time, and I hate to admit why I remember why but let's just say that some people smell better than others when in the hot California sun all day. The kids and I pulled up to our favorite Circle K stop and outside there was a homeless man sitting with all his bags begging for change. Kannon immediately noticed him and walked right up to him and said "hello, why do you look so sad?" I pulled Kannon inside the store and into the soda aisle. Kannon just could not shake it off though. He pulled back and looked out the front window at the man and just watched for a few minutes. After Kalena and I got our drinks I asked Kannon if he wanted to get anything. He walked to the back of the store and after about 3 minutes appeared with an armful of everything. Water, Coke, Gatorade, Top Ramen, Chef Boy R De ravioli, Sour Patch Kids, Doritos and to finish it off a silk rose…you know those cheesy random things only gas stations or Circle K's have for that late, late night purchase.
Anyways, I obviously asked what the heck all this was and to put it back. He shook his head so quickly and said to me "NO mamma, this is for the sad man."
How could I ever dispute such compassion?
So as we left the store Kannon proudly walked right up to the homeless man, gave him the plastic bag full of goodies and then ever so carefully pulled out the rose last and said, "Don't be sad, it's ok…thank you...have a nice day."
I love that he told the man thank you. The man was truly set off guard and said thank you to Kannon. He also smiled at Kannon…and that was all Kannon wanted. His face lit up after that and all was well again as far as Kannon was concerned. My little Buddha.

On a side note, I italicized earlier the words  begging for change, because after we got in the car Kalena asked what that man was doing outside like that. I told her he was asking people for help and for change to help him out.
Her innocent, beautiful response was: "Only he can change his life mom…"

2. One afternoon Kannon and I were watching television and a commercial came on that was advertising some organization that helped children who had different diseases. It showed images of sickly, bald children in wheelchairs and in bed. It truly was heartbreaking. Kannon was just so engaged by the images and he did not budge or blink the entire time. I just sat behind him on the couch watching.
After the segment was over he turned to me and said "They have hurt huh momma?"
Me: "Yes buddy they are sick kiddos that need doctors and medicine."
Kannon: "Oh no, that's so sad…but they are so beautiful…beautiful princesses…it's o.k…they will find their home, they will find the castle in the sky…"

This was a time when I just teared up immediately and smiled at Kannon.
His ability to see beauty in people, nature, LIFE, no matter what the circumstances may be is…ironic and wonderful. It brings me to tears every damn time.


3. I have already spoke of this in a previous post, but wanted to share again because of the underlying lesson.
Kannon and I were at the park and he found a group of boys who were playing chase and he joined in without their permission or invite, but Kannon never seems to care about that…he sees fun and he wants in :)
After chase the boys settled into the sand box area and Kannon started to try engaging them in his version of "conversation", which bless his heart can be very broken and not clear at all.
This is the moment when ALL kids realize something isn't "normal" about him and they either walk away or some will stay and continue to play with Kannon…he can be quite infectious.
Anyways, these boys stuck around for about 10 minutes and I stayed my distance to allow things to play out as I didn't see any reason to intervene yet.
Well I was wrong.
As Kannon sat smiling and laughing in the sand the boys stood up dumped a bucket full of sand on Kannon's head while calling him a retard, laughed at him and ran off…laughing and yelling "retard."
Kannon shook his head of sand, turned to the laughing boys, waved and yelled "thank you for playing with me boys…thank you for being my friend..."

All I could do at that moment is take a deep breath, suck it up and walk over to my sandy baby boy...

My heart broke for him…and he had no idea any pain was necessary at all.
This is what I am grateful for.
Whether it is ignorance, misunderstanding, or pure choice…he rises above and finds peace.
He really does. 98% of every life moment he finds happiness, laughter, fun, acceptance.
It is amazing.
It is inspiring.


4. This past year Kannon's best friend moved away.
Now she is not your typical best friend of a 9 year old boy, but Kannon is not your typical boy either. She was one of his therapists that worked with him almost every day for 5 years straight. She always had his back, always made him feel good about himself, and never once let him down.
He suffered a huge loss when she moved. I wanted to say a devastating loss…but Kannon didn't process it like that.
This is what makes him amazing.

When J moved away, he did for the first time show a great deal of sadness. Sadness that I never knew he had in him…but he was just processing the loss in his own way and time.
If you've ever experienced a loss in your life, you know how it can shake your world to the core.
It can be paralyzing. Devastating. Life changing.

But not for Kannon, he chose to celebrate J after she left. Instead of allowing his sadness to overcome him he went the other way. He put up drawings, notes, colorings they had done together along with his own drawings that made him happy all over his room. He asked if she was "o.k" almost every night before bed and when I said she was, he would smile and go to sleep.
He kept moving forward. He was happy knowing she was happy, he surrounded himself with his memories of her, and he found peace with that.

He chose to take his loss and find peace with it, celebrate the time he had with her, and never forget those memories…at the tender age of 9.
Man I wish I had known how to deal with loss like this years ago.
Sure would've saved a lot of heartache.
He however just instinctively knew what to do.


I wish more than anything I could somehow make everyone reading this feel what I feel when I watch my son go through his life everyday.
Not because it is more than anyone's journey. Only because of all it has given me…I wish it could give back to others too.

All his hard work, dedication to self, kindness, and compassion towards every person he meets in life…
It is beyond my grasp at times. At times it truly brings my head out of my mind and back in my heart where it belongs.

I wish for all of you a magical New Year.
I hope you find peace with life, with others, and mostly with yourself.
To find acceptance in your everyday existence and all that comes to you can be very eye opening.
It can bring a great deal of calm and joy to your heart.

Forgive others, even if they aren't sorry.
Find the beauty in all things thrown your way.
Say hello to strangers, hell even smile at them.
Stop and smell the roses.
Never ever judge others, you just don't know what journey they may be on.
Live simply so others can simply live.

My favorite would have to be,
“If we could change ourselves, the tendencies in the world would also change. As a man changes his own nature, so does the attitude of the world change towards him. … We need not wait to see what others do.”-Gandhi

Happy 2014!

and, peace :)

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 :)

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?
NO.
Do I miss you while you sleep at night?
NO.

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

Wow.
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 :)

Irony never gives you an answer.

Life is full of irony.

Joy...then pain.
Hopelessness...then answers.
Fear...then calm.
Love...then, well all of the above.

The other day after I dropped Kannon off at summer camp, which let me start off by saying was completely my idea for him to go.
My "idea" because it was an opportunity for Kannon to be around typical peers. To socialize with them and learn from their example. To hopefully place him slightly out of his comfort zone and push that Autism bubble enough so that it would touch his head and heart, yet not hard enough that it would burst...

As a mother to a child of Autism these decisions are always crap shoots at best.
We roll the dice with our hearts, and sometimes our heads...but we always say a prayer, take a big breath in and roll the dice.
We always have to let go.
Hoping that our gambles will pay off, for the best of our children.
Every time betting against the odds that maybe this time it will maybe make this Autism thing a little bit better...even if for a day.

Anyways, like I was saying I dropped Kannon off at camp the other day while they were outside having their playtime.
I did this on purpose because I wanted to observe for a bit...I wanted to know why Kannon did not want to go to camp, why every morning he dreaded the drive to go there.
I wanted to know if my crap shoot was paying off in any way.

I watched as Kannon walked from one group of kids to the next, to the next, to the next...

He would walk over, say something and move around smiling trying to engage at least someone from the group. Yet every time he was ignored or looked at for a second then they would go back to their group without any efforts to include him.
He did this for 19 minutes, yes I timed it...then he just walked off into the grass field by himself and sat down.
He sat alone for a few minutes just watching the other kids.
Then he started feeling the grass with his fingertips...grazing the palms of his hands over the tops of the blades over and over again.
He started singing to himself and raised his face up to the sky, closed his eyes and just sang...

I stood there and just watched.
I shook my head at first and wanted more than anything to just take him home...take him back to his world where he was happy and not alone.
But he just sat there soaking it all in.
The sun, the grass, his song...and he was smiling.

One of the hardest things about being Kannon's mother is not knowing what he really understands.
What he really takes in or lets into his heart.
I never really know what hurts him, how he feels about things, and if he understands the emotions attached to what his gut is feeling...

Some may think I am a dreamer myself...too emotionally driven.
Maybe it is my way of "dealing" with the hand I have been given with Kannon.
With all the hurdles we have to go over together every single day.
No matter how small they may be, there are every day hurdles to go over.
Hell most days I feel as if Kannon is the one gracefully leaping over them while I am hurling myself over with the grace of an elephant. ( no offense to elephants... )

Maybe Kannon is just getting some sort of sensory input by touching the grass, soaking in the sun, singing to the heavens...
Maybe he is just stimming. (Stimming is almost always a symptom of autism, but it's important to note that stimming is also a part of most people's behavior patterns. If you've ever tapped your pencil, bitten your nails, twirled your hair, or paced, you've engaged in stimming.)

Well to be honest with myself and whoever reads this, I have to think it is more than that...more than Autism.
I have to believe that in his own way he is "rolling the dice" and doing what makes his heart happy.
Doing what he thinks is best for him at that very moment...and not just some stupid brain itch that needs to be tended to in order to calm his nervous system.

So, after standing there watching Kannon for about 35 minutes I walked away.
I walked to my car, got in, put my face in my hands and just cried...here was my first hurdle of the day.
I don't care how many times I see him getting rejected by peers, it never gets any easier. It never gets easier to watch him play by himself more times than not, even if I understand why it is happening.  No mother likes to see that.

He never had any social interactions, no peer modeling to learn from...not one interaction with another child.
He sat in a field, played with the grass and sang songs to himself while swaying back and forth to his own rhythm of happiness.
More notable though, he was smiling most of the time. Smiling and singing.
This was Kannon's hurdle...now you see how the elephant metaphor applies to myself in contrast to him.
Me in my car crying, he in a field of green grass singing.

Tomorrow, next week, next month I will have to continue to "roll the dice" in hopes of helping him.
Ironic, since he seems to be the one helping me in my life situations.

Days like this do not make it easy.
Some answers/clarification would be great, says every mother of an Autistic child...
Enough said.

peace.

A swift kick to the...

Some days I just want to kick Autism in the balls.
Excuse the classy choice of words, but it's true.

Whenever I walk into a room filled with kids playing, laughing, sitting in groups socializing and there in the back I see Kannon sitting by himself at a table with paper drawing his fairy tale creations...

Whenever I drop him off at school, or take him to a playground and watch him walk up to his peers and within a few seconds they walk away. Then watch Kannon walk off and play by himself still smiling...

When I see how beautiful of a soul Kannon came into this world with.

When I watch him cry in frustration because he can't get his point or emotion(s) across.

While every morning I bathe/shower him, brush his teeth and help him get dressed, then looks at me and says "thank you mamma".

When I watch him watch other kids playing with a sparkle in his eyes.

When he was pushed off the top of a playground after trying to play with other kids.

When he happily waved goodbye to a boy who dumped sand on his head and called him "retarded"...then thanked the boy for playing with him.

After sitting up at nights thinking about what will happen to him when I leave. Who will take care of him. Who will love him. Who will he have to love...


Autism is overwhelming.

At times I ignore it, other times I look it dead on and fight.

I believe in making the best of what you are given, no matter the pain it causes.
We are all much stronger than we may know, or want to know...and sometimes you are tested more than you ever wanted to be in life.

There are times in life you have to let go of pain.
You have to move on for the best of your heart.

You have to forgive, but you don't have to forget.

I know my decisions in my life up to today have all been perfect for me.
They may seem selfish, or stupid or even strong.
It doesn't matter how they are perceived.
What matters is that I am doing the right thing for my soul...for my future.

What matters is that I have a son with Autism.
I also have a daughter that is trying to find her way in our family with all she has had to deal with at such a young age...she is doing beautifully.
I have myself who has been broken, built up again and tries every day to find the simple beauties in life.
I have a small support system of family and friends who are everything to me and I make sure they know that.

Big picture, Autism has defined a lot of who I am today...but it has not consumed me. It has never forced me to do anything or made me make bad choices because of the trials it has put met through.
I know who I am, I know who I do not want to be.

I also know who Kannon is.
I hear his heart every single day...as silly as this may sound it is so true when you have a child who cannot properly communicate. You hear them speak in other ways.
I also know who he wants to be, but can't...because of Autism.
I know he looks at himself every day with frustration yet he finds his way into peace.
He has made peace with having Autism, which in turn has made my world that much.....more, no other word came to mind but more.

To be at peace with yourself is a powerful notion...or action.
I find myself questioning actions, words, thoughts all the time.
Overall I am at peace with the big picture, with the person I am today.
I have Kannon to thank for that.

I had someone tell me today that they have been working with kids for the past 5 years almost every day and that Kannon was the sweetest, happiest person they had ever met.

What else would any mother ever want to hear...
I have a happy soul living on this earth.
He has found peace with it all, and better yet he is happy.

So to that testament and to all I stated above...

If I ever meet Autism face to face I will kick it in the balls.

Assuming it has any.


peace.

A love note to my dad...and to Kyle.

It was at my sisters dining room table.
I truly don't remember the date or year, but what matters is that my father was at the very cusp of his journey with Alzheimer's disease.
He knew it was coming. He was still in good mind that he saw the signs of what was to come.
He lost his mother to the disease and he knew....he knew Alzheimer's would eventually take his own life.

We had sat down together at the table just the two of us and talked for hours. Sadly I can't remember specifically all we talked about, but I know my heart will never forget a few of those things we did talk of.

For today, for this particular post I wanted to bring up one thing I do remember him saying very vividly.
He said he was sorry.
He apologized for what was about to come for our family, because he knew he had Alzheimer's.
He knew the pain, the emotional toll that would result of him having this disease.

Not only was he sorry for the disease that was consuming him, but he was sorry because he was a father.
He was a father, a husband, a brother, and a friend.
He knew the pain he was going to inflict, without his control and without his intent.


I never until now realized how incredibly painful all of this had to have been on my father.
I only knew how it felt for myself.
I never once thought about how hard it must have been for him to realize all of this, process the possibilities, and accept it without fail.
I was too selfish in my own grief that I never thought about his role as a father to have to say goodbye to his children...his wife...his friends...
This is the pain of life.
This is the raw truth of love.

Now that I am a parent, I understand.
I know how hard it must have been to digest all of this.
To realize you must leave your children...to leave them alone without being able to have a future with them.
To experience life with them.
To be a parent.

He had to leave.
He knew it was inevitable and he apologized.

Had I known the depth of this apology at the time I probably would have never been able to physically stand on my own feet and say goodbye to him.
I would have collapsed from the pain.

This is the love of a father.
Of a parent.

Happy Father's Day to all you dads out there that love with no walls.
To those of you who aren't afraid of showing your souls.
To those who allow pain, truth, and love be what matters above all else.


After my father died my life was turned upside down and only a select few truly saw the ugly repercussions of it all.
I was damaged.
I was beyond hurt, I was completely empty and truly worthless.
To admit this is very sad for me, but it is the truth.
It is a truth I accept now, and will never forget as a learning tool for my life to come.

It never fails in life that where there is pain and suffering, there is always light.
There is always something worth living for.

We tend to seek out what is missing in our lives in times of heartache and confusion.
What our souls crave we start looking for.
We seek the balance in life that we are missing...even if we don't know what it is we need.
We as humans still seek.

I was seeking laughter...light...something to help me forget the raw pain of loosing my father the way I did.
I wanted to remember laughter.
I wanted to feel the sheer delight of looking at someone/something with complete trust and to just laugh. To truly feel the innocence of being a child again.
To feel safe in my skin and to have someone to talk to again the way I could with my dad.

Enter Kyle.
The joy to my pain.
The person my soul was seeking to help ease the pain I was feeling.

We had known each other for years. We were always friends. I always loved him as a person.
He was kind, honest, and above all he always made me laugh.
Whenever I was around him I felt light...I felt innocently happy.
I wish for him people could truly understand all he has done for me, and for my kids.
I know my dad was watching over somehow, I know he brought Kyle back in my life for a reason.

People are brought into your life for reasons.
No matter the timing or circumstances they are there for a reason.

On the opposite end of that rainbow people also leave your life.
They leave for reasons we may never understand.

I now know the pain and reality of why my father would never want to leave me.
I never thought of it from his side.
Pain and loss can make a person selfish.
However, if you think about it from the other perspective it brings a new light to things.
It makes you a better, more balanced soul.

My father apologized that day at my sisters for having to leave me.
He knew he would never watch me be a mother.
He would never have the joy of being a grandparent.
He knew he was going to leave me before he wanted to.

I was lucky.
I had a father who I loved more than anything.
A father who was not too proud to show his soul.
One whom loved beyond boundaries and was never afraid to tell me how he felt.
One who loved me enough to tell me he was sorry. To tell me in advance to prepare for the inevitable...
I was lucky.

I am still lucky.
I was given a best friend out of all of this.
I was given the gift of laughter again.
I was shown how to love as a parent, as a person, and as a friend.

Man, woman, child, no matter...
Love is love.
If you love someone tell them.
No matter what the situation or circumstances.
Love will save a soul.
Honesty will save a soul, no matter how humbling.
I promise you that.

Thank you Dad.

Thank you Kyle.

Out of all the pain, the trials, the moments of loss.
I came out a better person because of your love.

Thank you to all you amazing father's, friends, humans out there.
You are truly doing life changing work.

Happy Fathers Day.

peace.

love gets me through. writing gets me through. until then...

When the day comes that I am introduced to Kannon I will be ready.

I will always remember when it hit me that I may never know him.
Never know his dreams, his future, his potential...
It was the day he was diagnosed with Autism.
Realistically I knew he had Autism, but until I paid a professional to evaluate him, test him, and write a 20 page report on him which included his clinical diagnosis I just didn't want to believe it.
It truly is humbling when you see something on paper, in black and white.
It literally brought me to my knees...in my driveway on a beautiful sunny day.

The spirit and love a parent encompasses for their child is nothing short of painful.
A pain so deep, so profound, and so pure that without it one would just feel empty.
It is a beautiful, wonderful pain...but it still hurts.

As a parent to a child with Autism the moment I found out Kannon's future my heart felt an entire new pain that I couldn't understand in the beginning, and am still exploring today.

The best I can make of it is the feeling of not knowing, understanding or controlling anything your heart feels from moment to moment.
You know how you should feel, yet you react an entire different way.
Rationale, reason and logic go out the window...there is no such thing in relation to loving a child with Autism.
One minute I can feel loss, the next hope...Peace, then anger.
Your heart is constantly counter balancing itself, out of surviving the pain you feel deep down.
I had a friend once tell me I was in survival mode. A very obvious outside observation, and one that at times is necessary to get through a day that I can have.
The thing with Autism is that some days you just have to get through it...you have to numb yourself out, because if you really sit in it for too long you will drown. You will get overwhelmed by the emotions, the reality, the rawness of life that is thrown in your face compliments of the disorder.

You have to sit there and watch your child struggle.
You have to observe the behaviors, the physical turmoil, the emotions lurking behind their beautiful faces.
Sometimes you just want to shake them. Shake them until they break out of this body they have no control over.
You just want to meet your child. Know who they really are behind ALL of this. Know why they can't just open their mouth and talk to us. You want to feel connected to this beautiful person you created.
Again, the rationale is one of non existence in the real world...it just doesn't make a dent.

As a continuum, the one emotion I have never felt is completion.
I may never feel this with Kannon.
I may never have the chance to sit down with him and hear him...really hear him.
Hear his fears, his thoughts, his sense of humor...why he does the things he does.
I may never formally be introduced to Kannon.
I may never get to hear his true voice.

That kind of pain is one I cannot wrap my head around or put words to.
It just is. It is my every day.
I suppose the take one day at a time mentality is best for this.

It is part of this beautiful pain I spoke of earlier.
The love, the hope, the peace you want to feel every single day...but sometimes just can't.
Sometimes the counter point to what we want in our lives may never evolve.

In spite of it all, I still hope every day I will be able to one day sit next to Kannon and talk about it all.
To hear his experiences in his own words...and that will be the day I stop writing.
I write to hear his voice in my heart.
It is my way of balancing out the pain...

I write to hear his voice in my heart.

hope.ful.

peace.

the car ride

As parents we all try to protect our children from pain.
We know pain as adults, and we know just how hard it can be at times to overcome pain.
Some never recover from painful moments in life, and I think this is what scares me as a parent...I never want my children to harbor pain and carry it with them forever.

This morning we were driving to school as we always do, pull up to the curb and park, then we sit in the car for a few minutes and talk about what a great day they will have at school learning and playing.
I think it's important to set the mood for the day even if we are all exhausted, grumpy or have a case of the Mondays...
As we sat in the car one of Kalena's classmates walked by and this is when Kalena put her head down and got really quiet.
I kept talking to Kannon knowing that she would either let whatever it was pass or she would say what it was that was on her mind.
She looked up a few minutes later with tears in her eyes and said "Mommy, (I will call this friend of Kalenas "Suzy") Suzy said the other day that Kannon was really weird"...
"She said that I have a weird brother and she didn't want to play with me"

Oh crap.
O.k. obviously this is not a surprise, I knew this would come up now that they go to the same school and have the same recess time.
Her friends would see Kannon and point out their juvenile observations that all kids do.

As we sat in silence for a moment Kannon got very quiet and started looking out the window.
Kalena was wiping away her tears and Kannon looked over at her reached out and grabbed her hand...
"It's o.k Kalena...I'm not weird." "Don't be sad".

We talked more about it until she came to her own conclusion that this was going to happen sometimes, and that all she can do is "stick up for Kannon", and not get her feelings hurt because other people "don't know him like I do".

Exactly.
No one ever really knows what goes on behind the scenes.
No one knows the battles people fight in silence.
No one can ever tell you what is truth, or make you feel bad for things they just don't understand.

Kalena will continue to forgive people in her life for their misunderstandings about her brother.
She will have to grow a thicker skin and lighter conscious.
I think Kannon is pretty lucky to have her as his best friend in this life...the fact that at her age she can cry for someone else is an amazing act of love.

Kannon was very quiet after grabbing Kalenas hand.
He was silent all the way down the hill that we walk every day to his class.
We said goodbye to Kalena as she walked off to her class, then we walked towards the bench to wait for his teacher.
He sat down, still quiet...I just sat next to him and waited.
He had pulled his hood over his head in the car so I couldn't see his face while we walked.
As his teacher came up and his other classmates I leaned in to say goodbye to him.
I pulled his hood down over his head and saw a red, teary eyed boy.
"Oh buddy, what's the matter"
"I'm not weird mamma...I'm a good boy...Kalenas sad because I'm weird."

We walked over to the side and talked for a few minutes until the tears stopped...until he got back on his feet again and was ready to move forward with his day.

Some people have to experience hurdles in life earlier than others, and some fall down more then others.
As a parent it can be very tough to watch and experience...
But what we have to remember is that it's their journey, not ours.
These are their lessons to learn.
Even if we can't use words to talk about feelings, your action of just listening and looking at them while they "talk" to you in their own way is still love.
Watching your child fall down either metaphorically or physically is hard. Sometimes though it can be good to allow them to get up on their own...we can be right next to them without interfering.
All we can do is love them every day with arms and ears wide open just in case they need somewhere to fall.


peace.

"Happy" Autism Day, a love note to my boy

How do I translate pain into love?
How can so many years of pain translate into a beautiful experience?

Autism.

You came into this world with it, and you will leave this world with it.
More importantly, what you have chosen to do with it is something that has changed my heart forever.

You have fought harder than anyone I know for yourself.
You never gave up, and through the struggle and tears you always chose to fight for yourself...you taught me how to fight for myself and my happiness.
I have never seen such a beautiful soul filled with so much love and kindness.
Thank you for showing a jaded self how to find the beauty in life.
You really do believe in happily ever after, in the magic of life...especially when I had given up on it.
You actually do stop to smell the roses and skip while you run...you helped me slow down and live.
You love all interaction with people no matter how brief it is...when usually in the past I would avoid most strangers, I now welcome the small talk.

The ways you have touched my heart and opened my mind are endless...you broke through to a very hurt, very confused soul that needed guidance and love.
You saved me in more ways I can communicate...ironic since I am supposed to be the one who can talk, you talk worlds more than I ever could...in your own language.

Through your energy, your light, and your presence in my life I have no choice but to be better.

I just don't know how to thank you.
So just as I have been trying for the past 9 years, I will continue to try to do better every day.
For you, and for the example you have already set in such a brief time...
I will continue to bring awareness of your life, your struggles, and more importantly your beauty that makes you amazing.
You get enough hardships out there in your playground of life.
I've seen you pushed off a playground, laughed at, get sand thrown at and dumped on, called retarded, stupid, weird...it's all too painful to keep writing, you deserve better.
Yet through it all you came out shining...you still believed in happily ever after.
Simply amazing.

If I didn't know better I would think you had already lived twenty lifetimes, and I was blessed to have you in this one.

So today, and every day I will "Light it up Blue", Red, Orange, Yellow, Green, Indigo and Violet...

Someday others will see your beautiful rainbow as I do.
I know you will keep singing your tune and teaching my soul...

thank you.

peace :)

*Make sure you have the volume turned up before pressing play on the video...

Brief note to self.

If there is anything I try to remember it is to be grateful for what I have today.
Not what I had yesterday, or what I wish I did have...just for what I have in front of me this very moment.
Losing perspective can be very easy to do in times of stress or confusion. I see it happening every day to those around me...and to myself. As blinding as love can be, we must never forget what is the most important thing in life.
Yourself.
Without self we could not be good friends, mothers, fathers, or people.
We must above all else love our self and who we are.

I feel as I get older I never fully took advantage of moments growing up.
I never really knew how lucky I was.
Now that I am older I realize how much I took for granted and why today I take each moment with great care and an open, gracious heart.
I gained perspective and realized the importance of today.

So maybe for today try to realize why you have what you do, and be grateful for it...
For all of it.
Even if it hurts, try to learn from it and be grateful for the lesson.
For without having felt pain I find those people to lack depth and compassion.
Without experiencing pain, overcoming it and moving forward I would not experience my life to the fullest of it's potential.
And for that I am very grateful.

I find myself able to laugh harder, smile bigger and listen with compassion due to all I have today.
What is on my plate right now will make me better, stronger, the person my soul knows it will and should be.

Pain is temporary, and hard times will pass.
It is not what you are given in life that changes you, it is how you choose to handle the situation and how you came out at the end that matters...the end of all things difficult in life will change you.
We can learn from our mistakes.
It is possible for change.

Please remember to love yourself, to believe in today and all that you have.
Believe in change and hope for love.
It is there for a reason.


peace.