If you only knew. You someday will.

If you only knew how proud I am of you.

How you just carry on every moment of every day...most times all by yourself.
Without my aide.
Without my prompting or support...

You just do.

You have excelled in school...
You earned the highest test scores in your class.
You have sat in class in front of your teachers and listened.
You took it in.

The compassion and love for life you show every moment is contagious.
You simply live for each moment...let it go, and move on.
You are simply wonderful.

The way you watch those around you live.

The smile you put upon your own face while watching life.
The hundreds of times you have lit my face up without even knowing it.
You are truly magical.

I find myself feeling guilty every day because I cannot spend enough time with you.
With your imagination...your questions...your energy.

I often watch you sleep.
Sometimes these are the only moments I have to truly just sit with you and feel your being.
Sad.
But the truth...with our life, our schedule...it is truth.

There is not a moment that something inside me tugs at my conscious reminding me that I want so much to spend more time with you...to watch you grow into the person you are becoming.

Most of the time you are becoming this person without me.

Without me.

Like a seed planted in the ground you have grown into a living, thriving being.
You have thrived in your environment without complaint...
You are a survivor.

I could not be more proud of being able to call myself your mother.

I hope someday you read this and understand why we have made the sacrifices we have...
Why we live the life we live every day without complaint or regret.
Why we may not be like other families you see at your school every day.
Why there have been years of testing...therapists...doctors...sleepless nights...uneventful outings...tantrums...bruises...tears.

I know you will understand how much I love you.

I hope you can forgive me for those things you don't/didn't understand.

I will talk to you for hours...days...months if you need when the time comes.
I will talk to you until my last breath if you need to understand why we got to where we are at that moment.

Life is short, and lessons come at you fast.
It is how you react to them that make you who you are.
Life is not something to be taken lightly, yet one should never take themselves too seriously.

There is beauty everywhere.
Thank you for showing me this when my vision was cloudy.
For there were moments when my knees were too weak to stand and your little heart supported us all.

You are, to put it simply...

Beautiful.

Thank you Kalena, my daughter, for choosing me to be your mother.
For choosing this life to live with us...with Kannon and I.
For being my "other" child... my "normal" child...

If you only knew all the things my heart wants to tell you every moment, but sometimes can't.

I hope someday you do.

peace :)

speechless.

Some times I am speechless.
I don't always have the words to communicate with Kannon when he doesn't.
Most of the time I can get my point across to him, and him me.
But today was different...

We went to the park after school to play for a bit before he had therapy.

As always I sit on the bench and off he goes usually to the tire swing first.

Today was no different, tire swing first and then after he noticed a couple of boys running around in the sandbox area off he went to play with them.

I want to say that since starting school last year Kannon's interest and ability to play with his peers has just sky rocketed.
He loves other kids, all sizes and ages.
When he sees "fun" especially chasing around it is like a magnet for him that he cannot resist.

So off he went to the sandbox.
I could still see him but he was a little farther away so I couldn't really hear what was going on.

Within 10 minutes I hear Kannon screaming, in joy, and look over and the bigger boy was dumping a bucket of sand on his head...
I hopped up and saw Kannon's face and since he was clearly enjoying this act for whatever reason, I didn't panic.

I started to walk over just in case, as my alerts are always up.
When I was about 10 feet from the boys is when I heard the boy who was dumping the sand say to the other boy:

"This is what happens to retards."

Kannon just sat there flapping his hands and laughing in joy, since in his mind they were just playing...
Where as I immediately scanned the park for potential parents to "discuss" what I just heard their son say to my son.

I called over to Kannon to come by me, and this is when the boy took the bucket and no joke threw it as hard as he could at Kannon's face.

I wish I was kidding.
I wish as a parent I didn't have to watch such cruel things happen to Kannon more than any child should ever have to experience such actions...such words.
I wished for Kannon that this didn't have to happen to his gentle soul.

It obviously hurt Kannon and along with getting a handful of sand in his eyes he got a plastic bucket in the face...
It hurt him.
He started to cry from the sting of it all.

I ran over to him just as the boys were running off down the trail to their bikes they had left over by the trees and off they went...
No parents, no accountability....they were gone.

I knelt down, brushed the sand from his face and wiped the sandy tears from his cheeks.

Then, what Kannon did next is why I write about him.
It is why he really is so special.

He got up looked at the boys who were off and riding about 50 feet away from us, waved his hand high up in the air and yelled to them:

"Thank you boys for playing sand with me"

He thanked them.
Through his sandy tears...he was still gracious for their time.
His heart knew gratitude over pain.
He knew nothing about the cruelty that was just shown to him, only that these boys were "playing" with him.

Moments like this I am speechless.
I didn't have the words to try to talk this one out with him.
He looked at me wiping his face, tears gone now, and said to me...

"It's o.k mom...no more ouchie"

Still as I sit here and digest all of this I am speechless.

Bless his heart.
He said Thank You.

peace.

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.


peace.

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...

WHY???

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 :)

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:

ech·o·la·li·a

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 :)

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"

Really?
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...

peace.

And you learn...

Goodbyes are never easy.
Whether it's after dropping a friend off at the airport after a visit, loosing your best friend, ending a relationship, or even saying goodbye to a loved one after they have passed away...or some of the above combined.

I have learned really well over the past years how to say goodbye.
I feel as if I have said goodbye to some of the most important people in my life.
The power of goodbye is life changing.
You are never ready for it and when the time comes, there is instant pain...your heart just knows...it knows what is going on.

I do believe that saying goodbye is a gift.
Nothing is ever guaranteed in life...no one is ever guaranteed to always be in our lives.
Tomorrow could fall apart right in front of your eyes...that is why today is so important.
Saying goodbye is the souls right in letting go.
Letting go of your physical attachment to someone/thing.
But the emotional attachment tends to linger...that is what makes us human.

Just because I say goodbye doesn't mean I will forget.
It doesn't mean things will magically go away...memories...feelings...voids.
That is my job.
After saying goodbye I must learn to accept it all.
I must know that in life there are no guarantees...and that I was lucky to ever have whatever it was, or whoever it was in my life at all.

I must learn from my goodbyes.
With my head up, and my heart ready to heal.
It is the only way to move forward.

The fine line of physical control and emotional control is one that humans have a very hard time with.

"Love doesn't mean leaning, and company doesn't always mean security"

"After awhile you learn the subtle difference between holding a hand and chaining a soul"

I must learn to let go of my children...let them be.
Allow them to experience their lives through their own eyes.
Say goodbye to my hold on them as a mother...let them grow...let them find out in their way.

I must continue to allow the positive grace of life to flow through me without resistance.
I must know that because I allow things in my life I must experience them to fully understand them.

I will continue to feel blessed for those who are in my life today, for tomorrow may be a different story...
and when the time comes to say goodbye, I will do so with dignity, love, and the knowledge that our experience together is done...for now.

I see the beauty in saying goodbye.
Even through the pain, I can emotionally let go of things out of my control.

"And you learn that you really can endure, you really are strong, and you really do have worth..."

With every goodbye, you learn.

For anyone who has had to say goodbye, I wish you peace in your new journey.

peace :)

Just to clarify my "fluffy" ness...

Without beating around the bush I was sent an email in regards to my blog that was, well not the nicest feedback one could hope for :)

I wanted to share my insight to the person(s) e mail mostly because I think it is worth responding to in some manner.

Without disclosing any specifics, to sum up their thoughts on me and my blog, they accused me of being "too excited" and "fluffy" in my ways of dealing with having a son with Autism.
They felt I was "unrealistic" in my views and of how I choose to see the positive in all of this, because according to them there is "nothing fun" or "pretty" about Autism.
So, they basically felt I should stop feeding people a bunch of bull**** and be more honest with myself and with my writings...

I will say with complete honesty that if I had read this e mail 4 years ago I probably would have let it somehow affect me and my thoughts.
I will say with complete assurance that today it had NO affect on me what so ever.
I can appreciate every one's view on Autism, especially if they have personal experience with it.
I can respect that we all have our opinions and the right to express them.
What I cannot do is let any of these things change my course and affect my outlook on life.

I understand that I may not appeal to everyone...I understand that people choose different ways of dealing with Autism.
Some may find my writings too "dreamy" or silly because of the little things I focus on.
We all do the best we can.
We all make our own choices.
BUT...just maybe it isn't a bad thing to read the insight of other people, especially when you can't see their perspective...

Different perspectives are wonderful...they are what make us all delicately human.

And you know the simple fact is that I do have terrible days with Autism.
I still have nights that go without sleep...that go into days...
I still have to deal with the tantrums, biting, hitting, SCREAMING, etc...
I even have days that I never leave the house out of complete exhaustion.

So, I understand why someone would say Autism is not fun or pretty or anything worth writing "happy" things about...
I can understand it.
But I will not live it.

That is why I choose to write about the moments or experiences I have that I am more than Autism.
Moments that quite frankly are nothing short of magical.
I still choose to learn from my life.
I know that at the end of the day all I have is my thoughts...actions...myself.

I must hold myself accountable for my actions and thoughts...because what other people think, or might think they know about me doesn't matter.
Self pity is never beneficial.
Neither is projecting your insecurities upon others.

In the end, all that matters is what you do.
How you choose to live out the moments of your life.
And I feel that any action or word spoken out of love can never be wrong...maybe misunderstood, but never wrong if it comes from love.

I choose to be more than Autism on most days...not all of them...
So do a lot of people.

Autism is not what defines me, but what has made me stronger.
I live and speak from the love of my son, not out of defense.
How can I not see the beauty in that?

peace.

the inevitability of it all

I was at a HOA meeting a few weeks ago and at the meeting was my neighbor, a man of about 45 who has Autism.
I have stopped and spoke with his mother before as she recognized the all too familiarity of ticks she saw in Kannon.
As I mentioned in an earlier blog note that conversation was mind bending for me...

Anyways, as I sat in the HOA meeting all I could do was watch my neighbor.
He had brought along a clipboard and on it were pages of crossword puzzles ripped out that he was feverishly working on throughout the 1 hour meeting.
If you didn't know any better you would not even know something was "different" about him.
That is until he lets out one of his loud grunts and gets up out of his chair for no reason, walks across the room and finds a new chair...I watched as most people in the room raised their eyebrows in confusion.
Then there was me...just smiling at him the whole time.
I also got a glimpse of his crosswords...no words, just beautiful patterns he had formed on the papers by coloring in the boxes...

Obviously I have a soft place in my heart for people with special needs or disabilities because of Kannon and my father.
But what I don't yet have a grasp on is how to handle the months/years I have ahead of me.

I looked at my neighbors father who in my best guess would say is around 70, and he still had that look of concern and wear that I see on many faces of parents with special needs kids.
He still watched his son's every move, still went to the bathroom with him, and still held his hand as they walked out of the meeting...
He even had a bag full of "stuff" that we all know too well. The one that has any and everything in it just in case our child has a meltdown or looses their focus all of a sudden.
I saw him pull out pens, a calculator and some sort of juice for him during the meeting.
Still after all these years...he was still doing all these things for his grown son.

The love of a parent never fades.
The concern of a parent who has a child with special needs never fades either...
In fact as the years pass I find myself panicking at times when I think about what will happen with Kannon when I pass on.

This is the one thing that I have yet to find true peace with in my life.
How can I know that he will be alright when I die.
Who is going to love him...will he ever find love on his own?
Who will laugh with him when no one else does?
Who will protect him from the people who don't understand his ways?
Who is going to carry his bag full of "stuff"...

I find this part of my life to be the most chaotic.
Whenever I try to think about it rationally I find no solution.
If I try to make a plan, there is not a one that my heart feels good about...

I can only hope that someday, wherever Kannon's path in life takes him it will find good people.
People who can smile with him.
People who will laugh with him.
People who although may not understand why he does certain things, will still see him as a person.

Although I know it is impossible for someone to feel the love and compassion that I do for Kannon,
I know it is possible for Kannon to continue to live on just as happy and safe as he does now.
I know he will always find things to laugh at and explore even if I'm not there with him...

So I will try not perceive it as "inevitable"...
The uneasy thoughts I have about leaving Kannon behind.
I will continue to hope for a better tomorrow for him and all the other kids who have special needs.
Because they do grow up, they become part of society...they become adults.

I will consider myself lucky that I may already have found that one person I will truly grow older with every single day, and that I have a lifetime to continue to show him what real love is about.
So that when I do have to leave him his heart will just know...it will be full...it will get him through...

I will continue to share our stories in hopes of a better understanding towards Autism and the families affected by it.

I will...because life is Inevitable, so is the love we give every day.
The one thing I have learned so far in all of this is that even though there are times I feel like I am not getting through to Kannon, like I am talking to a wall...like I am loving someone who can't love me back...
I have learned that no human soul is capable of denying love...no matter what reaction or lack thereof we may receive.
Love gets through every single time.
Every word we mutter to them as they lay in our arms crying, every hug we try to give them as they pull away, every tear we wipe away from their face as they cry and cry out of pain...frustration...exhaustion...
They feel our love, our actions, even if they can't react to us.

I have to believe that Autism was "given" to certain people for a reason.
It has to be one of life's most challenging tests of patience and pure, raw love.
The thought of being trapped in my own body without a way out is overwhelming, and yet Kannon lives this truth every day.
He was given a challenge so huge that no doctor or scientist can yet figure out.
It is very real, very big, and for some reason it was given to our family to figure out...
And we may never.
But we will always have our love, and it has been strengthened to something beyond this world because we have been trying so hard to "figure it all out"...

I think I got lucky.
A lot of us did.

peace :)

family

I have always spoke of patience being one of the necessary elements in dealing with Autism.
But what I have yet to touch base on is the patience of those outside of our immediate circle(s) in everyday life.
I am speaking of family...friends...strangers...people who have lent an ear, hand or kind word in times of need.

I live away from my biological family, whom as the years pass by is getting smaller and smaller.
The past 5 years of my life have been painful and emotional, but they have been full of life lessons and change.

Such is life, always changing...evolving...whether we are ready for it emotionally or not.

This is where other people can really make a difference.
At least, this is where they have for me in my journey.

After I lost my father I received support from my immediate group of friends.
Those who have been there always, my childhood peers.
Their love, support, and guidance through the fog of grief helped me get back on my feet again.
I am forever grateful.

After I went through my divorce and received the dreaded "diagnosis" of my son, well this is where my world opened up to a whole new world of people.

I have met some of the most courageous, kind, patient, and emotionally honest people through my journey with Autism.
I am continually inspired and humbled by their stories and acts of strength and integrity.
If you have ever found yourself feeling alone and overwhelmed you should search online through the hundreds of blogs written by people affected by Autism.
These are the stories and words that got me through many dark times...this is also why I started my own blog.
If only I could reach out to one person...just one.
Because sometimes those who are closest to us just don't have the words for us.
Sometimes they don't know what to say after a day filled with tantrums, screaming, biting, echolalia, paperwork....etc....etc...
Not because they don't love us, or want to take away some of the pain...but because unless you know Autism you can't understand it...and that's o.k. It's not any one's fault.

There are many types of families out there.
Many definitions of what a family is.

I have found common threads and experiences with complete strangers through them sharing their life journey, and they have brought me peace.
I have also found support and love through people who have been in my life for years, decades, that I never knew possible...
I have also seen my biological family evolve with me and Kannon through our experience with Autism.

Out of love...out of hope...out of the kindness of their hearts.
I know I am lucky to have them.
I know that if it weren't for Autism I may have never seen this side of them.

I also know that Autism brings out the best, and worst in all of us.
I feel lucky enough to be surrounded by people who choose the higher ground, at least most of the time...
Perfection is not in my vocabulary, never will be...
I am lucky to be among those who chose to walk a path unknown, yet one that continues to strengthen all of our spirits and perspectives.

I suppose Autism allowed me these gifts.
It allowed these wonderful people to come into my life.
And for that I will always be grateful...

People are what make us better, even if we only watch from the sidelines we can still learn.
We can learn from one another if we allow it.
We can also be weak enough to let people help us.
We are all just human.
We all are here to live this experience together...
To create new families and to strengthen our existing ones.

I have come so far in my life because of people.
Because of my family.
Whether they walk into my front door every day or never will, they are still family.
And this is why I have survived.
This is why I will continue to survive.

peace :)

There's no place like home.

Kannon continues to be my teacher in life.
His insight and few words that he does speak are sometimes mind bending.

He has been home sick since last Thursday and has been spending a lot of time silent on the couch watching his movies and going in and out of sleep...
He is a great "sick" kid. Honestly he just lays there. No echolalia, no movie talk, no crying...just silence.
Every once and awhile he will muster up the energy to ask for "juice please"...then silence yet again.
The one thing he does like for me to do is sit with him and rub his back and play with his hair, I welcome it since usually this is overstimulating for his senses and he will push me away at times when I try to do this when he's not sick.

So I sat down next to him, rubbing his back and told him how happy I was he was here at home with me enjoying the peaceful day...it was our day together.
I told him over and over again, there's no place like home when you feel sick...

Then today he decided it was time to bless me with his beautiful insight that I have come to enjoy, welcome, and truly listen to.

We had just visited his doctor, we walked out to the car hand in hand and got in.
Once we got in the car he simply said to me,

"No looking back mamma...I am home"

My head jerked back a bit in amazement at such a statement.
I didn't say anything the car ride home, neither did he.
Just silence.

After we got home, he settled back on the couch with his pad of paper and drawing tools...

About 30 minutes later he came into my office, put the picture down in front of me and said again,

"No looking back mamma...I am home"

This time he hugged me, grabbed my face looked me in the eyes then walked away.

I guess I should never wonder how he feels about me.
About his path.
About where his hearts intentions lay.

He told me this today :)

peace.

The emotional balancing act of everyday life.

There are those moments when I realize that I am truly living in the moment with Kannon.
I am in it for him...not for myself.
I watch him run through the park hands flapping, words flying out of his mouth at a very loud volume, people staring...and I just smile.
I just smile at his energy and desire to be free.

I watch him see a little girl who has a balloon, his eyes light up and he just watches the balloon sway around in the wind...

I watch him roll around on the floor at stores searching for "treasures" and it makes me chuckle every time no matter how many glares I get...

I watch him stare at himself in the mirror making silly faces at himself and laughing...and it makes me smile.

I watch him draw scenes that are only in his imagination...they are truly beautiful...he takes such time with them, such care to make sure it is just perfect.

I sit next to him while he watches Scooby Doo, and I just hold his hand while he is lost in tv land...
I look at his feet, his hands, his eyelashes...I just stare at him being silent and still.
These are rare moments that I take advantage of.

I absolutely must freeze my conscious and allow myself to simply watch Kannon in times like these.
I must let him have these moments for himself.

I must.
Because when he does have an hour long tantrum, screaming...crying...yelling...
I must be able to take him back to himself when he can't.

Today was one of those days.
He was exhausted.
He had a very long tantrum that lead him to a very real meltdown of emotional levels.
His therapist could not get him back to good...he could not even regulate his emotions, he could not reach down deep enough to get himself back.

These moments are truly the most heartbreaking for me.

I stood in the corner of my room peering around and watching my boy lay on the floor in emotional exhaustion, pain and frustration on not knowing how to calm his body.
He kept saying over and over, "I promise"..."I promise"..."I'm so sorry momma"...
Mind you I had not been in the room at all, I had been in my room just listening to the therapy session leading up to his meltdown.

I decided to intervene and walked over to Kannon.

I picked him up in my arms, and for a brief moment I had the strength to carry my 75 pound son to the couch.
I laid him down next to me and put my hand on his head.
He immediately looked into my eyes and I immediately teared up seeing the pain he was in.
I gently rubbed his belly as I told him this:

"Baby, it's o.k to be sad...we all get sad every now and then. But you have to know that you are surrounded by people who love you. No one wants you to be sad, no one wants to see you cry."
He just nodded, he didn't say a word and he was still looking me straight in the eye.

"Kannon, you have to calm down...it's not good for you to be so upset."
He nodded his head again and said "I know mamma"

I then concluded by saying, "You are such a good boy Kannon, mamma is so proud of you and all the hard work you do and I need you to come back to me, o.k?"
"I need you to calm your body."

He took a few deep breaths, then put his hand on my chest and said "I promise mamma...don't be sad...I promise"

This is why I give him his moments in life, no matter how small or "weird" they may be.

Because today when I needed him to come back to me, to my moment, he did.

Life is about balance.
Even in regards to emotional warfare.
If you give, you truly shall receive...even in the smallest of victories.
But in a world surrounded by Autism, these are all that matter sometimes.

peace :)

A tale of pride

Friday and Saturday of last week myself and 4 others went on the most physically challenging journey to date in my life...
We summited Mount Whitney, which if you don't know is the tallest mountain in the Continental US.
It towers up in the sky at about 14,500 feet.
It took us about 18 hours round trip to conquer the mountain and we did it in 2 days.
We hiked up the 6 miles to camp the first day, then on day 2 summited the mountain and headed all the way back down 16 miles to our original campsite...22 miles in all.

Now I honestly have no idea why I decided to do something like this, but if I had to put my finger on it I would think it came down to proving something great to myself.

I know I am strong mentally and emotionally, I prove that every day dealing with Autism.
But was I strong enough to push myself in a situation that required both physical and mental endurance?
I had to find out.

Now that it is all over with I can reflect back on it all.
I will say without hesitation that it was absolutely the most difficult thing I have ever put my mind and body through...hands down it was grueling to say the least.
My body had never experienced pain and fatigue like that, and I still can't believe that I actually did it.

On the way down, which I thought would be the "easy" part, my legs and my knees were literally dead.
Every single step sent a shooting pain through my legs.
Oh, and on the way down it was sleeting, hailing and raining on us the entire way...so it was cold, wet and very slippery terrain.
With that said, with only 3 miles to go I slipped on a rock and rolled my ankle pretty badly.
Instantly I started crying out of pain, frustration and exhaustion.
I had a 30 pound pack on my back, rain drenching me and on top of the already physical pain I was in I now had to feel the pain of my ankle swelling in my boot with every minute passing.

I instantly reminded myself that if I can live everyday with Autism, I CAN DO THIS.
I repeated this to myself at least a hundred times on the way down the mountain...

For the last 3 miles down the mountain I emotionally broke down.
I cried off and on as I trekked down...out of pain, emotional release, exhaustion...
It was as if my body needed to release itself of so many things.
I thought about everything in my life up to that point.
I thought about my beautiful children.
It thought about my father's passing and his last few years on earth.
I thought about my friendships, my relationships, my family.
As much pain as I was in this time coming down the mountain was all mine...it allowed me peace...quiet...reflection.
It was a rare moment.
I have never cried so freely as I did for those 2 hours...my body was truly releasing years of pain.

I cried for Kannon, as if I was mourning him in some way...mourning a life I had hoped for him.
I cried for Kalena in hopes that she will one day realize how amazing her heart truly is.
I cried for my dad and how much I miss him every single day.
I cried for my grandparents and their golden hearts.
I cried for my sister and brother in law for their incredible support of our lives.

It was all very therapeutic.
I just cried...and it diverted my mind away from my throbbing ankle, so I guess it was the best thing I could have done at the time.

I came to realize that perhaps I was strong enough to make it as far as I did because of the life conditioning I have had to go through the past 5 years.
I have evolved into something because my life paths brought me here.
In a strange, perhaps cruel twist in life I have evolved into a better person because of Autism.

I do what I do every day for Kannon because I love him more than anything.
I never resent him or hate my life even if Autism takes over most of it.
I have never doubted my actions, passion, or abilities as a mother to Kannon.
I never doubted how tired I can get...how the repetition of my life everyday can get to me.
I just never knew how it may all someday come to "help" me...but on this grueling day it truly did.

Yet through all my days of survival with Autism I still doubt myself.
Over and over again.
Am I truly "enough" in the big scheme of it all.
Will I make it out of this life experience...
We all know living with Autism we don't have many choices available.
We don't get to choose much of anything really.
We just have to do the best we can with what that day brings us.

But on this day I did have a choice...I chose to climb this massive mountain.
Maybe I am crazy, but it was my choice.
Climbing Mount Whitney proved to me how strong I really am.
It proved to me I am bigger than my fears.
I am stronger than I know.
I can overcome anything.
And, the most important part of it all....

I DID THIS FOR MYSELF.

I allowed myself to be selfish to prove something to my soul...
And it was exactly what my soul needed.

What an awesome accomplishment...I have never been prouder of myself.
Sometimes we must allow ourselves the opportunity, the choice, to show ourselves just why it is what we do everyday...
Why we chose such a difficult path in life.
Why Autism is not what defines us, it is what makes us stronger...bigger than we imagined.

I can't help but wonder what Autism is doing to/for our children who have the disorder.
I know Kannon has climbed more mountains in his every day life than I will ever have the strength to do.
I know that my experience changed me forever.
So maybe Autism is not defining them...maybe it is refining them.

Just maybe.

peace.

walls...

I was inspired tonight by a post from a person I have come to respect and have a connection with, even though we live worlds apart :)

She spoke of the frustration of her son who has Autism not being able to respond to her words of love.
He could not tell her he loved her.
He couldn't respond to the actions or words that so easily flowed through her heart to his ears.

I know this feeling all too well.
I noted that I sometimes feel as if Kannon is in a brick room.
Just him, all by himself...unreachable by sight, by words, by touch.
Even though you can hear him, hear the mumbles coming out of his mouth you can't "reach" him.
He is untouchable.
He has put himself in a place that is unknown to him, but safe.

This is Autism.
A "safe" place he goes back to.
Unreachable.
Blocked off.
You could run into these brick walls over and over again out of sheer frustration, trying to reach him and you would knock yourself out most of the time.

The thing about being a parent to a child with Autism that makes us different is that we get up every single time and keep trying to knock these walls down...
Not just knock it down, break through it.
Break down those walls and reach our child.
Reach out to them and hug them.
Embrace their innocence.
Love them.

Even if we only do this in our minds, in our hearts, we still do it.
We still fight for that reality that for some people comes so easily.
Not out of anger or resentment.

Out of hope.

I believe Kannon and all the other kids out there with Autism are strong enough to lift themselves up over those walls and hear our words of love and hope.
I also believe that even if they can't find the strength or clarity to lift themselves up we are speaking loud enough for them to hear us through those walls.

We are bigger than Autism.
We are able to speak above the concrete foundations that Autism sets.
We can break down these walls that surround our beautiful children.

We must expose them to this world.
We must keep trying.

Out of love, out of hope, and because we know moments are all that matter.
And not just for ourselves, but for other people so that we can educate them on this disorder.

So maybe sometimes those walls can be made of brick.
Sometimes of glass.
Sometimes of silk.

Walls can be broken down though.
We can make room for other possibilities.

Anything is possible when love is involved.

Thank you to Garret and Morgans beautiful mother for sharing in this experience...

peace :)

the roads that lead us closer to ourselves

Kannon was drawing today as he always does so quietly and contently...he will sit at the dining room table and draw for an hour, no joke.
Those of us who know Autism know that anything done for that amount of time is a rarity.
I feel it is one of his gifts he gave to himself to help him express his emotions and life on paper.

Today he was drawing a castle with a long winding road that lead to the front doors out onto the vast edges of the paper...leading to where or what, I don't know.
I sat down next to him and watched him put the final touches on his masterpiece....grass...a blue sky...sunshine.

I then asked him about the road.
So winding, very articulated, it seemed to have a sense of purpose to my eyes.
I asked if the princess walked that road to go home...he said "yes, one way"
I thought about his response for a minute then asked him if the princess could walk back the other direction on the road, he quickly responded "NO...one way...to her home, no back"
Then he went on to say "It's ok momma...make princess happy go home"

What insight his soul has.
Now maybe I am looking into his response more than I should...but that's what I like to do at times when I see such passion in Kannon.

He mimicked with his finger the princess coming from off the paper up the road around the corner and to her home.
When I asked him with my finger if she could go backwards he stopped my finger immediately and said what I had stated earlier.
He was not letting the princess go "backwards"
She could only move forward...to her home...to her happiness.

Naturally I would like to think this applies to us all.
Moving forward.
Moving towards our "home"
Never going backwards, or looking back.

Kannon instinctively felt that this was the only right answer.
He knew with his heart that this was the true road to happiness...and he has the gift to draw it on paper.

Just like his "friend" who he drew awhile back...
Kannon still talks about having a friend.
He still does drawings of himself with little kids holding hands and smiling.
He still talks about his friend and how one day he will have one...or two...
He also draws rainbows with pots of gold, pirate ships sailing in the deep blue seas, aliens with big smiles on their faces, Santa Claus with bags full of presents and princess' going home to their castle.

He knows what world he wants to live in and he draws it out on paper.

Life mimicking art...or is it the other way around?

Either way, I think we all should find our way home every day and not look back on the road that got us there.
We should just be present.
Be on our road home.
It is what makes our heart the happiest.
Even Autism knows this.

peace:)

My little Buddha...with a Buddha belly :)

Being a mother is probably the most rewarding, challenging and enlightening experience one could choose in life.
I am not excluding you Father's, I just obviously can't speak from experience there.

I have found over the years that I am constantly evolving.
Changing, adapting, and even sometimes reverting back inside myself.
It is all because I truly believe all most women want is to feel loved.
To feel validated and accepted.
We are emotional creatures who thrive on life and the experiences around us.
Our environments directly contribute to our energy...to our overall feeling of well being.
This is where the strong in spirit really shine.

Those who can rise above feelings of inadequacy, shame and self doubt will be the ones who truly find life beautiful.
Self pity, selfishness and regret are like poison.
It also hinders the ability to be a mother.
This is why motherhood is so damn hard.

After all, we are all just humans.
We all are capable of feeling the same emotions, acting the same scenarios out, and making the same mistakes.
We are allowed to make mistakes...then we must pick ourselves up and move on.
No regrets, no shame.
This is sometimes easier said than done.
Sometimes we will continue to walk around with dirt on our face...and not moving forward.

There is no shame in falling on your face every now and then.
I do it every week.
However, I have learned how to get up quicker and brush it off with ease.
And, I don't look around anymore to see if anyone saw me "fall"

I have learned from all these falls that living in truth will set you free.
No secrets, no shame, just my life the way I am choosing to live it.

I don't care if people think I am crazy because my child wears a princess dress.
Who cares if I get looks when Kannon face dives into clothing racks looking for trash...
It doesn't matter if I only had the desire to put on sweatpants and no make up today...or tomorrow.
Nor does it matter if my to do list keeps growing by the hour. It will get done. Eventually.
It is my truth.

I do know that the fabric of my being is what matters.
At the core of it all I am good.
I have made mistakes, but I never doubted the fabric of my being.
I am living in truth.
I am being the best mother, friend and person that I can every single day.

Kannon's presence in my life taught me most of this.
The fabric of his being is one of the most beautiful I have ever seen...strong and colorful, yet sparkly and flowing...
I watch him live his truth out every minute.
He fights for truth and joy all the time.
He can't live any other way.
Autism won't let him lie, or cheat, or take the short way out.
He must face it all head on every day.
I am so lucky to be a part of his journey...of this beautiful person finding his path...exploring all life throws at him.

He is a warrior...he is my teacher.
Ironic that the name "Kannon" is one of the main Bodhisattvas in Japanese religion.
He/She is the goddess of compassion.
Every day people go pray to "Kannon" for help with their every day lives...to help find their way.
I found a picture, one of many, where some people in Japan were at the statue of "Kannon" praying, and at "Kannons" feet there lay beautiful fabrics everywhere...greens, gold, blues, reds...all sparkly and flowing...it was beautiful.

I somehow instinctively created my own little Buddha...and he is my truth.

peace :)

Breaking through...and putting it back together.

You just never know when things will come together...or for that matter fall apart.

I sat here this afternoon while the kids were settling down after a long afternoon of running around...the beach...a long hike during low tide checking out all the sea creatures thriving...it was awesome :)
Kannon was magnificent today.
He explored things, he observed and he truly just enjoyed being outside in nature.
He was calmer than usual and I even caught him closing his eyes raising his head up to the sky and just soaking it all in...I wish I had my camera to capture the moment...but it is an image that will forever be seared in my mind.
My beautiful boy, calm and serene...raising his head to the sky and enjoying life.
He picked up many rocks, sticks and watched in delight as crabs scurried across the rocks when we would approach them.
It was a great day.

Back to my original thought...
As I watched the kids wind down from the beach I saw Kannon walk over to his books and grab one.
He picked it up, walked over to our friend who is visiting us for the weekend and sit down next to him.
He opened the book up and a miracle happened.
He literally started to "read" line by line the book, 5 Little Monkeys.

"5 Little Monkeys jumping on the bed, one fell off and bumped his head, mommy called the doctor and the doctor said...NO MORE MONKEYS JUMPING ON THE BED"...
All the way down to 1 Little Monkey.
Clear as ever.
Articulated to perfection.

My eyes teared up with every verse...
I had to tuck myself back into the kitchen so I could listen without him seeing the tears run down my face in pride.
It was the clearest I have EVER heard Kannon talk in the past 7 years...it was as if he had never had a problem with language.
It was...well, it made my knees weak to be honest.
I have never heard my son speak so clear.
I have never heard his precious voice come through him like that.
It is hard to put into words, but it is like hearing someones voice for the first time.
I mean really hearing them...hearing their true voice.
Not the Disney movie lines pouring through him...not the verbal ticks...none of that.

It was heart bending.
I felt at that moment my son was breaking through to himself.
He had actually made it through.
He was talking.
He was clearly articulating words.

Sometimes things come together.
Sometimes all the hard work comes together in a head on collision at the most unsuspecting moments.
All the therapy...hours and hours and hours of it...shining through in this brief moment.

Today I got a rare glimpse into the potential Kannon truly has.
The true person he is under it all.
Under all this....Autism.

Under it all he is there.


Then, an hour later he was back into Autism world.
He was back into a confusion of Disney movie words and phrases...he had lost his clarity.
"Mamma...Look...Mamma...Are you serious...Crabby Patty...Crabby Patty...Mamma...Look"

At least I had that moment.

I will never forget it.
And I will not let Autism forget about it either.
I know better.

peace :)

Reality checks...Can I get a Rain check please?

I have mixed feelings on reality checks.
Mostly because of my overall perception of what reality truly is.
By definition it states:


real existence: actual being or existence, as opposed to an imaginary, idealized, or false nature


Then I am stuck on the notion of "ideal...idealized"
Don't we all strive for a sense of perfection within ourselves?
Maybe not even perfection, just a sense of being comfortable and happy within our own world.
I think most of us take it day by day...moment by moment...feeling our way towards comfort.


So true with Kannon.
I get reality checks hourly with him in my life.
As I walk side by side with him through every day adventures I am lucky enough to experience the world through his eyes...his reality.
He truly is striving to find a sense of comfort within himself.
He is constantly trying to calm his body, comfort the ticks that flow so consistently through his body...
He is constantly rediscovering things...he has the curiosity of a much younger child, the senses of an old wise man, and the creativity of a village of artists/performers...it is a wonderful combination...
A short example of this was the other day we went to a store, Kannon immediately got down on his hands and knees and started to look under the stores display racks and shelves...
I had no idea what he was doing at first, neither did the older couple he was right next to as he lay belly down on the floor reaching under the shelf...I didn't stop him...I knew this was all going somewhere interesting, or at the very least it made me chuckle to myself seeing the reactions of people watch my son belly dive into the racks for no apparent reason...
He emerged with 3 pieces of "trash"...a metal clip of some kind, a paper tube, and a tag that had fallen off of some merchandise...
Within minutes he parked himself in the aisle and was busy playing with these items that his brain found so very interesting...interesting enough that almost like a bloodhound he instinctively knew they were treasures hiding beneath the racks waiting to be dug out.
He made some sort of ship and it occupied his interest long enough for me to look at what I needed to.
Magnificent imagination...his way of calming his mind...curbing his endless curiosity and creativity...
It was wonderful.
He is wonderful.


Anyways...
I am finding the peace within myself by finding the beauty in simple things.
With Autism the simple things can take on a life of their own sometimes.
I lost count on how many times I have thought about taking Kannon on an all day excursion...the beach, a nice lunch, some shopping...
Then I cop out because the reality of it overwhelms me.
But that's o.k.
I have become better at not beating myself up over not being supermom.
I simply cannot do it all every single day.
It is no big deal if my errands don't all get done...they can wait another day
And that is o.k.


No, that is great...
Because I am creating my own reality.
My own sense of comfort that carries me through the really hard times.
Just like Kannon does.
This doesn't mean that I won't push my own limits of comfort...how else can I grow?
I will continue to push...and push...making my own world bigger and bigger as I learn.


I just prefer to take it day by day.
Hour by hour.
Moment by moment.


When I get true reality checks is when I become overwhelmed and loose perspective.
When I see older children and adults living with Autism, when I read articles about how parents shouldn't become too attached to their children with Autism because we eventually will have to put them in a home...
When I read the latest findings on Autism, and they are still as vague as findings from last year...
When I watch Kannon get teased in front of his face and laughed at...
These are the reality checks I would rather not address in my world.


Naive? 
Maybe.
But my perception is something that as a parent is truly a gift.
It is something that we have earned, and must continue to work on.
I have learned that perception and emotional set points can, and most of the time should be changed.
Perception should not be rigid, or fixed...just as ABA therapy is constantly trying to teach Kannon, I too should work on my flexibility/rigidity.
It is what makes us all beautifully different...our perception(s).


Just like Kannon.
And all Autism worlds out there.
Any world really.
We all contain and manage our perceptions within our own "world".
Perception is powerful...creative...necessary.
And it should come from love.
So should reality.


peace.

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

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

It happens.
Life happens.

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

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

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

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

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

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

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

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

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

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

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

I am not alone...
Neither is Kannon.

peace :)

A day on the job.

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

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

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


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

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

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

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


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

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

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

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

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

peace.

Organized chaos

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

Obviously this could be applied to Kannon too.

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

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

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

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

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

He was happy...
He had come back.

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

peace

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

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

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

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

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

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

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

Welcome.

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

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

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

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

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

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

ever.

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

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

I'm game.

peace :)

ego? not in this house...

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

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

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

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

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

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

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

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

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

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

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

So take that "egocentrism"

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

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

peace.

No good deed goes without reward

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

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

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

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

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

It all comes full circle.

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

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

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

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

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

As Kannon's mom.

peace.

And, some days just make me happy...

I have found the peace after the past few weeks of ups and downs...
Kannon was having some tough allergies/behaviors and we had to up heave our "normal" routine and make some needed changes.
So, here we are.
Another day living with Autism, and it isn't terrible.
In fact, I have been smiling all day.
I feel great...renewed...strong.

I have found that acceptance in the bad times make the good times that much sweeter.
I accept the little bumps we go through every day with Autism, and I am getting better and better at going over them.
I still get sad and overwhelmed at times, but that is only because Autism will beat you to the line of "ready, set, go"....
Oh crap, I'm behind again...when did someone say go???
But, I eventually catch up...it makes me stronger.

I can look at my boy and see the beauty in all of this.
I can see the beautiful face I created, his warm eyes, brown hair, and perfect smile.
I can understand that this is the biggest lesson in both of our lives and we are doing it together.
Not a lot of people can say that.
I am doing everything step by step with Kannon...and because of that I can see all the small victories I may have missed if he was off without me.

I have found the beauty in managing my time and sticking to my rigid routine.
Kannon needs the routine, and it makes things easier for me because at least I know what I need to do each day.
The behaviors, mood, incidents are all variables and differ from day to day...but the routine is always underlying all of it.
There is comfort in that.

I have found the beauty in the ups and downs.
The highs and lows, the good times, and not so good times...the clarity with the fuzzy.
It is all part of my everyday life.
It is all o.k.

I am o.k.
I sometimes need to remind myself that I can go through the down times and I will come out of them even stronger...now that's a great thing.
Autism has strengthened my spirit, mind, and body.

And it does it every single day.
Not a lot of things can do that.

I am happy today because I know I can get through anything.

Because I have.

peace :)

Some days just make me sad

I try to stay away from addressing these moments.
But whether or not anyone ever reads this, it doesn't matter...it is truth.
It is my reality.

It makes me sad that when I say goodnight to Kannon he doesn't want me to just lay there and cuddle with him...talk to him...about his day, his dreams, his expectations.
Instead I usually am left talking AT him.
I think he knows all my dreams, hopes, questions...he has "heard" them all.
It makes me sad that I have to prompt "I Love You" to hear it back.
It makes me sad to have to think about the concept of if he understands what it all means.

I lay awake many nights and just think.
Think about it all.

The Why's.
The How's.
The What if's.


Specifically...

Why does this disorder happen to children.
Why so young.
Why at an age when they have no chance of understanding it all...maybe that's not a bad thing though.

How can I do this another day.
How can I put on my brave face and smile through the moments of pain.
How can I guarantee I will pull out of all this successfully.

What if Kannon was normal.
What if tomorrow he is able to talk to me...really talk to me.
What if they find a cure...will I be able to readjust my heart to that reality...


Why do I even bother with such questions?
How can I ever expect answers?
What if this is all the greatest gift and test of a lifetime and I was lucky enough to receive it?

The pain.
The truth.
The heart.

What really makes me sad is that I can't reach out to the rest of the people out there who know exactly what I am talking about.
And smile at you with tears in my eyes and just cry with you.

I am sad today.
I know there are others who are sad too.
And I am so sorry for that.

Basically I am left with this thought:

Why can't Autism tell me How I am going to get through today, and What If tomorrow doesn't bring the answers I hope so much for?

Can I do it all again...and again...and again...

peace.