KoAutism

Restricting my inner dialogue. Putting my pride aside...

2012-02-17T09:39:00.000-08:00

Plain and simple.
I do it every day being Kannon's mother.
Honestly, I am fine with it...I have become accustomed to the feeling of "sucking it up" for the greater good...for the benefit of Kannon.

It does get tiring though, and man does it sting sometimes.
It stings when you are sitting in a meeting on your sons behalf with a group of "professionals" and you get a mouthful of rude talk because they are automatically defensive with any parent.
I have found that a lot of those who deal with parents with special needs children come in with their best defense up only because some parents really can be harsh, rude, and snippy while fighting for our kids.
And vice versa...I get both sides.

What I do not get is how the bigger picture of trying to collaborate towards a positive outcome for everyone would not take precedence over any emotion or action.
Why instead one would chose to be rude, offensive, and very unprofessional.

And in the end I am left with the sting of these words all because I want the best for my child.
I suck it up so that there will be no repercussions on Kannons behalf.
Unfortunately from experience I have seen it before, hence why I rarely express my inner most dialogue even if it requires the most ninja like self control tactics.

Maybe this makes me appear to be a push over, or someone who seems to lack the ability to defend myself...
Kind of like the appearance of one who has Autism.
But we know better don't we.

I just have to be better than them.
Period.
I have to put aside what runs through my head and heart because of people who truly misunderstand my entire situation and intent.
It truly is a glimpse into Kannon's everyday life.
He does this all the time...and to imagine how much pain he has had to internalize and sort through at such a young age is just beyond my grasp.

It is a collaborative love.
A collaborative relationship that will carry us through the hardest of times...
It is the reality of the fight we go through for what is rightfully ours.

And thank god for good friends...for other mothers who have had to sit exactly where I did and deal with the political nonsense that we have to for the benefit of our children...
For without being able to vent to them afterwards I would have already lost my mind.

Here's to the daily fights we endure on behalf of our children because we have to...because our child can't speak for themselves...because we can only hope we are doing the right thing.

peace.

denial. one of my life lessons.

2012-01-16T14:28:00.000-08:00

Sometimes when you love something or someone so much it is almost normal to be in denial when something is wrong.
When your heart is heavy and that moment comes when you realize something is off within your internal guts...you have that feeling of fear...of having your feet swept out from under you.
Fear of the unknown.
Fear that whatever the problem is you won't know how to "fix" it.
That is when denial digs in.
Denying to yourself that there is a problem because somehow you instinctively know that it is going to be really hard to change or fix it.
Hard, life changing work.
Knowing your heart deserves better...that you need humbling...you need balance...you need peace with yourself.

That old cliche, "Nothing worthwhile in life is ever easy"
This is why sometimes, some people find denial an easier alternative.

When Kannon was a baby there were no "warning" signs that something may be wrong with him.
Nothing.
He laughed...he cried...he started walking at 10 months...he got into trouble...he physically looked fine...

Not until I put him in daycare 2 times a week when he was about a year and a half was there a reason for me to open my eyes just a little wider and feel concern.
He wasn't as chatty as the other kids, in fact he wasn't chatty at all...
He had no vocabulary.
How did I not realize this before?
How, as a mother did I not notice my own child had not formed a single word yet...
I looked around and saw the other kids labeling all the animals in the room, talking about the different colors in the displays the teachers put up around the room...it was like being hit by a semi truck, my head was spinning and I panicked.

I remember going home after seeing all of this and calling my mom.
Who knows if I made any sense during that conversation, but I do remember saying "I think something is wrong with Kannon"
I remember her telling me that "He's just a boy...boys sometimes just take longer to develop than girls do..."
My pediatrician told me pretty much the same thing that next week when I made an appointment to come talk with her about my new concerns.
Truth being, I believed them.
These were people who I trusted and who I knew had Kannon's best interests in mind.
Truth is, I wanted to believe all of this.
That Kannon was just slow...that any day now he would start talking...that his behaviors were normal for a boy his age.
I mean after all, it wasn't that far fetched for these to be his truth...

How wrong I was.
Looking back today, it all makes me shake my head and just laugh.
Not because no one knew what was wrong with Kannon, but because as a mother I was in denial that something WAS wrong with my child.
My heart did not want to face such a big, scary concept.

6 years later I can be honest about those days.
How damn hard we have fought to get words to come out of Kannon's mouth.
How I will never ever again in this lifetime take for granted the graces of every day life...
How powerful denial can be.
It is the blanket of the soul.

Stop. Look around. Realize what is happening to you and embrace it with all you can...even if you can't understand an ounce of it.

Being a parent to a child with Autism could possibly be one of the most difficult jobs ever...then again, I have only had a few jobs this life so what do I know.
However, being a first time parent with all the anticipation, hope, love and wonder that fills your heart is something I can speak of with accuracy.
It is one of the most amazing experiences ever.
It is the transformation of life, soul, and hope for all you know you were meant to be in your life.

So, you put these two things together...the first time parent and having a child with Autism....
It certainly puts your life into a whole new arena.
It is an emotional contrast of the most extremes colliding at once.
It is also one that more and more families are having to face every day...one that even professionals cannot help you navigate...one that is completely misunderstood by society.

Welcome to Autism.
Welcome to the rest of your life.
And although living with Autism is filled with many challenges, I am here to tell you it is one that can be done.
It can be done with grace, honesty, hope, and love.

I am only speaking from my experience.
From my belief system.
From my heart.
From my lessons of denial.

I had no idea something was wrong with Kannon until that day in daycare...
And from that innocent moment on, my life was turned inside out, upside down, and grounded all at the same time.

But it has become a journey that I have accepted.
In the beginning I was in complete denial, I did not accept any of my reality.
I did not want to experience my life because the unknown was so overwhelming and so scary that it was easier to just push it back.
And did I ever push it back.
I denied the pain.
I acted out every day out of fear, self pity, and pain.
I never for one moment had the emotional grace to think of my own son, what he had to be feeling, how hard this all must be for him...

I watched as Kannon fought every day for life without realizing how hard he was fighting.
I watched him cry out of frustration...cry because he couldn't understand himself.

I sat there next to him while he would scream in emotional pain, his body having tantrums...

It was not until I came out of my "fog" of self denial that I really saw what was going on.
I was not letting it in.
All of this pain and struggle I was so used to seeing for years was numbing my soul.
I watched my father slowly die from Alzheimer's for years...and then I had to watch my son experience Autism.
It truly was too much for my heart to handle at once.
But the fog did clear...and I honestly have no idea what made it clear for me.
If I had to guess I would credit it to a few good friends who loved me enough to carry me through and talk to me with loving, honest words...and of course time helps one heal as well, as long as you use that time wisely.
I didn't have the perspective, luckily I had a few people in my life who did.
Pair that with a stubborn, strong minded person...well it all worked itself out.
I worked out the anger, hate, and denial.

As for having to watch Kannon go through what he does every day, it is beyond humbling.
I have no reason to ever complain or find any person I encounter not worthy of compassion.
It may sound strange, but I have had the honor to see what real pain is...I have seen death and I have seen new life...

This is what saved me.
To see a human soul that was not in denial.
That simply wanted to live a happy life and who didn't care what other people thought.
To watch someone transform impossible emotional situations into a smile...
How could I not let go of my own bullshit and know that life is possible if you fight for yourself.

I have seen a simple, innocent soul who came from love grow into nothing short of a miracle.
Not because of some divine intervention...but because of hard work.
Because he wanted life bad enough to fight for it.
Because he would not allow any false situations into his reality.
Because he was not in denial about anything...
His purity of spirit is so raw that it can't help but slap you in the face and make you smile at the same time.

He chose to enjoy the show over losing.

Kannon knows the bigger picture is worth it.

His progress is inspiring, as is his fight with the disorder he was born with.

We all have our "stuff" in life.
To deny our truths will only set us back.

I forgave myself awhile ago for the mistakes I made, for my actions I made out of denial.
I forgave whoever and whatever it was that "gave" Kannon Autism.
Kannon never blamed anyone.
He may never see his disorder face on...in the physical, logical sense...
But I believe he knows himself better than most people do.
He knows he is pure of heart.
He loves himself more than most people will ever fight through to learn to do for themselves.

This is how life is possible.
This is why our family will conquer Autism, even if only in the emotional sense.
We cannot deny that it is our truth.

It is our truth.

peace :)

2012-01-06T11:01:00.000-08:00

Autism wins every single time.

Without hesitation it wins.
I never ask why anymore...because I know that Kannon can't control most of the things his body does, or his mouth says.
I don't make excuses for it anymore either...it is just what it is.

The looks.
The head shakes.
The big eyes.
The laughs.
The cruel words.
Humanity at it's worst.

Autism wins.

These are not words of defeat.
These are words of truth.

I know by now that the only fight I need to have is getting Kannon the help, and therapy that he needs to hopefully someday recover from Autism.
I have to continue to be his advocate.
I have to fight for what I feel is "right" for his survival and future.
I have to, no I want to continue to be his best friend...to love him when sometimes the world cannot.

I do not need to fight humanity anymore.
I cannot get my feelings hurt because sometimes people are ignorant and cruel.
It is not a part of my journey anymore.
I will not stop to explain calmly anymore to the person who just shook their head at my son and myself that "He has Autism and can't help but have a physical reaction to his environment"...
I cannot be a parent to other kids who are mean to Kannon and hurt him physically or emotionally.

Autism wins.

I am not angry.
I am definitely not throwing up my arms in defeat.

I am simply not going to allow certain static into my life stream anymore.

It is not beneficial to my future, to my well being, or to the future of Autism.

Spreading awareness is.
Letting people who read these words and care enough to read them, to allow this awareness within their hearts.
Show by example.
Show compassion for those who are "different" than most of the people in our lives.
Let people know that Autism is very noticeable for the most part...very loud...very messy at times...and sometimes not pretty at all.

Most importantly people need to know it is a disorder.
The brain is "messy"..."misfiring"..."different"

Autism is raw at best.
It reacts to the environment it is in, in the most obvious way possible at times.
If it is too loud...it doesn't like it.
If it is too bright...it doesn't like it.
If there are a lot of colors, textures, people...it will react to all of them, or at least one of them.
It is very compulsive.
It is passionate.
It is also brilliant, if not genius at some level.
But the most important thing is at the core of all of this there is a person who wants more than anything to be accepted...to have friends...to be able to communicate with those who love them the most.

I see Kannon struggle every day with who he is.
I see him stop at times when we are out in public when he knows he should be doing one thing, yet another reaction or action comes out instead.
He will sometimes look at me while his body is reacting to something and have the saddest eyes...his soul knows...
I see his soul trying to overcome the pull of his brain.

Just because you don't recognize something, it doesn't make it wrong.
Kannon doesn't recognize himself on some days...he is lost...his disorder just takes over.
But he still fights for it.
He fights for recognizing himself...for what he knows to be true, and only he knows this truth.

Imagine if you can being bound inside a glass box, but the reflection is on the inside and people can still see in to watch you...
You would have to watch every single move you made, but you had no control of what you did.
One part of your brain knows what it wants to do...but this damn disorder takes over and does something else.
It reacts to the stimuli around you, and your bodies reaction to them are out of your control.

I like to refer to it as Kannon's "Dance of Life"
The hands flapping, the head swaying, the legs shaking...the repetitive noises, the ticks...

It is art brought to life, compliments of the brains reaction to life and the soul enveloping all of it.

Autism wins every time.

Why can't this be beautiful...

peace :)

If you only knew. You someday will.

2011-12-13T21:20:00.000-08:00

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.

2011-12-02T16:09:00.000-08:00

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...

2011-11-25T22:10:00.000-08:00

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.

2011-11-18T12:54:00.000-08:00

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

2011-11-14T14:17:00.000-08:00

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 :)

2011-11-07T10:38:00.000-08:00

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...

2011-10-19T11:23:00.000-07:00

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...

2011-10-14T08:53:00.000-07:00

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

2011-10-07T11:40:00.000-07:00

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

2011-10-04T12:28:00.000-07:00

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.

2011-10-03T16:18:00.000-07:00

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.

2011-09-26T20:06:00.000-07:00

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

2011-09-19T11:37:00.000-07:00

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...

2011-08-30T21:48:00.000-07:00

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

2011-08-25T17:47:00.000-07:00

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 :)

2011-08-19T12:57:00.000-07:00

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.

2011-08-14T19:14:00.000-07:00

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?

2011-08-02T14:26:00.000-07:00

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 :)

2011-07-19T09:05:00.000-07:00

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.

2011-07-13T15:49:00.000-07:00

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

2011-07-06T10:28:00.000-07:00

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 :)

2011-06-23T22:24:00.000-07:00

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...

2011-06-13T10:08:00.000-07:00

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

2011-06-06T20:53:00.000-07:00

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...

2011-05-31T15:28:00.000-07:00

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

2011-05-23T22:37:00.000-07:00

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.

The silence that follows you.

2011-05-16T08:48:00.000-07:00

I had an introspective day yesterday.
Not that I don't mind them, but sometimes they get to be a little "heavy" and I don't like to go there.
I have been speaking of moments lately, and the past few weeks have been stuffed full of them for me...
Hence the introspection.

Mother's day came and went without much movement around here.
Not that I was/am feeling sorry for myself, but basically as a single mother raising 2 kids I wasn't at the spa getting a pedicure or massage.
Let me also clarify the single mother status...Kannon does have a father, he is a nice person that sees him every other weekend for 2 days, and that is that. He lives about an hour away, so there are no daily visits or surprise visits. Just the scheduled weekend time...period. At one point he referred to him spending time with his children as "babysitting", so that might be a good indicator to his personality.
I will say that the divorce has made him a better father though. He has had to accept things that he didn't before, and he is much more patient and compassionate with Kannon.
I guess I say single mother, because that is quite frankly how I feel. I don't, and did not receive much emotional or practical support from his father in regards to Kannon's diagnosis...any services or support Kannon does and has received is due to my resourcefulness and fighting. Sure, he pays child support so that Kannon can eat and have new clothes or shoes when he needs them, so yes it could be way worse...but do I consider him an equal parent in all of this...no I do not.
Unfortunately some, hell most of us are not equipped to handle what Autism will throw at you.
It absolutely knocks you on your ass and quite frankly takes a lot of time to adjust to...if ever.
So, I am not bagging on Kannon's dad.
He did the best he could, and Kannon adores him...enough said.

But now, all of my days are now spent alone with Kannon and Kalena.
And, yes it is very lonely at times.
I do have a very kind, supportive boyfriend that has been great with my kids, but there is an underlying knowledge and truth that these are not his children.
I have made it clear that they already have a father, and all I would like for him to be to my children is their friend...and he is definitely that if not much more to them.
Honestly, he has been my saving grace in many times and he has been an amazing friend to me as well.
He is scared of all of this too though...and I don't blame him one bit.
Sure it stings, but the plain fact that someone doesn't want to jump in head first into a situation that is so unstable and unknown is completely valid.
When we talk about our future together, it is never really discussed at length because of Kannon and his needs, situation, etc.
Basically he does not know whether or not he will be here in the future because Kannon's situation scares him.
I understand. It scares me too...
So, coming full circle it all leaves me with a very empty feeling at times.

Will I be 70 years old, walking hand in hand with my adult son back to an empty house with just him and I?
Will there be anyone there for me?
I know I will always have Kannon, god willing, and I am thankful for the life friend I have within him.
But will I have someone there to cry to, to talk with, laugh with...grow old with as my equal?
I don't know...I just don't know if it will be.

I do not feel sorry for myself, never will.
I love the moments I have with Kannon.
I love going on walks with him hand in hand, looking around at all the beautiful things out in the world.
I even love talking to him without getting a response...he just looks up at me with those eyes and smiles.
He has absolutely become a fixture in my life that needs me beyond anything.
He needs my time, my love, my fight, my compassion, my heart, and my hand to hold to keep his feet on the ground...

As Kannon's mother I may never have someone to grow old with besides him.
I would like to think I have accepted that.
There was a moment last week as Kannon and I were walking to the park I saw an old couple hand in hand walking, and I teared up.
Maybe out of missing my grandparents, maybe out of the joy of seeing such sweet people enjoying the day...
Or maybe it was because deep down something inside me knew it would not be me.

Kannon will need me forever, I mean really need me.
These are some of the things a lot of people don't understand about living with Autism, the emotional toll, the absolute necessity to put this child first in EVERY situation, the financial stresses, it is all very real...and it all takes a toll on any relationship in your life.

And my reality I face is that in 5 years I may still have to dress Kannon, bathe him, redirect his physical ticks, calm him down when there are loud noises that scare him, hold his hand when we go out in public...and right now because he is a little guy it is cute and sweet and socially acceptable.
But what about in 10 years?
20 years?
Will I always be his only true friend...will there ever be someone else to walk hand in hand with him and smile and truly enjoy the day?
Will either one of us find another person to hold our hand?

Overwhelming, yes.
The truth?
I just don't know.

My heart can only continue to have hope...for Kannon and myself.
And the silence...it will follow me for as long as Autism continues to follow Kannon.

peace.

Recognizing a moment

2011-05-11T12:07:00.000-07:00

I was late.
I am usually the mom who is 15 minutes early sitting on the red wall waiting for Kannon to get out of school...
I love watching him come around the corner in the distance and look for me, then after he finds me, smiles, puts his head down and shuffles faster to me...
I know I anticipate him more than he does me.
I don't care though. It's nice to see any sort of reaction towards me.
It makes me feel good to know that he looks for me at all...that he cares enough to look.
As mothers in our situation, we will take these little moments any day.
I always give him the biggest hug possible when he walks up to me, then off we go hand in hand to the car for our daily lunch date, therapy, etc...

Last week I was late in picking him up.
Only 5 minutes, but I will never forget his face as I walked down the sidewalk towards the wall where he was standing with his school aide.
He was looking around frantically, and his legs rocking back and forth...he does this when he is nervous...which is a rarity for him.
Instead of walking faster, I slowed down...I wanted to see this precious angel of mine miss me.
Strange maybe, but I sometimes wonder if he does miss me when I'm not there.
Lord knows I have spent 99% of the past 7 years right by his side.
I never know if he appreciates me as much as I think he does.
I have no clue to the extent of his love for me...I never know if when he tells me he loves me if he does it out of echoing what I say, or if he feels those words as much as I hang on to them when he says them to me.

But right at that moment I saw a glimpse into him that I rarely get to see.
I saw raw emotion, not coached or prompted.
I saw love.
He was searching for me.

I knew right then how much he appreciates all I do for him.
I knew that he wanted to run into my arms and tell me he loved me...
I knew for that brief minute that my son truly, emotionally needed me.

It was written all over his face.
The familiarity of my face, of me is what he was searching for...and that is something...something wonderful.

After I came around the corner, he saw me, relaxed for a second, then immediately his body froze back up to his Autistic "form"...no longer was the look of longing, emotional fluidity written all over that beautiful face of his.
He started flapping his hands and already was perseverating on what we were going to eat.
He was right back to what his body "knows" what to do.

Interesting...since we fight so hard every day to help him break free of those physical ticks.
Interesting that when he felt most vulnerable and scared he turned into a "normal" child...at least in the physical aesthetic.
The brain is a tricky thing...so is Autism.

I think for that moment though I tricked Autism...
So take that.
I saw what my son is truly capable of.

That is what I will continue to fight for .
For him.
For the possibility that someday he can let go of it all and just love.

Until then, I will love him more than he can understand.
I will love him more than I receive, not because he's not capable of giving...I saw it with my own eyes the capability of his heart.
My love and hope for this child to break through to himself will keep me going...
It is these small glimpses into another truth that gives me hope for Kannon, and for our future.

Who knows if he will ever "recover"
It is every parents hope that their child with Autism can break free of it all...
Until then we as parents have to remind ourselves of these ever so small moments.
There is clarity within, there is a calm to the storm.

And just maybe I will be late a little more often :)

peace.

Moments from my gallery

2011-05-04T09:00:00.000-07:00

Moments are just that.
Here one minute, then gone...

I think we dismiss many moments too quickly.
The quick smiles, the calm before the storm, complete silence, a touch of the hand...
They go on and on.
Perhaps we can define moments by saying they are those times our mind takes a mental photograph and stores it away for times we need to be reminded of something...
Moments of love, frustration, hope, pain, joy.
They all count...they all matter.

I was reminded yesterday of some moments I put away.
My father passed away 4 years ago, yesterday was the anniversary of his passing.

I was reminded of the plane ride I took last minute when I got the phone call from my sister telling me he had slipped into a coma.
The smells of the airport, the material of the airplane seats...normally something I recognize then dismiss.
The people around me...rushing about to get wherever it is they are going.
I wanted to crawl inside myself and just cry...I wanted to make time stop.
I knew I was going to see my father for the last time...I knew when I got back on that plane it would be without a father in my life.
I remember what the man sitting on the plane next to me looked like, I remember the flight attendants name that brought us drinks, I even remember the ring tone of the woman behind me when her phone rang minutes after we landed.

I remember walking into the nursing home and the looks of the staff as they watched me walk down that long hall towards my father's room.
They all knew what was going on.
They all knew he was dying and that I was there to say goodbye.

What I remember most though was after he passed away before my mother, sister and I, was the silence.
Complete silence.
No more listening for him to take his last breath. No more suffering, no more whispers to him telling him to just let go...to be at peace.
I remember watching my mother lay on his chest...I can't imagine what that moment meant to her.

Then one of the most beautiful moments in my life came.
Without going on too much about him and his condition(s), my father suffered an accident 13 years prior to all of this that left him partially handicapped.
He never regained full use of his hands...they always looked cramped up, bent at the knuckles.
My point is, he could never hold our hands...he couldn't reach out and touch our faces anymore like he loved doing...he loved all us girls so much, and he used to always cup my face with his hands and just look at me sometimes...and smile.
He couldn't do that after his accident, so the last time I felt my dad's hands on my face was over a decade ago.

After my father passed, we all took our time with him alone.
I don't know what my sister or mother did, as that was their personal moment.
All I know is what I did.

I sat down next to him, took his soft hand in mine and just held his hand.
His hands were no longer cramped...there was no more pain within them.
I closed my eyes and imagined he was still there for just a moment...god I missed him already.
I then laid my head down next to his side and put my face in his hand...I closed my eyes and just let myself cry over all of this.
I took my mental photographs of this moment.
Then I tucked them away.

These are moments I put away deep inside my heart.
I don't let them out very often.
I do cherish them so much though, and love that they are there.
Some may find them grim, or sad, or strange.

That's what makes moments so very important though...
They are yours, and for your interpretation and heart only.
Sometimes it's good to share them in hopes of helping others...inspiring hope or love.
They are emotional learning tools for helping our heart grow and change.

I do the same with Kannon.
I take mental pictures of his moments every day.
Then when I have time to reflect on them I can just sit and be still with my own thoughts...
With my own pictures, to do what I want with them.
To smile, laugh, reflect, piece apart, find peace with...
But never to bring anger, or resentment...for those moments should be discarded the moment they feel that way to you.

I like to think of it as a beautiful art gallery of pictures within me that I can pick and choose which ones my heart wants to reflect on for that day...or that moment.
And that is the key, it is My gallery of artwork that my life created for me.
I will never stop taking mental pictures, no matter how sad or painful they may seem...because you just don't know what you may learn from them.
This is how I grow.
This is how I find peace and move forward.
This is also why I share.

peace :)

This song had to be written for us.

2011-04-27T16:16:00.000-07:00

If you have yet to hear the song "Fix you" by the band COLDPLAY, well then you just must.
Even if for one time, please look it up and listen to it...please.

Anyways, I was sitting here at my computer looking at e mails, checking schedules, blah blah blah...
When I hear this faint noise outside the window blowing through the wind...among the birds, the leaves, the Spongebob movie in the background, I hear music...I hear soft music.
My neighbor across the street had this song playing, and it is one of my favorite songs.
I don't listen to it too often because every time I do I end up in tears over it...
The words are just to close to my heart strings and I get lost in them every single time.

I honestly don't know what the song is truly about, but the words are absolutely beautiful, honest, and strike right to your heart.
Every time I listen to it I can't help but believe Coldplay was in my home watching my life like a fly on the wall and came up with this song :)
Watching me in my most vulnerable of times, when it is just Kannon and I talking on the couch together.
When we sit down after a long day and one of us ends up crying out of frustration, exhaustion, or both.
Or, even when we are laughing, crying from joy because we had a breakthrough...
Just life.
Frozen moments that we as parents hold so close to our hearts, and sometimes just can't get out of our heads.
Moments we wonder mean anything, or if they ever will...I have to believe they will.
If all of this is going somewhere...if the years ahead will provide the proof we are looking for in our hearts.

Well, I pulled a few verses from the song that I thought were pertinent to my life, and I know others can relate to them on many different levels as well.

Just some food for thought, and thank you to Coldplay for such words when sometimes we don't have them...

When you try your best but you don't succeed

When you get what you want but not what you need

When you feel so tired but you can't sleep

Stuck in reverse

And the tears come streaming down your face
When you loose something you can't replace

When you're too in love to let it go

But if you never try you'll never know
Just what you're worth

I promise you I will learn from my mistakes

And I will try to fix you

peace :)

why we do what we do.

2011-04-23T22:28:00.000-07:00

I was asked a great, insightful question today...

"Why did you start writing about Autism...more specifically why would you share your personal life with complete strangers?"

Well...my first reaction was:
Because if there was only ONE person out there who happened to stumble across my blog in the middle of the night, after having a catastrophically bad day, and feeling alone in all of the crap Autism can throw at you...well, then I would hope they could read my "crap" and know they were not alone in it all.

I started writing because I would find myself many times searching for something...for anything that would help me understand all of this.
Something...more importantly someone that could cry with me...without having to talk about it.
Someone who really got all of this.
Someone who knew all the dirty secrets I kept to myself out of shame...out of fear...out of not understanding why this beautiful little person I created is creating so much pain in my everyday life.

I wanted a friend that I could just look at after the day I had and they would know....
They would know exactly what my look meant.
They would just know.

Obviously Autism can be very isolating.
Hence, why late at night after the storm settled I would sit down at my computer and just read.
Read the words of other parents who were going through what I was...in some form at least.

We all know what we have is very different.
No one has the same story or experiences.
All we can do is share...out of hope...out of frustration.

All we really want is validation that we are doing a good thing, hell that we are doing anything really.
I know so many times I felt that my days were melting into one another without any differences...without any feeling of accomplishment....just pure survival mode.
But that is something.
Surviving the really hard times make the good ones that much sweeter.

I am not an expert, nor do I ever want to be.
What I do know is that I brought my son into this world and he has Autism.
So why shouldn't I/we share our stories about them...the good, the bad, the everything.
You never know who you can touch or help with your story...you just never know what someone might be searching for at the end of their day.

Talk about the biomedical, causes, triggers, environmental factors...we all have our opinions on all of this.
I am open to all of it, I appreciate all of it.
I read articles, studies, peer reviews every week.
I find them all very interesting and pertinent to my situation at times, so that's always helpful and somewhat eases the practical side of me.

Practical however is not the side of me that sits down and writes any of these blog entries.

Practical goes and passes out right after I put the kids to bed and it is just me...alone, left with my heart and my thoughts of the day.

Practical is not what I would read about years ago when I needed someone to reach out to after I had a bad day.

So back to my original thought...why did I start writing?

I did it out of love for my son.
Out of necessity for my soul.
I did it because I don't care what anyone thinks of my personal life.

I did it in hopes that if I helped one person who felt as alone and helpless as I did at times, then I am doing something wonderful.
Because even though in my heart of hearts I know what I am doing every day for my son is wonderful, I would love for someone else to validate my actions through truly understanding it all.

Because sometimes we can't reach out to those closest to us...
And that is o.k.

Sometimes we have to reach out in hopes of finding truth...acceptance...peace...validation.

Sometimes we have a friend out there who gets us better than those we hold dear to our heart.

Sometimes...
And that is a beautiful thing.
That is humanity at it's best.

And that is why I share...I know Kannon would do the same if he could.

peace :)

Bad day? No...just a grumpy princess who needed a life slap.

2011-04-18T11:58:00.000-07:00

When you live with Autism, or any other difficult life situation I know there are some very dark times.
I know I have considered myself in dark situations, trying to escape this current reality...but I always come back to a good place inside my heart. I never let myself go too far in the direction of hopelessness.

I try every single day to do the best I can.
I love myself, my son, my daughter, my friends and family.
I remind myself how blessed I am to be able to live this life and experience all it has to offer me...ALL of it.
I know I chose this journey in life for whatever reason, and I accept the lessons that come my way no matter how hard some of them may be.

I have learned to forgive myself for times I wasn't as strong as I could have been.
I let go of guilt, judgement, and worry...because honestly none of them will serve any positive purpose in my life ever.
I try to fill my heart with as much joy and hope as possible every day, because you just never know when powers out of your control or conscious will point at you and say, "You, it's your turn now"...

Then...there are days that I get slapped in the face and some of that familiar pain I work so hard to dissolve every day comes right back.

We were at the store a few days ago and Kannon, Kalena and I all went in to the Ladies restroom.
Kannon went into the handicapped stall and Kalena and I shared a smaller one next to him.
Kannon finished first, I heard him flush and come out and start to wash his hands.
Within a second I saw someone walk into the bathroom and go to the handicapped stall, then turn around and right in Kannon's face yelled...

"Next time use the regular bathroom...and the boys bathroom...AND put the toilet seat down..."
Then she slammed the bathroom door shut and muttered something under her breath...I'm pretty sure I heard the words "stupid kid"...

My face immediately became a frustrated shade of red.
I calmly came out of the stall, where Kannon was cowering in the corner scared of this stranger who had just yelled at him...and I am not exaggerating...YELLED at this 7 year old who has no words for her in return.

He immediately grabbed onto my shirt and hid behind me just staring at the stall where the lady went into.
I continued to wash my hands and Kalena's hands, then we walked out and stood waiting outside the bathrooms...Oh I was not going to let this one go...

I had maybe 4 minutes to compose myself, figure out what I was going to say and try to remain calm...because at this point I truly wanted to explode...and cry.
I haven't felt emotions like this in a long time...I have learned to not default to anger or frustration because I know it will not do me any good to allow others to affect my emotions.

So, out came the lady.
She was in her 50's and she was using a cane, so she clearly was handicapped and thought that since my son didn't have any visible faults he was "fine" and abusing the use of the handicapped stall...

She walked right up to me before I could even think about approaching her and said "You need to teach your son to put the seat down and respect the use of the handicapped stall...what kind of mother are you?"

What kind of mother am I?
If this grumpy old woman only knew.

So, I said in response to her...

"First of all, I apologize if you felt my son was being rude by not putting the toilet seat down, we have been working with him on putting the seat down and we will continue to work with him on such things..."
"Secondly mam, HE IS HANDICAPPED...(I did raise my voice on this one)....in fact in the eyes of the state he considered Severely handicapped..."
"He has Autism...I don't know if you know what that is, but if you'd like I would be more than happy to educate you on the disorder so that you may understand why my son who looks perfectly normal to you used the handicapped stall and left the toilet seat up... ALSO he used the Women's bathroom because he cannot be left on his own EVER, so I needed him to be with me in the bathroom..."
"SO the fact that he left the toilet seat up is something that he has yet to understand why it is wrong...and the fact that he used the handicapped stall, well I think you can figure that one out for yourself now that I had to explain this to you after you, an adult, yelled at an innocent 7 year old..."

She was silent and looking at Kannon while he peered around my back at her.

One last wave of thoughts came to me and I finished with them...
"You scared my son because of a toilet seat...did it ever cross your mind that maybe he IS handicapped and that's WHY he was using the handicapped stall, and maybe even WHY he left the seat up?"

Her face dropped, and my heart did too...
I have been faced with this so many times in public.
People either act out of ignorance or impulse and then once they are faced with the reality of it all...the fact that they acted like an a** to a little person who has NO control over any of this...well it is written all over their faces...they feel like crap, they feel embarrassed...as they should.
And once again, I am the one who feels terrible that I just raised my voice at a complete stranger...doing the very thing that she did to Kannon.

She obviously felt terrible, lowered her head and was speechless.
She managed to say that "I just need to continue working with him on the toilet seat, because it's just gross..."
And she walked away.

Kannon was still very sad and confused as to why he was being yelled at by this woman,
As she walked away he looked at me and said "EEEEWWW...mad mad princess"
I don't know about princess....
He then gave me a big hug and kissed my arm.
I knew right then I did the right thing by talking to her the way I did, Kannon knew it too.

I hope this lady learned something from all of this.
I hope she will think twice before judging or acting again.

Most of all, I wish she could know that even after all she did to Kannon he still called her a Princess.
After all, he only knows good.
Bless his heart.

And those who live every day with a difficult situation, I hope we try to be better people to the ignorance of human compassion and patience.
I hope we will not let our situations in life get the better of us, we cannot let what other people think or think they know affect our daily search for happiness.
So what if we have to be the better person sometimes...or ALL the time.
Live by example.

I'm o.k with how I reacted to this situation.
I'm just sad that it ever had to happen.
I hope it never happens again, and if it does I will continue to fight for the right thing.
I will always choose hope over anything.
I will always choose the light over the dark...only I can choose my happiness.

If we allow others to affect our lives emotionally then all the good people in this world will allow guilt, worry, and helplessness overcome them.

I say No Thank You princess.
Not today.
Not ever.

peace.

Friendship in 2D...for now

2011-04-07T12:42:00.000-07:00

There are moments I have experienced in my life because I live with Autism.
Moments that you could not make up...ones that don't even happen in the movies.

I see so much pain, struggle, solemnity within my child every day that sometimes I forget what I am seeing.
Part survival instincts, part denial, but overall something that Autism takes over within the little person standing in front of you.
Like it or not...it is truth.

Kannon is learning "cause and effect" concepts right now in therapy.

Scene: A picture in front of Kannon of a little boy crying because he fell down on the playground, his friends in the background looking on.
Therapist: "Kannon how does they boy feel?"
Kannon: "Sad"
Therapist: "Why does the boy feel sad?"
Kannon: "Because he fall"
Therapist: "What can he do to not feel sad anymore?"
Kannon: "Take a deep breath"
Therapist: "That's right, he can take a deep breath, now what can his friends do to help him?"
Kannon: "Say Sorry"

You get the point.
It is an exercise in understanding why? how? what?

This afternoon Kannon and I were sitting coloring at the table and we came across a picture of a boy in a magazine he found.
The boy was sitting alone on a playground with his hands on his face while all the kids in the background were playing, laughing...it was very similar to the one he saw earlier on.

Kannon comes over to my side of the table sits next to me and says "He's sad"
I say, "Oh, yes he is sad baby...why do you think he's so sad?"
Kannon: "He has no friends...he's sad."
Before I could get anything out he says to me: "Kannon no friends...I want friends"

After that he walked over to the couch and just sat there for about 10 minutes in silence.
He fiddled around with a sponge bob doll while he just sat.
Staring off into somewhere...his mind obviously running around with his emotions in a body that can't express any of it.
Solemnity.

I can't imagine not having friends in my life.
I think we take it all for granted sometimes.
We don't really know how lonely we would be if we couldn't pick up the phone and talk to someone...just to have someone smile with us, someone to share this world with even in the smallest of gestures or ways.
Friends keep us grounded, they care enough about us to share their energy and time on us.
For better or worse, a friend sometimes is the only one there in your corner.

After sitting for awhile, Kannon got up and sat down at the table and started to draw a picture.
After he was done he came up to me and showed me a beautiful picture he had drawn...
One of himself and another boy.
His friend.
For now.
He hung the picture up in his room right by his bed...
"My friend mamma...Kannon's friend" he says to me while I watch him tape this drawing up on his wall.

Whenever that friend comes along in Kannon's life he will be one lucky person for sure.
For Kannon has been waiting a long time for him.

And I can guarantee that he will never be taken for granted.

Another life lesson courtesy of Kannon and his beautiful ways in his own beautiful world...
Consider yourself lucky if you have friends...or even A friend.
Keep those drawings of them close to your heart...or as in Kannon's case on his wall...for now.

peace.

The "other" child

2011-04-04T11:42:00.000-07:00

I have had this nagging feeling for the past couple of weeks that I am just not doing something "right" in regards to raising my beautiful daughter...
Yes, I have another child besides my son who I blog about all the time.
Case in point.

The other day I had put on my blue shirt, blue Autism Speaks ribbon pin and we were headed out to the door to get into the car.
My daughter looks at me with tears in her eyes and says, "What about me mommy?"
"When will I get a day for you to wear a shirt?"
And...heart drops...mouth crinkles into frown and I pick her up and give her the biggest bear hug I could.

I wanted so much to run back into the house, put on a personalized t shirt with her picture on it, with a pin that says "I LOVE MY DAUGHTER...TOO"
Ha, so sad...but sometimes I feel as if I need to yell that at the top of my lungs to the world...and obviously to her.

I am still figuring this whole deal out.
I still don't know how to balance having a son with Autism, and then this other perfectly special, intelligent little girl who has some tough questions.
She never asks too much though...she never complains when we have to leave the park after 5 minutes because her brother threw a tantrum and we had to leave...she never rolls her eyes or makes fun of him when he can't do what other kids can...she doesn't ask why he still needs help dressing himself when she can dress herself just fine...she just doesn't.

But she does want to know why he is so damn special...and sometimes she "isn't"....at least in her eyes.
She doesn't understand why there is a team of people who are at our house every single day to work with Kannon...to play with Kannon...to take notes on Kannon...to watch Kannon's every move...and why she doesn't have this "special" treatment.

Of course she doesn't feel as special.
Who would when you look at it logistically.
Kids look at things in black and white...there is very little in between for them.
That comes with age and influence.
I must start filling in her gray areas before time passes me by...as we all know it does go by fast.
Before we know it our babies aren't babies anymore...and we are left with regrets...at least some of us are.

I already have so many regrets...and I try every day to put them behind me and move forward.
I must set an example for her.
She needs to see what true acceptance is.
She needs to know that life is what you make of it...and no one can make you feel bad about yourself...only you can do that.

She needs to go beyond being the "normal" child in all of this.

I try to show her in my own way how different and special she is.
I try to take her out on mommy/daughter outings so that just the two of us can hang out and talk...go shopping...walk around holding hands laughing...just being around each other without the constant demands Autism places on our every day life.

I think she enjoys our special time together.
I also know that the minute we get home, she runs to wherever Kannon is and sits down next to him.
After all, he is her big brother...he should be someone she can run to in her life.
I can only hope someday this can manifest to truth...
For they both rely on one another in ways they don't know about or understand yet.
They only feel love.

I think once I stop over thinking this whole thing and just allow my children to figure things out in their own way, I may just learn how to deal with it all.
They both seem very comfortable in their love for one another, and nothing in this world can be a better life lesson than that.

I need to accept that I don't have the right answers sometimes...even when I think I may need them.
I need to relearn a new kind of patience that Autism previously took away from me...only because I allowed it to.
Everything in life is given to you for you to learn from...to find balance within.

Just because I have 2 kids doesn't mean they balance each other out in my life.
It should mean that I need to find the balance within each of them individually for the benefit of us all.
At least that is what I am going with for now.

Oh...I am also going to make a personalized pink and red t shirt with her favorite things all over it so I can wear it on our next girl day together...I think that's definitely in order :)

peace.

April 2...Autism Awareness Day

2011-03-22T08:55:00.000-07:00

It should be more than a day, but I'll take it.

Those of us who write about living with Autism day after day try to bring awareness to the disorder in a way that humanity should see it...the good, the bad, the truth.

I respect all the people out there more than I could express for their every day battles with the disorder, their child, society, doctors...but most of all with themselves.

I see so much love within these people, so much spirit...it is truly inspiring.

So to them, to YOU...you are inspiring whether you know it or feel it.

You are the reason your child braves another day when they no longer can hold their own little heads up.

You are a voice for them when you look at their faces and read what they need...what they are fighting so hard to say to you...to the world...

You are their punching bag when their body releases itself...even though I know they hate that they can't stop hurting themselves, and you.

You are truly all they have at the end of the day.

We may not always know what to do or know what the "right" thing to do is, but we keep fighting for another day for our children.

We keep fighting for the chance that one day they may just walk up to us, quiet bodies, hold our hands, look us in the eye and say to us-

"Thank you...I Love you and know all that you did for me.

I watched you the whole time fight, cry, and smile at all my crossroads.

Thank you for not giving up on me...for loving me in the worst of times...and for always holding my hand and talking to me even though I could not talk to you.

Thank you."

If only one day I could hear those words, or any variation of them :)...I would have validation that it was all for something...something bigger than myself and Autism.

I would know what I already feel with all my heart and soul...just like all of you who fight for every moment.

That is what we should make humanity "aware" of...

That a day of recognizing this disorder is like an eternity of hopes, dreams, and trials for us who have and will live with it for the rest of our lives.

We sometimes have to fight for minutes...seconds with our kids...it is that intense.

So a day to raise awareness for Autism, I'll take it...

Let's use it wisely though.

Eventually as a society we need to transition into fighting for lives...for resources...a cure.

But for now, my praise, my heart and support goes out to all of you who fight every day for your child.

It is the parent(s) who should receive the awareness.

For without us, there will be no future hope for Autism, it is our love that drives this journey.

We can argue biomedical, causes, vaccinations, diets, etc. ALL day long if we wanted.

Let's not.

Let's try coming together and raising the level of compassion and love for these kids so that they may thrive in our society...so that they can grow up with examples of love around them, not debates.

And lastly, if you know someone who is raising a child with Autism, offer your support, love and praise...

You never know what a difference you might make if you try.

peace :)

In honor of this day I wanted to share a personal slideshow...if you want to watch it here it is...

The video at the end is very personal and something I haven't shared until now...

In hopes of a better understanding, compassion and acceptance.

Free slideshow generated with Smilebox

Different perspectives...same disorder

2011-03-15T08:48:00.000-07:00

http://www.autismsucksblog.com

If you have a chance check out this blog and read the post, "My Autism Mirror"

It was one of the more honest posts I have read about living with Autism.

It struck a nerve, in an honest way...in a way that sometimes people don't like sharing because it can be uncomfortable.

I thought it was a great post and one that is worthwhile to check out...

Bottom line is that Autism really does suck.

It really isn't fun, or glorious, or pretty.

It really does force us as parents/people to face ugly truths every single moment.

In fact most of the time it is so frustrating and terrible that if you didn't have both feet planted on the ground and your head on straight you just may loose all control of things.

I still maintain my perspective that Autism is a gift.

I have accepted it into my life and I have made it something I can learn from in a positive way.

That doesn't mean it is fun though.

It just means I CHOOSE to deal with it in my way, in my head, with what I have to offer.

My way may not work for others...and that is how it should be.

Some people get "annoyed" or frustrated when people write about Autism in a positive manner.

I have read through tons of different blogs and comments, etc.

It is a mixed bag of both sides and everything in between, but there is an underlying resentment that comes out from parents who live with Autism.

I will stand by my belief that you make your own world whatever you want it to be.

No we cannot control anything with Autism, but you can control how you react to it and how you feel at the end of the day...

There is a fine line between hating the disorder and the innocent little person with the disorder...

They cannot help any of what they do.

They simply are trapped inside their body that does what it wants when it wants and they make everything ten times more difficult than a "normal" child.

Most parents truly get this...others have a harder time accepting the difference.

And believe me, I am NOT judging.

We all do the best we can...period.

One parent stated that there is nothing beautiful about disabilities.

That they are socially "ugly"

They may be right...

And this is why we must educate people on the things that can be beautiful...

That can be looked at in a positive light.

I too have been shit on, literally and figuratively many times.

I too have gone a week with only 4 hours of sleep while maintaining a household and acceptable level of sanity on my own....no help.

I too have been bit, kicked, punched, and screamed at for hours.

I too have cried myself to sleep months at a time.

I too am divorced and trying to raise 2 kids, one who has Autism.

I too have to listen to other parents complain about their "normal" children doing things that would be a Fabulous, no unheard of day in my world...

The list goes on.

But here I am.

Still standing and still able to see the beauty in all of this.

And yes, like the post from another mother living with Autism I too judge myself every single day...and it never gets easier.

I am harder on myself than any society could ever be...we do that to ourselves.

As parents living with Autism we have no choice in doing so.

We all have our ways of coping.

It makes us who we are...and I can appreciate and learn from watching others.

I can only hope that each day MY way will get me out of bed and get me through the tough times...hopefully smiling...hopefully calm...hopefully hopeful for our future...

Hopeful that my love for Kannon will continue to grow so that my world can feel just a little smaller every day.

Hoping that "mirror" will get smaller and smaller until one day it is gone.

peace.

Hope rears its beautiful head...

2011-03-03T08:42:00.000-08:00

I have always wrote about hope...

I have always believed in it and surrounded my soul with it.

This week it has shown me why.

Kannon started school and every single day has woken up with the biggest smile and anticipation of his day.

He wants to go to school.

He loves it :)

He has helped me pack his lunch, and helps decide what he will wear...he likes to dress up in button down shirts...so fancy.

As a mother to a child with Autism I always have to believe in things that sometimes just aren't tangible.

I have to believe in things that are out of reach

This week I have reached a lot of those things, I have found feelings so great that I only thought to be daydreams.

Autism is tricky like that...it likes to keep you constantly reaching...constantly searching.

But at times like this I know Autism is a gift.

Kannon starting school has been such a gift.

He has found another part of himself that was previously buried...there, but buried.

It has surfaced now and it is so amazing to see his soul reaching out from inside.

He is truly reaching and growing...and it is without words that I can express the joy it brings to see him so happy.

There have been so many sleepless nights that I would hope this kind of happiness for Kannon.

I hoped and hoped that he would find these things inside himself...I just never knew what or how it would all come to be.

I know some people might think starting school and all this talk of hope and reaching and happiness is over the top, or "simple"...

BUT this is why I write about such things.

In a world of Autism the simple things are what absolutely rule our world...they make everything that much harder for us sometimes.

This is why I write about simple things...people who really want to understand this disorder must know that the simple things are sometimes impossible for families living with Autism.

Sometimes we never get to experience the "simple" things in life...

AND/YET sometimes with Autism the simple things are all that we do get to experience.

It is all about perspective and patience.

I feel so often the world buzzing around me so quickly sometimes...(perspective)

People in such a hurry to get from here to there...(patience)

Like this morning at school while we were waiting for his teacher to come meet the class...we all stand there against a wall by the school buses and wait.

And I look down at Kannon who is just watching it all, taking it all in.

Then he stops and wraps his arms around me and nestles his little head into my side...

"momma look at the flower...it's SO beautiful mamma"

"what flower baby?"

"over there mamma...in the grass..."

I search and search...and through all the running chaos of kids around me there it is.

20 feet away in the grass...a dandelion...alone...happy to be out in the sun...reaching up towards the sky for better things...

Some may never see it because it is after all a "weed"...

But against the vastness of it all, it is still a living, growing beautiful thing just reaching for what feels good...for what it knows to be life...

Hope.

Perspective.

Patience.

peace :)

The big day has come...

2011-02-21T08:34:00.000-08:00

Kannon is starting school this week.

He will be a first grader...he will be going to school 5 days a week, 6 hours a day.

After all the fear and nerves subside, I can more accurately reflect on the event...but for now I just wanted to share such a big moment in our lives.

For one, I will be releasing that motherly hold I have on my baby boy and allowing others to have his best interest in mind for most of the day....whaaat?!

You see, Kannon has become almost like an extension of myself.

I have held on to him for dear life for so many years...out of love, out of fear, out of necessity.

Now I must let go...at least a little bit...as parents do we ever let go?

Part of me feels great about it all.

How can I grow and accept everything unless I am willing to "try"

I must be open minded and put my faith in Kannon...

I know he needs this.

I know he will benefit from this.

It is just hard.

It is the beginning of a big leap of faith for my soul.

I will miss him.

I will miss hanging out with him in the morning and going on our morning walks together.

I will miss knowing that he is happy and "safe" here with me...

I will need to relearn myself once again

I will not have Kannon to lean on, he will not be a reason to not get personal things done.

I will have some personal time...

And honestly, it scares me.

But I welcome the challenge...

We all need challenges to move forward.

It has been my "turn" for so long...

I have had to take the first step on Kannon's behalf for years...and I have loved every minute of it.

But more importantly here, Kannon will finally be able to show how strong he really is.

How smart he is.

How wonderfully amazing and irresistibly funny he is...maybe even make some friends.

I know he will succeed in his new environment.

I am excited for my little man.

I will not hide behind my fears for him...

It is his turn now.

His turn.

peace:)

drum roll please...

2011-02-15T22:48:00.001-08:00

I feel as if these should define so many of my life moments.

Drum roll please...mostly ending with a bad collaboration of clashing symbols...all off tune

Anyways... we are done, we have completed Kannon's IEP...( crowd hissing victory cries in the background...)

IEP behind us...at least for a year :) THEN, again we go...

And by that, I mean the tests...the percentages, the negotiations.

The absolute draining of a mothers source of energy, hope, and drive...granted we can refuel really freakin' fast :)

For those of you who don't know, an IEP stands for Individualized Education Program, which is mandated by the Individuals with Disabilities Education Act (IDEA)

Basically, if you have a child who has "special needs" aka special education status, then you MUST go through a series of evaluations and standardized testing by the school district in your area to determine a few things.

SO...they test and they test and they determine first of all in their eyes if your child is even eligible for services....aka do they have a "disability" of some sort.

(mind you, I am NO legal expert nor do I care to go into great detail how this all technically works...just trying to get the basic point across before you fall asleep...)

So, YES my son qualifies for services, and YES he falls onto ALL the areas that are "typically" Autistic/Autism relevant....blah, blah, blah...

Here I am 11 o clock at night staring at the 2" pile of papers in front of me.

After all the whirlwind of testing and meetings and talking and thinking....

Here they are.

Honestly, I have been crying over these damn reports for the past hour, but whatever...please NO sympathy here...part of the deal.

So, the IEP...a legally binding document which could drive the future education of my son...

AND a whole lot of test results from the school districts team of professionals.

LOVE these damn things.

I love seeing how severely delayed my son is.

How he is in the third percentile for his age group in Pattern Recognition, and how he shows a "lack of understanding" and" exposure to general problem solving opportunities".

Here you go, here's a taste of what parents get to read about their babies with Autism...

"According to assessment results, Kannon is functioning at Piaget's Preoperational/Preconceptual Thought Stage, individuals are able to attach labels to objects and to use language to mediate behavior. They engage in associative reasoning and have only a rudimentary understanding of cause and effect relationships."

"Kannon is able to engage in an activity with a peer for an average of 3-5 minutes with 1-2 prompts form an adult in 72% of opportunities"

"Kannon's overall level of achievement is very low"

"Kannon is manding 49 times per hour and targeting 3 manding frames"

"Kannon was unable to perform this task in the required environment"

THIS is what defines our children to the public.

This is what we, as parents get as feedback as to "how our child is doing..."

Uh huh.

Numbers, testing, observation...constant tracking of behaviors and percentages...

What about now.

What about me sitting here alone with these reports seeing how my 7 year old is functioning at a 4 year old level...and in some areas a 3 year old.

How "they" feel he is "unable" to do SO many things...granted it is their job and it is not personal...but this is not about that.

What about the sweet boy that makes sure I am happy all the time..."mamma you happy?!"

What about the boy who doesn't push kids on the playground and is always smiling...

What about the boy who in my humble opinion lights up a room with his sheer joy for life.

What about the boy who has fought so hard for EVERY SINGLE WORD that comes out of his little mouth...

Again, nothing personal...but what in life isn't?

Where is he in all this paperwork?

I can't find him.

Or maybe I just don't want to find him in all of this.

I am writing this mainly because people need to know the dark times in all of this.

The RAW emotion and truth that comes along with it all.

The reality that one day I can be so excited for Kannon that he recognized the number 5, then the next moment be shot down by an institution that tests him in a way that his brain cannot comprehend...yet if presented in a way his brain understands he can get it.

Make sense??

To some mothers I know I am preaching to the choir here...

And I don't care how strong, positive, hopeful your soul is...

These moments will never be easy.

The constant fighting.

The constant fight for a place in this world for your child...for yourself.

The ever present hope in some sort of system that will work for you and your child's benefit.

So to wrap it all up...and I may be rambling on here...

After making my last phone call for the day, my last inquiry on Kannon's behalf, my last paper read...

I go to pick up my baby girl at school...which is such a joyful time for me....a time of "normalcy" if that is even a word or concept.

I am driving down my street and there he is...our neighbor who is in his 40's, who also has Autism.

In my past posts I have mentioned him.

He is attempting to take the trash cans out to the curb with his fathers assistance.

His pants are down below his butt, hanes showing, and no shoes on.

His backpack is half on and half on his head...and he is dragging the trash can on it's side to the curb.

Most people would either laugh...make fun of him...or just ignore it out of being uncomfortable with the sight.

I slowed down, saw this beautiful human being who with his salt and pepper hair resembled an English professor more than a "special person" with his pants sagging, backpack covering his face....and I smiled at him, a warm teary eyed smile.

For this could be Kannon.

It is SO many people out there.

They too have piles and piles of reports on them too....

But I know behind it all there is someone who loves them more than anything.

And, there also must be a society who accepts them.

Because for **ck sake it takes a second to smile, but SO much more energy to judge and frown.

There has to be an environment for these kids/adults outside of the testing and judgement.

There has to be a human factor involved here...and not just from the parents...and not just for Autism.

For everyone.

Every soul deserves to be loved just as it is...

This is what we must hold true.

I have to believe it.

I must believe it.

Human nature is all about perspective, not numbers and percentages.

Change your perspective if in any way it is negative...

Plant the seed, and it will grow...

peace.

Letter to my son...

2011-02-03T12:01:00.000-08:00

Dear Kannon,

I am so proud of you.

I have watched you grow into an amazing little man, thank you for choosing this path in your life so that we could do this together.

You have changed my life and my heart forever.

I remember when you started your ABA therapy.

You were 5 years old, and you had a vocabulary of about 10 words..."juice...no...park...car...dog..."

If you needed anything you would either attempt to get it yourself or physically grab me and drag me to the item you wanted.

You couldn't put your own shoes on, you couldn't get dressed by yourself, and you were still in diapers.

Look at you now...

You can talk using 4-5 words in a sentence...."Mamma, I want food please"..."Can we go to park"..."Goodnite mamma"...

I love that you can finally call me something..."mamma"

I also love that you can use the potty by yourself now :) What an accomplishment for you, as you struggled for a long time with that one...no more diapers!

I remember how scary and difficult it was for you to have strange people come into our home and demand things of you...all of course for your benefit, but you had no idea what their intentions were.

They wanted you to sit down for 15 minutes at a time, which was very hard for you to sit at all...and after sitting you down they would work you for 2-3 hours at a time, for 4-7 hours a day, 5 days a week.

It was like a job...you were a 5 year old with a job...

You had the most difficult and important job...fighting for your life, fighting to get through to yourself.

I remember how often you would cry yourself to sleep at night, and sometimes not sleep at all due to the stresses of your everyday routine.

You simply could not process what in the hell was going on in your own mind...why you could not talk, why everything felt so fuzzy and out of control...at least that is my interpretation of it all...

I remember laying next to you trying to calm you down while you would kick and cry and hit me out of frustration. I hated seeing you so upset...I hated seeing the bite marks on your arm and the bruises everywhere.

You would do this every single night...you would only sleep 2 hours or so, sometimes not at all...and you would get up and work all day the next day.

I know this lasted for about 7 months, and that it felt like our home was a prison...no sleep, no happiness, just getting by day by day...just work, work, work.

What you have to know by now though is that it wasn't your fault.

You have Autism.

So this means you have to work harder than most people do for the simple things.

You have to fight every day, just to get through to yourself.

You had to make that transition into the "rest of your life" work...

Look at you now baby boy...

These "strangers" are now your friends.

They love you and you them.

You can sit down now for 15, even 20 minutes and work peacefully.

You still have to do it every day for 4-7 hours a day, but now you laugh more, your focus is there, you have an intention within you.

Through working with your therapists I have seen the most amazing creative person come out of you...your drawings, your sense of space and proportion are simply fabulous.

You can express yourself now through different mediums...it's so great to see all of this happening for you.

You sleep soundly at night now (for the most part :) )

You aren't restless. You aren't angry.

You are happy.

The bite marks are gone...so are the bruises.

Your tears are now sweat because of how much running around and playing that you do.

You are getting through to yourself slowly...you really are.

You are able to enjoy the little things that used to burden you.

You can tell me that you are mad or sad and I can cry with you now...not for you.

I can look into those soulful eyes of yours and see some clarity.

I can see that you are looking back at me.

You can wipe my tears away now...instead of me always having to wipe yours.

You have a vocabulary now that is unbelievable...

I would guess you know and can label about 150 things, maybe more :)

You can look at a tree and identify what it is.

You can tell me that the balloon is blue, that the dog is brown, and that your name is Kannon.

You can even count to 20, and you know more colors than I do...how about that :)

I am so proud of you.

You are really doing it baby...you are breaking through

You are letting others help you...but what you need to know is this:

You are helping everyone around you in ways you may not know...

You are changing our hearts...our minds...our perspectives on life.

You have shown us that things are not always what they may seem.

You have shown us just how beautiful a soul is.

You have shown what hard work can do...hard life work.

Complexity, humor, tenderness, consideration, love, hope and strength.

This is you...in my eyes.

In my eyes, you are growing up to be quite the amazing human being...the best I have ever met.

I am so proud of you.

Someday when you can read this, I hope you can look back and remember your journey with a smile and with pride.

I hope that simply someday you can read...that you and I can talk...that all the times I have talked to you late at night after our long days together you can tell me you understood exactly what I was saying...that all our tears were worth it.

Lastly, I hope that even when I am not on this earth anymore you will know with every part of you how amazing you are...that everything you are today is because of you and your hard work, and believe me you worked so hard for it.

AND...how you made my life better...not just better Kannon, you truly MADE my life.

Love always :)

your mamma

Western Education...

2011-01-26T12:02:00.000-08:00

After watching Obama's speech last night, the one thing that stuck out on my mind was his emphasis on Western Education.

The need for the West to surpass everyone by increasing our education status...by excelling in Math, Science and Engineering.

He also encouraged kids to get into teaching if they really want to change the world...I thought that was great.

In my world, in many of our world's we are just looking for acceptance.

We are looking for the tools to get through the day.

We are looking to heal ourselves and our future.

We need something with a little more substance.

We need someone to assure us that they are interested in healing the human soul, not just our pocketbooks.

I live in Orange County California, I see rich people every single day.

I mingle among them when I am standing in line at the grocery store, or on the treadmill next to me at the gym.

What I don't see enough of is people reaching out to each other.

I don't see enough people smiling or saying "excuse me" or "thank you".

I don't see people looking beyond their own nose to the person right next to them...

Another "fellow American"

There was a lot of mention in the President's speech about the Internet.

I found this interesting.

I say thank goodness for the Internet.

This allows people to connect on a level that is becoming apparently obsolete in public or in person.

It allows a superficial almost allowance to seek truth, acceptance, and platform to be heard.

I am obviously grateful for the internet so that I can write my blog, read other blogs and find myself feeling not so alone at the end of the day in my journey with Autism...

What I am not grateful for though is that it seems to be replacing real human interaction and action.

I read so many of my fellow blogger posts, and it just kills me that across the board we cannot find relief...

We cannot find support in our communities, in our schools, in our own circle of friends.

We are the pioneers of this disorder.

We must rise above the pain, the unbearable days, the lack of resources for our children and we must survive.

It is so important that we continue to find support and resources for Autism.

As most of us know it receives the least amount of money of all childhood diseases...yet it has the highest numbers. Obviously that makes NO sense.

I know I am preaching to the choir here.

I just wanted to pat you all on the back and say job well done.

You are the ones who are paving the way for future families and children.

In the mess of all that it can be, I hope you all know that it will get better.

If we can raise our children with Autism, then we can hope for a better tomorrow.

If we can still smile at the end of our helpless, lackluster, tantrum filled, head butted, pooped on, judged by others, weird looks, echoic cartoon conversation with no thank yous or hug days, then MY GOD ANYONE can find the hope in a better tomorrow :)

Western Education?

What about getting the Westerners to "like" each other first...and that means everyone.

I don't see Math helping out a lot in the issue of human compassion and acceptance...

BUT this is just my opinion.

I would just like to hear my son tell me he loves me and mean it...to have a normal conversation about anything...anything at all.

To be able to put my faith in others and know that if he was not in my care he wouldn't be judged or gave up on...that people would smile at him and mean it.

Way more than I would like to see him solve 2+2

Don't know why this rubbed me the wrong way so much, I just see so much human indignities and hurt every day that sometimes the logical answer to ME is not always the right one.

And let's not even get started on the topic of Autism and "logic"...

Maybe another day.

peace :)

Fairy tales

2011-01-21T12:10:00.000-08:00

I wanted to share some of Kannon's ART with you all :)

I have found out that most children with Autism are very talented when it comes to drawing, especially if they are non verbal.

I like to think this is one of the ways they can express what's inside their souls to us...

It is also simply a way for them to communicate with us when they don't have the words.

I forget sometimes as an adult why I loved princess fairy tales so much as a child.

It was an escape, it was beautiful, everything was so magical...

Kannon, as I have mentioned before LOVES princesses, castles, etc.

It is one if his favorite things to draw.

Then as we grow up we somehow forget this magical world of fairy tales.

We forget how it feels to be a "princess" or a "hero"

We get too wrapped up in the daily grind, in finding ourselves.

Funny thing is I think along the way we actually tend to loose ourselves.

Subconsciously I believe this is one of the reasons we have children, so that we can be reminded of this magic that only a child can believe in...

So that we can put a bed sheet around our necks and run around with our paper towel roll swords and fight evil.

We are meant to feel like princesses, to fight like kings, to see beauty and innocence in all that is our world...

To realize there are bad people out there, but we will always triumph over them...

That we can live happily ever after :)

Just a thought,

peace:)

my safe place

2011-01-19T14:12:00.001-08:00

We all need "safe places" in our lives.

Not only physically, but emotionally.

One of my physical safe places is Target.

I can go there with Kannon without many safety issues, as he knows the layout of the store and I pretty much have his routine down as to where he will go in the store.

As other mothers know, these kiddos like routine, and they are almost methodical about their routes.

That being said, if I loose sight of Kannon for a minute, I know the general area of where he will be...and that is very comforting for me.

Some may be shaking their heads in disgust as to the fact that I will admit I loose sight of Kannon every now and then.

HA.

Walk a day in my shoes before passing judgement.

Most of the time I have a kung fu grip and eye on Kannon.

I know where he is at all times, and never take too long to look at something in a store, because I know I don't have that time...he will have run off.

As some know, it is damn near impossible to do any sort of grocery/shopping with these kiddos...so most of the time I only take him if I need a few things.

The other day I was checking out and Kannon was running in circles around me, then back and forth from me to the wall. The lady behind me in line was staring in obvious disapproval she even shook her head and sighed... I have learned not to care about such responses anymore.

In fact, I was so caught up in the simple beauty of Kannon being so happy that I just stood there and smiled at him.

No mother can resist their child's smile and laugh.

He stopped and saw that I was smiling, came up to me and kissed my chest then gave me a quick hug and took off full speed again.

These moments are so important in the public letting down their walls of ignorance.

They need to see the love.

They need to realize these kids are so diverse, yet still just kids who need love too.

Even if Kannon didn't stop to give me a kiss and hug, I hope the simple fact that I was smiling at my child and not yelling at him sent a message.

He wasn't hurting anyone...he wasn't running into people or causing anyone any inconveniences...so there was no need to stop him in my mind.

Most people look past these moments and simply just go straight to judgement.

They look at the hand flapping, head hitting, verbal ticks and yells, shoes on the wrong feet, pants on backwards and make their decision about "what's really going on"...

As a mother to Kannon I have to call their "bullshit", whether it be with words or my actions.

I prefer using actions.

He is a human being.

Not a circus act.

As I was walking out another lady stopped me who I hadn't noticed earlier.

She said "You have an adorable son, he obviously loves you"

Love is universal and undeniable when evident.

We all need our safe places.

Inside my children's love is my safest place of all...

We are all mothers at the end of the day.

It is not what defines us, but our love is powerful and what will change worlds...and hopefully break down walls.

peace :)

2011-01-17T18:52:00.000-08:00

I couldn't resist writing on the day that celebrates one of the world's most influential humans :)

Also, I feel he stands for all that I think is beautiful and necessary for humankind to flourish.

So that being said, Happy Martin Luther King day.

It is pretty unbelievable the messages he had, the hope he felt for mankind, and the ability to communicate his genius so effectively.

I also saw a bumper sticker today that struck me as quite beautiful...

"Be the change that you want to see in the world"

I am jumping all over the place a bit, but I really feel that change is so good sometimes.

Sometimes, it is necessary to grow.

Sometimes, it can save your life.

Sometimes change can be the scariest thing in the world, yet bring such peace to the soul.

Change yourself, change your situation, your routine...

I remember when I was going through my really dark times in life it was all because of "change"

The difference that makes ALL the difference in having change be a positive thing is this...

When you choose to change, it will be a positive.

When life changes without you expecting it to is when it can really mess you up.

But, it will happen and sometimes whether you realize it or not life is changing because of you wanting change.

I'm not trying to go in circles here, just pointing out a perspective that I would've found helpful when I was going through everything in my past.

So, let your emotions guide you...

Life will consistently change on you, but maybe it is for reasons you intended it to.

Intend that you will be happy, that you will change your life for the highest good.

Know that you deserve happiness, success and peace...know that we are all here for a reason.

Listen to messages like MLK's.

"Every man must decide whether he will walk in the light of creative altruism or in the darkness of destructive selfishness. "

"Faith is taking the first step even when you don't see the whole staircase. "

"In the End, we will remember not the words of our enemies, but the silence of our friends. "

~Martin Luther King, Jr.

peace :)

On the upside...Xmas in January?!

2011-01-12T14:28:00.000-08:00

So, whether you may or may not know sometimes kiddos with Autism perseverate on things.

a. Uncontrollable repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder.

b. The tendency to continue or repeat an act or activity after the cessation of the original stimulus.

So, this being said Kannon believes with all his might and brain that it is still Christmas, and that Santa will be coming back any day now...with more presents.

He has re wrapped almost all the presents he received for Christmas along with most of the DVD's in the house and a few random books...he feels that if he can stay in the Christmas spirit and keep gifts around then the big buy should follow suit.

The upside is that he used up the remaining wrapping paper, so no need to wonder if I should keep it for next year or not...and there are little gifts laying all over the house, and who doesn't like to see gifts :)

The downside is trying to explain to him that Santa will not be coming anytime soon...especially since the concept of time is not something Kannon grasps quite yet.

Santa so far has been vacationing after working so hard...flying around to other parts of the world...and last but not least, Santa is sleeping for the next 6 or 7 months to recover from all his Christmas activities.

Kannon hasn't bought any of this, so we are still wrapping presents and keeping vigil for Santa.

It has been nice, I have received my CSI DVD set all over again, some dirty socks, a princess pop up book, and my old toothpaste box with legos inside (it did make for a nice rattling sound)

Like I've always said, Autism can be a wonderful gift...

I just never knew it to be in literal form until now :)

peace

Black and White

2011-01-07T12:35:00.000-08:00

Clearly there are differences with Kannon and other children.

Clearly these differences are obvious and sometimes painful to accept as a parent.

I wonder if Kannon sees the differences...if he feels them.

If it really matters in his journey...

It slapped me in the face today however after our first of many assessments we have to do for Kannon in order for him to attend public school.

Yes, when you have a child with "special needs" aka special education you must undergo a series of tests administered by the school psychologist, speech pathologist and education specialist. In total, he will have about 7-8 assessments/meetings with them lasting from 2-3 hours each session.

I went in with an open mind, hoping for the best.

I hoped that the last year of Kannon's hard work in therapy would help him to be able to understand these "tests" and for him to be able to sit still for the 2 hour session.

Needless to say, he did last the two hours, but did only about 20 minutes of real testing.

He cried and screamed for the rest of the time, hit me about 20 times, bit my arm and leg, and head butted me in front of the very nice education specialist...this is when I calmly stood up, asked for 5 minutes and went out to the breezeway and cried.

I put myself back together and went back in the room where Kannon had laid down on the floor in the corner and was crying covering his head...we decided to go for a walk at this point to calm him down...

I was sad, frustrated, and damn it that head butt really made my eyes sting.

I can't accept that after almost 3 years of intense therapy this is where we are.

Kannon could not point out a cow...he could not count to 3...and he could/would not write his name down.

Forget about being able to read...

The frustrating part is that I have seen him do all of this...even more.

He really is such a smart kid.

SO, we could not finish the testing for today, and will have to do it another day in hopes he will be able to complete the series of tests...for without a proper assessment Kannon won't be placed in the right classroom.

It is times like this when as I said earlier I feel a big slap in the face of where Kannon really is in the scheme of things.

The thing with Autism is that it tricks you.

One day will be full of promise, peace, and wonderful achievements...full of hugs, kisses and laughter.

The next will be one filled with tears, screams, bites and a blank faced child.

Then the next you will have a screaming, hitting fit followed by a 2 hour quite child sitting at the table coloring.

There is never consistency.

It is not black and white...in fact I can't even begin to label or define Autism and its behaviors.

There is no "this or that", there is no accurate chart or scale that could measure really anything involved with Autism...

We go for another walk outside after I called the meeting to an end...he clearly was not in any place to sit down for a minute longer, plus my head was hurting, no throbbing.

It was recess time so all the kids were out playing...and Kannon just stopped in his tracks.

He looked on at the kids running around laughing, screaming, chasing one another...

And then, as if major contemplation and happiness overcame his soul...he smiled.

A big toothy smile and continued to watch the kids.

In my mind I couldn't help put fantasize that he was imagining himself in their shoes...

Wanting to be a part of it all, seeing how great this environment could really be.

My heart tells me that's what he was thinking.

Then after a minute or so, he turned to me and said "movie please" and we left.

Every mother hopes their child will be happy and live a normal life...go to school, have friends, excel in studies, create wonderful things, explore the world, have a family of their own, be good people, etc...

I too hope these things for Kannon.

After moments like today, I just hope that Kannon is happy...that he can see beyond the black and white of it all...that there is many shades of grey that lead to color in his mind...in his world.

peace :)

opening new doors...

2011-01-01T18:56:00.000-08:00

Happy New Years everyone!

I have never been one for New Years resolutions, but I do believe in feeling great about starting a whole new year...full of possibilities and hope :)

I also believe in second chances, and in hoping for wonderful things to come your way.

I also believe that people can change if they want to...change behaviors mostly.

We can change the way we feel about ourselves, and we can change how we react to situations and to challenges...change our behavior.

Changing behaviors is really the root of ABA therapy, which is what Kannon goes through every single day...so I must put my faith in this system.

I must believe that behaviors can be modified for the benefit of a better quality of life.

I once read that for us to move forward we must let go of beliefs, thoughts or anything that no longer serves your needs....your right to move forward in life.

It's almost like cleaning house, it always feels good to have a clean home.

I like cleaning my emotional "home", it feels good to let go of old things to make room for the new.

New possibilities, new hopes, new chances at changing our relationships with those in our lives...and all for the better.

There is always room to be better, even if you have done no wrong...we can always be better people.

We also must always remember why we are where we are, and that due to our own decisions we got there.

It holds us accountable, which is so important in life.

We are where we are because of our own decisions and actions...until we accept that we will restrict our own growth and momentum...again there is always room to be better :)

I find it exciting when I think of the possibilities for this lifetime...

One of the reasons I started this blog was to help those who felt alone, who felt outside of the "mainstream" of life due to Autism.

Ironically, I find it liberating to think out of the mainstream...

It allows emotional freedom, critical yet necessary introspection, and a sort of isolation that can allow growth unlike anything else.

Autism has absolutely opened up so many doors in my soul.

I hope you all find your inspiration that opens the doors in your soul...and that you enjoy the ride.

Happy 2011, I look forward to another year full of blogging my heart out to those of you who care enough to read...and listen.

peace :)

defining days

2010-12-22T19:32:00.000-08:00

Patience: good-natured tolerance of delay or incompetence

Incompetence: lack of physical or intellectual ability or qualifications

:a condition that is the inspiration for an activity or situation; "necessity is the mother of invention"

To be the best mother I can be to Kannon I must have above anything in this world, patience.

I must be patient with his behaviors.

I must be patient with his defiance.

I must be patient with the big picture here....that Kannon has little to no control over aspects of his life.

This all makes a recipe for such an opportunity.

My last post touched base on a bad day...one of many.

Today I wanted to share the outcome of such days.

Introspection: the contemplation of your own thoughts and desires and conduct

So this is where I am...today....not in a month.

I have realized the path I have chosen in this life is not an easy one.

I know that I chose Kannon, and he chose me.

I love that he trusted me enough to put his life in my hands.

I am frustrated that I cannot be on my "A" game every day.

I understand that without struggle and raw emotion I will not grow.

I like the definition I found of "mother"...:a condition that is the inspiration for an activity or situation; "necessity is the mother of invention"

I like to think of myself as a "condition", rather than something so concrete...at least in societies mind(s).

I like to know that I can affect someone...that I can be the inspiration for something of greater good.

I like to think that a true "mother" is by definition someone she has become out of inspiration...

I like to think of it all as one big constant circle of evolution...whether it be emotional or physical, we must evolve.

I think inspiration can come from almost anything...even a really bad day...when you pick yourself back up....

Out of necessity.

peace:)

Bad days...we all have them.

2010-12-08T20:14:00.000-08:00

One of the great, yet unexpected perks of writing this blog is all the positive and loving feedback I get....

I have been told how inspiring I am, how great of a mother I am...just so many flattering and thoughtful comments.

I am obviously grateful and flattered by it all, and today I wanted to share a side of me that may not be so flattering.

Lately Kannon has been beyond Thunder dome so to speak....he has absolutely been behaving out of control and most of the time beyond my patience levels.

I don't have the slightest clue why his behaviors have been sky high, but I can tell you I have really had to dig deeper than usual lately.

I have to constantly remind myself of all I stand for...

I have found myself really tired, completely exhausted, and sometimes loosing my temper with him.

I really try not to raise my voice at Kannon, but sometimes (especially lately) there really is no other choice.

I hate that I feel so impatient sometimes.

I hate that I cannot get through to my son.

I HATE that even when I raise my voice at him he looks at me with no reaction and continues to do what he is doing.

I hate that sometimes I just want to shake all of this out of him...make him O.K.

I never knows if he is ever really hearing me.

I never know what he is thinking, and if he knows what is truly going on around him.

I often find myself feeling as if I am talking to myself all day...because honestly that is what it feels like at times.

The other night after hours and hours of tantrums I was sitting at the kitchen counter on my computer looking at the news, and Kannon was in his usual hyper active mode....aka, not being able to sit down for a minute, talking non stop, yelling, not listening, etc...

He had asked me about 30 times to "look please" while he was jumping on the couch throwing his buzz lightyear around in the air, and quite frankly after looking for the first 5 times I was over it.

SO, he reverted to asking our dog, Koda to "look please".

Does he know that he is talking to a sleeping dog?

Or let's be honest...that he is talking to a DOG.

At first I thought it was cute.

Kannon just wanted a friend to interact with...to talk to...that is all he really ever wants.

Then, I found myself getting sad for him.

He is talking to a dog.

As I write this it brings tears to my eyes...my baby boy talks to our dog asking her to play with him...to be his friend.

It is so sad.

I am SO tired of being sad for my child.

His disorder constantly pulls at every single heart string I have and it is exhausting.

It is so exhausting to have so much empathy and compassion for someone that it literally consumes your entire being....everything. My thoughts, my actions, my well being.

Autism has consumed me.

As I have mentioned in the past, the looks, the stares, the constant need to watch Kannon...I am tired of it right now...truly exhausted.

The public affect it has on ones soul to raise a child with Autism...it is something I can't explain in words.

It is like having a Tasmanian devil in a fine china store.

A beautiful little person always with you, always needing your attention, always in your head.

You have to be their best friend, their advocate, their parent, their punching bag, even their thought process.

I am tired of Autism right now.

It has pushed me beyond my head...beyond my abilities.

I know I will pick myself back up and continue on with grace and joy, but I will allow myself times like this too...times that are perfectly imperfect in this life.

Times that I hope are pushing me beyond my own worldly knowledge of why, what and how?

Times that I hope will push the interior of my soul and make it that much bigger for Kannon, because god knows...he needs it.

peace

Love just is...possible.

2010-11-28T20:17:00.000-08:00

Today was my late father's birthday.

He would've been 69.

I find the more time passes it gets easier without him physically being here.

I still miss his voice, support, and love though...that will never fade.

He is and always will be my only father, and I am thankful I had him the short time I did.

We all only have 1's on our lives....1 father, 1 mother, etc.

However, lately I was reminded you can still have people care for you just as much if not more than your 1's.

I have a small family, I cherish them and my time with them...you have to when you have only a handful of family.

I had the chance to go home for Thanksgiving, and I was shown just how others can care for you as if they were your father, mother, etc...

I was reminded how cared for I am on different levels...and it was a nice reminder of human nature.

Just because someone is not your blood, doesn't mean you can't feel deeply for them.

I was reminded of what I feel I am always trying to say...we are all just people wanting love, respect, and care.

All of these emotions can come to you through people no matter what their relation to you.

When you stop being selfish and start loving...open your heart to others...that is when you really can receive gifts in life.

If you choose to listen, love, and receive all that is out there for you you may be surprised by the results.

We are all blessed, and we are all capable of finding love in unexpected places.

I found more love in my family than I knew existed...I bet most people could do the same if you choose to.

Life, love, and compassion is always around us.

We must let down our insecurities, preconceived notions, and start allowing.

Kannon is not my peer....nor my teacher in socially accepted terms...however, in all truth he has taught me more than any human being.

When I let myself allow other life possibilities is when my life became possible.

peace :)

p.s. Happy Birthday Dad...miss you, love you, hope you are proud of where I am.

Giving thanks

2010-11-19T13:48:00.000-08:00

I am thankful for this little girl :)

She loves deeply just like me.

One of my favorite things in life is when she and I cuddle up together and read books...she is the best cuddle bug.

She sits down and listens to Kannon when no one else will.

Thank you for my little sassy angel :)

I am thankful for this little man :)

He has been the most challenging gift life has given me.

He brings me to tears and touches my soul like no other.

His smile is all I need to have a good moment.

Thank you for my little guy :)

I am thankful for this guy... :)

He has always filled my heart with laughter and fun.

He loves and respects my kids, just as they do him...what more could I ask for?

He loves making me smile...and I love that.

Thank you for Ky.

I hope everyone takes a second to give thanks to those who touch our lives.

I have many more people I am thankful for...just didn't have their pictures on hand :)

We all need each other, we all learn from one another, we are all just human beings who deserve the same amount of love and respect.

Happy Thanksgiving everyone!!!

May you all eat lots, smile and laugh a lot, and never take your loved ones for granted...

peace :)

just a thought...

2010-11-16T12:46:00.000-08:00

The world is such a huge place...I know I am a genius for stating such a fact.

I just hope all people realize how truly powerful we are.

Our thoughts, our actions, our words....they can absolutely make the world a better place.

I try for a few minutes each day to state my intentions...

I always make intentions to be a better, more patient and peaceful person.

I make an intention for the purity and health of the earth...I also make intentions to open my life up to new possibilities.

We must remind ourselves every single day why we are here....

We are all powerful creative beings that have the power to change our lives.

We can absolutely change things just by the way we think and talk to ourselves, to each other...

We should not underestimate ourselves.

I see Kannon make amazing things happen every single day.

He creates worlds, understanding, peace...he is his own creator.

He looks at "problems" as gifts instead.

He takes on everything with stride and with beauty.

We can absolutely create our own language... a new language for ourselves.

A more positive look on life...change the negative to a positive, stop inviting in bad thoughts.

Stop living life like there is constantly a deadline to meet.

Slow down a bit...reflect, enjoy, take life in...

Think good, say good, do good.

Another life lesson compliments of Kannon.

Just a thought for the day...

peace :)

2010-11-08T14:10:00.000-08:00

Kannon has always had a great sense of humor...adventure...spontaneity.

People sometimes ask if kids with Autism can have a sense of humor...a personality...

Well here is a little story for you, maybe this will help answer that.

His recent aversion (thanks to Autism :)) is his clothing, specifically dirty clothing.

If he gets a drop of water on his shirt, pants or underwear they are coming off. God forbid spaghetti sauce or dirt gets on him...

We were in Big Lots this afternoon strolling through the Christmas aisles of boxes, wrapping paper, and lights.

I found myself so happy...I LOVE Christmas. I love the decorations, smells, colors, weather...everything.

I was drifting off into a magical wonderland of joy and tinsel when all of a sudden I realize Kannon has run into a different aisle.

I hear him jibber jabbering to himself and when I walk around the corner into a few aisles over there is my beautiful stalky boy with his shirt off and attempting to put a princess dress on over his rather large head...

He was stuck and not particularly pleased that he was stuck in the pink satin dress with white bows everywhere.

I had to stop a moment and just laugh...

Then we had to regroup, take the princess dress off and attempt to find his discarded shirt.

Now I have no idea if the "no shirt, no shoes" policy applies to children, but Big Lots apparently is fairly understanding in this case.

We had an employee helping us look for his shirt, and eventually a nice old lady pitched in too.

All the while Kannon was being tugged around by one red faced smiling mother without his shirt on.

We eventually found the shirt in the box aisle, and when I looked down to put it on him.....

Wouldn't you know it he had managed to snag 2 rolls of masking tape, a barbie doll, some green ribbon, a pack of Christmas cards, and a Santa hat....oh and we had to buy the pink princess dress since his girlish figure managed to rip the entire backside.

That's my boy :)

p.s. the very sweet elderly lady who was helping us look for Kannon's shirt did eventually ask, "does your son talk, or is he always this well behaved?"

peace :)

What Autism has taught me this year...

2010-10-25T15:06:00.000-07:00

I would've done this for every year, but too late:)

I was inspired by my good friends blog to list the things I've learned over this year...it was a great year :)

1. You can find beauty in everything and everyone

2. Never judge someone or a situation, you really have NO clue what their life is like

3. Smiling is the best thing you can do for yourself and those you love

4. Patience is a virtue

5. I have qualities in me I never knew were there

6. The human brain is a magical, amazing thing, we may never understand it

7. I really do love being a mom

8. I am a good person

9. I love my friends more each day

10. Sweatpants are a saving grace

11. As far as life obstacles for humans, this is one of the big ones in my book

12. Most people don't know anything about Autism

13. What people think they know about Autism is for the most part incorrect, or purely scientific data they repeat from news stories

14. It is not worth loosing your temper over small things...or anything really

15. Life is how you decide to look at it

16. Every day is full of choices

17. Never assume anything

18. Don't take anything personally

19. Go into every situation open minded and ready to receive anything

20. Everyone deserves respect

21. Listen before you act

22. Love, in its purest form, is the most life changing thing that can happen to you if you let it

peace :)

2010-10-11T20:00:00.000-07:00

I thought I would have learned this lesson a little earlier considering Kannon has great difficulty expressing himself using words.

I have found that people say so much more with their actions, than with their words.

I have found words to be very tricky actually...

Words involve a lot of factors along with them...tone...intonation....volume...etc...

Either what we are hearing is wrong, or interpreted incorrectly, but usually I find that we mis- communicate with our loved ones every single day.

We all know how this works with our spouse/boyfriend...they say one thing, we take it another way, and all along they meant something else entirely.

Yet, we argue about it until we come full circle...because of words and all that comes with them.

Or, someone says one thing, but really are hiding other truths within themselves and are either embarrassed or scared of letting the truth out. So, in essence they dig themselves a deeper emotional pit to get out of someday.

Such work we make for ourselves sometimes...

I have come to love this, and appreciate that my son has to always live in truth and cannot manipulate his situation at all due to his lack of language....at least for now :)

Never thought of it this way...

He has to always deal with the emotion that arises within him.

He can't talk it off...lie it away...he has to feel it and act upon it at that moment.

This is why he is a very intense kid to be around, but it is also never a guessing game with him.

No underlying drama...it is all out there.

And quite honestly may teach us something about human nature.

He is a happy kid 95% of the time....always smiling, always looking for fun, laughter and the beauty in any situation.

Words don't hurt his feelings either.

Except for "NO"...but not many people like that word.

I have, without consciously realizing it, had to raise my son on pure actions...NO words.

This is why raising a child with Autism is difficult.

There's no lying our way out of situations...words alone allow us of that.

Any mistakes I have made with Kannon have all been completely honest and have made me always think before I act.

I have to constantly face my actions with Kannon every minute of every day.

It is very hard, but has taught me to be a better person in so many ways.

I feel this is what has taught me patience...it really is a virtue.

I find the older I get in my relationships with people this becomes so rare.

I like living in truth...even if it isn't pretty.

Actions always speak louder than words, and those who really know and love you will see this.

They will see right through you if you are lying or hiding truth from them or yourself.

So I guess we should all try to be more honest with ourselves....even if we know the consequences. It will free you in so many ways...believe me, I know.

Kannon taught me that :)

peace

thank you

2010-10-06T12:45:00.000-07:00

My heart is very heavy and sad today.

I have come to realize that there will never be enough help out there for these kiddos with Autism.

Even if a family is lucky enough to find the best therapy/therapist out there, it will only last until the money is gone, or until the therapist must move on to better themselves.

I understand that the need for help outweighs the resources available, and it is beyond frustrating.

I also understand that most of these people that offer their help, whether paid or not, are nothing short of angels. The sad, political side of it all is that they just don't make enough money for all that they do.

Just like teachers, these therapists are underpaid and I would suspect in some cases under appreciated.

It makes me so sad that most of us have to rely on faith to keep going.

There is no solid "plan" in place that would allow us to put our intellectual faith in any sort of system out there.

No matter what intentions an organization sets up for themselves, in the end it all comes down to money....duh...but I still hate it.

With a disorder like Autism families/people are forced to live off of faith....

Most of us have little to no money, and the money we do have is all put towards these kids and their recovery....or the hopes of a recovery.

I am not complaining about the money our family has invested in Kannon.

It has been worth every penny.

I just wish that there was a way I could find peace with my faith in this life journey, and know that it will all be o.k.

Not perfection, just o.k.

I just want to know that there are people out there other than myself who love these kids as much as their families do. Maybe not completely possible, but you know what I mean.

And, when we are lucky enough to have these people in our lives, how we can keep them there...

without restricting them, or forcing them.

I also wish that the therapists who help these kids everyday would know just how much they are appreciated and hope that they don't loose sight of the bigger picture when politics get involved in their job.

The best gift that can be given to a family affected by Autism is time, love and acceptance.

Period.

I know how it feels when someone genuinely tells me what a good job I am doing as a mother.

Especially as a mother to a child who has Autism.

I have become a better mother because of the help and guidance of these therapists and the therapy they practice.

I hope someday the system can catch up to this concept.

These kids are more than charts, numbers, or $

Their mere presence in a room can change your life, put a smile on our face, melt your heart.

I am thankful to those few in our life who have affected us so deeply...the showing of human compassion and willingness to grow and open your minds/hearts has not gone unnoticed.

What you do is revolutionary and beautiful.

Unfortunately these kids have no choice in the matter when it comes to having Autism, but fortunately for them there are people out there that do choose to deal with it...

peace :)

2010-09-09T20:40:00.001-07:00

I love perspective(s).

Whether it be from another persons mouth, or a drawing showing someones point of view.

They are learning tools...art...art of life.

I have learned that listening is an art of life too.

I love to listen.

Even when I really want to say something, I will stop and listen first.

I have learned so many wonderful, and interesting things by listening.

It has made me a better person....calmer...more insightful.

Just like physical art, there are emotional arts to be mastered as well.

Listening, watching, being open minded and clear.

There is something to be learned from everyone...from every situation.

I was always an "artistic" type of gal. Much more than analytical or logical.

I like organized chaos...I like feeling my way through things and cataloguing it all in my own mind so that when I need to come back to it later in life I can.

Kannon has been suffering from head pains the past few weeks.

We are going to the doctor tomorrow.

I hope it is just a simple headache, but he is in pain...and there is no bump there.

So, it must be inside his beautiful head where he hurts....

I have to hope his complex, artistic mind is not hurting in a real biological way.

His mind is art to me. I hope he is not in pain...I hope.

He shows me the most beautiful pictures every day with his drawings...actions...motions.

He has become like living art to me.

I have had to observe him like a sculpture of sort...watch him...admire him...question him...listen to him.

Listen to him without judgement or frustration.

I do it every day and still think he is the most beautiful creation ever.

He is my best art project.

I am an artist :)

I made Kannon.

But if you do have a moment will you say a prayer for my little man...that this is all nothing.

peace :)

the gift...

2010-08-23T09:33:00.000-07:00

My B Day is coming up, so it makes me think of gifts :)
The older I get the fewer gifts I receive...but only the physical ones.
With age comes the ability to open oneself up to other gifts...whether it be an act of kindness, an emotional one, or a sunny day, I can find gifts in them all.

Here is what I would really want though, it has been in my heart for the past month so I wanted to share.

I want a clear sunny calm day.
Kannon, and I on a simple wooden raft, floating down a river in some secluded wooded area. Birds chirping, fish swimming by, and no sound other than the water. I would like to be alone with him and just be...and then a little down the river we would pick up Kalena to share the journey with us.

For one, I like the feeling on just being able to float, downstream, no resistance...it feels great.
I like the thought of keeping it simple, no fancy boat, just enough to keep us afloat and safe.
Most of all, I like the thought of getting the opportunity to spend quiet, alone time with my kids.
I want to get to know them away from this environment...I want to be able to just be with them...no appointments, no therapy, no expectations, no other human beings...
I feel so caught up at times with our current schedule that I feel I loose touch with the kiddos at times.
I feel so obligated to do my own therapy on Kannon even when his therapists have left for the day.
It is all out of love and hope that Kannon can pull through this thing called Autism...
but I really don't want to forget how to just be a person with my kids too...not just a mommy, or the mother of a child with Autism.

I find when I really sit down and talk/listen to Kalena she is the happiest.
I find when I just cuddle up next to Kannon and let him just be is when he is happiest.

Unrealistic, perhaps.

I just like the metaphor of the downstream river, my 2 kiddos and nothing else.
I like the way it makes my heart feel.
I also like the idea as a mother to stop making resistance in Kannon's river. I feel at times as if I am stopping his boat, or trying to resist the journey for him...and it is out of fear, not love.
Maybe I should just let him float for awhile, see how it goes....give him that peace of the journey he has chosen for this life.
Just love him and stop being scared for him, and for myself.

I have learned with experience that when you act out of fear it is the emotionally "easy" way to deal with a situation.
Fear of loosing someone, fear of the unknown, fear of loosing control, fear of looking stupid...etc.
When you act out of love though...nothing could be better or more pure.
Easier said than done...but I am going to start.
That is my gift to myself.

peace:)

Our 2 Visitors today :)

2010-07-23T20:17:00.000-07:00

We had a visitor today...actually 2 of them (they know who they are :) )
It reminded me how wonderful Kannon is.
He is so loved.
He is Inspiring...one of our visitors said that today....it made my heart melt.
Sometimes I forget how much he inspires my heart...he is truly so special.

He fights so hard every day for the smallest of things in life.
Most people buzz around getting by, when Kannon can't even say "I love you" to me.
He struggles to find 3 words to piece together to tell me what he wants or needs.
I see my little man struggle SO hard every single day.

But not today.
Today he had true friends here with him.
Friends who let him run around and laugh...and just play...be himself.
He had someone to sit next to and watch a movie with besides me.
He had someone to put his hand on...someone who understood him without judgement.
People who truly believe in his soul...his potential...his heart.
Kannon has a few "angels" in his life...I hope someday he can thank you personally with the words YOU helped give him. After all, without people like you Kannon would be a very different kid. He would not be as happy as he is...because he knows he has friends in you.
He trusts you.

So rare are these days that I had to write about it.

Everyone has angels in their life.
You just have to be open enough to see them and to allow them in.
Even the smallest of gestures can touch the heart in the biggest of ways.

Thanks to our angels.
You truly are changing the world...small little worlds like ours.
We love u :)

peace:)

TO judge or be judged...

2010-07-22T20:25:00.000-07:00

It is inevitable.
I would rather be on the latter part of that statement.
Only because I don't like to judge people...not that I haven't in the past, but I find it unflattering and plain out bad karma.
I think only because I had such hard times fall upon me I learned that lesson the hard way.
I was judged very closely by some, and I didn't like how it felt...so I stopped doing it too.

I like to share my opinion on life matters, but I don't like telling people how to live their life or if they do something a certain way it makes them a terrible person.
It is not my place to do that.
It is no body's place to do that.

Whatever decision(s) one makes in life is their own.
However they react or attend to a life situation is their choice.
As I have shared in the past, I feel life is all about Choices.

You learn from these choices, you feel your way through it all...and that is beautiful.
That is life.
That is learning.

Sure, we all fall on our asses...but you find out who your real friends are when they pick you up and laugh WITH you.

I know people judge me as a mother with a child who has Autism.
I see it every single day.

Bring it.
I like the challenge.
I choose to be open minded enough to open my heart and experience to hopefully better human souls.

For better or for worse, this is my life.
I am grateful and flattered to share it with you...my friends :)

peace:)

Inevitable truths

2010-07-11T08:41:00.000-07:00

I just met my neighbor who lives 4 houses down yesterday.
They have a son who has Autism and is 46 years old.
She stopped me as Kannon and I were walking the new puppy and started talking...for an hour straight...I think I may have said 2 or 3 things...
she noticed that Kannon had Autism and told me her story about their journey with the disorder.
It seemed that still even after all these years and struggles it still hurt her heart to live with Autism everyday, and that she still wanted someone to talk to about it.

It gave me a possible glimpse into my future with Kannon.
I have thought on occasion about the possibility of him living with me for the rest of his, or my life.
I will forever be his hands on caregiver...
He may never have friends like I dream for him, and may never marry or have a family of his own.
All my fears looked me dead on after talking to this lady, for she has been living it her entire life...and the pain was written all over her face.

I have talked about hope in the past, and I refuse to let go of it.
It is my warm blanket when I get scared....and believe me I am scared more than I may let on.
Sometimes when I pray at night I pray directly to "hope"...I want it to hear me and work it's magic.

At least there is one thing I can be 100% of...and that is Kannon will always have me as his friend...I will too someday share his life story, and I hope that it will be filled with wonderful things, accomplishments, laughter, pain and triumph.
I will never emotionally leave Kannons side, and when the day comes that I have to leave him and this world I can only hope the love left behind will be enough for him.
I can only hope he will remember me, because god knows what his mind is capable of...one of the many frustrating effects of Autism...

This is all as a parent that we can hope for our children...that our love, guidance, and time with them was "enough".
This is why it is the most important job out there...
and it is why life can be carried on with and passed down through the soul.
At least one can hope...

peace:)

Happy Father's Day

2010-06-20T18:45:00.000-07:00

This day is confusing to me.
On one hand I really want to celebrate it and find peace within the thought of it all...and then on the other hand I want to climb into my bed and sleep through it.

I never loved that there was a day invented to celebrate dads...and moms.
I always thought it should be done every day on some level or another.
However, it does give some people the chance to redeem their emotional negligence due to busy lives, excuses, etc...

This day makes me miss my dad.
I miss his voice, I miss his counsel, I miss the way he could make me smile from the inside out.
I miss that he isn't here to see my babies grow up, that he will never be called grandpa...
I miss having him here to ground me...we all need people in our lives to feel grounded.
I miss that there is one less person in my life that would truly love Kannon and all his sufferings...

I wonder if Kannon will ever be a dad:)
He would be fabulous.
So much love, so much light to his soul...so much he could teach a soul through his life lessons.

I sat in the driveway this afternoon with tears in my eyes pondering all of this...
I was watching Kannon sit in his red wagon talking to himself and making a makeshift sword out of two sticks and a plastic bag...ingenious, truly it was.
Then as if my dad could hear my prayers and thoughts the wagon all of sudden slowly started to move forward...slowly...inching to the point of the top of the driveway where it starts to slope down. Kannon just sat there and looked back at me as if I was somehow doing this from 10 feet away...
I just sat there, there was no obvious danger...if Kannon did go flying down the driveway he would be fine...really he would.

All of this happened in slow motion to me like some unseen hand of faith nudging that wagon inch by inch...then there went Kannon down the driveway...he ran into the cable box. He was smiling the whole short ride down the driveway...it was beautiful to see his face light up.
Then what came out of his mouth made everything great, it made this somewhat crappy day peaceful...it made me remember how great life can be if you let it.

"OH CRAP"..."OH CRAP"
Clear as day Kannon belted those two lovely words out...he even made serious eye contact with me and repeated it to make sure I heard him.

Ahhh, my heart was smiling again...my boy never ceases to amaze me and lighten my days.

Happy Fathers Day Dad, wherever you are...
and to all you out there who are blessed with little ones that change your life every moment.

peace:)

2010-06-02T09:38:00.000-07:00

Every day I notice more and more the publicity and attention that Autism is receiving.
More people are interested in the disorder and what it is all about...

I find the general consensus is that people are baffled by it.

They don't understand it and cannot wrap their heads or hearts around it all.

I have been asked many times "If I am around an Autistic child, how should I talk to them?"

Or, "should I try to talk to them at all?"

It's a great question, and I don't have the definite answer, but this my my personal advice...

I know as a parent of an Autistic child the one thing I want more than anything for Kannon is for him to be accepted. For him to have friends someday and to be liked by his peers.

That being said, I love when people extend themselves to Kannon.

They obviously know something is "off" with him due to his lack of language and physical ticks, so the fact that they have a big enough heart to overlook that and reach out to him is fabulous.

I would recommend talking to the child as if you were talking to ANY child.

No dumbing it down, no change of tone or pace...

If the child doesn't respond, which they probably won't, then just act as if it were a normal occurrence...no big deal.
Tell them how much you like their smile, their shirt...etc.
Then move on with your day.

Bottom line, talk TO them....not AT them.

Whether they make eye contact or not, they are listening.

In fact these kids are more in tune to other peoples emotions and actions MORE than most normal children.

They are very sensitive and in tune, unfortunately their bodies don't allow them to give out the normal physical cues one would expect from a child reacting to communication or attention.

Also, the parent of the Autistic child will most likely intervene on their child's behalf before you can even expect a reaction from the child.
I have seen some parents act very defensive and abrupt to people, and I get it...it is a defense mechanism developed out of the lack of public knowledge of the disorder. Don't take it personally if you get this reaction...no biggie.

Sometimes depending on the level of acceptance on the parents behalf the parent will react in a quick manner. They may remove the child and walk away, or they may just smile and brush the interaction off as it it never happened. OR they may inform you of the child's "condition" and at that point you may choose to engage the parent in small conversation or not.
Some parents enjoy educating people on their child, and you can ALWAYS use me as an "in".
Tell them you have a friend whose child has Autism, how interesting it has been to follow her adventures with the disorder, etc...etc...you can even give them the link to this blog if they ever need a good smile :)

Whatever reaction you receive, it is wonderful that you even tried to extend yourself to a family who is dealing with Autism.
It is a very isolating disease at times, and bottom line is that we are ALL human.
We all want to be accepted, loved, and to feel emotions through the kindness of others spirits and generosity.

peace:)

CRAZZZZY day...

2010-05-18T14:08:00.000-07:00

It was Thursday, May 13th.
A day I will never forget.

I delivered a baby.
Yes.
With my own two hands.

Here is the story:
About 10:30 am I am standing in my kitchen starting to clean up for the day of therapists to arrive at the house.
Kyle and I are talking and all of a sudden we hear some screaming outside the house.
After about 15 seconds of this, we run outside and standing in our driveway is our neighbor with the most fearful look I have ever seen on a face.

neighbor: "I'm in labor and I'm going to have the baby NOW"
me: "NO you are not"...I grab my phone while escorting her back to her home and call 911.
kyle: "Should I drive her to the hospital?"
neighbor: "My water just broke, it's coming, please help me"
me: "Calm down, did you call 911? Just calm down we will help you"
neighbor: "Please help, the baby is coming..."
me: "Go lay down on your back, go lie down and I will be right there"

I think at this point I have run back and forth between our houses at least 3 times in sheer panic.
I got off the phone with 911, grabbed a bunch of towels and back to the neighbor whom had listened to me and laid down on her back in the entrance of the home.
I put a towel under her butt and prayed for the ambulance to somehow magically appear right then.

neighbor: "I want to push, the baby is coming I can feel it...I need to push"
me: "Please just hold tight, the paramedics are on their way"
neighbor: "It's coming...the baby's head is coming"
kyle: "Kary what do you want me to do?"
me: "Watch her kids, make sure they are o.k."

YES, she had two other kids who were in the car in the driveway screaming and crying...ages 3 and 1.5...
She was attempting to pack her car up to go to the hospital.
So, Kyle stood by the car trying to calm the kiddos and I braced myself for the next 3 minutes.

neighbor: "Please help, the baby is coming NOW"

SO, at this point there was not turning back...no time to think things out...action needed to happen...
I quickly removed her shoes and pants, and sure enough there was the baby's head sticking out...full head of hair and all.

NOW, I don't know how many of you have watched live births.
I saw one video while I was in birthing classes and that was more than enough for me.
Here I was now right in the "mix" of it all.
SO many beautiful colors of liquids and odors are everywhere...it truly is something I cannot accurately describe without making you throw up.

Anyways, as I see this baby's head sticking out I am wondering why in the hell the ambulance has not come yet.
So I am trying to calm her down, rubbing her leg telling her how great she is doing...
Then, the moment of truth came.

She looked at me with pure fear in her face and said "Why isn't the baby crying, I can't hear it"
I don't know if it was motherly instincts or pure gut reaction, but I immediately told her to "PUSH, Just push"...

2 pushes later a baby literally flew into my arms and into this world.
I stopped for a second to take it all in...just stood there with this little life in my hands...
I somehow knew to swipe its mouth of fluids and gave it a gentle pat on the back...and there was the cry...the first cry.
I turned the baby onto it's back, wiped it's tiny little head as well as I could, wrapped it in a towel and handed it over to momma.

me: "Congratulations it's a boy"...

About 1 minute later the firetruck pulled up and the paramedics.
I turned around and looked at Kyle standing in the driveway with my hands out dripping in "goo" and we just looked at each other in pure shock.
We had no words for what we just went through...

They took her away with a healthy baby boy in her arms, and that was that.

A day we will never forget.

peace:)

the power of creation...

2010-05-04T22:47:00.000-07:00

It is 11pm, Kannon and Kalena have been asleep for 3 hours.
Some nights I will check on them before I go to sleep...just because I want to look at them in slumber.
They are so peaceful.
So silent.
So beautiful.

I can't help but stare at them...these beautifully perfect little people that I created.
I created.
I cared for...and they flourished.
It still amazes me at times how much life will fight for life.

Unless you have children, this might be hard to digest or fully comprehend.
Maybe not.
Maybe we can all look at someone or something and feel a sense of internal pride.
A sense of "holy shit I did that"...

It could be art.
It could be a huge mess.
It could be a child...
It could be MANY things.

In MY case, it is Kannon and Kalena.

My angels.
My flesh.
Sometimes, my mirror images.

If I did in fact bring Kannon into this world with Autism attached, then by god this is my choice.
This is my classroom of life...my homeroom.
THIS IS MY CREATION.

I created a beautiful, chaotic, frustrating, amazing, colorful creation of life.

I chose this.

I am an artist.

Kannon is here for a beautiful reason.

It is his time to be seen, heard, felt and thought about.

peace:)

Pink Hello Kitty socks

2010-05-02T21:53:00.000-07:00

One of the things I do love about Kannon is his flair for personal expression.
Whether Autism induced or not, he loves expressing himself.

He went through a phase of about 6 months where he would only wear princess dresses.
My son, who at the age of 3 already resembled a line backer for the Packers, loved princesses.
He had about 6 dresses that he would alternate between.
ALL of them pink, lace everywhere with tulle.
We would go out into public with them on.
Grocery shopping, Target, the mall,the park....EVERYWHERE.

Today when I picked the kids up from their dads house Kannon was wearing pink Hello Kitty socks, brown penny loafers(that he picked out earlier today), green camouflage shorts, and a shirt that was made to look like a tuxedo but is just a t shirt.
He also had his pink princess backpack stuffed full of animals, papers and barbies.

My boy....in all his beautiful misunderstood glory.
He is not confined to the social boundaries that most of us are.
He does not understand them.
He doesn't care.

He only knows what makes him happy.
He knows what lights up his soul.
He has enough courage and blissful ignorance to do what his soul feels.
He doesn't second guess anything...he dives in head first.
He chooses to make himself happy above everything else.

This is one thing I LOVE about Autism.

peace.

2010-05-01T22:18:00.001-07:00

My best friend reminded me the other day of something I wanted to share.

I need to allow myself to feel the bad things that come along with Autism and Kannon.
I need to let myself really feel everything.

I tend to always try to make the best of everything.
To make excuses for things/people in my life that are misunderstood.
I want people to feel peace with everything.
To accept things.

The truth is though that not everyone will accept everything.
I cannot change peoples perspectives of their own truths and beliefs.
That is not my purpose or desire.

I DO want people to better understand Autism.
I want them to feel for this disorder...to feel all the emotions involved even if they are not involved.
I want people to laugh, cry and take a step back and think.
To do this I must admit everything about Autism.
No sugar coating.

This is hard for me because I have so much pain in my soul for Kannon who is misunderstood EVERY SINGLE DAY.
Every moment of his precious life he is misunderstood.
Even by those who are trying to help him recover from all of this...I still see it in their faces.
Therefore, I try to make light of things....I try to make things more beautiful than they may be.
It is all perspective.

Autism sucks.
It really does.
It is the most complex situation one can be presented with, given or forced upon that will tear out every preconceived notion or belief you may have had about behaviors, emotions or the human soul.
It gives you so much, yet takes away twice as much.
It touches your soul in the smallest pockets that have never been opened or used.
Then, it uses them and leaves them damaged, never again to be be salvaged.

Then, at times it brings you to your knees.
It literally gets to the deepest part of your being and makes a wall that forces every single tear/cry out of you until you no longer can cry...until you are out of liquid tears.
Yet, inside you are still crying.

The hardest thing about Autism is that there is no black and white.
No clear cut boundaries or answers to ANYTHING.
This is why I can only hope people will find compassion and patience for this disorder that is and will take over a huge part of our society.
It needs love.
It needs patience.
It needs people to fight for it and with it.

I still honestly feel Kannon is my gift.
I will never regret this journey nor understand why I choose this for my life.
I hope I come out of it all smiling, yet crying.
Strong, yet weak from the battle....soft, yet hard from experience.

peace:)

the little things...

2010-04-24T10:40:00.000-07:00

They really are what make day to day life.
Kannon had his training wheels removed today...for the second time...whatever, he is so proud.
I am so proud.
Kalena got some sassy new shoes with rhinestones and silver straps...I've never seen her run around so much and stop to look down at her feet in pride.
I got 7 hours of sleep last night, I feel great.
Kyle has been playing with Kalena all morning and they both are acting like 3 year old girls...screaming, laughing, fighting...it's hilarious.

These little things are what get me through each day.
I can't look at the big picture all the time or I would go crazy.
I can't think about the "what ifs" or the list of worries I have etched into my heart.

I love little things.

Enjoy yours today:)

peace.

When to surrender...

2010-04-11T11:23:00.001-07:00

Whether I should claim submission, or just surrender to all of this is heavy on my heart today.

Everyday is a "fight" of sorts living with Autism.
Fighting with patience, society, science...
Sadly, too, I fight with Kannon.

We don't duke it out by any means, however he is constantly testing me.
I am always having to redirect him, and 9 times out of 10 he hates me for that.

Yesterday we were outside and he was riding his bike.
I counted, and in the span of one minute Kannon said "look please"..."mommy"..."look"
47 times.
That pretty much means almost every second he was repeating these phrases over and over and over and over again.
Most of the time I am already looking at him, constantly watching him....something that has become a necessary thing for me, mostly for his own protection.
His brain just could not turn itself off though, even when I would try to redirect his verbal ticks, he would go right back to them within a split second.
When I did try to redirect him he would get mad at me, like I was trying to ruin his good moment.

Sometimes I feel so bad that after 10 minutes of this my nerves are literally burning under my skin.
I want to scream sometimes...just shake it out of him.
My heart pounds so hard sometimes just to keep my calm.
I am only human.
It does get annoying.
There is NEVER silence in our home....never....if you can imagine that.
Yet, I KNOW the poor baby cannot help it...he can't differentiate human social cues.

Kannon is always testing me.
Autism is always testing me.
The egocentric nature of this disorder is the ultimate test of human will.
I feel sometimes his soul wants to fight with mine.
What the purpose of it all is, I am trying to delicately figure out.
To surrender to this all would mean it is of my OWN WILL.
Should my will be stronger than my soul, or is it all the same?

I am very submissive to Kannon and to his needs.
I want to be.
I am his mother by my own will.
I love him.
I just hope I have enough fight left in me to last this lifetime.

peace.

KOA center of hope...

2010-04-03T15:27:00.001-07:00

I will write these in segments, as this is a life project of mine.
I want to open a center, a place that is built from love, hope and experience.
I want to utilize my design background and my experience with Autism to build a center that people can go to and spend the day, or an hour and walk out feeling better about life.
A place for support, and a place for education and resources.

My inspiration: Kannon and my father
My concept: A wishing well
My vision: A building built around a huge "wishing well" integrating the indoors/outdoors, gardens, play areas, therapy center and library.
My goal: To educate, inspire and instill hope within the soul.

Imagine the sound of nature around you...water, wind, trees rustling, sun shining...
You are in a beautiful roof top garden surrounded by the sounds of children, laughter, and in the center of it all there is a beautiful wishing well of sorts...it may look like a pond to some, and to others maybe a large calm pool of water.
You hold on your hand a small pebble/marble that is giving to you as a gift for visiting the center of hope...it is a symbol of anything your soul wants it to become.
You use it as your wish token, you can throw it into the well as a wish for yourself, for someone else, or simply as a show of support for the greater cause.
You can wish for whatever you want...as with "wishing wells" they can be a magical symbol for the soul.
They carry so much meaning to me, to my soul. I love how simple they are in concept, and how powerful they really can be if you allow the magic in.

Then picture being inside of this building...you are looking at a large aquarium like sculpture that is floor to ceiling, and you have no idea where the top of it is...you can see the sun light shining through to the bottom though.
You see a pebble floating down through the tank...slowly placing itself wherever it falls.

THIS is my goal.
Once someone visits this place of love, hope, support they will KNOW they are not alone.
They will KNOW that someone else cares and hopes for better things like they do.

By watching this pebble fall into the well, they know someone up top in the gardens above threw it into the wishing well... hoping, wishing, for wonderful things.
I know if I was there I would just stand at the bottom of the well and watch all the pebbles fall into the well and just cry....it would mean what I wanted validation for for so many years now.

So, this is part 1 of many entries to come in regards to a future goal I have.
A place I have dreamt about for years and have built in my mind.
A place that would encompass years of tears, creativity and soul searching.
A place that all humans can relate to whether they know Autism or not.

The KOA center of hope.

peace:)

I choose love...and anger...and happiness...for they are all me.

2010-03-26T10:10:00.000-07:00

Many of you who have been awesome enough to read my blog have sent me many messages of praise and love.
Thank you :)

I want to point out however, where I am today has been a very long time coming and a journey I am still fighting every day.
I love you all though for the support, and I really hope reading my "blah blah blahs" are helping....helping your soul:)

My mother believes that our souls are everlasting....that it is the driver of our physical lives and that we choose our life here on earth before we "arrive".
My mom is one of the kindest, strongest and beautiful souls I have ever come across.
She cries every time we talk on the phone about Kannon.
She feels so much for the little man and for his daily struggles.
She also tells me that I have chosen this life I am living.
That my soul wanted to experience all that I am going through.
She says that Kannon and I chose each other before we became physical entities....

I believe that we do choose our lives.
This is how I accept what happens to me and what is "thrown" my direction.
I CHOSE to learn about beautiful struggles and tough days by choosing my family and friends.
Life is all about choices...ones that we even may have made before we were born.
Whether this philosophy of life is true or not, it still has a beautiful lesson in it.

Beauty, raw emotion, anger, love, trust, hope....
These all come from experience.
They all drive us to become better souls.
These emotions cannot come at face value and must want to be shared or put out there by our own choice.

Sometimes people think too literally.
Sometimes emotions are hindering and can become psychological resources for corrective action(s).

Then, sometimes you fall in love with something or someone and nothing else really matters.

peace :)

What they don't tell you about Autism

2010-03-18T12:19:00.000-07:00

Pretty much everything!
For those of you out there who don't know Autism, or are just learning about it...
Here are things that I have learned and wanted to share.
These can be great tools to identify Autism within a child, or how to become passionate towards children with Autism.

1. Repeat, Repeat, Repeat after me.
Kannon says the same thing over and over and over again...whether you respond or not.
It is like a broken record, and it can test your patience to the max. He will ask me 100 times a day for the same thing...and usually I have to repeat my answer at least 70 times to him, or else it would be 200 times he would ask.
Or if he is fixated on a certain movie he will repeat lines from it over and over again for no reason.

2. Physical "ticks"
These are the hand flapping, head hitting, tip toeing things.
Kannon flaps his hands a lot. When he's excited, when he's anxious, when it's dark out...
It gives him sensory input that is somehow necessary to him.
Almost like an itch that has to be itched...he has to do these physical ticks to get him through the day.
It can look strange, and it does attract attention, usually strange looks...
These physical ticks are usually one of the first things that indicate to other people something is "different" about my child.

3. Tantrums
These can range from mild to OBSCENE.
They can last 1 minute to 30 minutes.
They can come out of nowhere and be triggered by the smallest of things.
When out in public Kannon will be set off by certain things, noises, light conditions, visual scenes.
Sometimes he will just stop and stare or shut his eyes, cover his ears, move on...
Other times it is almost as though it physically hurts him to have seen or heard these things.
He reacts in a physical manner, and on comes the "tantrums".
These tantrums can be very loud and very embarrassing.
I have learned that I cannot control these.
I have learned that other people are going to look at Kannon and look at me like I am a bad mother for letting my child behave that way.
I have learned to say "oh well"...
It is all part of the deal.

4. Hoarding/Perseverations
Kannon specifically has both of these issues.
He LOVES to hoard things...aka collect, stockpile, stash...
It is like he is preparing for a natural disaster. He HAS to have a stash of goods.
He has bags and bags of things that he is very attached to for no reason.
He stuffs the bags full of random toys, trash, paper, etc.
Then at night, he has to have these bags right next to him...almost like a security blanket.
He panics without his "stuff".
He looks like a bag lady...it's very quirky.
I have found leaves, sticks, rocks in my bed after our walks. He collects things and leaves them as treasures around the house.
It gets interesting for sure :)

Perseverations are the WORST.
This is when the child almost obsesses about something or a specific object.
Kannon switches his obsessions about every month or so.
His perseverations consume him.
Right now it is his bike.
He talks about it all day, asks for it every 20 minutes and will not let up about it.
It absolutely tests every fiber in my body for patience.
However, I can't help but feel so bad for him. He really has no control over this.
He can't help that he loves this certain thing so much and his brain cannot switch it off.
The worst was when he was obsessed with belly buttons.
It made going out in public impossible, he wanted to raise up every ones shirts to see their belly buttons.

5. Texture aversions
A lot of these kiddos have aversions or sensitivity to textures.
ALL kinds of textures....food, fabrics, environment, etc.
Kannon specifically has food issues.
If the texture bothers him, he will spit it out even if it's chocolate.
He prefers to wear long sleeve shirts. He likes his arms to be covered. His therapists worked with him for months on being flexible about wearing short sleeves.
He also prefers no socks...we had to work on getting him to wear socks with his shoes.
Little things like this make every day life a little more difficult at times.

6. Autism has no "look"
This is what I get asked the most....or the most looks of confusion about.
On my website I specifically put a page up where I want people to see pictures of kids with Autism...because bottom line is, they don't look any different from any other kid.
This may sound weird, but people think Autistic kids will look a certain way, like a child with Down Syndrome does.
But they don't.
This is sometimes why Autism is difficult on the parent.
To the public eye your child looks normal yet is acting "different"...."crazy"...etc.
People are confused about what they are seeing.
They expect your child to look different since they act different.
Not the case.

7. Autism is a gift
It really is.
It is challenging, overwhelming, frustrating, and confusing.
But it is also magical, humorous, fascinating and full of learning opportunities both emotional and logical.
It shows me just how powerful the human mind/brain is.
Complex and mysterious.
It is something that is given to you as a parent...without choice or knowledge, like a gift.
It is something that you must accept and open with a happy heart.

I often say to myself that "I won the Autism lottery"...
Meaning, 1 out of 70 boys are diagnosed with Autism.
I got 1 of those 70...
I was somehow chosen by fate, or genetics, or something beyond this world...

How lucky I truly am :)

peace.

I knew I became a designer for a reason...

2010-03-12T18:26:00.000-08:00

I graduated in 2006 with my bachelor degree in Interior Architecture, AKA Interior Design.
I LOVED every second of school.
It felt right for the first time in my life to be sitting in a classroom.
Too bad 2 months into my 3 year schedule I popped up being pregnant with my first child (Kannon) :)
I never make things easy for myself, even when I don't intentionally do it.
So I went through most of my schooling pregnant.
I was 6 months pregnant with Kalena, my daughter, when I graduated...
I gave my Valedictorian speech knocked up on a stage in front of hundreds, hmmm, I can only imagine what was going through some people's heads.
Whatever...like I have said before, I never take the easy route in life, and quite frankly I find it fantastic to challenge people's perspectives on how things "should" be.

SO, yes, I did it.
I graduated at the top of my class 6 months pregnant with another child at home.
I had many long nights...many long nights.
I think I got so used to NOT sleeping that when Kalena arrived, I was fine with the no sleep schedule.
Maybe that is also why I got postpartum depression after I had Kalena too.
Bottom line, I worked my tail off for that degree, and I loved every minute of it!

That degree was the only one that made sense to me.
I am ridiculous about how my home looks.
NOW, don't think this means I have only the finest furnishings in my home because I DON'T.
In fact Target is one of my favorite places to buy things for my house.
I am just very particular about how my furniture is arranged, how many pillows are fluffed on the couch, and how many blankets I can get on one bed...color coordinated of course.
I love my home.
I love feeling cozy and safe and aesthetically balanced within my environment.
I love colors and textures and how they make me feel.
Considering I spend 90% of my life in my home damnit it's going to appeal to me.

All this being said, however, I don't mind chaos in my home.
I like laughter, ball playing, crayons on the floor, etc.
When you have kids you kind of have to get used to this decor....you don't have a choice unless you are picking up every 10 minutes.

So, I think my talents have been completely utilized to their full potential.
I think my degree was worth every late sleepless night.
I am constantly redecorating due to sharpie marks on the wall and carpet...the furniture must be arranged to hide them all.
I change pillows on my couch every season due to stains, as well as my curtains...but no one else has to know that:)
It just appears as I care enough to change the color scheme of my home every single season.
I also know how to make a room appear as it does not inhabit children....baskets, baskets, and baskets.
They hold everything, you can throw everything in them and they neatly tuck away into nice clean looking shelves.
They hide any evidence of Dora the Explorer books, plastic animals and other child paraphernalia.
Brilliant.
The fact that Kannon loves to draw pictures of everything, all of my drawing and perspective classes have come in handy. Princesses in perspective, mermaids and pirates in a room with lush surroundings....um hmm.
I also have all the markers and colored pencils a child could dream of.

Who needs clients in Manhattan Beach?
I have my own world of Interior decorating going on every single day...

Fabulous.

peace :)

Diseases that start with "A"

2010-03-09T09:40:00.000-08:00

Specifically Autism and Alzheimer's.
I have dealt with both, and hopefully will never have to deal with the latter again.

The similarities between the two personally astound me sometimes. I find myself having deja vu every day with Kannon. I find that sometimes it helps me in grieving my father, and others it just makes the hurt deeper.

The blank looks.
The confusion, hurt, and emotional pain I see him go through.
The inability to communicate your feelings on a human level.
The loss of physical and emotional survival tools.
The constant judgement by others and being misunderstood daily.
Lack of friends, social interactions, and shunning of society.
Autism and Alzheimer's.

I don't believe I will ever find true peace with my fathers passing.
His suffering was unimaginable, yet I witnessed some of it firsthand, and his last years on earth were just plain pathetic.
The hardest part for me to accept through all his battles with Alzheimer's was the loss of his dignity. I could never get over that. To see my childhood hero loose it all...that pain will stay with me always.
He was such a strong man in his early years. He loved life, family, and had an energy about him that was contagious.
My house was always filled with friends or visitors...good thing my mother was a great cook, as she always was in the kitchen feeding people.
I loved the hustle and bustle of it all.
I loved hearing laughter and chatter as a constant background noise.
I loved that people seemed to want to be with our family and that they found our home a place they could put their feet up and relax.

Funny how quickly that changed after my father got sick.
People didn't come around as much.
No more pop ins or drop bys.
No more chatter and laughter filling our home.

I know it broke my dads heart.
I saw it all over his face every day while he would sit in his chair looking out our back window to the mountains. I never saw him cry, but I knew he was heartbroken.
After all his years of entertaining people and laughing....he was now silent.
Even though he was sick, he still had many moments of clarity where he knew exactly what was going on...even how sick he really was. I think that simple realization alone pulled him so far into himself that Alzheimer's took him.
And he never came back.
Our home was never the same, and he was gone...inside himself somewhere.
I always thought he was back to the good times in his head...back to when our home was filled with people and parties and food...back to the laughter.
I hope so.

Having a child with Autism can feel the same way at times.
It is never easy to just jump in the car and go do something...anything.
You can't just drop by people's homes to say hi without constant worry your child is going to trash the place or get into something they shouldn't.
People don't tend to really embrace your child either.
They don't just get in there and play with them....they don't swing by your house to chat or put their feet up and relax.
Who can blame them though?
It is hard to interact with an Autistic child if you are not used to them...and god knows no one is "used to them".
I'm a mother who deals with it everyday and I still find myself caught off guard sometimes when I am around other kids with Autism. Autism will do that to you...it never is consistent.
Point being, it is much more difficult to have an "open" home when there is a child like mine in it.
I want more than anything to have people always here...always finding comfort and laughter here. I know it is possible. We have friends who are amazing with Kannon and who genuinely enjoy his company...but it takes patience, and it is not for everybody.
I do consider myself and Kannon lucky that we do have some amazing people in our lives who love him, and find the laughter within him and themselves.

Autism I have found, just like Alzheimer's, weeds out certain people in your life.
Or perhaps it just forces you to live a certain lifestyle that may not be as social, open, or free as one would prefer.
It tends to isolate you.
I hate that.
This is one issue I will fight.
I refuse to believe laughter cannot be part of this all...it can.
I laugh every day with Kannon, and at myself.

I hope my dad is now laughing too...at Kannon and I.
Looking in on our daily adventures of life.
I hope he is proud of me and of Kannon.
I hope he knows what he went through was NOT for nothing...
It made me a better person.
A stronger person.
One who now has some of the emotional tools needed to raise Kannon.
For without my fathers suffering and journey, I would not be able to do the things I do every day for Kannon out of love...out of respect...out of hope...

Just no more "A" diseases in this lifetime please...
I'm good.

peace :)

Discovery of the human body...

2010-03-03T11:58:00.000-08:00

Oh what a beautiful time in life...when body parts are fascinating.
They are just that too....not "fat" or "stretch marked" or "too small"....blah blah blah.

Kannon discovered his boy tool (aka penis ) when he was about 3ish...
I remember it vividly.
The UPS man is at our door when I see him all of a sudden smirk while looking over my shoulder.
I look back at Kannon who has his pants off and is swaggering about showing his tool off to the UPS guy. Then his tool not being used to all the fresh air decided to go Pee Pee right then and there. Good stuff, but it gets better....
Then about 10 minutes later after I had managed to wrestle some clothes on him I came out of the kitchen to find Kannon with the blinds pulled up at the front window of our house naked with ALL his glory smashed up against the window doing some very advanced hip movements...
Good thing there just happened to be some nice elderly folks walking their dog out front enjoying the show....at least they found it amusing and didn't call social services for child indecency.

Kannon has never done anything half ass...he goes ALL out in a big way.

He put his boy tool on the sidelines for a bit, but has recently realized its presence once again in a big way.
The other day while I was dressing him he looked down and realized his guy was "hiding" in it's shell so to speak...
He goes "mommy it's gone"and freaked out.
He grabbed it immediately and was desperately trying to get the turtle out of its shell...
Good thing that only took about .7 seconds. Some things just don't change for men do they?!
Anyways, he was SO relieved that his boy tool had not suddenly disappeared.
So relieved that he has to do hourly checks on it...
Full on inspections of his junk.
Pants off, pants down and pat down of the concerned area.
Mind you, in our home this is fine...but at the grocery store its not as cute.

He decided today that he needed to put some hand sanitizer on it.
After hearing a shriek from the bathroom I found him with a very surprised look of anguish on his face...but at least he was clean :)
He also wonders if putting baby powder on it will somehow enhance it...like it needs dressing or something.
He is also very skeptical about the fact that his sister does not have the same tools as he does.
He realized this the other day while they were in the bathtub together.
He wasn't sure what to do about it, so he just pointed at her, looked at me and said "why"?
I really couldn't figure out an answer to such a big question...the best I could come up with that he would understand was "because mommy made her that way".
He didn't seem convinced.
In fact I got a bit of a glare...like I was hiding something.

Maybe this is too long of a rant about this topic, but it cracks me up to see how wonderfully new this is to him...even if it is for the second time.
He is truly fascinated with it and is really concerned about "it".
I love when he shows signs of somewhat normal behavior in regards to child development...
He is showing emotion, reaction, and patience that sometimes escapes him in other situations.

Even if it is quirky, and sometimes awkward, I will continue to let Kannon figure this situation out all on his own.
I know he will come to a conclusion someday about the matter...appropriately so...hopefully...

peace:)

2010-02-27T14:17:00.000-08:00

I have asked myself many times if Kannon would ever grow up and have friends, a girlfriend, play sports, be able to attend a regular school...
There have been moments when I felt that I would be a success as a mother if I raised my kids into contributing members of society.
There was a time when I was at the park with Kannon and another mother and I were chatting as Kannon and her son ran around together. She seemed interested in Autism and had many questions, which I was happy to answer.
Then she asked me if it bothered me that Kannon may never become a contributing member of society....
I was speechless.

What exactly constitutes someone as a "contributing member of society"?
Where and why did this phrase take on so much meaning to people?
There are so many takes on this one...where to start...
Do we first separate by gender?
Do we separate into age groups?
I would think that a "member" would include ANY and EVERY human being....

Ultimately does a person need to physically contribute something before they can earn this title?

My opinion is that we all should strive to contribute something to society.
I don't think it matters how big your audience or receiving group may be...
Feeding the homeless or volunteering is a wonderful idea.
Picking up trash on the beach while taking a walk is also nice.
Going to work every single day to do the responsible thing for yourself or your family, this is what most folks do every single day...I think it should be counted as one of the top honors.
Work can consist of pretty much everything and anything, but it really is what holds societies together...it is what keeps people moving forward.

I would imagine it being difficult to work your entire life and forgetting why you did it to begin with.
I know a lot of people work because obviously they have to...
We should all work.
Again, I think "work" could be many different things....I don't judge in that manner.
We should also be reminded why we do it everyday, and know that we are in some way making this world go round and round with our efforts.

What about kids though?
How can they be judged or considered as contributing members of society?
Just because they don't have a job that pays money doesn't mean they aren't doing a bigger job.
Kids add joy to our lives that cannot be bought or reproduced.
They also bring tears, frustration and levels of insanity we never knew we had in us.
All that being said, they teach us more about ourselves than we ever knew possible and they don't judge us when we fail.
They let us act out and when we are done, they still want to be our biggest fan.
They love spending time with us and cuddling with us.
They laugh every day and instinctively know they are something special to this world.
They really give us the opportunity to show ourselves what we are made of.
How patient we can be...
How much love we have in us...
How creative we are...
How unselfish we can or cannot be.
ALL of it comes back to us. We are tested every single day and our kids give us opportunity and motive to make our own choices....based on what we are really made of.

If that isn't contributing to society than I don't know what is.
We are all a society that needs each other and can learn from the little things every single day if we allow it.

If we have the patience for it.
If we really feel a desire for the bigger picture...
It can teach us so much and help us not just "get by" every day, but live in every moment.

The beautiful part about kids is that they don't realize they are doing a "job".
Innocence is what makes kids fantastic teachers...the lessons they provide for us every day.
Whether good ones or challenging, these are the lessons that we learn the most about ourselves.

peace:)

Insanity?

2010-02-26T10:48:00.000-08:00

http://www.nytimes.com/2010/02/06/nyregion/06hotel.html

This is an article I wanted to share.

I always wondered if I had more money if raising a child with Autism would be "easier".
Meaning, I would be able to pay for any therapy services, hire a part time nanny to provide respite for myself, and heck maybe even a cleaning service just for my sanity.

I know I am not the only mother out there who does everything...
Cooking, cleaning, full time child watching, etc.
And who does it on a budget.
No extra money for clothes, restaurants or fun things...just enough to survive and comfortably survive.
It is obviously 3 jobs wrapped into one without the pay scale.

After reading about this incident that happened it set in how Autism truly requires a special group of people to deal with it.
This mother who had NO financial worries found the only way to deal with her Autistic son was to murder him. Murder him.
Feeding him an overdose of prescription meds, and watching him die.
Apparently now her lawyer is trying to take the insanity route...
OF COURSE she was insane...she was a mother of a child with Autism...it can do that to you.
BUT...you DO NOT turn yourself so upside down and inside out that you rationalize MURDER.
And apparently all the money in the world makes no difference in easing the responsibilities of raising a child with Autism...at least to some people.

This is beyond me.
This is beyond sad, tragic, or explainable.
This is why we need to raise awareness, understanding and support for this disorder.

This disorder is in obvious need of funding, but it goes beyond that.
It needs to not have stigmas or labels attached to it.
It has to be understood on a human level.
We need to embrace it and know that we are not alone in this...

We need people to turn to, or internal peace to go to when we feel overwhelmed.
We need to know it is all for a reason...bigger than us, but for a reason.

And until we find a "reason" we must share, support and love what we already have.
Accept it.
Find peace with it.

KNOW Autism and that it can be beautiful...we can raise these kids into loving, contributing members of family and society.

peace

GUILT...and sweatpants.

2010-02-23T22:10:00.000-08:00

If anyone out there has advice on how to deal with this issue...feedback please.

How does one with children really feel good about having alone or selfish time.
Please.
When my kids are running around causing absolute chaos I want to put them out on the front porch with a "Free to good home" sign around their necks.
YET...when I do have a day to myself I feel SO guilty I can barley manage a moment of pure relaxation.
Really?
This is what my life has come to?

Why did my mother not warn me about this new life that you enter into when you have a child.
I hear your life will never be the same...but good lord.

I can't even have an hour to go grocery shopping without having guilt overcome me while in the frozen food aisle.
I feel bad for "inconveniencing" someone else to watch my kids for an hour so I can put food on the table.
Good thing I don't really indulge in something like shopping or getting a pedicure, because i know someone would get hurt in the process....I would be a mess.

I will SADLY admit I occasionally watch the Housewives of OC on Bravo.
It makes me want to vomit.
The fact that this pool of women represent the geographic area I reside in troubles me.
They are terrible examples....of so many things.
Anyways, point being there are real people who live here that really do have genuine life stories to be told.
Sadly, for television purposes our stories would never make the cut.
We aren't glamorous enough.

Real motherhood is NOT glamorous in any way, shape, or form.
Poop...Pee...Diapers...Tantrums...No money for daycare OR nannies...No pedicures every week...
NO time for make up or hair......you get the point.
Maybe it could be glamorous?
Maybe I am the disillusioned one here....I am open for that possibility.

I wish I could have these things sometimes...but back to my original point...I would feel some guilt with it all.
Why?
I can watch others in envy and happiness.
But when my ass is in that chair, I run.
I run back home to where my kids are.
To where the poop and pee and tantrums are.
To the land of SWEATPANTS.
It is my heaven.

Maybe I need to work harder at learning to relax.
Maybe I need a sedative.
Maybe I need more wine.
Maybe I need to do my hair and makeup before I leave the house?

Maybe I just really care about my kids more than I care about myself.
I know the cliche of "you have to take of yourself to be worth anything to others"
BUT I don't think this applied to pedicures, manicures, etc.
Maybe I need to change my point of view on this one...I am open to that if logical.
Don't get me wrong.
I have had a pedicure and manicure since having kids....5 times in 6 years to be exact.
It just has not been my priority.

I don't see anything wrong with that.
I have to live with it...no one else.
Or should I take advantage of my "youth"
God knows this skin and "firmness" will only last me a few more years.
Maybe I will go out and get a mani and pedi.
AND even some new 4" heels to strut around in, even if it is only in my own home.
Kannon would snatch them off my feet though....those who know him know how much he adores women's shoes, and dresses. One of my favorite pictures of him is him mid air dancing around the living room in a pink glittered princess dress with a tiara on his head in all his glory.
It will be framed when he is grown. His friends and hopefully future girlfriend will all know this picture, and LOVE it.
God I hope he does has friends and a girlfriend someday....
Anyways...
He loves women shoes.
So, I would loose that battle too.

Maybe a nice dress?
But where would I wear it?
To the playground...or to my hourly outing to the grocery store?!
YES! They should have happy hour at the grocery store.
A mixer perhaps.

O.k.
I get it now.
Thanks for listening to my brain sort it all out.

I will go to the grocery store in my new heels(before Kannon steals them), in my new dress, and strut my butt up and down the aisles hoping to gain some sort of self fulfillment while holding back my neurosis about being away from my children while someone else watches them and hoping they have not burned the house down...oh yeah baby.
I will be one hot mess.

Some of you out there SO get this...so this ramble is for you:)

Look out grocery shoppers, here I come.
And most likely I will be in sweatpants...but cute ones.

peace:)

2010-02-23T09:17:00.000-08:00

I have always had a worrisome personality.
One of my earliest memories as a kid is when my mom dropped me off at the neighbors house so she could go grocery shopping. I was a wreck....I thought she was never coming back and all I could do was sit by the front window looking out at my driveway waiting for her to come home.
She did come home. I don't think she ever left me at the neighbors again...what a good mom :)
I would also worry about our dogs, wondering if at any minute they were going to drop dead or get run over by a car. Turns out my childhood dog did in fact get run over by a car...so that didn't help my worrying at all.
I started to believe that all my feelings of doom and worry would eventually come true.

I never thought for a second that I would have had a child with Autism.
Never worried about it while I was pregnant.
All I thought about was what he was going to look like and if he would have all his fingers and toes...stuff like that.
So I guess I was wrong.
Things will just happen in life whether you worry about them or not.

I will say that since having Kannon my neurotic behaviors have been amplified.
I worry way more than I ever used to.
I am paranoid....I wonder what people are thinking, why they are thinking it...it's annoying.
I worry about Kannon running into the street.
I worry that when we are in the grocery store I will turn my back for a second and he will run away, out the doors into the parking lot...
I worry that while I am in the bathroom for 1 minute he is climbing on the kitchen counters and getting into trouble...
I worry.

I hate that I am paranoid.
I hate that people always stare at Kannon and I when we go out in public.
Maybe it is just in my head.
I just know I have been approached one too many times with ridiculous questions.
I have felt the glares while out in public when Kannon was acting out.
For awhile it made me feel very insecure.
I would think complete strangers were just judging me.
Like they had nothing better to do with their time than to look at me with a critical eye.
Like they knew me...who I was inside and how much I was hurting.
Maybe some of them were judging me, as a mother...
When I would lie awake at night this would keep me up. It would eat at me.

Sounds so ridiculous, I know.
This is how isolated and alone I felt for awhile though.
I can understand why some people completely go inside themselves.
It sucks.

I know better now.
I understand that my insecurities were just that.
My own issues that I had to deal with.
I was projecting my paranoia onto others....we all know it's easier to put things off on other people than to look at yourself in the mirror and find fault.
I had to really admit fault, look at things objectively...find acceptance for myself.
Know that I was honestly doing the best I could with what I had.
I still work on this every single day.
I still work on improving my insides so I have more to work with...

Ultimately we have to let what we think people are saying about us when we aren't there go.
We have to have faith in our own being that we are good people, and that the people in our life really love and accept us.
But first we have to love our own life....own it, make no excuses for ourselves.
If other people cannot understand why we do things they way we do, that's fine.
We need to own how we live our own lives...at least I have had to for myself.

We can all learn so much from watching other people live their lives.
Not by judging them either...really just embracing how they make choices and how they find grace within every day.
To trust that everyone in your life will come back to you....sometimes you have to trust more than you are comfortable with...but they will come back if they love you, even if they are only gone for a few hours, or days.

It really is wonderful when you can trust not only yourself, but everyone in your life.
To allow people to love you, and to know that they accept you.

I am working on letting go of my insecurities.
Changing a behavior is one of the hardest things to do...even watching Kannon every day try to change certain behaviors is grueling.
To change the way we are wired is a huge job.
It's a great challenge though...I have learned to embrace the way I feel when my heart feels like it is being tugged, ripped, squashed, warm, tingly...

It is great to feel alive.

peace:)

Absent...

2010-02-18T21:44:00.000-08:00

This past week Kannon has been "absent".
He is physically right here, going through the motions of his day, but when I look into his eyes he is somewhere else.
His verbal is through the roof, meaning he just babbles all day long going between sounds and a word will squeeze in there every now and then. Overall it makes no sense, or they are lines from SpongeBob or Scooby Doo movies.

It makes me so sad.
My heart hurts sitting next to him while he doesn't want to be touched and when he doesn't respond to my voice at all.
It is like I am a complete stranger to him.
A complete stranger who for the past 6 years has been caring for him and about him.

I hate watching him search desperately for something to engage him for longer than 2 minutes.
He has been searching all week for something....anything that will make him happy.
He still has not found it.

I put him down for bed tonight at 8.
It is now 10 and he has been talking non stop to himself and fidgeting in bed.
I can hear him.
Hear him searching his mind.

I walk up and down the stairs to his room.
I pause at his door and just put my head up and listen.
Listen to him sing...rattle movie lines...and even cry.
It breaks my heart.
Why is he crying? Why can't he settle his own mind and go to sleep?
Is he unhappy?
Am I not doing something right for him?

I may never know, because he can't tell me.
He can't even stop moving for a minute to slow his body or mind down.
He sweats like crazy because he can't stop moving.
His eyes haven't focused on anyone or anything.
His brain is jumping from object to object, subject to subject....god he must be so tired.
This is when Kannon scares me the most.
His safety awareness goes completely out the window.
He will bolt out the front door without warning...run down the street.
If we go to the store he will run away, up and down the aisles, grabbing things, breaking things...
I've learned to stay indoors for the most part during these times.

The usual things that calm his mind and body aren't working either.
He doesn't want me to rub his back this week.
He doesn't want kisses or hugs.
He usually always want kisses.
Again, he is not here with me...Kannon's brain is misfiring so badly that he cannot break through for a second.

I have gone through many ups and downs with Kannon.
He will go months making progress...growing both physically and emotionally.
Then out of nowhere he just stops. Sometimes even goes backwards.
I have learned to be cautiously optimistic with him...only to protect my own heart, not because I don't believe in him.
In my humble opinion Kannon is brilliant....he is my angel.
It is so sad when he goes into himself like this.
Where does he go in his mind?
I worry that he may never come back to me...and if that ever happened where did my beautiful, intelligent, happy boy go?

Tomorrow he may be back....or he may be a little more responsive....I hope.
Bouncing off the walls, kissing my hand, hugging me, asking to draw his pictures...
I already miss him and it has only been a week of this behavior.
I guess I am lucky in the fact that I never really take Kannon for granted, because he is frequently "taken" away from me. I am just blessed that he does eventually come back to me.
I said earlier in one of my blogs that you sometimes mourn your child even though they are right there with you. At this moment that is my truth.

This is Autism.
This is how it affects these kids.
This is the reality of it.
Sometimes for whatever reason they just have to go away for awhile, hopefully just to find their way...

peace.

The D word...

2010-02-12T14:47:00.001-08:00

Let's start out by saying I am SO NOT a relationship expert:)
But I do want to touch base on my divorce, as I know a lot of families go through divorce who have children with Autism. This is just my story and experience with it.

Kannon's father and I divorced last year...
Before that we were separated for a year and a half.
I moved out of our home and about an hour away, took both the kids, and that was that.

I never thought immediately about how this decision would affect my kids.
They were both pretty young when we separated...Kannon was about 4 and Kalena 1year and a half, just a baby really.
At the time all I knew was I had to "save" myself.
I had to be happy, because this current situation was not that.

I know people thought I had lost my mind completely when I separated from Kannon's father.

It wasn't like I didn't have enough going on already.

Bottom line: the environment your child grows up in means everything to their happiness and YOUR success.

Having an autistic child adds so much more stress to everything...
You are constantly moving, constantly worrying, and constantly having to watch them.
So, when your spouse is not on the same page as you are...it just is not going to work.

Let me get this out there first:
I am not bashing Kannon's dad. He is a good dad to Kannon. He loves him. He provides for him. He is a good person.

Then let me say this:
That is not all that is required when you are a parent of an autistic child.

I am not saying anyone was right or wrong....or that one person was a better parent than the other.
I just know what worked and what did not work for my situation.

I went into a serious depression after my father died...for months I was completely worthless.
I had no energy, ambition, and sadly I just went through the motions as a mother to my kids.
I should have been proactive in looking for services for Kannon...
I should have laughed with my kids when they were laughing.
I should have done whatever it took to get my sanity back, so I could be a better mom.
Depression does some scary things to ones mind and presence. I was literally absent for over a year. I decided to call that person a different name, since no one including myself recognized who she was....
I should have done a lot of things different...but I didn't.

But I learned to change.
I slowly pulled out of the dark. I slowly started to gain my clarity back.
I started accepting life. I let down all my walls and let myself be vulnerable.
I will also credit my small group of closest friends for their tough love and support...without them I wouldn't have pulled my head out as soon as I did.

I'm not talking perfection here either.
I am NOT perfect.
Never will be, don't want to be.

I have learned through trial and many many errors that Autism takes a whole new bag of parenting tricks. It has also showed me every day just how not perfect I am.

This is where you need to change and adapt....ACCEPT what has been given to you and move forward.
Laugh things off when you want to cry.
Make different choices in how you react to situations....but god is it difficult.
Communicate with everyone in your life what you need and don't need from them.
Cut the crap, because you have to.
Being overwhelmed 100% of the time is an understatement.

You have to be on the same page with your partner. You have to remember why you are doing all of this to begin with. Somewhere along the way that was lost, and that is a big reason the divorce happened.
You have to open parts of your heart and mind that you may not want to...
That is where problems start. At least that is where they started for me.

I have forgiven myself for not being the best mother during my dark times.
I was also not a perfect wife. Who is? I forgave myself for that too.
We do the best we can with what we have internally...that is why we must evolve within so we have more to work with...

I do know that it takes a team effort to raise kids, especially ones with Autism.

And I do know that at the end of most days I found it easier to do this journey with Kannon without his father as my partner. After all, it takes a partner to be one...

You can't change people, they way they react to things...how they view life...
You can only change your path, so that is what I choose to do.
I know that the decision I made was the best one for ME.
I can only hope that Kannon will be "o.k" with how things panned out.
I always hear how divorce messed up a lot of kids, and they carried the anger and hurt into their adult lives...so I am a bit anxious about that.

I have no idea what the right answer is in this situation.
I do know that even when I had 2 crazy kids running around screaming, making messes all over the house, pooping on the floor, dumping juice all over their beds, cascading baby powder all over my room and the floor, putting clothing in the toilet, using toothpaste as some form of a hair gel.... you get the point :)
I didn't want my partner to step in, give me a few minutes...give me a break from my own kids.
I wanted a friend, someone who was my equal in all of this. Someone with compassion, understanding of the situation and someone to talk with.
This is what will save you... Vulnerability, Understanding, Compassion, Communication.
Not a referee or a "babysitter".

Relationships are a choice we make, so are children. They didn't ask to be here, we bring them into this world.
As adults we are forced to make so many decisions every single day.
This was just one I made in hopes of a better future for myself and my kids.
I can only live each day knowing it was the right one for ME, because at the end of the day that is all I really have.

peace:)

2010-02-10T18:52:00.000-08:00

Since Valentines day is approaching I thought I would breach the subject of those 3 little words we all know...
"I Love You"

I would never pretend to be a master philosopher upon where those words started, or why they mean so much to humans...all I know is they do mean the world to some of us.
Sometimes people say it too much and it looses meaning.
Sometimes people don't say it enough and it leaves someone on either end of the relationship with feelings of void.

I remember when my father started to become really sick those words took on a whole new meaning in my life.
I really began to understand what those 3 words meant to me and to my soul.

Not only is it how the person says it to you, it is everything about the moment...
Their voice, their tone, the look in their eyes...it is a complete package deal.

Sadly I don't remember the last time my dad told me he loved me, but I know I told him every single day whether he understood those words or not.
For those of you who don't know, my father died 2 years ago from complications of Alzheimer's disease....
He had started slipping away about 4 years before his passing, we lost a piece of him every single day to that disease. It was truly awful.

I spent a lot of time in hospitals with my dad.
I spent a lot of time holding his hand while he slept and watched him breathe.
I spent many months expecting a phone call that he had passed away.
I also helped feed my dad, change his diaper, help him get dressed,turn him in bed and hold him while he trembled in fear because he didn't understand what was happening to him.
I watched my father go from a man to a scared little boy within months...and that is how he left me. It is an image that haunts me every day.

I find it ironic the parallels between my fathers last years here on earth and the son that I have been blessed with.

I also still help Kannon get dressed. Up until last year I was still changing his diaper.
I also hold his hand when he gets scared or his environment overwhelms him....and I also watch Kannon's pain because he doesn't understand what is going on around him at times.

ALL of this is why I Love You is important to me...
We all have our reasons.

The last words I told my father as he literally took his last breath here on earth were "I Love You...it's o.k to let go"
I say those words every single day to Kannon too.
Obviously the letting go part has different meanings for Kannon than it did my dad.
I want Kannon to let go of fear, anxiety or negative energy...that is why I say those words to him.

Kannon has never spontaneously said to me I Love You.
He has said it back to me in an echoing manner...
I will say "Kannon I Love You"
He responds "Kannon I Love You"

Or if I say it, he will say it back.
But it is his tone that says it all.
He doesn't understand what those words mean...
He is just saying it because I am saying it.
He doesn't understand what it means.
He shows me every day he loves me, the hugs, kisses, gentle touches and laughs.
I know Kannon loves me.
I just hope someday he can tell me...and know why he is saying it...and feel it.

Some days I say to myself that if he could just tell me he loves me it would make all of "this" easier...
It would give me extra fuel to get through those tougher days.
I go back and forth.
Bottom line is: Kannon hasn't needed those words to make me feel his love for me....how can I complain.

I just don't know if we can teach the true correlation between actions and words.
Can we have one without the other....why is one better than the other?
And does it really make a difference?

What makes me human is that I do like to hear those words...
I always will.
Sometimes it really is the simple things or gestures in life that make the world of difference.
I will continue to tell people in my life I Love them.
And I will continue to wait for Kannon to tell me he loves me.

:)peace

2010-02-08T16:24:00.000-08:00

Like I have said before, I try to take Kannon out and about as much as possible.
Not only does he need the sensory input of the sunshine, wind and everything that comes with beautiful California, but he needs to learn how to better navigate safely through his environment.

Kannon and I more than anything will go for a walk through our neighborhood that eventually leads to a huge park. It's about a 2 mile walk one way, and it is one of the safest routes I have found for him. We have such a nice time every time we go too....we hold hands, look at leaves, run through the trees and honestly it is one of my favorite things to do with Kannon.
He always looks so happy and peaceful on our journey to the park.

One day as we arrived at the park there was an unusual crowd of families there, probably having a birthday party or picnic. Kannon's eyes lit up as he saw the kids running around and screaming. He really loves other kids. He always smiles when he is around them...like they are light bulbs for his soul or something.
Kannon took immediately to a group of boys who were probably 2 years older than him. They were running around around playing chase and just being boys.
Kannon started running with them. At first behind the pack, and then after having so much fun running around he made his way to the middle of the running group.
At first, like always kids are fine with Kannon...it is only until they try to start talking with him and realize Kannon cannot talk very well and when he does talk it sounds like baby talk. This is when they either do one of two things.
1. They ask me why he can't talk and then seem interested for a few minutes as if Kannon was some sort of kid sized robot that they just want to watch. Then they are on their way leaving Kannon to his own business.
2. They make fun of him and call him names for a bit, then usually I will step in and remove him from the situation.

On this day, I noticed that right away these group of boys were not wanting Kannon to play with them since Kannon was different than them. They kept running, but this time away from Kannon trying to avoid him. I grabbed Kannon a few times to try to redirect him, but he really thought in his little soul that they were playing with him. Eventually he found a new activity and left the boys alone...but not for very long.

I was sitting on a rock watching kids zoom by, and knew Kannon was on the playground on the slides. Then I heard a cry come from him that I had never heard in all my life...I instantly knew something was wrong.
I jumped up and saw Kannon laying face up on his back at the bottom of a 10 foot drop where those group of boys were....they had pushed Kannon off the playground equipment.
They stood up there looking down at him laughing hysterically at his pain and still making fun of him because "he sounds like a retard"...
My heart broke because I knew Kannon was heartbroken.
He had tried to make friends, and they pushed him.
Hurt him.
He didn't understand.

Thank god Kannon was fine, just startled and got the wind knocked out of him.
I rushed him home to make sure all was good.
The rest of that day Kannon was very quiet. Almost like he had known these boys for years and they hurt his feelings.
All he would say was "mommy ouch" "mean boys"...

I know kids can be mean.
I know everyone at some point or another in life learns these hard lessons of playground rules...
I just don't know how I can explain to Kannon why these kids are mean to him.
I will never tell him he shouldn't try to make friends, but I can't even tell him he will have a harder time than most kids.
Because he is different.

What I love about Kannon is that he doesn't act like he is different.
He treats everyone the same.
He never changes his personality for anyone. He is constant. I love that...
I've learned by watching him how to accept people at face value.
He gives everyone a chance until they give him a reason not to...and even then he still tries to be their friend.
He has a beautiful sense of ignorance to him when it comes to human interactions.
And if someone or something strikes Kannon as "different" he is more attracted to their energy.
He doesn't choose to be negative or run away.
He wants to explore the situation even more.

Who am I to tell this little man that he is different, as if that were a bad thing.
I just need to learn how to protect him without dampening his spirit.

This is something that may take a lifetime.

I just hope Kannon continues to choose happiness over anger.
Friendship over hate.
Acceptance over judgement.
Living over fear.
Love over insecurity...

:) peace...

Hall of shame...

2010-02-04T12:14:00.000-08:00

If you have an Autistic child you know all too well those moments you have when out in public with your kiddo.
The high pitched screams along with the most amazing temper tantrums ever to be had...and even accompanied sometimes with the release of bodily fluids. Oh yes, they are a joy.

Then there are those moments when the second your child gets out of the car, or out of the front door of a building they BOLT...at high speeds right into traffic, streets, people, whatever is out there. They have NO sense of safety or environmental awareness at all. I have learned to always wear my running shoes when out in public with Kannon, because god knows I will be running after him at some point.

There is also the obvious lack of language skills. When you have a large child, like Kannon, people expect him to be speaking in full sentences to me about anything and everything.
WOW are they surprised when instead they hear "ticka ticka ticka...baby please"
Mind you we are on the playground and there is no baby in sight. "ticka ticka ticka" are verbal ticks that these kids sometimes have, and they sound just like that. No words, just sounds and they repeat them over and over again.
I also was blessed with a child who has the loudest voice I have ever heard. His pitch is something dogs can hear in Texas. He has NO volume control within him.
Needless to say there is no hiding his verbal ticks or whatever sounds come out of his mouth.

Kannon likes to "communicate" sometimes by using lines from Disney movies that he watches.
I should be more honest here, he becomes obsessed with a particular movie and it is all that can be on our t.v for a week straight...over and over and over again.
So he learns lines from them quickly and will use them to talk to me sometimes.
There was a period when I was "Gary" the snail from Spongebob Squarepants.

Kannon's annunciation is also not the greatest at times. So when he does use some words they don't come out sounding like they should...
For example, fish sounds like bitch...
Crab sounds like crap...
SO the day we went to San Clemente Pier was fun...he stood there yelling "BITCH" and "CRAP"
Yes, I got some looks...

Kannon always has surprises for me when we go out.
Whether it is running around Target yelling "BITCH" because he found a stuffed Nemo, or fondling the mannequins at Old Navy(Kannon loves mannequins..), or lifting up complete strangers shirts to look at their belly buttons, it is always an adventure.

Bottom line:
DO NOT let anyone else dictate how your day should be with your child.
You experience the day and let them stare at you with disapproving looks and glares.
I have even had other mothers tell me that I should not let my child act that way....or they have asked me why he isn't talking yet...or if I have considered medicating him...

It amazes me the nerve some parents have.
NO child is perfect, and until people understand Autism better we will get the worst looks of all.
I can only imagine what other people think sometimes...
But I really don't care. Kannon has a neurological disorder that he has no control over.
That is the truth. This is the truth we need to get out to others...it's called Autism.

I can only do my best. I can only love him and keep him safe, but I can't shelter him forever.
He deserves the freedoms other kids have too. Just because Kannon is different I will not keep him inside away from the scrutiny of the public eye...he is not a wild animal, even though he may act like one at times:)
I also choose not to judge other people because you just don't know what their story is.
We should all start trying to do the same.

Compassion for others...

A love note to our friends...

2010-02-03T19:07:00.000-08:00

I wanted to selfishly write a few words down to some choice people in my life.
They are the ones who have been there without judgement, well sometimes...:)
They were the ones who really listened to me when I needed to talk, the ones who have shown so much love, respect and patience for my life....and I need to put down in words how much it means to me.

This is no particular order whatsoever.

Melissa...my best friend.
I love you more than I could ever tell you. You bring tears to my eyes and my soul. the way you love me and Kannon is a way that no one ever has or will. You held me accountable when I could not. You listened when I babbled on for hours. You were the one person I always knew I could count on...over anyone in my entire life. You loved me more than I loved myself. Your friendship and our relationship means the world to me, and I can't wait until we are gnarly old women together bitching about anything and everything. You are the one I would choose to grow old with if I could :) I love you. Thank you for loving me, and for loving Kannon.

Kyle... :)
I love you. You have never let me down. You have been a voice of reason when I was completely unreasonable. You held my hand and heart when I was down. You make me laugh every single day. You light up my dark moments and bring peace to my soul. You have never judged me, in fact you were always proud of me. I love looking at you, it calms me when I need calm. I love the way you love me. Thank you.

Mom and Sher...
We have had our talks...I have let you both down in the past, and I will never forgive myself for that. Through everything you 2 were my only family. We have lost so much the past few years. When we are together there is nothing but joy and laughter. I am my happiest when I am with the 2 of you. The most important and memorable moment of my life will always be when we watched dad pass away in front of our eyes....just the 3 of us standing around him. It was such a beautiful moment, one that we will always have. Thank you both for your pure love, support and prayers for Kannon. I love you guys so much.

Shannon and Michael...
The love and respect you have shown Kannon and myself has been amazing. You both have been through the very rough times with us, and you never judged. You trusted me. You believed in me. Thank you. You both always provided me with a safe place, both emotionally and physically. I love being in your presence. You both make my heart happy. From the bottom of my heart and soul, Thank you. Kannon loves you, I love you, and we can't wait for the years to come with you guys. :) BTW, what do you do when your gifts go missing from Chuck E Cheese?

Kannon's therapists...
They know who they are :)
In my opinion you are nothing short of angels.
You are saving his life, you are his best friends, you are what he looks forward to every day.
Your patience, enthusiasm and passion for what you do touches me so much.
I have seen you get hit, bit, spit on, pooped on, etc...etc...
Yet you keep coming back every day and fighting for Kannon. Fighting for him to break through all of this.
You are such special, amazing souls. I love having you in our home every day.
I love that you are a part of our life.
Kannon loves you more than he may ever be able to express, but I see it all over his face.
He knows....he knows what is true and what is not.
He knows you are on his side.
Thank you.

AND last, but not least....Kalena.
I know you can't read yet...but I hope someday you will read this.
You are Kannon's sister, you are his biggest fan.
I love how much you love him and look out for him.
You are proud that he is your brother, and I see how proud he is that you are his sister.
You stick up for him at school, and you tell everyone how cool he is.
When you guys run around and play here at home your laughs fill my heart with so much joy.
You love him. You really love him.
I hope you will always be best friends with him.
I hope you realize how amazing you are for loving him so much.
I love you baby girl.
You are our angel.

Kannon is so lucky to have you all in his life.
Thank you just doesn't seem like enough.

We love you.