Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Saturday, February 27, 2010

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.


Friday, February 26, 2010



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.


Tuesday, February 23, 2010

GUILT...and sweatpants.

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.
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.
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.
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....
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.

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.

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.


Thursday, February 18, 2010


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...


Friday, February 12, 2010

The D word...

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.


Wednesday, February 10, 2010

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.


Monday, February 8, 2010

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...

Thursday, February 4, 2010

Hall of shame...

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...

Wednesday, February 3, 2010

A love note to our friends...

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.

Tuesday, February 2, 2010

The difference between realizing something was "different" with Kannon and when he was officially diagnosed with Autism

As all first time parents would probably agree you are filled with so many new emotions when your little one arrives.
First there is absolute bliss, a love you never knew existed in your heart, and then of course the fabulous changes to your sleep and daily schedule...that hits the hardest in my opinion.
Anyways, your world is turned around and you are officially a "new" person.
You have to be the grown up now. No more playing in the sandbox...it is go time.

Depending on your family/friend support system you have in place in makes all the difference in the world. Had I had a better support system around me I know I would have been much happier the early years. If you can, take advantage of people when they offer help. Let them watch the kid for an hour so you can sleep, or get out of the house...it really will help.
Bottom line is I believe 100% in a solid support system to be in place. It takes a village to raise a child, and I can guarantee you that everyone will benefit in the long run.

All that being said, as a first time mom I was overwhelmed. I did not have a solid support system and I was very naive.
SO, when I started to notice that Kannon was not as far along as other kids I didn't know what to do. I first went to his doctor and she didn't seem worried. I talked to my family and most people said that he probably was just a little slow and that boys to tend to develop slower than girls...
"He will just start talking in full sentences one day" was what I would hear from A LOT of people.
So, naturally I believed it. I wanted to believe it more than anything. I wanted to believe that Kannon was just "slow" and that any day now he would start talking to me about the weather, or his toys, or how much he loved me...
Weeks turned into months, and eventually into years...no talking.
Obviously by the time Kannon was 4, I was beside myself and doing what I thought was best for him with the resources available to me. Basically, speech therapy and special education classes through the public school system.
What baffles me is that even at this point his pediatrician still never mentioned the word Autism to me. She thought he had a speech disorder call Apraxia. I was still in my blissful mindset that Kannon was going to start talking to me any day now...

I know that what kept me int his mindset was Hope. I really think that Hope and Tease should get married and have kids....because you can't have one without the other.
I had so much Hope for Kannon and for his ability to "get better" overnight, and when he would show small advances in either his behavior or language it was like a Tease. It tickles at your heart and messes with your head. You have a physical reaction to it, just like you would any kind of Tease. Which in turn, leads you right back to Hope. Around and around I went...

Due to legal reasons, we needed to get Kannon evaluated by a child Psychologist. We not only had to research ones that dealt specifically with Autism Disorders, but ones that were credible and who knew how to work with and around certain bureaucratic systems...
Also, we had to pay out of our own pocket for his services.
FYI, if you ever need to have your child evaluated or assessed by a licensed, respected individual expect to pay around $3500-$5500, depending on the amount of hours and time that needs to go into your child's case.
You will find out that an assessment by a professional is absolutely necessary...it can be your golden ticket to a lot of services. A lot of services require you to have a clinical diagnosis of your child's condition, again it does not come cheap though.

We were very fortunate to find one of the best Child NeuroPsychologists in California. He was very passionate about his work, and had been doing it for 20+ years, before Autism was the epidemic it is today. Obviously Kannon was in good hands.
He ran his tests, did his observations in our home and at Kannon's clinics, and about 3 weeks later we had a final report in our hands.
(I want to note that a 3week turn around for these type of assessments is almost unheard of, usually it takes anywhere from 5-7 weeks)

So, there I sat in my driveway with a pile of papers in my hand about an inch thick.
There were numbers and stats and charts all through it, and as I skimmed through it I finally got to where my head and heart was dreading for the past 5 years...Kannon's official diagnosis.

When I actually saw the word Autism next to Kannon's name my world fell apart.
This may sound so stupid considering I had been living with this child and knew something was wrong with him...but Hope kept my heart from believing it was Autism.
Hope kept me from wanting to believe it was Autism...
So, I cried for about an hour. I called my sister and cried and cried and cried...

I had never felt more alone, more scared or overwhelmed than I did that very moment.
I was heartbroken. I really had convinced myself that Kannon was going to start talking to me any day now. That he would run up with open arms tell me he loved me and that he was just silent all those years trying to perfect his language...this is what Hope can do to you.

The thing is though, I love Hope. I love the feeling it gives me.
Sometimes it is all I have when I lay down at night...so I will not give up on Hope.
Like I said, it can be a Tease at times...but I will always keep Hope in my heart.

Who knows...maybe someday Kannon will just start talking to me.
Maybe he has just been taking everything in so that when he and I start talking he can teach me all about the world around him....

I can't wait :)

Monday, February 1, 2010

Welcome to my blog! 6 yr catch up...

Well well well...
Where to start?

I would first like to extend my support and love to those of you reading this who is taking care of an Autistic child or adult. This has been the toughest job I have ever had to do and it has taught me more about myself and others than I ever expected.

I will sum up the past 6 years so that we can move forward.
My son, Kannon was born in 2003. He was my first child and he was a big one! Weighing in at 9lbs 3 ounces I thought I had birthed a toddler. I had no complications with my pregnancy, the only stitch was that he had to be delivered via c-section due to his size. He was very healthy at birth and off we were into the land of parenthood...

I started noticing something was "off" with Kannon when he was about 20 months.
I was alarmed when I saw him around his peer group and realized he was way behind in many developmental areas.
Now, I must admit I was never a real "kid" person. I had nothing against them of course, but I never was that girl who always babysat or ran to play with kids when at a function. I stayed away and observed them if anything. This being said, had I been around children more growing up maybe I would have noticed Kannon's delays at an earlier age.

Kannon's language was way behind. He could not identify one animal, never mind sit long enough to play with a plastic animal. He just seemed to have no interest at all in playing with most toys, or with other kids. He seemed to always have his own agenda and do his own thing. It almost looked like he had ADHD, jumping from thing to thing without completion of any task.
He had problems in daycare. He could not follow the normal routine of the class. Circle time was impossible, and only after months in the same class would he go down for a short nap. We were lucky that the teachers were amazing people and tolerated Kannon's disruptive and odd behaviors.

Kannon then proceeded to go to different early intervention programs. Some through the school district and others through the state...
Had I known then what I do now I would have been much more proactive in getting him in ABA therapy as soon as possible.
ABA therapy, or Applied Behavioral Analysis is an intense program that I am still learning about, but overall has been very effective in helping kids with Autism. It helps their quirks, learning ability, and safety issues to name a few. Depending on your child's specific needs/goals the program is obviously created around them.
I have been lucky enough to get Kannon with CARD here in southern California.
Center for Autism and Related Disorders
You can research them online if you like....in my humble opinion they are amazing and they are helping to save Kannon's life day by day.

I have left out ALL of the hoops and hurdles that had to be crossed in order to get help for Kannon.
Unfortunately it is NOT easy to get help for these kiddos. It is time consuming, resource limited, and very draining. You really have to fight for everything.

This is part of my goal, to raise awareness of the need for resources and funding towards Autism. Not only research, but funding for schools, therapy, grants for families who can't afford therapy on their own. (believe me the cost of private therapy is ridiculous)

With the latest numbers on Autism it simply cannot be ignored anymore.
We need to educate ourselves, the public and then hopefully help and resources will follow.

Until then, finding support and accepting the situation in front of you is something that should be done. I mean emotionally processing everything and taking care of yourself as best as possible so that you can care for your child. WAY easier said than done....believe me.
It took me awhile to truly accept my situation. I did not embrace it right away. I was angry, and I felt sorry for myself. That is the truth. I hate admitting that, but it is all part of the process.

I always considered myself a good person. Loving, accepting, open minded.
I was never truly tested though until these past 4 years.
I lost my dad and both Grandparents, I had an Autistic son, I earned my degree, I got a divorce...all in a matter of 4 years.
I guess I was just bored before and wanted to get all the emotionally taxing things in my life dumped on me at once... yeah right.
It is life. It happens whether you are ready for it or not.

We all have our stories. I don't want sympathy. I only want to share my story so that maybe it could help anybody out there dealing with Autism.
It is hard, it is not pretty or glamorous.
But it can be beautiful.
I have had moments with Kannon that are better than those you see in movies.
Tears are an every day thing around my house, and not just the bad kind. Tears of love and ones that can only be shed when you have a child like this. You feel SO much for them.
You mourn them every day even though they are right there with you.
You laugh with them and watch their small moments of advancement with such pride that you could burst....even if it is as small as them putting their shirt on the right way for the first time at age 6. I think people in China probably heard my screams of joy when Kannon pooped in the potty for the first time, at the tender age of 5.5...and not a day too soon, the diapers weren't getting any bigger out there. I was looking into Adult diapers for him since he kept growing and not using the potty. Aaaah, just a distant memory now.

I know you know what I'm talking about.
This roller coaster of emotions...
We have to be able to laugh at things. We have to take time every day to enjoy our child even though they may not want to connect with you at all. We have to push and push...and push for every moment we get.
I have to remind myself to stop and observe Kannon. To not go into "robot" mode and just get by...even when I am so tired I could fall asleep standing up, I will take a moment to look at my beautiful boy. For this is all happening for a reason, one I may never understand or really want to understand....but this is my life.

The life of a parent with an Autistic child.

Thanks for reading today.
Take some time to stop and find the beauty. Find some peace, even if it is for one minute.