I've hesitated writing anything in light of the tragedy that occurred in Newtown.
I 've cried daily when watching the parents speak of their children, and seeing pictures of them smiling as only children can with such innocence.
My heart cannot make sense of "why"...
Neither can my head.
However after hearing through a mutual friend this morning that somewhere out there in this confused world of ours a kid tried to light an Autistic kid on fire because of the recent tragedy, well I just cannot say something...
I first have to say out of respect and love for humanity that by no means am I trying to shift attention to, or stand on any soap box of any kind for my cause.
I am not putting anything above the loss of those precious lives.
Please hear this.
What I have to do though is make it very clear that people desperately need educating about Autism.
People need to understand that behind the stigma of the "A" word there are very real souls existing...alongside very loving, strong, compassionate parents/families.
The daily life of Autism is enough to bring the strongest of wills to their knees.
The emotional toll it takes to watch your child live every day with this disorder is at times unbearable.
The struggles families go through to get help for their children and themselves is time consuming, overwhelming, and sometimes impossible.
Sometimes in general the trials faced through Autism are impossible.
And that is just the harsh reality of it.
However...it does NOT mean that we are bitter, worn down, angry souls.
Quite the opposite.
What I have seen through many families living with Autism is nothing short of inspiring.
It makes people stronger.
It makes those affected by it more patient, kind, and empathetic to the world around them.
It forces one to turn their views upside down and inside out.
It forces you to find the beauty in life.
It completely makes you re evaluate what it takes to live a life well lived.
Do we sacrifice for the greater good?
Yes.
Do we have to find something "bigger" in all of this crazy, confusion of a world we live in?
Yes.
Do we suffer silently because "we" are so misunderstood by society?
Yes.
So, here is our "normal":
Hand flapping.
Body rocking, head swaying.
Loud voices.
Loud strange noises coming out of their mouths.
Extreme sensitivity to light, noise, textures.
Emotional outbursts sometimes resulting in screaming and/or tantrums.
Inability to relate appropriately to peer group.
Poor physical awareness in relation to personal body space.
Movie talk/echolalia.
Numerous food allergies.
Special/restrictive diets.
Inability to focus for periods of time.
Sleepless nights.
Potty training into ages 6...7...8
Speech therapy
Occupational therapy
ABA therapy
Social skills therapy
Specialized school programs
Special vitamins, supplements, medicine.
etc...etc...etc...
This is why I started writing this blog.
If only so one other person outside of my world could see my son through my eyes...
Try to understand his ticks, his outbursts, his ways...without me having to explain it.
To see WHAT AUTISM REALLY IS, and to let you know IT IS OK.
He will not hurt you.
It is not contagious.
That this is what Autism looks like...the good, the bad, the ugly.
From one perspective of course.
Autism is bigger than me.
Bigger than Kannon.
Spreading awareness of what lies beneath that misunderstood exterior of his is my passion.
This is what I will continue to do on my son's behalf so that hopefully one day society will choose to take a second look at the disorder and perhaps take a minute or two to educate themselves on something that unfortunately is an epidemic...
Yes, an epidemic.
To bring proper, honest awareness to Autism is the best way I know how to honor Kannon and all the other kids out there that someday will be adults.
Adults that we as parents, and a society want to have the best possible chance at success.
Without judgement, without shame.
I continue to pray for the victims of Newtown and their families , and I will continue to pray.
Let's not let the act of an individual ruin humanity or cloud our greater intelligence...
We are bigger than that.
Communicating honestly, openly, and in an educated manner is a start to opening the doors of understanding Autism.
I am always open to any questions anyone has in relation to Autism...no matter what they may be, and will answer them as honestly I know how from my experience.
peace.
Wednesday, December 19, 2012
Monday, November 26, 2012
Goodbye J.
How do you let go...
How can you take a step forward when sometimes all you want to do is stand still...sit down...bury your head and cry.
Cry out of frustration, love, and loss.
Everything in life has the potential to hurt you.
Nothing in life is predictable.
But that is what makes it painfully beautiful.
The hard lessons our hearts go through...
As of tomorrow Kannon no longer has a therapy team.
Due to internal strife and policy changes all of his therapists gave their 2 week notices 2 weeks ago...
This includes our angel, whom I will call J.
J is his main therapist.
The one who has held his team together over the past 4.5 years without fail...without her Kannon would not be where he is today.
J has been on Kannon's team since day 1.
She is his best friend...his comfort blanket...his true love in life besides family.
That's because now she is family.
So tomorrow we must say goodbye to J.
She is moving on to better opportunity, to a place where hopefully she will find happiness.
Such is life.
Sometimes you come across people who really give a damn.
Who truly make a difference in this world.
Smart, savvy, amazing souls.
They can't help but touch your life and make a difference in your little world...
Kannon has always found a way to feel the beauty in life.
He rarely is down or sad...a troubled heart is just something he does not have.
When I told Kannon that J was "leaving"...she won't be coming back to our house anymore to do work, it stopped him in his tracks.
"WHY??"
"Is J mad at me?"
"Kannon is good boy, not make J mad..."
He broke down.
He dropped his head as if it had no strength to hold itself up and cried.
He cried and cried.
He wiped his tears.
He wiped away mine.
"It's o.k momma... J will find love again..."
"It's gonna be o.k."
His heart yet again overcoming pain...overcoming the obvious and feeling through it all.
His strength and actions are inspiring.
Through his own pain and loss he still thought of J.
He wanted her to be happy...to find love again.
J came over on a day off to say goodbye.
To take a walk with Kannon, just the two of them.
She said she felt as if she needed his approval to move on...this is how much she loves Kannon.
It is so real. The love, respect, and admiration they both have for one another is beyond special.
On their walk he asked her to marry him.
He thought if he did she wouldn't leave.
He wanted forever.
I now realize why he has always loved princess movies...why he always chooses princess dolls and fairy tale movies over matchbox cars or nerf guns.
He believes in happily ever after...
If this doesn't prove souls talk to one another without words, then I don't know what would.
J was there from the beginning.
J helped Kannon learn language...learn his name...his colors...
J never gave up on Kannon, even when things seemed impossible.
J was Kannon's happily ever after.
Thank you J.
You have no idea how much you mean to our hearts.
You have made a permanent indentation on our lives.
You are wonderful.
Kannon's life, heart, and mind is better because of your hard work, love, and dedication to your craft.
Kannon may never propose again...
As his mother I never knew it was even possible for him to comprehend the concept.
But I love that he believes in an ever lasting love.
One that can be solidified with words.
Even though in the beginning words weren't there...
Love finds a way.
It always finds a way if it was meant to be, no matter what the relationship is...
We love you J.
Goodbye, and thank you.
To the moon and back, thank you...
peace.
How can you take a step forward when sometimes all you want to do is stand still...sit down...bury your head and cry.
Cry out of frustration, love, and loss.
Everything in life has the potential to hurt you.
Nothing in life is predictable.
But that is what makes it painfully beautiful.
The hard lessons our hearts go through...
As of tomorrow Kannon no longer has a therapy team.
Due to internal strife and policy changes all of his therapists gave their 2 week notices 2 weeks ago...
This includes our angel, whom I will call J.
J is his main therapist.
The one who has held his team together over the past 4.5 years without fail...without her Kannon would not be where he is today.
J has been on Kannon's team since day 1.
She is his best friend...his comfort blanket...his true love in life besides family.
That's because now she is family.
So tomorrow we must say goodbye to J.
She is moving on to better opportunity, to a place where hopefully she will find happiness.
Such is life.
Sometimes you come across people who really give a damn.
Who truly make a difference in this world.
Smart, savvy, amazing souls.
They can't help but touch your life and make a difference in your little world...
Kannon has always found a way to feel the beauty in life.
He rarely is down or sad...a troubled heart is just something he does not have.
When I told Kannon that J was "leaving"...she won't be coming back to our house anymore to do work, it stopped him in his tracks.
"WHY??"
"Is J mad at me?"
"Kannon is good boy, not make J mad..."
He broke down.
He dropped his head as if it had no strength to hold itself up and cried.
He cried and cried.
He wiped his tears.
He wiped away mine.
"It's o.k momma... J will find love again..."
"It's gonna be o.k."
His heart yet again overcoming pain...overcoming the obvious and feeling through it all.
His strength and actions are inspiring.
Through his own pain and loss he still thought of J.
He wanted her to be happy...to find love again.
J came over on a day off to say goodbye.
To take a walk with Kannon, just the two of them.
She said she felt as if she needed his approval to move on...this is how much she loves Kannon.
It is so real. The love, respect, and admiration they both have for one another is beyond special.
On their walk he asked her to marry him.
He thought if he did she wouldn't leave.
He wanted forever.
I now realize why he has always loved princess movies...why he always chooses princess dolls and fairy tale movies over matchbox cars or nerf guns.
He believes in happily ever after...
If this doesn't prove souls talk to one another without words, then I don't know what would.
J was there from the beginning.
J helped Kannon learn language...learn his name...his colors...
J never gave up on Kannon, even when things seemed impossible.
J was Kannon's happily ever after.
Thank you J.
You have no idea how much you mean to our hearts.
You have made a permanent indentation on our lives.
You are wonderful.
Kannon's life, heart, and mind is better because of your hard work, love, and dedication to your craft.
Kannon may never propose again...
As his mother I never knew it was even possible for him to comprehend the concept.
But I love that he believes in an ever lasting love.
One that can be solidified with words.
Even though in the beginning words weren't there...
Love finds a way.
It always finds a way if it was meant to be, no matter what the relationship is...
We love you J.
Goodbye, and thank you.
To the moon and back, thank you...
peace.
Friday, November 16, 2012
every day you learn...
You learn the difference between what is important and what really doesn't matter.
I've learned how to find the peace in every situation without loosing myself...without getting caught up in it all.
Sometimes that means walking away or keeping my mouth shut...but I've learned.
I've watched Kannon play on the playground by himself, time after time after trying to play with other kids...
I've watched him be bullied, harassed, and laughed at...too many times.
As a mother it breaks my heart, it hurts.
I just walk away. I don't watch sometimes because it hurts too much.
I let him find his way in this confusing, sometimes cruel world.
I close my eyes when I see the pain all over his face when he knows he has just been treated badly by others...I close my eyes and wrap him up in my arms.
I just can't watch it sometimes.
I've learned to accept my journey for what it is while allowing others to experience their own.
Without judgement, without jealousy...but as a friend, a mother, a lover...
No matter what my role it never makes it easy to watch those you love in pain.
I can accept and deal with my own pain, but I am still learning how to deal with the pain of others.
So sometimes I close my eyes.
Sometimes I walk away...sometimes I walk closer and make my presence known.
I suppose it's trial and error...I don't always do the right thing.
But I learn and keep moving forward.
With every door that closes, another opens.
Everything happens for a reason.
Blind faith is the only option.
With every goodbye, you learn...and learn.
Constant reminders to keep my heart happy.
To keep it at peace.
To help me understand the entire journey, not just my own.
To help me be a better mother, friend, lover...
Because the bottom line is that without these people in my life I am not whole.
I am better because of my relationships in life.
Sometimes we forget how important other people are, or can be.
I have experienced too many people leaving my life to know better.
I never take it for granted anymore.
My emotions make my weak at times, but I know no other way.
I don't know how to not show my love for those who love me.
Maybe I should open my eyes more.
Stand my ground instead of walking away when the pain gets the best of me...
I don't know the right answer, but I am still learning.
With every goodbye in life, you learn.
With every relationship there are lessons...
With every moment there is opportunity.
I stood at Kannon's school yesterday and watched him play at recess.
He was by himself.
He was smiling, he stopped a few times to interact with other kids with no outcome...he moved on, happy.
Again, I stood there and could feel the sadness overcome me as I watched him.
All those feelings welling up...knowing how badly Kannon wanted friends, kids to play with.
And just as I was about to walk away out of not wanting to watch anymore, I saw Kannon stop and look down at his feet...
He picked up a handful of grass and threw it up in the air, he threw his arms out and smiled as the grass fell on his face...he laughed and jumped and did it again...then he just stood there with his head back in air feeling the sun shining on his face...
And to think I almost missed that moment.
I almost walked away not trusting he could handle it...
Ironic.
peace.
I've learned how to find the peace in every situation without loosing myself...without getting caught up in it all.
Sometimes that means walking away or keeping my mouth shut...but I've learned.
I've watched Kannon play on the playground by himself, time after time after trying to play with other kids...
I've watched him be bullied, harassed, and laughed at...too many times.
As a mother it breaks my heart, it hurts.
I just walk away. I don't watch sometimes because it hurts too much.
I let him find his way in this confusing, sometimes cruel world.
I close my eyes when I see the pain all over his face when he knows he has just been treated badly by others...I close my eyes and wrap him up in my arms.
I just can't watch it sometimes.
I've learned to accept my journey for what it is while allowing others to experience their own.
Without judgement, without jealousy...but as a friend, a mother, a lover...
No matter what my role it never makes it easy to watch those you love in pain.
I can accept and deal with my own pain, but I am still learning how to deal with the pain of others.
So sometimes I close my eyes.
Sometimes I walk away...sometimes I walk closer and make my presence known.
I suppose it's trial and error...I don't always do the right thing.
But I learn and keep moving forward.
With every door that closes, another opens.
Everything happens for a reason.
Blind faith is the only option.
With every goodbye, you learn...and learn.
Constant reminders to keep my heart happy.
To keep it at peace.
To help me understand the entire journey, not just my own.
To help me be a better mother, friend, lover...
Because the bottom line is that without these people in my life I am not whole.
I am better because of my relationships in life.
Sometimes we forget how important other people are, or can be.
I have experienced too many people leaving my life to know better.
I never take it for granted anymore.
My emotions make my weak at times, but I know no other way.
I don't know how to not show my love for those who love me.
Maybe I should open my eyes more.
Stand my ground instead of walking away when the pain gets the best of me...
I don't know the right answer, but I am still learning.
With every goodbye in life, you learn.
With every relationship there are lessons...
With every moment there is opportunity.
I stood at Kannon's school yesterday and watched him play at recess.
He was by himself.
He was smiling, he stopped a few times to interact with other kids with no outcome...he moved on, happy.
Again, I stood there and could feel the sadness overcome me as I watched him.
All those feelings welling up...knowing how badly Kannon wanted friends, kids to play with.
And just as I was about to walk away out of not wanting to watch anymore, I saw Kannon stop and look down at his feet...
He picked up a handful of grass and threw it up in the air, he threw his arms out and smiled as the grass fell on his face...he laughed and jumped and did it again...then he just stood there with his head back in air feeling the sun shining on his face...
And to think I almost missed that moment.
I almost walked away not trusting he could handle it...
Ironic.
peace.
Monday, November 5, 2012
2Dimensional Love.
Every day Kannon is bombarded with stimuli.
Stimuli used by his therapists and teachers to evoke a response that will hopefully produce a correct response.
Usually it starts out in 2 Dimensional form...as simple as a drawing on a piece of paper.
Then sometimes it moves onto 3D, or used in the real world to see how he responds to the cue given to him.
Ahhhh, the beauty of fundamental ABA therapy.
Discrete Trial Teaching...basically breaking down a task into smaller, more teachable components.
The child is given a "cue" or discriminative stimuli - the child responds - a reward is given for a correct response.
A few years ago Kannon didn't understand the concept of love.
What it really meant.
What it felt like.
I think more than anything he wanted to, I think this desire is what drove him to dig deeper sometimes when he just wanted to stop...
Stop all the hours and hours of therapy...the demands being placed...the constant life work.
I would see him at night hugging his stuffed giraffe.
Holding it to his cheek and looking at it...almost like he was waiting for some sort of response, some sort of reciprocation...something called love.
What he didn't realize is that the whole time he was giving so much love...so much of him wanted to feel it back and understand what it all meant to his heart, and to his brain.
He was truly finding his way within the limitations of his brain.
Damn brain...it seems to never find its way to the heart...or is it vice versa?
As a parent to a child with Autism you learn very early on that you must let go of all pre conceived notions of mile stones, both physical and emotional. You must accept that your child may never reach any of them.
I believe one of the first things I accepted early on was that Kannon may never tell me he loved me...and if he did he may not really understand what it meant.
Would they just be words he muttered out of his training?
Would he be "programmed" to tell me these words before he went to bed since he heard me say them every night to him while he lay there sleeping?
I just didn't know.
I didn't want to set myself up for such heartache....I logically wanted to prepare myself so that I wouldn't feel the sting of it all.
As Kannon's mom I find myself constantly preparing myself for future heart break.
I don't let my heart get ahead of itself.
I don't allow myself to have faith in the process...
And logically why should I?
When you see your child fight so hard day after day just to say their name when asked, how the hell can you expect them to feel love or empathy.....how?
But here's the other side to that wall.
On the other side of it I still pray/prayed every night for Kannon.
I still talk to him while he sits in his bed staring at the ceiling muttering mindless words.
I open my arms to him every morning, hug him and tell him how proud I am to be his mom.
I talk, and talk to him when he sometimes has no response for me.
I still cry to him and tell him how scared I am...how I don't understand what is going on and how much I hope he someday will just look me in the eye and say "I love you."
And not just say it, but feel it...understand it.
It sounds so simple I know.
So simple in such a complex world...in the world of Autism.
It seems ironic looking at it, or thinking about it all now.
My faith in Kannon never stopped.
My faith in HOPE never failed my heart...or my brain...not once.
No matter how hard I trained myself to not feel pain, or disappointment, or fear, it didn't matter.
Even though I was getting through every day content, at peace with it all, my heart never gave up hope for more...for a bigger picture of why it is what I do every single day for Kannon.
To believe that love cannot be taught, nor should it be.
That love is something the heart breaks through to the brain...it fights for the honor of feeling love.
I get asked quite often how it is what I do every day...how I find the strength to carry through some very tough times...
I find moments that matter.
I allow myself to be brought to my knees in times of weakness...and I open my heart and arms and just be human...I just breathe.
I pray...I cry...I laugh at myself a lot...I talk to my son who may never have a meaningful conversation with me.
But here is what I remind myself of every single day...
Just because you don't hear a response doesn't mean they aren't listening...whoever "they" may be.
It doesn't mean your words or faith go away or have no meaning.
And never expect a response that you want...it's blind faith.
It is giving yourself to the situation and letting go of expectations.
It is truly a raw life learning experience.
Kannon's therapist drew a 2D stimuli for him a few months back to prompt a response from him when asked a simple question.
You know what he said when she asked him?
"Momma"
My heart hears you too Kannon.
It really does.
And apparently he was listening all these years...at least his heart was.
peace.
Stimuli used by his therapists and teachers to evoke a response that will hopefully produce a correct response.
Usually it starts out in 2 Dimensional form...as simple as a drawing on a piece of paper.
Then sometimes it moves onto 3D, or used in the real world to see how he responds to the cue given to him.
Ahhhh, the beauty of fundamental ABA therapy.
Discrete Trial Teaching...basically breaking down a task into smaller, more teachable components.
The child is given a "cue" or discriminative stimuli - the child responds - a reward is given for a correct response.
A few years ago Kannon didn't understand the concept of love.
What it really meant.
What it felt like.
I think more than anything he wanted to, I think this desire is what drove him to dig deeper sometimes when he just wanted to stop...
Stop all the hours and hours of therapy...the demands being placed...the constant life work.
I would see him at night hugging his stuffed giraffe.
Holding it to his cheek and looking at it...almost like he was waiting for some sort of response, some sort of reciprocation...something called love.
What he didn't realize is that the whole time he was giving so much love...so much of him wanted to feel it back and understand what it all meant to his heart, and to his brain.
He was truly finding his way within the limitations of his brain.
Damn brain...it seems to never find its way to the heart...or is it vice versa?
As a parent to a child with Autism you learn very early on that you must let go of all pre conceived notions of mile stones, both physical and emotional. You must accept that your child may never reach any of them.
I believe one of the first things I accepted early on was that Kannon may never tell me he loved me...and if he did he may not really understand what it meant.
Would they just be words he muttered out of his training?
Would he be "programmed" to tell me these words before he went to bed since he heard me say them every night to him while he lay there sleeping?
I just didn't know.
I didn't want to set myself up for such heartache....I logically wanted to prepare myself so that I wouldn't feel the sting of it all.
As Kannon's mom I find myself constantly preparing myself for future heart break.
I don't let my heart get ahead of itself.
I don't allow myself to have faith in the process...
And logically why should I?
When you see your child fight so hard day after day just to say their name when asked, how the hell can you expect them to feel love or empathy.....how?
But here's the other side to that wall.
On the other side of it I still pray/prayed every night for Kannon.
I still talk to him while he sits in his bed staring at the ceiling muttering mindless words.
I open my arms to him every morning, hug him and tell him how proud I am to be his mom.
I talk, and talk to him when he sometimes has no response for me.
I still cry to him and tell him how scared I am...how I don't understand what is going on and how much I hope he someday will just look me in the eye and say "I love you."
And not just say it, but feel it...understand it.
It sounds so simple I know.
So simple in such a complex world...in the world of Autism.
It seems ironic looking at it, or thinking about it all now.
My faith in Kannon never stopped.
My faith in HOPE never failed my heart...or my brain...not once.
No matter how hard I trained myself to not feel pain, or disappointment, or fear, it didn't matter.
Even though I was getting through every day content, at peace with it all, my heart never gave up hope for more...for a bigger picture of why it is what I do every single day for Kannon.
To believe that love cannot be taught, nor should it be.
That love is something the heart breaks through to the brain...it fights for the honor of feeling love.
I get asked quite often how it is what I do every day...how I find the strength to carry through some very tough times...
I find moments that matter.
I allow myself to be brought to my knees in times of weakness...and I open my heart and arms and just be human...I just breathe.
I pray...I cry...I laugh at myself a lot...I talk to my son who may never have a meaningful conversation with me.
But here is what I remind myself of every single day...
Just because you don't hear a response doesn't mean they aren't listening...whoever "they" may be.
It doesn't mean your words or faith go away or have no meaning.
And never expect a response that you want...it's blind faith.
It is giving yourself to the situation and letting go of expectations.
It is truly a raw life learning experience.
Kannon's therapist drew a 2D stimuli for him a few months back to prompt a response from him when asked a simple question.
You know what he said when she asked him?
"Momma"
My heart hears you too Kannon.
It really does.
And apparently he was listening all these years...at least his heart was.
Sunday, October 14, 2012
the gloves are off...for now
The constant fights we go through daily for our children living with Autism is something that I have accepted as a part of my life and something that I feel is just as important as...breathing.
I breathe in, I breathe out...sometimes to calm my mind, other times without a thought.
I do the same with fighting for Kannon.
I just do.
Sometimes it's easier than others, and sometimes it takes a toll on me...and sometimes I fight because I have no choice if Kannon has a chance for a better life.
If you read my past few posts they were in regards to our battle with Kannon's Health Insurance company to pay for services that by California law they have to...yet they always find their "loopholes" that allow them to pass the buck off to someone else, or just stop the buck period.
After months of back and forth, 3 grievances, 2 appeals and getting the CA dept of health involved we are still in a stand still with them...or so I thought.
I received news yesterday that this particular Health Insurance company has decided to re evaluate their position on the new law and that they have decided to work with families and other ABA vendors.
Basically, the number of families who decided to fight back finally outweighed the cost of them saying NO.
Finally after months and months of families fighting back, calling them every day, sending them the files, reports, and stats that proved them wrong...they finally realized the overwhelming reality of it all.
Autism is not going away, and neither are the strong headed parents who have had to fight for every minute of every day for their child...who know a love and patience in the face of diversity like no other.
They heard the voices and persistence of the life of Autism.
This is a great victory for Autism, and for families living with it.
Hundreds of families will now get the help they need and deserve.
It may be a small victory, but one nonetheless.
Amen.
Sometimes when I go through times like these I get overwhelmed.
I tend to loose sight of the BIG picture, that these fights I fight for will and do make a difference.
That when families like mine step up and speak our experiences it will make a dent in the system who desperately needs our voices and help.
A system that without the persistence of families who know better can help families that are just starting out in this confusing, scary journey.
I know some amazing people that have fought heartbreaking fights for the better of Autism.
People who fight out of pure love and hope for their children.
I just want to remind them that their energy, time and examples are making a difference...
They are paving a smoother road for future families.
Your love is shining through more than you know.
I am grateful for my journey and for being inspired by watching others.
I do wish Autism never existed.
But it does.
It needs our help, our voices, our fight.
Keep fighting the good fight.
We may never see the results of some of our efforts, but we need to remind ourselves that this fight is bigger than we are...it will take some time.
I suppose in the meantime we must survive on the strength of our love as parents.
On knowing that nothing worthwhile is never easy.
Knowing that these kids need our voices, because god knows if they could talk about it all they would set all of us straight.
peace:)
I breathe in, I breathe out...sometimes to calm my mind, other times without a thought.
I do the same with fighting for Kannon.
I just do.
Sometimes it's easier than others, and sometimes it takes a toll on me...and sometimes I fight because I have no choice if Kannon has a chance for a better life.
If you read my past few posts they were in regards to our battle with Kannon's Health Insurance company to pay for services that by California law they have to...yet they always find their "loopholes" that allow them to pass the buck off to someone else, or just stop the buck period.
After months of back and forth, 3 grievances, 2 appeals and getting the CA dept of health involved we are still in a stand still with them...or so I thought.
I received news yesterday that this particular Health Insurance company has decided to re evaluate their position on the new law and that they have decided to work with families and other ABA vendors.
Basically, the number of families who decided to fight back finally outweighed the cost of them saying NO.
Finally after months and months of families fighting back, calling them every day, sending them the files, reports, and stats that proved them wrong...they finally realized the overwhelming reality of it all.
Autism is not going away, and neither are the strong headed parents who have had to fight for every minute of every day for their child...who know a love and patience in the face of diversity like no other.
They heard the voices and persistence of the life of Autism.
This is a great victory for Autism, and for families living with it.
Hundreds of families will now get the help they need and deserve.
It may be a small victory, but one nonetheless.
Amen.
Sometimes when I go through times like these I get overwhelmed.
I tend to loose sight of the BIG picture, that these fights I fight for will and do make a difference.
That when families like mine step up and speak our experiences it will make a dent in the system who desperately needs our voices and help.
A system that without the persistence of families who know better can help families that are just starting out in this confusing, scary journey.
I know some amazing people that have fought heartbreaking fights for the better of Autism.
People who fight out of pure love and hope for their children.
I just want to remind them that their energy, time and examples are making a difference...
They are paving a smoother road for future families.
Your love is shining through more than you know.
I am grateful for my journey and for being inspired by watching others.
I do wish Autism never existed.
But it does.
It needs our help, our voices, our fight.
Keep fighting the good fight.
We may never see the results of some of our efforts, but we need to remind ourselves that this fight is bigger than we are...it will take some time.
I suppose in the meantime we must survive on the strength of our love as parents.
On knowing that nothing worthwhile is never easy.
Knowing that these kids need our voices, because god knows if they could talk about it all they would set all of us straight.
peace:)
Wednesday, August 29, 2012
A very tough goodbye.
It's almost like that picture or painting you hung on your wall years ago, that you walk by every day and glance at while moving through life...
It is a constant in your world, a constant image that provides stability within an unstable world.
You know it's there and you love it, hence why you put it there in the first place...to be admired and to show a glimpse into what your soul wants to express.
Sometimes you may look at it for inspiration...
For serenity.
To bring you back to why you chose it in the first place...why you thought it was worthwhile of hanging in your home.
It becomes part of your life fabric.
It exists and it expresses itself without words.
It is beautiful.
There are things/people/life sources that come into our lives for many different reasons.
Some stay for a day, others for years.
Sometimes they leave by their own choice.
Sometimes we push them out.
Whatever the reason we loose things that come into our lives, it is for a reason.
A choice perhaps, by both parties and not always reciprocal.
Like pictures on our wall, some stay hanging for awhile while others we change out because they no longer suit our "taste"...
I do know that in my crazy everyday world there have been very few constants.
Things that I can walk by in life and always know will be there...for my enjoyment, my happiness, my comfort.
One constant has been my dog.
I have had Cisco, my old man for 14 years now.
I also have a lovely, crazy lab...she just turned 2...didn't want her to feel left out :)
Cisco has been there through quite a lot in my life.
My constant in life.
14 Years of friendship, and as we know with dogs...pure, honest love.
He has been my beautiful painting hanging on my wall of life.
Always inspiring, always steady, and always there for my peace of heart.
He has always been here, even when I have taken his existence for granted...because my life got the best of me...because I was too overwhelmed to give him that extra scratch on the head or rub on his belly.
No matter where I was in my life, he never changed.
He always loved me.
Always wanted my love, time and affection...and if he didn't receive it as much as he wanted he was still there the next day to try.
We humans are so lucky.
So lucky to experience true friendship and love through these animals.
For whatever reasons, this is what has been going through my heart about what I have to do tomorrow.
I have to say goodbye to my old man of 14 years.
I have to make the decision that my aching heart is not as important as his dignity.
I owe him that much...and so much more than I could ever repay in one lifetime.
Someone told me that true love is letting those you really love free...
Letting them fly again.
I know that tomorrow Cisco will be young again...
He will be flying high and free.
Goodbye my friend, my constant reminder of love and loyalty...and thank you for blessing my walls of life with one of the most beautiful pictures my heart will never forget.
peace.
It is a constant in your world, a constant image that provides stability within an unstable world.
You know it's there and you love it, hence why you put it there in the first place...to be admired and to show a glimpse into what your soul wants to express.
Sometimes you may look at it for inspiration...
For serenity.
To bring you back to why you chose it in the first place...why you thought it was worthwhile of hanging in your home.
It becomes part of your life fabric.
It exists and it expresses itself without words.
It is beautiful.
There are things/people/life sources that come into our lives for many different reasons.
Some stay for a day, others for years.
Sometimes they leave by their own choice.
Sometimes we push them out.
Whatever the reason we loose things that come into our lives, it is for a reason.
A choice perhaps, by both parties and not always reciprocal.
Like pictures on our wall, some stay hanging for awhile while others we change out because they no longer suit our "taste"...
I do know that in my crazy everyday world there have been very few constants.
Things that I can walk by in life and always know will be there...for my enjoyment, my happiness, my comfort.
One constant has been my dog.
I have had Cisco, my old man for 14 years now.
I also have a lovely, crazy lab...she just turned 2...didn't want her to feel left out :)
Cisco has been there through quite a lot in my life.
My constant in life.
14 Years of friendship, and as we know with dogs...pure, honest love.
He has been my beautiful painting hanging on my wall of life.
Always inspiring, always steady, and always there for my peace of heart.
He has always been here, even when I have taken his existence for granted...because my life got the best of me...because I was too overwhelmed to give him that extra scratch on the head or rub on his belly.
No matter where I was in my life, he never changed.
He always loved me.
Always wanted my love, time and affection...and if he didn't receive it as much as he wanted he was still there the next day to try.
We humans are so lucky.
So lucky to experience true friendship and love through these animals.
For whatever reasons, this is what has been going through my heart about what I have to do tomorrow.
I have to say goodbye to my old man of 14 years.
I have to make the decision that my aching heart is not as important as his dignity.
I owe him that much...and so much more than I could ever repay in one lifetime.
Someone told me that true love is letting those you really love free...
Letting them fly again.
I know that tomorrow Cisco will be young again...
He will be flying high and free.
Goodbye my friend, my constant reminder of love and loyalty...and thank you for blessing my walls of life with one of the most beautiful pictures my heart will never forget.
peace.
Tuesday, August 7, 2012
Introspection.
I've learned so much over the years being in the situation/life that I am in.
Overall I am grateful, happy, and love waking up to each new day with my family and friends.
I think one of the most important lessons I have learned is that when the heart hurts, the head will take over...and when your head hurts or is full of confusing thoughts, the heart will take over.
That we all put up walls in our lives, and we also all have walls to break down.
You have to be able to let things go.
Take a deep breath and inhale the blessings all around you.
They truly are there if you choose to see them.
I have watched my beautiful children grow into human beings, exploring their world and learning new things every day.
I have learned to let go of their hands a little more each day...to just let them be.
Slowly but surely I have learned that without trust in the process and the people I have chosen to have in my life I will never move forward.
I have learned that forward motion is vital to life.
When things have become stagnant, or sticky, I simply remember that without courage and hope for better moments there is nothing.
I love that people are different.
Different views of life, different ways of doing daily routines.
It brings a sense of movement to the atmosphere of life.
I have learned from watching others.
Out of respect, out of love, and out of sheer curiosity I have seen the beauty that lies within each human spirit...no matter how different it may be by my perception.
I have decided to not define things anymore.
I feel it limits my outlook.
It pushes my heart inward and it feels wrong...
This has truly helped me get through some very tough moments in my life.
I still close my eyes and revisit moments I had with my father, grandmother, and grandfather, who have all passed on... I allow myself private moments like this to reflect and remember the good times.
I choose to honor them in my own way.
I choose to not let grief consume my heart.
I honor their beautiful, different lives and doing so gives me strength and insight to my own present moments.
I am still so young and have so much to learn.
I do know that thus far my journey has been full of challenges and heavy, heart pressing moments...
I can only hope that I will continue to find beauty in all of this.
That my perspective stays in a forward moving motion.
That I will continue to find other people who may be complete strangers, beautiful for what they do.
The other day I watched Kannon get laughed at over and over for his "odd" behaviors at the beach.
The stares, pointing, and verbal ridicule.
In the past this used to tear at my heart and anger would consume every part of my being...
This time however I just watched Kannon.
I didn't care about anyone else.
I watched to see if he was absorbing any of this.
He looked up a few times at some boys who were laughing and staring and he choose to wave hello and tell them "it's a beautiful day"...
This little man and his actions have helped bring me to where I am today.
Let it go, smile, and realize every day is beautiful in it's own way.
You cannot control what other people think, or for that matter let it affect your journey at all...
At the end of the day what they think or say makes no difference in the matters of how your heart develops or grows.
Sometimes other peoples actions or decisions affect us whether we like it or not, and these are the times we have to really dig and search for the greater picture...for the solidity of what walls we want to push and how hard we want to push at all.
And as I have stated before, we get to define what walls we put up and what they are made of...what we are made of to tear them down is completely up to our own choosing.
I have the honor of watching a little soul who chooses his walls be made of beautiful silk...always moving, fluid and flowing...easy to break down...and always of his own creation.
I wish for everyone to find beautiful walls that are worth putting up, simply for the purpose of finding the beauty in them, and the beauty in watching them fall down.
peace.
Overall I am grateful, happy, and love waking up to each new day with my family and friends.
I think one of the most important lessons I have learned is that when the heart hurts, the head will take over...and when your head hurts or is full of confusing thoughts, the heart will take over.
That we all put up walls in our lives, and we also all have walls to break down.
You have to be able to let things go.
Take a deep breath and inhale the blessings all around you.
They truly are there if you choose to see them.
I have watched my beautiful children grow into human beings, exploring their world and learning new things every day.
I have learned to let go of their hands a little more each day...to just let them be.
Slowly but surely I have learned that without trust in the process and the people I have chosen to have in my life I will never move forward.
I have learned that forward motion is vital to life.
When things have become stagnant, or sticky, I simply remember that without courage and hope for better moments there is nothing.
I love that people are different.
Different views of life, different ways of doing daily routines.
It brings a sense of movement to the atmosphere of life.
I have learned from watching others.
Out of respect, out of love, and out of sheer curiosity I have seen the beauty that lies within each human spirit...no matter how different it may be by my perception.
I have decided to not define things anymore.
I feel it limits my outlook.
It pushes my heart inward and it feels wrong...
This has truly helped me get through some very tough moments in my life.
I still close my eyes and revisit moments I had with my father, grandmother, and grandfather, who have all passed on... I allow myself private moments like this to reflect and remember the good times.
I choose to honor them in my own way.
I choose to not let grief consume my heart.
I honor their beautiful, different lives and doing so gives me strength and insight to my own present moments.
I am still so young and have so much to learn.
I do know that thus far my journey has been full of challenges and heavy, heart pressing moments...
I can only hope that I will continue to find beauty in all of this.
That my perspective stays in a forward moving motion.
That I will continue to find other people who may be complete strangers, beautiful for what they do.
The other day I watched Kannon get laughed at over and over for his "odd" behaviors at the beach.
The stares, pointing, and verbal ridicule.
In the past this used to tear at my heart and anger would consume every part of my being...
This time however I just watched Kannon.
I didn't care about anyone else.
I watched to see if he was absorbing any of this.
He looked up a few times at some boys who were laughing and staring and he choose to wave hello and tell them "it's a beautiful day"...
This little man and his actions have helped bring me to where I am today.
Let it go, smile, and realize every day is beautiful in it's own way.
You cannot control what other people think, or for that matter let it affect your journey at all...
At the end of the day what they think or say makes no difference in the matters of how your heart develops or grows.
Sometimes other peoples actions or decisions affect us whether we like it or not, and these are the times we have to really dig and search for the greater picture...for the solidity of what walls we want to push and how hard we want to push at all.
And as I have stated before, we get to define what walls we put up and what they are made of...what we are made of to tear them down is completely up to our own choosing.
I have the honor of watching a little soul who chooses his walls be made of beautiful silk...always moving, fluid and flowing...easy to break down...and always of his own creation.
I wish for everyone to find beautiful walls that are worth putting up, simply for the purpose of finding the beauty in them, and the beauty in watching them fall down.
peace.
Thursday, August 2, 2012
Hoping for the uncanny to shed some light...
In short, as a follow up to my last post Kannon was unbelievably denied for any ABA services through his Health Insurance.
Denied.
I feel as if this is becoming all too routine with this whole path.
Just like 5 years ago when Regional Center denied Kannon for services as well.
Apparently he is either "too Autistic" or "not severe enough"...
Whatever the hell those statements mean.
It varies from "professional" to "professional".
So, here we are.
I don't want to say I am feeling stuck, because I don't.
I am just at the point in things that I want to feel things out...if that makes any sense at all.
I don't want to get upset or feel defeated anymore.
It takes too much of a toll.
Proof being the 2 days after Kannon was denied services I had the worst migraine ever and that was followed up by a few days of sore throats and ear aches...my body was just shutting down, it was tired.
I made all the phone calls I felt necessary.
I spoke with 3 different lawyers with no satisfactory result or resolution.
I did find out a lot of helpful information and assurance that if I did push a case against the Insurance company it would be a strong one.
I unfortunately don't have thousands of dollars sitting around to pay a lawyer to push the case...but I am still trying to find one that will work pro bono...wish me luck ;)
I spent another couple of days on the phone again with the Insurance company trying like hell to get as much as I could in writing and as much information possible on anything, anything at all that they had documented on how they were handling this new law and their patients rights, etc.
As of today I have one piece of paper coming to me.
One.
Yesterday as I was sitting with Kannon at the table after dinner I just stared at him...
Half of it was one of those loving mommy stares at the beautiful little person we fight so hard for and do what we do...
The other half was out of sheer exhaustion and just spacing out.
Kannon: "Momma, you tired?"
Me: "Yes baby I am pretty tired...hey buddy can I ask you something?"
Kannon: "what is it?"
Me: "Remember when we went to the doctor the other day?"
K: "Yes, I drew, I sat and no shots"...Kannon always has to be reassured that he will not be getting shots when we go to the doctors...
Me: "Well she told mommy that you could no longer have your friends come over to help you"
K: "uh huh..."
Me: "So, what do you think mommy should do?" "Should I fight it or just let it go..."
There was about a 2 minute reflective pause...
Kannon looked down at his artwork, stopped drawing and just stared at me...but not a blank stare, it was as if he was trying to read my face...trying to see what my eyes were saying to him.
K: "Momma, just let it go..."
He proceeds to raise his arms up in the air take a deep breath and say it again..."Let it go..."
Me: "Yeah buddy but sometimes you have to fight to get the right answer"
Me: "Sometimes fighting isn't a bad thing if you don't physically hurt someone"
Another pause.
K: "Let it go...you will get hurt...you will cry...let it go"
I am going to believe that in this brief conversation with Kannon he knew exactly what we were talking about, that he had been listening to all the phone conversations I had and all the talks I had with Kyle at night in tears...
I am going to believe that he understood all that has been going on and all that has been said in front of him while he sits and draws his art and sings his songs to himself.
I will believe that he does know what is best for himself...when to fight, and when to let it go...
And I have to believe that through times like these I have the insight and patience to make the right choice for Kannon and his future.
I believe our conversations will continue to help me out...Kannon's insight on life remains to be uncanny.
After all, believing all of this makes me smile and god knows I needed to.
peace :)
Denied.
I feel as if this is becoming all too routine with this whole path.
Just like 5 years ago when Regional Center denied Kannon for services as well.
Apparently he is either "too Autistic" or "not severe enough"...
Whatever the hell those statements mean.
It varies from "professional" to "professional".
So, here we are.
I don't want to say I am feeling stuck, because I don't.
I am just at the point in things that I want to feel things out...if that makes any sense at all.
I don't want to get upset or feel defeated anymore.
It takes too much of a toll.
Proof being the 2 days after Kannon was denied services I had the worst migraine ever and that was followed up by a few days of sore throats and ear aches...my body was just shutting down, it was tired.
I made all the phone calls I felt necessary.
I spoke with 3 different lawyers with no satisfactory result or resolution.
I did find out a lot of helpful information and assurance that if I did push a case against the Insurance company it would be a strong one.
I unfortunately don't have thousands of dollars sitting around to pay a lawyer to push the case...but I am still trying to find one that will work pro bono...wish me luck ;)
I spent another couple of days on the phone again with the Insurance company trying like hell to get as much as I could in writing and as much information possible on anything, anything at all that they had documented on how they were handling this new law and their patients rights, etc.
As of today I have one piece of paper coming to me.
One.
Yesterday as I was sitting with Kannon at the table after dinner I just stared at him...
Half of it was one of those loving mommy stares at the beautiful little person we fight so hard for and do what we do...
The other half was out of sheer exhaustion and just spacing out.
Kannon: "Momma, you tired?"
Me: "Yes baby I am pretty tired...hey buddy can I ask you something?"
Kannon: "what is it?"
Me: "Remember when we went to the doctor the other day?"
K: "Yes, I drew, I sat and no shots"...Kannon always has to be reassured that he will not be getting shots when we go to the doctors...
Me: "Well she told mommy that you could no longer have your friends come over to help you"
K: "uh huh..."
Me: "So, what do you think mommy should do?" "Should I fight it or just let it go..."
There was about a 2 minute reflective pause...
Kannon looked down at his artwork, stopped drawing and just stared at me...but not a blank stare, it was as if he was trying to read my face...trying to see what my eyes were saying to him.
K: "Momma, just let it go..."
He proceeds to raise his arms up in the air take a deep breath and say it again..."Let it go..."
Me: "Yeah buddy but sometimes you have to fight to get the right answer"
Me: "Sometimes fighting isn't a bad thing if you don't physically hurt someone"
Another pause.
K: "Let it go...you will get hurt...you will cry...let it go"
I am going to believe that in this brief conversation with Kannon he knew exactly what we were talking about, that he had been listening to all the phone conversations I had and all the talks I had with Kyle at night in tears...
I am going to believe that he understood all that has been going on and all that has been said in front of him while he sits and draws his art and sings his songs to himself.
I will believe that he does know what is best for himself...when to fight, and when to let it go...
And I have to believe that through times like these I have the insight and patience to make the right choice for Kannon and his future.
I believe our conversations will continue to help me out...Kannon's insight on life remains to be uncanny.
After all, believing all of this makes me smile and god knows I needed to.
peace :)
Thursday, June 21, 2012
where do we go from here...
I slept in my daughter's bed last night, alone... simply because it felt like the thing to do.
Maybe I wanted to feel like a kid again...without responsibility, without the weight of daily life getting to me.
The past month has been one of absolute strain and my heart is so heavy.
I hate to come back to my writing after taking a break and come out with this...but this blog is about Autism mostly, and ALL that comes with it.
I need to write this all down in hopes after I am done I will feel better, renewed, maybe even at peace with all that is surrounding our family right now.
To sum up the cause of the stress is this:
California passed a mandate stating that all health insurance companies are required to provide ABA (Applied Behavioral Analysis) therapy services to all children/adults whom have a clinical diagnosis of Autism.
Now, first I will say thank god.
Thank god for those families who never had the resources or time to fight for services now will receive some kind of support/therapy for their child.
All children desperately need these services...I cannot express this enough to those who are trying to educate themselves on this disorder. ABA therapy is hands down one of the most effective tools in managing Autism and hopefully helping some recover...alongside speech therapy, OT, PT, etc...
Secondly however for families like myself, who already fought so hard against the state for services may be getting all we fought so hard for taken away...some of us.
Unfortunately this will be us.
Unfortunately Kannon will not be able to stay with his current ABA team since his health insurance company provides their own form of services.
"Provide" is such a loose term.
They only recently assembled team(s) of therapists to provide therapy because the state told them they had to.
Their standard of whom they are allowing to provide these life saving services to our children is a joke. I may as well go outside and pick out complete strangers with NO experience in ABA and allow them to work with Kannon. No joke.
Instead, they refuse to sub-contract out to a willing, licensed and experienced provider whom already has a program in place...they think the better option is to pull him out of his current ongoing therapy program.
Take him out of a team of therapists who have been working one on one with him for the past 4 years, into a completely different environment and try to figure out where he is...and go from there.
Pull him out of a program that took years and years to put in place, years of trust gained, and years of intrusive emotional therapy that has brought Kannon as far as he is today.
Those of who who have followed my blog know how hard Kannon has fought for every day, for every word spoken, for the simple ability to function in day to day activities.
I'm sorry but this is a complete freaking nightmare.
Any parent out there who has a child with Autism knows this will be catastrophic.
Taking him out of an existing routine that has been his life for 4 years, taking him away from therapists who are like family to him...ones who worked years to gain his trust and compliance.
Starting him all over again in this whole process...
Taking him out of his routine that he knows, trusts, and that is working for him.
I can't even type that without breaking down.
Never mind all the time, energy, and financial strain it took me to obtain these services for Kannon, but to just take them away and not even try to work with families is irresponsible and idiotic.
I have spent hours on the phone making phone call after phone call to try to come to some sort of resolution for both parties, and obviously with no result.
My heart is so upset for Kannon.
How is he going to do this again?
Can he do this again?
Can I do this again?
Can he trust a whole new program with all new people and methods...
A big part of me wants to believe it will all work out, that maybe change is a good thing for Kannon.
And then my heart remembers he has Autism, and Autism does not like change...
In fact it cannot even process it.
It shuts down, regresses and hurts those with Autism.
Change in this case, is not a good thing.
I have to find the silver lining in this situation somehow...just as we have to do living daily with Autism.
But this one may just knock me flat on my ass.
And not just me.
It may just knock down Kannon, and all he has worked for over the years...all I have wrote about and shared with you.
Someday families won't have to go through such decisions made without their consent or control.
Someday services will be abundant, effective, and of the highest quality.
Someday we will have choices about what services/programs are best for our children without having to pay thousands of dollars for them.
Someday more than just those of us living with Autism will be educated about the disorder and compassionate to the cause....
Unfortunately I don't feel better about it after writing this all down.
But thanks for letting me share.
peace.
Maybe I wanted to feel like a kid again...without responsibility, without the weight of daily life getting to me.
The past month has been one of absolute strain and my heart is so heavy.
I hate to come back to my writing after taking a break and come out with this...but this blog is about Autism mostly, and ALL that comes with it.
I need to write this all down in hopes after I am done I will feel better, renewed, maybe even at peace with all that is surrounding our family right now.
To sum up the cause of the stress is this:
California passed a mandate stating that all health insurance companies are required to provide ABA (Applied Behavioral Analysis) therapy services to all children/adults whom have a clinical diagnosis of Autism.
Now, first I will say thank god.
Thank god for those families who never had the resources or time to fight for services now will receive some kind of support/therapy for their child.
All children desperately need these services...I cannot express this enough to those who are trying to educate themselves on this disorder. ABA therapy is hands down one of the most effective tools in managing Autism and hopefully helping some recover...alongside speech therapy, OT, PT, etc...
Secondly however for families like myself, who already fought so hard against the state for services may be getting all we fought so hard for taken away...some of us.
Unfortunately this will be us.
Unfortunately Kannon will not be able to stay with his current ABA team since his health insurance company provides their own form of services.
"Provide" is such a loose term.
They only recently assembled team(s) of therapists to provide therapy because the state told them they had to.
Their standard of whom they are allowing to provide these life saving services to our children is a joke. I may as well go outside and pick out complete strangers with NO experience in ABA and allow them to work with Kannon. No joke.
Instead, they refuse to sub-contract out to a willing, licensed and experienced provider whom already has a program in place...they think the better option is to pull him out of his current ongoing therapy program.
Take him out of a team of therapists who have been working one on one with him for the past 4 years, into a completely different environment and try to figure out where he is...and go from there.
Pull him out of a program that took years and years to put in place, years of trust gained, and years of intrusive emotional therapy that has brought Kannon as far as he is today.
Those of who who have followed my blog know how hard Kannon has fought for every day, for every word spoken, for the simple ability to function in day to day activities.
I'm sorry but this is a complete freaking nightmare.
Any parent out there who has a child with Autism knows this will be catastrophic.
Taking him out of an existing routine that has been his life for 4 years, taking him away from therapists who are like family to him...ones who worked years to gain his trust and compliance.
Starting him all over again in this whole process...
Taking him out of his routine that he knows, trusts, and that is working for him.
I can't even type that without breaking down.
Never mind all the time, energy, and financial strain it took me to obtain these services for Kannon, but to just take them away and not even try to work with families is irresponsible and idiotic.
I have spent hours on the phone making phone call after phone call to try to come to some sort of resolution for both parties, and obviously with no result.
My heart is so upset for Kannon.
How is he going to do this again?
Can he do this again?
Can I do this again?
Can he trust a whole new program with all new people and methods...
A big part of me wants to believe it will all work out, that maybe change is a good thing for Kannon.
And then my heart remembers he has Autism, and Autism does not like change...
In fact it cannot even process it.
It shuts down, regresses and hurts those with Autism.
Change in this case, is not a good thing.
I have to find the silver lining in this situation somehow...just as we have to do living daily with Autism.
But this one may just knock me flat on my ass.
And not just me.
It may just knock down Kannon, and all he has worked for over the years...all I have wrote about and shared with you.
Someday families won't have to go through such decisions made without their consent or control.
Someday services will be abundant, effective, and of the highest quality.
Someday we will have choices about what services/programs are best for our children without having to pay thousands of dollars for them.
Someday more than just those of us living with Autism will be educated about the disorder and compassionate to the cause....
Unfortunately I don't feel better about it after writing this all down.
But thanks for letting me share.
peace.
Wednesday, April 18, 2012
The paths we walk in life.
The hardest thing about being Kannon's mother is reminding myself that I need to take time for me.
I need to allow myself selfish moments and actions that are done without hesitation or guilt.
I have come to a place that I allow myself to inhale all the blessings around me and to act upon certain impulses that arise.
I allow myself to be free.
To be happy.
I have found in the past that it was near impossible to allow anything for me.
To let myself have a certain thought or object I wanted to have...
I just put myself in auto pilot mode and in the mind set that I was there only to care for and protect Kannon.
How wrong I was in not allowing myself to continue what every human deserves and needs to grow.
I wasn't allowing the universe to do it's magic that I hoped for internally every single day.
The honest truth was that I didn't think I deserved it.
I didn't think that because my beautiful son had chosen the path he did that I wasn't allowed my own path too.
I was literally walking behind him on his path every single step.
Now I know I should have been walking my own path near his...still within reach, still within sight...but my own path...not his.
As a parent this may be the toughest thing to allow in our hearts.
It may take a lot of running into your own child on their path before you realize you really aren't helping them at all...you are forgetting your own birth right by not walking your own path.
I recently read an article that broke down all emotions within me and lead me to a higher place of compassion and hope for Autism.
I read about a mother here in California who after caring for her son with Autism for over 20 years decided she could no longer handle it.
I obviously do not and will not speculate on the "whys", but a piece of my heart did go out to her past life and what she did for her son every single day.
This mother felt so alone and helpless that the only alternative in her mind was to kill her son, then herself.
I still close my eyes every now and then since reading this story and pray for her soul...for her son's soul.
May they now be at peace.
I do the same thing every single day for myself and every other person who is raising a child with Autism.
I pray for peace, hope, and a better tomorrow.
I hope someday we all can walk our own paths and feel the earth beneath us...
Feel grounded, feel the sunlight warm our souls as we journey through this life.
Be happy and know that we can walk beside our children without the fear and worry of them falling behind, or falling down.
As some of us know with Autism the fears are everywhere and come up every hour of every day...
All the unknowns are very unsettling and can knock you off balance, but as long as there is solid ground to fall on we can always get up and continue...to keep moving forward on our own pace.
I will be taking some time off from my blog,
All is wonderful, and I will be back soon...
I just need some time to walk my own path.
peace :)
I need to allow myself selfish moments and actions that are done without hesitation or guilt.
I have come to a place that I allow myself to inhale all the blessings around me and to act upon certain impulses that arise.
I allow myself to be free.
To be happy.
I have found in the past that it was near impossible to allow anything for me.
To let myself have a certain thought or object I wanted to have...
I just put myself in auto pilot mode and in the mind set that I was there only to care for and protect Kannon.
How wrong I was in not allowing myself to continue what every human deserves and needs to grow.
I wasn't allowing the universe to do it's magic that I hoped for internally every single day.
The honest truth was that I didn't think I deserved it.
I didn't think that because my beautiful son had chosen the path he did that I wasn't allowed my own path too.
I was literally walking behind him on his path every single step.
Now I know I should have been walking my own path near his...still within reach, still within sight...but my own path...not his.
As a parent this may be the toughest thing to allow in our hearts.
It may take a lot of running into your own child on their path before you realize you really aren't helping them at all...you are forgetting your own birth right by not walking your own path.
I recently read an article that broke down all emotions within me and lead me to a higher place of compassion and hope for Autism.
I read about a mother here in California who after caring for her son with Autism for over 20 years decided she could no longer handle it.
I obviously do not and will not speculate on the "whys", but a piece of my heart did go out to her past life and what she did for her son every single day.
This mother felt so alone and helpless that the only alternative in her mind was to kill her son, then herself.
I still close my eyes every now and then since reading this story and pray for her soul...for her son's soul.
May they now be at peace.
I do the same thing every single day for myself and every other person who is raising a child with Autism.
I pray for peace, hope, and a better tomorrow.
I hope someday we all can walk our own paths and feel the earth beneath us...
Feel grounded, feel the sunlight warm our souls as we journey through this life.
Be happy and know that we can walk beside our children without the fear and worry of them falling behind, or falling down.
As some of us know with Autism the fears are everywhere and come up every hour of every day...
All the unknowns are very unsettling and can knock you off balance, but as long as there is solid ground to fall on we can always get up and continue...to keep moving forward on our own pace.
I will be taking some time off from my blog,
All is wonderful, and I will be back soon...
I just need some time to walk my own path.
peace :)
Monday, April 2, 2012
My hope for awareness.
1 in 88 children WILL HAVE AUTISM.
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined.
This statistic is nothing short of devastating.
Devastating because there is so much more we need to do for Autism.
SO much more awareness, education, resources and funding needs to happen.
Autism receives approximately 5% of the government research funding of many less prevalent childhood diseases.
Leukemia: Affects 1 in 1,200 / Funding: $277 million
Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
Autism: Affects 1 in 88 / Funding: $79 million
If you don't already know someone who is affected by this disorder...you soon will.
With numbers like this we need to understand what we are dealing with and how we can help.
We have to educate adults and children about Autism, so that those of us living with it can function in society without the added stress of being judged or misunderstood.
To recap, just as examples, over the past few years Kannon has been pushed off a 15 foot playground, had sand dumped all over him, been pushed down to the ground and kicked, laughed at in his face, spit on, called "stupid" "retarded" "dumb" "weird" "idiot"...and at the end of most days he is always smiling, happy, and on some occasions he wiped the tears from my face.
I have had parents tell me I needed to "take control of my child", "keep him quiet" and "get him under control"
I have also been glared at, had eyes roll at me and disapproving head shakes galore.
Our family has also had to empty our pocketbooks to help pay for therapy for Kannon.
At one time our monthly expenses were up to almost $6000 a month, just for services alone...
Not to mention the special diet, supplements, and medicine Kannon needed.
It can be beyond overwhelming.
With the lack of funding and education we have a very long road ahead of us.
There are still so many unknowns in relation to the disorder, the professionals who deal with it and of course the families affected by it...we are the ones who have to fight harder for ourselves and our children...and ultimately the disorder.
There is not a day that goes by that I wish I could just take a deep breath and not have a heavy heart due to all the unknowns I will face.
Will Kannon ever recover from Autism?
Will he ever live on his own without me having to take care of his basic self help needs that so many take for granted?
Will I be able to physically and emotionally care for him until the day I die?
Will I have to someday watch him live in a care facility and go "visit" him instead of being able to maintain a sense of freedom for and from my own child?
Those are the "bigger" worries I have...
But let's not forget the smaller, more in your face ones too.
Like, will Kannon ever stop yelling instead of just talking in a normal tone of voice?
Will he ever stop flapping his hands and repeating himself over and over and over again?
Will he ever sleep through the night consistently?
Will he ever be able to have a conversation with me?
Will my daughter forgive me for having to put so much time and energy into Kannon?
It is all too heavy to contemplate, so I don't.
I wake up every day, thank my angels for what I have and move forward.
I thank god for allowing me to be a mother, and for all the life lessons I have learned so far.
Also for bringing into my life other mothers that I have met through living with Autism...amazing, strong, honest women who have become my closest friends and give me strength through their actions.
You can live with Autism.
You can fight for yourself and your child.
But you will need help, you will have to open your mind and heart to new roads that you never thought possible.
Autism throws every curve ball possible at you and your life...just be prepared for a bumpy ride and you will be fine.
You can be happy every day and not worry about all the unknowns.
Perspective allowed me these freedoms.
I share my stories for hope of a better tomorrow for Autism and those living with it.
I never want pity, praise, or a pat on the back.
All I want is for people to open their hearts and minds and realize there are other possibilities out of their comfort zone.
That there are other types of lives to be lived, and not to be judged.
I have changed my perspective because I had to.
Now it is societies turn to change theirs.
peace :)
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined.
This statistic is nothing short of devastating.
Devastating because there is so much more we need to do for Autism.
SO much more awareness, education, resources and funding needs to happen.
Autism receives approximately 5% of the government research funding of many less prevalent childhood diseases.
Leukemia: Affects 1 in 1,200 / Funding: $277 million
Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
Autism: Affects 1 in 88 / Funding: $79 million
If you don't already know someone who is affected by this disorder...you soon will.
With numbers like this we need to understand what we are dealing with and how we can help.
We have to educate adults and children about Autism, so that those of us living with it can function in society without the added stress of being judged or misunderstood.
To recap, just as examples, over the past few years Kannon has been pushed off a 15 foot playground, had sand dumped all over him, been pushed down to the ground and kicked, laughed at in his face, spit on, called "stupid" "retarded" "dumb" "weird" "idiot"...and at the end of most days he is always smiling, happy, and on some occasions he wiped the tears from my face.
I have had parents tell me I needed to "take control of my child", "keep him quiet" and "get him under control"
I have also been glared at, had eyes roll at me and disapproving head shakes galore.
Our family has also had to empty our pocketbooks to help pay for therapy for Kannon.
At one time our monthly expenses were up to almost $6000 a month, just for services alone...
Not to mention the special diet, supplements, and medicine Kannon needed.
It can be beyond overwhelming.
With the lack of funding and education we have a very long road ahead of us.
There are still so many unknowns in relation to the disorder, the professionals who deal with it and of course the families affected by it...we are the ones who have to fight harder for ourselves and our children...and ultimately the disorder.
There is not a day that goes by that I wish I could just take a deep breath and not have a heavy heart due to all the unknowns I will face.
Will Kannon ever recover from Autism?
Will he ever live on his own without me having to take care of his basic self help needs that so many take for granted?
Will I be able to physically and emotionally care for him until the day I die?
Will I have to someday watch him live in a care facility and go "visit" him instead of being able to maintain a sense of freedom for and from my own child?
Those are the "bigger" worries I have...
But let's not forget the smaller, more in your face ones too.
Like, will Kannon ever stop yelling instead of just talking in a normal tone of voice?
Will he ever stop flapping his hands and repeating himself over and over and over again?
Will he ever sleep through the night consistently?
Will he ever be able to have a conversation with me?
Will my daughter forgive me for having to put so much time and energy into Kannon?
It is all too heavy to contemplate, so I don't.
I wake up every day, thank my angels for what I have and move forward.
I thank god for allowing me to be a mother, and for all the life lessons I have learned so far.
Also for bringing into my life other mothers that I have met through living with Autism...amazing, strong, honest women who have become my closest friends and give me strength through their actions.
You can live with Autism.
You can fight for yourself and your child.
But you will need help, you will have to open your mind and heart to new roads that you never thought possible.
Autism throws every curve ball possible at you and your life...just be prepared for a bumpy ride and you will be fine.
You can be happy every day and not worry about all the unknowns.
Perspective allowed me these freedoms.
I share my stories for hope of a better tomorrow for Autism and those living with it.
I never want pity, praise, or a pat on the back.
All I want is for people to open their hearts and minds and realize there are other possibilities out of their comfort zone.
That there are other types of lives to be lived, and not to be judged.
I have changed my perspective because I had to.
Now it is societies turn to change theirs.
peace :)
Tuesday, March 13, 2012
I don't care what anyone thinks, or says.
Such a powerful notion.
It takes a strong mind, calm body, and pure spirit to really live by this mantra.
At least that is my opinion based on my own personal experience with trying it out on myself.
I do great about 90 percent of the time I think.
And considering the constant "thoughts" I find myself being presented with or involved in every day, I think that's pretty damn good.
It is a great daily life exercise and one that has taught me the most about myself and allowed me to really observe my own thoughts with great care and emotional intelligence.
And...it took me a long time to get to this 90 percent place...a long, winding road...but I got there eventually.
Anyways, enough about me.
Today as Kannon was sitting at the table cutting out circle after circle and pasting them into a whirlwind of patterns all connecting, he stopped all of a sudden and looked at me...
"Momma..."
"Yes buddy what's up?!"
"I am happy....( he gives me an honest smile )"
"I like art...( he holds up his circular creation )"
"Well that's awesome Kannon...being happy is a good thing..."
"I ran today...I ran in the sun..."
"Got lots of sand in shoes..."
"I know buddy...I saw all that sand, but I am so happy you had a good time"
"It's ok momma, don't be mad at sand...I am happy"
Then out of nowhere before I could even break a smile, he says this with both hands up in the air...
"I don't care what anyone thinks mamma...I am happy"
Wow.
After he made his honest, pure statement he turned around and went back to work.
I am still smiling.
My baby boy is happy and he doesn't care what anyone says.
Well something is getting through to that precious soul of his.
Clearly he is learning what is important in life.
Running in the sun, doing whatever creative project makes you happy...getting sand in your shoes...smiling and throwing your hands up in the air with such honesty and proclaiming your freedom from judgement...
How did he learn this so early on?
Why did this take me so long to learn for myself?
Kinda makes my eyebrows curve in wonder.
Ironic that it took me having a son with Autism and having to face all the daily battles with myself, him, and society for me to finally be at peace with this mantra.
I guess sometimes it takes the polar opposite of what your soul needs and what it thinks it needs to crash together and open your eyes up for acceptance.
Sometimes unfortunately at the expense of Kannon I have learned the hardest human lessons that my soul had to face.
And yet after all he has been through, he can raise his arms in complete joy...
I don't care what anyone says, Kannon is truly an enlightened, intelligent, thoughtful soul.
I will throw my arms up and surrender to this notion any day :)
Such a powerful notion.
It takes a strong mind, calm body, and pure spirit to really live by this mantra.
At least that is my opinion based on my own personal experience with trying it out on myself.
I do great about 90 percent of the time I think.
And considering the constant "thoughts" I find myself being presented with or involved in every day, I think that's pretty damn good.
It is a great daily life exercise and one that has taught me the most about myself and allowed me to really observe my own thoughts with great care and emotional intelligence.
And...it took me a long time to get to this 90 percent place...a long, winding road...but I got there eventually.
Anyways, enough about me.
Today as Kannon was sitting at the table cutting out circle after circle and pasting them into a whirlwind of patterns all connecting, he stopped all of a sudden and looked at me...
"Momma..."
"Yes buddy what's up?!"
"I am happy....( he gives me an honest smile )"
"I like art...( he holds up his circular creation )"
"Well that's awesome Kannon...being happy is a good thing..."
"I ran today...I ran in the sun..."
"Got lots of sand in shoes..."
"I know buddy...I saw all that sand, but I am so happy you had a good time"
"It's ok momma, don't be mad at sand...I am happy"
Then out of nowhere before I could even break a smile, he says this with both hands up in the air...
"I don't care what anyone thinks mamma...I am happy"
Wow.
After he made his honest, pure statement he turned around and went back to work.
I am still smiling.
My baby boy is happy and he doesn't care what anyone says.
Well something is getting through to that precious soul of his.
Clearly he is learning what is important in life.
Running in the sun, doing whatever creative project makes you happy...getting sand in your shoes...smiling and throwing your hands up in the air with such honesty and proclaiming your freedom from judgement...
How did he learn this so early on?
Why did this take me so long to learn for myself?
Kinda makes my eyebrows curve in wonder.
Ironic that it took me having a son with Autism and having to face all the daily battles with myself, him, and society for me to finally be at peace with this mantra.
I guess sometimes it takes the polar opposite of what your soul needs and what it thinks it needs to crash together and open your eyes up for acceptance.
Sometimes unfortunately at the expense of Kannon I have learned the hardest human lessons that my soul had to face.
And yet after all he has been through, he can raise his arms in complete joy...
I don't care what anyone says, Kannon is truly an enlightened, intelligent, thoughtful soul.
I will throw my arms up and surrender to this notion any day :)
Monday, February 27, 2012
Beautiful memory
I vividly remember the first time Kannon experienced the ocean.
I remember my feet touching the sand as he stared down at the sand squishing up between his toes.
He squealed in delight...his hands waving and the biggest smile upon his face that never left the whole time we were there.
I remember walking up to the ocean with him, his tiny hand in mine.
I remember knowing this is my true home.
Growing up in Hawaii the ocean was always our playground.
I learned to swim in the ocean, I have so many pictures of my family playing there.
The smell of the ocean is undeniable.
It is something that is nostalgically implanted upon my senses that I know it will always mean everything to me.
It is where my heart is happiest...where I instinctively know I belong.
It was almost as if Kannon could read all these emotions running through my head and my heart.
As he literally ran in to the waves like they were reaching out to him to embrace him...he felt perfectly safe in their arms.
There is something magical about the ocean for Kannon.
It is a place he could spend all day if I let him.
He truly is at peace there and with it.
As I write this I can't help but flashback as well to September 2007.
We went to Hawaii to spread my dad's ashes in the ocean...to put him where he wanted to be in the end.
He made it clear when he was alive that he wanted no headstone, no cemetery to rest in eternity.
He wanted to be in the ocean, forever at peace with himself.
I remember the boat ride out to the middle of the huge ocean.
The peaceful sound of the waves crashing up against the boat, the birds flying all around us.
When we finally stopped the boat I walked over to my mom who then handed me my father's ashes.
I knelt down, said a prayer and let them go...for the first, or maybe it was the last time, I let him go.
I watched as they so beautifully floated out and down into the blue abyss of water.
He was finally home.
I can't help but believe every time I am at the ocean my dad is right there with me.
That the waves washing ashore kissing my feet are him...that the peace I feel while in it's presence is my father's way of comforting my soul as he did while he was physically here.
It is my place to go that I can talk to him and feel like he is really listening.
So that first day I took Kannon there, I know he was there.
I know he knew this was his grandson there...
The way the waves so gently rolled over to Kannon as he first greeted them had to be his arms reaching out to Kannon.
I watched him play for hours with the ocean as if it were his best friend...laughing, running, splashing...it was beautiful.
It was my way of sharing Kannon with my dad...of showing him how amazing he is.
I know he was there with us...I could feel it.
There are times Kannon will just sit at the shoreline and just stare out at the ocean.
He will watch the water brush up against his legs and just smile.
He will play with the gentle waves as they come to greet him, and honestly I never see him as peaceful, happy, and fulfilled as he is when he is there.
One afternoon while I sat and watched Kannon sitting on the shore I saw him lay down on the wet sand as the waves would just ever so perfectly come up right to his nose and go back...
He laid there for about 10 minutes letting the waves roll up to him and back while he just lay there.
I smirked thinking to myself about the amount of sand he probably had building up in his shorts at this point, when he slowly sat up waved a slow long wave to the last wave, stood up and came over to me.
"Momma I got kisses and I hear hugs...I said bye to them"
I still tear up when I relive that moment...
He is home.
It is magical.
Just wanted to share a beautiful memory :)
peace.
I remember my feet touching the sand as he stared down at the sand squishing up between his toes.
He squealed in delight...his hands waving and the biggest smile upon his face that never left the whole time we were there.
I remember walking up to the ocean with him, his tiny hand in mine.
I remember knowing this is my true home.
Growing up in Hawaii the ocean was always our playground.
I learned to swim in the ocean, I have so many pictures of my family playing there.
The smell of the ocean is undeniable.
It is something that is nostalgically implanted upon my senses that I know it will always mean everything to me.
It is where my heart is happiest...where I instinctively know I belong.
It was almost as if Kannon could read all these emotions running through my head and my heart.
As he literally ran in to the waves like they were reaching out to him to embrace him...he felt perfectly safe in their arms.
There is something magical about the ocean for Kannon.
It is a place he could spend all day if I let him.
He truly is at peace there and with it.
As I write this I can't help but flashback as well to September 2007.
We went to Hawaii to spread my dad's ashes in the ocean...to put him where he wanted to be in the end.
He made it clear when he was alive that he wanted no headstone, no cemetery to rest in eternity.
He wanted to be in the ocean, forever at peace with himself.
I remember the boat ride out to the middle of the huge ocean.
The peaceful sound of the waves crashing up against the boat, the birds flying all around us.
When we finally stopped the boat I walked over to my mom who then handed me my father's ashes.
I knelt down, said a prayer and let them go...for the first, or maybe it was the last time, I let him go.
I watched as they so beautifully floated out and down into the blue abyss of water.
He was finally home.
I can't help but believe every time I am at the ocean my dad is right there with me.
That the waves washing ashore kissing my feet are him...that the peace I feel while in it's presence is my father's way of comforting my soul as he did while he was physically here.
It is my place to go that I can talk to him and feel like he is really listening.
So that first day I took Kannon there, I know he was there.
I know he knew this was his grandson there...
The way the waves so gently rolled over to Kannon as he first greeted them had to be his arms reaching out to Kannon.
I watched him play for hours with the ocean as if it were his best friend...laughing, running, splashing...it was beautiful.
It was my way of sharing Kannon with my dad...of showing him how amazing he is.
I know he was there with us...I could feel it.
There are times Kannon will just sit at the shoreline and just stare out at the ocean.
He will watch the water brush up against his legs and just smile.
He will play with the gentle waves as they come to greet him, and honestly I never see him as peaceful, happy, and fulfilled as he is when he is there.
One afternoon while I sat and watched Kannon sitting on the shore I saw him lay down on the wet sand as the waves would just ever so perfectly come up right to his nose and go back...
He laid there for about 10 minutes letting the waves roll up to him and back while he just lay there.
I smirked thinking to myself about the amount of sand he probably had building up in his shorts at this point, when he slowly sat up waved a slow long wave to the last wave, stood up and came over to me.
"Momma I got kisses and I hear hugs...I said bye to them"
I still tear up when I relive that moment...
He is home.
It is magical.
Just wanted to share a beautiful memory :)
peace.
Friday, February 17, 2012
Restricting my inner dialogue. Putting my pride aside...
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.
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.
Monday, January 16, 2012
denial. one of my life lessons.
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 :)
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 :)
Friday, January 6, 2012
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 :)
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 :)
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