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.

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 :)

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 :)