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

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.


1 comment:

  1. While this is such an unfortunate circumstance, what you are doing--writing about the horror of such mandate, the changes it would require for Kannon to deal with, for you as a mom, for all of you as a family, is a really great step in speaking out to the community and letting them know that what the government is doing --completely taking for granted or simply not considering families like you who have already established Kannon's progress with already effective therapists, is inexcusable. Kary if only this situation were here in the Philippines, I would be the first in line to create an uproar to ask the question, " what about us???" Nevertheless, I feel for what you and your family are going through right now-- shall I say bureaucratic nightmare? ...my prayers and love are with you always...biggest hugs...