Friday, November 19, 2010

The Injustice of it all....

I know I may be just blabbing on and on, by the response I've had on FB to my last few posts I am led to assume everyone I know (including myself) has grown weary about the chance for Autism insurance reform in Michigan.  Howeva! After dropping the precious angels off at school this morning and enjoying my daily dose of adderall and coffee (teehee!) I was pleasently surprised when I opened up the trusty MacBook to find THIS!....

After the past 3 years of sleepless nights agonizing over the injustice of insurance companies and their discriminatory refusal to cover treatment for Autism, I am somewhat hopeful we may have a chance for reform in Michigan.  In this interview, I think I am the voice inside Brian Calley's head that is prompting him to speak.  I'm not sure I have these powers all the time- it might be a fluke entirely- but it's the truth.  Ok- the truth is I don't have powers of any kind except the power of advocacy and passion.  Brian Calley was speaking my language because he is one of us 'normies' that has a kid with the A word.  He realizes that being from a small town resources are non-existant, he also realizes the insurers discriminatory practices have created a lack of service providers throughout the state of Michigan.  This has also had devastating consequences in rural areas for people with Autism.  If insurers don't cover treatment for Autism, then who can afford to provide the treatment.  Do people think therapists work for free??  Pretty much parents are working to cover autism treatment and that is why I can't sleep at night.  

The reasons I can't sleep are many- one of which is because H has the A!  Did you know kids with Autism can often times suffer from insomnia and faulty melatonin production?  

When H was 2 I had a worse time sleeping because of the worry associated with fear and anxiety of WHO was going to help us.  WHO was going to provide speech therapy, OT, ABA, educational support, behavior support?  Ummm..the answer was pretty much- nobody!  True story- We only had 1 qualified SLP in the region, 1 qualified OT, no ABA consultants to speak of, behavior support?  What's that?  Nope, nada, nothin'.  This was all because of insurance......I had a talk with the BCBS guy once, he told me it would be too expensive if they covered therapy...FOR KIDS!

I also have a hard time sleeping because I see all the families affected by Autism in the northwest michigan region- to date we have approximately 310 familes...that's a lot of people affected!  Autism not only affects 1 person- it affects FAMILIES!  Being the Presidante of Autism Resource Network I have phone calls every week from scared parents who want to know where to go for help.  I got nada...nothin, nope, nada....  I have to tell them "sorry, I don't have any referrals but if you come to our parent meetings every month at least we can support eachother"  

Most disturbing- working at my job doing home visits for little ones, having a Mom cry to you because her little boy isn't talking and exhibiting signs of Autism.  What do you tell her?  Where does she go?  What do our local pediatricians tell their patients?  They got nothin' ideas...they hold off on a diagnosis or guess because they are just as stuck as everyone else...

GRRRR....more reasons!  Our schools are completely unable or qualified to do medical therapies and parents believe they ARE!!  Completely untrue!  So many parents are fighting, battling, angry, MAD AS HELL, because their kids aren't getting better because many people in 'da bidness' down in you know where (if you live in Michigan- you know where I'm talkin' about) think Autism is an 'educational problem' and should be addressed in the schools.  True story!  In my world we call this 'Old School Special Ed" meaning this is the belief before empirical peer reviewed studies showed the progress of people with Autism through therapies like Speech, ABA, OT behavioral and other therapies.  Yes...medicine has advanced and now it's time to adopt a new way of looking at people with Autism.

Last but not least....I know this might be a shocker to most, especially my doubter brother who laughed when I last called myself "a person of faith"...hahaha...  On the moral issue of abortion- (dum..dum..dummmmm)  Disclaimer (I am probably ruining any chance of running for office now...damn!)  I don't admit or adopt a political party affiliation because I don't believe it's anyone's business.. Yes, I am proud to be Catholic and the best part is I am a human being who believes it is our moral obligation to take care of our most vulnerable citizens- children!  If people use politics to lobby for Pro-Life efforts then how can they deny people with disabilities the medically necessary treatments they need to live a productive and happy life?  Yep, I said it...the Priest endorsed it- he agreed it was all about greed and I agree. probably won't read this lengthy, wordy, crazy post to the end...but if you do and you live in Michigan, call your Senator and tell him "Marlowe is getting tired of chasing you around the state complaining about Autism!" (I am kidding- but you could say that if you want) Tell him he has nothing to loose because supporting kids is a win-win situation and it's really the right thing to do.  I'm not sure Northern Michigan Senators support our legislation- I've never really gotten a clear answer but it would sure be nice to know wouldn't it?  

Never in my life have I ever had to put my family, reputation, or integrity on the line but I don't care anymore- what have I got to loose?  Money?  Got none- paid for therapy and my grandchildren's grandchildren will continue to pay......and the A word marches on....

Sunday, November 14, 2010

Really honestly truly

I think. I am. becoming....a meadia junkie!  Totally got the bug these days thanks to my pals Kellie and Jill (strong whistles and accolades).  Yesterday I even added friends to twitter ;-)  Yes- I feel like I just came out.

Most of the time I blog and write of facebook about things like Autism.  Obviously a cause dear to my heart since my little guy keeps our lives interesting. In our lives with the little guy, we have been known to throw the 'A' word around in comparison to his strange behaviors now and then.  I mostly associate his odd behaviors to his inheritance of his father's genetics, but some crazy doctor told me it was Autism.  Go figure.

Tonight I happened across a blog by autismarmymom where she mentioned the subject of parents not sharing with others about their kids Autism and it got me thinking....  I feel empathy...not sympathy, not sorry...but empathy for parents who feel they might be criticized or judged because of their child's diagnosis of Autism.  Heck...the first time I said the A word at a family event I thought my grandma was going to need the heimlich after she choked on her cake! (true story!)  I see this a lot with the families I work with at our nonprofit. From a therapist's point of view, the grieving process about their child's diagnosis is still fresh.  Now, I'm not criticizing anyone or saying any person is wrong or otherwise if they don't wish to share, but for me and my family, it has been a liberating experience because it has offered an opportunity for our community to have acceptance and become aware of Autism.

Nowwww.....I see that the older the boy gets, the harder it is to share his diagnosis with those who don't know.  When he was 3 years old he was a cute little blondie with a big smile and everyone would comment "you would never know!  Look how cute he is!"  I can assure you that as a 7 year old- having a massive tantrum isn't cute anymore.  Parents at school have ridiculed him and me, because of his behavior and maybe it's time I started shouting from the rooftops again "Hellooooooo.......the boy has Autism!"

Autism is what it's not an excuse persay, it is my responsibility as a parent to continue to teach him socially responsible behaviors appropriate to his disability.  Maybe it's difficult to shout the A word about your kid because you think others may think you are making an excuse?  Yea...maybe a little, but when you speak the A word to others- I believe you are spreading awareness and understanding among others.

People are afraid of people with disabilities's a fact.  I used to be.  I admit that people in wheelchairs or disabilities I'm not familiar with, kinda make me uncomfortable.  I'm not uncomfortable because I'm afraid of them, but because I don't want to offend them with my ignorance.  As a member of the state's disability council I have had the opportunity to hang out with some pretty cool people with developmental disabilities.  They have brought me into their world and helped me to understand what it's like to be them.  They have advocated for themselves by educating and accepting my ignorant ass and in return I have become more understanding...voila!

How do you help cure ignorance?  Educate them...bring others to understand your struggle.  That's how things get done.

Just my 2 cents...only two, because right now I'm broke.