The reason I can't sleep at night

I guess at times my blog becomes my speakers box.  I saw a man standing on a box once while visiting Speakers Corner in Londan.  The man was standing on his box talking about things that were important to him. 

Unlike a typical teenager, I was fascinated.  Free speech, a place to throw it out there...not too bad.  Until, you come up against people who don't agree.  What do you do then?  Do you argue?  Do you run away?  Or do you simply stay steadfast and true to what you believe and not give in to the dirty politics of it all? 

It's difficult to do.  The not giving in part.  It tests your patience, makes you crazy and can sometimes make you not be able to sleep at night.

Yeah, rising above it.  Rising above, can cause sleepless nights.  That's where I am.  No sleep and crazy thoughts race through my head.

So here's my free speechie. ( If you're a parent of a special needs kiddo, you will laugh because speechie is a routinely known word..haha!)

KIDS WITH AUTISM NEED HEALTH INSURANCE COMPANIES TO PROVIDE COVERAGE!

Did you hear me? It's pretty simple.  If you know me, you know that health insurance companies routinely discriminate against autism coverage.  Movements all over the country have lead to more than 27 states adopting mandates for autism coverage. 

I have a kid on the A-team.  He's 8.  He's perfect.  I love him just the way God made him.  I also know that he continues to struggle with things that all us normies take for granted.  My bank account, retirement and mailbox will also sing a song of the embarrassing amount of debt we have incurred trying to help my son, but I don't mind.  Wouldn't change him.  Wouldn't change it.

So....If you know me or e-know me.  Do me a favor.  If you live in Michigan, call these politico's below and leave them a message. It's pretty easy and tomorrow is a pretty important day for people in Michigan with autism.  It's pretty important to me and my family.

 E-love to everyone.  Thanks for attending my speakers corner.  And to answer my question, I will not go away.  I will be graceful, patient, steadfast and true to what me and more than 15,000 other families in Michigan know. KIDS WITH AUTISM NEED AUTISM TREATMENT COVERED BY HEALTH INSURANCE.

Afterall,  I am a lady ya know :-)

The politico peeps are below: Make sure to thank them too..

CALL THESE SENATE HEALTH POLICY COMMITTEE MEMBERS NOW! (leave a message)

Senator Tonya Schuitmaker (517) 373-0793
Senator Judy Emmons (517) 373-3760
... Senator Rebekah Warren (517) 373-2406

Say: "I am calling to ask Senator [name] to vote 'yes' on the package of autism insurance reform bills that are being taken up in committee tomorrow. Thank you."

Cutting SSI is NOT the answer dummy!

I guess this belongs on my blog but I just wanted to vent to my FB peeps...........

After reading this article on NPR( npr.org)I am absolutely furious and appalled at the stupidity of the people we have elected to make decisions on behalf of our nation.  I'm not sure if I have adopted a different set of morals than most politicians, or if maybe I am just a freakin' genius and have the ability to see that people who are vulnerable in our society NEED TO BE PROTECTED.  The needs of people with developmental disabilities are REAL and can not simply be ignored.  

The real issue in this article is pretty obvious.  We haven't been providing adequate and appropriate care (use of best practice, not stone age medicine and mentality) for people with developmental disabilities.  Our government has bowed down to big insurance companies and let them discriminate against people with developmental disabilities and mental illness for so long, that we have forced providers out of business.  You can't run a business if insurers deny your claims and patients aren't able to private pay.  When insurers use discriminatory practices, they create a LACK of providers. (try finding a good pediatric physical therapist for your kid who broke his leg if insurers don't provide coverage for kids with disabilities...they can't stay in business waiting around for your kid with a broken leg!)

 Today, the use of best practice and appropriate care for people with developmental disabilities is only available to those who can afford it (or are willing to bankrupt themselves).  Who is this helping?  Do tax payers get a break on taxes when the use of appropriate care and best practice helps an individual with DD or mental illness?  Yes.  Do insurers get a break when they provide coverage for best practice for people with DD and mental illness?  Yes.  

The answers are pretty simple and according to 99% (the other 1% being insurance providers and politicians) of the people I have ever talked to, my theory is not the theorm of a genius.  It's pretty simple actually. (Trust me-I totally cheated in Math and am not trusted with the check book)

When you treat people with developmental disabilities and mental illness with the appropriate care and best practice, you SAVE MONEY!  This happens by helping people achieve their best quality of life!  I can assure you (I refuse to cite sources here...college trauma) that the majority of people with developmental disabilities and mental illness would not HAVE to rely heavily on public support such as SSI, Medicaid, etc. if they received the treatment THEY DESERVE.  

I mean, c'mon, why NOT improve someone's quality of life?  Why not help ease the burden of families with special needs children?  Why not?? Why not?? Why not??

We're greedy that's why.  We are so selfish that we have allowed insurance companies to DISCRIMINATE against people with disabilities and mental illness.  We have purposely turned a blind eye because we are only worried about ourselves.  We think "It can never happen to me"....  Well, if it happened to me, it can happen to YOU too.  

Jesus is sad.  We have all allowed this.

Speak up, we all have a voice.

We were robbed....

We were robbed and I'm a little bitter....

I'm sure you can figure out this post has something to do with the 'A' word- Autism.  Over the holidays my cousin and her little boy (age 3) came to visit us.  The Captain and I were thrilled to have company, especially since this little guy is the next cousin in line to our 4 kids.  (I'm the oldest and my family is FINALLY beginning to produce offspring...go figure.)  So for 3 days we listened and watched this little cutie do all kinds of Normie 3 year old things like:

Yell "POOP!" randomly to get attention
Call his Mom "POOP!" when he wanted her attention
Call anyone around him "POOP! FART! STINKY" when he wanted their attention
Play with TOYS! (yes, this was totally random...we're not used to that here)
He even asked me for lunch and we sat down together and ate
We even played a GAME
He told me things...things he imagined, things he wanted to do, all about his dog....

So yea, Normie things... totally no fair.  The thing is, I saw how happy and excited the Captain was with the Normie kid.  Not that he doesn't just love H to pieces and get excited about his stuff- but it was kinda sweet to see him going gaga over this little cutie too.  He is truly a wonderful father.  His patience with the Normie 3 yr old cutie was golden- he loved him up, played with him and even gave him time-outs!  I loved it!

At first I was unsure what this was all about, me and the Captain going gaga over a 3 yr old Normie kid. I thought it was because he is related, but today I realized when talking to my Auti-peep it was a lot more than this.

You see, I think we were robbed.

We never got to have this kind of fun with H when he was 3.  By the time he was 3, he was immersed in therapy and we were immersed in all kinds of fun things like grief, financial hell, dispair, humility and the 90000 other emotions that go along with having a special needs child.  Needless to say H was also not interested, nor EVER interested in being typical.  His childhood has been one that he has probably found joyful, while we sat around and tried to figure out how to accpet the fact that we had no idea what exactly it is he found joyful.  Does that make sense?

I believe nature takes a course of developmental progression with kids.  As parents, we naturally follow along instinctively.  Just like they develop to the next level, we naturally anticipate the next step with them.  With H, we would anticipate but it never came.  Like I told my Auti-peep today, I'm still waiting on those steps.  Will they ever come?  If they do or have come, I probably wouldn't recognize it if it slapped me in the face because it isn't what nature typically predicts.

So yes, I know some will read this and think I have issues not accepting my child's special needs...shame on me for wishing he was a Normie- but I can tell you I love that little bugger who has turned our lives upside down and inside out.

 I love the boy, but today I hate the A.  We were robbed.  No fair.

I'm pretty sure my Autistic son is normal- Joke's on them!

After reading this ridiculous letter the Michigan Chamber of Commerce sent to its members, I came to the conclusion that I'm pretty sure my Autistic son is completely normal and these goons are the ones who need therapy!!  Seriously?  Who wrote this anyway?  If you'd like to get a good laugh or even cry about the stupidity of the lobbyists running our state government- give this a look Michigan Chamber opposes Autism treatment

I won't bore you or go into why this legislation is more than just right- it's ethical.  I'm not sure how someone can go home from their well-paying job, in their nice car, to their big house, and greet their normie kids at the door- all while knowing they just did a hard days work off the backs of small business owners who have had to work their asses off to pay for their kids Autism.  Does that sound 'NORMAL' to you?  Sounds to me like they might need some social skills therapy.  Hope their health insurance covers it!

How did I get so grumpy? oh yea- I went to bed at 1am to be awoke by the extreme loose bowles of a little boy with Autism.  No doctors here in our area can help, it must have been the gluten free fries from Culvers. Sue me but I'm not up for the 4 hour drive to Detroit because I have priorities ya know? Christmas is coming and thanks to the bankrupting costs to cover H's therapy, he knows enough to realize he hates the doctor, and loves toys (ok-maybe he likes 'things')!  Sad isn't it?

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!....

Lt. Gov elect- Brian Calley Speaking about Autism!

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'....no 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.  

So...you 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....

Really honestly truly

I think. I am. becoming....a ....social 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 is....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 ...it'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 awareness...help others to understand your struggle.  That's how things get done.

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

Who is this kid anyway?

My question is, where do we come up with our vision of the future and what teaches us about social change?  What is the antagonist behind our young people that teaches them about the world.  Is it interest?  Upbringing?  Is this something that is taught to our kids through our own curiosity as adults and they learn?  Interesting to me.

My daughter just loves concerts.  As a kid I only went to 1 concert and it was loud, rowdy and drug filled.  I guess it was Def Leppard (is that how you spell it?) but I couldn't tell you anything about them because they were as big as a penny, and we were in the nosebleed seats.  I spent my $20 and came home with a t-shirt.  I didn't care.  Long haired rock stars wern't sexy to me, they were scary!

Last summer we went to a concert together.  It was completely out of my comfort zone- I mean REALLY.  It was a band called Boys Like Girls.  I used to make fun of their name. I stood in the crowd horrified as the lead singer was horn doggin' the young girls.  He made sure to take the opportunity to yell 'FUCK' as often as he could (shame on you Martin Johnson, although today I think he's tried to clean it up a bit).

There were about 4 bands that night- some good, some were ok.  Some talented kids- just trying to have a good time in a sea of screaming teenage girls.  Why not I guess?

I think it was almost the last act and a band called Never Shout Never played.  This kid was amazing- he had a harmonica, mandolin, guitar, tambourine- the whole sha-bang.  He is a one man band- he is Never Shout Never.  Totally cool! Adorable little guy they call Christofer Drew.  No shoes, skinny jeans with holes in the knees, too many tattoos, those awful ear-plug things...punk rock hair but nonetheless- he was adorable. 

Adorable because of his musical talent and the music he sang was pretty cool.  His inspirational music stories about social change are something that should be written by someone my age! (not completely old, just moderately old- aged like fine wine- with experience)  

Where does this kid come from and do his parents realize what a brilliant mind he has?
The kids tell me he was a tennis prodigy at one time.  The teenager really wants to get him on the court and see if the rumors are true.  He has an amazing ability to inspire people through his music because Christofer's music is all about change- the words he sings are the things I think about every day as I sit in my classes and go to work.

Where does this come from? As a therapist and Mom, I'm dying to know!  His story is interesting to me, his music is personal and motivating.

The kids love this kid- he has a kind of hippy following of mostly young girls.  The teenage daughter has mostly moved on to other music/bands and left me behind.  I've seen interviews and performances by Christofer that have left me saddened to think he's going down the wrong path, but as he's just a young kid, I think he is somewhat entitled.  We are all destructive until we find out who we really are I guess- I just hope he hears his own inspiration.  From what I gather from twitter- Christofer is a pretty wise kid- he tweets about things like being a vegan, Tao Te Ching, peace, love, and everyone should get along... 

Yes Chris- we all want change and we should all get along.

So as I stood alone in a sea of hippy teenagers at Warped tour (did I really do that?), I enjoyed the best performance ever.  I know the teenage daughter thinks I'm a 'creeper' but one of these days I will have my picture taken with my boy Christofer Drew and put it in my office.  A souvenier of my journey to many rock concerts and a little something for myself I guess.

Us Mom's have to find the positive in every day.  If you can't beat em', might as well join em' .  Do you know what your teenager is up to?  I'm the Mom standing in the back- analyzing- diagnosing- trying to find the good.

Peace-