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-

Autism's scary but Cancer's scarier

Autism's scary but Cancer's scarier- at least to a parent I guess.  Autism isn't usually something that is completely life threatening, we treat it's symptoms and as a parent we go through the motions.  We grieve the loss of the potential life our child might have had, and begin to move on to an acceptance of a "different" life and then begin to move on again- it's a process.

My friend Jill had a great way of talking about the grieving process a parent goes through when having a child with Autism and basically it's a never ending roller coaster of grieving and then starting all over again.  For some parents the grieving is harder than others, but I have found a sort of 'kinship' among my community of Autism parents that has supported me and driven me to become stronger and do things I never thought possible.

Five years ago, I met my sisters through an online chat/blog.  We started our own exclusive "island" that we know to be our safe haven, tucked away on the internet, exclusive only to us.  This Island is a place where we know not only our deepest darkest secret feelings about Autism, but we know mostly everything about eachother.  After a year of hanging out with my Island sisters, I found myself on a plane to Nashville to meet a bunch of women I only knew online.  Strange- I know, but the best risk I have ever taken.  These ladies have taught me I am stronger than I thought ever possible, and shown me unconditional love and support whenever I need it.  I love my sisters!

But the kinship of Autism didn't just begin and end on the Island. It has been four years since I met my better half- Nicole.  We met through our nonprofit- Autism Resource Network.  Together with our awesome comrades Myca and Chris, we have put together the most important parent support network in Northwest Michigan.  Nicole isn't just a buddy, girlfriend, co-worker, she's my sister.  She has taught me through her chilled out, and sometimes socially odd ways, that everything's gonna be ok.  She is complete opposite of me- she gets up early in the morning and goes to bed early.  She makes her bed, cooks, is crafty, organized, attentive, completely level-headed, did I mention organized?  Yea- that's my Nicole.  She rocks in a crisis.  She holds it together while I come completely unglued, dramatic and emotional.  The best part is that she totally lets me.  She just sits back and watches the show of my crazy, and then later in her calm manner and wisdomous way, tells me how it is, how she sees it, and helps me to move on.  Nicole knows my deepest darkest secrets about how I feel about Autism.  She somehow understands how I feel being about being a Mom to 4 kids when she has only 1 child.  Nicole gets me.  She doesn't judge and isn't afraid to kick my ass when I need a good ass kickin'- even when I don't want to hear it.  Fearless- yea, that's my Nicole.  Nicole is the reason I haven't closed up the shop on ARN many times, she brings me back to what's good and right and together we move on.

Nicole and I have solved the world's problems many times over hour long phone conversations, texting email and probably mental telepathy.  We have solved Autism.  We have found solutions and what-if's for every scenario.  In the world of Autism and ARN, Nicole is the brains behind the operation- I'm just the operation.  When you look at ARN you see me, but it's really Nicole.  She likes it that way, she's not an attention hog and loathes public speaking.

Since we have solved Autism- or at least in our own minds anyway.  What do we do about Cancer? Lymphoma? WHATTTT?

Yea- Nicole has Lymphoma, Cancer.  Big blow- we just found out yesterday.  What do you do with this?  I mean, we just started to get Autism figured out and now Cancer?  Honestly, I had this crazy fleeting thought of now running a nonprofit for Cancer?! I can't do it without my partner.  Nicole and I have been buddies through all this, and I've just begun to see the kinship of Autism.  Cancer is a dirty word....SSSSHHHHHHH!  Make it stop!

Not that easy.  I don't like it.  I actually hate it.  hate it.. hate .. hate it..  makes me want to scream.

My best friend Dawn died of breast cancer 7 years ago at the age of 32.  I will never forget because Harrison's birthday is on the day she died.  She knew we were trying to have another baby and were frustrated with the process,  a year after she died we had our baby.  Then 2 years later- we had Autism.  Through the grief, I found sweetness in a baby boy that melts my heart every time I see him.  It's really like no other.  I have compassion and joy when I think of the challenges we've been through.  Isn't that really weird?  Maybe I'm cracked, but it's true.  The thing I do know is Cancer was terrible.  It took my friend and left me empty.  What do you do about Cancer?

If Nicole and I have Autism we are a team, a force to be reckoned with.  Cancer??  What do we do with that?  I guess maybe she's my rock, and I feel like I'm not organized enough to rise to the challenge and kick her ass when she needs it kicked, or strong enough to hold it together when she needs support.  Maybe that's where all this ambivalence is coming from.

So- ok... Nicole- if you have the Cancer, I have the Crazy enough to match it.  Bring it on girlfriend!  We can figure it out and kick this Cancer's ass.  I know 4 years ago Autism was a scary beast but we tamed it and now Cancer is goin' down....