Language...

I am a person with an autism spectrum disorder...

The important part of that is that i am a PERSON. I work very hard to advocate for the rights of people with disabilities, including myself. In the last 9 months i have had the priveledge to speak with my state senator and his staff as well as my representatives staff. I have been able to share my story and hopes for equality with congressmens offices and county commissioners. I have done work towards promoting the education of first responders regarding best practice methods for working with individuals with autism. I have been lucky enough to hear dozens of the countries leading experts on disability rights.

and i have yet to meet one individual that does not prefer person first language when describing themselves or their child.

what alarms me in all this is that i have recently encountered another blog. Autism Diva that has no respect for this concept. I do acknowledge that people first language is a choice. but when i commented on her blog about her use of reffering to the community as a whole as "autistic people" I was called overly sensitive. as well as presumptious, for presuming that disabled people care. Well i am a disabled person and i care.

on a group i am a member of the main title is "for people suffering from aspergers syndrome"... again here we are with the language. I am not suffering. There are days that are harder than others, and there are days that i drive my partner nuts simply being me. But this is all part of who i am.

Some refer to people first language as cumbersome and unneccasary, but i differ. If we want to be seen as people same as others we need to adjust how we allow ourselves to be labeled.

Language is a tricky thing. We speak freely and often but how much of the time do we think about what we are saying and how it sets a precident for how people view us or our situation.

today i challenge you to think before you speak... how does what you say set a precident?

Playing favorites...

This is my beautiful neice Lavender... and thats why i'm writing today because i'm annoyed beyond beliefe... My estranged other sister has decided she is the favorite auntie and has started sending me vicious e-mails calling me a druggy and a drunk and a dike... yes a DIKE.... lol nice to know i'm a water feature... i prefer that to being called a dyke by some ignorant welfare queen. It pisses me off though cause i've worked so hard to be clean (3 1/2 years now) and i dont drink a lot (hell i'm still working on the 6 pack from st.patricks day)

I'm annoyed by all of this cause i believe that every aunt has the right to believe they are the favorite... and i'm sorry that i dont have more time to spend with my niece and nephew but lets me realistic, i have a demanding job and i go to school full time. But i see them every chance i get. Fact of the matter is what i am doing the rest of the time is building a life for myself... being a positive role model.

My nephew Tyreal has a disability and i spend a lot of my spare time lobbying for disability rights and funding. This is in part because of him but also because both my brother and I have autism spectrum disorders. But in the long run i think the impact i have on disability related legislation will have a much greater impact on my nephews life and well being than an afternoon watching sponge bob...

I guess the gist of this is that i hate ignorant people...

Dear Mr. President...

With everything going on in the political climate right now it really struck me hard to hear this song the other day on the L-word. and to think about what i would like to tell my president if he would take a walk with me. I would like to tell him what its like to try to support yourself on minimum wage with a disability, what its like to live check to check 6 people crammed in a tiny trailer to make sure that my brother and sister are provided for and that there is always someone to watch my brother cause we cant afford to pay for childcare for a child with special needs. Tell him about how my parents jobs are always at risk cause they work in fields supported by human services federal and state funding, how his bombs and his war put my family at risk of losing everything. I want to tell him what its like to be married, with out any protection or benefits, what its like to e discriminated against for being in love. and i'll tell him what it was like for stinky to be 6 with his dad far away in iraq. what its like to watch a child grow up with out his father. and thats just the tip.

I have so much respect for Pink for putting this song out there. Its wonderful to see a mainstream artist putting out such a contreversial piece.

Let me pose this question... what would you tell our president...

"Dear Mr. President"

Dear Mr. President,

Come take a walk with me.

Let's pretend we're just two people and

You're not better than me.

I'd like to ask you some questions if we can speak honestly.

What do you feel when you see all the homeless on the street?

Who do you pray for at night before you go to sleep?

What do you feel when you look in the mirror?

Are you proud?

How do you sleep while the rest of us cry?

How do you dream when a mother has no chance to say goodbye?

How do you walk with your head held high?

Can you even look me in the

tell me why?

Dear Mr. President,

Were you a lonely boy?

Are you a lonely boy?

Are you a lonely boy?

How can you say No child is left behind?

We're not dumb and we're not blind.

They're all sitting in your cells

While you pave the road to hell.

What kind of father would take his own daughter's rights away?

And what kind of father might hate his own daughter if she were gay?

I can only imagine what the first lady has to say

You've come a long way from whiskey and cocaine.

How do you sleep while the rest of us cry?

How do you dream when a mother has no chance to say goodbye?

How do you walk with your head held high?

Can you even look me in the eye?

Let me tell you 'bout hard work

Minimum wage with a baby on the way

Let me tell you 'bout hard work

Rebuilding your house after the bombs took them away

Let me tell you 'bout hard work

Building a bed out of a cardboard box

Let me tell you 'bout hard work

Hard work

Hard work

You don't know nothing 'bout hard work

Hard work

Hard work

Oh How do you sleep at night?

How do you walk with your head held high?

Dear Mr. President,

You'd never take a walk with me.

Would you?

Oh! and happy easter... hope the bunny was good to you... or your at least getting some deviled eggs and egg salad out of the whole deal!

An odd goodbye...

So the day before Valentines day my neighbors trailer caught on fire making it inhabitable... It was a scary night cause in a trailer park fire spreads like Herpes in a highschool. Well anyhow today was the day they had to tear down the trailer. It was really sad for me to watch the walls come down and see it gutted.

Partly cause i feel for what my neighbor lost. but also because i spent a large part of my youth there. I drank with the original neighbors when i was 18 and they were my age, Their girlfriends used to give me dating advice and do my hair. I had my last guy crush in those walls. I remember watching the neighbors and thinking they were so grown up and wanting to be like them. and now i'm their age. and the trailer is coming down.

Friends started families there, nights of laughter took place, many tears were shed. And now it is a skeleton of what once was. I know that the real value is in the moments and memories and not the actual structure, but it will be weird to look out the window and not see the deck i sat on and cried when my first serious girlfriend broke my heart, when another trailer goes up it will be odd knowing that Mike, Holly, John, Dean or Keitha never lived there...

mostly its unsettling to realize how fleeting everything is... How precious the moment really is.

Lord help Charter communications

So we got the internet and cable... Its been a long 3days but i think everything is where it should be... 5 technicians (well 4 but 2 visits from one) and a free month later...

We had nothing but problems getting to this point...

heres the break down...

Day 1
* the modem was installed in the wrong room
* the cable in the bedroom wasnt split to accomodate net access
* they didnt leave a remote for the second cable box (WHAT THE HELL WHO DOES THAT!)
* my LAPTOP was left on the floor by the technicians
* the whole damn thing took 5 and a half freaking hours!
* Showtime on demand refused to work (read: NO SHANE!)

Day 2
* they send another technician out TO FIX OUR INTERNET that wasnt broken
* Still didnt get a remote
* Showtime on demand STILL doesnt work
* spent 2 hours on the phone after the internet crashed and i couldnt watch the L word. I was transferred 11teen times including the the disconnect dept.... I was like DONT TEMPT me Bitch

Day 3
*one more technician...
* an ANGRY call to corporate...
* FINALLY got a remote and a month free...

I dont understand how hard this was gonna be I mean really... a trained monkey could do this... but apparently not a trained contractor... anyhow... On that note I'm gonna go watch the L word on demand... *crosses fingers* PRAY FOR ME

Back on the horse

where to begin. I finally got the internet at home so perhaps i can now begin to blog about the most mundane crap again.

It was a long day at work today puncuated by crazyness. A family came into the studio today with the sweetest 9 month old baby. he was the size of an 18 month old. and laughed and giggled at everyone.

I'm fueding with the bank yet again. I'm so devastated. It felt like we were finally getting ahead and then boom a pile of overdrafts that i swear up and down shouldnt be here. and of course K cant find he reciept to prove that the money should be there. I dont know what to do.

I cant believe that me and k have been together for 11 months. its been a rollercoaster ride. but wow we really have made it. I remember the last time i was in this place, with Chris like 2 years ago. so much has changed and i think about the places i have been and he experiences i have had. It seems so unreal. I dont even know where i would begin to tell the story.

but thats all for now... more to follow...

Watching Angels.

So this last week we headed back to Iowa to see K's family. WOW! thats a hell of a lot of people and a hell of a lot of kids. but what a blessing. While we were there K's sister went into labor and we got to be a part of the birth... what a miracle watching this tiny precious baby turn from tummy into a beautiful angel.

on that note... things are going great for me and K. we have been talking a lot more about the future and what we can do to make sure we have the strongest foundation possible. the trip was really good at bringing us closer together.

Mostly though its been a lot of the same old stuff... work and school....