Missed Yall!

[Guest guest]

Greetings, Aspires!

Have to say first that it's so nice to be home with yall again. I was on the

list for years, I think starting around 2002 after spending the previous year in

a whirlwind with my then preschooler son with Asperger's. It was a very

traumatic and violent and scary year, helping him adjust to every sensory

overload and meltdown imaginable. I left the list a few years back for lack of

internet... and many things have happened since then, both good and bad, which

I'm sure I'll touch on in future posts.

For now, let me say that my Jonah will be 15 in August, and his NT brother Noah

is 16, both over 6 feet tall and cutie pies! It's been a long road with

autism/asperger's and thought if we could make it this far that we would all be

OK. Well, now that I'm down the road a bit, lol, I'm seeing there's an even

longer stretch of trails to blaze ahead.

Looking back, I see nothing but endless sacrifices... most of which that paid

off and were well worth it. But many of which were excruciatingly painful,

unthinkable, and some just unspeakable. The result so far is that Jonah is

awesome, doing awesome, and has turned out to be the sweetest kid a mom could

have. AND turns out that he's the most caring and empathetic kid in our family.

Unless their told, most people wouldn't know anything had ever been wrong, much

less Asperger's. Still, there are no birthdays or Mother's Day celebrations in

my future with my family. Thanks to their father, who obviously has Asperger's,

none of them have any kind of lasting executive skills functioning, planning or

memory skills to speak of. All my hard work, modeling, and mentoring in that

area ceased to exist the day after I moved out of there. My birthday was a

couple weeks ago... got a phone call 5 minutes before leaving for work, only

after calling their Dad and reminding him again. (Nothing happens except on each

brand new day for them. They remember nothing, including what they ate that

day). They went with the Dad to see his 90 year old mother for Mother's Day. No

call. Nothing. Autism in our family is an out-of-sight, out-of-mind existence.

So it is all up to me to do everything for all of them. Exhausting even thinking

about it.

Bottom line is this... I started having serious health problems -- again. I have

spiking blood pressure problems that could stroke me out or give me a heart

attack at any time. Problem is that doctors can't give me any other BP medicine

because my heart rate and pulse are normally so low that anything else could

stop my heart. Living with my ex put me in peril with the BP thing many times --

paramedics came at least twice. (Four or more times since I've been out of

there). Once my ex told them to get out of his house while they were trying to

help me. I had a skull-splitting migraine, was projectile vomiting (which

finally brought the BP down), and I could not see at all... just scary blind...

and during the worst of it, tells them he has to go to bed so they needed

to leave. They thought he was joking and they laughed. He then yelled at them to

get out! Asperger's speaks and my BP goes off the chart.

I had to leave or I knew I wouldn't live to see my kids graduate from high

school. Couldn't survive another years-long court battle over custody and autism

again. So I taught my boys how to live with their alcoholic Asperger's brickwall

Daddy, got my passport, left this Georgia, and went to teach English in the

" other " Georgia, formerly of the Soviet Union. Best thing I ever did.

Unfortunately, their extremely salty food revved up the BP problem so had to

come back earlier than I would have liked. Teaching there, being part of that

warm, loving, collective community where it's hard to ever be or feel alone...

well, it was the HUGE dose of love and caring and sharing and normalcy and utter

peace that I needed. I miss that so much now. But I have another " home " in

Sachkhere, Georgia with them in my heart forever with my coteacher, students,

fellow teachers, principal, host family, and doctors (yes, they took me home for

dinner, too) forever! Thanks to the internet, I see and talk with them almost

daily.

So now that I'm back in Georgia, USA, I need your help with something. It's

become painfully clear for my very survival (talking life and death here) that

I'm going to have to apply for disability. I cannot depend on earning an income

and being consistently well for more than a month at a time -- even living away

from my ex's super-stress household. Yes, I have Asperger's, but I also have

PTSD starting when I was in the military in the early 1980's (to the Air Force's

credit, a tech instructor was discharged because of what happened), exacerbated

by a first ex-husband who put me in a hospital and stalked me, and my current

no-empathy Asperger's ex who falsely proclaimed my son didn't have autism and

dragged us all through the court system and worse, constantly trying to keep

Jonah from getting any professional help at all.

My health finally took a horrible turn for the worse by 2004, and as I was

trying to apply for disability then, an even worse unthinkable happening

occurred... I was sexually assaulted and the perp took my medical records in the

midst of my getting help from the VA and Social Security. Got a restraining

order and the perp admitted in writing what he'd done, got fired, and left the

state. Police had to recover my xrays and med records for me. All of this

confused the VA... who are easily confused anyway... and my attempts to get help

and disability from them became so stressful that I had to just walk away from

it at the time. (Now I know they would have automatically denied me, regardless.

More on that below).

Poor ... he was trying to help me on the phone re: " the man with the gun "

and I'm sure I totally stressed him out at that time. Me, too.

I finally determined that the best place for a mouse to hide was in the cat's

ear... and moved back in with my ex (strictly as housemates with our own rooms)

to raise our children together in 2005. All he cared about was the money and no

one saying the A-word (autism) in his home, so he ignored me and continued to

drink incessantly, I got to raise my sons mostly in peace with wonderful

neighbors who I celebrated life with, and life went on. Then, two years ago, my

ex changed his work hours so he was constantly around us... and things got

worse... my health took a dive again... and I finally had to choose my life and

ability to keep breathing... or staying there with my boys AND their Dad. He

started getting violent with me in front of the boys. I had to go. And it would

have taken a court battle to take my boys with me. I can't physically survive

that. So last summer, I left and went to teach in the " other " Georgia....

Bottom line is that... I cannot be around stressful situations at all now... at

all. It spikes my BP and I'm off to a hospital in an ambulance and it takes days

to get back to normal after the drugs they give me for the migraines. Now I'm

having the migraines without the headaches and they wake me during the night

with spiking BP's and blindness. This is very scary. So the remedy is... no

stress at all. Can't be around it. Can't survive it anymore. Will die and die

quickly if I let myself go there again. Not funny. At all.

So, I reaaaaaally need to find the Aspires member who applied for and got

disability through the VA. I think it was for PTSD, which aggravated his

Asperger's. I talked w/him in 2005 when I was trying to apply before. Or anyone

else whose been the VA or Social Security disability route.

When I first went to the VA, I couldn't talk because of the pain I was in

(partly from an abcessed tooth), and the girl who wrote my first application put

PTSD and Ash Burger's Syndrome. I never knew that till I got a very polite

denial letter. I was horrified! LOL! Can you believe that woman is in charge of

helping veterans apply for disability and she did that? Unbelievable.

So I KNOW this will be stressful (dealing w/a few idiots), not to mention that

women veterans with PTSD caused by anything other than combat duty are being

systematically denied everywhere. That's coming out of the discovery from the

lawsuit by SWAN and the nine raped veterans against Rumsfield and the Pentagon.

The government has qualified immunity so the Plaintiffs can NOT win in the

traditional sense. They're trying to win the RIGHT of rape victims to privacy,

to not be forced to work for their rapists in the military, and to preserve

evidence of serial military rapists, and to get the law to allow them to be

civilly prosecuted for raping women whose miltary status is allowing rapists to

get away with their crimes. I feel partly responsible for NOT doing something

over the last 25 years to help stop what was going on. Many of us feel this way

now and are supporting SWAN and the plaintiffs in this case.

However, all this means I'm once again faced with trying to deal w/the VA ...

who just doesn't get it. So now I have a very personal quest just to survive...

get my VA PTSD/Asperger's disability... and just keep living. Stressful even

thinking about it...

So, basically, that's my story... or the gist of it. Thanks, , for letting

me back on the list. Life with Asperger's, throughout my life, has had more

repurcussions that most could possibly imagine. Having said that, you might get

the idea that I'm a depressive sad kinda gal. But that's not the case. Even in

the darkest storm, I've always got a Pollyanna attitude and see the silver

lining in everything and the unique star qualities in everyone. I've always

focused on that.

But I've never, never, never been good at asking for help for myself. Now I

don't have a choice. So any suggestions from yall now would be most certainly

appreciated. And whoever I talked with before about VA disability, please let me

know who you are. I need to teach my VA office what Asperger's is... and that

AIN'T easy. And I don't have time to recreate the wheel for them anymore.

Sorry this is so long... wasn't my plan... but you know how Asperger's talky

talky I am when I get going...

Robin Carlisle