Whiplash

As I sit here in one of Carson's sweatshirt all cozy, I can't help but feel energized. Exhausting as these type of meetings are, I always find I am either 100% wrung out or I am 100% ready to take on ten bad guys with a really loud Miss Piggy "Hiiiiiigh OFF!" karate chop. (That's what I called it when I was little. I honestly don't know the real term.)

I learned shortly before I left the hospital for my meeting, that Dr. G from Dallas Autism Treatment Center, had called Ruby the Red and told her the admissions committee meets this week and we should have an answer Thursday or Friday. A yes or no answer on whether he meets criteria. A yes or no answer on whether they will come look at him. I am sooooooo nervous I can't even equate it to anything funny.

Today's meeting, well, it was supposed to be more. It was supposed to have a few more people but it ended up being small and my bright purple power blazer I wore was lost, except on the two TWIN Korean Veterans who were sitting at a stop light next to me--flirting.

I can hope you keep up with this hamster wheel of a two hour meeting.

Disclaimer: If this reads in parts like I've been drinking, just know that's how it was presented to me as well. It isn't a typo and I am not responsible for any whiplash that ensues. Just wait for the cherry on top.

My understanding on part of the low numbers at the meeting today was the state agency DDSD in charge of placement, couldn't make it to the meeting all the sudden when they found out I was coming. Am I that scary? Don't answer that.

So DHS Worker was there & her Supervisor (who was with us at court) and their student who is in school and doing a report with Carson's case.

On our conference call side was included Child Welfare (CW)  & Oklahoma Health Care Authority (OKHCA). Some of their people couldn't make it either. These are usually large meetings.

They (CW) first wanted to touch on Son#2 returning home and if that was possible. They talked of getting him evaluated to see just what all he'd need in the home but of course, no one during school hours or to accompany him to school. And no one at night when his sleep is all erratic.

"DDSD won't do 24 hour care."

So this is where I jumped in for the first time in the meeting and went off on a five minute monologue on why Carson cannot live at home & how that's not fun for me, but this isn't about what's best for me, it's about what's best for him. How coming home from Rose Rock I restructured the entire family and it's schedule, walked him five miles a day, found a special needs after school daycare, chain and padlock on my fridge, key entry to all bathrooms--It still wasn't enough. I am at the hospital 115 days now. We have round the clock care and nurses etc. I'm still not enough. I never will be.

I also did my speech on how no one gives birth to a child and thinks at 11 yrs old they will leave home, never to live with you again. Think about sending your kid to college and multiply it by 100--and oh yeah, he can't talk.

 Long pause. 

CW: "That was well articulated." 

Me: (silence)

CW: "What about sending him so far away? Like Texas.

OKHCA: "We don't contract to send kids out of state."

Me: "Well then you might explain that to the ten kids in Texas that just had their funding yanked in June."

OKHCA: "Well if they do go out of state, they don't stay past 18 yrs old."

Me: "Well, I'm pretty sure at least one of those kids is 21 yrs old. And isn't the state federally mandated to provide any special needs child an education until their 22nd birthday?"

OKHCA: "Umm well it's really about the mechanism of payment  for out of state. Maybe if he was in your custody we could do a work around & cover the treatment with our insurance."

(Tricksies-If I take him out of the special needs petition I'm not stupid---you don't have to do jack anymore.)

OKHCA: "There's no new group homes in Oklahoma geared toward autism."

(Much rolling of the eyes by those of us in the room---DUH! We know that!)

"Tahlequah wasn't a high enough level of care."

(YA THINK!? I said that way before he got there! Tahlequah said that WAY before he got there!)

CW: "Unfortunately DDSD can't pick him up to place him anywhere because it's an adult program."

(Is that why there's an 8 yr waiting period for their services?)

"All they would have is an "agency companion home". In therapeutic foster care..."

At this point DHS Super interupts and says, "We have checked with foster care and put out feelers asking for specific home type & care givers---Foster Care is unable to staff him. It will not happen. There is no foster care home. His needs are too great."

DHS Worker: "Plus if a home environment worked, he would be with his mother!"

CW: "Well then why is the hospital environment working?"

Me: "I think that's due to 24 hr staffing and everyone there getting breaks in shifts, he trusts these people and realizes they mean him no harm & his sensory overload is contained for the most part--which it is not in a true home environment.

CW: " Won't he grow out of some stuff?"

(I'm sorry what's that? Grow out of autism?)

Me: "In the RIGHT environment that is suited to kids like Carson that are more severe 1-2% of the autism population, and a place that has dealt with kids like Carson--he might LEARN to adapt his communication techniques or modify certain behaviors. Maybe even potty train. But I don't see that being done in Oklahoma. What I see in Oklahoma are places that can barely meet his daily hygiene needs and sometimes not even that."

Then the biggest Lightbulb Whammy of all...

OKHCA: "The crux of this is that the state of OK is on a list of only a few states in the entire country that does not have autism legislation on the books for insurance. There is no criteria for severe autism in our mental health legislation for insurance. It isn't covered. 

We don't want to put him somewhere that in 364 days he will be yanked out & everyone will be upset because funding has run out in whatever mental health category we are billing under."

So the few that have the power---OKHCA & Child Welfare--are seeing this as a big, huge picture in their policy textbooks from their desk. And I see it as we have to walk before we can run. 

 You'd think that'd be the end right? Noooooo! But wait! There's more!

CW: "What about Rose Rock? Will Rose Rock take him back?"

We all just about jumped out of our seats! 

DHS Super:" Umm no they absolutely will not take Carson back."

CW: "Why not?"

( I snorted. For real. Out loud.)

DHS Super: "There was an investigation after he left. It wasn't good. And Judge would say NO."

CW: "Oh."

(I reported them for abuse & neglect 3 times the last three months he was there. I don't think they want me or Carson anywhere near them. The feeling is mutual.)

OKHCA: "What we will probably do is severeness and then when he outgrows that, we can move him to another facility that is for less severe kids or adults back here."

See this is why Dallas is good at what it does, it doesn't move those kids every 6 months to somewhere different. 25 years of taking kids and keeping them till they care to leave or are retirement age. That's what these kids/adults need most--STABILITY! 

DHS Worker: "New Mexico is already agreed to take Carson & agreed to contract with us. But there is a 4-6 wk waiting list."

OKHCA: "Okay but when he is 18 yrs old he will have to return to OK and apply for adult disability."

Me: "What?! That's starting over in the line for all his benefits! With the special needs petition he was bumped to the top of the DDSD services list---but now he'll start over at 18 yrs old?"

OKHCA: "Well there was a kid once we sent to New Mexico and after he turned 18yrs old they applied for him to be a resident of NM and he stayed at the facility."

(SO SEE?! That CAN be done in Texas too! You've set a precedent you dum-dums!!!)

Do you have whiplash yet??!?!?! 

So--we ended with 

CW: "Well, I guess I don't have any answers."

Me: "I have yet to meet a person who's had ANY answers.

So, we will all be patient and wait to hear what DATC says Thurs/Fri. and go from there. Check on some school funding access for DATC or other facilities.

Nothing is settled but I do see the narrow boxes these people are working from. If I could get them to spend 30 mins at the hospital--I know I could get them out of their little pea brained way of thinking.

They think if someone isn't meeting policy criteria from a manual, they will keep running into the wall trying to make them fit rather than make a new door to go through.

I feel sorry for them really. So many people working with Carson have been touched by his journey, these people are sheep waiting to fall off the cliff. But if I've brought around DHS and that group---I know I can shepherd a few more into the Carson fold.

Oh the cherry on top I promised....

After our phone call ended, DHS Super & DHS Worker told me the Judge told them that if we find a place--she will help push funding. Ummm yes please!

They also told me the investigation into Tahlequah is done & turned in.

Apparently there were lots of  concerns or findings. "Results were an extensive list, like over ten issues." 

There was no hospital record in Tahlequah of him being brought there to the ER three times as told to me/DHS.

The nurse for the group home said, "Why wouldn't they have called me about his arm?"

And apparently Tahequah had led DHS/Super to believe Carson was not alone in the ambulance. Otherwise, DHS Super assured me, one of them would have come to the hospital themselves.

(DHS is officially off my poop list)

Oh and the real cherry...I guess word is getting around about Carson...some legislators at the state capital pushed for this meeting today & "they know Carson's name".

( I wish you could see my poop eating grin right now. It's HUGE.)

So I am planning a trip back to the capital real soon.  I'm ready to show them some gross pictures, twist some arms, get some money, and rewrite some legislation! 

CARSON'S LAW!!!!!!!!!!!