Tuesday, February 02, 2016

Handicap Or To Handicap: We All Have One (Or Two Or Three)

(This is a lesson I taught in my home congregation ladies class at the beginning of the year, so it is written as such. I had people ask me to post it in written form.)

The definition of a handicap is:
a) a circumstance that makes progress or success difficult
b) to act as an impediment to 

These are very different--one works at keeping you from things, and the other, YOU, are the thing impeding someone or something else.

I will say now, I do not have all the answers to every question I'll ask, rhetorical or otherwise. But I think that's healthy for us. And humbling.
God doesn't bestow all knowledge on us because our human egos would be quick to succumb to bloat.

With most physical or mental impairments people ask, "why?"
As I mentioned previously speaking on Doubt---questioning is okay.
In my opinion, it's a healthy part of our God given free will. And even God's son took time to pray to his Father to ask for clarification in the garden before he went to the cross.

As a realist, my mind doesn't hover over the why. I don't care. Maybe that's shocking, but I don't.
I have absolutely no problem caring with you over your "why"; but I don't really care about my "why".
 For me what matters is what I'm supposed to do with it. I'm a pleaser, a doer and I want to just jump to the part where we find solutions or accommodating resources.

Examples were given throughout the Bible on handicaps. Anywhere from the skin conditions of Naaman, Jonathan's lame legged son, Moses--did the most humble man have speech issues or was he an introvert?  The handicap of who you're matched up against, like David. And I don't want to forget my spiritual mentor, Job, who has too many impediments to name.
Then all the way to the New Testament where Paul speaks in 2 Corinthians 12:7 of his "thorn".

2Cor 12:7--" or because of these surpassingly great revelations. Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me."

Of course none of us know what his thorn was specifically but there's quite a bit of evidence pointing to Paul's thorn being lingering blindness or eye issues after his road to Damascus encounter. 
In Galatians 4:15 where he says he knows the Galatians would have torn out their own eyes and given them to him. 
Galatians 6: 11 Paul talks of writing in his own handwriting to them, but with large letters and writing.
Paul pleads with God three separate times  to remove this thorn, but God instead used His power & grace through Paul's weakness.
(I personally think Paul struggled with other "thorns" like maybe nightmares & guilt over the persecution he participated in. Humans do struggle with guilt & letting go of our sins and the sins of others that have touched our lives.) 

I think we're lucky at this congregation to get to see such huge God moments or displays of power, and control and His ability to overcome anything.
We are lucky to be constantly shown through Gavin, Gage, Coleman and Carson.
But through each of these children's unique lives, we are able to really see God's power at work in some impossible circumstances.

Remember I said Job was one of my spiritual mentors. He looses his money, livelihood, even his children and was afflicted with boils from Satan.
Satan claimed that good people like Job love God only because of the good things He provides.
Remove these and his faith would melt away.
Chapter one tells us Job has done nothing to deserve this.
Sooner or later we find ourselves in Job's type situations where our world seems to crumble, and nothing makes sense--our faith is put on trial.
For me, I see him as the example of anyone going through suffering, to hold steadfast to your faith.

James 1:1-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything."

Another interesting, human part of Job's story is when God gets upset with Job's friends as they try to talk him through the things handicapping his life. 
Lesson #1 in NOT being like Job's friends:
Do you know what I personally want to do when I feel frustrated and feel like I got shoved down to the bottom rung of the ladder of life??
I want to throw a good, old-fashioned hissy fit at how hard it will be.
I want to lie in the floor kicking and screaming and say not nice words.
You don't know what it feels like to live my life, so don't think you know how I should feel about this development! Maybe instead, you should ask the person,"How do you feel about this newest information?"

For example--a friend's child gets into Harvard.
Terrific! What fantastic news! It surely is. Their child is smart. Their child did something impressive. Here's what we as friends say, "You have to be SO happy to hear that!"
Umm no I don't.
I can be exasperated, sad and frustrated or want to lie down in the floor and throw a ring-tail hissy. Trust me, there will be a few other emotions for a mother to process before she gets to elation.

 Give her time. She's thinking, "My child is going far away from me, won't come home but a few times a year & this will change our dynamic, our relationship and our lives forever."
 Is it the worst news--no. As a mother does this bring forth a plethora of emotions on many different levels-- yes. Have you had this exact human experience?  So let them process it all in however long it takes them.
Please don't be like that child that sticks their hand under the door while you're in the bathroom, asking if you're done yet, fifty times.
Encourage when they reach out. Everyone needs that--but you can usually sense the tone of someone's emotions. If you aren't one of those people who can--watch the people you know can. I'm dead serious. Just like Job's "handicapping" friends, you could be right or wrong, but that's not what we always wanna hear even when we know it's the truth.

This brings up the other handicap definition--"Are you acting as a handicap..."
--in a situation with someone dealing with physical or mental hurdles in their life.
--in a situation where we feel we know best---for example, raising kids.
---in a situation where someone has wronged us and we're using that to keep us from continuing to work for the greater good
If you are--then you are allowing a seed Satan has sown, to handicap you from furthering God's kingdom.  

Handicaps come with sacrifices.
*Where's the justice?
*How did this happen or how did I get here?
*I thought God wouldn't give me more than I can handle?
*Who did this to me--God or Satan?
*This isn't fair!!
*Why do bad things happen to good people?

Remember I told you I don't claim to have answers. All I can tell you is what I believe--which is--
What matters is we are given these trials & then we show God we trust Him to know more than us by staying steadfast in our faith.
We show the world we trust Him to navigate us through life.
Even in seasons of disappointments and trials, God is there with us. Even if He's silent like he was with Job. Yes silent.
Our imperfections are a reminder we need to rely on God and each other.
We need to try and be open to helping those who we see sacrificing for their handicaps. It may not be easy or in the way we want to assist, but we aren't called to "easy helping" just because we're Christians.

Hebrews 12:7-12
"Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father?  If you are not disciplined—and everyone undergoes discipline—then you are not legitimate, not true sons and daughters at all.  Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of spirits and live! They disciplined us for a little while as they thought best; but God disciplines us for our good, in order that we may share in his holiness.  No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.
Therefore, strengthen your feeble arms and weak knees."

Tuesday, January 26, 2016


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!!!!!!!!!!!

Thursday, January 21, 2016

Club Med

Yesterday was a bad day. It was not pretty and I was one of those Target bags blowing around in a parking lot waiting for someone to pick me up and shove me in the recycle bin.
Today is already much better and my hair is still piled on top of my head in a wet bun so don't cry for me Argentina. It's all good.
But I'm giving you these not so flattering details to let you know it ain't all unicorns and rainbows with moms of chronic ANYTHING kids. 
There's a few moms I am privileged to have in my life. They are moms with kids with chronic medical issues. There are four of us. While you may say I do not fit in this category, I will define my role. I have a kid who's disability is so severe that he could allow harm to come to himself or me, one day, and not realize the consequences. There is a definite fatality rate involved with my autism.
Carson also has issues I know these other mother's struggle with--side effects of meds. The very meds that are supposed to help your child, can cause side effects that come with their own bag of tricks and hazards. That would be the reason we do the EKG's. He takes harsh meds,that have over time caused  issues and will continue to stress his heart. He has banged his head so much, his doctor has worried about frontal brain issues. Worry is worry and stress is stress---we all share that in common about our children. My newest hurdle of being in the hospital has probably cemented my spot in Club Med. 

Now there are four of us here at Club Med. We have another child who is non-verbal with varying serious health issues, and two that have had many major organ surgeries and are the bravest of the brave. 
While we do not talk on a daily basis, we are not each others BFF's, we share a lot of the same feelings. We can rant and rave at each other, encourage each other or just simply like each other's Facebook posts and we know. 
We know that we know, we know. 
Club Med isn't about who has it worse at the moment, who is actually getting time with their other kids or really about THE kid---it's about feelings. Not many people can give the validation of , "I know how you feel", and really know. But we know. No one may ever know what it feels like to walk in your shoes, but these women have tried mine on and walked around the block. That is something I thank God for. Ours is a very different club or friendship. We don't keep in constant touch. It's just the knowing that makes you sometimes feel better. It's those prayers you say for one another that you know they say right back for you and your child.  I pray on those bad days we have, that I have enough bail money if the call comes one of us has snapped. I love these women in Club Med. I pray good things for them and long lived health for our children. We can laugh till we cry, we can cry till we laugh. And we can probably tell more poop stories than a 12 yr old boy.
I've been in a funk since my Dallas trip. Usually I'm a pretty private person with my feelings but I think there might be some small pearls of wisdom in sharing them this time. If nothing else than to explain my dazed look and zombie like state as you see me wondering around town with my ten second delay to answer your questions.

Let me try to explain. **I will preface this analogy with the fact that I do not ride any rides at amusement parks. I am not a roller coaster person, I do not like heights and I do not glean joy from going in circles.**
 Imagine getting off a merry-go-round after 100+days of being on that spinning wheel (of death) and then trying to jump back on. Your equilibrium is off, you stagger around, you want to vomit and you feel like your sense of timing is WAY off. 
That's how I've felt since returning from Texas. I can't make myself have the same energy to go back to the hospital and work tirelessly making phone calls etc for Carson.  Take it easy, relax you say--
That would be nice, why don't I do that?
I can't seem to knit one complete row, read more than one page in a book or concentrate on anything more than 4 minutes long. I have no idea what I'm saying when I speak, I zone out after 4 minutes of someone else talking and I want to do anything fun and distracting to get my mind away from the guilt I feel for not being with one of my kids every minute or doing something for them. 
I want to wander aimlessly in a store (which I haven't really done in all these months) but that's tremendous sensory overload--I would go postal and end up wearing a tu-tu home I didn't pay for. I feel like I was captured by some alien and probed in the melon and sent back to earth to wander around and spout gibberish. (Maybe I'll run for President.)

Club Med moms know this feeling well. I don't even have to ask--they'd just laugh.
But for me it was new. Bonus prize to the hospital stint I imagine.
Just as I was thinking --thank you Jesus this day is over--God sent me a cement block.
I'd really been shaken to the core the past few days when someone close to me told me they didn't think God was down here working in Carson's life or anyone else. Just an opinion. I don't want to argue it or think about it one more minute.
But God's cement block landed in my lap last night with a thud in the form of a text from a friend I don't hardly ever hear from.
I feel it's only fair to share her words since you have all put in the prayer time for Carson & myself:
"I teach at a college in NE Oklahoma. We had a dept meeting last week with the president of the college. It was mostly about the decrease in funding for OK schools, but during the meeting he was mentioning how he was upset with the state of the current OK gov. He specifically mentioned the poor treatment of mental health care patients and the abuse of children in the system. I thought you might want to know that all your hard work fighting the system is working to get the word out, even in other areas of the state.
I didn't say anything in the meeting, but I smiled! My Wed night ladies prayer class has been praying, particularly for the Dallas trip. I shared your blog post with the class. I loved seeing how God had been leading you up to that moment for a long time!
He definitely works! Just imagine that if one thing went different in any of your lives (lawyer, lady in Dallas, you), then you would not have had that connection or that meeting for that matter! God plans things WAY in advance and orchestrates each and every one into this beautiful chorus of interacting lives!"

Tuesday, January 19, 2016

People's Court

Court today went about as well as I could have hoped. Especially since I went into today with the energy of dying fruit fly. We were third on the docket which was a nice surprise and I knew I could at least eat my first meal before 5pm.

The Child Welfare Lady seemed to lead most of the discussion and started off letting the Judge know that OKHCA is finally on board with out of state placement.

The Judge says Hospital Lawyer came pushing at her for a discharge date & wanting to know the plan for where Carson will be going.(See the hospital only gets a stipend, not an actual dollar amount by the day.) This put the judge in a tiny, ever so small tizzy to push OKHCA & company, to move things along a little faster.

The Judge talked about maybe the doctors at the hospital can call out of state hospitals and see about cutting through red tape that way to speed things up.

Seems Albuquerque, NM has said yes but needs to work out funding. DHS Worker expressed displeasure for me, over them being the same company who owns Rose Rock. In fact, when I filed neglect and abuse charges in April/May/June against Rose Rock, they ended up firing their director. An interim director & assistant director were brought in from Sequal Youth Services (owners of RR) of  New Mexico, to work in OKC. So these ladies remember Carson and are on board with him coming to NM. The judge asked what we all knew of this place--no one knew anything. Except it's quite a ways away--ahem.
(Also--3 yrs ago when working with Wrap Around Tulsa---New Mexico was first on the list--he was going for sure--and then, nope. This is the same place.)

We discussed waiting to hear back from a place in Houston. So that makes 3 viable options.
And DHS Worker listed in her court report all the places she had contacted--Massachusetts, New York, Florida, Georgia, Kansas, Missouri, Arkansas, etc. I hope her crown gets extra jewels for all her work she's done for Carson. She's the only one I trust of them all.

DHS Worker brought up my foot in the door at Dallas Autism Treatment Center and that I had just gotten back from going there myself. Judge looked a little impressed and nodded at me. We exchanged head tilts.
Judge asked if I was successful. I voiced the Executive Director of the Board's displeasure at the treatment of OK towards it's own children. I told her this was the very reason I wanted THEM to have my son. I let the Judge know we now have two feet in the door and are waiting to hear from DATC about Carson's admission packet. (It's a lot like applying to college.) The packet was emailed Friday---with the holiday yesterday--we'll see.
The Judge was pleased I think. We all know and agree DATC is the best place for Carson---it's a matter of IF.

The Judge discussed if Carson did go to Texas, would DHS intervention/shared custody still be needed. It was decided probably not, that his funding would still be through state dollars/waivers. Slippery slope that. Before cancelling out what we started I would need to ensure it was all still to remain the same. That the state can't all of the sudden send him back home or drop funding of his care etc. These are slippery state weasels I do not trust at all. I will agree to nothing anytime soon.
The main perk would be to stop paying child support payments. There are others, but before I undo all that work I went through to get to this stage with all this court mandated "help"--I will weigh my pros & cons. I mean in less than 3 yrs he's an adult so...I don't know. That's something for another day when it matters more and I have more brain cells than a fruit fly.

And then of course, DDSD and OKHCA and DHS want a formal meeting downtown, very soon to discuss Carson returning home. That's right, you heard me. I mean that saves them the most money---they wanna give it one last shot. Lay it all out like their selling me a time-share.
I had been told of this from DHS Worker, and while I wasn't excited, I did give her my word I'd go to this sit down.
DHS Worker let the judge know about this meeting---Judge says "What?!"
She almost rolled her eyes....almost. I said nothing.
Then she scoffed. "Fine. But all the doctors from the hospital have said he needs one on one care. HOW could someone do this in their home 24 hrs a day?!"

How indeed. For 18 years I have. And I finally cried uncle 3 years ago. How indeed.

The Judge also said it would be great if the hospital would build a place for kids like Carson. They are so good at hiring wonderful people, they obviously have good doctors. It would fill a huge gap in the state that we are missing for lower functioning mentally challenged kids while keeping our dollars in state. I agreed whole-heartedly!!!!
We ended on this note agreeing to meet back in April and I walked out to talk with OK Lawyer, DHS Worker, and Child Welfare Lady.

We discussed the trip to Texas. They asked how I got a meeting since all they got were no's.
I explained about TX Lawyer and the people he knew. I let them know about Exec Direc Lady and how we all went to the same University.
I'm happy to say they were all impressed. As well they should be.
I explained that if Carson passes the admissions committee, they will send a team. They were clamoring all over themselves with which doctors to have there and if they could come. We'll see. Invitation only.
I told DHS Worker and Child Welfare Lady I was now looking forward to that meeting to talk about sending Carson home----set it up. I'm ready. My filter is wearing thin and I could use a session where I get to speak freely and loudly. I told them I didn't understand how these people were SO SLOW.

Then, OK Lawyer speaks up and says his friend is  Hospital Lawyer who came to the judge. He had called my OK Lawyer as he does when he's overrun with cases. Asked if my lawyer wanted to help.
My lawyer laughed and said not on this one--I'm opposing. So they had a meeting with both of them & the Judge and Hospital Lawyer assured them he didn't want to put a kid out on the streets--how would that look for the hospital?
But he had been asked to light a fire to start things moving a little faster.
So...small, tiny, little, confession....
that was kind of me.
I asked Ruby the Red to ask the hospital to get their lawyers involved to push things along. (Can you picture my dimpled grin, when he told me this?)
I am learning what I like to call, "networking manipulation" from the best here in the state--she says, batting her eyelashes.
 Use it on my kid and I'll turn it right back on you, ya jack wagons.
While I am ready for this to be all over--I am wondering if my next stage of life will include a career of Child Advocacy specializing in "Networking Manipulation".

I told my OK Lawyer I loved the idea of this wonderful hospital building a Carson type place on their grounds.
We all loved that idea-- they have the funds and would get it done fast. I told him I'd be happy to petition the board of St Francis when the time comes. Who better to beg for such a facility for the kids coming after Carson, than the mom who has been here more than 100 days???

Wednesday, January 13, 2016

It's A Small World After All

19 years since we've seen each other.
My red dress---power color right?---and his baby blue tie. Texas Lawyer drove us to
the meeting with Executive Director  Lady.

We pull in and park and I say, " I want to puke." And  he said, "Please don't. I'm a sympathy puker."
So we nixed that idea and went inside.

Texas Lawyer sees her & recognizes her right away. He says hi, she says please give me a few minutes you're early and so we sign in. I have no idea what she would look like--but she is older  than I pictured and wearing a yellow knit scarf, skinny jeans classy leopard print  glasses & a ponytail. 

Right away I love her. So sassy. I adore sassy--it runs in my family.

Texas Lawyer starts--I interrupt. I want to assure her I agree with her feelings of disgust on what Oklahoma has done to those children at her facility, stranding them. I think she warms a little.

Texas Lawyer starts to talk again, telling her how we met in college--she interrupts--we aren't more than five minutes in--"Harding?" she says.

Texas Lawyer and I exchange a brief look---Bison get this a lot.  The pat, rote answer--"Small Christian University in Searcy a small town in the middle of Arkansas."

And Executive Director Lady says, "Oh I know where it is, I went there and so did my father."

That's when I knew. All this lead up. All these doors opened by God to get us just to this small, tiny, meeting. Texas Lawyer talking to his law partner, his law partner knowing a board member (or two)
and that wonderful guy getting us the introduction to Executive Director Lady. That's all God, cause it sure ain't me!

 You don't have to agree with me. You don't have to see it the same way. Shoot, you don't even have to believe in God---but take it from me as a lifelong believer--I can tell you-- THAT IS NOT LUCK!

Do you KNOW how many people were praying today? I have no clue---but I can promise you it was well over a hundred according to Facebook & texts. And the Word of God says--whenever two or more are gathered in my name, there am I.

And there He was.

Texas Lawyer and I felt it. (He had to---I sort of Elaine from Seinfeld, punched his arm all the way out to the car afterwards yelling "Get out!" "That's crazy she went to Harding too!" "No way!")

And I know Executive Director Lady felt it all the way down to her cute little ballet flats.

She warmed to us.

We had straight talk.She knew of the program in Plano that our preacher (from Texas) has recommended  for Son#1. Wow.
 I can't even tell you what all we discussed. It's too much. This lady is AMAZING. She is on boards in New York for advancing the futures of adults with autism, and a committee for a national list of providers. (she wanted to know what places in New York that DHS was looking into for Carson)
I totally want to be her when I grow up.  I told Texas Lawyer if nothing goes any further, the networking resource I've made with  her is totally worth it.

I let Texas Lawyer ask all his fancy money and contractual talk stuff. And every so often I just let her know as a mother, I wasn't giving up. I assured her I knew the fight didn't stop, SHOULD he get into her facility. I will have to fight his entire life. And I was quick to admit I knew not everything would be perfect if  we get to Texas.  I was frank about knowing how much all this will take to make every tumbler fall into place for this situation to be unlocked. But again, that's not me---that's a G thang.

And she was just as frank in her talk of a contract between the two states and what that would have to entail. Texas Lawyer & Executive Director Lady were very into the negotiations for both sides and I was very squirmy. He was SO optimistic is his wording with her--"So when he's here..."
"And so when he gets in here..."

They finally boiled it down. She told us flat out, the hurdles will be:

1. Meeting the admissions committee--and passing.

2. Do they have a spot? (Texas Lawyer asked and she said she did not currently have one right now)

3.  Funding and hammering out a contract that allows Texas not to be left holding the bag or get any kind of shaft in this deal.

Now---all that sounds like serious, massive, crazy hurdles. I will admit to a a small resigned feeling  started creeping in.
But THEN, Executive Director Lady says, "If he passes the admissions committee--I'd send a team to meet him and evaluate him. He's obviously very different on paper. And I'd send Dr. G with that team. And should I see that he is wonderful, and we need this kid, then I would want to probably create a spot for him."
But so far my God has shown me he's a pretty good track star.

Tuesday, January 12, 2016

My Five Smooth Stones

The Executive Director of the board of my dream home for Carson, has agreed to a face to face meeting Wednesday January 13th at 1pm. She has reminded us she is NOT the YES or NO lady. She is the, "I might be persuaded to push this through to the admissions committee who does say YES or NO." (which with her name on it, probably will be a tiny bonus)
After much thought & prayer---I will be going to that meeting with Texas Lawyer.
I'm going to drive down Wednesday and spend a blissful night in a hotel enjoying the time alone after that meeting and come home Thursday.
I haven't had much of that in the last 100 days. Just in the car on the way to and from the hospital.

Friday and Saturday I spent the days and nights pretty scared. Should I go to the meeting or not?
I had talked myself into a corner. Be careful what you pray for---you just might get it!!
What if I went to Texas and I said all the wrong things?
What if I didn't go and I should have gone?
What if Executive Director of the Board says no? It will go no further.
What would I do if it ends here?
Do I have it in me to keep going if this is a no?
All this time I wanted an answer---who will I be with that answer being a no? Am I still able to fight?

But I reached out to some friends & spiritual touchstones for me. I laid it out for them and for God. All the insecurity, all the fear, all the doubt.
And those friends were quick to step in with reminding me no matter how much I mess up with my words, if I go or don't go, and no matter how much I want Carson's forever home to be the DATC----God has a plan. God is bigger than any mistakes I could make. And whether I am there or not, God will open whatever door he needs to.

David chose five stones, not out of doubt in God, but to be prepared. David knew the power wasn't in his sling, but in the Lord. Scripture says God works all things out for good, for those that love him--who have been called according to his purpose. BUT---you gotta stick it out through the problem phase. All of it. You can't quit. And God's plan isn't always going to be your plan in the end. Sometimes you take five stones and He only needs one.

I have to remind myself not to let the giants in Carson/my life, get bigger than God.
I need to give my will to God.
The Holy Spirit is The Strengthener.
Why would God send us the Holy Spirit if not to do more than just "get by"?
So like young David who had to be scared to face Goliath---I will select my five smooth stones and I will take them to the giant state of Texas with me.

Thursday, January 07, 2016

Open Doors & Softened Hearts

 I felt pretty discouraged with not a lot of places to turn todayI. Trying to work on Son #2's locations but they were starting to look more like Houston, TX or the NE part of the country. As in, New York.
I started the day off with talking to Ruby the Red the social worker of OZ. Not a lot of encouraging new news, but I still needed to call the DHS worker back. After lunch I finally had time to call her and she confirmed she was looking more towards New York. I told her I really didn't see if the judge wasn't excited about Texas, and keeping tabs on Carson, how excited would she be about some place even further away? Not to mention, I'm pretty sure a NY price tag is a little heftier than a TX one. How would broke butt Oklahoma possibly say yes to New York?!

She said she'd keep me in the loop and we hung  up. I knew she could hear the disappointment in my voice. I have made peace with Carson living apart from me for the rest of his life. What I have NOT made peace with, nor will I, is never seeing him on a regular basis. I 'm all about what benefits Carson the most. And me or his family not seeing him, does not. He gets upset after I leave the hospital for Pete's sake!
Yes the three best states for autism facilities are Oregon, Texas & New York---but I'm thinking I still have family in OK. I need access to everyone.

So I contacted a friend that had sent me a PitBull Lawyer's name---calling her tomorrow. Just confirming she works for the publicity and out of the goodness of her heart and not for real things like money.
Then I reached out to my Texas Lawyer. (He is going to be my attorney when I'm a real author and writing books, living in Texas with Carson.)
I went to college with this guy and he always made me smile--and today he didn't let me down!
It had been awhile since I reached out, but I messaged him a couple of quick questions about Texas residency. He was good with answers and we discussed how quickly someone can move to Texas and become a resident, and if that would allow Carson's case to be moved from OK state insurance to TX state insurance.

Then he calls me--I wanted to kiss this guy!!! He says he was swamped with work at his firm, back in October when I was asking him about the Dallas Autism Treatment Center. Apparently he had asked his partner back in October if he knew anyone in the DATC. He said nope.
Fast forward to today, my TX Lawyer asks him again.( His partner is the type of guy who grew up around the Dallas area and seems to always know someone.)
Today his partner looks up the website. Looks at the board of directors. Yep---seems Partner went to school with a board member. And THAT Dallas Autism Treatment Center board member has a son who is IN the DATC. Partner calls the board member.
(Now remember, I said DATC keeps saying no because their board doesn't want anymore OK $$)
Board Member guy says, "You guys need to call Mrs. Executive Director of the Board.  She is the one who holds the cards & where the buck stops. Tell her I recommended you call."

Texas Lawyer is going to call Mrs. Executive Director of the Board tomorrow at 11am central standard time!!! I can only hope and pray that her heart is softened by Carson's story. That her heart is pricked by what the state of Oklahoma has done to him, that she will allow him to come there for his forever home.
Now---how can this be, you ask, if she wants no OK funding?
Ruby the Red and I have a small theory that Dr G that runs the DATC, is taking what happened (with the yanking of the funding in June) personally---as if these were her children. She is asking the board not to accept any other kids from OK. And this I cannot fault her for---THIS is the very same reason I want him there!!!!! Don't you see? If she will fight for her kids that hard to protect them---she's the one for my CarCar!!
 So maybe Dr G is a little biased and maybe God can use my Texas Lawyer to soften her heart!!

Texas Lawyer also thinks if we maybe offer up the idea of a trust fund, it may appeal to them with the funding issue. Say for example Exec Dir of the Board lady says it's $250,000 for Carson to go to the Dallas Autism Treatment Center for 2 yrs. He suggested we ask the state of OK to put that into a trust for Carson so there is no way anyone else can access it or retract it.
That would give me 2 yrs to work on turning him into a Texas resident. Then the money for his future there would be TX money.

The two ways I could go about this is, when we go to court Jan 19, asking the judge to make that happen. Or (sort of my dream Rambo Mom moment) of me going back to the state capital with what is hopefully my Pit-bull OK Lawyer, to say---"Make this funding happen for him or I walk from here straight to a news camera with disgusting pictures that I will not hesitate to turn over to a child advocacy group, or a civil rights lawyer and sue your stupid butts and get the money THAT way." Don't make me choose, because I have been ITCHING for a real knock down drag out fight with someone for a long while!!!  I have anger stored up the likes you have never seen!!!

So--I called Ruby the Red back and we discussed what questions we want to send TX Lawyer in with tomorrow. I am texting him that list right after I send this.
I have my prayer warriors all over this---as well as nurses--doctors & friends/family.
I cannot contain the hopeful excitement I feel---it's been so long I almost didn't recognize it.
My prayers requests are as follows:
1. Pray this woman WANTS to let Carson into the DATC.
2. Pray TX Lawyer asks/says the right things. And that I sent him with the right questions/words.
3. Pray Exec Dir of the Board CAN let Carson into DATC.
4. Pray for funding to be available from whatever corner of the state or world she wants it to magically appear from. (such a tangled web of agencies & waiver money)
5. Pray hard Christians, that THIS is the door God wants to open and the heart He wants to soften.