Diary of A Not So Wimpy Kid

Today is the end of Day 66 at the hospital. I realize I haven't updated much since somewhere in the 30's probably so I'll try to catch you up. It will probably be slightly out of order and I apologize if I go all "Random Rogue" on you. My brain is having trouble focusing on more than one thing at a time lately. Anyone who tells you stress doesn't affect you physically has never had a crap ton of stress in their life yet.

Day 52 our Wound Dude got new short arm splints that cover both of Carson's forearm areas. They are by the same company that made our banana peel splint so these have the Houdini straps as well. This allows the doctors to feel better about Carson's elbow/joint mobility and range of motion.
We have had a few minor set backs on the arms, where he has gone after the area that is exposed on the wrist & thumbs. They're sadly a little raw now, so that has left him with socks covering his hands. I call him my lobster boy, but it's not slowing him down eating at all. Splint Guy who has helped fit Carson for all these splints, had suggested there are chewy things for sensory kids with oral fixations. He likened them to Kong dog toys, and I looked them up and he is right--Kong for Kids! We'll probably order some, but for now we're sticking with socks.
Carson likes the pressure of his arms being in the splints, even when he has episodes where he tries to bite, he will then stick his hand/arm out for your to re-cover him and then he's fine.
 It will be good he can keep all of these splints so if he has bouts of these biting episodes, his arms can be safely kept out of reach.

His arm wounds are healing nicely and quite fast with the silver in his special bandages. I'd show you pictures but anyone new to Carson's situation that comes in (even on his medical team) think it looks bad. But all the doctors/nurses/techs/sitters all laugh because we know just how great it really looks compared to day one. Wound Dude calls it "beautiful" and refers to him/his arms in his classes he teaches in rotations.

Carson has been happy for the most part, but has had a couple weeks of some ups and down moments where he wasn't quite himself.  He was pacing in small circles, wasn't smiling, was OCD about his toys and very grabby and demanding. He scratched one of his favorite nurses, one of his favorite girlfriend sitters and scratched/bit me. He is so remorseful afterwards and would sit and cry in his bed. Which if you've ever seen him cry---It. Is. Pitiful. (he's made a couple nurses and techs cry with his waterworks) Oh and he also started having a small tic show up where he was jerking his head to the side. (which has since subsided)
It's utterly frustrating to know he can't help tell us what is going on. I could attribute part of this to the full moon that was happening at the time (don't laugh until you've taught school through a full moon), I thought some of it was pain so I asked for a dentist. Psych wants to explore dropping some more meds since some of his meds can either cause tics OR prevent them. Yep. Makes a ton of sense huh?
I suggested we wait until he was more himself and we could get a baseline to judge any new behaviors from. They're pushing a little, which I get.  It is a contained environment and they do feel he still on too many meds. Sigh. Decisions, decisions.

Carson's DHS worker came to bring me his stuff from Tahlequah. It filled up the entire back of my van. He now has a second weighted blanket and vest. Hooray! And I'm still going through all his clothes to see what he has for winter. The nurses really want to get him down to the playground soon since he hasn't been outside in SO long. But will he come back inside is the question.

Carson and I also have a new ally---Ruby the Red. Well, she doesn't have red hair but she's fiery and I like it. Ruby is 100% team CarCar and is ready to help, say or do anything she can to help get him to Texas. This is technically her job as a hospital social worker but I'm pretty sure she sees what's best for him isn't in the state of Oklahoma. And I'm pretty sure she likes us.
She has been making all my phone calls to Texas, DHS, DDSD, OKHCA etc.
She even called the state principal of special education, to look at using educational dollars to move Carson to Texas. Ruby said when she talked to the DDSD supervisor he said, "Oh yes--there's lots of buzz about this at the state level." What is it they say--- If they ain't talkin' about ya, you ain't doin' something right!!

As far as Texas goes---my forever home choice for Carson---the Dallas Autism Treatment Center, has one slot open. Please Jesus. But because of the shenanigans in June by the state of Oklahoma, their board of directors isn't wanting to take any money from Oklahoma Health Care Authority--OKHCA. Which is essentially our state insurance for the disabled, which would pay for Carson to be placed in Texas.
My answer to this was almost defeat. It was a rough, lonely day in my head that day. Then I prayed and slept on it and came back the next morning with---"Well then where WILL they take money from???"  My God loves to overcome. But He REALLY likes to overcome when there is just a tiny .5% chance of something happening. He likes to throw his power and weight around sometimes and remind people who's still in control. I am hoping this is one of those times.
Still waiting to hear back on that. Although, they are trying to be helpful with other resources in their state for Carson.

So Ruby called Texas Neuro in Austin, Texas. Wonderful institution I have heard such good things about. And very similar to Children's hospital where we are now. It would be a great next step for Carson from here. To get paperwork started to apply at Texas Neuro, Ruby asked a psychologist here in Tulsa, who specializes in autism to come see Carson and give him a cognitive (which lets us know around what age level Carson is functioning on mentally) and a psychological evaluation/IQ exam. (Which these kiddos are entitled to every 3 yrs)  The doctor was supposed to come Friday but rescheduled at the last minute for Sunday.
Not only was he exactly who Carson needed, he is a new ally. He has two autistic kiddos of his own.
Dr. Jacob feels that if he'd had access to Carson years ago, he might not be as severe as he is now.
He agrees a normal diagnosis and IQ reading of someone with his levels of autism is 40. But Carson's thinking and deductive reasoning skills exceed a 40 IQ. He has intellect but he's non-verbal. He's not severely MR, he has poor neurological processing delays. Essentially it means he may see the item you're holding up to coax him with. But the image and idea of that item may ping pong around in his head like a pinball machine before he processes it.
That could take minutes or hours. The extra stimuli in the room may prohibit as fast as a result too.

Dr. Jacob is familiar with Texas Neuro and thinks Carson would do well there. He says they'd do a cool brain scan to see how his meds affect his brain. How fast they take affect, how deeply they penetrate, how quickly they dissipate, what part of the brain they're reaching, etc.

Dr. Jacob says the biting of his arms is an anxiety/OCD response, which is probably why we're seeing these episodes after a major change like going from a cast to the banana peel splint or to the forearm splints.
He also suggested Carson would do well on Marinol/THC, which is a synthetic marijuana. Apparently it's being used a lot now in the Northeast (Maine/NY)where they are seeing pretty amazing results with autistic kids that are severe like Carson. I love a doctor who is up on what works for the 1-2% of the autism population.
Now do I think the state of Oklahoma will be hip to giving my kid a pot brownie a day for medicinal purposes--probably not. But do I love what we could do for a help, rather than handicap with something God created and put on this earth---yeah, I think I do.
After a few hours with this guy, I am honestly Team Jacob. He is cool and really gets Carson and he got to see the happy, the mellow, the quiet, the talkative and the disassociation spells which are Carson. Carson even got right up next to Dr. Jacob's face & sideburn and sniffed him while looking him in the eye. Usually this freaks people out when Carson stares into your eyes. Dr Jacob didn't even flinch. I and the sitter however, were giggling like mad as any dignified adult mother would do in such situations.
Carson was totally sniffing him like a dog, trying to smell fear. Or his shampoo. It was definitely one of those two. He was refreshingly clean smelling...

Anyway, I think he can handle Team Carson. He even asked me, "I think I can be frank with you, what do you want me to say in his report?" I am definitely Team Jacob! His report will be done around Thursday (he had told Ruby Friday but she said, "Really? You can't do Thursday?" Gotta love me some Ruby!) and after that Ruby will submit her paperwork to Texas Neuro. It's not a done deal that Texas Neuro would take him, so let's pray on that. Please. The hospital says he'll be ready for discharge around the beginning of the year.

 Carson had a dentist that came and did an evaluation last Thursday. I was worried this may be a source of pain for him since he's been grinding his teeth and because he hasn't seen a dentist since he left my care. She got to look in his mouth and although he'd had a shot of haldol, I was amazed he let her! This boy is so trusting of his hospital people!!! Dr. Jacob says that's because he senses they are here to help. The nurses told me she was great with him and even allowed him to eat M&M's while she examined him. How many dentists will do THAT?
She didn't feel she'd need an oral surgeon when she goes in. The dental surgery was supposed to take place early Monday morning but she had to reschedule for this coming Friday morning.
In the meantime, knowing he will be under general anesthesia, I am assembling my own NASCAR pit crew. Make hay while the sun shines people!!!!!
While he's under she'll do x-rays/cleaning/any fillings that need to be done, and I want lab/blood work, hopefully freeze the wort off his foot, the EKG the doctors have been asking for for weeks, and bring in Wound Dude to clean his arms really well too.


Oh on top of all this, he's been constipated. You can tell he walks around on tip toes and legs crossed. He is holding it in on purpose. Dr. Jacob says that is remembrance from past pain associated with going to the bathroom/enemas so he doesn't want to let it go. (toddlers will do this too) Dr. Jacob also says if he goes to Texas Neuro, they will have dealt with this before and potty train him. I have heard this before from facilities so excuse me if I don't get my hopes up, but--that WOULD be awesome.
Poo isn't the most fun topic to write about so I will spare you those details. But today he had an x-ray while asleep in his bed---have I mentioned how impressed with these people I am???-- and his colon is hugely impacted. He's even started trying to gag himself during meals. The tank is full. So Friday, some pit crew member will have the honor of doing 2-3 enemas while he's under. For some reason my nurses all find this hilariously funny. They've informed me most surgical nurses they know don't like any dirty work having to do with patient clean up after OR. (Pun intended)

So hopefully by Friday I will have thought of as many things as can be fixed while Carson is under as possible. Get him all sorted out while he's not aware to be stressed.
If you're praying for Carson, I have a list since so many of you do ask me for specifics. Thank you for caring so much to ask & for praying on our behalf.

* Pray Friday goes well and everything gets taken care of that needs to, to benefit Carson. That his pit crew takes as good care of him as his nurses/doctors here do.

*Pray he's back to his happy self. He's starting to get there but we need Friday I think for him to turn the corner.

*Pray that the Dallas Autism Treatment Center finds some OK cash it will accept to give Carson that slot OR that he gets moved there eventually for his forever home. However & whenever God sees fit.

*Pray Texas Neuro let's Carson in. I am starting to see this is a TERRIFIC stepping stone from here for Carson.

*Pray for my body and mind to hold on just a little longer. Stressful time of year, trying to figure out how I can work it all out for the holidays.

----I will soon be having y'all help me keep your eyes peeled for some stuff for Carson. He has had a loss recently of one of his pigs and he had a couple of days of searching. Absolutely pitiful to watch him toss pillows and look under the mattress. Pretty sure it got taken out with bedding even though the nurses and I checked all dirty linens and went down to laundry. Beanie Pig from week one give to him by the hospital chaplain is gone. So I'll post on Facebook soon if anyone has a few spare minutes in this totally un-busy time of year to help me find some special things for Carson.

Captain's Log Stardate Day 22

 Captain's Log, Star-Date Day 22:

Today had it's ups and downs, the same as every day this week. The boy child in sickbay has been gnawing on his healed arm today. There seems to be an issue with his meds. After all, he went two weeks with his hurt arm in a cast and not once did he touch this other arm until yesterday. Today his hand was swollen to what the nurse has deemed "Puffy Monster Hand". After an investigation, we (Tyler the RN and I ) have determined it to be a compression issue. We feel we resolved this issue with Tyler's manly scissors just cut all the compression sleeves off. We put on a new Posey sleeve with thumb hole and a velcro IV cover on Puffy Monster Hand.
Still the boy child feels compelled to scrape his teeth on it. So difficult to watch him go from happy to manic and do nothing.  I told Tyler I'm convinced it's some med that is missing that keeps him from doing OCD/manic behaviors. He is not exhibiting these behaviors in the mornings. Being the Captain and not being able to make things better is not a good feeling.

Also today, the Lord has made his presence known to me. I always feel him near but today he used others to show himself.  I needed this encouragement, and show of strength to gird  up my loins for the fight I know is coming ahead of me. 

Today's first patient sitter for the boychild was an older lady with a gravely voice. Her name was Willie. Same as a lot of the times, after a bit of time in the room with us, questions are asked.
She wanted to see pictures. Willie gasped. I told her about my year of trying to get Oklahoma to be willing to send him to Texas. And now that they are, but Texas is rightly upset with Oklahoma and not interested in playing ball.
I told her my tentative plan to threaten to sue them so they'll somehow make Texas work to shut me up. Turns out Willie's best friend was in an abusive relationship and couldn't get back into her home once she left, to get her work clothes. Willie's apparently spunky because when she called police and they said they couldn't help, she called Senator Tom Coburn's office and demanded help.
Willie ended up with a police escort down the highway to her friends house to get her clothes within 3 hours. Oh and the checkbook.
Also, Willie's mom is 91 years old and in a nursing home. She fell and hurt her knee. A few days later when Willie checked on her she could tell it was bad and took her to the ER.
Her mother's knee cap was broken and is permanently damaged. Willie demanded the nurse tech be fired who had called to tell her about the fall but never reported it to the RN.
The facility fired him but Willie went further to the Governor and made sure his license was revoked. Spunky.
Willie said I needed to take this to the press and to the state capital and get the governor involved. I'm thinking this is sounding good. This could be why God set all this up last year in early December when I went to the capital.

Patient Companion number two was Allen. Just like my dad's name. And his last name was my grandfather's name. I think I can remember that.
He stared a lot. I talk to the boy child almost non-stop as I feed, clothe and change him. I'm sure to some people it's odd. But if it was me, I wouldn't want to be ignored and I cannot know if the sitters speak to him after I leave.
After I feed the boy child some lasagna I brought from home, I am telling him about the wonderful lady from church who made it. Telling him about her, and how I've known her my whole life.
How kind she was to make us food and bring it so I can be with him all day every day.
Allen asks what church I go to. Turns out he goes to Park Plaza in Tulsa. Small world.
The lord allowed me tonight to leave the boy child in the hands of fellow brother in Christ so I could go home and make a Halloween costume and feel he was in good hands.

"Exhibit A Your Honor"

Back at the hospital I'll give you a Perry Mason version.

Court was so empty today and it's usually all Jerry Springer-ish, so that should have been my first clue something was up.

Apparently they weren't even starting until 2:30pm--we were scheduled for 1:30. We were 30th on the docket and they were starting at number 18. 

Our lawyer says he has an emergency hearing in Claremore and has to leave. I'm sorry, WHAT?!

So he handed us over to a lady in a pink shirt who I already saw trying to "help" another family in a not so inspiring way. Luckily, our lawyer told her to "just unleash her" & let me do the talking. 

The DHS worker came in--said the meeting yesterday (that I chose not to attend--I felt it would be doing their jobs for them--again. And also allow them to think I was okay with how things transpired--which I am most certainly not.

She said out of state was not even brought up.

And they asked---wait for it--IF HE COULD JUST GO HOME NOW.

Umm no. They are really stumped. Someone may actually have to leave an office and DO THEIR JOB.

We ran into Carson's attorney. I had emailed him with my attorney with a full & complete update on Sunday evening. Complete with a couple of pictures. 

I think those made it to the Mon meeting I skipped. 

I told him we were 30th on the docket and perhaps he could throw his weight around to get us bumped up--then I flashed a big smile--I've been told that helps.

And I guess it does--we went first. Dimples for the win!

The judge started off saying, "We thought Rose Rock was bad..."

I asked if she'd like to see my pictures she said no quite emphatically.  I had made copies and sorted them but no ziplocks at court so all attorneys and DHS worker got theirs in handy dandy Bio Hazard baggies from the hospital. 

At first I was truly worried she didn't want to see them--but she said the lawyers had forwarded on my email & pictures.

I was perfectly content knowing I had gotten my main concerns across in that email.

We discussed hus meds and adjustments--she was very interested in that aspect.

The judge mentioned the ambulance and Carson being alone and it was dead silent. Then she huffed, "ABSURD!"

More silence. She was not in a mood to be trifled with today. 

I quietly shook my head and said, "Same." (Well I didn't really but in my head I did.)

We discussed the EXCELLENT care he was recieving at St Francis Childrens and how as horrible as this was, it may benefit Carson in untold ways.

She went on to ask if OCC was involved--it wasn't--it is now. She wanted to "make it OCC wide". 

Carson's attorney asked if we could note the judge's disapproval--she didn't answer.

The judge worried outloud that out of state care would be harder to monitor his care/health.

I let that sit & then assured her I had enough family and friends that that would not be an issue.

I told her programs & opportunities I was looking at for my senior in high school, that would keep me interested in Texas for more than occasional visits.

She asked if the meeting yesterday addressed out of state--no. "Of course not" she said with disgust.

Judge turns to Carson's attorney and says, "I'll allow my disapproval noted on placement."

I'll have to have my lawyer friends verse us in how much weight that carries, but she said it with authority and pencils moved rapidly.

She wondered what places are available in Texas. I left that to sit and quietly but then pointedly started listing them & where I had been. 

She said, " I hate to put you to work, but you can look into that for me." 

I assured her it was my job as his mom  and my pleasure. 

She set a court date for January and  we adjourned. 

Done & doner. Pink shirt never said a word but thank you & was practically running to keep up with me as we left the courtroom. We got out in the hall

and she said, "He was right--you did great!"

Thanks Pink Shirt. 

Just The Facts M'am

It's been a long 6 days. So if I'm repeating myself--skip down.
The facts:
Carson was transported by ambulance an hour away, to the St. Francis Children's
hospital Saturday night. He was in only a t-shirt and no socks or shoes.
AND HE WAS BY HIMSELF.
He woke up at the hospital terrified, restrained to a bed.
The staff was only told by the ambulance that he had been dropped off at a group
home 2 months ago. That was all they knew.
The staff didn't know ANYTHING about him. If he could speak, swallow or what he
was there for.
They inspected him from head to toe finding bruises, sores and of course his arm
which was a place the size of small remote control to a TV. It was one third black, dead skin.
He woke up to find about 6-8 people/security in his room and popped his restraints
from the bed.
They got him in the tub but he was scared of everyone and sat in the corner crying &
screaming. Which happened to also be on the stopper so they couldn't drain the tub so it flooded the entire bathroom & up to their knees in the room.
The hospital staff got a Posey bed for him in under 30 mins after fighting him for so
long.
They held him down, got an IV in for antibiotics & severe dehydration--he blew a vein
in the first one---second one had to have 2 velcro covers and someone to hold his arm
still while he had the 1 hr treatment every 6 hrs. (Monday he ripped that out & his wounds started to re hydrate which was not fun---but his proteins were low and he was pretty dehydrated so he is eating some & drinking which is good.)
I was out of state and didn't know he was alone until late Sat evening. I arrived Sun
morning before he ever woke up. Apparently, staff thinks he's a different kid now.

More facts:
God is very good. This is a horrible situation but it's being handled by THE best people
in the world.
Carson arrived at shift change when extra staff were there. As scary as that probably
was to him to be surrounded by strangers, alone, it was a blessing.
Carson & I have a few favorites now. And Carson is DEFINITELY the favorite on his
floor.
He has had a "Patient Companion" since he arrived who sits in the room & is never
allowed to leave without some other staff  there.
God has blessed Carson & I with an array of amazing sitters/companions who have
heard Carson's story and prayed for us, been touched by him and have asked to come
back to be with us.

The Child Life Specialist told her mom about Carson and she mailed him mardi gras
beads--he IS topless most of the time. The therapists and staff have all brought Carson
toys, treats and always come in asking if they can bring something special in for him.
And no offense to your friends, but mine are pretty dang special. They have taken care
of me quite well. A scarf to keep warm--some tea to keep my hydrated--all kinds of treats & snacks for Carson--Aquaphor for his severely chapped/dehydrated lips--
stuffed animals for him--bringing me food to try  and eat, stuff from home and just
loving on the two of us. I don't know that I'd be sane on day 6 without all that.
The MANY doctors and specialists I've been working with while up there are amazing
& care sooooo much for my son. They are going above & beyond. They are very
protective now of Carson. Once I was there, they saw the situation for what it was
and have been protective of me too. I'll take it!!!

They are angry like I am---they want him in Texas like I do--and they are fine with
keeping him here as long as need be.
DHS & Tahlequah kept texting me and calling. I refused to answer. I did not have time
for that. I have literally barely sat down.
And my momma taught me if you don't have anything nice to say, you shouldn't say
anything at all. And so far all I can think of are four letters words. So I have chosen to
remain silent.
They know where he is. They can come.
NO ONE came until Mon when his therapist from Tahlequah came and tried to warn
me about Carson as I was leaning in the bed trying to give him meds.
"M'am, step back! He is dangerous, don't get so close! I wouldn't do that!"
I just looked at him. The other 6 people in the room knew who I was. If I'd had the
energy to laugh, I would have.

But he later brought good info to the table with some stuff for Carson to try---saying
the biting even though started by another kid, has now become a sensory thing for Carson and that we have to figure THAT out to keep this from being repeated.
In turn, I showed him gross pictures of the arm and told him he could tell Tahlequah
Carson came in with lice. I felt this was a fair trade off. He called everyone from the
parking lot and Tues morning Carson's DHS worker showed up to see him.
I made her look at the pictures. (Wound dr has never seen anything so bad on a kid)
I told her I was pretty sure I could sue if I wanted to. That you wouldn't send a verbal
15 yr old who tried to commit suicide in an ambulance by themselves and say "Tell
them your medical history when you get there & what's going on." Umm no.

THEN, Wed morning, a social services investigator came to interview me. An official "on
the record" recording while  I sent her all the pictures I had from Sunday & she took
some new ones as well. She was outraged and said the only way he'd go back was
with one on one care. But I'm pretty sure OK has exhausted all it's resources.
I don't know how this isn't proving they have nothing here for him here.
As much as I feel like Tahlequah said ahead of time they didn't think it'd work & I did
as well---this is UNACCEPTABLE. I had been there 2 weeks before---how did this
happen so quickly unless you didn't bathe or touch him for those 2 weeks?!
As sad his condition is, I can't imagine this not helping his case for moving out of state.
I'm pretty sure being in the hospital for more than a week is expensive.
If I sue you---pretty sure THAT is expensive. You should have just moved him when I
asked nicely.

The wound specialist really has had to bring in other people and be creative with
healing Carson's arm.
We are NOT doing surgery now, the dead skin is off. I will spare you the Zombie like
details of how that happened. The skin underneath is pink and has good blood flow.
The doctors want to stress him as little as possible. They came in Wed and made a cast
of his arm, (while he was semi-sedated) and then cut it off and sent it across the west
coast to make a mold of it. It will be a silicone sleeve that will fit over this large Mepilex
dressing/band aid which has silver in it to speed healing. Then some Houdini straps. I 
have discussed several options with the doctors---maybe an elbow stabilizer on the
OTHER arm to keep him from removing all the bandages etc.
Still needs to be changed once a week.

Yesterday OT came in and put a patch on and then a special compression bandage
that is designed to sort of help autistic kids.  (lessons in autism 201 coming soon)
He has been keeping his arm wrapped in a shirt, towel or blanket.
The drs and I are finding he LIKES the compression. He left it all on for 3 hrs yesterday
and so I'm hoping that's a good sign of things to come.
He loves his Posey bed. Google it. Again--that's explained in autism 201.
He loves Nutter Butters--we've had quite a few incidents where he has escaped the
bed and grabbed a big bag only to fend me off  in a corner while he ate the entire
thing.

I've gone home bloody a few times. That made for interesting walks to the parking lot
late night. I've only left 3 times, but that has to change soon because the other two
are crying for me (mostly Jack) and we go to court Tuesday.
I'm the only one who has fed him a meal yet.
I just missed giving him his meds for the first time last night---and let me tell you he is
on A LOT of meds.  The head of psych is personally on a mission to fix that for him.
She said there are only so many landing strips in the brain---his have multiple stacked
planes waiting for take off doing him no good at all. People have thrown new meds at
the problem only to create a traffic jam for his brain.
I'm sure I'm missing some stuff but that's those are the main things going on.

I have to go email my lawyer but if you have specific prayers---pray he allows ALL his
injuries all over to heal. (He has pressure ulcer/wounds too)
Ask that he keeps feeling safe where he is & I keep meeting great doctors that care and are continued to be intrigued by Carson.
Pray for court. Pray something new happens for him.
I don't know how much longer I can do the hospital routine of being there all day till dark, but I want to.
I have my vitamins, blood pressure pills and unsweet tea. I'm surviving. We won't talk about how messy my house is, but I can do survival mode, I've been there before. I know how to do this.
Just call me Rambo.

Messy Hair, Messy Life

                                         50 days since I have seen my favorite 15 year old.

In those 50 days Tahlequah has stopped some meds, and started others. Some I don't agree with at all--like the drug they give alcoholics so if they drink they'll vomit. He has sent FIVE of their staff to the hospital. Yes five. Carson has been to the ER three times.He's been banned from the psychiatrist's office. Tahlequah has put up two staff in hotels for extended periods of time to bring in extra staffing. That's a lot for them and for him in 50 days.
So today, this is how I found my baby.

Barefoot, outside, swinging like he loves. But he was so sad.
He hadn't had a shower. He had messy, greasy hair & his shirt was inside out.
This is how he greeted me.

He is my "we". We are so tired. We are so tired of fighting everyone. We are so tired of being in survival mode. And we are so very tired of the stress of not being able to fix this.

Change is hard even under the best of circumstances.  I explained to Son#1 like this:
It has taken you (Jack) almost 30 days since starting school to be okay with your schedule, new teachers/aides, new classroom, new bus driver & route.
Carson has been in Tahlequah 50 days. After being at RoseRock almost 1,095 days/3yrs.
This is a new place, new people, new routine, new rules, new schedule and new room.
I hate that it's taking Car-Car this long to settle down, but I don't think we can say that's ridiculous.

When you can't tell someone you have a headache, there's a smell you don't like, that your elbow hurts--don't touch you there, that you're scared or you don't want to eat fish sticks--you want Whataburger---there's gonna be frustration at your lack of control.  And it's going to manifest itself in a variety of ways. A lot of them not-so-pretty ways.

Just when I think as a mom that there can't possibly be many more of these Mt.Olympus sized hurdles left, there are.
This one is waiting for him to find his rhythm and settle into the newness of it all. With my hands tied. Waiting. Without a true direction to turn towards other than my faith. Waiting for when I hear the direction I need to be moving.

I've lost my sense of direction in this fight. Just trying to survive day-to-day and not think about my lack of control. I am quite aware and have been for some time that I have no real control & I'm usually fine with that. It's why I can seem so removed.
However, right now, my lack of participation is wearing on me. I'm a do-er. I don't sit and I don't dawdle. With school starting and the slew of other normal people issues, I am floating in my boat and I can't hear much over the loud waves. I'm slowly regaining my focus. It's taken a lot. Six days without leaving the house. Letting myself not answer the phone or texts when I just don't have the energy to deal with anyone elses stuff other than my own. To just concentrate on taking care of the brothers.  And me. I have benched myself. Trying to rest The Julie. Trying to take care of me a little more, so that I can come back & fight another day.  It's what Carson and I both need---rest.

Aunt Grandma Betty

I'm going to start with the obvious--our family has some extremely strong women in it--if you know us, that's probably not a surprise. Today I get to tell you about one of the special ones, who I feel blessed to say, contributed to who I am today.

It just so happened, lucky enough for me, God placed me in the same family as Betty Casey Stafford. My beginning with this family began in her house & I have felt at home every visit since. Whether it was sitting around the table for holidays or scattered around the fireplace to visit with all my cousins.

She made me my first doll--Raggedy Ann--which prompted me to request a Raggedy Andy. And I got it. Mine was the first Christmas stocking she knit to start the tradition for the grandkids. She came to see me sing in college at Spring Sing. And she helped me recover my couch & chair when I got married.

I have fond memories of all of us sitting on the board in the haircut chair with our heads in the shampoo bowl and her smiling/laughing down at us. And every time any of us slept over, we knew she was going to let us have a bowl of ice cream at the end of the night before bed.

Aunt Betty never missed sending me a birthday card, and even mailed me a card when I was baptised where she wrote about how proud she was of me.
I got to work at her shops in the summer when I would come to stay.

That's probably my favorite time I spent with her. Just the two of us. We'd ALWAYS start our day with a bowl of Honeynut Cheerios, head to the shop and at lunch, we ALWAYS had a Dr. Pepper & she ALWAYS had her Bible. She'd take it out & read to herself while we ate our lunch.

It takes a strong woman with an even stronger faith to push through life when there are heart aches like loosing parents & children. Aunt Betty had that fortitude. She was able to do the hard things, like telling me what she thought God expected from me and what was right & wrong. And I don't think she would had done all of that if she didn't love me. She could say one word, "Well..."  And you knew she expected you to do the right thing.
That's love. It's more than just the "I love yous".

It's amazing to me how often a heart can break & how many pieces it's composed of.
My Aunt Betty was a Casey AND a Stafford. Those are two families that have generations of loving, family oriented, strong minded women. That gave her an extra large heart, for her extra large family. I know without a doubt she was extremely proud of every single one of us that were lucky enough to be part of that circle.

Doubt

 James 1:5-8
 "If any of you lacks wisdom, he should ask God, who gives generously to all without
finding fault, and it will be given to him.
 But when he asks, he must believe and not doubt, because he who doubts is like a
wave of the sea, blown and tossed by the wind.
 (Doesn't doubt feel like that??? You get seasick!)
 That man should not think he will receive anything from the Lord;
 he is a double-minded man, unstable in all he does. "
To me Doubt is a rebellious boy child that sometimes gets out of hand--it's opposite and
perfect little sister, is faith.
There are points in our life when our faith is strong, and we believe without a doubt.
Everything is going peachy. No need to doubt or worry--all is well!
But then we also have times where doubt creeps in, and we cry out to the Lord to
“help our unbelief"--like the New Testament father who's child was possessed by the evil spirit.
 Don't we find the doubt creeps in when we feel overwhelmed, and have begun to
assume WE will be the solution to all our own problems? When is God going to fix this?
When will this be over?

We get too busy worrying ( the cousin to Doubt) that we forget where we put our faith.
 The good news is that God answers prayers, and He is waiting to reward our faith. In
fact, He commands us to "not doubt, but believe," because He knows how much more
abundant our lives will be when we are full of faith.
God created us with free will. With the purpose being that we choose to serve him
not because He commanded us to, but because we wanted to.
As a Christian you choose each & every new day, to believe in God and that Jesus is
His Son.
And you choose every day, how much of your life you will GIVE to them, as they ask.
That is choosing to doubt whether or not God can handle your "stuff" or if you think
you've got it all under control.

A friend once taught me a very important lesson. She said sometimes we have to allow
others to help us, not for ourselves, but so they can serve God.  My pride & I have tried
to remember that. Sometimes it's not about us.
The apostle Paul’s prayer and desire for Christians everywhere was that their lives
would be full of prayer and worship, so that there is no room for wrath or doubting.
Both of those are opposite to God’s will for his children. His heart for us is that we
would be faith-filled worshippers that are passionate for our God and King, because
He knows that we will then have the capacity to live abundant, joyous, and purposeful
lives.

I want to share something that has given & continues to give me great comfort. It may
be nothing new in thought to you, but I have taken great strength from it myself.
Sometimes it doesn't feel right to admit we doubt. Seems a wrong or difficult thing for
Christians to admit to. I mean, we're perfect coming up out of the water after baptism
right? We'll never doubt again!
Jesus was human. We know we are to use him as example of human emotions he too
has felt just like us! Jesus was sorrowful to the point of death in the Garden after the
Last Supper. Think about that.
This perfect human explains to his closest friends, as much as he can of what he's
going to be going through, and he prays for them and with them. He is exhausted and
goes for a moment alone with His father. He is feeling overwhelming sadness and
anguish. And in his talk with his Father, he doubts God's plan for Him.
He does! He says if there's any way, let this cup pass from me.
He did not want to go through with God's plan. Is there any other way? Are you sure
Father?  We don't have a plan B on the books?? Please?

But He knew there wasn't. Yet he asked anyway. It's okay to ask God if there's another
way. It is okay. As long as we go to our Father & fellow brothers and  sisters in Christ
and restructure our faith.
God our Father gave us free will---and wants us daily to choose with that free will, to
take up our own cross daily---and follow Him. To cast our doubts aside.
Sometimes we need a day or two to cope with our doubt. That's perfectly fine. Just
don't unpack and live there.
We as Christians need to feel comfortable enough to express our doubts to one
another. Allow and let other Christians  help us build our faith back up.  And hopefully
make us turn to God.  We can help ourselves by staying in the Word so we can hear
the Holy Spirit when it's guiding us. And reach out to keep reaffirming. There's nothing
wrong with doubt that faith in God can't fix.

1 Peter 5:7-9
"Cast all your anxiety on him because he cares for you.
 Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion
looking for someone to devour.  Resist him, standing firm in the faith, because you
know that your brothers throughout the world are undergoing the same kind of
sufferings."

Updating of the Update-DAY 6

The Greenhorn DHS worker called and apparently DHS/Child Welfare and DDSD had another conference call with the head of People Inc. Without all the in-between people BUT with a mediator/liaison. Perhaps a new ally.  I am going to have his information by the end of the day today.

They have assured me that Tahlequah have agreed to give son#2 a little while longer to adjust. And will keep him for a bit longer to see if these new meds will even out his behavior so he can exist there peacefully. The Marine & Mrs. Garrett will shift out more often than usual to try and alleviate the uprising of mutiny.

I was happily surprised to learn that DHS/DDSD & Child Welfare were all on the same page as I was, that the previous teleconference call was very one sided. Mutiny was heard, our side was not.
We discussed Tahlequah's "hands-off" approach to the kids. I said  I loved this since we were coming from such a handsy place like RR. However, having been in this position myself, you will have to use your hands to defend yourself & to protect Carson from himself, IF you want the episode to end with you still standing. And what's more, you'll feel less hope if you don't defend yourself. It's a very physical game, and a very mental game at the same time.

If things come to a head & he has to be admitted to in-patient, Greenhorn has assured me it will be a 30 day situation for meds to stabilize WITH the understanding to all parties involved, that Carson returns to Tahlequah afterwards.
We discussed some other possible band-aids for Carson to help him feel more comfort, and she gave my contact info to the Tahlequah employees to contact me day or night. Since they have not answered my correspondence I think they're probably not happy Carson isn't gone. And may be pouting.
As I would tell any of my kids, "You're only hurting yourself by not cooperating with me."

From here, Carson & I are on borrowed time. I have a million phone calls to make today and try to circle the wagons and find a plan B.
B is for Boot. There happen to be a lot of boots in Texas.
What is it Bruce Willis says at the end of the "Die Hard" movie?
Yippee ki yay...and all that jazz.

Mutiny on the Bounty

I just got off an hour long teleconference call again. DHS, DDSD, Child Welfare, Tahlequah & some other agencies were represented. I got a text with a number & code to dial in with. I asked what this was---DHS worker said it was a call about Carson if  I  wanted in.

I said when--she said now. I called.

I had son#3 with me and was in the middle of a ton of stuff at the church building.

Took the call and tried to just listen.

 I knew the Tahlequah workers were upset yesterday with Carson's outbursts and behavior over the weekend. They had taken him to the ER and started new meds at 5pm last night after he was attacking staff, peers & himself.  DHS/DDSD  tried their best to explain with his severity of autism, this was a huge change up for him & we needed to be patient. Let the meds kick in.

The staff all took turns speaking. The Marine spoke first---he went OFF. Crying uncle, saying he was beat up, scratched and was scared because he felt Carson had "nothing behind his eyes". That he'd been to war before, was 6 ft, 200 lbs and scared.

Mrs. Garrett the house mother, crying saying she was scared to come to work for the first time ever and she couldn't go on. That she came there as a kid and knew how scared a kid could be, but this was too much.

They said Rose Rock probably lied, that Carson had been acting this way all along and they didn't tell them. (no he hadn't--we took him on outings--he wasn't this way in the car ride over there)

They said they probably sedated him & didn't put it on record/file.

Another staff guy got on, saying no one had provided them any info on Carson or coping skills to help them.

So I couldn't be quiet anymore.

I said something along the lines of:

"I spent an hour and a half on the last conference call about transitioning, giving you every detail and pertinent info I could think of concerning Carson. And I understand what you're feeling physically and mentally. I lived it for a lot of years without someone to tap out with every 8 hrs in shifts. I took my beatings and I can tell you Carson's endurance/strength is exactly WHY there were 10 state troopers and 2 motorcycle cops needed on the side of the road when we had that incident. Because they all needed to tap out. I can assure you there is PLENTY behind Carson's eyes. They aren't dead, and I would ask you to remember he is still a child. My child. He is panicked and scared.

I also think I said from the beginning I didn't think this arrangement would work. Staffing wise or the house arrangement. And I do think this is an adjustment period and could work more smoothly for him once he settles into a routine.

I am very sympathetic with what you're experiencing and more so for what my son is experiencing. And I promise you, if I had any other "coping skills" to pass on to you about containing him, HE WOULD NOT BE LIVING WHERE HE IS RIGHT NOW--HE'D BE WITH ME."

There was probably 15 seconds of silence.

Child Welfare went on to ask Tahlequah what time frame could they give them to figure something else out for a living arrangement for Carson.

By the end of the conversation, Tahlequah workers all threaten to quit--and Child Welfare/DHS said they'd have to figure something out ASAP.

After the call, the Greenhorn DHS worker called me, I let her know I knew of a child who had followed the exact same road Carson had---Special Needs Petition---Rose Rock--Tahlequah/People Inc.---after he sent three of their workers to the hospital, the state of OK moved him to Texas Nuero in Austin.

Besides TX Neuro, I gave her the Dallas/San Antonio info.

I'm inclined to think the idiot that keeps saying NO to out of state treatment, needs to come to court next time and say it to my FACE. Look me in the eye you little twerp and look at my pictures of his treatment here, and then tell me no again punk.

So tomorrow, I am preparing to be ready to go to the capital, Channel 2 Works For You or the newspaper.

My child will NOT be strapped to a bed indefinitely in some in-patient hospital facility while you toy with his placement and yank him around again. 

That's where we stand. Thank you for caring what happens to a child most of you haven't met or have only a handful of encounters with. Thank you for not seeing him as a monster.

Prayers for Carson, his staff, (the director at Tahlequah left the state for family vacation the day after Carson arrived) and for me and anyone I might encounter. I am at a serious breaking point mentally. Whether it's me that breaks or I break someone else, I'm not sure just yet. And if anyone has a tropical island I could run off to when this is all over and just read in the sun on the beach---I'll pay you in hand knitted items.

With Shade & Without Incendent

I've been up 14 hrs so bear with me if I ramble. I can feel myself loosing brain cells by the minute.

I took pictures of all his belongings I was taking to him. I kept thinking it must be like this when someone goes to jail. You keep a record of what they go in with.
I remember changing my earrings so I wasn't wearing dangly ones in case there was a fight & they got ripped out. Whether with Carson or HHT, I was prepared.
I was remembering the last transfer Carson did was in a police car in handcuffs the whole two hours.

I left at 6am with the Greenhorn DHS worker who had never done a transfer. And I'll be honest I was totally cynical and thinking, "Bring your coloring book and crayons chick, and you can sit in the backseat with Carson. I'll share his sippy cup and gummies with you."
And it turned out, she isn't as green as I had thought. A wonderful surprise & God-fearing ally.
 I like her. a 14 hr day together in a car will bond you.

We got to Rose Rock without incident and wouldn't you know it, they weren't ready for us.
Carson was ready--HHT had him packed up, but the very vital paperwork we needed that we could not get into Tahlequah with-- wasn't ready. The doctor hadn't filled it out.
Really hard to write 10 prescriptions I guess. We had to wait for her to get to work.
Of course, HHT passed that buck right to the doctor---I think as a paid, neuro-typical adult, perhaps you could have seen to that small detail in the week you've had to prepare OR maybe just before the close of the business day yesterday. Just a thought.
So we waited. An hour and a half total I think.
See HHT wanted us to come at 11:30am. We said no. Tahlequah said no. HHT says he had group to get through at 10am and couldn't possibly do it before 11:30.
I say, the reason is more likely that they get paid $400 a day for Carson, if he stays past noon. If he leaves before---zero dollah. 

I had this whole thing in my head I wanted to say to HHT. I wanted to go all Julia Sugarbaker of "Designing Women" on him.
Remember the Ray Don episode?????

I wanted to say how as a father of two, I really hoped his children were never put in a vulnerable position as my son was. And how if they were, I would  pray that they had caregivers, with more humanity, compassion and concern than he EVER showed for my son.
I wanted to say it and walk out of the room like Delta Burke. But the opportunity never arose.
However, I do believe what goes around comes around so I can relish in the delight that I will not ever have to deal with his sorry, disappointing soul again.

The crux of the trip was it went as well as could be expected. Carson got to sit in the shade. He had some snacks he loves. He watched his favorite movies and Greenhorn and I got to sing Veggie Tales with him. After his "birthday lunch" at McDonalds and his birthday chocolate chip cookies, he fell asleep the last 20 minutes of the trip. God gave us shade and no major issues with Carson or the vehicle. Prayers answered.

His new place has workers I like already. An ex-Marine who came to me & offered to wash Carson's bags of clothes and give him a shower. And a house mom we'll call Mrs. Garrett.
I wish I could tell you Carson was happy as a clam at his new place, but the reality is, even with his impaired knowledge of some of what is going on---he still understands a lot.
He wailed and weeped for about 45 minutes. Prostrate on his bed. Wailing with big crocodile tears.
I closed the door and sat stroking his back, trying to breathe around the huge lump in my throat. I couldn't cry. This was his turn. I sat rubbing his back, whispering to him every so often.
Even if your environment is filled with people who don't care as much as they should, or people who don't take care of you as they should--they are your normal after 2 years of living with them.
THEY are what you know.
THEY are who you recognize. Change is hard at any age. And to be completely alone in a new place without a soul you recognize or know---that's tough.

There are pros and cons here. The columns are tied for me. Am I happy--I wouldn't choose that word. I am satisfied. He is safe and in trusting hands.
But that doesn't change the cons. They still exist. Today was the first & last day I can be in that house or his room. I felt like this must be what a college mom sort of feels like.
I can call once a week and check in. I can bring things or take him out, but not go into the house or his room. Not snuggle on his bed or hold him when he cries. It's the HEPA laws that protects the other kids. The kids who have no parents to come & visit them.
Life is hard. Change is hard. Carson & I are survivors, but just because it's a better choice, doesn't mean it will come easy. We'll adjust. Just not quickly.

Happy Happy Happy Birthday

Dear Carson---
      HAPPY BIRTHDAY BABY!!!!
Here we are and you're another year older--15 yrs old today son.
I wish I could be there today to take you out & celebrate with you--you know how I love to celebrate on the day and make it special--but I'm busy getting ready for the best present ever tomorrow. We're moving on up Weezy!!!
Mommy got you a better place to live!! I'm picking you up tomorrow and we're headed to greener pastures and much better people to take care of you.

I made you some birthday chocolate chip cookies I'm bringing for you. Your fav!
I'm getting your room ready. Gathering some of your favorite toys, dvds and some of you favorite things. I'm enjoying putting it all together. Your long red scarf of fabric you love to wave around and snap like a towel.
Your Blues Clues talking refrigerator with Mr. Salt & Mrs. Pepper---"Zee Straw-Bear-EZ!"
Talking Yoda with all his catch phrases and your Wiggle microphone that sings all your favorite songs. I hope you take comfort in having these favorite things around you baby.

I'm always honest with you CarCar and end up telling you what's really on my heart on our walks--wanna know a secret today? It's going to be hard for me to let those toys go. Really hard. I don't know, I guess those toys represent you, and I have memories of giving them to you. Memories of you enjoying them here in your home. Here with us. It hurts to let those pieces of you go. What if something happens to them & they break? What if someone steals them? What if they get lost and I can't replace them?
That would hurt me. Sounds silly doesn't it? I'm not even that wrapped up in "things" usually, but those things are special. They're yours and only yours. What if I can't keep them safe for you? Like I couldn't keep you safe.
What if I let something happen to them like I let something happen to you? 

This is the biggest step you've made on our journey in years now. I've been working on things, but this move tomorrow, your jump--this is HUGE for you.  I want to protect you, I want to make this smooth for you. I want you to be happy---it's one of my biggest life goals. I tell you and your brothers all the time to find your happy. Usually when they have a bad attitude going on or you feel something isn't fair. I have to teach you this. Life isn't fair. Ever. And it gives you no bigger struggle than finding a way to be content. I could give you no greater gift or lesson as a mom. Find a way. Make it happen. No one else will do it for you. But you baby, you can't really find your happy by yourself.
Mommy's gonna find your happy. I will make this better however long it takes me.
It's only been a year since I started this quest to find you the penthouse of all facilities for your forever home---but I'm getting there baby. One year and one step closer Weezy. 
We're movin' on up!!!!!

House Dropper--Big Head

If my grandmother was still alive, she would probably be warning me not to get "the big head" right now.
For those of you who's Grandma Bible didn't issue this warning, it means you're on the way to getting an inflated ego. I got a phone call and I can't stop smiling this evening. I feel pretty dang chipper even though I know the glory is all my Lords.

Remember the house that dropped on the Wicked Witch of the East in the movie, "The Wizard of Oz"? And how the munchkins sing that little catchy ditty afterwards?
Well, that's me right now.

I just got a call from a friend who's in the know, and who visited RRock today. She says as of just VERY recently, the woman who is the head of RRock, was let go.  ***A moment of silence.***
Apparently, there have been too many investigations since the beginning of the year and she wasn't really changing much. She was never warm or nice to the kids.
But I would REALLY REALLY like to think in my little mind, that the final push of that house over the edge, was maybe a certain charge issued from the Children's Hospital against her establishment.
Coming from a hospital & police report probably is a little harder to talk your way out of as opposed to promising state agencies you'll make changes. Especially to your boss.

Now Sequel Youth Services, which is national, has brought in a woman who runs their New Mexico location. She is commuting back & forth and is already making positive changes.
Cupcakes for birthdays, not just for the birthday kid but for the entire unit!
Happy change there for some kids who could use it.
With this new interim CEO comes $10,000 in new funding!  With that they plan to hire THREE new certified teachers, turn one small playground into a sensory sand area & put in a gardening plot for the kids!!!!!

God literally knows how much change is needed up there, but I cannot tell you how happy I am even though it won't impact my child. This is just the beginning. I am telling myself that this is positive change & the squeaky wheel got some grease!!!!  Change for the munchkins started after that house dropped, and it's starting for these little munchkins too.

You should pat yourselves on the back because without your prayers, positive thoughts & encouragement--that house would never have dropped & started this $10,000 ball rolling right on down the yellow brick road!!!!!!!!!

Hold to God's Unchanging Hand

 Change is happening.  And like it does more often than not, it's happening swiftly.
I was involved in an hour and a half conference call this afternoon, where about 10-12 of us involved with Carson 's case discussed & planned his discharge from Rose Rock Academy NEXT WEEK. 
And it looks like it's actually going to happen folks.

It will NOT be to Texas, and I've struggled for the few days I've known that. Really struggled.
Before you get all unicorns & rainbows on me about finding the happy in this whole thing---I see it.
Trust me, I see it vividly. I see that my child being safe is of the utmost importance. Yet with this knowledge of Carson moving out of RR, comes with new issues. New doesn't automatically mean better for him. There are still major issues that will be at play. One will be him being left there until he is 18 yrs old & will this transfer make him less likely to be moved out of state before he turns 18.
The number one thing in my head is, this was not my end goal. 
You don't play football to put field goals on the scoreboard. You play football to score touchdowns.
Seven point TD's. And this folks, is a field goal. You're still on the board, but you'd rather be ahead by 7 than 3 points. Know what I mean Vern?

Now, all that said--there is a great relief in him leaving RR. No more HHT!!! That right there makes me do a happy dance, I won't lie.
No more worrying about neglect. And most of all, once he leaves RR, the door is shut. No more going back & forth. They most likely will NEVER take him back. I will sleep easier with that knowledge. And to be frank, I take great pride in knowing this has happened so rapidly BECAUSE I filed my two child abuse claims on the bites on his arms in March & April. And the nail in the coffin was when I took him to the Children's Hospital  a few weeks ago and the social worker took pictures while the doctor filed charges against them. Rose Rock is DONE with me. Probably more than they are with Carson.
And that, I can live with.

I will go down to this group home in Tahlequah this next Tuesday  to set up his new room. Which is very surreal to even contemplate.
Then Thursday the 23rd, I will leave very early and head to OKC with the greenhorn DHS worker. We'll get him packed up, checked out. Next is the scary part---a 3-1/2 hr drive with him to Tahlequah. Then get him checked in, unpacked there. It will be an entirely all day process.
I'm dreading it in ways you can't even fathom. The last time I took a 2 hr trip with Carson, we ended up by the side of highway 36 in OKC where my day ended with 10 State Troopers, 2 OKC motorcycle cops, an ambulance, firetruck, a news crew I screamed at, and my son's feet and hands handcuffed. I really don't care to repeat that.

Change is scary is a lot of ways. Most of me is terrified and can't even fathom this being good change, but it is. All I can figure is, because I'm so competitive, because I've been so focused the past year on one thing, because I'm like a dog with bone for my child--this feels like I've lost. Like I'm settling. Like I didn't come through for him.
I know I did.
I did. Right?
I know this is better.
But God help me, I hate to settle.

"Time is filled with swift transition,
Naught of earth unmoved can stand,
Build your hopes on things eternal,
Hold to God’s unchanging hand. "

There's an old hymn I loved as a child, I thought of today after this conference call. It just popped into my head. I loooooved to hear my dad sing it at church. Sit next to him. He never sang loudly except in the car with our family, but I enjoyed his rumbly bass notes in this song.
I looked that hymn up today wondering why it jumped to mind. It was written by a woman who was turned invalid at the age of four years old being forever bound to a wheelchair and her bed.
 I like that the author had known a different than average life as a child.

"Trust in Him who will not leave you,
Whatsoever years may bring,
If by earthly friends forsaken
Still more closely to Him cling."

She turned to her love of poetry/music and began writing lyrics for songs & hymns. Once the lyrics to the song "Hold to God's Unchanging Hand" were written, Miss Jennie Wilson turned the words over to a songwriter.
So this man wrote the tune to this hymn I love, while sitting under a shade tree on his property, just west of Fort Worth in Palo Pinto County Texas.
 Discovering that, gave me a warmth in my soul. I felt it was God saying,
"Texas, I haven't counted y'all out yet."

"Build your hopes on things eternal,
Hold to God's unchanging hand."

The Lone Ranger & Tonto

( This first part may seem like rehash if you've followed the saga that is Carson's life, but bear with me--there's a tiny twist.)
 The last time we were at court the judge issued a court order for son#2 to see a medical doctor outside of his residential treatment facility. This was because his facility has been lying since March about the treatment of his wounds on his arms from March & April.
After two court orders to provide his medical records as proof he DID in fact see a doctor--not just the psychiatrist on staff--when we went to court last week, the judge had a copy.
Now the court order said Carson's attorney, our attorney, the judge & DHS should all receive Carson's full medical records.
The judge made copies for us all from hers.
By the time I got home that day, the DHS worker called to say she read through his medical records and had NOT in fact seen a doctor outside of Rose Rock.
Now, fast forward to today, where I took a copy of those records with me when I came to take Carson to see a doctor.

After 10 days of me trying to get an appointment with a doctor in OKC for Carson, because no one else had time (You know I have an abundance. Just buckets full.)
DHS finally stepped in & called the doctor and was told we should just take him to urgent care/ER at OU Children's Hospital. I was told this yesterday at 4pm.
So within 12 hrs I had left my house at dark to head to OKC.  DHS had informed HHT **see previous posts for a thorough explanation of what a HHT is or to discover one near you** 
that I would be picking up Carson no later than 8am, and he better be ready to go--he had an appointment off campus I would be taking him to. And our new DHS worker couldn't arrive until 9:30am. The Lone Ranger rides again!!!!!
Amazing how I can do all the "work" stuff for everybody, yet share custody with the state of OK and receive no paycheck.

Ol' Silver and I found our way to the ER at OU Children's which is conveniently 10 mins down the road from Rose Rock, while Tonto ate his cereal happily in the backseat. We check in, right back to a room and I could NOT have asked him to behave any better for me. Which is good since he's 5'7 and weighs 138 now.
I showed anyone who would look old pictures, recent pictures, and obviously the doctor gave him a once over in person all nakey.
She decided to call in the "Abuse Team". I agreed, however the Abuse Team a.k.a. The Justice League, was in a meeting and would be down to see us in 30-45 mins. We wait Kemosabe.

Enter new DHS worker. Good timing to get there when all the fun stuff is about to go down. Why is she here again??
Well, anyway, I like her. She's young. I can mold her. I can teach her. She's a little scared of me.
I like it.
I was friendly but not overly so. Keep the fear intact. I want her a little unsure of what I'll do. Keep her on her toes till I break her in and feel I can trust her.

The Justice League was led by Doctor Brown who I liked IMMENSELY after watching how he talked to Carson--actually the entire staff treated him very well & I only had to tell them things once. We totally got each other and Dr. Brown was not impressed with Rose Rock's "care" of my baby.
DHS worker pipes up, that Rose Rock is currently under an OCA (Office of Client Advocacy) investigation. SCORE!!!!!!!!!!!
They took pictures--Carson also had a green, big, bruise in the middle of his back--and checked him from tip to tail. Even a black hole/puncture mark on his thigh that looks like someone stabbed him with a mechanical pencil. I first found it Memorial day. Still there. Heaven only knows.

Dr. Brown decided on Clindamycian--an oral antibiotic used usually for MRSA/staph infections.
And Bactroban distributed by these super cool giant nicotine looking patches that fit over Carson's arms/wounds. The unusual features about the patches are, they contain SILVER to promote faster healing in burns. And since we have no real definitive proof of how the wounds on his left arm originated, he felt like this would cover all bases. The other cool feature is these patches stay put for a very long time. But should you NEED to pull them off, they will remain sticky to re-apply like say, after a shower. Pretty nifty stuff. Oh and they keep him from being able to pick at his arms.

Dr. Brown & The Justice League are also filing a CH-25 I think he said--don't quote me on that lingo. Which he told me boils down to filing charges of" medical neglect" and "lack of supervision" against the facility caring for Carson. 
SCORE!!!!!!!!!!!!!!!!!!
In an attempt to be fair, I will tell you Rose Rock has been applying Bactroban for the past few weeks--how often, I couldn't say. I'd need his full medical records to know THAT. Ahem.
The doctor sent us home with prescriptions and extra patches. We'll see how RRock keeps up with it. THAT is the kicker to me. HOW on earth do we monitor those little boogers?!
Today, I don't care. Today I spent hours with my favorite 14 year old. And today things were done to help my baby. That's all I care about today. The rest I will fight on another day. Tonight The Lone Ranger & Tonto sleep.

Over The River & Through the Woods

Over the river and through the woods to court we go again...
This time was different. Whether it was because I was so utterly exhausted from all the work & mental energy I had put towards Carson/Texas the past 8 months, OR because I just didn't know what to expect. Either way, it was different.
I did not know at all what to expect going in. And for once I didn't prep one little thing.
I didn't have my usual note cards, agenda or even a mental game plan.
My prep this time was a long, hot shower and some Mega Stuff Oreos.

I met up with the DHS worker as soon as I arrived at the courthouse and told her I was sort of hoping someone would be found in contempt of court & go to jail. She said the people at risk wouldn't be in the courtroom. I volunteered to go on the ride-along to get them and I offered to buy lunch.
She laughed. I was pretty serious but, whatever.
The wait was long but our time before the judge was short.
The judge wasn't pleased it took Rose Rock so long to obey two court orders and hand over Carson's medical records.  The DHS worker, Carson's attorney & I were all surprised that the judge had a copy. None of us had received one. And there we were in black & white on the court order to be provided copies.
So I guess it's Rose Rock's way of doing the bare minimum of what they had to, to not end up in jail. But show control by not providing them to anyone else.
AND---the cherry on top?  The medical records do NOT show that Rose Rock has EVER had a doctor see Carson's arms.
Which means they've been lying all along. To DHS, to us, to the judge.
I'm sure you're as shocked by this as I am.

Now, the judge wants DHS/me to take Carson to see an outside doctor this week.
Our new DHS worker has contacted me already this evening and wants me to make the appointment and pick up/take Carson to the appointment.
So there's where we are folks. More shocking examples of the facility not being held accountable and the good guys not having much recourse. This is life. And I find it to be the sucky side.

New Hoop, Old Monkeys

Here we are a few weeks out from another court date, and new hoops are appearing to jump through.
According to our DHS worker, RoseRock won't provide proof an independent doctor has seen Carson or provide his medical records to her/us. They say she isn't entitled to that information. We have a court order they are failing to comply with---I called our lawyer & left a message hoping he will find someone in contempt & have the judge send them to jail. I have so many words for these people but my mama might be reading this so I'll refrain.
Oh and then, RoseRock is officially kicking son#2 out. The HineyHole Therapist has continued to fabricate Carson's progress to the OKHealthCareAuthority, that he is doing SO well, they want to discharge him ASAP.  In reality, HHT is done with my son and wants him gone. Master Manipulator.

Remember the waiting lists in OK & TX I've spoken about? 10 years in Texas and 8 years long here in OK? Those are for DDSD (Developmental Disability Services Dept). They get your child what he/she needs in-home or otherwise. That would be why we cannot just pick up and move to Texas.
However, when we did the Special Needs Petition with Carson, the state/DHS sees it as a more immediate need for those DDSD services. Therefore they bump him up on the 8 year waiting list.
So--RoseRock discharging Carson---GREAT thing. We need him out of that place for his own safety. BUT--there is nowhere else in the entire state to send him but Tahlequah/group home.
The group home in Tahlequah, only has one opening at the end of this month. Carson could get that spot, however, another child at RoseRock is in the EXACT same position & will be taking that spot.

When RoseRock says get out, and DHS/DDSD says there is nowhere else for this child to go (by the way, usually it's a shelter they kick them too but those are shutting down in OK as well), the STATE OF OKLAHOMA, will have to pony up it's very own dollar bills, to pay RoseRock to keep Carson there.
Now, you may ask--what is the difference on the state funded insurance of OKHealthCare for disabled people paying for Carson to be housed at RoseRock as opposed to the STATE of OK paying for Carson to be housed at RoseRock.
I don't have a clue. Not a one. But I'll tell you this...the STATE of OK approved to pay for RRock/Carson to stay---in less than 48 hours.
Amazing how quickly THAT money was freed up, huh????

I mean, what about all these poor kids in Dallas/San Antonio & God knows where else in the STATE of TX being snatched up and cut off from funding and sent "home"--back to the great state of Okla-sucking-homa????? Texas is terribly disgusted and disillusioned with if ever to trust the STATE of OK again. They can't believe the flippant way the state is treating the continued care of vulnerable kids from their state. Brace yourself, I'm going to yell...

THE ENTIRE REASON THESE KIDS ARE IN TEXAS IS BECAUSE OKLAHOMA HAS NOTHING TO PROVIDE THEM WITH FOR CARE!!!! SO TAKE THEM OUT OF THE ONLY HOME THEY'VE REALLY EVER KNOWN, AND SEND THEM BACK....SEND THEM BACK TO WHAT EXACTLY????? WHAT IS YOUR PLAN HERE OKLAHOMA HEALTH CARE AUTHORITY????????????????
HOPE THEY GET LOST BETWEEN TEXAS AND THE OKLAHOMA STATE LINE???  HOW ON EARTH ARE YOU GOING TO HOUSE/FEED/PAY PEOPLE TO TAKE CARE OF THESE KIDS/YOUNG ADULTS NOW??? YOU THINK YOU'LL SAVE MONEY RENTING HOUSES & STICKING THEM IN THERE??

Don't quote me on this--but a little birdie told me the government has provided OK with money that they have misused---I'm shocked, aren't you? And so either that money was providing for these kids and it's now gone/been yanked away after misuse OR because that money is gone, the state is making up for the deficit in other areas and squeeze these kids money/fund till it squeals.

So, our State Congress has adjourned for a few weeks, and I have some meetings I'm trying to get in the works to where hopefully I'll get to ask for some of that newly budgeted money to go for my child to get care SOMEWHERE ELSE. And if not, I will be at every news station in town, online, talking to any reporter that will listen, I don't care if it's a sports reporter--until someone makes this happen for Carson & guarantees me and THE STATE of TX that his money won't be yanked.

The DHS worker called & let me know yesterday that there will be a meeting here in Tulsa soon with DHS/DDSD/me and told me to be prepared that DDSD will be asking if they brought Carson home & provided a 12 hr shift person to stay with him---would we let him come home.
I find this harder than probably a lot of questions to answer. The answer is no. There are so many things I could go into of why. And I could write on & on about my mommy soul wanting him with me, to take care of him myself---but here isn't good enough for Carson. Not anymore. It's a fact. He isn't happy here. So I'm thinking on my response wording for the meeting.

So here we are, new hoop, same old monkeys. If your thing is to send out good, positive vibes, energy, gamma rays to HHT, or just love--I'm open & receiving Sister Sunshine! If your thing is praying, I'm open to it Brotha!
Bring it on for Carson!!  You have been troopers that have continued to care, not been afraid to ask, and continued to pray for my child---nothing I can ever say or do, repays that but from the bottom of my mommy soul I thank you.
If you do pray and you've seen how deeply I believe prayers have worked on Carson's behalf so far--then keep it up.
Pray for his safety first & foremost. It terrifies me more & more.
Pray for kindness from his workers & staff that surround him daily.
Pray for the kid that gets to move out & pray for the kids still left there at RoseRock with no other place to go. God bless them & put His hand on them.
Pray for open eyes & hearts as this new hoop develops and what it will mean for Carson. It could just be the gateway to Texas swinging open. Good Lord almighty, I pray that's true.
Pray for those kids--many non-verbal--being picked up & moved from TX to wherever the next place is. I pray it's safe & one day they can return.
Pray for the right people to be in the right place for me to meet with along the next few weeks, so that hearts & the State of OK's budget is opened and Carson can be moved and make the path a lot easier on kids behind him.
Pray I get to make my case in front of those that can help. And make it loudly.
And please pray that this is resolved soon. The waiting, the hanging on by my fingernails is getting to be a lot. At this rate I need a major manicure.

No Matter How They Toss the Dice

I went to see son#2 today with our DHS worker. There were some interesting developments.
She is really going to be promoted--5 months after the fact--starting June 1.
Her supervisor will take over Carson's case & she will still be available for me to contact if need be. Breaking in someone new on your team. Bringing them up to speed --never the most fun of jobs.
Also, us going together was a stand up to the hiney hole therapist--which I thought went well. He was quite polite & nice to us both. But afterwards, she told me that on her last visit---she had needed to cancel. She emailed AND left him a voicemail that her co-worker was coming instead. Turned out to be her supervisor. Well, when Ms.DHS Supervisor got there to see Carson, no one was at the front desk. So she found someone in an office & asked them to page Mr. Hiney Hole Therapist.
This person did. On speaker phone. And apparently, Mr. HHT proceeded to rant & rave about how she couldn't just DROP in and that he was so sick of this situation etc.
Which being on speaker phone, allowed Ms. DHS Supervisor to hear every last word.
Mr. HHT was then informed that, in fact, that IS what DHS does. Drop in. To your home, to your institution. So--take care of your business & shut your pie hole.
Our DHS worker feels this has led to a better attitude displayed today by Mr. Hiney Hole Therapist.
I concur.

DHS worker says DDSD has some group home openings this summer--maybe July--for some kids aging out where Carson could take their spot. She did not say where they were. They need RR to provide a psych evaluation & a full medical eval.
Mr. Therapist is a flip flopper who will say one thing like, "Well, we can't possibly schedule that psych eval quickly. It takes time. Last time it took months to get one done."
Wait 1-2 minutes----"You can move Carson maybe in July? Well, our doctor who does those can probably get here in a week or two. I'll call him today."

"Carson bites his own arms. We've seen him do it." says HHT.
Wait 1-2 minutes---"A new kid has bit Carson & even hit his back. So see he isn't hurting him back, he's not aggressive & can go home." Umm do you realize you've told me you WATCHED someone hurt my kid and that he was bit by someone else???? You idiot. You have told me things you probably shouldn't have, in your hurry to prove yourself right. And I won't ever believe Carson is biting his own arms, until you show me footage.

"Carson keeps peeing in the chair in my office. He doesn't seem to want to potty train."
Again...1-2 minutes--"No Carson isn't wearing diapers. We are just using underwear on him. That's how we're potty training him." says Mr. Therapist. Pretty sure he's peeing your chair because you don't have a diaper on him genius.

 Umm yeah I'm not too convinced he's a grown up to be honest with you. He's so quick to say everything isn't his fault or his responsibility, he can't even see he's sinking his own battleship. His ego is such that he cannot even grasp what to do with Carson since he can't sit down & do group therapy with him. What I wouldn't give to see him in the court room with me. Or a dark alley.

We go back to court in early June, so we'll see what happens between now & then. I have some things still in the works for Texas. Some meetings still on the horizon & some people still working for Carson & I. I have not given up, nor do I plan to. I hate to see Carson moved several times--the stress will not be good to him. But if they need to do this to exhaust all avenues, I won't be able to stop them.
I don't know that I showed you his arms from last time---but the judge court ordered an independent doctor to see Carson. Rose Rock informed DHS worker that they had already done that.
And that he was on two weeks of antibiotics. DHS worker asked for documentation to back that up, and RR did not provide that. DHS worker has sent for new court order for ALL Carson's medical records for while he's been there to be sent to her/copied. They are supposedly working on that.
So tomorrow Mr. Lawyer will be emailed to get on the case of why we can't follow a judge's court order. The judge may not have a lot of say---but you WILL obey what she has the power to order you to do. I personally hope they push her. I'd like to see what happens. Just for kicks & giggles.

Things aren't done, but I feel this new holding pattern isn't going to be this way long. Things will be moving & changing soon. I can feel it in my mommy heart. I'm biding my time.
So I wait. Waiting on the Lord. Renewing my strength so I can mount up on wings like eagles.

But, I leave you with a confession--I have never seen a resemblance between Carson and  I. I always assumed he looked like someone on my biological side. He's so handsome. So different than the other two with his dark skin and almost black eyes.
But while looking through some old pictures, I saw it. The first & only time. We both love to laugh.
And yet we both can be so very serious. You just have to be around enough to see that side of us.

"Me and you. You and me. No matter how they toss the dice. It had to be. The only one for me is you. And you for me. So happy together."

I love those words to that song. You and me. Me and you.
It was always going to be Carson and I.  Always.
There was a plan at work long before I ever dreamed he existed.
When I saw him today, he hugged me for a very long time. Wouldn't let go.
Oh my word did I need that hug.
It was like time stood still in that hug and all the worry I'd been holding inside. All the stress that my chiropractor says I carry in my shoulders--it all melted away.
Carson and I both run hot. We have very warm skin. We always have. It was like our hug just boiled everything down to the basics--I love you. You love me. We can't be together. I hurt. You hurt. I wish this wasn't happening. Me too. I love you. I love you more.
We said all that. Like we always do--without any words.