Wednesday, May 27, 2015

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.

Monday, May 18, 2015

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.


Tuesday, April 28, 2015

Court



 #1--the DHS worker talked to the abuse hotline & they dropped the second/most recent case saying it was a repeat call/same arm. I was livid.

#2--She also saw Carson yesterday & his arm is much, much worse. She had pictures. He is unable to leave his sleeve down and wants to itch/pick at the area which is larger & more red.

#3--The state IS cutting contracts with facilities out of state because their budget got cut. And OK Health Care Authority, which funds Carson's living arrangements, "feel all Carson's needs are being met at Rose Rock. And he will soon meet the baseline of all we can expect from him goal wise in life. And we don't feel like sending him out of state."
Ooohhh really Oklahoma?! REALLY?! So they aren't interested in sending him to Tahlequah/People Inc. They think he is just fine where he is.

The judge was appalled at the new pictures from yesterday. We all agreed it's terribly infected. She asked if a medical doctor had looked at it--DHS worker said RR's dr had. I piped up that RR's only on site medical dr was a psychiatrist. The judge ordered we find an outside dermatologist/dr to come & look at Carson's arm. She later even thought of a Dr to scan/email the pictures too. And wants a report in the next weeks.Our attorney informed the DHS worker if she found people weren't moving, let him know & he'd draft a petition and have the judge sign it.

We discussed how Rose Rock doesn't even WANT Carson there. The judge's hands are tied & Rose Rock has Carson approved to stay until May 5--after that, we'll see if they try to discharge him. The next step seems obvious to me. I will need to make a trip to the capital & call a meeting. Those are the only people who have any power to free up funding for Carson & any kid like him who the state of Oklahoma, cannot meet their needs. The judge mentioned Chicago as the origin of Rose Rock and if it would be better--but should that become a real option, I plan to point out I cannot check on him/be available for him as I could in an adjoining state. But right now, I'm not worried about that. I'm thinking of ways to put the screws to Rose Rock. I cannot tell you how many agencies & people I run into who think that Rose Rock is fantastic.

The stupidity of this state amazes me. I mean, you haven't managed to care for my child--and you feel that's okay. That his physical needs or mental stimulation do not matter--not just to you, but at all!
 Let me just tell you where you went wrong Oklahoma. It would have been sooo much easier & soooo much cheaper you money hungry fools, if you had given me not only what I wanted & asked nicely for, but had actually proven you cared about my child's well-being. Because I can guaran-damn-tee you that now--NOW, it is going to cost you so much more to shut me up about your ineptitude, than it would have to give it to me when I asked nicely. Watch me play your game and beat you at it suckers!

Monday, April 27, 2015

Avalanche

Tomorrow we go to court once again. It's not a new experience anymore. But tomorrow feels important. The facility son#2 is in, wants him gone. And the facility son#2 is in isn't able to treat him in the way that is acceptable. He needs better care & he needs to be safe.
Court is always something I can't predict. I never know exactly what will be decided or what will be determined. I have an idea of what I'll say and maybe what subject will be discussed. That's it.

The main players will all be there as they always are. My son's attorney, my attorney, our DHS worker & of course the judge. It occurred to be this past week that they are all going about their lives as if tomorrow is an average day. Nothing out of the ordinary, nothing special, and nothing that will impact their lives in any real way. Much like you who are reading this post.
But me, I've been counting months, weeks & days to get to this point. I've been making phone calls, sending emails, badgering people, leaving messages, traveling and just processing it all in my head. Working it all out for myself in my head. Plotting. Planning. And most importantly praying.
Tomorrow will indeed impact my life & my son's life. I don't know how yet, but I'm sure it will.

What I don't know is if tomorrow will be the beginning of a snowball or has the snowball been gaining momentum since January? Has it accumulated like I feel it has? Has the "snow"-- the issues I've been working on for my child, stacked up into a drift? To me it feels like the snow has all gathered on the edge of a cliff and it's waiting. It's waiting for one loud sound, a jostle, a shake--and it will all come down like an avalanche. Tomorrow feels like it could be the end of my world.
It doesn't mean it will be, but it feels like it could be.

There are several ways tomorrow could end up. I fully expect between the pictures I have of Carson's arms, and the DHS worker filing papers to move him out of the state--that we will all agree he cannot stay where he is currently living. That would be a relief to me.
But what if the state will not pay to send him to Texas? What if the state of Oklahoma sends him to Tahlequah where there's an opening in May & I'm afraid he'll be stuck until he's 18? What if he's IN Oklahoma when he turns 18 yrs old which will mean they will put him in a house with a worker to live the rest of his life alone?
My heart & mind ache from all the questions and worry I've felt the past month. It's been all consuming. Scary.

I've worked away for him, not thinking of anything else, and I've distracted myself in any way possible. Trying to keep my mind away from the "what ifs", knowing I have no real control. I'm a pawn in a game, pretending to be the queen. I'm doing my best to move the pieces and make them want to help me win. So many pieces to move. The facility in San Antonio lost their contract with Oklahoma. Will Oklahoma make a new one for Carson? Will this horrible decision of our state kicking those kids out, actually make room for my child? Is this God's plan to get Carson in there?

I'm trying not to get my hopes up too high. I'm a realist and I by nature, like to be prepared for the worst case scenario. But I can't seem to allow myself to consider it very long. It's upsetting.
It's debilitating. I have one other plan in my back pocket. I have kept it as an ace up my sleeve. A "just in case", "break glass in case of emergency" type scenario---the press.
I played the card game Spades in college. A lot. You kind of had to. I'm not sure I knew anyone that didn't sit down in the student center and play a hand now & then. Spades is all timing. When to play your trump cards. If you get a good partner or even just a person you know really well, you can play it all with your eyes. Time it all out, spanking tricks left & right---winning the hand--IF you have the timing right on your trumps. You don't have to have the biggest trump---the ace of spades--but you need to have your timing right. And we all know an ace never hurts either.

I need my timing to be right when and if I use the press, once I do it I can't go back. And I won't be able to play the game the same way I have before. All the rules will change & the strategy will shift.
I don't want to have to do all that. I don't want to have to start a new game. I want to finish the one I started. I want to win. I'm pretty competitive. Okay, I'm a lot competitive.
But mostly I'm tired. I'm tired of fighting & I'm tired of seeing my son unhappy. Unhealthy.
I want to see my son happy, healthy & to see him learning. I want to see the finish line and the light at the end of the tunnel.

I spent this Saturday on a farm all day. I enjoyed the peace, the quiet distraction & the nature. Feeling the breeze through my hair. After so many rainy, cloudy days lately, enjoying a blue sky with not a single cloud in it made me smile all day. I felt like God was physically granting me peace. Peace for my brain. Peace in my heart & peace for my soul. I'm trying to hold on to it. That realization that God is bigger than all of my plans, phone calls, emails & contacts. God is bigger than the state mental health budget. And God is bigger than anything I may have forgotten to do before tomorrow. God has brought Carson & I this far---and I'm not jumping off the train just because it got dark when we went through a tunnel. I'll wait. We'll wait. Carson & I have faith. Expect miracles.


Friday, March 20, 2015

Powder Keg

Dear Carson---

I was just with you. My time with you is always so precious & it goes so very fast baby. I will never forget every detail of this visit.
I came in with my guard down. I was more focused on somewhere I was going afterwards. On the big picture, not on this visit.
I was complacent. Extra complacent. The therapist told me your arms had healed. That I would be surprised at how good you looked. And because of that, I wasn't expecting to see you torn into. A piece of you literally missing. A piece that we'll never get back. Just a hole. A new scar one day.

Blood all over your shirt. Your blood on my shirt. You were so calm. I was calm.
No one had answers. We walked to the nurse. I was so quiet. I don't think I said three words in 20 minutes.
Carson there was a lump in my throat the size of a golf ball and Mommy couldn't hardly breathe much less swallow.  Did you feel me shaking? You had to. My hands never stopped touching you.
I brought you there for your safety, the family's safety and I let you down baby.

We walked for quite awhile today and I talked to you telling you all about your brother's birthday party, his basketball camp. I told you how much we missed you, and loved you. You are missed baby. Every day. I couldn't bear it if you thought because we weren't with you we forgot you. When I dropped Grayson off for his playdate so I could come see you, he reminded me to take pictures and tell him all about you when I got home.

I can't show Grayson these pictures Carson. They would scare him. He would be so sad to think someone was mean to you.
I called your therapist on the drive home. I asked if they found out what had happened.
He said some other kid just hit you out of nowhere & then you were upset and bit yourself.
Baby, I don't believe them. Mommy has been too trusting. I've taken their word for it that you've been biting your own arms & I don't believe them anymore.
This had JUST happened, I know it. You were calm, not angry. This was a bite---a hard, knotted, swollen bite mark. The only mark on you at all. That's not how you are when you're upset. There was no blood on your mouth, but there was peanutbutter from lunch. And if this happened before lunch, why hadn't you been to the nurse before I took you?? More questions than answers.

Baby--with every fiber of my being I do not believe you did this to yourself. And I'm no longer believing you did all the other bites that will leave scars all over your arms. Your arms and mine have all those white lines don't they? Battle scars from autism. I don't want mine to ever go away.
I used to try and hide them. I'd wear long sleeves to church so no one would ask me what happened.
So I didn't have to worry about anyone thinking less of you.
You know what? Now I don't care who sees them. I want them to be seen. I wish I had more. I wish I had every single scar off your arms put onto mine. I would take them for you if I could.
I hate that I've let this happen to you. I hate that I am forced to trust anyone with your care that isn't me. It makes me so angry.

Car-Car I keep that anger bottled up. I have learned to not let that out. It's a powder keg of emotions waiting to explode on a daily basis.
I don't know what a normal reaction to this type of thing is anymore. I wish to God I did. What's okay to feel and act on? I've played the game too long haven't I?  All I know is I felt so disgusted. I wanted to throw up. I had to keep myself together for you. You didn't want me to leave. You had such a grip on me to not leave you, I have a couple bruises on my arm from your grip. You tried to talk to me. You kept making a noise over & over. Staring me in the eyes. Imploring me to know what you were saying. It broke my heart in half. All I could say was I know baby. What kind of mother leaves their child after that??
How horrible am I to walk away--to leave you there??
I sat in the car baby and hot tears leaked out. I was shaking trying to keep myself together. Sick to my stomach and I was paralyzed. I couldn't leave the parking lot.
I felt helpless. So much stress. How do I hold up my own body? How did I let this happen?
I was numb and feeling overwhelmed with emotion all at the very same time.

I work so hard at keeping a lid on this powder keg Carson. I try every day to keep all my emotions in check when it comes to you. It won't help you if I unpack them all from the powder keg and have a pity party. But baby, today they lit the fuse.
Honey--mommy is going to a place she can't come back from. I think they think I'm stupid Carson.
The mom in me cannot let them take advantage anymore of my patience and the barrel they think they have me over. My job is to do as much as I can for you every single day. It wasn't enough today baby. I'm so so sorry.
Hurting a vulnerable person has lit the powder keg that contains my mommy soul & I will not rest until you are out of this hell hole and everything they do & don't do is brought under a magnifying glass to be gazed on by the world.

People have to see our arms Carson. They HAVE to look and be disgusted. They have to be made to feel uncomfortable and they have to not be able to not forget those images. THEN, they will help.
You can't speak. You never have. My voice is yours and although you've been away from me, more than with me the past 3 years of this journey--I WILL not let this voice be quiet any longer.
Yes my focus was on a bigger picture--and has hard as it is for me to admit, I think this will be good for the outcome of your journey. I think this was a key turning point.
I hate with every thing in me, that this happened to you. But I know with just as much inside of me, that this is IT baby. We will get you out of there and we will not be going back. I will make this place a place that no one who sees it's disgusting laziness, will be able to look away from.
Your story will be heard and as long as I breathe you will have me to fight your battles baby. Consider the fuse lit.

~Mommy

Wednesday, February 25, 2015

A Peek

You might think this is a post about someone getting a peek into the autism parts of my life or my children's. But it's not really.
Today I got a glimpse into how other people view MY life. The happenings with Son#2 and how they would react differently than me. How this journey the past three years has changed me.


I went to see Carson today with a foreboding feeling in my stomach, really nervous about what I'd find. I knew his new therapist had left & he had a new guy and that was a lot of change. Throw in the wintry weather we've had lately which would keep him indoors more than out, and it probably didn't make for a happy Carson.







Because I was nervous, I asked a friend to go with me at the last minute.
She gladly accepted & had always been curious about the situation but never seen Son#2 at his "camp".

As soon as we saw Carson he was happy to see me & even smiled at me. I did find out that he'd been in quite a few holds recently & some lasted 25 minutes. I was stunned. I can't remember the last time the holds were that long. I even ask the therapist if that was legal--which he assured me it was.
He warned me Carson's arms would look pretty bad again.
Apparently, potty training has been ramped up & once again not surprisingly, Son#2 is not happy about it.
A lot of his aggression right now is stemming from the forcing of the potty training rituals. To the point he is even waiting until he has therapy with this new guy---and pees in his chair in the office!!
The poor therapist---he looks at me & says, "This may sound crazy but I think he's doing it on purpose."
I threw my head back & laughed and told him I was pretty darn sure it was on purpose too.
He is throwing fits when taken to the restroom  & made to sit. And one evening he even fell asleep they made him sit there so long.
I took all this in. Made my notes. Offered some comments here & there.
Then my friend decided she couldn't hold her concerned comments back anymore.

In a pause in the flow of conversation she says, "Okay are we going to talk about the elephant in the room here?! How about we realize he is scared, doesn't enjoy this or whatever & it causes him to harm himself & be in holds---so you STOP trying to make him potty train?? Then everyone is happy? Is anyone else seeing this?!"
Everything she said was what any normal, sane person or parent is thinking. But I'd been down this road before & knew the cycle. I hadn't planned on fighting this. I knew there was no point. But she reminded me how others must see all this. I was so proud of her, speaking up for MY child, and just trying to help in any way she could. What mommy heart wouldn't want to step up & help?
I felt such love & gratitude that my friend---my friend I chose to bring as an ally in this small summit of today in this huge war I'm fighting, stood up & said no. She said hell no, this isn't right--how can it be? Why aren't you doing something--and she didn't sit blindly in the corner unaffected. Her heart was moved & she said so.
**I have to tell you--my friend radar is stellar. I've fine tuned it & it's at it's peak right now. Just when God knew I'd need them the most--my arsenal is full & at the ready in the friend/support department.**

To answer her the therapist explains about the recent DHS & DDSD audits Rose Rock has undergone--ahem--and how there have been some changes implemented. And one of those is Carson needs to be working actively on his goals to stay where he is & "meet criteria". Well, just for as long as we want the Oklahoma Health Care Authority to pay for his stay. It's an angry cycle I don't condone & at the same time, I understand having played this game before with them. It's like an angry Plinko board where I get to throw down a chip & pray to the game show gods that it lands in a big money slot.

I told the therapist some stories about Son#2--to prove his Thinking Reasoning skills are above his IQ number. I believe he was impressed.  I let him know, while I realize that Carson's diagnosis has an imposed limitation, it is not something I agree with entirely. I see it more as a ladder that there are some rungs missing in spots. Maybe you have three together & it's missing the next two and then goes on for a ways all intact.
To the average person or parent I'm sure that seems rather perplexing. If a baby sits up, his next stage is to crawl, pull up to something, and then walk--right? You don't often see a child do these steps with big gaps. (I stress often because my children didn't crawl--they just pulled up & walked off.)
Carson can do some things an average kid his age or IQ could do. But don't be surprised if he doesn't know not to touch the stove just because it's red. We have gaps. Missing rungs on our ladder.
Potty training is a big ol' gap. It doesn't please me. But by all that is holy, it is certainly NOT within me to MAKE a child do something that causes them so much distress they bite huge chunks out of their own flesh continually!

I let the therapist know I understood his position (like a waitress who didn't cook the food) & I hoped they could please find a way to temper the potty training escalations. He had another theory that Carson may be imitating behavior he's seeing from other boys on his unit. Apparently there's another kid who bites his own arms. It's a possibility I will entertain & definitely bring up to the judge in my motion to get him moved from Rose Rock quickly.
Coming back to the "peek" theme of this post,  I found in talking to my friend as we left---and another parent who has a child similar to Carson later today (yet doesn't have any aggressive behaviors)--was my behavior slightly baffles them.
***These are MY words to explain their reactions to the situation today.***
I think it's hard for them to understand my calm nature when encountering todays drama. They both checked in with me several times to make sure I was okay after seeing Carson's arms.
I got the impression my non-reaction was giving them cause to worry about me.
How would I react? Be upset? Cry? Flip a table?  How was I holding it all together? "You're sure you're okay?"

I told them both, that the glory of that miracle belongs to God. I won't pretend to know how I don't scream, or throw a right hook to people's throats on a regular basis. I would love the secret so I could pass it on to others & selfishly use it other areas of my life where I might be known to throw a hissy fit. Or two.
All I can say is I made peace with my son's journey a few years ago when it all began. I had to, to survive it. My ship was sinking fast the moment he went away.
Dramatic as that all sounds, it is the basic fact of the whole enchilada.
I knew going in this was big. It got bigger as we went & it gets bigger as we continue still.
I am continually amazed at how much bigger this continues to get & how much deeper my faith extends. I prayed. God answers. He continues to do so. I am thankful.

That being said, there is the "in the moment", practical side of things. I AM human.
I am a mom. This is my child. And I am a girl. How do I not break down in tears today when he grabs my arm, and in his non-verbal way, begs me not to leave???
I am the girl who's dad would try to distract from seeing a dead dog on the side of the road or I'd cry.

What I told my friends today was this--I can't do as much for Carson anymore. But what I can do is work my ass off for him. And to make the most headway, the biggest impact & most progress I can for him---I have GOT to keep my wits about me. I am a people watcher & I have watched parents spin out---use their energy too quickly. It left them in the ditch on the side of the racetrack. Yeah I'm not doing that. I'm in this to win it.
I will pace myself, I will find a rhythm that works with each situation, each person in control of some aspect of my son's life and I WILL work them. And to do that, to play that game, to be thinking two steps ahead, to be aware of all their angles, games & manipulations, I have to keep it together. I detach. I step away probably in much the same way a doctor does with a patient writhing in pain. It helps no one when he is flustered and caught up in the emotion of the moment.

Don't get me wrong--this does not mean you won't find me baby talking him & kissing his neck-- crying on the way home from seeing him or having  a "woe is me" days. Oh I have them. I recognize them, I acknowledge them & I move on.
HA!  I absolutely do not do that all the time!!  85% of the time I do not move on until days, maybe a week later.
I'm not a robot. I sit down with my Mega Stuff Oreos and I phone a friend. I scream, cuss, cry and complain. I wallow. I empty my heart. On really bad days or weeks, I close it all down & isolate in my shell from the rest of the world---friends included. Self-preservation is the name of the game.
But eventually, I remember that I can have those days/vacations from the work I'm doing--I just can't unpack & live there. That arsenal of friends is learning to let me feel what I feel, when I need to & ride that wave. Another reason I like them.
There's your peek.

Thursday, January 29, 2015

Fighting Moms

I had lunch today with a friend. A fellow Fighting Mom friend.
Her son is with Carson at Rose Rock, in the same cottage even.
No two children are alike there but these boys have quite a few similarities.
She and I met by random chance on my birthday last year.
We've struck up a unique friendship that will last us for years to come I'm sure.

My friend was at Rose Rock yesterday & said there are some changes they are implementing since the Oklahoma Health Care Authority investigated last week.
They went in & checked out the kids rooms, checked on their cleanliness, clothes they wear and even talked to some of the children even.
So this week Rose Rock made some changes. Giving the kids haircuts & also they put up some cameras around the campus. Shocked? I know I am. There are now cameras in the cafeteria, by the basketball court, by the gate where people go in/out and in the kids cottages. This is all terrific news, but what I want to know is who is monitoring these cameras. And after all the administrators go home, who is monitoring them?

Don't get me wrong, I am so very happy that the pressure we applied & asked for at the Capitol meeting, is being demonstrated.
But, DHS is coming this next week to auit Rose Rock and to keep it completely real with you, I'm wondering how closely they'll be looking. It's like dirty cops trying to investigate the mob in my eyes. So I'm cautiously optimistic, because my God can use anyone. I look forward to hearing what changes Rose Rock will make after this next audit. Any changes for the positive at that facility, effect my son & therefore please me.

My friend & I go together tomorrow to see Peoples Inc. in Talequah to see their set up for our boys. Supposedly, there will be a child who turns 18 yrs old in May and ages out of the system, leaving an opening for one child.
Even though there are two kids ahead of Carson on the list, somehow they are saying he would probably get this slot. We have plenty of questions & concerns going in. I've heard it's fabulous & she's heard from someone, it's horrible. I'll be shooting for my own hand--as Princess Merdia says in the movie "Brave".
We'll keep ya posted. Thanks for any prayers you want to throw our way tomorrow. I couldn't really tell you if we are wanting it to suck or be terrific. This is Carson's last chance in Oklahoma. I struggle because if he is moved here & fails, I will need an immediate Plan B because the door to Rose Rock will be closed. Which is good---but being in Talequah is the last stop in the state for him---we either have to rule it out before he even goes & save him any extra moving/changes. Or, we have to send him & wait and see how he does. All while holding a plan B in my back pocket waiting on the sidelines to see how it all plays out.

This is exactly why I have until April/May to check out Peoples Inc---see if it even has a fence or if they even WANT a kid like Carson. And why I have until May to make a plan B and get it lined up.
Which looks like perhaps another trip to Texas is on the horizon to meet with a super secret lady who I think may just be the KeyMaster in Texas & know the GateKeeper in Oklahoma.
Have I mentioned how tired I am? Yeah I'm kind of tired. Your prayers & encouragement have kept me going when I wanted to lay down & nap. Or watch Netflix. Thank you for that. Really. If I'm not returning your calls or answering your emails or texts---please forgive me. I'm sort of really sick of myself right now & always being in business mode.  Where did January go?