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.

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!

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.

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

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.

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?

The Gatekeeper & The Keymaster

This post is a of a highly personal nature. I hope I feel brave enough to post it. But it feels like I'll be baring a bit of my inner tickings to you if I do.
I woke up this morning scared. It's like those scenes in movies where the people wake up in bed sweating & out of breath--that kind of scared.
My faith today was suddenly as tiny as the mustard seed the Bible talks about. Satan had me by the throat with a choke hold.
A friend let me know, believing I'd fail today is a lie from the enemy and so I needed to speak truth to that lie.

So I started my day with son#3 in bed snuggling him because he asked. (the one I'm yelling to be quiet & quit repeating things 17 times--that one)
 I slowed down the whole hectic morning, got in under his covers, threw my leg over him & snuggled in. I lay there listening to him softly giggle at his cartoon and just enjoyed that he is mine & in my care. My mind was stilled.
After I drove him to school I decided a good run/walk might work off some of that nervous energy I had before court & then I comforted myself with my favorite playlists and my favorite "comfort clothes".  My body was now calm. Time to quiet the spirit.
The best little phrase I ever heard was years ago when I was a teenager: "The best way to get back on your feet, is to get down on your knees."
So I did. Which is what I do before each court date. Alone. On my knees, talking out loud to Jesus.
Asking for things, begging for others, some tears, some sentences I can't find the words to express. Worrying about other people. About my worthiness to ask for such things for them or myself. Thanking him for his sacrifice & grace. Thanking him for letting me have Carson for 13 years in my care.  Spirit quieted.

If you don't have close friends who will speak truth to you, you need to find yourself some fast.
I have a few & feel quiet lucky that I do.
I texted one and said, I felt like Moses. Her words---"But just like Moses you have friends to hold up your hands to help defeat the enemy when you get tired." (Exodus 17)
Oh boy did I.
Another one sent me a text to remind me "It Takes Two To Make A Thing Go Right"---a song stuck in my head lately--me & God. I smiled.
Her daughter sent me a scripture & such encouraging words, that I teared up.
One had a great idea to take a scripture & write it down on a piece of paper & put it in my shoe----to stand on the promises of God to help me be strong. So I did it.
And then two of my friends came to court with me today. That is some kind of love. My heart was full.

The DHS case worker & our lawyer all had plenty of time to sit & talk to us as we waited for our turn on the judge's docket. We discussed my trip to Texas and how the places/slots at the Autism Center of Dallas were full, but there are spots open in their sister location in San Antonio. Not my first choice.
I also told them I received a phone call from a woman who'd been in my meeting at the Capitol. She works for Child Welfare Services & is Specialized Placement. She was very interested in how Carson was being taken care of. That's a plus, but she seemed very into the idea of San Antonio. Not that Texas isn't Texas, but every time she said it, I said, "Dallas" in a corrective tone. Just making myself plain.

I talked SO much in Texas last week. Saying the same things over & over. I was very sick of my own voice. Turns out today in court I didn't have to talk to much. After I caught the lawyer & DHS worker up on all the amazing bits that make up the Dallas program, I guess the lawyer went into the court room & gave them a heads up. Because when we were called & brought in, I hadn't been sitting there 15 seconds and a man to my right, who whispers like Jackson, says, "She went to Texas last week all by herself & visited the place."
I glanced over my shoulder at him, caught his eye, gave him a dimpled, polite smile.
Which turned out to be a smart move. On the tip of my "Texas attorney" whom I spoke with last week, it was in my game plan today to speak to Carson's attorney while I was there. Befriend him & make it known I wanted to keep in touch with him so we could stay on the same page. I need to figure this man out---see if he is just doing his average best on this case or if he's really understanding where I'm coming from & on the same page as we are. And make sure he understands what IS in the best interest of Carson since he informs the judge what he thinks.
Turns out--this portly gentleman who can't whisper is Carson's attorney.

The judge very quickly wanted to know where we were at on moving him to Texas--I let our attorney address that issue & bought my time. Our DHS worker spoke up right away to let the judge know that DDSD has Carson 3rd on a list for placements. They're thinking this spring a child will be aging out of a group home type place in Talequah, OK. And that Carson can have that spot.
However, I pointed out, although math is assuredly not my strong suit, how does he take this spot, with two other children ahead of him on this list?
We all had a chuckle & she went on to discuss that these other children will have to decline this placement themselves or it will have to not fit their needs. So it may be a moot point saying this spring or we're missing something. The Judge even wondered aloud if People's Inc. (the name of the place) could HANDLE Carson. Our attorney pointed out that Carson is a flight risk.  The DHS worker pointed out apparently Rose Rock sent another kid like Carson to People's Inc. No word on how they're handling him. I've met some kids similar to Carson, but never one with all the same behaviors.

The judge looked at me & told me straight up: "I'm sorry that you asked the state for help, and we're now all relying on you to get the information for us."
Me:  "It's fine. It's my job. He's MY son."

She also told me that she only knew of them moving one kid out of state before.  (it was to Austin--TX Neuro) I told her that I met children in TX that were from Oklahoma & currently the place in San Antonio, HAD a kid from OK. That the intrastate compact was just closed right now. Our contract with Texas was no longer open. Then we all looked around the room at each other asking WHO has the authority to re-open it.
Turns out to be Oklahoma Health Care Authority/medicaid/DHS---shocker.
So the judge tells me I'll need to prove that People's Inc cannot meet his needs to exhaust Oklahoma's options. And she told me  to stay in close contact with People's Inc & document like crazy. 

As I left the court room I stopped by the table with Carson's attorney at it---introduced myself---gave him my contact info & a big ol' smile. I told him I sure would like to stay in touch. He gave me his card & as I walked out I heard him say he'd never met Carson & driving to The City was pretty far for him. As we got outside & our attorney turns to leave, he is more engaged than even last time & I'm slightly surprised by his interest. He tells me, "Keep working on it & keep me in the loop doll."

New plan---FIELD TRIP! I'll just go see People's Inc next week. See if it has a fence, how many staff. And maybe take some picture of Carson along to show them. Oh and take the DHS worker (who offered to go) and Carson's jolly attorney who can't whisper, with me. Even if I have to go by his house & drive him myself, he's going.  I might just make People's Inc cry uncle before Carson ever packs a bag.

Now---can you see the dilemma yet? Can you see the double edged sword? I want him out of Rose Rock as soon as humanely possible. I want him fed, bathed, hair combed, nails clipped & him protected from himself. But---that may mean a small move to People's Inc, knowing it's not long term. Or it could "work" and turn into long-term. Change & shake up for Carson---just because--never my first choice.
OR--wait & leave him in with people who can't meet his basic needs when they KNOW I'm coming & who's version of  "therapeutic holds" involves a kid sitting on the ground limp looking like someone is doing the freaking Heimlich on him, until a place in Texas is approved.
Rock, hard place--meet doubly hard place.
 I will also be calling the Texas people & asking---who signed off on those kids you have from Oklahoma? What was the person's name in Oklahoma that can reopen the contract with Texas? These names are protected like National Security secrets!  Who are the Gatekeeper & the Keymaster???

Heaven

Son #3, my 8 yr old,  comes to me 15 minutes after being put to bed. Says he has a question. I tell him to get in my lap where the best answers are.

He snuggles up & with tears forming in his eyes, tells me he wants to go to heaven but he doesn't want to die. I ask him what made him start thinking on all this.

Son#3: "Well, I mean, I wanna go but I don't wanna die one day. I'm scared to die."

Me: "What if I told you I was scared of dying too?"

Son#3: "But you're a mom. Mom's aren't scared!"

 Me: "Oh there's plenty that scare moms. But, our job is to protect you so you live a long, healthy life 

and you don't have to worry about things like dying until you're an old, gray grandpa."

Son#3: "What happens if I die and I'm still just a kid?" 

(Tears keep leaking out one by one after each question & I kiss my finger as I wipe away each tear. He's trying to keep a small smile, bless his heart.)

Me: "I'm pretty sure it's automatic you get to be in heaven with Jesus. He likes little kids a lot. He even talks about that in the Bible."

Son#3: "Well, what about if I have a friend & he dies and goes to uh, the...(points & whispers) the place down there. You know H--E--BLANK--L. What happens to him?"

Me: "I think it's a place no one wants to stay & it's pretty hot. I promise you don't need to think about any of this just yet baby."

Son#3: "So what happens if I die when I'm old?"

Me: "Well, at some point you're going to be old enough to understand what God's asking of you in the Bible. And if you want to do what He asks of you to do to get to heaven, then I believe you're good. But that's all up to God. He loves every single person, even when we aren't making good choices. And he shows mercy a lot. Just like I will ALWAYS love you, even if you don't make a good choice. It's going to all be fine, I promise. You need to just keep being exactly who He created you to be. Grayson, with your big, giant, caring heart. Just you. Nobody else. And what do I tell you when you leave for school EVERY day??"

Son#3: "MAKE GOOD CHOICES!"

(last tear wiped)

Me: "Baby, I want you to know, you can come & sit on my lap when you're any age, and you can always come & ask me ANY question, about ANYTHING.  I may not have the answer but I will always love you, and we can always talk about it no matter what it is baby."

Son#3: "Okay Mommy. Hey Mommy?"

Me: "Yeah baby?"

Son#3: "Can I get that app we were talking about for the iPad now?"

Sigh!

State Capitols For 500 Alex

Let me just say, today started out a little unusually as I took stuff to the car to load it & when I turned around there was a pit bull heading from the garage into my house.

I hear one of the poodles going CRAZY. (yes poodle)

I start inside and end up following a guy into my own house who owns the dog. That dog was scared to DEATH of my poodle. Just wanted to play. The guy lifts it up by the collar & carried it out apologizing. I stood there stunned.

After I finally left the neighborhood it started sleeting I kid you not.

I'm so glad these were not signs of how my day would go.

But wait! There's more!

I drive halfway to Oklahoma City, and get a phone call from Rose Rock saying, they are sorry but Carson's therapist is sick & the therapy appointment  is cancelled. I tell them, umm no. I am almost there---I can at least bring Carson his robe/flannel pajama pants & see him--right???

They hesitated but said they were pretty sure I could. They'd check on it.

I kept driving. No one is keeping me from seeing my kid. Not gonna happen.

 

 I pulled in & didn't even buzz the intercom, I pushed in the gate code & drove through.

Came to the front desk, the guy says, "Didn't they tell you--his therapist is out sick.  Your appointment is cancelled."

I said, "Didn't they tell you, I was already over halfway here. A two hour trip. I'm here to see my son. Please."

(Cue the big sweet smile with dimples.)

He gets on the phone & calls someone. Gets back to me telling me to have a seat, he was gonna see about getting me an escort.

I'm sorry---a what now?

An escort.

For....

To stay with you & Carson.

Uh huh.

Okay. Get 'em.

I wait--Carson shows up, filthy. Again. Hair not combed, face not washed, nails not trimmed & I won't mention the filth that in underneath them. And just like Thanksgiving, pants that will not stay on his body.

I am hardly impressed. We walk to a room, I take some pictures--which I was surprised I was allowed. Then over to the cafeteria where Carson sat in a corner facing a wall, by himself. (he tends to steal food off other trays)

Other kids & workers come in. I was shocked by what little food was on his tray & his little Styrofoam coffee cup sized fruit punch with film on the top. Other kids not eating, so staff takes their food & gives it to other kids.

I was surprised by how disinterested he was in it at first. They never washed his hands & they let him EAT with his hands.

I kept it alllllllll together. Took pictures on the sly--never of other children--even though my mommy heart wanted to. They never even cleaned up his ketchup face or hands afterwards. I would have, but there were not even papertowels around. Much less a sink. I left soon after.

 

My meeting at 2pm at the Capitol was because recently, I was asked by a fellow autism mom we'll call Betty, that I had never met  to attend a meeting at our state Capitol to discuss the facility Carson currently lives in.

Today that meeting  included Rep. Newell, Rep Moore & Rep Jordan. As well as maybe 10 different Dept of Human Services workers from different agencies.

We had Office of Client Advocacy, Child Care Services & Child Welfare Services all represented. Apparently the invitation was extended to DDSD, Rose Rock and Oklahoma Health Care Authority & they chose not to respond or send anyone. I'm shocked I tell you, shocked. (insert sarcasm)

Another mother we'll call Wilma who's son has recently turned 18 yrs old, has trail blazed for Carson & then myself.

There were maybe around 15-16 of us total.

 

Betty had called this meeting with Rep. Moore when she had met with him previously in September.

Betty says her son was in Rose Rock 9 days & later told a therapist that he had been molested while there.

Wilma said her son had unexplained bruising while there, just like Carson had. Neither of these women has a child there now--but I do. Betty kept saying she took her son out of Rose Rock & we left ours in.

Not winning you any points with me Betty. Your son doesn't beat you up at home daily thank you very much.

Betty has proven herself to be a little of a loose canon when talking to me previously so I knew going into this meeting, she would have her own agenda & be someone I will sit back & watch. Wilma has always been very sweet & helpful to me but seemed like she was carrying a probably warranted, chip on her shoulder from having to blaze the special needs petition trail.

Wilma also brought Fred her significant other & attorney.

 

Betty immediately let it be known she was hosting this party & even went so far as to sit herself at the opposite end of the table from ALL of us. She wouldn't even sit next to me, but several chairs down. So when she spoke, we ALLLLLLLLLLL had to turn & look at her. I refused. Immature you say? Petty maybe?

I never give into a 2 yr olds tantrums and give them the attention they seek. I usually the leave the room & tell them to come find me when their done with the drama. Since I couldn't leave the room I looked away.

The House Rep's asked us to go around & introduce ourselves so they knew where everyone was coming from perspective wise.

When it came to Betty's turn, she went off on a tangent for 15 mins until one of them reigned her back in, reminding here they didn't even know the rest of our names yet.

 

Betty continued to hijack what anyone else said & continual say her son wasn't like the other children because he could talk. I quietly pointed out Wilma's son had some words too.

I also mentioned my son was the only one who couldn't speak, wore diapers & was the only one currently living at the facility in question. Point Swaim. Back on course/task.

 

Needless to say Betty sort of sunk her own battleship from my point of view because she kept getting all coo-koo for Cocoa Puffs, getting off point & talking crazy.

I am sorry but you cannot accuse the women sitting across from you that work for the Department of Human Services, of being personally responsible for the bad choices or decisions other workers have made.

This will get you nowhere with them & that helps your son how?????  Exactly.

You HAVE to keep your big picture in mind & follow the train. The train of thought YOU called this meeting about.

Thank you for playing, we have some nice parting gifts for you.

 

Wilma, was doing fine until it came to funding & Texas. Then she sort of started bouncing in her seat. She got loud---being that'd it been 20 minutes until Betty last spoke, she piped up that Wilma needed to use the microphone so Betty could hear her down at her end of the table.

MAYBE, you should have thought about that BEFORE you sat down there on your throne by yourself lady!

But I digress.

Wilma, continues on about the past & her son's years spent in Texas, the numbers of financing it all, how many kids are in the state of Oklahoma total, and how Oklahoma needs this & that for future kids coming behind ours. All true. But...derailing the train Wilma.

 

In the mean time, at certain strategic times I am sliding over pictures of Carson's bruises. It comes up about me wanting to send Carson to Texas. Rep Newell asks me why I want him to go there. I keep it simple--Oklahoma can't meet his needs in the ONE facility it has. And as much as I'd like to tell you Rose Rock is meeting his physical needs I can't even do that. We are talking about maybe 1% of the kids on the autism spectrum in the state of Oklahoma. Maybe under 10 kids in the entire state like Carson. They are not equipped for these kids. Texas touches Oklahoma, so I can easily see my son location wise. It is the biggest state in the union which means more money for mental health, which translates to more array of facilities available. Not to mention more kids like Carson & staff who've treated them, encountered them & worked with them. I am not expecting a cure, I am expecting life skills. Help with communication & potty training. This is not too much to ask for the longevity of my child's happiness.

 

We discussed Dr. Prune (my pet name--remember him from the conference call?) and there were eye rolls from the DHS agencies, and nods of heads in agreement at his biased unprofessionalism. And his lack of compassion when dealing with say, anyone with a  lower IQ than average. We all agreed & let the House Rep's know that Dr Prune holds several major playing cards when dealing with these kids & their care. Especially concerning where they can or not go.

 

By the end of our several hours together I think we all came to be on the same page that although Rose Rock is all that Oklahoma has for kids like Carson---there is no reason to allow it go on unchecked.

I let them know point blank that although it is a private facility, we all know about the politics of this game.

Rose Rock can say they want Carson gone & set a discharge date at any given time.

Oklahoma Health Care Authority can say--we can't stop you from discharging Carson---however,  if you do, we will pull alllllllll these other state funded kids we PAY YOU to keep. So--it's your choice Rose Rock.

It's easier & cheaper for Rose Rock to keep Carson until he's18 years old. This is the game & let's not go on pretending it's not how it's worked & will continue to do so unless we keep it in check somehow, by working together. Checks & balances people.

 

I'm pleased with everything I was able to make heard for Carson today. I let them know I in no way want Rose Rock to close---I want it restructured & held accountable for it's care & actions towards every single child there.

I let them see a small peek into what living in our world is like, and how we know what is best for our kids--not Dr. Prune.

My feelings on Texas & the level of intellectual stimulation I expect for my son is my priority. That I will be making a trip to Texas very soon to bring as much information to court in January as I can.

I left them with the knowledge that while I am not pleased with some of the things that have happened on this journey, I see hope, and serious people in this room who want things to change. And that I look forward to hopefully being a part of that.

 

I was approached after the meeting by a couple of the House Rep's who gave me their cards--one who's parents fostered kids in wheelchairs, diapers, etc. He said he admired my resolve & wanted to continue this another time with me. I told him I was sure I would be around.

Several of the DHS agencies approached me giving me their info---taking mine.

One asked me what I used to do in the line of jobs. I told her I worked at a place just like Rose Rock after college in Little Rock. She wanted me to know I'd make a great child advocate if I wanted a job after I get Carson settled. I just might do that lady, I just might do that...

If there's one thing I've learned over the years, you have to keep yourself together. I did that today & with that came their respect I think. Rose Rock will be looked into, the investigations into the abuse won't be let go any longer & some new people are looking to help Carson & hold others accountable.

Everyone was heard today--they all had their agendas and they were heard. You can't get much better than that.

Holidays

There are quite a few holidays throughout the year, and so many memories I have from past holidays with my boys. The memories are a mixed bag of good and some bad. Today is Thanksgiving & we've had a very good day by comparison.
This morning, I didn't get up at 4am with son#2, but I did have to pack a special lunch to take with us for son#1. Today the husband didn't have to stand outside & feed son#2 from plates that I bring in succession for them both. But I did miss the appreciation that son#2 would have had for all the terrific food we had. And how he would have "helped" me in the kitchen last night, never leaving my side while I baked.

After eating lunch today, our family got to stay & visit with family instead of immediately rushing off after meeting the threshold of sensory overload for the boys.
I remember two years ago, our after lunch plan was to take a walk. I stayed home to clean up the dishes. The husband took son#2 and #3 for a walk around the neighborhood.
I got a call in less than 10 minutes that things had gone down hill suddenly.
Son#2 was getting naked, and when the husband tried to stop him, son#2 started screaming & scratching him.
I got in the car & started driving in the direction they had taken off, looking down side streets, with no idea where I was going.
They were 2 blocks away as I barely came to a screeching halt & threw the car in park while I jumped out.
We together were able to push son#2 into the backseat, yelled at son#3 to get in the front with us, locked the doors & I took off as fast as I could.

Two blocks doesn't sound like very far to drive. Shouldn't take too long. Yet, I remember it feeling like 30 minutes was going by. Son#2 was livid by this stage and sitting behind me attacking me the entire way. Grabbing my neck, scratching my face and neck as I tried to drive without wrecking the car. Trying to keep my hands on the wheel, but defend myself. Trying to keep his hands from grabbing my eyes. Screaming. So much screaming for that short ride. Son#2 screaming, me trying not to scream so I don't scare son#3. Husband trying to hold son#2 back as much as possible, also being scratched up.
We get home & send son#3 into the house while we grab a blanket in the backseat to wrap naked son#2 in while we try to rush him into the house without all the neighbors seeing the drama.

Once inside the house son#2 really ramped up chasing us through the house & attacking us.
That, was how a typical holiday day was spent for us. The days would take so long to come to an end. Time passed incredibly slowly. Torture.
Memorial day, Fourth of July, Easter--take your pick.

Today I missed son#2. And  I felt guilt at enjoying my food in peace. I couldn't sit down too much. I'm not used to sitting through the holiday days. I felt out of sorts. My other two sons entertaining themselves, just being boys--being themselves. No rush, no hurry. No worry of having to defend myself. I think it was a little taste of normalcy. Maybe a bigger bite of it than I was quite ready for. But I tried to let myself enjoy as much of it as possible. At the end of the day, being back home in my nest, I tried to really let go of the guilt that I did enjoy a day made for family---while a piece of my family was missing. I tried to slowly let myself soak it in the realization that this may be part of the new normal in my life. That calm & enjoyment of the day that how many people take for granted?
NEVER in all my time as a mother, have I had a Thanksgiving where I have eaten, sat down somewhere comfy, and taken a nap. I still haven't. But it's something I might be okay with doing one day. 

Baby Mine

It was your birthday not too long ago baby. I won't say I haven't had time to write this, I've just been thinking on my words.  Now here we are at exactly one year since our lives changed so dramatically.

Sometimes it's hard for a mommy to find all the right ways to say how she feels inside. God made us complicated creatures that have so much love, that we can't always tell you exactly what that means.
As moms we have so many people's happiness that we seem responsible for. Sometimes that's a heavy feeling to carry in a mommy heart. Especially when we can't fix everything for you or at the very least, make it better or easier for you. What do I tell you & your brothers every day before school? Make good choices. I want you all to choose things that will make you happy in the future, not just in the moment. Whether you're choosing friends, what classes to take or whether to stand & fight--I want those to be things you think about before you act. However brief it may be, it may save you from hurt in the long run.

I seem to make a lot of your decisions for you and it's difficult for me to always see the big picture.
I used to think I knew exactly where you'd be--with me. Forever.
I knew from the moment we knew we were going to be your parents, that you would be a boy. I just had this feeling of certainty. Funny enough, as you've grown into the teenager you are today, there have been a lot of moments of certainty I've had about you. Which is ironic since autism hardly ever contains certainty. But maybe that's why in the moments of floundering for answers for you, I have found myself truly scared. You came into this world on your own terms in such a hurry. You were born 30 minutes after we got to the hospital.  And since then, you've done almost everything, your way. You hardly let me baby you ever. So independent. Your own person.
You'd come snuggle but only when you wanted to & for only as long as you wanted.
 I was so worried the first time you stayed overnight from me. How would I let you know I'd be back? How would I let you know not to be scared? I remember just staring at you. Talking to you when you slept.  Trying to will you to understand this was for the best & not to be scared.

It's been quite a year. This time last year we celebrated your birthday in town. We saw you every week & we were about to embark on a scary journey together where giving up my child, would help you more than anything else could. Help us all. I still don't know if I understand it all, but we made it every step of this year together, by the grace of God.
You have taken the past 3 years and you've been so very brave baby. I know you've been scared, you've been sad and you've not understood all of what's been going on. But, through it all, your independence has helped you stay strong & endure. God has heard me beg many days & nights to hold you in His hand. Baby, you have so many people that pray for you, that wish good things for you & want what's best for you. I know we'll survive this stage of life. It's what we do. We're the toughest ones in the family. but don't tell your dad & brothers. We're the toughest because we have the softest hearts don't we? We feel things the deepest & yet we get back up and keep going forward.  You may be a daddy's boy, but we're a lot a like.

Baby, I don't know what is going to happen from here on out. I don't know if I can't make anything better for you anymore like I used to. But I know we'll just take it as it comes & survive.  It's just what we do.

What Were You Doing A Year Ago?

Do you even remember? I do. I was trying to address some valentines with Son#3 when Son#2 (who'd been home 5 months) was making all his noises very loudly. So we could hear, I thought I'd shut my door to give us some quiet--but Son#2 wasn't having any of that. He started trying to bust the door in. As I went to open it so he wouldn't break it, he busted in & a very large picture frame behind the door fell & glass went everywhere right by the door. I started pushing the door closed to keep Son#2 from walking in it & told Son#3 to get up on my bed until I could clean it up. Son#2 started busting the door hard with all his weight, so I left the room to draw him away from the door/glass & calm him. I started toward the kitchen & he took a swipe at my neck. I kept moving, hurrying, trying to get to the pantry & try to buy off his hunger with food. I never got to the pantry.


Son#2 chased me & chased me in circles around the kitchen table, around the living room---all the while I was trying to get my phone out & call Husband. I knew this was a bad episode & Son#2 was very wound up. He was SO angry that I'd dared to keep him from a room. Was he tired? Hungry? Constipated? It didn't matter. All that mattered was he wanted blood. He chased me &  every time he caught me he grabbed a hunk of flesh & twisted and held on for dear life.  When I could I tried to grab him behind the neck & push him down to the floor so he'd have to tire himself out to get back up & come after me, buying myself time. There was never enough time to pull my phone out AND call. I finally dialed 911-- and lost my phone, never getting to hit send. From the floor he grabbed my leg & took me down like a lion does his prey. He bit the calf of my leg and held his teeth in. I screamed & screamed, all the while trying to crawl away, kicking & screaming. When I got away I called Husband---another bite on the back of my bicep. More screaming, me pushing his face to make him let go of his bite/hold.

I won't go further. That's the jist of it--the whole 45 mins of it. The kids locked in separate rooms, hearing all the screaming & crying.  After Husband got home--and Son#2 calmed. I had blood everywhere, Son#2 had a black eye that was almost closed. So Feb 13, 2013 is the day. The day I knew it wasn't going to work with my baby living at home.

Now, here we are a year later. Son#2 is happier back in an an institutional type environment full time where he knows the boundaries & that he's outnumbered. We're going to court every few months, sharing custody with DHS & paying child support. There is a sense of relief, shared with a sense of loss. Every day. The sad part to me is we are all better off living apart. How is that part of the God's plan? I ask why, because there's no point. However, that is the hardest part to accept. But we have other children to raise that we are responsible for. And no one said life should or would be easy on this earth. One day at a time. And days like February 13th, are 30 minutes at a time.

Rock, Meet Hard Place

So many of you have kept up with our family's ups and downs on Facebook,and it's been easier to keep family AND friends updated at once. But I'd like to return to my blog & try writing more often.

As of today, October 14, 2013, Son#2 is still at Camelot (Rose Rock) where he's been since the first week in August.
We received a visit from DHS again in our home last Wednesday evening. They said they needed to meet a week before court. The new permanent case worker says the problems right now lie with OK Healthcare Authority & Rose Rock saying we aren't participating enough in son#2's therapy.

 We go to court next Tuesday but even if the judge recommends that we only have to go at the least, once a month to OKC, the OKHCAuthority, can still reject that. Even though they realize & understand that son#2's situation is one where it's permanent & not a rehab type situation.
They are son#2's insurance because he is disabled. When you are disabled, the state gives you their insurance. (which is good in our case because otherwise his meds would cost us around $2000 a month) So, since they are paying the bills, they have the final say in whether we are keeping involved enough in his treatment plan. They are trying to fit a square peg (that's us!) in a round hole.  And in my opinion, essentially forcing our hand.

The main problem with that is, it's impossible for us as a family to mentally, physically & financially to go every single week to OKC for "therapy". Been there & done that for a year. Still dealing with some costs from that. That my friends, puts us between a rock & a hard place. Meaning the state would try & discharge son#2 from where he's at--the rock. This is THE only place within the state that meets all his needs. To keep him there at Rose Rock/Camelot---we either go once a week, OR we sign over/give up parental rights--the hard place. To keep our son safe & in the only place in the state equipped for him, we may have to face the reality that we have to give up our rights so that he can stay there.

We've been grappling with this for awhile, knowing it was a real possibility. The guilt, the mixed feelings, our other children, the anger, the tears that are constantly at the surface ready to bubble over. Knowing something is easier physically on your family as a whole, in no one cancels out your emotions & feelings of your heart & what you WANT to do.
 There's so much we're already still working through with knowing we are settling into a routine without him here & that he won't be back here for the upcoming holidays. How do a mother & father sit down & logically talk out their feelings on giving up parental rights to their child when everything you did from the time you were pregnant, was to protect them & keep them safe?

We are trying to make arrangements to get down to OKC very, very soon so it buys son#2 some time at RRock & gets the insurance off our backs. Ideally, I'd go myself during the day once a month or so. But it's tricky. Nothing is ever as simple as just saying it. Car issues still in the picture for us & just timing. Also, fall break is this week. Anyway, all that to say of course we'd love your continued prayers for son#2 and his safety/happiness& contentment. But we also ask for some prayers for us, that God may give us wisdom to know what is right for our family. To help a mothers heart not break in two, no matter what the outcome.