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?

Tuesday, January 20, 2015

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???




Wednesday, January 07, 2015

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!

Wednesday, December 17, 2014

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.

Thursday, November 27, 2014

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.