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.

The Next Step

Hello friends & family. It's been awhile since I've
given you an update on Carson's situation & plight to get him what
he needs. I will try to explain what's been going on, but bear with me. I've been putting this off
for a month or so. All this information has taken me months to collect & it's been in small bits & pieces around from different people. And to be honest, it's gut wrenching to even sit here & type it all out for you. We are in a very sensitive place right now sort of riddled with anxiety off & on as our minds fade in and out of distraction.
But it is easier to explain it one time & with a fluid train of thought. Also, if it seems I'm being vague--I am.
For reasons of protection that could come back on us. I'm trying to tread carefully since we are new to this situation & want to protect ourselves. Thank you for your patience as we've tried to explain blindly or politely changed the subject.

Tomorrow is D-day for us. Tomorrow, July 30th, 2013 is the day we are
supposed to pick Carson up. As in, he is supposed to come home.
Contrary to all that we hear,from people in positions to know or experts in this field, our research with actual people tells us that the special needs petition isn't really a form to fill out or a waiting list
to be listed on. It's us the parent, petitioning the court to place Carson in a facility on a full-time basis. To do this, we refuse to pick him up tomorrow.
The fact that we will refuse to pick him up, begins the process. The person we are in contact with, tells us this is the only way. Which is such a shame.
As much as I hate to say this, it will technically be us, abandoning Carson by our refusal to come get him.
The word hurts me so if you've used it around me lately & I've flinched, you can understand why.
I'll try to explain a little of why it has to be done this way.

In Oklahoma in 1964, Hissom Memorial Center was donated in Sand Springs for a home/institution for those with mental disabilities. They housed over 1200 patients. In the 80's a group called Homeward Bound brought a suit against the center in hopes of closing it down and placing patients into communities and integrating them into society as much as possible, contending it was more humane and much cheaper than institutionalization. Hissom closed in 1987. As in any establishment, I concede there were probably many issues that were wrong with Hissom & at the same time, many people/children that it helped benefit.
After it's closing, legislation was passed to prevent any child in Oklahoma from being permanently institutionalized. What this means for Carson is that until he's 18 yrs old, he would have to go to places like Rose Rock, and be there MAYBE a year, then checked out for 6 months & re-admitted when there was space. All the while, with the staff knowing, he isn't "cured" of his aggressive behavior & that most kids like Carson are just starting as they enter puberty.

What happens with the special needs petition is, we will call Shadow Mtn tomorrow morning---and by we I mean Matt--to let them know we will NOT be picking him up. Then they may possibly send a letter threatening us to pick him up or they'll call the police. We would then send THEM a letter detailing why we don't feel it's safe for our other children to pick Carson up & return him home. However long it takes DHS to become involved, they will be contacted & whenever they get to it, Carson will be moved to a new facility they've built in Tulsa for kids that are wards of the state. We've heard it's nice & he will be taken care of. Then we will go to court (hopefully avoiding arrest--God is good.) and explain why we can no longer have Carson at home for his safety or ours. They assign us to a DHS person & meanwhile Carson is in DHS custody, along with having a guardian ad litem--whom we already know God has chosen. Sources say, we do not need a lawyer for this, it's pretty informal, but you obviously CAN have one if you wish. We called one lawyer but he claimed to have invented the special needs petition & wanted a $2500 retainer to tell us anything. We'll be going this alone. As scary as it all is, our story has made it's way around Tulsa. We choose to trust & believe God has this one.

After a few more court dates, Carson will most likely return to Rose Rock in OKCity. And we will still retain visitation but will NOT have to attend weekly therapy sessions etc. Our rights as parents are still there but the burden of  We will then EVERY 30 DAYS, return to court, to have his papers stamped with "discharged" and then we will be asked if anything has changed on our part--we say no. Then his papers are immediately re-stamped with "re-admitted". This is how the state gets around it's own law it's too lazy to change, which keeps Carson from remaining "permanently" in an institution. This will continue until he's 18 yrs old,  we find a place in another state perhaps, or until I pester enough state officials to move money around & place him out of state.

As you can see Carson still needs prayers, we are more at peace but it's nerve wracking. The past months doing Tuesday therapies and playing this game with the therapist is more than I can get into right now but needless to say it was draining. Her asking if we're ready for him to come home & if we have all our papers for the special needs petition filled out. All the while she knows what that entails & so do we. It's like a dance that I am NOT good at. Fakeness & lying are two things I really despise. Anyway, please continue the encouragement & prayers for our entire family while we go through this difficult time.




 

My Three Sons

Dear Boys~

One day you'll be reading this as grown men, and I felt I should let you in on the reality of how a day in the life of your mother feels.
Today, in this time of your life, you think I play games and watch T.V. all day. As much as I'd like this to be true, a lady of leisure I'm not.
I just had a very trying few days lately as your mother and felt it might help your future selves and your children to understand me better if I write it all down now.

Jackson, I really worry about your adjusting to high school. You still seem so immature to me, yet your deep voice & leg hair suggest different. I know, you don't want to talk about that.
You tell me you want to live with me forever & won't even contemplate spending the night with someone else, but you talk to me with such rudeness sometimes. I realize no matter how much autism there is in your make up, there is just as much "normal teenager" in there as well.

I worry about kids offering you drugs or making fun of you and you not knowing it. I worry about you not feeling the need for friends, but you tell me that you like doing what you want by yourself. I'm happy you & Noah are talking computer games & starting to want to "hang out". Who knew it'd be 14 years before you wanted a play date? I love how when you hug me or give me a kiss, you have to bend down to do it. My big boy. Your daddy always asks me don't I want you all to become men one day. I always look at him like he's grown three heads--Umm NO I DON'T! Men have their own lives that moms aren't privy to most of the time. Who will help you? Who will see the situation UN-literally & guide you through it? Who else will call me Julie like you do?

It's one thing to leave my own life up to God. To realize my part in His plan and allow my control over my life to be usurped. But I carried YOU in my body. I prayed and talked to you before you ever left my body. You were all I had when Daddy & I started out. Just you and me alone all day waiting for him to come home. I've been there when no one else was. I talked you out of meltdowns, snapped at people who stared too long, and I explained your behavior to others in a way to help them understand you better. I helped set your course in the way I felt God might want it to be. But to have you grow up, means I have to give up steering your course and turn it over to God. That is much, much more difficult for me than giving my own life over to Him. To pray from afar? I have to let you go little by little and it's hard for a mommy. I guess that's better than ripping the band-aid off all at once though.

That band-aid brings me to you Carson. You are my baby that I brought home & I wanted ten more right then. You are so perfect in my eyes. Your laughing spirit makes me so happy your middle name is Isaac. This week I've been working on school things here for when you come home from camp. And it's not been easy son. I'm finding answers I didn't want, nothing is as easy as I hoped it would be if I was organized and I just want to hurry up and have you here. All my chickies in the nest. Daddy is there at camp with you right now. He said you saw him and were all smiles.
I know you realize you're coming home this weekend. I'm not even stressed like usual. I'm just waiting patiently for you to get here. I need you to be where I can keep you from scraping your knees up constantly. I need to be the one who puts medicine on your owies and who knows what your cry means you need. I hope you learned things while you were at camp. I pray when you get back things are better for you & for us as a family.
We love you so much CarCar.

So many things will change here Carson, but I'm ready. I'm ready for God to give me the reigns back. I've learned how to get to the peace that passes understanding. You being gone for a year, you being hurt either by someone else or their stupidity, it was a direct message from God that I have no control over this. He has this. Your mommy is a realist, and she hardly does anything without putting an efficient twist on it. If I had no control, than 99% of the time I knew this was ALL God's plan. That even if you were hurt when I had left you somewhere, God had plans for that event. Godly things would come of it. And I would never, ever in my mommy mind know what that could be, so I left the big stuff up to Him and concentrated on what He asked of me. To love Him with all my heart, mind, soul and spirit.

Carson, people have asked me and my friends all year, "How is Julie this calm?"
I was never happy you were away. But over the years I've learned to be happy wherever I am. It's all relative. On the side of a highway, you find the bad that didn't happen. When your child was hurt, you find relief in that someone found it and reported it.
I don't have all the answers Carson, and you and I will butt heads when you come home, I'm sure of it. There will be hard days, I'm sure. Days we both cry. You, Daddy & I have many, many years together still. But that's my job. God asked me to be in charge of helping you be the best you that you can be. So I want you to know, that I'm on it. I will NOT fail you. And when I can't be there, God has you. I'm so excited that while things won't be much different with you home than before, that God says it's time. So that tells me, there are plans to prosper you my baby.

Grayson Matthew--boy were you a surprise. And you continue to be one. Who knew that God had been holding you back waiting all those years to give you to our family when you were needed the most?
Papa died suddenly the month before you were born. You were such a gift from God. Nana cried a lot when she held you at first. She was so sad that Papa would never know you. But I told her that Papa met you before any of us did. You are such a ball of happy energy that never stops wondering and trying to please us all. Your spirit was sent from God to our family.
You're in your first week of first grade when I'm writing this letter. New school, new teacher and getting ready to share your bedroom with Carson.
You two have always been buddies. Since you were born Carson has stuck pretty close to you. He was always & still is, so very easy with you. Your prayers for him every night to keep him safe are like music to my soul. Your brothers are both lucky to have you. One day they'll need you ,but I know right now they give you a hard time. Just know that they love you and how different you are from them and how you are always so loving with them.

I see all that you will have to know for school and your Daddy & I see how different of a world this will be for us. Right now I worry that you don't know anyone at your new school & at church you only have one or two friends. You love people so much that I hate to see you left out or struggling for friends to include you. I love the little man you are right now. You started out so shy and wouldn't talk and now you're volunteering to lead prayers in your Bible class! You're so smart Gray, and your mind sees things as being so easy. You're eager to learn and we know you'll one day want to play sports. We've never been in that parenting world yet of soccer moms & dads but we know you will open new doors to our family with your smile and personality that people love.
One day I would bet we have a house full of your friends & while I'm feeding them huge amounts of food, you'll be including your brothers in the fun. Your heart is so tender & so big and full of love. You light up the room son, and one day I know all my worries will be for nothing and you'll be king of all the playgrounds! It's hard to imagine that as you start first grade, Jack is starting his freshman year in high school. Or that Jackson will be 18 yrs old in 4 years. That Carson is taller than me and weighs what my drivers license says I do.

The last few days were tough, but the twinkle in your eyes, all of your big, brown, mommy eyes, give me the strength to get back up and do the whole mommy thing again tomorrow. Even when I have a headache, or you're sassy, annoying or loud, I still always want to be your mommy. So remember that forever when you're reading this my three sons.

To Do List

My "To DO List" is getting longer instead of shorter.
I keep thinking of things I need to do before son#2 comes home for good. Or even before his next visit on Aug 31.

I ordered the new seat belt locks for both cars--$25 on Amazon.
http://www.amazon.com/Buckle-Guard-Seat-Safety-Black/dp/B002XUYF9C/ref=pd_bxgy_ba_img_c

We'll probably order the fridge lock after payday. It was rated rather high, especially by people with Alzheimers keeping their significant other out of the fridge--sounds promising.

I'm cleaning out a closet for son#2 today. This house has the smallest closets I've ever seen and there's no way he can share a closet with son#3. We had bigger ones in college in our first apartment!
I need to get a 3 wide drawer rolling cart for his clothes & several things of hangers. We only have one dresser in this house--ours. Long story short, it has saved floor space for kids to have more room to play--hence the Rubbermaid drawers in the closet.

I have door knobs that we've taken off & turned around so I need to get those changed back. I really need to find a carpenter & get a quote ASAP on building a small pantry for us so that it's done before September 26th.

I have a million phone calls of people to notify, school papers to fill out for transferring him back etc.
I've made doctor appointments for the 27th already to transfer handling of meds.

I need a new trashcan that has a lid that swings but mostly stays shut so I can leave it in the house & not have to put it in the garage as well. I could use a new can opener so that lids/cans don't have the sharp edge that have caused calls to 911 in the past with son#2.

I'll probably need some more Rubbermaid that fits under the beds for toy storage when we unbunk them this weekend. (Lord, a small prayer that our backs hold out during that.)
I need to either find new, happy homes for all my plants or see if realistically they are safe on top of the fridge.
I've really enjoyed having plants again, but son#2 loves to tear the leaves off and eat the dirt.

I probably need to let our not so loving landlord know that the gate on the fence is sagging and since son#2 is a flight risk, so is the gate. And I need to let her know there is something wrong with the garage door--we have to manually make it go up & down.

While all this sounds overwhelming (and that's not even buying a truck load of diapers/wipes & gloves) I am trying in the midst of all this prep, to take into consideration how sons#1 and #3 start school in two days. Getting their supplies ready, make sure they have enough clothes/shoes and talking them each down from nervousness as they each start a brand new school.

Signed--
Looking Forward to Finding My New Normal ASAP

Progress

prog·ress

noun
1.
a movement toward a goal or to a further or higher stage: the progress of a student toward a degree.
2.
developmental activity in science, technology, etc., especially with reference to the commercial opportunities created thereby or to the promotion of the material well-being of the public through the goods, techniques, or facilities created.
3.
advancement in general.
4.
growth or development; continuous improvement: He shows progress in his muscular coordination.
5.
the development of an individual or society in a direction considered more beneficial than and superior to the previous level.

We're gonna go with definition 5 today folks.
Son#2 *has* made some progress since being at Camelot. He can keep his clothes on, the majority of the time. He can put his own shoes on himself. He will use a fork or utensil while eating. His outbursts are less frequent. He's getting better at waiting, unless it involves food. And while son#2 hasn't mastered his anger, the higher powers at Camelot are talking discharge. He will have been there ONE YEAR on September 26th.

The "powers that be" (PTB) will be doing his annual review on that date, and we've been given a heads up by Lolly the therapist that they probably can't find a reason to keep him. We were told if we start to come to therapy once a week, (4 hr total round trip) OR take him on overnight passes more often, we might be able to draw out the time he can stay. Hubby & I feel we logistically & financially we can't play the game that way.

There have been changes at Camelot that make it difficult for me to feel as comfortable with him being there as well. The director is now in a different job & I truly felt she had the kids best interest at heart. While I don't know the new director & can't question her motives, I feel less comfortable than I did.
Toya, son#2's main, favorite of all people, staff---was let go. She was put on leave after a director of a different cottage observed her with son#2 and felt she was being too rough. I wasn't there but can tell you, I'm sure that wasn't the case. Toya has been out with our family on outings & for meals, I've always felt she was helping son#2 & forever patient with him. Not to mention the fact that she has a mentally challenged sister that is an adult now that she helped raise.
Camelot found her not-guilty, but because of this person's wording in her report, a complaint went to OCA. (Oklahoma Child Advocacy) So now, Toya has been on un-paid leave since first weeks of July, and she recently got a letter terminating her from Camelot. Which is very disappointing to me since in December when son#2 had such horrific bruising & OCA was called in, they couldn't pin down who was negligent or who caused the bruising so those workers were allowed to stay on.

I called OCA myself & left messages saying I'd testify to how I felt Toya did with son#2. And I sent her a character letter, notarized and ready to go. Poor thing needs to clear her name to still work in this field, even if she can't get back at Camelot. We'll see how all that goes, but son#2 has adjusted really well to his new staff and seems to be doing okay. So that's a relief to me throughout all that.

Having son#2 home sounds divine in some respects & scares me in others. His anger still isn't under control completely. There are many things here that need to be addressed before he's here full time & the time clock is ON! One of which is the small problem of the fridge & pantry. And then there's not enough bedrooms for everyone to have their own. I may start a change jar to save for a house.

Life is moving on, school starts the 23rd of August here. Son#1 is a freshman, son#3 is starting at a school by our house and then it closes next year. I tried to get him transferred to one that will stay open so he doesn't have to keep switching, but the planets didn't align on that for me.

All, in all things will be changing for us. Son#2 we are 95% sure will be coming home at the end of Sept, early October. Progress has been made, we've all learned a lot and God had a plan. I love the idea of less bruises on son#2 and being able to see what he needs. But with that comes so many things I can't control. His anger is one. There's all the walks he's used to, having to stop the other kids schedule or what I'm doing to take him for a walk to calm him down is going to be new. Get him re-enrolled in school here, maybe find a place he can go half days after school. Where he'll have time alone in this house, I don't know. Keeping him from eating cleaners and putting all my knives and soap in the kitchen away, will be a step backward in adjustments. Everything locked back up, will undoubtedly drive us mad at the beginning, but this *is* progress. I'm not in on it yet, but there's plan because I have faith someone bigger than me knows what's going on.

Ten Things Wednesday

Ten Things Wednesday, Yeah WEDNESDAY--I'm thankful & it doesn't matter what day it is that I get around to writing about it.


1. MY BABY WILL BE HOME IN TWO DAYS!!!!!! Sure other stuff can happen to prevent that, *cough/Satan/cough* BUT, I chose to think positive & have faith and BELIEVE God wants it & with our faith, it will be truth.

2. I'm so thankful for air conditioning. And that includes borrowed window units.
It makes me a nicer person too.

3. Some people don't have good bus situations for their school kids, but we've been really lucky to have not good, but GREAT bus people. Some have moved, some have passed on. But we still have good ones here & they always go above & beyond. This time they stepped up letting us borrow a seat belt lock for son#2 this weekend.

4. Thank you God for terrific friends, family & church family. Listening to me whine, stress & flip-out. Always there to talk me off the ledge & help problem solve. And without all of our friends, we would never have made it through this 9 months son#2's been away.

5.I'm thankful for my boys---without them I don't think I'd smile & laugh as much. Sure three kids is more of a handful than one. But I'd rather have more the laughs & memories. They are so hilarious & make me crazy all at the same time. Life's stressful and to have them distracting me & keeping me busy helps keep me up in the happy, rather than down in the dumps.

6. I had a friend who's young 3 yr old daughter was accidently hit in the head with a golf club last week. She had surgery & has recovered amazingly well! A true miracle. It was such a scary situation to hear about & see. I'm truly very thankful that God had His hand on her & the doctors.

7. This summer has been so different already from past summers for me. It is NOT my favorite time of year. I detest it. It depresses me. Seriously.
But this year, there's a little less stress, no summer school so we set our own schedule & we have an extra car so the kids & I aren't home bound all day.

8. I have reason to also give thanks that son#1 is STILL eating homemade grilled cheese & loving it! He is saving me some money & making some other small concessions on yogurt. Baby steps---but the first baby steps since he was about 6yrs old. I'll take it.

9. We've had two elders here in our home congregation that have health scares recently. I'm excited to see them doing better & better with time and prayers. The power of prayer & an earnest heart is so wonderful.

10. Mothers are a strong breed. Mine has great endurance & when we need her, she comes to the rescue.

Jesus Take The Wheel

Best to just jump in and rip the band-aid off.
It wasn't good people. I'll just shoot straight with ya. I wasn't stressed about son#2 coming home for a visit again, I was stressed trying to get all of the end of the school year crapola done. (Yes mom, "crapola". It rhymes with crayola.)
In fact, I was SO very happy son#2 was coming. I had big plans. I cooked all day Thursday and made his favorite casserole, veges and cookies. I had dinner ready for when we'd get home Friday. I couldn't even stop smiling if I'd wanted to Thursday.
Friday, well, first God blessed us with clouds on the trip up because it was already humid and 80 degrees. Therapy was at 10am and son#2 was looking SO good. We were all packed up, checked out around 11am, had the big bag of his meds and were on our way. We thought we'd stop at the halfway point on the way back in Stroud at their McDonalds for lunch to eat & let son#2 stretch his legs. I had *just* taken a cute picture of all my chickies in the backseat and sent it to my friends saying that my heart was singing, when "it" happened.
We blew a tire just after getting on I-35 again. The one tire that was old and original.(The Sheriff said the tire nuts were rusted on.) We had heard a "POP" sound like something hit the back end of the car but cars & trucks were passing us so fast, we assumed it was a dirt clod or something. (Apparently it was a plug in the tire and it had popped out & the tire lost air pretty fast.) As soon as we pulled over, the clouds disappeared. Of course.

I called for the auto-club, and warned the police where we were on the highway and that we had two Autistic kids in the car--3 kids total. Does that seem unwarranted to you? The dispatcher thought so & let me know they did not have the man-power to have someone come & wait with us while we were changing a flat tire. I said okay, I was just giving you a warning, and politely hung up.

BRIGHT SIDE NOTE: I have been told, the Oklahoma Highway Patrol was not happy with the way they handled the last incident we were involved in bringing son#2 back last time. SO they will all be undergoing training in how to deal with Autistic persons. I cannot tell you how happy I am to think we went through all that horrible mess, to help someone else later down the road so maybe their experience, is bettered in some way.)

I think Hubby had joked with a friend just this week that we were going to try and get the police headcount down from 12 to 2 this time around. We are nothing if not truthful.
Two uniformed officers came. One was a Sheriff & stopped to check on us after stopping a teeny, tiny, old lady in a Cadillac just to make sure she wasn't a teenager stealing the vehicle. And the other came for back up, all before the auto club guy showed. The AAA guy was impressed that the police came (it seriously IS not a good highway to change a tire on yourself and they told us this AGAIN.) and not just one but TWO.
After I had made these initial phone calls, I called Camelot immediately to let Lolly the therapist know what was going on. Just in case someone had to come get son#2. Turns out we'd passed Toya, our son's staff member/miracle worker, in the parking lot without seeing her. She heard what was going & drove out to help keep son#2 cool & calm. It was SO nice of her on her day off. She loves my baby so I love her.

After we were on our doughnut, (Which son#3 was *dying* to see for himself--envisioning a real doughnut--he is indeed my child.)we followed Toya to a nearby Wal-Mart to get a real tire. We weren't taking three kids home with a back spare for 2 hrs.
Turns out that first (yes, FIRST) WM, didn't have a tire & lube bay. We headed to the next one (#2), again following Toya, and it was just a small Wal-Mart Neighborhood Market. Fail!
We did about 20 mins more of driving, with hungry, very tired, hot kids in the backseat, and found ANOTHER WM(#3). Toya and I go in, while Hubby took the car info down about the tire. I had promised the kids McDonalds, and it turns out this specific WM, only had Subway. Damn those healthy buggers! Son#1 had a meltdown, son#2 quickly took a lady in the next booth's bun off her sandwich and scared her half-to-death. Luckily she was good-natured about it all. And about the time Toya & I started to get it under control, Hubby comes back to say, that the automotive dept computer *says* there's a tire there to fit our car, but they can't find it.
So we packed up kiddos and took off to ANOTHER WM.
Toya again leading the parade. (And adults still having not eaten or drank much yet.) But at least we're keeping son#2's demon's at bay.

2pm-ish
It's 90 degrees by now. We get to our fourth WM, and yes they have the tire, and YES they have a McDonalds. We sent poor Toya back off into her own life to enjoy her weekend off. God bless her with something. She deserved it. Second lunch for kids! Yes, we're hobbits. While Hubby was off dealing with the car/tire issue, I got the kids eating and some very nice lady came & asked me if I needed help. She looked so concerned for me. God bless her but there was nothing she could do at this stage unless she had a bag full of money and big ol' chill pill for mama bear!
We walked around in that WM for 2 hrs. Son#2 was over-stimulated and finding strange things like ladders he'd take down that tickled his fancy and the other two with giant cases of the "Gimme's".
I think we spent the majority of our time on the fan aisle. It was the warmest WM I've been inside in awhile. Of course.
(Oh and a big fat thank you, to the goobers that left a used Big Gulp on a shelf near the fans complete with nasty dried out, opened package of Whoppers. You made son#2's day & that hunger I was starting to feel went bye-bye. And whatever idiot boy came up with putting all the S'more makings like Hershey bars back by automotive---THANK YOU TOO! I owe ya big time. I thought that'd be a safe part of the store since the other food half was definitely off limits. But NOoooooooo! Thanks for that.)

We also realized during these trips to different Wal-Marts that our battery cables needed replaced because it's not a great connection. We lost the clock and the cigarette lighter. Which means no charger for the dvd player or phones or Tom-Tom. Of course.

4pm
We made a decision & called Camelot. We were going to take son#2 back to camp. There was no way in our mind that he'd get in a hot car, in prime Memorial Day weekend traffic and drive 2 hrs back home with us--eat, shower & go to bed--turning around and leaving the house Saturday by 8am again. It was too much. We had wasted our day & never left the city. It was so, utterly disappointing. I wanted to cry, puke and slap somebody all at once. I would never have been as sane as I was through all of it (and I'm pretty sure Hubby questions that.) if I didn't have my Prayer Warrior Chicks. They were on it. We were texting & they were lifting me up in prayer when I just didn't have the energy myself. God is good. It was such a long, hot day. It probably sounds pretty tame in comparison to the other incident, but you've never spent a day chasing after my three sons in a Wal-Mart. And I bet if I let you, you wouldn't or couldn't do it again. It was safe & air-conditioned.

4:30pm
We took son#2 back to camp. He was fine with us leaving then. I know he was so tired. He kept yawning & he's the Energizer bunny. I told Lolly when I handed back all his meds I'd been tempted to take the whole bag myself to calm me down. She laughed. I didn't.
The traffic was not nearly as bad as I thought it'd be on the way back to Tulsa, but the wind was causing some trucks trouble with keeping on the road. I was so jumpy and stressed with any bump or noise the car made. I think I drove my husband batty. (**see below**)

7pm
I am happy to say we were SAFELY home. Son#3 kept yipping happily when he saw things he recognized,that we "were back in Oklahoma!" and how we needed to take the subway the next time we go to see Carson. Hubby and I agreed it'd be smart to dig a tunnel for a train. I might do that this summer.
I wish I could tell you our story ended her. It didn't.
We ordered a pizza when we got home & seriously I can't even explain the drama. They called me back immediately asking for the address to confirm it was for delivery. It would be a 35-45 min wait. Sigh! But when it'd been an hour and I could peel myself off the couch I called back...

Me: "Where is our pizza South Broken Arrow Papa Johns?????"
PJ: "Umm well no one put delivery on it, it's been sitting here."
ME: "What's your name?"
PJ: "Drew."
Me: "Well, listen Drew. The reason I know this mess up is your fault is because you called me back to ASK me what address for delivery. SO, I'd like a newly baked HOT pizza that's free. Do you think you can do that Drew?"
PJ: /pause "Umm yeah I think we can. We will. I'll do that."
Me: "Thank you. I'll tell ya Drew, I just spent a very bad day in a city I didn't want to be stuck in ever again, and it's still a pretty bad day. I haven't eaten a bite of food all day and it's now 8pm. I want you to know I know it's not YOUR fault Drew but I'm yelling at you just the same. Okay?"
PJ: "Yeah okay. I'm sorry."
Me: "Thank you Drew. Now go make me a pizza."

For those of you who can't picture ME saying that & actually standing up for myself---you can bet your sweet bippy I DID say all that--100% true! It was NOT the day to mess with me. And this location had done this SAME thing to us the LAST time we got back from the highway incident with son#2. Of course.

9pm
Camelot called. After we left & son#2 was at dinner he got upset and had to be put in a hold. He knew he was supposed to get to go. But WE knew he'd never have made it for 2 more hrs in the car. It may not make sense to you, but I beg you not to judge that. My big mama heart wanted him home. I wanted to squeeze him & love on him all night long. But the day would have gotten worse. And we had two kids in the car besides him that were exhausted & desperate to get home too. They were sad too. Son#3 broke my heart writing me a note last night that I should never leave son#2 at camp again.

Camelot called again today. Son#2 bit a nurse & they had to pry his teeth off her arm. He's mad. Not the usual staff--holiday weekend. And he's not at home. He knows. I know. My heart isn't singing anymore. It's sad. Very sad. I know I've written a lot & you wanna stop reading. I know I've said this before, but it warrants repeating.

Autism can warrant pity or garner sympathy or even support. But it's not pretty day in and day out. It's the screaming child at the supermarket/McDonalds, that didn't get their way or you didn't do it the same way for. It's the child no one understands or who people stare at or find uncomfortable to be around. And difficult to even like all the time. Some people feel uncomfortable with what they can't fix. They may like you, but they just don't understand. However, it is what it is. And knowledge is power which is why I let you in on all the ins/outs sometimes. It sure isn't because I like typing it all out to relive it. Knowledge can change behavior and that excites me. I don't feel I can change the world but I can help change mine. Sometimes.

**For you church people I kept thinking of the song about "The winds and the waves shall obey Thy will, peace be still, peace be still. Whether the wrath of the storm tossed sea or demons or men or whatever it be, no water can swallow the ship where lies the Master of ocean and earth and sky. They all shall sweetly obey Thy will, peace be still, peace be still. They all shall sweetly obey Thy will, peace, peace be still."