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.