Lots of changes

I really need to blog more often. So much has happened. The week after the last visit with Levi’s team, they called and said that his hyper sexuality had worsened even more and would have to be moved as soon as possible. First, we thought it would be a place in Missouri, but he was too young. Then he was accepted at a place in Fayetteville.

Last Sunday, I picked him up and kept him overnight. Then brought him to the new place on Monday morning. I liked this place better. The staff was friendlier, the building seems more open and welcoming.

I had typed up a several page paper about Levi and all his quirks. A History of his life. Apparently, they have never had a parent do that before. I try to do as much as I can to help them.

Things were fine until Saturday. Levi had an altercation and broke both bones in the bottom of his right arm. The bones are so badly broken that they could not be set. He will have to have surgery.

Right now he has a splint and a sling to keep his arm stationary. Tomorrow we will go see the Orthopedic Surgeon. Hopefully they will do the surgery tomorrow.

I’m staying here, in Fayetteville for the time being. He needs me. Even though I am not in the same building with him, he knows I am here. He sat in my lap today and let me hold him. He cried, a little. He never cries much.

He’s scared right now, and hurting. Which makes for a dangerous combination for him. Luckily, the medicine is making him sleep quite a bit. That’s exactly what he needs right now.

I’ll know more tomorrow. As always, I remain ever hopeful. We will find our way through this dark abyss.

Still Struggling

Today mom and I went to Little Rock to meet with Levi’s team. This, after finding out last night he has been on suicide watch. Apparently, they found him, naked, in the bathroom, in the middle of the night, with a piece of metal. Not a good combination.

The meeting was short. They are less concerned about the suicidal thoughts than the sexual acting out. They are watching closely, of course. But mainly consider them a bid for attention. The sexual acting out is a new thing. It started during his last short term stay. It’s become bad enough that it’s traumatizing to some of the other kiddos,  he has another 30 days to stop it. If he can’t, they will have to place him somewhere else. Both options are in different states.

They did agree to have another Dr come talk to him and see if he can get to the bottom of this new behavior. Also get started on the Spectrum testing.
We got to see Levi today, my heart still melts when I look at him. It also breaks because he has so many issues to deal with. He has been there over a month now and is still on precautions. Which means no day passes or weekends home.
I worry, I cry, I pray, I talk to mom, I hope. I dream of a day when we will better understand mental illness.

Constant Chaos

Levi spent a week in the behavioral hospital this time. I picked him up Wednesday afternoon. He looked great! His eyes were sparkling, he was smiling, he ran to greet me with an enormous hug. It was fabulous! I had MY baby back. The drive home was fine. Even being home was alright. He showered and ate, we snuggled, he snuggled grandma, bedtime was fine as well.

Then he had a nigh-terror. I wasn’t there. I was taking Trevor to work. But, when I got home, mom was in the room with him. It was bad. She told me she had to literally lay on him to get him to calm down. (Full body pressure, we use it a lot) The rest of the night was not great.

It was that damn new Poltergeist commercial. I hate commercials. He sees it, and become the kid that gets jerked up the stairs. Only, he goes a step further and gets dragged down into the pits of hell, where he has to watch his family be murdered. Now tell me, could YOU sleep with that in your head? I know I couldn’t. He has dreams like this constantly. For years he has.

Anyway, I took him to his day program the next morning and we had a session with his therapist. It started ok. We ended up in the quiet room with me restraining him and trying desperately not to get head butted in the face. All because he made a mistake in something he was drawing, with a pencil.

He screamed, and raged, and cussed, and threatened to kill me. For over an hour. He was back in the behavioral hospital before noon that day. He didn’t even make it 24 hours.

The Dr’s there are great, the whole staff is. Finally, finally I had a therapist ask if I had ever considered that he might be on the spectrum. Yes!!!! Since he was 2! I have asked, and fought, and been laughed at numerous times because he is too damn SMART. Hello asshats, have you ever heard of Temple Grandin?? She is a genius, hands down.

So, the upshot of this mini rant is that we are again being referred for testing. This time, I will make sure the test actually gets done.

Right now I am simply at a loss. I have done all I know to do for this child. He feels safe in the hospital. All those locked doors, he knows the scary things can’t get to him there. My question is, will we be able ti fix him enough that he feels safe at home? I pray that we can.

I feel better this morning. His Dr and I talked for almost an hour. His is firmly on the same page with me. We’re going to try yet another new medication, and hope. There’s always hope.

And so it begins.

Today is Friday, and it’s a rainy, dreary day. It fits my mood perfectly. Wednesday, I received a call from Levis therapist. He was raging and had needed to be restrained several times, she asked if I could come pick him up. I was at work, so it took a bit of time to get things situated so I could leave. When I parked, I could hear Levi screaming. I closed my eyes and offered up a quick prayer. See, I knew the day would end with him being admitted back into acute care. I went into the building, and Levi was in the quiet room, being restrained, and raging. He is quite inventive with his words. Within just a few minutes of my arrival, things were being put into motion, trying to find him a bed.

I simply do not have the words to explain what it feels like to give the go ahead to have your child sent to a mental hospital. Heart wrenching pain, it invades every fiber of your soul. Yet, there is also a sense of relief that sneaks in there as well. Which makes you feel guilty. I love him, I fear him, I worry for him. He’s only 7, and he wants to die. The only place he feels safe is the hospital.

As soon as he knew we were making arrangements to get him back into the hospital, he calmed down. He was relieved, dare I say happy? I took him home and he helped me pack his things. We picked up Grandma and made the drive. He was calm the entire trip, it takes about an hour. He didn’t start acting up until we got there and had to wait for all the paperwork to be done.

I talked to him twice yesterday. His voice, I never hear this voice when he’s home. Happy, almost carefree. It’s heartbreaking.

Mom and I talked during the trip back home. I posed this question, ” What if my son is only able to function in a residential program?” Horrifying to consider, this is my baby. The child that doesn’t want me out of his sight.

The locked doors of the hospital comfort him. The structured routine. Knowing what will happen at any given moment of the day. I simply can’t provide that. I try to do the structure as best I can. Not easy with two other kiddos at home.

I’m scared. He will go from this acute stay to the residential program. Which is at least 4 months. After that, I have no idea what we will do. His day program will no longer exist. I have yet to find another program that is even close to having what he needs.

Change.

I’ve been quiet for a while on here. Not because things have been great, because they haven’t, I’m not sure they ever really will be.

Mostly I’m quiet because I’m so disheartened. Levi is a great kid, I love him with everything in me. But, Levi is not easy, ever. And I’m not perfect, ever. I get mad and say mean things, or yell, or try to ignore him. It doesn’t help.

We have been rocking on the best we can. He has been in the upswing of a manic cycle for several weeks. Lots of aggression and anger. He is so scared, of everything right now. He woke up the other night & I was in the bathroom, it was the middle of the night. He went and woke Shiloh up, because he was convinced I had been murdered. Can you imagine having to live with thoughts like that everyday? I can’t. My heart breaks for him, for all of us.

Trying to read Levi, and see his patterns is like beating your head against a brick wall. I seldom know what sets him off. One minute he’s sitting there drawing, calm as can be. The next thing you know he is raging like a wild man. I’m left sitting there wondering wtf just happened.

He’s only 7, and he’s really not that big. But, it’s all Mom and I can do to handle him when he gets like this. Superhuman strength is what mom says. It’s true. I don’t even want to try and imagine how we will manage when he gets older, and bigger.

Alright, here’s the change part. I had our  weekly meeting with his therapist yesterday. She told me the Day Treatment program is closing at the end of the school year. The upshot is, they don’t get enough funding because the idiots in charge refuse to advertise in this area. I’ve lived here since 1992 and didn’t know they existed until July of last year.

I’m terrified. Levi is nowhere near ready to go back into a regular school system. And we have no other programs like this in the area. I asked Lisa what she recommended. Her answer scared me even more. It’s not that she hadn’t put a lot of thought into the answer. Apparently she had spent a good portion of the prior weekend thinking about Levi. She loves him too.

Residential Care. A program that lasts between six and eighteen months. The closest place is a hour and a half away from me.

I want to scream, and gnash my teeth, and pull my hair, maybe throw myself on the floor and kick my feet. The fear is overwhelming. That long without my child. Placing him in the care of strangers, not able to see him, or talk to him every single day. I’m not sure I can do it.

But, I know I have to. For him. If he is to ever have a chance at a real life, I have to do this. Probably more than once.

His therapist and I have talked about this several times. She has always been very honest with me about what to expect. I admire that.

We have about a month to prepare. It’s not enough. How do I do this? How do you make the decision to commit to something that lasts this long?

Yes, we’ve already been through two hospital stays. The first one was five days, the second was ten days. They felt like a lifetime. And yet, they weren’t enough.

Being the parent is so damn hard. I don’t think I’m grown up enough for this.

First week home

Levi has been back home a little over a week now. I still don’t think he was ready to come home. His therapist had actually recommended a sub acute stay, which could have been up to a month. But, here we are. Dealing with it moment by moment, as we always do.

We did have a medication appointment today. Meds will be shifted around a bit again, with an eye to completely getting rid of one and replacing it with another. I hate that you have to try so many medications to find the ones that actually work.

One of the bigger problems Levi has is the lack of sleep. He woke up before 2 AM today, and has been going strong ever since. He’s very cranky though, so am I.

Oh, I am open to hearing any and all sleep ideas. We’ve tried a lot of things to make him sleep better. Some are definitely sillier than others.

Coming Home

Shiloh, Mom and I went to pick Levi up after lunch today, it was great to see him. It was a wee bit of a surprise to see how relaxed he was when he came out from behind those locked double doors. But, it looked as though ten days of being away from his daily stressors had done him well. Even the dark bags under his eyes were gone! I will watch to see how quickly they return.

He, of course, wanted a Happy Meal as soon as he saw us. We were only too happy to oblige. McDonalds is his favorite place to eat. I know, I know, the food is soo not healthy. Get over it! If a Happy Meal makes my kidlet happy, well then, he will get one. Moderation and all that.

This evening has gone relatively well. He was happy to be home and see everyone. Lots of hugs & kisses. He and mom went through the house & anointed all the doors and windows. To prevent all zombies and bad guys from entering, of course. These are things we simply take as a matter of daily life around here.

Unfortunately Levi has an obsession with things related to death & destruction. Guns, knives, swords, and  zombies. They are a constant topic of conversation. And yes, I have tried to temper the subject, and introduce new ones. Doesn’t work, makes it worse, in fact. (He doesn’t watch that crap either!)

He is asleep at the moment, kind of. There has been a lot of waking up and sleep talking. He has the most interesting conversations in his sleep. Much to my chagrin, they seem to be carried out in a language I can’t understand.

I’m worried as I sit here listening to him breathe. It’s not something I can put into words really, I simply know that I need to watch him even closer than normal right now.

It’s so hard to put all this out there into the open. Our life is so chaotic. But, my son is living in a seemingly bottomless pit of darkness. If I have to put myself out there to find a way to help him, so be it.

It’s my job, as his mom to protect him. I accept the challenge.