Monday, July 12, 2010

Mountain Monday

First the fill in on the information, pictures to follow. So if you want to read the latest, it is next. If you only come for the pictures, then you can scroll down til you get there.
Little Man, Little Man. Tough times here at Casa De Tangled. Last Monday found me sobbing my heart out over everything that has gone on. My broken computer, my hurting heart, my lack of ability to cope with how difficult my son was being. We have no prospects of finding a program for the boy, well, maybe, and it is big maybe, one. I wondered what would happen. I wondered how long could I keep dealing with the level of difficulty and aggression we are at with our beloved boy.
My computer's dvd driver/reader is broken, but at least everything else works.
I was talking with Little Man's case manager, and I swear this just popped into my head while we were discussing our options. "if we lived in a more metropolitan area, would there be more service providers to choose from?" Surprised, she answered, well, yes, quite a few more. I called Bald Man and next thing you know, we are moving! Our lease is up here at the end of August, so we are leaving for a more populated area of Utah.
We have already found a program that seems to be the answer to a prayer for Little Man. We go interview them tomorrow. We are looking for a little house to rent, the boy really needs a yard to play in. We never meant to stay this apartment for so long. But at the same time, if we still owned our house, there is no way we could just pick up and leave like we are doing. Funny... I never thought I would be grateful we didn't own our house anymore, but I am.
I went from feeling totally helpless and trapped, to feeling like so many doors have been opened for us. Thank you so much for your prayers and good thoughts, I have no doubt they are contributing to our increased peace of mind.

Bad news: no summer program
Good news:His sat. respite person is picking up a couple of hours a day with Little Man so I can have a break.

Bad news: The days with the boy are LONG
Good news:his medication switch is finally working and the level of foulness of our home has gone down significantly.

Bad news: He has lost at least 10 pounds in the last 8 weeks, so we are back to having to tube feed him again at night.
Good news: He definitely has the extra weight to lose. He still has his tube and I am so grateful we can make up for what he isn't getting by eating. (I am struggling with not feeling crushed or that we have gone backward with his eating, this isn't an easy thing for me)
On to pictures! Summer is here, and it is hot and getting very dry.

Utah's summer snow, also known as cotton from the cottonwoods.

A thistle, even weeds can be beautiful.

I think this little bee is trying to do a headstand.


And finally, he is smiling! I missed his smiles while he was in his dark place.

Big adventures in store for our little family.

Monday, July 05, 2010

Working on Gratitude

After a long cry last night, which I am sure I needed and some sleep, today was a bit better.
A friend of mine came over to give me a break with Little Man. She has training in working with kids with disabilities and aggression, so she was equipped to handle him, if not completely prepared for the level of violence he threw at her.
It was short, but meant the world to me. Really, truly an angel. Thank you Val!

My laptop is fixed! Some stuff had come loose in the fall to the floor and they were able to re seat it and it fired up just fine. There is some hard drive damage, but I won't know the full extent until I look at everything. But it works! Seriously, I stood there at the computer shop and thought, it is a miracle. Thank you God and the computer dude.

I have a call into his psychiatrist's office, waiting for a return call on that.

Danielle from An Eagles View asked if she could bring dinner tonight. While it isn't a necessary thing, we could scrounge something to eat, a sandwich etc. it means so much to have something cooked and yummy to eat. Thank you Danielle!

I am working hard on being grateful today. Thank you for your kind comments and prayers. They are appreciated and cherished.

Sunday, July 04, 2010


beaten down

Ya know? I am pretty strong, and generally upbeat in the face of a lot of crap. But not today.
I have been wanting/needing to blog, but haven't had a moment lately. Little Man got booted out of another summer program, we had a person working with him, but she quit with no notice on Monday. That means I have had him, 24/7 for almost a week.
Know what I have done this week?
laundry-2 loads took me all day
meals cooked-0
anything else I wanted to do?-0
(except for Saturday, we did get respite, thank goodness, it is the one shining moment in a dump truck load of manure)
The boy is foul, foul, foul. Screaming, disobedient, defiant, ugly, name calling, violent. I have gotten punched in the face, been screamed at pretty much all day, every day.
We are working with his pyschiatrist, pediatrican, a therapist, a behavior therapist, case manager, and anyone else we could pull in to get some help with what is going on with our boy. Things are bad, very, very bad.
It has been a LONG, LONG day. I was already pretty fed up and not very happy, or patient.
Cherry on a crap sundae?
Bald Man just kicked my laptop off the bedside table. Laptop no longer works. I want to run away, I want to scream and kick and swear, I want to escape all of this. And it seems when things are the worst with the boy, when I really need a break, when I am having a really hard time holding it together, is when we have no help and at this point, little hope.
Things have been rough since Feb and seriously? I don't have it in me to be brave, or cheery or anything.
Send me some love notes, I really, really need them right now.