The wurster, the better

With my leg problems, I really have been laboring for weeks now. Things don’t seem to be getting any better. I seem to take afternoon naps because I am just exhausted after doing any kind of activity that involves walking. I see my knee surgeon again on Thursday and hope the EMG test results show something. I also had blood work done but that was primarily for my heart doctor. But let’s see.

Our daughter Alicia has also been laboring and struggling with her behaviors and control of them. She has been picking more and more these last few weeks since camp ended and her peer support went back to school. I hope that we can find someone to be a buddy to her soon. And I hope we can find other daily activities for her.

Just a couple more days off and then back to work.

Why wouldn’t you want to know if you had a disease that could be confirmed by a single test? It makes sense to me that you take the test and know one way or the other. With this knowledge, you can then move on with your life and plan for the future. If you continue to do things the way you are, you could be wasting a lot of time and effort. But as some would say, “I don’t want to know if I have another disease. I don’t want to deal with that. I just want to keep on doing what I am doing.”

Oh well.

Alicia seems a little bummed today after coming home from camp. She is quiet. I think I know why. All of her fellow campers are going bowling and eating dinner out and then staying overnight at camp. Alicia wasn’t allowed to stay unless we had someone spend the night with her. They wouldn’t even let someone just go bowling with her. I just don’t understand, especially since it’s a camp for disabled kids.

But this is what we have to look forward to for Alicia for her long life ahead. You can’t change people’s opinions. But how do you explain these kinds of things to her!

Things seem to be going smoothly, or should I say things that I can control. I had a nice night out last night with friends. Then, this morning, my wife tells me that the doctor increased our daughter’s medications from 350mg to 400mg per day because of an observation a therapist made. Our daughter’s behaviors change markedly when she is having her time of the month. Her therapist noted this and wondered if there was something that could be done to help her during this stressful time. So, the psychiatrist’s solution was to increase the dosage. That’s not what was asked but that was his quick and easy solution. Instead of thinking about how to help her cope during this time, let’s just increase her medications. I asked my wife why she complained to me about it but not to him. Who the hell knows? My wife is over-stressed and sometimes can’t handle things.

And I’m waiting for the lawyer to get back to me with his good tidings about helping the trust fund executor fill out the forms. I can now proceed with some other things. And also wait for my brother-in-law to do his thing.

I was thinking about a video snippet I saw the other day about Kendra. You know, from The Girls Next Door and an Eagle’s football wife-to-be. She was telling her Mom she was pregnant. Her Mom didn’t take it well and told her she wasn’t pleased and thought she was rushing things. Hello!!! Where has her mother been for the last several years? Why would she think this after letting her daughter live at the playboy mansion? Come on now, be supportive.

How do you find out what is really bothering someone? Well, you would usually ask them. And you would hope that they would reply in a truthful manner. But what if someone could not (or would not) reply? What would you do?

Some observations:

My daughter gets into unusual moods and elicits certain behaviors. She rips papers, magazines, and books. She takes things apart (but can’t put them back together). She plays with puzzles but seems not to want to put them together. However, she was playing a puzzle game on the computer and was putting the pieces together. Although, at times, on the computer, she just seems to click randomly with not much purpose. She moves things around on her desktop but doesn’t delete them.

She has started standing right up close to our new LCD HDTV. She has always been afraid of movies (in theaters). But at home now, she seems to enjoy the big screen. However, she gets afraid of certain things that happen on the screen, maybe mostly with zooming in and out in certain scenes.

She started petting our dog the other day which she never did? She always picks up our cat, but hasn’t gotten this friendly with our dog ever. She follows you around event when you don’t want her to. She seems not to identify others private space.

She seems to be more sensitive to things at certain times. The biofeedback that I do with her sometimes annoys her such that she takes off the headband. At other times, she sits through the entire 15-20 minute HEG session. Why? I thought there was a pattern when she had done some physical exercise (on the trampoline or walking), all was well. When her Mom annoys her, she is noticeably annoyed and doesn’t do well. It may have to do with the video that is being used during the session. She really likes some more so than others.

Maybe she had a bad day at school. We won’t ever learn this from her because she doesn’t communicate well.

We continue to try and learn. Lately, having read some comments on a neurofeedback listserve, I feel that a neuro reorg may be important for her at this time. She is exploring and seeming to come out of her trauma. It’s as if she were a 3 year old again. She tests and tries everything. We have to keep things locked up as we parents do when our kids are young. It seems that she is rebuilding the neurological connections that she lost in her trauma.

What is it that we need to do now? We have gotten her out of her current school and into another that will hopefully be able to guide her in her last year in the education system. She will be 20 next month and at 21 is deemed an adult. Then, we need to find things in the adult behavior system for her to take part in, as long as there is funding.

Our daughter had been off all medications except for adderrall for a while (perhaps 6 weeks or so). She was doing quite well, except for some new behaviors, like ripping paper. But she seemed to be progressing better than she ever had. She had become more verbal and talking with us ever so slightly. That is great.

The biofeedback sessions have been tricky though. At times, she takes off the headband quite frequently. It started only with me doing the sessions, but then happened with the professional we go to once a week. We don’t know why.

The psychiatrist suggested she be put on abilify and so that started yesterday. Of course, it will be monitored. I really need to look into it as my wife has done.

Also, a new school placement is in the future to help her as best we can in the last year of her education.