Scrapbooks

A couple of days ago my daughter was having an episode.  Screaming, yelling, and frankly too much frustration on my part (as well as hers).  I know it's ridiculous--we've been going through this for so long.  I should be able to operate every day with the realization that my daughter cannot function like the typical eleven year old.  Yet every day I get to the point that I am expecting her to behave like one.

Actually, when I hand her a book to start reading (we attempt to homeschool her) or tell her to do anything--I know in the back of my head that she is not going to do it.  Yet my frustration over the fact that she won't do it quickly escalates.  I've got other kids watching this.  Mom telling her to do something and her not only ignoring it but getting extremely ugly, calling mom stupid, etc.

My daughter has lost so much and can function only minimally at this point-eating, sleeping (up all night and then crashing), sometimes, after intense frustration and fit-throwing, able to get dressed appropriately to go to church or choir.  She cannot get schoolwork done or keep even a pathway cleared in her room.

Often, we have to restrain my beautiful girl when she is raging.   There is no hiding her raging or us having to restrain her from my other kids.  Of course, I know this is not a good thing for my other kids to be bombarded with on a daily basis. Of course.  But what does a family do?  We are family.  And although we have often considered hospitalization or a special boarding school, I know that this would not allow for her to be treated for any of the true pieces of the puzzle.  She would immediately be taken off of antibiotics, supplements and put back on psych meds.  And puch meds have never worked well or for long.

So we've held on to this situation while continuing to search for answers.  Desperately search.

The other day after a pretty regular episode, which included her screaming that I don't love anybody, nobody loves her, she just wants to be loved, I got out the scrapbooks that included when she was born.  we looked at those pictures, and I reminded her of how much we all wanted her and were so excited when she got here.  After about 3 minutes of continued ugly commentary from her, she began to soften.

I noticed how much younger my husband and I looked.  But I also felt the mom that I used to be.  I saw the hope and positive attitude in my eyes.  I felt that all-immersed mom feeling....the feeling that came long before me needing frequent breaks from the screaming and constant "line in the sand" moments that often happen several times a day now.  I saw the me that thought that the intense love I have for my children would fix anything that could possibly come up.

And I wondered if my children even remembered that mom.

Yesterday, in the midst of all of the normal, I had one of the few clear moments I'v had in a while.  In the morning, my four year old tried to wake Sweet Girl up by hitting her with a book and jabbing her with a pen several times...not normally her nature.  And then later when I told her she couldn't watch Dora on the computer, she asked all the other kids how she could get the computer without Mommy knowing.  That sneakiness has not been her normal, either.

And my clear moment looked like this:  Constant chaos and fighting IS my youngest daughter's normal.  It has been this way every since she was born.  And what kind of parent lets their child grow up with this distorted state of normal?  This will certainly shape who she becomes.  We will continue to search hard for answers, including methylation answers, auto-immune answers, lyme answers.  But if things don't change soon, we will have to make some hard decisions in the best interest of ALL of our children.  

Please, Lord, bring some relief soon!

just some thoughts.....

Another day, another exhausting episode or two with only more to come.  Today is the first day of summer.  The first day that my daughter will be home all day, every day, with the exception of a couple of VBS programs, some math tutoring and a mini-vacation or two.  And I look ahead to a very tiring time.

She has now been on something similar to Tegretol for three months.  Initially, she had two fantastic days, and then back to the same old song and dance.  Her psychiatrist increased the med from 100 mg twice a day to 300 mg twice a day.  I would say that it is affecting her like water.  Wait, water would probably be better in that it might slightly detox her.  She is also on Abilify, which we have increased substantially.  To the point that I really don't want to go any higher.

I look back over the past 18 months, and although we have had some times that have been a little more bearable, there really has been no good time.  What's more, her maturity level has either decreased or she's just been passed up by other kids her age.  And she now has these obsessions, which are relatively new.  Not like you think of an autistic kid playing with toy car wheels, but obsessed over a sad story that she saw on the internet and trying to corner anyone she can to watch the rather lengthy video.  Making posters about the baby boy in the video, etc., etc.

So, I'm not really feeling the medication groove right now.  We're backing down off of Tegretol, increasing vit c, niacin and researching some more.  Strengthening resolve with yeast detox.  More water intake.  Trying to boost her immune system, increase her detox, support her liver.  She'll stay on a high dose of Abilify.  At least for right now.

Our psychiatrist says he's going to have to do some more research.  Always a banner day when your psychiatrist who has dealt with things like this for 30+years is stumped by your case.

So I am now reading Body Ecology by Donna Gates and What Works for Bipolar Kids by Pavuluri.  I'l let you know what I find out....