to any parents out there with kids you don't know how to help... do not be afraid to reach out to the best... you will find the one thing I've been looking to find for my daughter. A doctor with a confident and determined attitude.

I finally, after weeks and months of research, got my daughter an appointment to be seen by the best pyschiatrist in Boston. Speaking with him and booking the appointment with his secrtetary has given me, finally, a sense of hope that I am actually in contact with people who can help Nikki find her way through the confusion and torment of her mental illness(es).

And what timing... this morning I was researching plane ticket costs for a one way trip to Nebraska. When you get to that point of frustration, where you just want to run away as far as you can go and never come back... do NOT give up! Contact the people in your area and ask where you should go... and just keep at the phonecalls and reading... you will eventually get a date set, and although the appointment for Nikki isn't until January (lots of people want this guy's help because of his success rate of diagnosis/treatment), I am feeling so incredibly happy and hopeful for my Nikki-chick. :O) I spoke with her today, through her overly-medicated fog, which I hate, hate, hate... but I think she could hear my confidence with this appointment and this doctor. I hope she uses it, as I am, as a goal date, to get through these next few months as scar-free as possible and to utilize whatever resources she can in the meantime to get to January and find out what has been going on, why it has been going on, and to finally get a treatment plan that will lift her out of this torment and confusion.

I am going to see her on Monday with some goodies. :O) I also printed out a bunch of information on this doctor for her to read over... I want her to feel confident and hopeful, too!

In the meantime, Halloween is here, along with the Cape Cod Scrabble tournament... so it will be a fun, go-go-go kinda weekend... and the leaves are so bright, and things feel like they just might turn out ok after all. I was worried for a while that things had gotten to a frightening and downward-spiral level, but now I feel if we put the process of action into place things will go forward and no longer in the circles. Where Nikki will see her own progress and know she is not destined to live the way she's lived inside her mind and heart... where all her moments are in her control again.

had an interesting phone day yesterday... excellent discussions with a doctor, a teacher, and Nikki. And two phonecalls with the 'bonehead brigade'.

Today I work a small shift and possibly try to attend the cribbage tournament tonight. Tomorrow I finish sorting out things for this weekend (Scrabble tournament). House, paperwork, triple check with the chicks. Friday begins the go-go-go until Monday... Friday night we might attempt to go see Big Nurse, too. Boys are ready and excited for Halloween, we've been to quite a few parties already.

A big, warm hug and gentle kiss to the cheek for my buddy, Randy, in Nebraska.

set up a picture phone area at www.mobog.com/irpac

working on various things next week... Amy's wedding pictures and video, Boy Scout website for a den leader leaving the area, and some more writing to bbs and ptsd.

Lots and lots of Halloween fun this weekend and throughout the week. : )

Was thinkin' about somethin'... I'm best for Nikki when I'm strong of mind and happy of spirit... I have been so wiped out these past few weeks and that definitely has had an effect on Nikki. I am going to do my best to take this recent strength I feel and keep it intact, no matter how upset I get at the system, no matter how afraid I get for her, no matter how any of this pans out... I've got to remember to keep my own head on straight and not allow myself to be torn apart by the games and stupidity of a system so inept it's got numerous families in the spot we are. I've also got to remember that I am not the mother of one, although I often feel that way towards each of my children... it's some kind of odd mom thing. I sometimes get so focussed on each of them as individuals, which they each are, but perhaps what I should do is consider them also in terms of a group, a society within themselves, as children who are growing up in the same environment and being influenced by the same external elements. If one child feels astray, the main group should remain strong, not weakened by the chaos, so that the child who feels mentally astray will naturally gravitate towards the strength for compassion and strength of their own to be renewed. I can see why all of us have been nervous around Nikki and her unpredictable outbursts, and I can see that the nervousness has probably made Nikki feel more helpless. It's important to keep a strong homebase, to be honest about the fears, but to also work more on the keeping of the strength. Simply put: less fear, more positive actions to keep things strong.

The system, I noticed, tends to wipe families out and exhaust them as resources and then turn around and blame that weakness for the mental health issues... this has been going on for decades. But it doesn't take much digging into the background of any family with a child who has mental health issues to see that for years and years the family unit was strong, doing its best to help a child with the mental illness and just got burnt out when the child's illness got worse and the outbursts less predictable. The more people I talk to the more I can see that the system plays more of a role in things deteriorating than they do helping it improve. It is usually at the sacrifice of entire families before any actual help is given and received. This is something else that must be changed within the system. Help has got to be more prompt and more results-oriented as the divorce rates are extraordinarily high and unneccesarily so.

I feel a new sense of hope for Nikki. But a lot of that hope comes from just forcing a positive outlook on this out of my own determination to reclaim a sense of direction in the circles of 'mental health care', which is currently neither caring or healthy. For any family that has put up with it... it's destructive, incompetent, and at some point I predict a large-scale demand by many families that things be made to function better for the patients who suffer these confusing mental health issues and the families who get pushed around by state hired bullies and paper pushers. Fucking jerks... how they can even sleep at night without pouding headaches of guilt and remorse for children and families they have failed more than helped is beyond me. I'm in the process of rounding up links to the most current statistics I can get on how much 'help' the department of mental health is... I've already got the education statistics, dismal enough, but nothing in comparison, so far, to the department of mental health's overall let down of patients and families. Combined, these two major key players, paid for with tax money so that families don't have as many choices or options financially, in a child's mental health well-being are about as capable as a one-legged dog in a sledding race.

Hey... if anybody reading this has been through the same, feel free to email me. BagOfEyebrows@gmail.com And thanks to those who already have emailed me with information and/or for just letting me know you've been there and know how I feel. I was pretty sure I wasn't alone in this... it's so good to know I'm not only not alone but in the company of other logical, rational people fed up with a system that seems to be good at making up more new names for conditions and pills with less actual success and far less positive results. Mental health issues and conditions are on the rise, autism and other serious mental health issues, which is a testament to how badly the system is failing... yet their profits go up. Explain that... ?

While I'm being all semi-political, I'd like to direct anyone reading this to a few websites I found interesting... www.lp.org and www.badnarik.org

If you're as frustrated as I am with the system, consider those links as possible alternatives. I think you'll find having your own money in your pocket to make decisions and choices outside of the realm of possibilities in the current 'system' would lead to a lot more success in helping those we love overcome the toughest battles they fight. And a private sector would be far more interested in success to back up their cost than the system currently in place which doesn't have to worry about failure much at all... they still get paid, and they don't care about their reputation as it bears no influence on their profits. Being funded by the government also has its perks.

Will be at a family Halloween gathering for most of today... have a nice weekend, everyone, and GO REDSOX!

back to waking up at two or three a.m.

big meeting today... again. Meetings instead of action as she gets worse. Unfuckingbelievable. Hoping what I wrote up forces some major changes by next week.

Feel tired but prepared for today.

blogger burp... the posts sometimes do not post. Nudge.

so much for safe mode... I'm the equivalent of a hard drive melt down. Ctrl, Alt, Delete all you want, there's no rebooting this situation. Tears roll down my face numerous times a day when I'm alone, and sometimes when I'm not. I was sleeping four hours a night for a while, unable to sleep. Now I am going to bed early and waking up ten hours later feeling exhausted, empty, and wishing I could just stay in bed. I feel like throwing up almost all day, every day, since Billy's phonecall from prison.

I still haven't taken back up smoking, I quit back in March... I get sick just thinking about smoke going into my system right now, but at the same time I'm craving any kind of mental calm, even the plastic calm of five minute oxygen deprivations. Meanwhile there's that constant voice inside me yelling at me to stay strong, don't give up, blah blah blah... I keep cocking an eyebrow at that voice and asking it to go ahead and give it a shot if it wants to, because I can't. Then it hits me that as much as I think I have given up, my actions throughout each day suggest I haven't... I keep reading and making phonecalls, still in a search mode of sorts. Here's the websites I've found somewhat informative/helpful:



http://cms.psychologytoday.com/articles/pto-20020301-000035.xml

http://www.cabf.org/resources/

http://www.bipolarhelpcenter.com/index.jsp

The more I read, the more I begin to feel that a lot of money/resources and time have been spent coming no closer to an understanding of mental illness of this kind. And I know for certain that if it goes unchecked and unbalanced it leads to far worse situations for not only the person with the condition, but also those people around that person. Nikki's father is a testament to that, as well as my brother and mother. I know this from personal experience as well as from reading up on numerous cases where the "system" got baffled and just shifted cases around without definitive diagnosis and treatment plans that did not work (perhaps because the diagnosis was incorrect or nonexistent) and in most worst case scenarios the 'fad diagnosis' of the year was put upon the patient (adhd, add, bipolar, and this year's favorite, BPD) which is exactly what has happened to Nikki. She has been diagnosed, at one point or another, as having each of those. So which is right? Are all of them wrong?

And of course we find that there's still a stigma and fear of the word 'schitzophrenia', as if it's a dirty and damning word... I'm sure words like autism and md got that same stigma for a while... but it's not gone unnoticed by most that some of her behaviors and thought patterns don't fit the bipolar/bpd, adhd/add, or any other fad diagnosis. And I'd like to see it at the very least ruled out as a root cause, or, if it is the case, diagnosed and treatment begun immediately, because in each case of successful treatment it is stressed that early diagnosis played a key role:

http://www.mentalhealth.com/book/p40-sc02.html#Head_12

I am not afraid to acknowledge this if it is the situation. I would prefer it be ruled out and not be the case, because I obviously would rather her situation be a little easier for her to rise above and take control of, and schitzophrenia is neither easy or completely controllable. I was happy to see that Nikki didn't exhibit at least one-fourth of the symptoms. It gave me hope that she very well may not have such a hard condition to cope with. But after talking with Billy about his mindset at Nikki's age, I am concerned as he talked about the exact same things in his head that Nikki has discussed happening to her. I thought most of Billy's condition was environmental; I can see now some of it was not. I can see now that it's probable my mother also did not become the monster she was because of just her environment, but more likely was born into a mental condition that caused her to destroy her own life and the life of those around her with little control over it. If anything positive has come of any of this it is that I am beginning to feel compassion for my mother, whom I suppose put up as big of a struggle and fight against her mental illness(es) as Nikki has. I also feel Nikki has a better chance than my brother did because I lucked out genetically and didn't get the genetic deviation my mother got from somewhere in her family tree. My brother and mother suffered at the mind of each other, it appears, both caught up in a mental illness that led both of them to make the most destructive choices of all. My mother's abusive behavior only increased an already hostile mental state in both of them. And in living through that with both of them, I got my own mental weaknesses and breakdowns, which I guess is why I feel so ready to give up. But because it's her I can't. Even though I want to get away from all of it, from all of them, the same parts of me that wouldn't allow me to give up on my own life are forcing me to carry on and not give up on her mental stability and potential for living a great life.

But I am really, really, really tired. I don't think I've been this tired in my entire life. Somehow I am not sure if this is just some kind of joke life is playing on me? Because at every turn something else odd and surreal happens, as if a test of my own endurance. Whenever I think that, it makes me more determined to do whatever it takes to help Nikki, because I refuse to have her be the punchline of a bad joke. I refuse to allow any of my kids to go through more than they should have to go through in any battle life hands them. The system has got her in a fucked up limbo state of not-sure-where-you-are-going-next, a shitty state for any kid to be in. She's willing and ready to see this all through and do the work; I wish they'd give her some hope instead of pipe-dreams of coming home and miraculously being 'cured' by putting into place the same things that have been tried at least three times each over the past six years. I am beyond angry at the system for recommending something that has been tried so many times and been proven ineffective for not only Nikki, but numerous other kids who suffer the same incompetent treatment.

No matter what it takes, no matter what resources inside myself I have to grab into, I will do my best to see that Nikki gets hope, strength and a clear diagnosis and treatment plan for a situation she did not create but that came of her just being born. Having just said that, I now feel like I want to hit bed for the night and it's only 10:42 a.m.

I remember a day many years ago... over eleven years ago... Nikki was dressed up in a cute dress with her little sandals, so it was probably August or early September. She was running to the car, we were going to visit her playmate and run some errands. I remember feeling so happy that Nikki had been so calm and connected that morning. I watched as she skipped across the street and opened my car door and started to crawl inside, as she always did, over my seat and into the back seat... she never went in through the back door, she always had to go over my seat when getting into the car. She'd still do that now if she weren't so tall, I bet. As she crawled towards the back seat I realized that a large, thick webbing was around the areas where she'd just climbed through. Then I saw the spider, up top near the roof of the car, dangling down from his now busted webbing, and he was starting to descend towards Nikki. This spider was the size of a man's thumb.

Realizing I had to get her out of the car as fast as possible, but not wanting to scare her, I just stopped in the middle of our quiet street and said "Nikki... come here, I want to show you something and give you a hug!" and I said this with such love and with zero fear, even though my insides were racing with a fright bigger than a million Halloweens put together. It wasn't as if this spider could kill her, but it could hurt her, and I had to get her away from it. She looked at me at first as if she were going to continue to crawl towards the back seat, but then she saw my opened-hug arms out to her as I knelt down and the love in my eyes and on my face, and she got out of the car, the spider's web clinging and the spider drawing nearer, and she ran to hug me and as the spider's web broke away and set her free, I hugged her so close and started to laugh and got a tremendous sense of relief that she would be ok.

I wish so much I could do that sort of thing right now, and feel that way again with her. That love and hugs could draw her away from impending dangers. That all it would take to get Nikki to safer ground would be to playfully encourage her to just run towards a smiling face and a happy hug.

A few phonecalls have come in throughout the typing of this entry. I am hoping that eventually I speak to somebody who knows a doctor or a place that can help... am considering now canceling all health insurance and just paying for a private hospital, if the HMO/insurance aspect of it all is getting in the way of getting Nikki help. The only trouble with doing that is Kenny's health issues, which definitely need insurance coverage as there's no way we could afford both a private hospital/schooling environment for Nikki as well as Kenny's Crohn's disease treatments (as it is, private hospital care runs about 200-300 per day, and I'm not even sure how I'll find a way to afford that). I need to find out if there's a way to wait for an insurance company to deny payment but keep the insurance for other family members and just pay for the private care separately? I think that might be a possibility if it comes to that. I do know the current treatments for Nikki aren't working and she's just in the same cycle she went in there with. 4 major meltdowns since she went in there and still they won't get her into a longer term treatment center. I get the feeling Nikki isn't far from giving them the kind of meltdown they need to hear/witness to get her the help she's been asking for this entire year. I'd rather they get her into a placement before her mind resorts to that, because I think with less limbo and more direct assistance she could actually pull herself up a little stronger, and if we knew she was going to be getting help we'd feel a bit stronger, too, instead of just this doubt that things are going in the right direction. Things don't seem to be going into any direction at all... just circular. The same things tried over and over again. A small, dizzying circle of same things over and over again.

I hope someday this system changes. I wonder how many families get lost in this shuffle. :(

I've got to fight harder. I've got to fight 10 times as hard. I've got to stop showing my fears and get her away from this spider quickly, safely. I've got to turn things around... they won't, they would rather run around in circles because that is what agencies do best... run around in circles of meetings and procedures and steps.

This has gotten out of her grasp of control. I need to find a place that can give her the reigns to her life back to her, to help show her how to reach out for them, to run towards them and grab them and laugh, hug, be happy to be alive and hopeful. Maybe it's a medication. Maybe it's not eating a particular food. Maybe it's a sleep pattern, a group, a vitamin. I know a place exists that can do that. I just have to find it. If I contact enough people, somebody will know faster than I could find out by researching it. If I try to do the cries for help for Nikki, maybe she won't have to anymore. If the right place is found, they can get things going in the right direction. We need that more than anything right now. Not just Nikki, but our entire family. We're all invested in this, because each of us has done our best and is unwilling to put her, or ourselves, at risk anymore.

The system needs to change.

If my brain were a computer it would look like this on my face:

:::::::::::::::::::::::::::::::::::::::::
:::::::::::::::::::::::::::::::::::::::::
::::::::::SAFE MODE:::::::::::::
:::::::::::::::::::::::::::::::::::::::::
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I pressed three a few days ago. I'm tired, wiped out, zapped, maxed, ready to shut down and walk away. Obviously I can't just up and go, but the feeling of being between a rock and a hard place feels more like being between a bed of nails and a large machine of ever-pounding hammers. I think I've said "I don't know what to do" over four thousand times this week, both out loud and inside my own head. I hate that feeling. It leads to a feeling of run for your life. And without having the run as an option, what is there to do? Functioning while everything falls apart more and more seems like self-torture. Being an active part and seeing no results is the most frustrating aspect of all. But, as I already figured out long ago, I can't fix this. I doubt any of the clowns working on this can, actually. Barb brought up a good point... until I feel confident in the people helping us, I will not feel confident about things getting better, and without that confidence, I feel weak and helpless.

It doesn't help to see and hear of her decline, which although predictable more so this year than others, is still heartbreaking and devastating to watch. And I definitely feel the main people involved in this, all four of them, are not at all confident themselves in their own abilities. It feels as if the majority of them are just gliding on job titles and schooling degrees. I need people working with our family who are inspired, who are confident in themselves, who have a desire to genuinely fix things and who are really determined to see progress... within their own abilities and effect on making things work, NOT a focus on keeping their job titles intact or keeping statistics or proving their ability to shuffle paper... not that I think any of them are undeserving of their 'titles'. I am sure they all worked hard to get to where they are at... it' s just a shame to see all that hard work mean nothing more to any of them than to use it as a tool to see who is the best at passing the buck and sticking it to the other agency. The behavior displayed at this meeting pretty much summed up to me that I'm positive I do not feel a part of this *team* and, most importantly, I don't want to ever be a part of something this malfunctioning and non-working. I'm going to spend next Tuesday calling around to see what doctor(s) I can find in Boston who may be able to help. There's also 2 national numbers I got that I can call for referrals.

Kenny and I are at odds with all of it. He's pretty much had it... I know how he feels. This isn't the kind of life he wanted. It sure as hell isn't what I planned on, either. But he's right about one thing... most of the dilemmas and problems/chaos stem from my family. My mother, my brother, the fucked up genetics of my own choices, and I know I have been wishing for 'normal' for quite a long time, so I do know he's not being unreasonable to be pissed off that all of this keeps interfering with simple plans and daily life. If I could give Kenny just me, I would, but I can't, and never can. I've got Nikki and I have done my best to keep my mother out of our life, and even Billy, but you can't change reality and the reality of the situation is that things are going to take some work and time to sort out. None of this is going to just go away. I think my biggest fear is that things will get worse before they get better... I'm trying to keep the boys safe from that, as well as Nikki safe from that. Because of that, my only option seems to be to take myself out of the equation (not suicide, just out of the picture, away from things so that I am not the factor that puts the boys in harms' way with the mental illness and put her in a position of being forced back home to parents who can not help her, who do not have the abilities needed to help her.)

I am livid at the agencies for creating this much limbo in our family for fear of diagnosing her. I am hurt that these people are more concerned with their reputations with each other and their superiors than they are with their own personal knowledge that a child they are proclaiming to want to help is deteriorating before their eyes. I know it is getting harder and harder for any of them to deny it any longer. I'm thankful at least one person at that hospital had the gonads to acknowledge it to me, that it is obvious she's struggling and not exactly winning that struggle.

This weekend will be spent doing what is best for the boys. Some sunshine and parades, some leaf collecting and Halloween fun. I will safe mode into some baked chicken and mashed potatoes, a fire in the fireplace, and some fresh baked cupcakes. We will hike a nature trail, pick out pumpkins, and just be ok with being ok. Hopefully the phonecalls on Tuesday will put my mind in a stronger, more positive frame. If not, I can just safe mode it all winter. I really, at this point, don't have any idea of how else to do any of it.

I'm not sure what to make of textured ceiling paint. I'm thinking it probably looks nice on newly placed sheetrock... but on an existing ceiling and after nine hours of trying rollers, brushes, sponges and then eventually just using my hands and fingers to apply the stuff with, I have a ceiling above a small area of the kitchen and hallway that resemble the aftermath of a cottage-cheese food fight.

To top it off, I got a phonecall during the ceiling work, so the one break I took wasn't to get a drink and a snack, it was the phonecall, and it was one of the usual "let's have a meeting... " argument-eruptus. I'm so tired of meetings... I want actions, results, not 30 meetings before anybody actually does something to change the situation. I told them at the last meeting what I thought would be best: a diagnosis. A treatment plan started and monitored in a safe environment. I'm not sure how many times they need me to say what I think would work (getting a diagnosis and establishing a treatment plan in a safe environment) just so they can just tell me that what I'm asking for won't happen. It's almost as if the word 'diagnosis' has become a bad, bad word in the field of mental health. They'd rather wing it on trial and error, and shift blame and responsibility around. Meanwhile things just stagnate, in limbo, and the behaviors are still ocurring but now they just suggest it is because of the 'stress of the situation' (I pointed out that the behaviors happen even when no stress is present. The mental illness itself is responsible, and they need to diagnose what exactly it is...)

And I am waiting for a shoe to drop, because I know it's going to at some point. Not that I can name the shoe... but I know that although my buddy Mark was right about me being more concerned than they both are, the fact of the matter is that it is more than obvious that something has not happened in over a month... and I'm positive that is going to be brought up at this upcoming meeting, by either them or me, or worse, her. And I know how I feel about it and what my answer will be as to what I think about it... I think it sucks. I feel alone. I am angry. I have no idea what to do about it, either. Which only adds to the whole entire feeling of hopelessness and emptiness that no matter how hard I fight to stay on top of, no matter how hard I try to think positive, no matter how hard I try to think of ways to fix this... it not only remains broken, I see variables that are going to lead things going in the opposite direction than they should be. I see things getting more broken, weaker, shattered. I focus on painting the ceilings, doing paperwork, anything that actually makes a difference rather than worrying which solves nothing. But lately the worry has slipped inside corners of my mind and frightened me. Because I don't know how to fix the domino-effect this all seems to be having on various aspects of too many variables.

I'm working on changing my mindset from one of 'fix' to one of 'change the direction it is going towards', but I can't seem to shake the feeling that I'm suggesting to myself that I'm capable of something that I am not actually capable of with either situation. So I'm not sure what, if anything, to do.

Going on auto-pilot for a while. Not sure of what else I can do, so I gotta just function. Got enough auto-pilot stuff to do to last at least a good two months here.

I have swamp-smelling ass gas and my stomach is on fucking fire and flipping around like it has come undone from whatever holds the tummy area in place. Spinning around and around in that pre-vomit crappy feeling, I googled and found out some damn belly-virus is going around Massachusetts. None the less, today I am painting the ceilings. If I throw up, so be it... the paint fumes will be good to cover up the fart scent that my butt has permeated the house with this morning. I have a little bucket I can keep under the ladder, and feel confident I could easily aim for it and just resume painting when the yak-up is through. I'm sick (heh) and tired of this ceiling getting delayed and I'll be gosh danged if some freakin' belly flu will stop me. I WANT HALLOWEEN DECORATIONS UP, Boooooo!... I need a spooky fix. I need some autumn fun and leaves and the smell of apples and cinnomin.

Amy and Ray's wedding was beautiful and comical and heart-grabbingly tear-flowingly extra-special perfect. I filmed the whole thing and should have a nice collage of scenes and stills put together by November... and it will be going online so I'll be sure to put a link to it here in my blog.

I hope to work this week on Billboard Sky and the Hooker and the Vet stories, and also to work on some other writing I've been meaning to get to but keep getting delayed on. I did get the new pictures up on the revamp of the cheesy family website.

My goal for this week is to take my mind off of things I can not currently effect/change and to focus on getting things in order here at the home as well as with the ideas jotted and not written yet. By the 9th of this month I intend to have gotten the strength to carry on the demand for a diagnosis, as there's no way to go any further without one. We can not go around in circles any longer; her most of all. We are all dizzy and exhausted and I will no longer expect the impossible from ourselves... we can't fix this. None of us, not even them, until we all know exactly what it is we're trying to fix/help/balance.

I am bringing her up some spooky deocrations and crafty, fun things to do... I think it will be a good way to help ease her mind, too, from trying to solve things herself. I think she and I both have been trying to fix things without knowing what exactly is wrong and odds are she is even more frustrated than I am with things. I will most likely drive up there tomorrow.