For Sensitive Bodies and Sensory Overload: A Weighted Blanket

When I first spent time at Natchaug Hospital, at the time when Sharon Hinton, APRN, was still the director of nursing and it was a decent non-abusive hospital (in 2011 and 2012), I learned about weighted blankets and the amazing benefits to be gained from their use when stressed, upset, and in need of self-soothing or calming. Not everyone benefits, I gather, but if you suffer from PTSD or any of these other disorders. you might find a weighted blanket useful.

  • ADHD/ADD
  • Alzheimer’s
  • Anxiety Disorder
  • Aspergers Syndrome
  • Autism or ASD
  • Bi-Polar Disorder
  • Brain Trauma Injuries
  • Cerebral Palsy
  • Dementia
  • Down’s Syndrome
  • Epilepsy and Seizure Disorders
  • Fetal Alcohol Syndrome (FAS)
  • Insomnia
  • Parkinson’s Disease
  • Pervasive Development Disorder
  • PTSD
  • Restless Leg Syndrome
  • Rett Syndrome
  • Sensory Integration
  • Sensory Processing Disorder
  • Tourette’s Syndrome

One problem with buying  a weighted blanket for most of us however is the cost. If you don’t have $400.00 dollars on hand, it can be prohibitive to get the best or even a full-size heavy blanket. I don’t know about you, but a mere lap-size thing doesn’t do it for me, even though they tout the uses. I tried one at Yale for lack of anything better, and it did nothing at all but feel like a pillow on my lap. This was ridiculous. They would have done much, much better if they had handed me a real live cat and not pretended to be doing something useful with that silly piece of fabric.

The heavy full-size blanket, on the other hand, was great. It felt like a cocoon or a huge hug that held my entire body without restraining me. I could move around in it, and yet it held me warmly and gently. Nothing kept me in against my will and I could get out from under whenever I wanted to. In fact, the nurses made me leave before I was ready. They actually took it away after twenty minutes which was silly. This was way too short and arbitrary a time in which to keep the blanket on me. I was NOT used to it by then or calmer. Not at all. I wanted to stay inside it  and needed it on me longer. But they said the protocol was for 20 minutes on and 20 minutes off so the person didn’t accommodate to the weight. Silly reasoning. Why didn’t they ask if I felt better or was calmer? Or ask me some other question.

Anyhow, here are the directions and photos for making your own homemade weighted blanket. It is quite easy and inexpensive, and you only need to do a little hand-sewing, or if you prefer, just use some heavy-duty glue (E6000 is the best), and velcro. Both ways are fully washable.

Directions for Making A 15 pound Weighted Blanket:

The first two photos show half of the “inside, or under side, of a kingsized coverlet that I sewed Dollar Store (2 for $1) microfiber washcloths onto, making pockets. (BTW pay no attention to the the shoelace ties and buttons, which never worked but were part of a first experiment…) I placed the fuzzy side of the washcloths facedown. This is important because when I glued velcro’s stiff bristled half, face up, to the blanket at the pocket tops, the microfiber washcloth gripped it perfectly, so there was no need  for the softer side of velcro on the inside of the pocket itself.

Handmade weighted blanket with microfiber pockets for rice bags
Handmade weighted blanket

Next, (see the close-up photo) I filled quart size freezer bags (a box for  $1 at The Dollar Store) with 1/2 to 1 pound of raw rice, depending on the weight wanted, and then double-bagged these. Note: my blanket has 15 pockets but I’ve found that 15 pounds of rice is actually heavier than I personally want, despite what I thought…).Depending on your own body weight, you could prefer between 10-25 pounds of rice. The chart I found said that a person weighing 112 pounds might need 10-15 pounds and a person weighing 185 pounds would need approximately 25 pounds of weight. On the other hand, the hospital never allowed anything more than a mere 10 pounds, erring on what i consider an absurd side of caution for all…So you can gauge your needs from that.

Be aware however, that despite what a 15 pound bag of raw rice might saw on its side, it usually contains much more than 15 pounds so weigh each bag you fill carefully, don’t just divvy up a bag of rice into equal parts.

Rice Bag for weighted blanket
Rice Bag for weighted blanket

Fill the pockets with the rice bags and press-seal the washcloths against the velcro. Flap the other half of the blanket (final photo) over the pocketed half and use as a twin size weighted blanket. It works fine like this, but you could add velcro to the blanket sides themselves if you  wanted to seal it up completely.

Weighted Blanket Open
Weighted Blanket Open

 

 

 

 

 

Weighted Blanket, Closed
Weighted Blanket, Folded Closed

By the way, for gluing the velcro I used the E6000 glue, outside on the driveway on a plastic sheet, on a sunny day…I would not use anything else, but don’t do it inside without plenty of good ventilation as it is poisonous and you use a lot.

Good luck and feel free to email me or comment if you need help or have any questions. Sorry if I didn’t provide enough details but I didn’t want to overwhelm you here. I would be happy to provide more privately or in the comment section if anyone is interested.

M sleeping under my homemade weighted blanket
M sleeping under my homemade weighted blanket

 

New Art: Doctor Threatens Restraints and Shot of Haldol

Doctor Threatens Restraints and Shot of Haldol - Painting in acrylics c. 18 by 27 inches
Doctor Threatens Restraints and Shot of Haldol – Painting in acrylics c. 18 by 27 inches

This is a larger size painting than I am used to doing. I usually draw and I am scared of painting. When I have painted I have usually restricted myself to tiny sizes or just portraits. This is my first attempt at a real crowd scene or any scene at all. (I am tempted to redo the foreground doctor, to make him less cartoonish and more realistic, but for now, I will keep him as originally done. However, I don’t like the illustration quality of this painting, and want to learn how to be more painterly, so to speak!)

Made It Through the Night…PLUS Temporal Lobe Epilepsy versus Schizophrenia

This flower, whose name, Self-Heal or Heal-All, says everything, and it is not insignificant that this was the first wildflower that started me on my Field Botany path, and was also the agent of my natural history conversion experience:

Self-Heal or Heal-all (My first wild flower and the one that changed everything)
Self-Heal or Heal-all (My first wild flower and the one that changed everything)

 

Last night was a very difficult night, as you know.

I did not believe the nurse when she told me this morning that E–, who was an animal lover, would never have killed herself, leaving her beloved parrots to fend for themselves. She said it simply went against the grain of most animal people to kill themselves while their “children” still needed them. It turned out, though it took me a while to “grok” this, that E– apparently died of a combination of diabetes type 1 and asthma. The details are unclear and unnecessary but I was assured by both nurse and the building social worker that it was not suicide. Thank god.

However, early this morning things were not well, and I wonder if what  happened later on was not at work last night as well. Let me explain:

I had an appointment to see my psychiatrist, Dr Angela, at 10 a.m. and as usual I got up to drive myself there, a short distance over the bridge to the next town, maybe 6 miles away tops. It is a trip I have done dozens and dozens of times, perhaps hundreds now.

This time, however, things were different. Halfway there, on a stretch of road — I’m talking back roads not highway — a road that I know like the palm of my  hand, I was suddenly overcome by a feeling, an intense almost nauseating feeling of “jamais vu.” This is the opposite of “deja vu” — that sense that things you have never done have happened before. Jamais vu is the sense that while you are in familiar places or with familiar people, they seem strange or new or utterly unfamiliar. I have had deja vu many times, as have a lot of people, and I think it is a fairly common experience to feel as if something has “happened before” even though it is really a new experience.

 

But never before, at least not since I was ill, severely and neurologically ill, with Lyme disease, have I felt this intense feeling of non-familiarity in a situation that I know I knew very well. I was terrified, if briefly. I was not at all certain where I was. I mean, I kept driving, because my instincts told me to keep going, that my hands would make the proper turns. But my conscious brain had no recognition of where I was and no conscious notion that wherever I was I had ever been before. It was, as I said, terrifying and very, very strange.

Luckily, within minutes things had resolved enough so I knew that I had arrived at the Whole Foods parking lot, which my doctor’s office and the doctors’ complex shares. I still felt very weird. I felt in fact that I was not completely embodied, even though I carried a heavy enough bag to embody or burden down anyone.

When I got to Dr Angela’s office, the first thing i told her was that something was wrong. Yes, I had sent her the email I mentioned here yesterday, but I did not mean that. I meant the foreign feeling, the jamais vu intensity, which though faded still scared me. Thinking back, when i was so ill with Lyme it was actually deja vu, in an incredibly brilliant and vivid form, that afflicted me rather than the alienating jamais vu, but I knew that both deja and jamais vu can be commonly a symptom of either an aura or a seizure itself. Especially the much rarer experience of jamais vu.

I have had several different kinds of seizures in my life, and I have just been taken off Topamax, an anti epilepsy drug I have taken for years. I did this in preparation for a neuro-ophthalmology appointment in October (not sure why I thought it had to be stopped). So i have and had some sense that it was the d/c of this anti-convulsant that was the proximate cause if not the absolute cause for my symptoms.

But I was terrified that this jamais vu would generalize into a full-blown seizure, which I couldn’t bear the thought of. Dr Angela was quite responsive and suggested that I 1) take an immediate Ativan, .5mg as that is reasonably effective as an anticonvulsant, though better IV than oral and 2) when we found that I had stashed 100mg of Topamax in my pill compact, she had me take that as well, figuring I would get back to my usual 200-300mg within a week or two.

The appointment went — well, I don’t remember much about it, frankly. All I recall is leaving, promising to get a cup of coffee before I drove home, then realizing once I got to the parking lot that there was no way I could drive, coffee or not. I felt simply too weird. And weirded out. Too scared of having a full blown seizure, whether temporal lobe or otherwise to get in the car.

To my great luck, when I contacted my case manager, Rebecca, who works in next town over, she was immediately available and came to pick me up. That was a huge relief. I didn’t even have to wait more than 5 minutes. More, the Whole Foods grocery store people didn’t bat an eyelash when I asked if I could leave my car in the lot overnight.

Later on, Tim went and got my car for me, so I didn’t even have to do that. I simply went home and took a  nap. When I got up I felt at least ten times better. Not so weird, not so seizure-y. Less scared, and finally able to be convinced that the huge balloon of misery and terror from last night was just that, a balloon, a mistaken notion…a fiction. I was wrong, that was all. Even though the conviction and certainty felt as real as anything, they were only FEELINGS, and as so many people including my brother assured me, those feelings would change if I hung in there.

Lo and they did change and have changed. Thank heavens.

 

Now it occurs to me that perhaps even that huge balloon of certainty may have been seizure-related. I don’t have any real reason to think otherwise. I know, I know, my shrink brother has his theories. But I felt so UN-conflicted about it, so hugely convinced, that the explanation of seizure activity, comparable to the certainty that I “have never been here before” of jamais vu even though I knew I had, and also knew, as I said, that I had not caused the putative suicide…this explanation simply makes more sense and feels  “more right” to me. After all, why would I suddenly feel like I did anything to E— who was not all that important to me, or no more than anyone else in the building really. It felt morever just so hugely compelling, in precisely the same way that impending doom feeling of a temporal lobe seizure feels — it isn’t real but it is unshakable, utterly unshakable.

I don’t know, of course. The shrinks — and I include Dr Angela and my brother — would like to make it all about me, all about my conflicts and my mental illness however they want to define that. But I wonder now how much my ongoing (but unofficially diagnosed, that is, only by psychiatrists) TLE has affected me all along. I wrote about this conflict, this contamination of any schizophrenia diagnosis with temporal lobe epilepsy, and months ago. It seems strange that so many have “both”…|

Nevertheless, I have never had my seizure feelings checked out, largely because I do not want anyone curtailing my voluntary driving. And I don’t like doctors having that power over me. I also do not trust them to take me seriously, as a NON-psychiatric patient. I do take AEDs to prevent olfactory hallucinations, (NOT as mood stabilizers) and such, but why see a neurologist who might tell me I can’t drive a car for any length of time when I have never even had a fender bender from this? Or who might, and this would feel just as bad, tell me it is “all in my mind” not in my brain…!

Reaching Out…Will I get past this?

GUILTY AS CHARGED!
GUILTY AS CHARGED!

All I want to say is that someone connected to me died on Saturday and I have reason to believe it was suicide.  This is what I wrote to four people:
“The assistant building manager —– died — i am certain it was suicide — Saturday…i feel to blame, to blame, to blame. It is not that i knew or could have helped her, no, i feel like i caused her to kill herself. I’m shaking in –what? — terror, something! Even the music on Pandora is blaming me. What have i done?”

For hours there was no reply. I located two cigars in the bottom of an old purse, knowing what I had to do…I planned to place this photo:

Fire to Set something or someone alight...Me?
Fire to Set something or someone alight…Me?

and let fate determine the consequences, both what eventuated in terms of the voices and what happened after that. All I knew is that even Pandora “radio” is blaming me for the death — suicide as  I suspect — and I do not know what to do. I have already been responsible for two suicides of friends. How can I take this again>???

Then my shrink brother wrote me back, after I thought he was long ago in bed and asleep. I quote him in part: “you feel guilty for taking care of yourself. I hope that makes sense. I know it applies to me, so I’m not just saying it. Let it go. You had nothing to do
with her death. It’s sad, if it indeed was suicide, but just leave it at
that. I do think it’s more than symbolic that the person you’re guilty about was the manager of the building you hope to leave for good soon.”

Then he suggested that I take an Ativan (for a change?) and go to sleep. I wasn’t going to, I was going to do something that was ordered of me, and which I felt was essential. But I feel a little less alone, and feel as if I can hang on another night. At least he didn’t get angry and tell me I am not his “top priority”…as if I needed that rammed down my throat ever or again.

I may not make it all night, but if I can sleep it would help a lot. I barely slept last night at all and all these songs on the Bruno Mars’ station are getting to me. I am crying because of how bad I feel…

Will I get through the night? Only the future can tell. I will take the Ativan, against my better judgement, and I already took the half that I refused of Geodon, much against my judgement because otherwise I would be blamed for everything  that happens from now on. I do not need the Geodon, but I know what the nurse will say if I refuse it. Until I get to Vermont and then I am free to do what I choose, and if that means — well, I won’t go there right now.

Thank you for listening, if anyone out there really is — either there or listening.

This is what the voices really instructed me to do...
This is what the voices really instructed me to do…

P

Jason DeRulo: New portrait

Jason DeRulo, painted with fantastic CARAN D’ACHE Lumiere pencils, among the most expensive yet worth every penny. smooth and incredibly buttery color that just swipes on…Yet  hard enough to keep a point and not crumble under pressure.

Just make sure you sharpen each pencil by hand as you don’t want to waste a smidgen of these valuable tools!

Jason Derulo
Jason DeRulo = my art photo isn’t the best but it gives you an goodish idea of the portrait..(colorized from B&W and reversed so the left is right etc.)

I have loaded a DeRulo music vide (lyrics) to go with my portrait, but who knows how long it will remain playable. ANy opinions on portrait welcome. I had to imagine the colors from a B&W photo, then imagine Derulo again, having reversed the orientation horizontally so his left becomes his right  etc.

(Now it might not look like him at all, taken from the mirror reversal of the photo.) Enjoy song for as long as I can keep it here. (since embed buttons exist, I have to assume it is okay to “borrow” these vids.

Would love your opinion.

BW

Pam

PS am very very sleepy so not entirely sure I am uploading anything that makes sense. If not, forgive me. I will do better after a nap!

Young Teddy Roosevelt portrait and Tim’s Turtle: New Art

Young TR drawn with non-dominant hand
Young TR drawn with non-dominant hand

 

Although I usually draw with my right hand, this portrait sketch of the young Theodore Roosevelt was drawn with my left, and is much freer and (I would hope) truer to life than the right-handed portrait I had drawn earlier. I started with ballpoint pen, then “corrected” with green, brown and blue pencils in sequence. Eyes, TR’s right eye especially, still aren’t right, but I couldn’t do any more corrections on this particular sketch. Better luck or one would hope more skill maybe, next time…

Tim with Papier Mache Turtle I made for him
Tim with Papier Mache Turtle I made for him

I dunno that more need be said about this picture except that Tim is a dear friend and I owed him this turtle for two years before it was actually finished…

Papier Mache Turtle (3 feet across).
Papier Mache Turtle (3 feet across).

SING IT OUT LOUD AND BE HAPPY!

YAAY, Jason Mraz!!!!!

I fell in love with this next song, maybe it was the beat, the lyrics, or just the fact that I think Ingrid Michaelson is the cat’s meow, right up there with Mraz and, yes, Bruno Mars (!). Yes, I know, the lyrics can seem depressing, but if you are the “You” in this song, you will never fall and never be alone…Anyhow, I love this next song, depressing or not…

I’ll bet if you felt down before Mraz’s “I’M YOURS,” you felt or will feel better for hearing it. It is surely better than any benzo and if ADs work for you, well, all I can say is a jolt of Jason Mraz and Michaelson’s “EVERYBODY” (see at bottom) would be a quicker and whole lot safer than messing with your serotonin and norepinephrine levels just because Big Pharma wants your money and claims the AD’s work as they say they do. Trust me. (No, why would you trust me???? You shouldn’t trust me, I know nothing except what I read, and I don’t read all that much, due to my vision problems…)

Still, I can’t help but wonder if music played a bigger role in treatment of depression and even of schizophrenia, whether people wouldn’t get better a lot faster, or at least learn to calm themselves reliably and find a way to talk about what is going on rather than taking pills to render them oblivious. Music alone might be enough to put things back together again…Music and sleep, which knits up the raveled sleeve of many a care in this world, “balm of hurt minds” and as Shakespeare knew well, the lack of which can spell danger even for the hardiest soul.

But if we get our sleep via benzos or some other drug that knocks us out, are we really getting brain rest, or just body rest? Moreover, will we regret listening to the docs who prescribed nightly benzodiazapines after we find out we have developed either acute amnesia or its much more tragic cousin, Alzheimer’s Disease? I wonder. I wonder…How much will we choose to blame ourselves for not knowing better, and how much will we dare blame any doctor, who after all and after “primum non nocere” (First do no harm…) right? just how much will we dare to blame the doctors who told us the stuff was okay, not dangerous, and certainly better than suffering from insomnia.

Listen, insomnia is  a drag, and I have suffered enough of it for, well, I won’t say “for a lifetime” because that would mean I’d had enough, and I haven’t. But I don’t like not sleeping, not one bit. Sometimes I take Benadryl to sleep at night because i’ve been sold that same bill of goods that says, “Okay, it is OTC and therefore  must be essentially harmless.” It helps me to get to sleep yes, and sometimes even to stay asleep, though with narcolepsy it is hard to know whether or not any sleep will be properly restorative, natural or “unnatural”.

That said, Benadryl, as I am reminded every time I feel like pigging out after a night when I took 50mg…is an antihistamine, and anti-histaminic drugs (like Zyprexa) have this unfortunate side effect of inducing weight gain. So I won’t take Benadryl very often. Otherwise my appetite goes way overboard and I feel that same “eat! eat! eat!” anxiety that has nothing to do with food per se, and everything to do with yet another drug’s untoward side effects.

So what do I do in order to sleep? Well, first, I try not to worry about it…because that way disaster lies. If I can’t fall asleep easily, and with narcolepsy I should be out like a light within 4 minutes, but if that 4 minutes drags on into 7 or 10 minutes or more, I have learned to get up and do something else. I try mightily not to worry about not sleeping because it won’t do me any good. It will only make me more anxious.

So sometimes I get up and do art for a couple of hours. Or write, which in my case is far from a soporific activity. If I really am desperate to sleep, as I sometimes feel (though in my life, on disability, really everything can wait, and be postponed, if I can’t drive the next day due to lack of sleep. No one is going to need me for anything that can’t bide its time. ) Really are any of us indispensible? Maybe as a mother or parent you feel you are. But if you get snappy and  do things you wouldn’t ordinarily because you force yourself to perform on too little sleep, who are you serving — say it honestly? Wouldn’t your family be better served by your deciding to take care of yourself and sleep in, or take a nap instead of doing whatever it was you promised them you would do?

Well, enough for the evening. I am sick of lecturing and indeed I should be, because NO ONE listens to lectures, and diatribes. No one. So instead, I’ll shut up. Why not listen to “Everybody” by Ingrid Michaelson instead!

LOVE to EVERYONE,

pam

Artist Trading Cards and New Picture

Recent art work. all are ATC (Artist trading cards 2.5 by 3.5 inches) except the last.

Love lorn White Donkey pines for the black male, but he only ignores her!
Lovelorn White Donkey on Vermont farm pines for the black male, but he only ignores her!
Birth of Wisdom (Or the Eye is watching you...)
Birth of Wisdom (Or the Eye is watching you…)
Water over the Bridge (a play on the notion that the past should be "water under the bridge.")
Water over the Bridge (a play on the notion that the past should be “water under the bridge.”)
Farmhouse,  where the owners lived, across from where I stayed this summer in Vermont
Farmhouse, where the owners lived, across from where I stayed this summer in Vermont
This is where I stayed last summer, and where I am returning. For a month or two...at least.
This is where I stayed last summer, and where I am returning. For a month or two…at least.
Tidal Wave ATC (Artist Trading Card)
Tidal Wave ATC (Artist Trading Card)
Ghostly Face Trading Card
Ghostly Face Trading Card
The Eye Watches, But Let's Not Say Anything...Shhhh!
The Eye Watches, But Let’s Not Say Anything…Shhhh!

What to do, What to do, What to do?!

WARNING: THIS IS A VERY ANGRY POST. It contains angry swearing language and is “not nice”…If you only want to “like” me then click LIKE without reading, as usual. (You know who you are.) If you want to read what I wrote, then go ahead, but be forewarned: you won’t like what you read.

 

I am in the middle of a move to Vermont, the state of my dreams, the state where I was well for six weeks and where I was happy and in a happy state. Was I in a dream state? Am I in a dream state to think that I can make it there, move there in one piece? And make a new life?

 

Du must dein leben andernYou must change your life. That’s the last line of the most important poem I ever read in my life, “The Archaic Torso of Apollo” by Rainer Maria Rilke, which I read at least 30 years ago, and never forgot. Yet I never changed my life until now. Oh, I have tried, in my way, I have tried. I have tried many times to stop taking my so-called anti-psychotic medications and go it alone, but always informed the relevant medical personnel in my life, with disastrous results. I believe it was the informing that caused the disasters however, NOT the stopping of my meds. Belief, and expectation play a huge role in what happens to people, and when EVERYONE around you anticipates the worst and looks for it, when everyone KNOWs you will become psychotic without the drugs, somehow they make it happen. It happens all  the time, so that even if you wouldn’t become psychotic otherwise, they force it on you, or look so hard for symptoms that they see what might not be there. And then the hospital forces the drugs on you and you react with anger and traumatized combativeness and they react with more force and brutality and it just escalates and everyone tells you you MUST take the meds from now on OR ELSE.

 

But it ain’t true, because the meds are bogus as anyone who has ever been drugged up with Haldol would tell you, if they were honest. Haldol, the doctors’ favorite tranquilizer and “anti-psychotic” drug, does diddly-squat for psychosis. It only drugs you out of your gourd so you shut the fuck up about it. But it doesn’t change a thing inside, it just quiets you down so you don’t make the noise you did, and you submit. You submit and no one gives a shit about what is really going on.

 

Except that I didn’t really quiet down on Haldol, because every time Yale held me down for injections in the ass, I retaliated by stripping my clothing off and shitting on the floor of my non-seclusion seclusion room, and smearing it all over the place. That was my retaliation for their punishing me with a torture drug that did nothing for me only against me. And they knew it perfectly well. So I punished them with my SHIT!

 

Fuck them! Let the aides call me “Pig” and “Swine,” I didn’t care. No one believed me when I told them what that aide was doing. But I got back at him by calling him “rapist” every time he grabbed me to keep me in that room. “Darien, the Rapist!” I’d scream, just to call attention to his physically attacking me. “Rapist!” So he got back at me by muttering,”Pig, swine…” under his breath when no one else could hear him, just so it seemed like I was hallucinating. But I wasn’t. I knew what was what, and I knew what he was doing.

 

Haldol is a shit drug, by the way. It does NOTHING to help anyone but punish them and torture them, but the thing is, it is a model for all the other anti-psychotic drugs. Keep that in mind, because none of the other AP drugs works any better than Haldol and you are fooling yourselves if you think they do. You want to believe the drugs help you, and your belief makes the drugs work. That is all. It is the placebo effect, pure and simple. But the drugs also harm you. Why else would you be obese or tremulous or any of the other detrimental things that have happened since you started taking anti-psychotic drugs? Do you think they are harmless? Do you think that diabetes just happened to you out of the blue? No, the drugs not only offer only a placebo treatment that you could get on your own, but they cause obesity and diabetes as well. And a whole host of other problems.

 

But far be it from me to tell you what to do. I just know that I am not going to continue with this garbage. I will NOT be told by anyone hired by the drug companies and instructed by them as well that I should take these drugs for the rest of my SHORTENED life..BULLSHIT!

 

Look, you do what you want. If you want to live 25 years less  than you would have otherwise, fine. FUCK ME! I don’t give a shit what you do, but I will not lie to myself any longer. These drugs do nothing. They  have never kept me sane or cured my psychotic episodes. They do nothing for me, and they only hurt me. If you were honest with yourself you might admit the same thing.

 

WHATEVER!!!!!!

 

Fuck me. I don’t give a shit. Do whatever suits you, I’m outta here, I’m moving to Vermont and getting off this shit and having a better life than this bullshit in Connecticut. I’m moving on and moving out, and CHANGING MY LIFE. Du must dein Leben andern. You people can go on and take your pills and stay sick and play the good patient and pretend that Haldol and all the other derivative drugs “help” you. I don’t give a good goddam. I won’t live that lie any longer. The drugs are bogus and if you bothered to do your homework and read about them, you would know what I know. And If you were honest about your life you would admit that they do nothing for you too.

 

Go ahead, leave my blog, don’t read what I write any more. I don’t care. I’m sick of popularity contests and “LIKES” by people who don’t bother to read what I write. Don’t LIKE me! I don’t care. You haven’t even read this far anyway. Don’t LIKE me! I don’t give a shit. I’m moving to Vermont.  Connecticut and all of you can go blow.

 

 

(Sorry, but I am sick of BS and I had to get this off my chest. I don’t care who dis-likes me after this blog post. You either want me to speak my truth or you don’t…But I won’t lie any longer or be diplomatic either. Take it or leave it.)

 

 

“Protection and Advocacy” Agency in Connecticut is a Crock of Shit…

CT PAIMI What a Crock of Shit
CT PAIMI What a Crock of Shit

 

Dear Attorney General George Jepson and DMHAS Commissioner Patricia Rehmer,

I was a client of Mr Wiley Rutledge at the Connecticut Office of Protection and Advocacy, PAIMI, (Protection and Advocacy for Individuals with Mental Illness) for several years, ever since I was held in seclusion and put into four-point restraints as disciplinary measures at the Behavioral Health Unit at Middlesex Hospital in 2010. In July 2014, while he was attempting to get my complete medical records, unsuccessfully despite many attempts, from the Institute of Living at Hartford Hospital for my January-February 2013 stay, as well as records from my Yale New Haven Hospital 1971 stay, which he claimed to have obtained, he dropped out of the picture altogether. I emailed him and called but got no response. Finally I called the P&A office and was told he was “on leave.”
 I was given no explanation, told nothing. Instead, Mr Bruce Garrison, his supervisor, simply sent me all the files that he found in Mr Rutledge’s office, then he summarily dumped me. He has offered no substitute or anyone else to take up my case at CT PAIMI despite all these unresolved issues that are still pending. I wrote him that Mr Rutledge and I had been filing a case in Superior Court against Hospital of Central Connecticut  in New Britain for dragging me into a horrific seclusion cell numerous times when I was never violent or dangerous to self or others, in other words, as retribution and punishment. Also, the male guards forcibly stripped me naked while putting me in seclusion then placed me naked in four-point restraints.
All that said, Mr Garrison, had no response but to drop me from the caseload. Then in addition to the scant files that he sent, without the information from either Yale or the IOL that he promised, he sent me the case files of someone else. I now have the most private information on a certain A— H—- who was psychiatrically evaluated by Centegra on 12/17/02. How this could have happened I do not know but it should not have and I believe that action needs to be taken to see that it never happens again.
I want to know who will be working with me from now on at PAIMI because I cannot afford a lawyer (never did have any legal representation even from CT PAIMI) and why I have been summarily dropped from PAIMI case loads, after working with them so patiently for so many years.
Thank you for your urgent assistance in this matter.
Pamela Spiro Wagner

Does “January” Have Schizophrenia or Is it Her Family That is Disturbed?

I first saw videos of January on Youtube years ago, and I was appalled by the inappropriate nature of taping your supposedly disturbed child. I was also skeptical. I felt deeply that the parents had decided to label and encourage Jani to behave/answer questions in “schizophrenic” ways in order to garner publicity. Sorry, but those were my feelings at the time and they are still my feelings though I have not been able to stomach “keeping up with the story” over the years. Frankly, I would not be surprised if this case did not rise to a matter of Munchausen’s by Proxy, though no one is saying any such thing (of course not!)…

 

This article is an important OPEN LETTER  that I just found at BEYOND MEDS:

https://beyondmeds.com/2009/10/18/an-open-letter-to-oprah-regarding-jani-the-seven-yr-old-schizophrenic/

FROM MAD IN AMERICA dot com – January 21,  2013 (I couldn’t find any sharing buttons that would allow me to reblog this but the direct link can be found below)

The Hearing Voices Movement: In Response to a Father – ‘My Daughter, the Schizophrenic’

Jacqui Dillon

January 21, 2013

There was a heart-breaking and disturbing story in this weekend’s Guardian newspaper entitled ‘My Daughter, the Schizophrenic’, (1) which featured edited extracts from a book written by the father of a child called Jani. He describes how Jani is admitted into a psychiatric hospital when she is 5, diagnosed with schizophrenia when she is 6 and by the time she is 7, she has been put on a potent cocktail of psychotropic medications:

”Jani is on three medications: Clozapine, lithium and Thorazine (known in the UK as Largactil). This combination has been the most successful. Are her hallucinations completely gone? No, but as she will tell us, they are not bothering her. It’s like having the TV on in the background, volume turned down, while you’re doing something, and every so often you look up at the screen to see what 400 the cat and other hallucinations are doing. They remain on Jani’s periphery, but she can still function in our common reality.”(2)

This harrowing description exemplifies the worst excesses of responding to a deeply troubled child’s distress as if it were a pathological illness, with the full psychiatric arsenal. What ensues can only be described as an account of psychiatric, human rights abuse.

If only Jani and her family were offered alternative kinds of help such as that developed by Voice Collective, (3) a London-wide project set up to support children and young people who hear, see and sense things others don’t. Voice Collective works with children, young people & families, and with professionals and organisations offering a whole range of services including peer support groups, so young people can meet with other young people with similar experiences, creative workshops, 1-2-1 support around making sense of voices and finding coping strategies, an online support forum. Voice Collective also offers a range of support services to families as well as supporting schools, social services, child and adolescent mental health services and other youth agencies to work with children & young people who have these experiences.

As one parent who has been supported by Voice Collective said:

‘You have brought us ‘normality’ within these experiences. You have taught us that with the appropriate support young people can lead happy and successful lives. You recognise the love we have for our children and have taught us how to support them”. – (Mother of a 12 year old)

How different things could be for Jani, her family and countless other children and families around the world if there were greater awareness that such humane and healing alternatives exist; approaches which help without doing more harm. (continued below the break)

——————————

(Questions, comments and/or reflections are welcome on this website or via Twitter @JacquiDillon
Jacqui Dillon’s website: http://www.jacquidillon.org
  1. http://www.guardian.co.uk/society/2013/jan/19/my-daughter-the-schizophrenic
  2. January First: A Child’s Descent Into Madness And Her Father’s Struggle To Save Her, by Michael Schofield, published on 1 February by Hardie Grant Books.
  3. http://www.voicecollective.co.uk/)
 ———————————

Jani and her family originally appeared on the Oprah show in 2009. Many of us within the Hearing Voices Movement were so saddened and disturbed by Jani’s treatment that we wrote an open letter to Oprah Winfrey. Here is the open letter from INTERVOICE – the International Network for Training, Education and Research into Hearing Voices – an international organisation dedicated to spreading positive and hopeful messages about the experience of hearing voices across the world, reprinted again.

Dear Oprah,

We are writing in response to your programme about “The 7-Year-Old Schizophrenic”, which concerned Jani, a child who hears voices, which was broadcast on the 6th October 2009. We hope to correct the pessimistic picture offered by the mental health professionals featured in your programme, and in the accompanying article on your website. What upset us most and moved us to write to you, is that parents will have been left with the impression that they are powerless to help their children if they hear voices. We are also concerned that the programme gave the impression that children with voices must be treated with medication. We note that the medications mentioned in your programme all have very serious side effects. (For example, antipsychotics such as Haldol cause neuronal loss, block the dopamine pathways in the brain required to processes rewarding stimuli, and carry a high risk of neurological and metabolic side effects such as Parkinsonianism and diabetes. Their effects on the developing brain are largely unknown and, in our view, they should only be given to children as a treatment as absolutely last resort.)

We have been researching and working with adults and children like Jani for the last twenty years, and our work has led us to very different conclusions from those reached by the mental health professionals on your programme. One of our founding members, Dr. Sandra Escher from the Netherlands, has spent the last fifteen years talking to children who hear voices, and to their parents and carers. This work is the most detailed and thorough investigation of children who hear voices carried out to date [1, 2]. The most important findings from recent research on hearing voices are as follows:

Prevalence of Voice Hearing in Adults and Children

Recent large-scale population (epidemiological) studies have shown that about 4-10 % of the adult population hear voices at some time in their lives [3-5]. Only about a third seek assistance from mental health services. Amongst children, the proportion hearing voices may be even higher [6] and, again, only a minority are referred for treatment. Hence, it is wrong to assume that voice hearing is always a pathological condition requiring treatment.

Psychological Mechanisms

Everyone has an inner voice. Psychologists call this phenomenon ‘inner speech’ and it is an important mechanism that we use to regulate our own behaviour (plan what we want to do, direct our own actions). Child psychologists have long understood that this ability begins to develop at about 2-years of age [7, 8]. Hearing voices seems to reflect some kind of differentiation in the mind’s ability to tell the difference between inner speech and the heard speech of other people [9, 10].

Link to Trauma

A common theme in research with both adults and children is the relationship between hearing voices and traumatic experiences. In adults, around 75% begin to hear voices in relationship to a trauma or situations that make them feel powerless [11-13], for example the death of a loved one, divorce, losing a job, failing an exam, or longer lasting traumas such as physical, emotional or sexual abuse. The role of trauma was identified in 85% of the children we have studied, for example being bullied by peers or teachers, or being unable to perform to the required level at school, or being admitted to a hospital because of a physical illness. In short, our research has shown that hearing voices is usually a reaction to a situation or a problem that the child is struggling to cope with.

Voices have a meaning. A related and equally striking finding is that the voices often refer to the problem that troubles the child, but in an elliptical manner. To take just one example from the children studied by Sandra Escher:

The voices told an 8-year-old boy to blind himself. This frightened his mother. But when we discussed whether there was something in the life of the boy he could not face, she understood the voices’ message. The boy could not cope with his parents’ problematic marriage. He did not want to see it.

We wonder whether anyone has attempted to establish why, in Jani’s case, the rat is called “Wednesday”, why the girl is called “24 Hours”, and why is the cat called “400″? What do these mean for her? Why does Jani want people to call her “Blue-Eyed Tree Frog” and “Jani Firefly”?

Good Outcomes Without Treatment

Recently, Sandra Escher conducted a three-year follow up study of eighty children who heard voices, aged between 8 and 19 [1]. Half received mental health care but the other half were not given any specialist care at all. The children were interviewed four times, at yearly intervals. By the end of the research period 60% of the children reported that their voices had disappeared. Very often, this was because the triggering problems were dealt with or because the child’s situation changed – for example, following a change of schools.

Helping Children Who Hear Voices: Advice to Parents

It is important to appreciate that the desire to make voices disappear, although usually the goal of the mental health care services, is not necessarily in the best interests of children. Some children do not want to lose their voices. If children can find within themselves the resources to cope with their voices, they can begin to lead happier and more balanced lives.

The most important element in this process is support from the family. Unfortunately, we have found that mental health services often fail to have a positive effect on children’s voices, because they foster fear rather than coping. However, we have found that referral to a psychotherapist who is prepared to discuss the meaning of voices is often helpful.

It is important that parents do not assume that hearing voices is a terrible disaster but instead regard it as a signal that something is troubling their child. If parents assume that voices are a symptom of an illness, and are afraid of them, the child will naturally pick up on this feeling. This can lead to a self-defeating cycle in which the child becomes fearful and obsessed by the voices.

We would like to offer this 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices:

1. Try not to over react. Although it is understandable that you will be worried, work hard not to communicate your anxiety to your child.

2. Accept the reality of the voice experience for your child; ask about the voices, how long the child has been hearing them, who or what they are, whether they have names, what they say, etc.

3. Let your child know that many other children hear voices and that usually they go away after a while.

4. Even if the voices do not disappear your child may learn to live in harmony with them.

5. It is important to break down your child’s sense of isolation and difference from other children. Your child is special – unusual perhaps, but really not abnormal.

6. Find out if your child has any difficulties or problems that he or she finds very hard to cope with, and work on fixing those problems. Think back to when the voices first started. What was happening to your child at the time? Was there anything unusual or stressful occurring?

7. If you think you need outside help, find a therapist who is prepared to accept your child’s experiences and work systematically with him or her to understand and cope better with the voices.

8. Be ready to listen to your child if he or she wants to talk about the voices. Use drawing, painting, acting and other creative ways to help the child to describe what is happening in his or her life.

9. Get on with your lives and try not to let the experience of hearing voices become the centre of your child’s life or your own.

10. Most children who live well with their voices have supportive families who accept the experience as part of who their child is. You can do this too!

Conclusion

In conclusion we would like to stress that, in our view, labelling a seven-year-old child as schizophrenic and subjecting her to powerful psychotropic medication and periodic hospitalisation is unlikely to help resolve her problems. Indeed, the opposite is most probable: children treated in this way will simply become more powerless. Because your well respected, award winning show reaches out to so many people, we are concerned that there will be many viewers who will be left with the impression that the treatment Jani receives is the only method available. We fear that this may cause some children to be subjected to an unnecessary lifetime in psychiatric care. It is very important to recognise that hearing voices, in itself, is not a sign of psychopathology.

We hope you will give consideration to the possibility of making a future programme showing the other side of the story, one of hope, optimism and with a focus on recovery. Perhaps you could make a programme about a child with similar voice experiences to Jani, who has been helped to come to terms with her or his experiences and to discuss with the child, parents and therapists how this was achieved? If there is any way we could help make this happen, please contact us.

We look forward to hearing from you on the issues raised in our letter.

Yours sincerely,

Paul Baker

INTERVOICE coordinator

(Letter re-edited with the kind assistance of Professor Richard Bentall)

For the Selected bibliography please see original piece at Mad In America.  http://www.madinamerica.com/2013/01/the-hearing-voices-movement-in-response-to-a-father-my-daughter-the-schizophrenic/

Here are the first several comments that followed:

  1. Thanks for posting Jacqui.

    The Guardian article and story about the little girl pathologised by psychiatry and her father was harrowing to read and think about. I remember it being promoted before. Like a circus act in bygone days but more sinister and scary. Subjecting a child to these strong psychiatric drugs it’s a wonder she can function at all.

    It’s encouraging to hear of the Hearing Voices movement’s work, Chrys

    Report comment

    • Thanks Chrys.

      This story is horrifying and aside from Jani’s ‘treatment’ one wonders why her family and the professionals working with her think it is acceptable to invade her privacy in such a way. That in itself disturbs me, never mind what else she is being subjected to.

      To counter-balance such a disturbing story I felt it was crucial to highlight the work of the Hearing Voices Movement which offers such a humane and hopeful approach and a viable alternative for Jani and other children like her, who are suffering because of scary voices and visions. There is always hope.

      Jacqui

      Report comment

  2. While reading “Blue-Eyed Tree Frog”, thing in the left side of my head said “cognitive dissonance”.

    I’ve never heard of cognitive dissonance so I had to look it up to see if it exists. It does.

    I cannot claim “cognitive dissonance” as my own thought. It distinctly is NOT my own. How’s that for a real-time example of mental hearing?

    I don’t know if cognitive dissonance is “professionally” observed in Jani. I think it would benefit her greatly, and she would do remarkably well, to prescribe the treatment of: study linguistics. The greater her vocabulary becomes, the better she will be able to know and understand her own mind, and effectively communicate what she experiences to others.

    Report comment

    • Interesting how those words came to you – from the collective unconscious perhaps?! – but I wonder who is actually suffering from cognitive dissonance. Is it 8 year old Jani who seems to be able to articulate and communicate about her frightening experiences so clearly, or is it the adults around her? How do they fail to see and hear the meaning in her experiences, rendering them a symptom of schizophrenia instead? I wonder if it is they who need study further…

      Report comment

      • I love Jani. I’m fascinated by her. I wish I could meet her and talk with her.

        I believe in my heart that she really was born exactly as she is. I think her mind / psyche very much IS a real issue. I don’t know if I’d call her “schizophrenic” but I would call her Psychic (psychic, meaning – her psyche is distinct and remarkable and very active, obviously). Psyche is NOT a disease but that doesn’t mean it is always easy to live with. It can be outright brutal and even Hellish (such is life). There are various states of Psyche. An active one is *psychic*. It shouldn’t be so complicated.

        If she is renaming herself, it seems that “cognitive dissonance” could be an accurate description of what she’s doing. I read that she HATES her name “January” – which I think is really significant and needs to be understood. SOMETHING is motivating her to find a new name for herself. That’s a big deal.

        I don’t blame her family (or the rest of the world) for calling her schizophrenic. As of right now, people don’t know any different. Who could honestly deny the fact that she IS how she is? I can’t.

        To be real honest, I resent the fact that people are trying to spin the “abuse” angle, suggesting that abuse or neglect is what is causing her condition. That is BS. There very well may be some of those issues, but the girl IS born as she is. I think she DOES have something “genetic”. I think she IS a genuine psyche-active person. I don’t see her as “sick” but I do see her as somebody who needs a LOT of support to know and understand what she “has” and how and why she has it. I see her as 100% GENUINE: whatever it may be, she’s BORN that way.

        Report comment

        • I am not sure that people are trying to ‘spin’ anything, just reflecting on what comes up for them when reading and hearing about Jani and her treatment and providing factual information that has previously been in the public domain.

          I appreciate your wish to not blame but seek to try and understand. However I don’t believe in schizophrenia. I think it is a damaging concept and that so called symptoms are reactions, often to traumatic or overwhelming experiences. I also feel deeply troubled by what is really going on here although ultimately, all we can all do, is speculate, muse, discuss…

          Report comment

          • Let’s take a closer look:

            http://www.thefreedictionary.com/schizophrenia

            Do you see where it says

            “2. behaviour that appears to be motivated by contradictory or conflicting principles”

            ?

            Now let’s take that and pair it up with “cognitive dissonance”

            http://www.thefreedictionary.com/cognitive+dissonance

            A condition of conflict or anxiety resulting from inconsistency between one’s beliefs and one’s actions

            It seems to me (with my very basic, uneducated intelligence) that “behaviour that appears to be motivated by contradictory or conflicting principles” and “conflict or anxiety resulting from inconsistency between one’s beliefs and one’s actions” are PRACTICALLY THE SAME THING.

            For the record, I state and declare that I DID hear “cognitive dissonance” inside of my mind and did NOT previously know that term in ANY way, not even “unconsciously” or “subconsciously”. I simply have NEVER heard of “cognitive dissonance” ever before except FROM RIGHT INSIDE OF MY OWN HEAD, LIVE, AS I WAS READING. I was “brave” and “courageous” enough to actually type (publicly) exactly what I experienced (heard) inside of my “psycho”, “schizo” head.

            Hallucinations CAN’T BE CORRECT. About anything. And if they are, it isn’t a hallucination.

            Let the professionals look for “cognitive dissonance” in Jani. If they can confirm that, to support their schizophrenia diagnosis … hold on.

            Is anyone truly interested in actually helping the child? Is anyone truly interested in UNDERSTANDING HER?

            Let’s take it a step further:

            What is her INNER CONFLICT? Here’s a clue: she HATES her name. She is RENAMING herself.

            Why?.

            The inner-world is a REAL place. Lots and lots of activity (on the inside). One more time: psyche is NOT a disease.

            Report comment

          • In reply to mjk: “2. behaviour that appears to be motivated by contradictory or conflicting principles”. It “appears”. To any unengaged observer, like an mh professional for instance. It may also “appear” so to a parent whose need to himself appear as the perfect parent isn’t met by a child who reacts to the parent reflecting the parent’s imperfection. A psychiatric “symptom” is a reaction to life that is taken out of its context with life. Thus the cognitive dissonance doesn’t happen in the person who’s labeled with “mental illness” on the grounds of psychiatric “symptoms”, but in those who label.

            Report comment

  3. This story is all over You-Tube, too and it made me so sad I couldn’t watch the whole thing. I remember seeing this letter to Oprah a few years ago and thinking that this list of suggestions was great. So glad to see it re-posted here.

    It’s sad to think how many creatives, spiritualists, or entrepreneurs in our society are being snuffed out by this stuff. I’ve had to do some grief work around this off and on. What’s helped lately is a Bible verse from Jeremiah about “He will restore what the locusts have eaten.” [No offense meant to Non-christians] Much of what I’ve lost to psychiatry has now been restored in my life. Hopefully we can build a way to do this more often for our brothers and sisters and step-children like this in bondage.

    Report comment

  4. I’ve been following Jani’s case for a while and think her treatment with a mega drug cocktail and her exploitation by the media and her parents is unconscionable. The work with children who hear voices, on the other hand, is inspiring.

    Jacqui, Did they ever receive a response from Oprah? And have you considered sending this letter to the author of the book (Jani’s dad) via his publisher? I do believe he wants to help his child — who I see as creative and gifted as well as disturbed — perhaps, perhaps he would listen.

    Report comment

    • I agree that the exploitation of Jani is unconscionable. It is also heartbreaking that her creative attempts to survive, i.e. the voices and visions that she experiences, have been so comprehensively misunderstood.

      Fortunately, healing alternatives do exist and the fantastic work of the Voice Collective project in London is a brilliant example of this, an approach that I sincerely hope will become more widely available to children like Jani and their families.

      We never received a response from Oprah but as you suggest, it might be worth trying to send this letter directly to Jani’s father. Perhaps he would listen…

      Report comment

  5. Here is the family’s Facebook page: https://www.facebook.com/janifoundation?ref=ts&fref=ts

    I resisted medicating my son for three years. Along with the voices, he had painful tactile hallucinations and frightening visual hallucinations. An array of therapists did not help. He is on meds now, which makes me very sad. However, he is no longer tormented by seeing demons cutting off people’s heads, for example. I’m hoping that the new therapist will be able to help him resolve this stuff. My guess is that Jani’s family is simply beside themselves, as am I. My heart goes out to them.

    Report comment

    • I am sorry to hear about the awful time you and your son have been having. I have met and worked with many families who have been beside themselves with worry about their kids. As a parent I can entirely empathise. That is why I posted the 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices: from our experiences, the less alarmed parents feel, the better the outcomes for their children.

      I hope that your son is able to get the support from his therapist to make sense of the tormenting experiences that he was having. Wishing you both all the best.

      Report comment

  6. Prior to her being subjected to the abuse of coercive-medical psychiatry, Jani was severely abused in her home.

    A few years back, Jani’s father was surprisingly forthright, in writing about this, online; yet, some time ago, he began scrubbing his tracks.

    For example, he removed the following two paragraphs from his own blog,http://www.januaryfirst.org (and then took that blog offline):

    “We tried everything. Positive reinforcement. Negative reinforcement. Hitting her back (I won’t tell you how many people told us that all she needed was a good beating). We took all her toys away. We gave her toys away. We tried starving her. We did EVERYTHING we could to try and break her. Nothing worked.

    “The violence became so bad that at times Susan and I both lost it and hit Jani as hard as we could. We hit in impotent rage.
    We got a referral to a psychiatrist. Two months later, Janni was hospitalized for the first of what has since been four times, but in truth will be many more times. Today, Jani is no longer a brat. Today, Jani is schizophrenic.”

    Source:

    http://bipolar-stanscroniclesandnarritive.blogspot.com/2009/07/los-angeles-times-reporter-defends.html?showComment=1314932254631

    Report comment

      • Jacqui,

        If the exact nature of Jani’s current ‘treatment’ can’t be discovered by reading her father’s new book (which I have never read, but which I know is now being featured in the Guardian), I believe we can, nonetheless, reasonably surmise, that Jani is a young person whose parents are – with the help of psychiatrists – drugging her behaviors continually; for, in the course of their seeking help for her, years ago, Jani’s parents came to developing a ‘mental health’ lobbying platform, vis–à–vis Jani’s mom (Susan) hosting her own weekly radio show called, “Bipolar Nation,” and by way of Jani’s dad (Michael) often co-hosting…

        Both parents are outspoken, in their opinions, on that show (as, of course, most radio show hosts will be); sadly (for their kids), not infrequently, they are inclined to broadcast their children’s ‘mental health’ issues on that show. (That said, now, hesitantly, I mention the link to their free podcasts):

        http://www.latalkradio.com/Bipolar.php

        In your comment, above, at January 22, 2013 at 7:50 am, to Chrys, you say:

        “This story is horrifying and aside from Jani’s ‘treatment’ one wonders why her family and the professionals working with her think it is acceptable to invade her privacy in such a way. That in itself disturbs me, never mind what else she is being subjected to.”

        I share your sense of horror. (Indeed, *never* do I cease to be troubled, by the latest example of parents publicizing their kids’ ‘mental health’ issues; personally, I struggle, wondering: is it OK even to discuss the most trivial matters pertaining to my child’s life, online? Hypothetically speaking: can I even mention what I may consider a disappointing report card, in good conscience? I think not. (But, of course, mentioning ones child’s doings, from a position of relative anonymity, might not be so bad. I’m uncomfortable with it, when people do it; but, the anonymous approach may be somewhat more acceptable.) Certainly, I’d not want to be one to attach *any* kid’… read more

  7. First of all, sorry I did not know about the possiblity to sign the paper. In my daily work I meet far too often children and young people coming to our place with psychiatric diagnosis and prescriptions of drugs. Fortunately I am often part of a change, I have the joy to work with people who believe in other things, people who believe in the importance of being present and participating in a relationship to try to find out how come it is like this. And there are answers, always! Not necessarily easily found, not necessarily comfortable, sometimes very painful issues to discover, sometimes with a lot of guilt and sleepless nights. So it is important to be there together with the child and his / her family (if possible). There are no other way. It can never ever be acceptable to define a child or a young person having a psychaitric illness without taking into account the context, life conditions, family, society, etc… And sad to say, but have also very many times met children and young people getting worse in a “professional” context with its manuals, methods, and different criterias. I have a dream about a different approach, about a knowledge which include many people, also the professional “helper”, a knowledge which has to do with trust, hope, taking a responsibilty and to find ways to collaborate.

    Report comment

    • I agree Carina that there are ALWAYS answers, even if they lead to some very painful, uncomfortable issues. No experience, nor person is utterly incomprehesible, if we are simply willing to be with people, relate to them and really hear what they have to say. Sadly many ‘treatments’ actually make matters so much worse which is a travesty. Fortunately, there are a growing number of us who are expressing our outrage at such misguided attempts to help and who also have the knowledge and experience to advocate ways of working collaboratively that really do help.

      Looking forward to collaborating with you and others in Sweden in April, to help spread the word about what works!

      Report comment

      • Yes it will be great to see you, and to listen to you of course!
        This morning on my way to work I met a mother and her four years old daughter on their way to day care (or how to call it in English). In the beginning of last autumn a colleauge Hanna and I met the girl and her parents who at that time were in a chock since a psychologist after meeting the girl ONE time had told them that the girl has a very severe autism and has to start medicating and go through psychological tests. They were also told that the girl will never be able to live “a normal” life. Well, to make a long story very short, we have seen the parents during some months and listened to their story over the last ten years and how different things have happenened in their life, and not to say that everything is totally ok by now, but they again trust their own feelings and experiences towards the daughter and have decide not to go back to child psychiatry. Welcome to Gothenburg!!!

        Report comment

        • This is an all too common experience, in many parts of the world it seems Carina. It just makes me more determined to continue to raise awareness of the harm caused by those who are supposed to help, and of the many excellent alternatives that are developing across the world. This web site is a fantastic way of spreading awareness of both of these crucial issues. Pleased to ‘meet’ you here – very much look forward to meeting you in Gothenburg in the Spring!

          Report comment

  8. Jacqui,

    This family has received a great deal of publicity in recent years, and it is difficult to avoid the conclusion that the parents have encouraged the child’s dysfunctionality for their own gain. As long as all the criteria for these so-called illnesses are behavioral, this kind of thing is almost inevitable. Most commonly, this takes the form of parents coaching the child with a view to obtaining disability income. But more exotic versions can and do occur.

    Philip Hickey, PhD
    http://behaviorismandmentalhealth.com/

    Report comment

    • Parents coaching children in order to obtain disability income isn’t something I know much about but I can imagine it happens. As to whether so-called illnesses arebehavioral is open to debate. It seems to me that troubling behaviours are the manifestation and consequence of overwhelming emotions, reactions to the environment, impact of significant relationships etc. Simply switching the frame from illness to behaviour isn’t the answer for me. A focus on it may be part of what helps makes sense of the whole person and their experience…

      Report comment

  9. I so appreciate this, Jacqui.

    I have been suicidally depressed many times, but I have never heard voices. I have talked with voice-hearers in the hospital very matter-of-factly, but I never thought about this approach until I heard of HVN, just a few weeks ago.

    Your post is enlightening. I am a peer specialist, and I am so grateful for the information I get at MIA. I am in your debt.

    Pam

    Report comment

  10. I wrote about Jani as an exams project and did a lot of research as her father has used her to promote his blog and later the book based on his blog – and to beg for money. It is one of the most tragic public exploitations of a child I have ever been a witness to. He has been investigated for sexual abuse of jani but never convicted. He has himself written about the violence he and Janis’s mother exposed Jani to before he found out that that was not a smart thing to do on the net. He becomes infuriated if he is criticized on his blog and no form of critique is tolerated so no dialog is ever entered into unless it is basically praising especially him. There are clips when Jani is just weeks old and he is talking about her hallucinating! I concluded after reading, watching video clips and listening to their radio program that we have here a case of what could go under the heading of Munchausen by proxy syndrome. The interview with Oprah btw shows clearly (my opinion) that Oprah is out of her depth and that she believes Jani is ill and addresses her as such.

    However what is also dreadful is we have a psychiatric system prepared to drug Jani to the gills and ignore the family life which in Jani’s case is plastered all over the internet, though now-a-days it is carefully planned and orchestrated. There are clips where it is so obvious Jani is trying to please mom and dad (and the camera) by waving a plastic knife around so that the staff can say she needs to be admitted as violent(!)

    Thanks Jacqui for bringing the plight of this poor child to our attention again, and who knows maybe one day she will read and hear that another truth also exists…

    Report comment

 

A Poem for My Aging Mother

My poor mother is suffering from dementia at 87 and it is very sad and difficult to watch her decline. I will write more if I can at some later time about it but for now I want just to post a poem I wrote for her years ago and then rewrote completely recently.

 

Over the years we have had some troubled times. Because my father disowned me for some thirty-five years, she had to make a choice between him and me, essentially, and the one she made was obvious. I was out of the house by then and I am not sure it ever really occurred to her to make any other choice, but who knows? I do not. In any event, I bear her no bad feelings for this, I do not think. Though had I been “her son” with schizophrenia i believe the outcome and her choices might well have been very different, as they always were when it came to my brother.

 

But that is water under the bridge. The choice was made and I was sacrificed. That said, perhaps it is a good thing, I dunno. If she had given up her life for me,  I might never have developed any independence at all, or written the poems and books I have.  I might never have discovered my art abilities. Who knows? No one knows, of course, what their “alternate futures” might have  held. We can only work with what we have and the cards we are dealt. We can’t make others choose on our behalf. Much as we might wish them to.

 

I never wanted my mother to give up her life for me. I felt guilty enough, just for being the way I was. The worst thing in the world would have been for her to make any sacrifice for me at all. For anyone to have done so would have been damaging to me. So I am glad that everyone went on their way, because otherwise I would have had to kill myself in apology.

 

I could say much more but I am sleepy so without further fanfare, the poem:

 

PHONE CALL TO MY MOTHER AT SIXTY

 

I have not thought of you all day.

A March wind rattles the wires,

wishing you a belated happy birthday.

You are sixty, my grandfather ninety,

my younger sister thirty,

but if there is significance in that,

a syzygy, some conjunction in the heavens

I have yet to figure it out.

Your husband answers, my father,

aligned against me north-north,

between us implacable silence.

So we sidestep confidences,

suspecting he is listening in

until in the distance the line clicks

like a playing card in the spokes.

But even so, how carefully we speak,

expelling words of fragile allegiance

each of us pretending not to know

what the other is thinking.

 

Suddenly you confide, you feel old:

the baby is thirty, you don’t like

your new job, you miss teaching,

the exuberant children, their bright

and lazy charm. There is so much to do,

so little time. Before it is too late

 

you want to captain a boat to the Azores,

learn cabinet-making — you have the tools,

a lathe, a power saw, inherited from your deaf father

who never heard you speak

but built you a fabulous dollhouse

and taught you, at ten, to sink the eight ball.

 

Could I ever confide that I, too, feel old? At thirty-five

you had a husband, four children,

a career in the wings. Older by a decade, I rent

a single room and have no prospects

beyond the next day’s waking.

Instead I carefully quote Joseph Campbell’s

advice: follow your bliss.

And I remind you Aquarians always step

to a different drum’s thunder.

You like these clichés,

and laugh, repeating them, then you say

with a sudden spontaneous sincerity

that moves me how good it is to talk with me.

I think of all the times we have not spoken,

how at sixty it would be nice

to have a daughter to talk with

instead of friends wakened in the night,

reaching over husbands or wives,

to answer the phone, “Hello? Hello?”

their wary voices expecting

death or disaster.

 

You are tired, you say now,

you have an early appointment.

We promise each other a date for lunch.

But I will not call for a long time.

Or perhaps I will call the next day.

Before you hang up, you let slip

it’s your wedding anniversary, one

marked by some mundane substance —

stone, carbon, foil, rope.

Should I congratulate you, I wonder,

or console you? Finally, we say good-bye.

Across the wires I think I hear

your voice crack, but it could be the wind

or a bad connection.