angels in our countryside

in disguise, the blessing

AS i drove along the country side road home, the winter sky held daylight a little longer. a church i passed with a reader board said, "hope is the anchor for the soul".

the sign changes with weekly Epiphany, from someone who takes a walk to the side of the road with plastic letters in hand, after being given the phrase of the week. this week it reminded me of this blessing that has been given in disguise.

based on hope and at times feeling as if hope never existed. a conflicted being, driving along the road somewhere, in the Universe.

what is life, i thought as i looked up at the trees. making it, surviving? eternal struggles? a lifetime of conflict resolution?
----


give me a reason, i demand to God in my thoughts as i drove along the road.

give me a reason for the refinement as gold, for the trials. i wanted a definition.


it's the blessing in disguise

the thing feared most begins to harbor the hope and brighter days. in this situation, it was the fear of the institution, based on previous experience, it was a concrete fear, not an abstract, or irrational fear.

forced into a situation, that seemed bleak, had a history of painful outcome.



it was, like diving into the deep end head first, hoping there was enough water to catch the body softly when it hit bottom.
---

there is something almost healing in power, by action

when walking with my daughter yesterday along the paths and woods, and space where patients once walked decades ago. i feel somehow this was giving back to them. giving back the freedom they lost to being locked away in an institution built in the 1870's, walking along the dog park in 2010, alongside the cemetery where only recently, graves with numbers are beginning to be named. many death years are 1934.

there we stand, with this wonder. my daughter. advocating fiercely for outside time for weeks, there we stood yesterday, in light rain and jackets petting dogs. beautiful irish wolf hounds, small dogs. all giving love to my daughter, her hand reaching down to pet them gently.

--
one of the first times we were given a pass to go out this week, we got ice cream. i looked over my shoulder at her sitting in the seat behind me in the car.

her eyes were closed, and she had a smile on her face of sheer delight and joy as she licked the spoon of ice cream.

--

happiness and freedom in an old setting, but not for all patients

i hope, before too long there will be others able to walk to the dog park, across the street, where the old farm once was, now a 22 acre off leash dog park, where dreams can meet reality, where hope meets despair, where blessings come in disguise.


*i began this post on friday and finished it on sunday morning, referencing yesterday's (saturday's) 2.5 hr long outing to the dog park where we met irish wolf hounds, and found a school to play basketball, and even went inside a store to browse. another outing happens again, today, on sunday. it has been truly wonderous watching my daughter gain freedom to go out with us, see her smile and enjoy the freedom she so richly deserved. regretfully, not all patients have this permission, and it is difficult to know that there are dozens, and dozens of patients just across the street, when at the dog park. i so hope things can change, for others. that's a big dream in this situation.

golden moments

today was the second afternoon outing, where 22 acres of open space of freedom to pet all the dogs in the world you want to, walking across meadows with old trees, and admiring ducks and geese on a lake. top it off with ice cream and you have one of the best days in the last 5 months for my daughter.

with permission from the doctor and team, she now has regular outings with us scheduled, and yes there was a lot of smiling today from all of us.

just across the street, is wide open space, where we walked along the old farm buildings that used to be the dairy farm patients worked at "in the old days".

it now boasts a unleashed dog park. guess what dog will be going on a day pass soon? today, my daughter met lots of dogs, pet them and all i can say it this was the best day! when the doctor asked her what days she wanted to go out on..."friday, saturday, sunday, monday". you go girl, you go!

pearls and gems

a gem of a diversion

from pearl jam, just breathe

and another gem from ray bradbury

"If we listened to our intellect, we'd never have a love affair. We'd never have a friendship. We'd never go into business, because we'd be cynical. Well, that's nonsense. You've got to jump off cliffs all the time and build your wings on the way down. "

wing building

portabella mushrooms, Roma tomato, Gruyere cheese and sour dough bread. this is what dreams are made of.

after sleeping last night, as if the world stopped and my anxiety level decreased to the point of 'not conscious', i woke up feeling almost human today. a morning jaunt to the dog park, then off to the market. as i drove, the sun shined down on me as if it never did before.
--

yesterday, was a brilliant day, though a long one.

the first time taking my daughter outside of a locked facility for an outing after 5 months.

--
this girl is back

perspective: silent for over 2 years and it was like taking a quiet alzheimer's patient on drives, and eventually into stores and restaurants, and more. time. it took so much time. i had forgotten the sound of her voice.
--

yesterday, she got out of the car at the lovely waterfront area we found, just a few minutes away from the hospital.

she stopped and laughed out loud, when she saw her face in the car window reflection. admiring her red knit cap, she appeared confident. i loved watching her look at herself 'in the mirror'. she is back, and she is full of energy. i haven't had this daughter back in years. "this daughter".

it has been a long time. for many years, i struggled to remember her voice, and at most i would hear one or two words, and she energetic and participating in life.
--

about 90 minutes

on the doctor's ordered pass

we took her to the nearby dog park, she ate a treat from McDonalds, and saw a beautiful view and breathed in sea air. then she saw the basketball in the back of the car.

she asked for the basketball, and then she dribbled and bounced with gusto, all around the hospital parking lot, unlocked and free, and she was having a good time.

i dare to say, so i will, that she defied the first ward doctor's theory of her.

--

she played, had fun and shot down all of the reasons why they said she couldn't go outside.

--

back to the mushrooms

cooking is not only an expression of love, but a diversion. i will often create the recipes as i go, while spending time in the market, or while driving which gives me a place of solace.

almost like a garden.

--

IN our unusually warm January weather, my spring bulbs are rising from the soil.

i took a nice walk through the woods in the afternoon. the dog made eye contact with a chipmunk and a woodpecker making their way along the trees. the sword fern are holding vigil.

the bog harbored sounds of cheerful birds. the trees, leafless hold their branches up as arms reaching toward heaven.

---

my wings aren't perfect, hell they aren't aerodynamic either

"If we listened to our intellect, we'd never have a love affair. We'd never have a friendship. We'd never go into business, because we'd be cynical. Well, that's nonsense. You've got to jump off cliffs all the time and build your wings on the way down. "

-ray bradbury

unlocked beauty

this is what she was able to view on the outing.

the scent of the sea air and the late afternoon sun were the backdrop.

this is the beginning of building up confidence and inner strength.

this is healing power at work, beyond the locked psychiatric ward doors.

it was a good day.

From Evidence-based Medicine to Marketing-based Medicine: Evidence from Internal Industry Documents : Journal of Bioethical Inquiry

From Evidence-based Medicine to Marketing-based Medicine: Evidence from Internal Industry Documents

Glen I. Spielmans1 and Peter I. Parry2
(1)
Department of Psychology, Metropolitan State University, 1450 Energy Park Drive, St. Paul, MN 55108, USA
(2)
Department of Psychiatry, Flinders University, Adelaide, Australia

Abstract

"While much excitement has been generated surrounding evidence-based medicine, internal documents from the pharmaceutical industry suggest that the publicly available evidence base may not accurately represent the underlying data regarding its products.

The industry and its associated medical communication firms state that publications in the medical literature primarily serve marketing interests. Suppression and spinning of negative data and ghostwriting have emerged as tools to help manage medical journal publications to best suit product sales, while disease mongering and market segmentation of physicians are also used to efficiently maximize profits. We propose that while evidence-based medicine is a noble ideal, marketing-based medicine is the current reality. " (full article pdf here).


Keywords Evidence-based medicine - Marketing - Marketing-based medicine - Pharmaceutical industry - Olanzapine - Quetiapine (Seroquel, Zyprexa)

----

VIA "Jack Friday" 's comment at Pharmalot blog:"AstraZeneca Pressured Medical Manager over Seroquel".

Read more at Furious Seasons"AstraZeneca Exec Was Pressed To Lie About Seroquel Weight Gain":

"'In the end I was put under quite a significant amount of pressure by the marketeers to sign off claims with regards to the lack of weight gain and I was unwilling to sign that off. The marketeers made it clear it could be career limiting for me," Mr Blenkinsopp added.'"

and at PharmaGossip, "This is a must read!".

Addendum:

VIA Pharmalot blog comment section, HERE:

The authors of the paper chime in as well as the AstraZeneca employee who was pressured by the Seroquel marketing team, in their own words, candidly speaking.

From John Blenkinsopp, former AstraZeneca employee:

" I am the ex-AZ employee who spoke on the recent BBC File on 4 radio programme.

http://news.bbc.co.uk/1/hi/health/8478924.stm

I was asked at the time to “sign off” promotional claims for Seroquel in the UK which I believed didn’t reflect the totality of the data.

This I refused to do.

I would like to congratulate Drs. Spielmans and Parry on a fine piece of work.

The release of the legal documents pertaining to the US litigation last year was the first opportunity I had to piece together the shenanigans my US and HQ colleagues were up to.

Once again - kudos to Spielmans and Parry for their forensic dissection of this grey literature."

--John Blenkinsopp, former AstraZeneca employee

this isn't your average rollercoaster ride ticket

let's try it again, tomorrow another pass has been issued, and it is less restrictive. the advocate gets all due credit for making the phone calls today, and working with the team. all parties involved want to make this work, thankfully. so let's see how it goes.

the sisyphean task

could be described as an eternity of frustration, remembering the myth of Sisyphus shoving the boulder up the hill only to watch it roll back down, for eternity as part of his punishment.

i may not be Sisyphus, but i am worn out.

the fatigue from the constant careful watch over my daughter's care the last 5 months, is beyond exhausting. it becomes emotionally draining and your body is physically shot. you wake up, and the stress is there. the days of long drives, the court dates, the discussions, the 5 months of 4 separate doctors, the 5 months of 4 separate doctor's staff and treatment teams, discharge planners and between to counties, makes a head spin at the thought.

it's been 5 weeks since her transfer to this new hospital.

this increased driving distance, and travel time, across several freeways, it's grueling, and daunting.

but, my daughter gives the energy to the mind, because afterall it is her, not me who is there. she needs her support and needs help communicating, and more. the discharge plan of course is being prepared, at least one hopes so, because immediately upon arrival everyone should have a plan of action in place for the future.

yesterday, the defeat felt when a planned outing that came after a long and important meeting, fell apart. nothing was ready to go, no action had been seriously taken.

i could walk in there as a mom,like at home and help get the shoes, socks and coat ready, or look in her room to get them, but i am restricted as much as she is there. this is afterall, a locked psych ward with other patients and i cannot go just anywhere i want, thus my reliance on the staff, as much as my daughter and the team relied on the staff to make it work. simply put, it isn't my job, or i would work there.

we have a special need person in a situation we are trying to make work, and to prompt my daughter for nearly the entire time the pass was to be, to get her coat based on believing it was in her room, giving her space to process and think about going outside, at that point was my job, and what i did. i prompted, based on what i thought was in place.

to have someone tell me the coat was in fact never there, well you know it feels like a smack in the face, a let down and i am tired. i didn't sleep well, the entire system beats a person down so hard it's amazing i have the stamina i do. i say that, knowing it could sound arrogant. it is not.

this, this system. bouncing people around, from doctor to doctor to hospital to hospital from year to year over a decade, well, let's say i could write a book about just that. each hospital, each doctor, each set of medications given, each year, each diagnosis.

--

part of taking care of myself is to take a break. today was a planned break for me, i did that and told my daughter yesterday i was taking a day off and would be there tuesday, knowing we had the walk, i thought i better get my batteries charged a bit. one day off in months, knowing things were running smoothly, no meetings, no leftover business, no phone calls looming for ambulance transfer, no court dates, no court testifying....just today, a time to just be.

yeah, i hope another pass works the next time, because i am tired, but it's my daughter that is the person of focus. i try to write, at times how this makes me feel, so others might understand that it is not easy. but, it's my daughter who is locked up.

5 weeks to finally get her shoes and coat to go to the enclosed area. 5 weeks to get a pass to walk outside. i wonder what the next 5 weeks will encompass. i wonder what the next 5 months will. will this ever resolve, or will this boulder roll back down for another decade.

"i think i'm going to cry"

i said, as my friend and daughter's advocate sat at the table in the visiting room.



--

this is how it feels, trying to be brave and stifling emotions and keeping the pace, as an advocate for my daughter. feeling the surge of tears that are just not allowed in that situation. i wasn't disappointed for myself, it was for my daughter.







yes, imagine she is reading prompting from us in words and hearing the prompts. she was pacing, and nervous and she couldn't tell us what was wrong, and after coloring and talking and her pacing and then wandering to a tv room with a radio on, her world was grasped by the music.







you try and get behind the (her) behavior, the assessment of the actions, and if i knew from the entering into the building how her day began, or how the coat was in fact not an option, (the shoes? who knows, they weren't on her feet) and how i cannot, as a mom go take over and look in her closet like i might at home, because of privacy rules and respect for her roommate, my hands are tied and dependent on who is in charge of her then and now.







lack of communication, lack of knowledge of how to work with my daughter, whatever we call it, the day was planned in a massive meeting days ago to give her time to process the thought. to plan for the day, and we did. she did too.







here we were doing our thing, trying not to pressure her to go outside, just giving her the choice, the option and like fools telling her to go get her coat and shoes.







--



one day this will not be a roller coaster, based on a system that reserves the rights for no one.







one day, i will not worry about crying in a visiting room, one day.







one day, there will be a smooth transition, not just a scattered post over 5 months of "wow isn't this a great day!"







--

how'd the walk go?

Doctor's orders for a walk, on the books, in the chart for designated time today

---


1. upon arrival a staff says "i've been telling her to get ready all morning".



i observe Linds in socks, no coat and notice her locker/closet key is not on the string around her neck. i ask her where her key is so she can get to her closet to get ready for the walk.

2. same staff walks into visiting room, saying the key was missing, someone found it and voila! here it is.

i hold out the string with the closet key on it and Linds leans her head forward for me to place it around her neck. we prompt her again, verbally and with written note to:

a. get coat
b. gets shoes
c. get ready to go out on the walk

after 90 minutes of Linds appearing to be anxious, pacing and not getting her shoes and coat, we decide to give her a heads up that we will be leaving soon, because in fact the designated outing time was going to run out.

3. 20 minutes left until walk outing pass expires, and i was told that in fact her coat was in the laundry.

--

How to get someone like Lindsay ready for an outing 101

1. make sure when you prompt her to get ready she actually has the key to her closet and the items to put on such as shoes or the coat, other wise what was the point?

Lindsay, is sporadically speaking for the first time in years, is presenting predominantly as autistic, has been acknowledged by the team, and the on duty staff has seemed to not been briefed on how to get a complex patient such as Lindsay ready for a doctored ordered outing. it fell apart, because too much was expected of Lindsay, prompting her to get ready without a key to her locker and knowing the coat was in the laundry?

Upon arrival if i was told the coat was in the laundry I could have driven to a drug store and bought a cheap jacket, but that is not the point. How to get your patient ready for a doctor's orders outing with the patient/client needs met with appropriate methods.

The coat is in the laundry, i'm seriously shaking my head now, because we prompted Linds for 90 freaking minutes to go get her coat on and it wasn't even a possibility.

That, is undermining a very big day. what the hell. again, expecting a statef funded institution to do the impossible, for 500$ a day or so charge per patient.

Pay me, that's right, pay me $500 dollars a day, designate my house as a "housing", give me staff, respite and all of my daughter's needs met, plus the doctors, case manager, driving to appointments, to blood draws--oh wait, i already did that! she needs support, she is in the wrong system, she is stuck in a locked mental hospital as a disabled individual, come on, let's keep moving this mountain, just put on your thinking caps before going to work, dust off the license you earned to work out on the floor, oh wait is that required for hiring? i digress, this is a place for me to rant, so be it.

she deserves and has the rights to services and has for a very long time, if for example this is how it works, i took her home she loses all services and housing. i think she deserves a chance at independent living, and many people cannot imagine what i do for her, is advocate as a mother. she is their client, and she needs a voice.

the beginning of the misdiagnosis discussion : it was not childhood bipolar in 1999 and it still isn't, a decade long journey part one: a ramble

thanks for all of the excitement, and thoughts here everyone, it's really nice to have this support. i left this comment in a post below, which addresses many people's questions. there's much more i can expand on, but for now: (keep in mind this has been a decade of searching for answers and watching her react to psych meds, and having one psychiatrist tell me "face reality", besides telling my daughter she had a disease that would kill her if she went off meds by age 18. the childhood bipolar paradigm based on a medication treatment plan...any time i questioned it or the meds i was cast aside by doctors with degrading and condescending attitudes and words. forging ahead anyway--here we are today, with a small glimmer of hope that she will finally have some peace and hope she can recover from all of this.
-----

PANDAS was discussed thoroughly as all testing, genetics lab at childrens , lots of stuff over the past decade i pushed for, got the confirmation of depakote resulted polycystic ovary syndrome confirmed by a well known psych. (body damage from a drug not needed)

And, yes, PDD/aspergers at age 17 was presented to her in a meeting and even she agreed with it. self taught reader by age 4, walking encyclopedia, tested at age 8 college age 29 reading comprehension, etc.

she assisted autism spectrum kids in high school at the junior high when she was 17 and came home one day and said "i'm like them".

what we see now is someone who was tossed into a traumatic adult locked psych ward system on her 18th birthday sent there from childrens hospital..due to turning 18, and i fought for her to be returned to childrens on an exception which took me 9 days. she returned MUTE. (2006)

i asked for trauma to be addressed, for therapists to come in and find out what happened. it was a rough ward, and she returned bruised and all they would say was "the one concrete thing we know is she was over-drugged with high doses of ativan".

she is paradoxical to that drug and i had told the doctor that. they shot her up with drugs so bad and so did all of the hospitals...after the one doctor said PDD/aspergers, the adult psych system drugged her up hard, high doses and at one time was on 19 pills after a discharge.

all of that leads us to today: a person who some believe suffered trauma, trauma induced psychosis, and brain damage from the drugs, each doctor having their own "cocktail", imagine me with these ppl telling them the drugs are her problem.

finally got her down to one drug--clozaril the last 2 years, knowing that if she wanted to choose to lower it or remove it she had to decide and participate, and being mute the last 2 years were difficult to say the least.

she started talking in august 2009, said she feels like she was coming out of a coma.

so one day at a time and now it's being acknowledged that she again, was drugged for no reason.

thankful for this new doctor and i hope he does what he said he was going to do and find an super top doc in my daughter's pdd/aspergers category, who will, like him see her for who she is, and how drugs "are not designed for people like her" but trauma induced psychosis is there.

the police woman who handcuffed her face down in the gravel this summer triggered this episode, and all i can say is i am not done addressing that entire event.
---

if you click on the labels below, you can see my series, where i chronicle the evolution of a diagnosis, and all throughout this blog, will read about buried data and research skewed for profit from drug industry, about Zyprexa and Risperdal and about Joseph Biederman and his push for the diagnosis, the 4000% increase of pediatric bipolar and how my daughter is in fact, a poster child for this American tragedy, based on profit by drug companies.

Children being placed on these drugs is dangerous, and there are STILL no long term studies done for efficacy use or safety use in growing children and their brains. my daughter suffered a decade on these drugs, at one point gained 100lbs while in junior high on Zyprexa....she deserved so much more than this.

a saturday poem

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim

Because it was grassy and wanted wear,

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I marked the first for another day!

Yet knowing how way leads on to way

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood,

and I,

I took the one less traveled by,

And that has made all the difference.

-robert frost

---

this is a photograph taken on a walk a year ago. life, has many choices offered to us and many times we do not know we have chosen a path until we are walking on it. human beings at times are mere tumbleweeds, searching for a place to bloom.

You go Girl!, you go!

i stopped by the dollar store and bought more crayons and a coloring book, chips and a soda.

already packed from home were 2 snack packs of cookies/crackers labeled with her name on it, to give to the staff for her 7pm snack box.

arriving with an activity in hand, just adds ease to a good visit.

wow, was she happy today. she is interacting with peers, and talking to the staff about what she likes and they have connected with her, with the dog and horse book and magazines. everyone seems pleased with her progress unwinding and relaxing in the unit. so am i.

"you visit me! you visit me! she said over and over, while laughing and smiling.

"yes, i do visit you".

and then here came the shoes from the staff for a fitting! once on her feet, she imitated tap dancing and was so excited, i said, "are you going out at the 4pm fresh air break now?" and she agreed, was very happy.

she ate potato chips and colored, said a few funny things that just made me laugh out loud. when i asked "hey are you excited about day after tomorrow going outside on a pass out of the hospital?"

(keeping her grounded with days of the week, etc. prepping her for the outing, which will be a big deal after being locked in 2 hospitals since august, so we are taking it slowly with care not to overwhelm her, walking on the grounds for the first walk)


here was her response

woooo hoooo! and that is a quote from her. lol

--

giving her a heads up about the time, i prompted her to put her things away, i asked her if she had the key to her cupboard and she did, and she went and put her slippers away and the coloring book, etc and came back and lined up and before she went out they gave her a new coat. i had told her i would see her tomorrow, she knew i was leaving when she went outside, that was the plan.
--

i walked outside and took a deep breath of fresh air, looking out toward the open space of trees and the late afternoon sky.

one of the only parking spaces available to park when i had arrived earlier was near the enclosed outdoor area, and i saw her from a distance as i left. she was walking pretty darned confident in those shoes and coat.

i thought to myself, "good for you, Lindsay, good for you!".

--

random music choice for this post

got in the car and caught myself smiling while driving away down the road. this oldie but goodie song was on the radio. it fit the speed of her walking and the fun tone of the day with her, the lyrics, well, could be a bit ironic, though it's the music that grasped the moment, as i drove my old junk heap home.


listen while you read, and imagine my daughter outside. she loves music. she's going to get stronger now, i've seen it happen before.

the pretenders

----

120 miles, 5 hours. for about an hour or so visit.

--

i'll stand by you, i stand by you.....

Boston Globe article, Judi Chamberlin's legacy of taking on mental health system

VIA The Boston Globe:

1.20.10

Judi Chamberlin, writings took on mental health care


(in part)

"Described as irreverent and fearless, Ms. Chamberlin’s writings about the dehumanizing treatment inside mental hospitals helped galvanize patients to become “psychiatric survivors’’ and changed social attitudes about their future prospects."

AND

"Ms. Chamberlin, who was diagnosed as schizophrenic, contended patients have the right to make choices about their care, and she argued that their using those rights was integral to recovery.

She liked the name “Mad Pride,’’ and her book became the movement’s manifesto. “Instead of a pejorative word, they were saying ‘No, we’re proud of who we are and so be it,’ ’’ said Robert Whitaker, author of “Mad in America,’’ which chronicles the history of America’s treatment of the mentally ill."

Ms. Chamberlin, who grew up in Brooklyn, first sought help at a hospital but was quickly swept into a series of psychiatric stays. She was committed to Rockland Hospital for two months.

“The experience totally demoralized me,’’ she wrote. “I had never thought of myself as a particularly strong person, but after hospitalization, I was convinced of my own worthlessness. I had been told that I could not exist outside of an institution."
--

Read further about Judi Chamberlin in my recent post, which includes links to other blogs writing about Judi and her amazing, inspiring life.

Judi Chamberlin,humanitarian, activist and psychiatric survivor dies, but her voice will live on through all of us. That post also hosts a link to a living memorial page dedicated to Judi.

the crystal glass

this was written in April 2007, at the time she didn't talk and was in as an extreme decline in written word ability.
---



"The Crystal Glass"


"When you are a segment to life then you will be young then you, will be forever young as well. Did you know that you are able to be a candidate to the note of life but not because you are a small portion of that. Did you know that inbetween the lines it is the most."



~By Lindsay.

copyright@2007

a special thank you to Philip Dawdy, journalist and author of Furious Seasons

A special thank you to Philip Dawdy, journalist and author of Furious Seasons for supporting me and my daughter, with much discussion and links to my articles over the years . always keeping the spark alive for questioning the Childhood Bipolar Diagnosis paradigm and the medications young children, like my daughter were and are being prescribed. Antipsychotics in particular are potent chemicals, and frankly I am grateful my daughter is not suffering more body damage as a result. (Depakote has been confirmed as a permanent damage via polycystic ovary syndrome).She currently has a thyroid issue being addressed also.

From this post on Furious Seasons "Cymbalta Hand Soap, Zyprexa Cosmetic Bag, And More!" Dawdy says this:

.."For those of you who don't know, her daughter is technically diagnosed as psychosis NOS and is one of the most profound cases of mental illness I've ever run across. Her mother, who has fought heroically for her daughter's rights in the system, is beginning to lean towards autism as the most sensible diagnosis. The docs haven't gone there yet, but then she's usually ahead of the docs.", May 2008

Thank you, Philip and especially for your most recent writings about Lindsay, and the mental health system, outdoor time and everything. Keep up the good fight, the recent inpatient victory for Lindsay was one step, one shining light in this world of pharmaceutical industry information and exposure, and one small step toward raising awareness about medicating children at a young age, based on a diagnosis theory, one that we know has no medical basis for use of these medications.

stop by his blog, and give him a thank you, because he gave me a voice many years ago on his blog, which inspired me to write my own. hit the paypal button on your way out, on behalf of my daughter, who via writings by him and many people has been able to have a voice in this world, in a mental health system full of injustice and indignities, while mostly non-verbal.

the sky opened up with bright light

after a decade of advocating for my daughter and she for herself, today the new doctor asked me if i heard of a "savant".

Oh yes, my daughter, he understands who he has met.

as i sit here and write this, there are tears of such relief, that it is difficult to describe, the flood of emotion, all of the places she has been, all of the trauma, the hospitalizations, the recent summer time incident of handcuffing of an innocent young woman, who was non verbal---all was acknowledged today, at the new ward treatment team meeting. this team was compassionate, caring, knowledgeable, respectful and kind. they told me my daughter has endeared herself to them, and they love her.

the doctor said the medications are not designed for someone like her.

did you read that?

read it again. after a decade, finally! we have been heard.

the doctor said trauma such as the police incident can induce psychosis in someone on the autism/PDD asperger spectrum such as my daughter.

the doctor and team are going to work for an appropriate housing situation with peers , and a top notch out patient doctor specializing in aspergers.
--

my shining, witty, brilliant and wonderful daughter has finally been acknowledged and my battles for her over the years about her and the meds have been acknowledged, and on sunday we have a day pass to go outside on a walk.

needless to say, what a positive meeting at the new ward, i am thankful, very thankful for the input and interest they have taken in my daughter, and my quest for a positive discharge outcome.
---

thank you to all of my readers here who have written letters and prayed, and send messages and emails, and love this way. my daughter has many guardian angels in this world, thank you.

i want to tell you, here that many, many days are grueling and many times, i felt like giving up, and the one person i was fighting for is the reason i did not. and the many people i have met over the years are reasons, and i am not giving up and will never give up. and thank you to my friend and my daughter's advocate, for encouraging me to keep focused, and for speaking up on her behalf, for her rights, what a gift.

this was truly a defining moment today, in regard to the care of my daughter and the hope given for a better future and care has been given to us and to her.

Here's to hope, let the bell ring loud and clear.

--
this is a photo of the 50 year old bell i was allowed to ring over 2 years ago when i was at the time finding her a place to live in an unlocked facility as opposed to the state institution where she is now. at the time, a previous doctor had told me "she has no hope". i refused to listen. so, i went to the place where the bell is, and asked to ring it, in honor of my daughter. and it rang, it rang out across the hills. and she was not sent to the institution that time.

--

today, the state institution ironically is where hope, was found. speaking up was at times an uncomfortable situation, but our voices were heard, on behalf of my daughter.

life is a circle, hope is often hidden in dark shadows, or blocked by clouds. i must write here, what i believe and always have, "one voice can and does make a difference", and many voices in a choir are heard.

rejoice! this is a new beginning. the rest will unfold as it happens. i'm living in the moment, oh yes, i am. i can't wait until sunday to go on the walk! you should have seen her smiling face when we told her.

--

i love you, Linds.

The Use of Sunlight and Fresh Air as Contingencies: Hospitals, Not Gulags, bravo! Dr.X

Dr.X, author of a great blog, Dr.X's Free Associations: psychology,great vintage photos and more... has added an important voice into the discussion of fresh air, and outdoor time in psychiatric hospital settings with this great article.

I am posting the article here with many, many thanks.

It is not just for my daughter, (in my opinion) the thought is for everyone, everyone--- ever in this situation.
--

The Use of Sunlight and Fresh Air as Contingencies

Hospitals, Not Gulags

"Stephany (soulful sepulcher) has written extensively about her daughter Lindsay's problems with the mental health system. Most recently, her daughter has been kept indoors for three weeks because she has failed to earn her sunlight and fresh air reward in the level system.


A level system is a treatment program that uses a system of behavioral contingencies -- reinforcements and punishments -- to bring about desired changes in a patient. Contingency programs are based on the operant conditioning paradigm of behavioral change.


While it's important to give contingencies time to work, there comes a point when hanging on to an ineffective contingency can be destructive and cruel. If a contingency doesn't actually lead to change in the targeted behavior(s), the contingency should be reconsidered.

In any case, I seriously doubt the wisdom of using as a reinforcer, anything that itself might contribute to the health and well-being of a patient."-Dr.X

fresh air break, non-smoking only at 4pm daily, and soaring eagles

this photograph is from early february 2009, the place of solace while on a long walk yesterday. regular readers might recognize this photo. no snow or ice on the lake this year, yet. these are treasured moments, where you are in the moment, and not anywhere else.

that was the announcement today, fresh air, no smoking.

then they read the list of names eligible to go outdoors, and last on the list, but not least was my daughter's name.

--
i had arrived about 3:40pm with a chocolate shake, cheese- it crackers, and another container of play doh. as i walked into the ward, someone said, "you've got a visitor", and i saw my daughter who walked to me and i gave her a hug.

it's always SO good to see her, i just want her to know someone loves her and will be there for her. this is a hospital situation, and one must remember, as painful as it is to some readers, she is there against her will, she was committed by a judge. and selfishly speaking, most parents with someone in a hospital are in the "casserole" category, but i digress. no flowers and such in this situation, most people have left, walked away. one person told me "too over-the-top" to understand. i understand.
--
so we are doing, the best we can when we visit, to give respite, a small window of time where all of that is gone and it's just silly, fun and snacks and art work. sometimes, it's consoling her while she is crying.

--
that's the hard part, it's all the hard part, there is no easy way in this situation and i am acutely aware of being vocal and it's aftermath, and i walk forward, because, in the summer of 2005 my daughter told me "fight for me mom", and i am, and i will and i will.

--
THIS 4 pm fresh air break has been confirmed by several staff that it is indeed 4pm daily (not sure of the weekend schedule) and is non-smoking only.

I DO thank the person who came into the visiting room today and gave my daughter a 10 minute heads-up, that fresh air outside time "is in 10 minutes".

She was eating her snack, and had the play doh out and her slippers were on her feet. i encouraged her to go outside. "i've been asking for you to go outside for so long now, that i am sure my photo is on someone's dart board", i laughed.

She laughed at that.

--

she didn't go outside

i can get around the behavior and actions because i know her and knew this would happen, it happened last time, she is simply scared. she also was in a quandary of spending time with visitors or going outside, so tomorrow i told her, and staff that i will arrive after the "4pm" fresh air break, so she won't feel conflicted. i'd like to have a visiting time assigned for us to go out to the basket ball court, maybe that can happen, i've been there before. at least to get her used to it, to the area.

--

WHEN it was time to move wards last monday the 11th, she took my hand and held it as her body was trembling and shaking, and as we walked through corridors, i calmly talked to her that she was OK, was safe etc. i had written a note telling her she was going to ward-# and once the door was reached where it said the number she let go of my hand and walked in there, relieved in appearance.

remember, she was there before and she had a bad situation, she was 4 years younger than her tender age of 22 she is today.

She may not talk a lot but she does not forget, when she talks it is lucid, fluid and she will do that when she is feeling safe and trusts someone now. she has been through far too much for the average 22 year old, the last 4 years hold so many horrific and undignified stories, thus my blog as an outlet and a way to tell her story, that ended up evolving over the last several years, bringing us to---today.

---
I do thank the people making an effort to accommodate my daughter today, these staff have been thrust into a situation where the change of wards was even a surprise and not known event to myself until it happened (and i received the call that morning). i do hope that tomorrow she will be given a "hey it's 10 minutes until outside time, get ready!" again, without me there. i did also prompt her while in the visiting room, to listen for the announcement and her name after that.

---
So yes, she now, after arriving at WSH on 12-21-09 finally has a regular, daily, 4pm outdoor time being offered to her. it's been one month. thank you, to everyone who has written a letter, your voice has been heard and continues to be heard and is appreciated very much. obviously, nothing is perfect, but at the minimum, the outdoor time is being acknowledged, and frankly i do not believe it would have ever been, without public pressure.



she will, in time learn to trust and get used to this new opportunity. it's brand new to her, she will soak it all in. just to have this opportunity was what she deserved and always will as do all of the patients in all of the hospitals she was ever inpatient.

still working on the shoes, but wanted to give an update, and clarify because i think that WSH wants people to know there is a fresh air break offered separately from a smoke break.
--

i will leave commentary to those who want to take this further.

--

my usual tuesday ramble

i saw my daughter today, and was so happy to see her. i miss her and hope we will soon be able to spend time outside and hope we can find a place for her to discharge to. it's been grueling, and speaking out is what i would do for anyone. my daughter is basically non verbal, and she knows i am here for her and she knows that i am fighting for her, always. i do have a headache.


yesterday, i went on a long and really good walk and spent time at a lake watching water birds and ducks, the dog begged for bread kids brought for the ducks. the walk was imperative for stress relief and clearing of the mind.

it's what we did with my daughter all of the time, we took her on drives and brought her to rivers and beauty, to places we can store memories from, in times of hardship.

where you can close your eyes at night to sleep, and maybe, in a strange place like a state institution, you will remember and visualize that eagle we saw soaring over the river in July.

Judi Chamberlin, humanitarian, activist, advocate and psychiatric survivor dies, but her voice will live on through all of us

Life as a Hospice Patient, blog author, humanitarian and advocate has died.

Please read the comment section of the link above, and you will see many, many dedicated activist's comments, love and memories left for Judi Chamberlin.

She was indeed a shining light in the darkness, and hope for others, like myself to not give up.

Please watch this video dedicated and created for her at her request by David Oaks, from MindFreedom.

I never knew Judi, or had contact with her, but am truly inspired by her.

This quote David Oaks left in the comment section of Judi's blog says it all:

"At Judi's request, I made a brief YouTube video for the celebration of Judi's life this past August. You can find it by googling:

judi chamberlin living tribute by david oaks youtube

I'm so glad Judi and I had a chance to visit when I got out to Massachusetts in October. As many have noted, she was so supremely pragmatic about the dying experience, as one can read on her blog here.

I asked Judi what I could do to help.

Judi said, "Remember back in MPLF? You put up a sign on the office wall that said, 'End Psychiatric Oppression by Tuesday.' That's what I want. End psychiatric oppression by Tuesday."



Judi's 'about me' on her blog side bar :

"I have been an activist in the psychiatric survivor movement since 1971.

I am the author of "On Our Own," the first book about the goals and principles of the movement (available from the National Empowerment Center (http://power2u.org/).

I believe that until people labeled as "mentally ill" have the same rights as others, we will continue to be marginalized and discriminated against."--Judi Chamberlin
--

Many people are writing about Judi Chamberlin, many articles, many lives touched

Message from David W. Oaks, Director, MindFreedom International

Furious Seasons,"Judi Chamberlin, 1944-2010"

Psychiatric Survivor,"Passing of Judi Chamberlin"

IS something not quite right,"Judi Chamberlin, hero

Access Denied,Living with MS-Herrad, "Remembering Judi"

Bore Patch,"Dignity and Honesty"

Disability Studies, Temple U," RIP Judi Chamberlin"

Virtual Memorials Judy Chamberlin

"In her early 20s, Chamberlin was hospitalized in a state institution and diagnosed with schizophrenia. She soon discovered that, as a psychiatric patient, she had no legal rights.

This realization was the catalyst for her activist career, which began in the early 1970s when she co-founded the Mental Patients’ Liberation Front.

Judi worked tirelessly throughout her life to create client-run, non-coercive alternatives to traditional mental health systems, and to end rights violations and discrimination against people with psychiatric disabilities.

Towards the end of her life, she became an advocate for the hospice model of care and the right to die at home. "

the outdoor time

i inquired about her going outside at the other ward, wrote letters etc and the result was according to a social worker i'd never met before, phone call on the 11th of january, she was being moved to a ward that would:

1. offer her outside time to play and get outdoors

2. "acuity", said that word and said that more staff on that ward will be able to accomodate her high needs.

Upon arrival to the new ward and every day since being in the new ward, i have never inquired to any staff about her being taken outside.

i allowed the process to take care of itself, obviously, i am not in charge, the ward change happened and one at that point assumes if the reason given was to go outside, then it would happen.

--

How yesterday went

we have visited at various times on this new ward, waiting for group times to be over, generally during the week have been there anywhere from 3:15 or 4 or 5 pm....not once before yesterday's announcement at 4pm was my daughtered offered to go outside with me present there.

for the staff to say she'd been out twice, obviously there are more hours to the day when i am not there, but yesterday i was told it's always a 4pm fresh air break.

i clarified this with the person, so that we could in fact write this down for my daughter so she knows a schedule etc. remember this is not about pleasing me, or making "the mother happy". i want my daughter to have basic care, and it took far too much to get this far.(no where)

because, i never spoke to this new ward staff about outside time, it was clear, that they'd heard something from "those higher ups", and honestly, yesterday felt like a mockery of the whole thing, a circus act where not one person had the same answer.

the outdoor time that was unknown to us, and never happened when we were there before, suddenly rushes in, shoes are not to be found, small size one pair is found, tells us one month before other size can be found, interrupted my daughter who was coloring, using play doh and eating a treat spending her one hour a day with her family--all people opening the door, saying ,hurry up, go outside, oh now its too late, oh wait someone else will take her out hurry up we found your slippers.

i mean it was unbelievable grandstanding. my daughter, packed up her new activities we brought her and stacked them on the table and just sat there.

whether these people understand autism or non verbal is quite apparent, the answer is no. i'm not expecting people to know. what i think was obvious though, is a patient is high need, non verbal, and no matter what anyone does, you cannot make her into what she is not.

she needs time to process, to hear what's been said to her.

write it down.

be patient.

give her a 10 minute time annoucement, "hey linds, in 15 minutes it's outdoor time, get your shoes on and get ready". it's that simple.

but they rushed in, gave no time for her to stop what she was doing, gave her 2 minutes to get ready and SHE DIDN'T HAVE ANY SHOES.

Please, stop making this about the person who is advocating, and helping others to understand how to work with my daughter. i am a support for her and anyone around her, and can, in a very short meeting, give tips like the ones above on how to work with a basic autistic childlike adult.

She CAN do independent things, she does know how to use her key and lock for her cupboard, but something was broken on it yesterday so the staff had to open and close it. this caused me another concern: can she get to her belongings now that she has new art supplies to keep busy? and her slippers...is that why she wasn't wearing them? she couldn't open her closet?

She's going to fall through the cracks here, if people do not understand how to prompt, ask her things and even write a note, or just observe her.

She is complex and i am not going to apologize for having a complex young adult for a daughter, i am sorry she is not a cookie cutter patient. she is an individual, thus the "individual treatment plan".

the staff also told me to bring her candy and snacks for 7pm snack time and they will keep it in a box for her.

that's great, but i hope they know at 7pm she might not be able to verbalize she wants it, i would hope someone would say, simply, "hey linds, want something from your snack stash box?" at 7pm.

it's getting to know the patient and it does not take much time to understand simple prompts and things work.

but yesterday, what a joke. i never saw anything like that before, and it was because they thought all i want to hear is "she went outside".

BAREFOOT? that's just great. i shake my head at this fiasco. something so small has turned into a joke, now we are on shoe topic. was entering with shoes how a patient goes outside?

i've never been asked to bring in shoes yet and she's there almost a month, i was told over 5 reasons why she wasn't being taken outside, and now i was supposed to bring in shoes.

she is their client, on medicaid and sent there by court order. you get the shoes, because she in your care. what about everyone else? this place serves indigent clients on medicaid!

WSH field of dreams, and shoeless joe jackson

while visiting my daughter today the announcement overhead declared "the following people are eligible" for the 4pm "fresh air break". last name on the list, was my daughter's!

"she's been outside 2 times already", the staff said.

"what shoes did she wear?", said her advocate and friend.

"i don't know that wasn't my shift, they told me, i don't know", the person said.

i opened the door of the visiting room and walked to the nurse's station and said, "do you have any shoes?". basing this on my knowledge from the past, that the hospital provides athletic shoes, with velcro straps to patients. knowing my daughter arrived to the hospital on 12-21-09 in plastic slip on sandals, and the only thing she owns personally are pink fluffy slippers.

"what size does she wear?" i tell the size and they say they only have one pair of shoes left, and it was not her size, too small, though my daughter struggled to get the shoes on her feet they were too small.

"we won't have more shoes for one month. doesn't she have shoes at home?", the person said.

(no, she hasn't lived at home for 2 years and the shoes she had on her feet were missing when the police found her at 1am in october 1/2 clothed and lost, in 40 degree weather, story goes on from there, we all know it by now right?)

they rushed her to get the shoes on, the patients were waiting! oh, too late! another person walks in the visiting room, i asked where her pink slippers are, as i have not seen them on her feet since she arrived there, and wondered if they were lost. that staff went and unlocked her closet, found the slippers, telling us my daughter's key didn't work for her belongings closet. does she have a new key or not? what about getting her things out?

--

if she went outside 2 times before today it was barefoot.

the patient has no shoes, could that now be handled? we have not even begun to talk about a treatment plan or mental health wellness goals, we are at the stage of what? take her outside? shoes? what shoes? locker key? what locker key?

i have decided to lower my expectations and walk my field of dreams where people have high standards, as high as my own as a mother.

---

she enjoyed our visit, and i will be bringing her a ball to take outside, and i hope they have found WSH issued shoes by then, because what if i wasn't there to notice she had no shoes on? are they honestly saying they walked her through hallways and out to the outdoor enclosed area barefoot?

--

Addendum:

IN 1998, at age 10, my daughter attended a girls basketball clinic. she is the one on the left in both of these photos, which are blurred due to a quick snapshot of the photos on the kitchen counter tonight.this women's basketball team is a part of the detailed fabric, so intricately woven before my daughter ever saw a psychiatrist.

Life was different then, and I wasn't bankrupt due to medical bills and out patient care for my daughter. (just in case anyone wonders why I do not have unlimited funds for private care or, at minimum, shoes. as a mother, this is an unfathomable topic. when others do care for my daughter, i expect nothing less than high standard of care, minus the red tape, etc.)

Advocate perspective with the humor that allowed me to hear my daughter's laughter after 3 years

find a tiny bit of laughter within the muffled darkness
--

love

one and a quarter hour has past when i arrived at the hospital. as i was walking toward the building where my daughter's ward is, someone called to me from their car window, asking me how to find ward C-7. due to it being the previous ward my daughter resided, i told them precisely how to find it, park, walk in and ring the doorbell. i told the person they most likely will find someone along the way who will help if my directions were not spot on.

my daughter painted this piece of artwork that adorns a wall at home. another wall boasts numerous frilly, ruffled ribbons won for her visual arts and photography entries in high school art competitions. the photography she took of horses were her favorites. this painting was done at home when she was 19 years old.
---
i pressed the button for the elevator, and the door opened. i walked out, and toward her ward door and rang the doorbell. this ward is brightly decorated, with curtains and bright paint and lots of inspirational quotes and decorations. detailed paper hearts adorn the open ceiling, the room reminds me of a classroom, not unlike where i have worked, in special education rooms and and typical school classrooms, where the tone of the room reflects the teacher. in this case, it appears to reflect the staff, or doctor, or just is. i don't know who it reflects, but it certainly is not sterile in depiction. appearances are not everything, obviously, but hell, where i've been in the last 10 years with my daughter anything that makes you feel better by appearance helps----but is not the answer---don't get me wrong--or right, this is a ramble from the heart, same as i've done for several years here.
--
today

WHEN she saw me from the room she was sitting in, she started to cry.

she leaned her head on my shoulder and i talked to her calmly. reminding her that this is temporary, and that she is loved and over the next hour or so, we sat together while i read a magazine out loud. at one point, talking to her we walked toward the window where i pointed out visuals. the dog park across the street where the old farm once stood, the entrance where i drive in and walk toward her ward. always making sure to somehow ground this for her.

what do you say to her?
--

i smoothed out her wet hair and placed it into a ponytail.

--

"love you", i said today, as i placed my arms around her shoulders before i left. i rode the elevator down and walked outside into the light rain. i took a deep breath and drove to her last residential facility. the place that would not phone police when she was missing in october. they called me earlier last week and left a message asking me when i would pick up the remaining belongings (of hers).

she will not go back there and she has voiced verbally and nodding that she is in agreement with that decision.

as a mother, i cannot allow anyone (unless they choose it of course) to return to a place that put her in such grave danger.

---

today

chapter closed.

"hi, i'm here to get Lindsay's things", i said as i walked into the building.

Two staff inquired as to where her belongings from the last 2 years were. one person came back and walked me to the gym.

the gym is full of belongings and metal folding cots. and there in the corner among so many other things were my daughter's things. i recognized a laundry basket i gave her and wrote her name on, and had to look in a plastic bag of clothes to yes, recognize clothes she owned. plus another plastic tub. it had been cleared out from her room.

the last time i was in that area/city was when she was missing for nearly 8 hours in October 2009, only to be found by police, cold in 40 degree temps, half-clothed.

--
TODAY

AS i drove home this song was on the radio. i drove this route for 2 years while she resided at that place, and as i drove away with her possessions in the back of my car,

i cried.

---


load the car and write the note
grab your bag and grab your coat
tell ones that need to know
we are headed north
...
Ahh Brooklyn, Brooklyn take me in.
Are you aware the shape I’m in?
My hands they shake, my head it spins.
Ahh Brooklyn, Brooklyn take me in.

Dumbed down and numbed by time and age.
You’re dreams that catch the world the cage.
The highway sets the travelers stage.
All exits look the same.

Three words that became hard to say.

I and Love and You.

the Avett Brothers, "I and love and you"
--




every star has a place to shine, even the ones we never see.

--

'brooklyn', in this post gave to me, a depiction of 'world'--- ' life'.

life, take me in, though you see the shape i am in.

--

this entire life situation has reminded me of an author i met as a teenager.Corrie ten Boom, in her book, The Hiding Place, had described a person in charge of release. The person's office was adorned with daffodils (tulips, flowers) in the garden, and appeared like home. As she sat in the chair before him, she became acutely aware of the dirt under her nails, and the lack of self-care she was afforded by residing in the concentration camp. I never forgot that story, the book or that woman.

Curtains and bright paint on the walls and daffodils at the entrance of the hospital in a month or 2 will not change reality.

The simple comforts we all know as home, are desired and needed to get beyond an immediate crisis, such as the one my daughter is in.

Curtains and daffodils.

i sigh as i write.


it's all about home, isn't it?
--

Dignity. The minimum request.

--

You've given curtains and paint, now fresh air and freedom. Facades, comforts, which is which.

--

Tending a Garden of Hope

Tending a Garden of Hope", click here to read the article, and about the woman who declared hope via a Daffodil bulb.

"You need to rewrite the ending of your story," said the insistent voice on the phone. "People need to hear that what you wrote is no longer true."- 2006 Seattle Times, quoting me.

one letter was acknowledged

The Letter I wrote to the Governor in this post is in fact the reason for the ward change happening, it was acknowledged via receipt in mail on Saturday the 16th, the day after my 2nd letter to the Governor regarding levels and fresh air and still no outside time by day 5 of being in the new ward was sent.

We will see what response to the 2nd and recent letter regarding continued lack of outside time will say.

The letter received on the 16th discussed in part not having staff to go outside at certain times also means people are entertained in other indoor activities.

Well, part of the reason the January 6, 2009 first treatment team meeting at the ex-Ward went south, was because we asked for outside time AND asked why she still was not attending groups (to earn a level!) One nurse at the meeting told Lindsay if she attended all groups she could "EARN a walk outside with mom".

The doctor at that meeting droned on about lack of funding to the point of insisting very heatedly to the advocate to "write a letter to your legislator". So we did.

In other words, someone was told to write me a letter explaining things (the letter stated she was moved to a new ward on the 11th, this of course I know because I walked with her through several wards to get to the new one, in a way that blew holes in the argument of flight risk to go outside, since we were inside the entire way to the new ward that has an exit access route to the enclosed basketball court area).

In other words, the point was missed, regarding outdoor time. It's not just about basketball being an activity she likes.

It's about fresh air, daily access to it, and daily exercise to promote well being and good health, and to individualize my daughter's case and consider that she has been locked up for 5 months total and 26 days at WSH the day that person wrote the letter to me.

It's good to know the letters to the Governor go through to the people who need to hear the story. But, my daughter still has not gone outside and at the last ward was not part of any groups on a daily basis, because one staff who will remain nameless, told me the staff could not take her to group until approved by the treatment team. This was told to me on Jan 6th as I entered the ward for that meeting. She had been taken to group once "on a free day" where anyone could go.

I have no idea if she has gone to groups from the 11-15 in the new ward, no one has told me anything. I do know she has not been outside, unless by chance she went out saturday evening after I left.

Indoor activity does not replace outdoor fresh air, a basic need for human sanity!

Recess is required in all elementary schools and PE is required in Middle and High School, I'd love a patient survey to circulate through WSH asking ALL patients about outdoor time and earning it, or wanting it.

diversion

a tree from the view on the road

The tree the tempest with a crash of wood

Throws down in front of us is not bar

Our passage to our journey's end for good,

But just to ask us who we think we are

Insisting always on our own way so.

She likes to halt us in our runner tracks,

And make us get down in a foot of snow

Debating what to do without an ax.

And yet she knows obstruction is in vain:

We will not be put off the final goal

We have it hidden in us to attain,

Not though we have to seize earth by the pole

And, tired of aimless circling in one place,

Steer straight off after something into space.

--On a tree fallen across the road, (to hear us talk), Robert Frost

kindness

we are always asked

to understand the other person's

viewpoint

no matter how

out-dated

foolish or

obnoxious.



one is asked

to view

their total error

their life-waste

with

kindliness,especially if they are

aged.



but age is the total of

our doing.

they have aged

badly

because they have

lived

out of focus,

they have refused to

see.



not their fault?



whose fault?



mine?



I am asked to hide



my viewpoint

from them

for fear

of their fear.



age is no crime



but the shame

of a deliberately

wasted

life



among so many

deliberately

wasted

lives



is.



--'be kind', charles bukowski

Clozapine, Clozaril treatment in a state hospital, abstract

Clozapine (Clozaril) therapy in a state hospital: Patient care and policy implications -1996

Jerry L. Dennis1, Dennis McBride1, Paul D. Peterson2 and Nancy Corley-Wheeler3

(1) Western State Hospital, Washington
(2) Department of Psychiatry and Behavioral Sciences, University of Washington, USA
(3) Good Samaritan Mental Health Services, USA
(4) The Washington Institute, 9601 Steilacoom Boulevard, S.W., 98498 Tacoma, WA


Abstract

This study assessed the effectiveness and costs of clozapine use with persons experiencing refractory chronic schizophrenia in a state hospital environment. All patients (112) placed on clozapine therapy between May 1990 and March 1992, and who remained on or were discontinued from clozapine therapy and not restarted were followed.

Discharge rates, incidents and hours of seclusion and restraint, incidents and hours of authorized leave and scores on the Modified Nurses Observation Scale for Inpatient Evaluation (NOSIE) were collected. The results found that few discharged patients returned to the hospital and lower community maintenance costs produced substantial savings in overall public support costs. Clozapine therapy is a cost effective alternative for the treatment of refractory schizophrenia.An abbreviated version of this paper was presented at the Fourth Annual Conference on State Mental Health Agency Services Research in 1993.

--
August 21, 2009 ramble

The following week would change everything it had been (unlocked with freedom) for 2 years, with her ending up being handcuffed by a horrible police woman who found her missing and shoved her into the gravel; then 2 days later committed by the state funded group home to a locked psych ward, only to be transferred to WSH on December 21, 2009, just before Christmas, her birthday and against a judge's recommendation.

Wednesday, Clozaril day: (click to read and see the view from the road)

August 21, 2009

spaghetti wednesday week

" i spend a lot of time in the car and have for years driving to and from various places my daughter has been. i was sitting in traffic on wednesday on the 60+mile round trip to pick her up and back to the clozaril blood draw. it's good to go get a blood test done where lab techs are kind, and know a person, thus my driving her once a month, it's worth it.

anyway, i was intrigued that i had this view from the car window at a traffic light.

what a glorious little traffic intersection flower garden!

i thought how it was pleasant that i saw a window-framed monet of sort. so i took the photo with my cell phone. the view out that window has been a constant for so many years it's ridiculous.

that day, i started a crock pot meat spaghetti sauce before i left in the morning. after 8 hours of slow cooking, it was culinary bliss.

thick, with stew beef that broke tender into tiny bits, garlic, parsley, mushrooms and onion and a dash or two of pinot noir toward the end of cooking. this morning there was a shrieking bird over the yard and i went outside to investigate (very loud) and it was an eagle. very interesting and amazing too. strange, to be annoyed at a shrieking bird like an eagle...it's rare and i can't take that for granted. i've really been grateful for the wooded area i live. it's been a nice solace. as are the various gardens i find over the years, even on the road."

16:54pm

“Far away there in the sunshine are my highest aspirations. I may not reach them but I can look up and see their beauty, believe in them and try to follow them.”-- Louisa May Alcott

--

the sunset was brilliant this afternoon, as the clouds parted way to allow its magnificent presence, as we arrived at the hospital.

there she was, she saw me and was crying and continued to cry and hug me. mumbling something while crying, i walked toward the desk and they set her dinner up on the table in the visiting room. her mind, today flooded with numbers. she ate dinner and the cookie and we brought to her. no words, only her own to her self. no outside time. it was a beautiful evening for it.


--

During the summer we spent many days at a river, tossing stones and eating ice cream. We found a horse farm where the allowed her to pet champion horses. the week before the residential committed her to the locked psych ward she was home (August) having her favorite spaghetti dinner. it was a wednesday, and i had said, "let's start a new thing, and call it "spaghetti wednesdays". She beamed. one week later she entered this "in the psych ward" journey.
--

"love you, Linds."

i said, as i looked at her and then walked out of the unit and went home.

fresh air, smoke breaks, and maybe the ACLU

FRESH AIR BREAKS SHOULD NOT HAVE TO BE EARNED IN THE "LEVEL" SYSTEM.

FRESH AIR BREAKS SHOULD BE AN OBVIOUS PART OF DAILY LIVING WHILE INPATIENT.

REMOVING, OR NOT ALLOWING PATIENTS TO GO OUTDOORS AS REWARD/PUNISHMENT/ IS UNACCEPTABLE.

FOR MENTAL WELLNESS, OUTDOOR TIME SHOULD BE MANDATORY FOR ALL PATIENTS.



Due to the fact that numerous DSHS (wa government) readers see this post and others, for the record as of 1.14.10 Lindsay has not been outside of the locked hospital since her arrival on Monday, December 21, 2009.

The day of the transfer by the previous locked psych ward. total time locked up: since August 2009 in 2 psych hospitals.



Though this afternoon when I visited, there was a 'fresh air' break call, she was not part of that, and for the record let's remind readers its a smoke break.



4 yrs ago, I went outside to the basketball court with her because apparently there were not enough staff to cover 'smoke break at 5pm'.



Simply put, let's just say discrimination toward a non smoker, but let's not.



WHY has this been such an issue? and why does it continue?



What's the reason now?



So far there has been 5 reasons for not going outside, let me guess now it's the weather?

1. not enough staff --every discussion
2. not enough funding 12-30-09 every discussion
3. medication change 1-06-10
4. can earn a walk outside w mom if attends group 1-06-10

5. day of ward change : (telephone call) 1-11-10 (reason for major change in care)


"moving her to new ward so she can go outside and play and have the access to the basketball (closed area) court, the higher ups approved it". "flight risk".
---

THIS photograph is of the ball that she bounced in the hallways and the outside area in March 2006 at WSH. When someone does not clean house for company the first time, the 2nd time they visit the house is usually clean.
---
Addendum:

Further reading of interest

From the UK , Schizophrenia, a Carer's Journal authored by a father of his son's plight while navigating a locked psych ward visiting times and care.

in this together.

Another blog author writes about Lindsay from the heart

the love that can bring down old stone walls-Lindsay's Journey.

Also

Lindsay needs to go outdoors, journalist Philip Dawdy

Zyprexa internal document leaker goes to court: Jim Gottstein

VIA Pharmalot:

"Gottstein, who runs The Law Project for Psychiatric Rights, a non-profit against forced drugging, was accused along with two others by US District Court Judge Jack Weinstein of violating a court order by scheming to leak and publish sealed Zyprexa documents. The Zyprexa documents, which detailed hidden side-effect data and improper marketing, were published by The New York Times (Gottstein provides documents and related background here), setting off a feverish debate over the public’s right to know about concealed side effect data."-Pharmalot
--

READ the Zyprexa documents Lilly didn't want you to see, here at Furious Seasons.

THANK Gottstein for bringing TRUTH and transparency to you, if it were not for these documents, we wouldn't know about the scandal, the lies and buried data regarding Lilly's ZYPREXA and diabetes, marketing to kids off-label, and the infamous "5 at 5" marketing slogan, and much more.

Gottstein is a hero, whether some people want to think that way or not, he is.

Further reading:

Gottstein on MindFreedom radio, 2009

Viva Zyprexa! Sidewiki entry

A comprehensive collection of articles written by journalist Philip Dawdy, the Zyprexa Chronicles at Furious Seasons blog

Zyprexa Chronicles, HERE.