Chapter 1
This story is about a young woman, a genius in her retention of the music of her teenage years, and her love for rhyming poetry, who is exhibiting autistic spectrum symptoms, developmental disability signs and is promptly labeled schizophrenic. When she was born at the hospital she chose the moment the gynecologist went for a cup of coffee to slide down the birth canal. Because her mother practiced the Lamaze method, her dad was in the delivery room and promptly picked her up in his arms. The nurse was still busy with her knitting in a far corner of the delivery room. So she bonded with her dad from day one and spent the rest of her life yearning for him. He, however resented her attachment and tended to unconsciously rejecting her. Her character was very strong and she began from day one to adopt a contrary style. Whatever she was asked to do she reacted negatively too, she was in short OPPOSITIONAL
The whole family suffered as a result of her lack of cooperation on family outings.
One day the house was robbed and Des who had a key to let herself in before her mom arrived from work, was found sitting on the edge of her bed, in a catatonic state. In her diary Des wrote that Tommy Shaw and John had done it, and Tommy Shaw had kissed her on the lips. Strangely there was a white sheet hung over her window. She could not have done it herself.
She was not even ten years old, and her dad who was a psychiatric social worker, took the whole family to a psychologist, who referred her to a psychiatrist, who put her on Thorazine.
Her poetic recitations, and lines from Shakespeare’ s her ruminations mostly cursing her mother, her anger, her insomnia, and lack of cooperation with family plans and outings, put her 3 brothers and her parents under undue stress. All turned against her but her mom, Dorothy Elms.
She reflected that Desiree’s uncanny spirit of independence, her love and need for freedom, and her need for privacy caused her to be contrary. But she was sure it would pass as she gained emotional maturity. However her habit of trying to cling to her dad, her constant reciting of poetry aloud all day long and sometimes all night long, her expressed desire for romance as a teenager and her obsession with the music of her times, were infuriating her father who wanted to find peace at home, after his hard day’s work at the hospital.
So she had the incredible bad luck of being diagnosed as having schizophrenia, and subsequently participating in a research project on psychiatric drugs, then being “treated” in several psychiatric hospitals at a time when psychiatric drugs were thought to be a miracle cure for a chemical imbalance in the brain, and where isolation rooms, ECT, and straight- jackets were still being used against those who dared protest their treatment. And dare protest her treatment with her oppositional character she sure did and it was her demise. It was only later on when she entered community living in a group home that physical straight-jackets were replaced by a plethora of drugs that were chemical straight-jackets. She who loved her freedom so much and was so independent and creative was reduced to a zombie, floating in the loss of reality the combination of 7 drugs created, and silently suffering physical ailments she was unable to express, or comprehend.
As a child, a teenager and later on a young woman suffering from developmental disability, she saw the world as a place of torture and violence, where her objections to her treatment only brought in more drugging and punishment normally reserved for prisoners of war, such as the isolation room and tortured with a month long ECT against her will or her parents’ consent.
(At that time her parents were still her guardian for she was in her early teens.)
But the real torture was being torn away from the safety and love of family life. (In fact it disrupted the family life as well.)
And when after 12 years of institutionalization at the State hospital (incarceration) to save money, the Judge at the state hospital released her to the community, her life was doomed to permanent disability and earlier death because of the excessive and unnecessary drugging that takes place in group homes and other community setting.
Being homeless at 31, she entered a group home and was subjected to a medley and increase of her psychiatric medications to 7 psychiatric drugs twice a day, at maximum dosages, drugs that were not compatible, but were added to overshadow side effects of each other, but most of the time only succeeded in increasing risks of side effects. And those combined side effects were astronomical, but never acknowledged by the staff as reasons to review those drugs and their dosages.
The reason for her excessive and unnecessary drugging was to overcome the fact that she had not been responding to any drug, and so they were using excessive dosage and a combination of 7 drugs to tame her into submission. At last they had found a way to control her body and mind and turn her into a complacent resident of the group home, in fact a zombie.
Because this is a contemporary story of our times as it reflects what is happening today in the field of community mental health, and because there are probably millions other around the US and in the whole world that follows the US lead, this story poignantly describes what is happening to our children, the ones who have special gifts, geniuses in their own categories, and who were born for a secret purpose of the deity or life force to help solve the world’s problems, or create a bond of live and a life energy and meaning that was not revealed otherwise. These unfortunate individuals who were singled out and diagnosed and traumatized probably belonged to the pool of talents from where our greatest scientists, artists, leaders, politicians come from.
Unfortunately, in the guise of humanitarian treatment, they are being turned into zombies everyday by mediocre workers who know nothing more than how to be obedient on a job and by unscrupulous pharmaceutical manufacturers who never look at the harm they are doing as long as their own coffers are plenty. The story starts in the present and ends in the past.
Quotes on AUTISM.
Quote from A Clinician Guide to Teaching Mindfulness, the Comprehensive Session by Session Program for Mental Health Professionals and Health Care Providers” by Christiane Wolf MD, PhD, and Greg Serpa, PhD.
Cognitive stress and constant rumination on potential threats create a stressful environment… Mindfulness can have a beneficial impact on cognitive stress by reducing the cognitive stress and arousal that can decrease cellular aging.”
“Back in 1949, in the book called The Organization of Behavior, Donald Hebb, a psychologist considered the father of neuropsychology wrote: When an axon of cell A is near enough to excite a cell B and repeatedly and persistently takes part in firing it, some growth process or metabolic change takes place in one or both cells .so that A’s efficiency as one of the cells firing B is increased.”
“Cells that fire together wire together.”
What ”rewires the brain is the actual practice of coming back to the present moment with kindness over and over again. We literally are rewiring our brain with our ongoing practice of KIND attention.” “When self-compassion goes up, depression, anxiety, and perceived stress go down.” Go to http;//www.self.compassion.org (Kristin Neff’s website)
“Quote from ACT
Based on Relational Frame Theory, ACT illuminates the ways that language entangles clients into futile attempts to wage war against their own inner lives. Through metaphor, paradox and experiential exercises clients learn how to make contact with thoughts, feelings and physical sensations that have been feared and avoided. Clients gain the skills to recontextualize and accept these private events, develop greater clarity about personal values and commit to needed behavior change”
The core conception of ACT is that psychological suffering is ususally caused by the interface obetween human language and cognition and the control of human behavior by direct experience. Psychological inflexibility is argued to emerge from experiential avoidance, cognitive entanglement, attachments of a conceptualized self, loss of contact with the present, and the resulting failure to take needed behavioral steps in accord with core values….Act takes the view that trying to change difficult thoughts and feelings as a means of coping can be counterproductive, but new powerful alternatives are available including acceptance, mindfulness, cognitive defusion, values and committed action.
ACT is an orientation to psychotherapy that is based on FUNCTIONAL CONTEXTUALISM, as a philosophy and RFT as a theory.
ACT focuses on the processes of language that are hypothesized to be involved in psychopathology and its amelioration such as
1.Cognitive fusion even if it is harmful
2.Experiential avoidance
3.The domination of a conceptualized self over the self as context
4.Lack of values. Confusion of goals with values.. can underlie failure to build broad and flexible repertories.
5.Inability to build larger unit of behavior through commitment to behavior that moves in the direction of chosen values.
ACT alters the way difficult private experiences function mentally rather than having to eliminate them from occurring. This empowering message has helped clients cope with a variety of clinical problems including depression, anxiety, stress, substance abuse and even psychotic symptoms.
We are learning that these same processes help us understand and change a variety of other behavioral problems, including such areas as human prejudice, work performance, or the inability to learn new things.”
Functional Communication Training
Teaching alternative assistance seeking
and attention getting phrases in an effort to replace the
challenging behavior .
ELIMINATING DISCIPLINE PROBLEMS BY
STRENGTHENING ACADEMIC PERFORMANCE†
Disability in America
One in 5 Americans has a disability. 56 million people! And that’s a low estimate. According to ex NJ Governor Richard Codey, a courageous advocate for mental health, that rate is 20%. (I in 4)
About DESIREE ELMS.
As the story unfolds.
Thirty six years of psychiatric drugs including Risperdal have destroyed Desiree Elm’s ability to understand whatever you may be trying to tell her.
In addition to the many traumas Desiree experienced since her childhood, which was disrupted and nearly destroyed by a diagnosis of severe mental illness, one could count her dyslexia and HER NEED FOR PRIVACY AND FREEDOM WHICH DICTATED HER oppositional tendencies, as well as her sarcastic sense of humor, as the source of her woes.
To correct her dyslexia, Des was taken out of the classroom to be transported to the ophthalmologist who did reverse it at the expense of her academic learning. Then while attending a sophisticated private school in Passaic, one day when her mom was late picking her up, and found the young girl of 13 years old trembling and shaking all over with fear. (Collegiate 1981-82) And the last straw that year was when at Christmas, the family was ready to go to the grandmother’s house, Des sat in her bed in her nightgown and was in a catatonic state. She did not respond to her mother’s voice, and just stared somewhere with a blank face.
Which prompted her dad, a psychiatric social worker to consult a psychologist, who in turn referred the child to a psychiatrist who without further ado, put the child on Thorazine. The drug disfigured her, and the sight of her tongue sticking out of her mouth uncontrollably caused her physical pain and made her an object of ridicule if she dared go outside.
What happened next was a series of traumatic experiences for the child and her family, especially her mother who felt the separation of her daughter from the people who loved her was a most cruel act. In Nov 1982 she was volunteered by her father at Columbia Presbyterian research project with a promise of a cure and the humanitarian goal of saving other youths like her.
So now from being tied in a straight jacket, and being confined like a prisoner of war to an isolation room for daring to protest her treatment, to undergoing ECT for a whole month, and being raped by men at the psychiatric hospitals, to today’s chemical straight jacket of psychiatric drugs, she had never been allowed free choice, and her consent to any treatment as testified by her electronic signature was a derision o9f justice and a violation of her human and civil rights for in her state there was no way her consent could be INFORMED and knowledgeable CONSENT. She, whose spirit was soaring with romantic ideations about her future love life, was subjected in the 36 following years to a treatment to which she could never give informed consent, and was unable to apply her natural propensity for contrarious ness because of the power of the chemical straight jacket she was clad into.
In 2016, the neurologist her mother consulted, said her lack of comprehension was severe. In addition to causing severe side effects on her physical health, the drugs had impaired her cognitive ability if not her intelligence, and diminished her ability to function, by creating a considerable lapse in time between her perception and desire for a certain action and her ability to perform that action, although there was nothing wrong with her muscles. In particular the drugs had impaired her ADL(Activities of Daily Living.) to a crippling degree, so that it was always a struggle to be on time for any event, including getting ready to go shopping, attending parties, going to MD visits, and attending the daily program, group home residents are required to attend. Group homes are no longer supervised by MDs and RNS. They no longer provide supervised learning or leisure activities, except the daily shores they are required to perform to live in a clean environment, and when the residents must also buy their own foods on a limited budget and cook their own food without ever receiving instruction on how to do so, the results can be almost catastrophic, for at a time when their treatment has depleted them of vital nutrients, it is now recognized that diet is of prime importance.
So Des could no longer take care of herself, within an acceptable time frame, without supervision and constant encouragement, to attend her day program on time. And most disturbing of all, she recently was manifesting incontinence, which could cause her eviction from any group home for it is against their regulations.Evidence to support these discoveries include psychological neurological testing and pages of her homework with her bedside teacher in 1984, as well as photos and notes taken by her mom.
GUARDIANSHIP AND THE THREAT OF HOMELESSNESS
On March 22, 2016 Dorothea Elms was granted the legal guardianship of her daughter Desiree Elms, (Des for short) in a court of law in Newark, NJ.
She was now her daughter’s legal guardian, responsible for the well- being of her person. As a result, the site manager at the group home where Desiree lived, told her that they would no longer drive her to medical appointments and that she now had to find new MD’s for her daughter in the area where she lived.
And when she moved to another group home, the “service coach” refused to provide medical transportation for Desiree. And the site manager had nothing to say.
And so Dorothy started taking her daughter to a new primary doctor as well as to many specialists. Having no counsel about going about finding the best MDs she resorted to the internet and adopted a method of trial and error. For instance, the first neurologist she took him to said he was the wrong MD because he specialized only on headaches, but he did give her a prescription for a brain MRI.
One day she took Des to the podiatrist and noticed a beautiful office of a radiologist downstairs from it. She inquired and they took her prescription and did her MRI. They did it despite her pronounced movement disorder, which was one of the side effects of the neuroleptics she had been taking for 36 years. The guardianship did one good thing for her: Desiree moved to a group home about 20 Minutes away, shortening the distanc and time she needed to travel every week end to visit her daughter. However when the new group home issued their most recent eviction notice, Dorothy Elms realized that despite receiving the Surrogate paper that awarded the guardianship, they had made Desiree sign two contracts once in September and then in December, without notifying her guardian . That was the habit of UNINFORMED CONSENT of the agenciesthat provided services for the disabled.And for agencies that propose to make life better for the disabled, one needs to wonder about how the threat of homelessness can make these individuals feel better.
Desiree’s MRI had the following differential diagnosis
Lyme Disease, or vasculitis.
And her mother undertook to check out the clinical significance of this test.
Her arguments were based on memories of the outrageous effects of the drugs tried at Columbia Presbyterian in a new psychiatric drugs experiment, (see Regine Dubono’s book entitled: “She Ain’t Heavy, She Is My Daughter”.)
When Des finally came home, from Columbia Presbyterian, sunk in a wheelchair, looking like a soldier returning from having been a prisoner of war, totally incapacitated, the new psychiatrist prescribed a drug injected once a month. No more pills!
Ah but that drug too had its own side effects: In particular it caused her to jump out her bedroom window and board a bus to NYC, which stopped to pick up passengers across the street from her home, (or perhaps she had jumped into a car, they would never know what really had happened as Des claimed she had no recollection of the incident,) to be found 24 hours later in a dangerous park in Staten Island.
She was doing well at home for nearly four years (1983-1987) except for her habit of talking loud all night. And that was her demise for her dad needed his sleep in order to function on his new job as a psychiatric social worker. Then, again her father was advised by a colleague psychiatrist to send her to the Carrier Clinic, and after experimenting again with the drugs, the Carrier Clinic committed her to Greystone Park, where she was again subjected to constant trials of drugs in their efforts to reduce her anger.
Their psychologist noted that she fought that violence was a way of life. Yet they did not reason that her treatment since she had turned 12 had been being restrained by force in a straightjacket and if she protested, she would be punished by being placed in an isolation room where she continued to scream her outraged, and would only be released when she fell asleep out of exhaustion.
But at Greystone Park, she seemed to be a little better off. What happened there was the human touch. The workers were mothers themselves, they appear to have a heart and treated Des more humanly.
Some of the workers understood their role with the patients as substitute mothers.
What was also different there, was that she was under medical doctor’s care as well as psychiatrists, and it was presumed the doctor’s would watch out for side effects of the psychiatric drugs.
Her stay there however produced no improvement in her mental health. Unfortunately Dorothy was very credulous and when told y her husband that being 18 years of age, Des was now a ward of the state and had been committed involuntarily and that there was nothing she could do to take her back, she accepted those lies, and failed to contact the psychiatrist who had made her promise she would never allow her to go to a hospital again.
Her husband needed and had a right to peaceful sleep. IF she were to attempt to take Des out, she would have to move out with her. But her wages at the College where she worked would not even suffice to pay rent.
Finally, after 12 years of incarceration there because of the new state mandate to release stabilized patients to the community, she was declared stable on two drugs: Risperidone and Tegretol, and released by a judge, to enter a group home in Warren County.
Dorothy had a degree in Chemistry and she started researching the interactions between these two drugs in the scientific literature. Here was some of what she found.
“Effects of carbamazepine co administration (400 mg/day for 1 week) on plasma concentrations of risperidone and its active metabolite 9-hydroxyrisperidone were studied in 11 schizophrenic inpatients treated with 6 mg/day risperidone. Blood samplings were performed before and during carbamazepine coadministration, and 1 week after its discontinuation. Plasma concentrations of risperidone and 9-hydroxyrisperidone were measured using liquid chromatography-mass spectrometry-mass spectrometry. CYP2D6 genotypes were determined using the polymerase chain reaction method. Plasma concentrations of risperidone and 9-hydroxyrisperidone during carbamazepine coadministration (2.5+/-3.6 ng/ml and 19.4+/-4.1 ng/ml) were significantly ( P<0.01) lower than those before carbamazepine co administration (5.0+/-7.9 ng/ml and 34.6+/-9.8 ng/ml). The changes in risperidone concentrations were positively correlated to the concentration ratios of risperidone/9-hydroxyrisperidone (r(s)=0.90, P<0.01), which were closely associated with CYP2D6 genotypes. The present study suggests that carbamazepine induces the metabolism of risperidone and 9-hydroxyrisperidone, “and inversely. These two drugs seemed to weaken each other, so that it might be surmised that her mental health got better under no drugs, however both these drugs augmented each other’s side effects, therefore giving rise to physical ailments. Also Tegretol (Carbamazepine) often gives rise to a higher need for Levothyroxine.
And so at the age of 31 and without a High school education, (her level was probably 6th grade,) Desiree was released to the “Community” by entering a group home, and attending a partial hospitalization program, with a goal of becoming rehabilitated. To insure the safety of the residents, at the time it was designed as a way to rehabilitate the patients, (rather than as a fertile ground for administering the drugs they were told to use, on an abundance of “free human subjects” for their drug studies by pharmaceutical companies.
In 1999, In the 450 program, the group homes had their own visiting MD and their own Psychiatrist so there were no reason for her parents to worry about her care. In fact they were pleased with the arrangement for Des had chosen to live in the very best group home. It was a beautiful home, well staffed with ten caretakers for 15 residents. It gave them new status and dignity as the patients were no longer called patients but residents. And although Des needed special care for her feet, for she had just undergone surgery on both feet because of frost bites she had suffered early on during her stay at one of the cottages at Greystone, the staff had reassured Dorothy that they would gladly care for her feet It was a loving secure kind of environment.
