Dialling in on medical

Now that Chris and I have lived in Florida for a few months I’ve had a glimpse of the way the health system operates here, which, not surprisingly, caters to old folks, of which Florida has lots. Many of them are relatively affluent to truly rich, but not to be forgotten is that Medicare is available to those over 65.  Ergo, there are tons of medical facilities here.

Some old people like to talk about their medical problems, many to the point where other people’s eyes glaze over. (Not a good thing to do around the kids if you want to appear youthful.) In Florida, you can spend your whole day indulging in this pastime because of the demographics. When conversation veers this way I call it “dialling in on medical.” So, where am I going with this? Well, much as I dislike discussing my own health (but don’t mind discussing Chris’s, lol) I can see that navigating much of life here requires a certain attention to the medical.

My post today is what can happen when people move between systems. In Europe, I was on no prescription drugs (with the specialist’s blessings). Apparently, I didn’t have a big enough heart problem or else my atrial fibrillation (A-fib in US speak) was considered minor. I was advised that I could get by on a daily baby aspirin. “Now that we’ve plugged the hole in your heart you’re fine and no need to see a cardiologist was the gist of my send-off.

Today, barely three months into living in Florida, I find myself on two prescription drugs and I have a cardiologist. My A-fib (which I’ve had all my life and is as much a part of me as the freckles on my arms) set off alarm bells at the GP’s office when I went in for a check-up. “But I’m on baby aspirin to prevent strokes and heart attacks,” I protested, “and the Swiss cardiologist didn’t think my A-fib was a problem!” Baby aspirin, the doctor replied, isn’t effective enough.  This was news to me, and probably to all those people who are on baby aspirins for the same reason I am. He left the room and returned with three boxes of sample anticoagulants. “They’re very expensive,” he said, “so this’ll tide you over until you see the cardiologist,” which turned out to be the following week.

“You’ve got A-fib,” said the cardiologist after reviewing my records, “and your heart rate is too high right now.” After arguing back and forth a bit with her I wasn’t about to ignore her advice and bravely forge ahead on a baby aspirin, but I still can’t figure out why I can’t just ditch the expensive prescription anticoagulant (twice a day which means a refill twice as fast) in favor of the once a day baby aspirin and the virtue of being on one less prescription med. Well, maybe I can figure this out. Am I being too cynical?

Chris had his own encounter with the long arms of pharma. His new psychiatrist suggested to him at their first meeting back in October that he consider going on injectable Abilify. When I heard this I hit the roof. Injectable Abilify? What the hell did the doctor think he was doing by suggesting to a patient on the first visit, a person who appears “relatively normal” on very little liquid Abilify, that he up his dose and lock himself into perpetual patienthood? Chris told the doctor he would think about it. What have I been doing wrong all these years that Chris would even suggest to a doctor that he would “think about” being locked into something that he is pretty much off of? There are several reasons I can imagine why Chris said it, and only one reason I can think of why the doctor suggested it.

No escape from being on a prescription here is the conclusion one might draw.

Radical acceptance – who practices it?

Recently, I’ve been thinking about the term “radical acceptance” after spending a couple of hours last week walking in the woods with “Jennifer” (see previous posts). “Radical acceptance” is a term coined by psychologist Marsha Linehan and it means “not resisting what you cannot or choose not to change” or words to that effect. I think of it as “playing the ball where it lies.”

I believe that radical acceptance isn’t just recommended as a coping mechanism for self acceptance, it also involves how outsiders interact with the individual. Outsiders are the family, the mental health system, the courts, etc. In a family situation, an example of radical acceptance could be accepting the fact that your relative doesn’t want to take medication or doesn’t want to do anything that you think they should do “for their own good”. And, you may be right about what they should or could do but wrong about how to change the situation for the better. Another way of thinking about radical acceptance could be “whose side are you on?” But, I haven’t cleared my understanding of the term with psychologists. I’m winging this one.

Radical acceptance is a tension pitting the individual against the care providers and it can feel quite “unfair” that one side has to do the acceptance while the other side appears seemingly oblivious to the need to constructively help herself.

Jennifer’s hospitalization happened after she took herself off the medication, Haldol, which she told me she hated because it made her hands tremble. (She did it responsibly by tapering slowly under professional guidance. In my book she gets points for that but I doubt that the mental health system sees this as a positive.)

Jennifer’s hands are once more shaking because the hospital put her right back on the medication that she doesn’t want to take. This seems totally contrary to the idea of achieving best outcomes by listening to the patient and taking her position into account. What are they thinking?

Her state appointed guardian wants to move her to a residence where her med intake can be supervised. It’s located in a small village half way up a mountain. Getting to her normal haunts will be that much more time consuming and expensive. Jennifer doesn’t want to move to the new place. She asked me to intervene. Without telling her I have done so, I wrote to the guardian asking if it is at all possible that they can find living accommodations closer to “civilization” (although I was more diplomatic in my choice of words). He is aware and sympathetic to the fact that she is isolated. At least, that’s what he told me. The public health system doesn’t have much leeway for these kinds of requests, but I’m nonetheless hoping he’ll prove me wrong.

To sum it up, Jennifer doesn’t want to shake, doesn’t want to take medication, and she doesn’t want to be isolated. Instead, she is being forced to shake on the same old med and she’s being moved to a remote location where she will have little social interaction. Many people say the definition of insanity is doing the same thing over and over but expecting a different outcome.

Who here is playing the ball where it lies?

Judge Rotenberg Center – a shocking story

I apologize for the length of this post. However, the webpage for the original article is not available right now. Please read this letter from a former teacher’s assistant at the Judge Rotenberg Center, a residential facility in Canton, Massachussetts that, according to its website, offers “very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems and developmentally delayed students with autistic-like behaviors.”

The Rotenberg Center appears to have a two-pronged strategy to appeal to desperate relatives: To get children and adults off the heavy medications and to employ behavior modification in a system of punishment and rewards. This strategy is entirely superficial, as if severe mental health problems are merely a question of getting off the meds and then fixing the “bad behavior.” When I looked at their website, I was struck by how the treatment is entirely focused on behavior-modification, instead of finding out the psychological underpinnings of a person’s distress. It’s hard to believe in this day and age that such a place exists, but it does.

Rather than exploring human alternative treatments, the Rotenberg Center routinely employs shock devices as a disciplinary measure, sometimes up to thirty times a day. This  is not done for “medical” reasons nor is it done in privacy. According to the letter writer, students regularly witness electric shocks being performed on their classmates. The teacher’s assistant found he was getting stress reactions to watching this. You can imagine what this did to the patients!

Canton Patch
September 13, 2011 9:00am
http://canton.patch.com/articles/letter-to-the-editor-a-former-judge-rotenberg-center-worker-speaks-out

Letter to the Editor: A Former Judge Rotenberg Center Worker Speaks Out
Greg Miller worked for the Rotenberg Center in Canton for three years and speaks about his experience.

Warning: Some of the content in this letter may be disturbing. Reader discretion is advised.

By Greg Miller

There is so much for me to share about my three years of experience as a staff in Judge Rotenberg Center that I wanted to share them in writing.

Please note that other former JRC teachers and staff and even psychologists have contacted me in the past to tell me that they appreciate my speaking on behalf of the students, and to tell me of legal threats that keep them from speaking out vocally against JRC’s practices. I can share only my own experiences and opinions. No doubt JRC has attempted to discredit me and what I have to share.

My Background

I worked for the Judge Rotenberg Center for over three years, between  2003 – 2006. I worked as a Teacher’s Assistant, and I turned down offers to work at JRC as a classroom teacher because I was too busy with my studies. I have a Master’s Degree in Elementary Education from Lesley University. I previously taught as a classroom teacher in Watertown Public Schools, Lincoln Public Schools, and Winchester Public Schools. I worked too many hours as a classroom teacher to be able to also study alternative medical approaches for the treatment of children with learning difficulties and autism, and JRC offered me an opportunity to continue to work with children and youth while putting myself through school with ideal work hours.

The reason why I remained at JRC for three years instead of leaving on my first day of training was that I liked JRC’s commitment to getting students off of psychiatric drugs. Students were arriving at JRC looking very drugged up and in very rough conditions. I was a very dedicated worker and supporter of JRC at the start of my employment.

JRC always treated me fairly as an employee.Then my opinion of JRC started to change significantly to where I felt I needed to leave JRC and to speak out against its practices. I started to get signs of traumatic stress while working at JRC, and my doctor advised me repeatedly that I should leave JRC for my own health reasons. I became more aware of what was actually happening to individual students at JRC that parents were not permitted to see, and I wondered how many parents would actually be supportive of JRC if they saw what was happening to their children as I did.

My Opinion on the Use of JRC Shock Therapy

I believe that electric shocks are harmful not only to the student receiving a shock, but to all other students in the room witnessing the traumatic shock incidences. Electric shocks are not necessary to help JRC’s population of students. I saw much use of electric shocks that I felt were unwarranted to appear in student plans, and it seemed to me that individualized student plans were designed without proper oversight or adequate safeguards to prevent misuse of the shock devices.

I was having signs of traumatic stress including nightmares, night sweats, and elevated blood pressure, so that my doctor advised me that I needed to leave JRC. So imagine what it is like and what harm is being done to students who are actually on electric shock devices, who are committing no “wrong” behaviors, but who must witness their classmates getting shocked all day long!

I have witnessed the traumatic effects of electric shocks not only on the students receiving shocks, but also on other students in the room witnessing the shock “treatments” even though they have exhibited no behaviors. It was not uncommon to have incidences where I would reach for my pencil in my JRC apron pocket, on which hung the remote controls, to have students crying out and or jumping up, or throwing their task up in the air, and even grabbing me, because they thought I was going to shock them.

These were all behaviors that would cause students to be shocked depending on the individual student’s plan, so groups of students would all get shocked together, all out of their reaction of fear due to myself or another staff reaching for a pencil in our pockets. If any staff chose not to shock students at such times, we would immediately lose our jobs for “refusing to follow student plans.”

I have participated as required in following student plans to shock multiple students, including when they reacted to watching a fellow classmate tied up in a restraint chair getting attacked by a staffer with a plastic knife (being held) to the student’s throat. This was a judge-approved Clockwork-Orange-type “treatment” for a student who swallowed a small X-Acto knife blade. A staffer, according to the plan, would run up to the student who had all four limbs tied all day long to a restraint chair, and pretend to force a plastic knife down the student’s mouth while another staff pressed the remote control to give a shock to the student. The staff would repeatedly yell in a gruff voice, “Do you want to swallow a knife?”  Sometimes a number of students watching this would act out in fear and receive shocks for jumping out of their seat, crying out, or dumping their task in reaction to the violence. I highly doubt that the judge ordered all 40 plus other students in the same classroom to have to watch this violent “treatment” of their classmate with his arms and legs tied to a chair. This took place day after day for weeks, with their classmate unable to defend himself in any kind of way. I felt nauseated just being in the room during those treatments, and I was not one of the humans with electric shock devices strapped to my body, so I could only imagine what the students were going through.

I have witnessed terrible injuries including bloody scabs all over the torso, arms, and legs caused by the electrodes. While I have heard of Dr. Israel previously claiming that the injuries were due to staff not properly rotating electrodes after shocking a student, the reality was that some students exhibited behaviors resulting in up to 30 shocks in a day. Some students stopped their behaviors after receiving their maximum 30 shocks for the day. Most of the shock devices used two electrodes to pass current through a specific distance of human flesh to maximize the amount of pain from the same amount of current. Two red skin marks from electrodes per shock, times 30 shocks in a day, quickly adds up so that very soon electrodes will be placed over previous marks resulting in bloody scabs. In these cases, the multiple patches of bloody scabs have nothing to do with staff failing to rotate electrodes after shocking students. Rather it exemplifies that the electric shocks approach were not appropriate for the student, and that other approaches should have been found.

Dr. Israel has previously compared the electric shock devices to bee stings. I vividly remember nearly getting the wind knocked out of me during training at JRC back in 2003 when (I was) permitted to test out the weakest of JRC’s electric shock devices on my own arm. That was no bee sting!

I have worked with a young lady who was so underweight while on electric shock devices that she had a test tube sewn into her stomach to feed her when she would not eat enough. Upstairs there was a photo of her on the wall near Dr. Matthew Israel’s office from when she first entered JRC, looking comparatively plump.

I have witnessed a student with autism getting shocked for sitting at his desk with his eyes closed for more than 15 seconds because his mother didn’t like the fact that he closed his eyes. I wondered what it might feel like for me to try to shut my eyes at night to go to sleep after I had been shocked several times during the day for closing my eyes! Initially in his behavioral plan, the student was shocked for closing his eyes while walking down the hallway with the reason that it was “health dangerous” to close one’s eyes while walking down a short carpeted hallway. Later, JRC added more and more places where this student would get shocked for closing his eyes. Students with autism characteristically see the world as over-stimulating and overwhelming. I saw a photograph of the student at a young age with his eyes closed while holding up a large fish on a fishing trip. I don’t believe students should be shocked for having autism.

Besides shocking a student for the behavior of “closing eyes” while sitting at one’s desk for more than 15 seconds, or while walking down the hallway, shocking students for reacting to their classmates getting shocked, or shocking a student with all four limbs tied to a restraint chair while a staff violently attacked the student with a plastic knife to teach him a lesson, there were many other behaviors for which students were shocked that felt absolutely wrong to me. Students during my time at JRC were shocked for tearing a paper cup or Kleenex while sitting and watching television during their break, shocked for standing up and raising a hand and asking to go to the bathroom, shocked for pulling apart a loose thread, shocked for going to the
bathroom in one’s clothes after signing that they need to use the bathroom for over two hours, shocking a blind, nonverbal girl with cerebral palsy for making a soft moaning sound in an effort to communicate and also shocking her for holding a staff’s hand, to name a few examples of many.

I am still unaware of even one study done that demonstrates that student behaviors remain “changed” after leaving JRC, once off the shock devices.

I was told repeatedly as a staff member at JRC that not only were these student behavior plans permitted by the judge, but some of the plans were ordered by the judge. Looking back, I question what the judge knew. Certainly JRC had a huge lack of oversight and it seemed that there was inadequate protection for the students.

On more than one occasion, I remember arriving to work and being surprised by drastic changes to individual student plans, where many behaviors for which a student would be shocked were eliminated from the student’s plan or else moved to a “minor” category for which the student would not be shocked. I remember being told by a student’s case manager that the behavior plans were changed because the student had an upcoming court date to prepare for. I do not believe that the judges were given the full picture of what they were approving when approving electric shocks on students.

After looking back, and to summarize some of the atrocities I witnessed and participated in while working at JRC, it is difficult for me to understand how I could have done something so cruel to other human beings. No doubt I was operating on misinformation, and misled to believe many of the same arguments that I hear parents arguing today. I truly believed that JRC was the only school that could help this population of students without the use of psychiatric drugs that turned children into zombies and ruined their livers.

Some children, not all, do respond to the threat of pain as long as they are strapped up to electric shock devices. But it is my strong opinion that JRC used electric shocks for many behaviors when other alternatives were available, and to the exclusion of more effective treatments. Psychologists leaving JRC told me that they had other treatments based on real research in established psychological journals that they wanted to use, but they were not allowed to use those other methods because Dr. Israel favored exclusively the use of electric shocks.

Dr. Israel was out to prove the power of his electric shock devices, and in doing so, somewhere along the line the shock devices must have become more important to him than individual students. It is my opinion, as a former JRC teacher who later worked at another school serving a very similar student population as the JRC students with autism, that NO shocks are necessary to control student behaviors at JRC.

If I was given the opportunity, I would sincerely apologize to each and every student I shocked at JRC. I certainly applaud Senator Brian A. Joyce and many others who have worked so diligently to end what I consider to be torture. Torture that is allowed and exists only in Canton, Massachusetts.

Another run at med reduction

Chris has the go-ahead by his psychiatrists to start lowering the Serdolect. (He is on 8 mg Serdolect and he remains on 10 mg Abilify for the foreseeable future.) I am not necessarily optimistic that this will be the beginning of the end of the medications, but I’m willing to entertain the thought. The problem the last time, despite the fact that the psychiatrist recommended a program of supplements and slow, methodical lowering over a one year period, was that Chris relapsed anyway eight months after finishing the reduction program. So, I tend to take it all with a grain of salt.

This time I consulted a website that instructs Chris to pre-taper for a week before the taper by adding certain supplements such as Omega 3 and Body Calm. Then he begins an exponential process of lowering his meds by 5% every fourteen days for a total of six weeks, waiting two weeks, then reducing every two weeks by 10% until the end. The number of vitamins he needs is minimal to the thirty-five supplements he was on the last time.

I hesitate to leave the process entirely to Dr. Stern, mainly because doctors have a reputation of lowering the medication too fast. Whether or not anything we are doing will define the outcome remains to be seen. Chris is also thinking about starting yoga classes, which in addition to his chakra spinning sound therapy and the books he reads hopefully will give him the resilience he needs to successfully pull this off.

Chris has been on medications for six years, and only off them for a brief period of about a year. I must confess to feeling a bit jaded about the outcomes. We can do everything right and he could still relapse. There is more to relapse than blaming it all on the meds. So, we will try to maintain a calm, non-judgemental environment. We will not put pressure on him do start any new directions.

Thrown back up through the nether world

Last week I spent three days in bed with a nasty viral infection, leaving me this week with little enthusiasm to tackle a daily blog post or even edit what I “churn” out. With Christmas fast approaching and my youngest due home from college in three days, you will be hearing less and less from me for a while. The flu that held me in his vice-like grippe for three days made me feel like I had been dragged through the seven gates of hell and back.

There is not much to report on the holistic recovery front. I was dismayed to see the article in the New York Times about the drugging of children on Medicaid. When did primary school performance (primary school no less!) become so important? Makes you wonder who the insane folks really are. The saddest part of the article for me was the mother who somehow had allowed herself seven years ago to be talked into believing that her three year old son was mentally disturbed. Now she has a ten year old son with adult health problems and still seems to feel that she has chosen the right course of action.

I remember the ease with which young parents bought into Ritalin when my own children were small. As girls gained political ascendancy in the school system boys became more and more viewed as a nuisance factor. They were expected to take on the characteristics of girls, not to be valued for their own characteristics of fearlessness, civil disobedience, curiosity, and physical strength.

Since undergoing sound therapy, I am much more aware that my dreams are a bridge to somewhere else in me. The dreams haven’t changed, but something in me has changed about my relationship to them.

It is easier for me to see sound therapy’s effect on Chris. After his first session he started a daily jogging routine. His body moves with more fluidity. I am noticing less and less of those awkward mechanical moves.

Ian and I had insisted at our last meeting with Dr. Stern that the Serdolect be eliminated completely. Chris’s medication is finally starting to be lowered. Chris has been extraordinarily tired, which signals to me that the sound therapy is helping him get better by reducing the need for the medication. The “need” for the medication lasting beyond the initial crisis period is the view of the psychiatrists at the hospital, not mine.

Medications and power

When Ian and I met with Dr. Stern earlier this month we urged her to take Chris off Serdolect and not to substitute another antipsychotic. For once, even Ian was on my side about the Serdolect after we realized that it can lead to sudden cardiac arrest. Somehow, Dr. X at the psychiatric hospital had “forgotten” to tell us about this particular side effect, probably because he had finally managed to get me to shut up about his adding a second medication on top of the Abilify. It was only after Chris went for an ECG that it dawned on me why he was having one in the first place. I didn’t bother researching Serdolect’s particular drawback because all antipsychotics have side effects (at least this one wasn’t clozapine) and I am sick and tired of continually being on the offensive with the doctors and being on the opposite side of Ian.

I feel that with the subsequent interventions that Chris has undertaken since leaving the hospital in May (Tomatis Therapy and Sound Therapy) he has a better grip on reality and will be in stronger position than before to get off these stupid medications once and for all. He also has to be in a stronger position to make his own case with Dr. Stern. I really hate having a psychiatrist involved in what I consider our “family business,” meaning Chris, Ian and I coming up with our own agreed strategy. If there were no prescription medications involved, we would only be needing Dr. Stern to act as a counselor. Prescription medications means a psychiatrist has to be involved. The psychiatrist then has gained enormous power over the decision making of the patient and family. I forgot to add that there is a second psychiatrist involved who I haven’t met – the whom who prescribes the medications. This is an arrangement that we agreed upon with Dr. Stern so that she can meet with Chris without medications being the main topic of discussion. Where there is a psychiatrist, there is medication, however, because Dr. Stern needs to confer with the second psychiatrist about them.

If I think too much about this and actively intervene, I’ll be headed for another round of sleepless nights. My new strategy is to trust Dr. Stern to do the right thing with Chris’s fully informed consent. Dr. Stern has been remarkably open to listening to us in the past and has professed a desire to see Chris off the medications “at some point.” The point where that “some point” is located is of course up to debate.

Getting out in the world

I had a nice chat with Chris last night. He has decided to enter the annual race next month around our city. This is just super, on many levels. Chris is a person who I have never seen run, not even as a small boy. He just didn’t run, period. (He didn’t even walk until he was sixteen months old.) I hope I am not reading too much into this, but my recollection is that the day after his first sound therapy, he went out for a small run. He has been out nearly every day since. He told me at the time that he no longer wanted to stay in the house all day, he just had to get out.

His wanting to exercise is also partly the issue of the weight he had put on. I told him that the weight goes with the medications and that he shouldn’t beat himself up too much over this by starving himself or thinking that exercise will fix this. At least 70% of weight loss is what you are eating, not what exercise you do. Unfortunately, the medications make it impossible not to eat. Until Chris is off his medications, weight will be a problem.

We discussed how long he should continue with the sound therapy. I believe we have only started. Chris said that he had to keep adjusting to a different reality and he didn’t know if this was useful or not. So we discussed the pros and cons and then he said something very interesting. He said that after undergoing the sound therapy he was no longer afraid. I’ll leave it there.