March 11, 2007

Danny, today, was exceptionally good. At his reading time, he showed a lot of interest, participating, following instructions, answering questions and even pointing with his index finger instead of using the whole hand, that was amazing !!!!

I believe that the adult autistic is able to continue learning if giving the opportunity, the right person, the right communication tools. Danny was always described as the one with the most potential. He looked so normal with bright eyes and even brighter smile. He was full of mischief, wherever set his eyes, his hands followed very quickly.

Caring good caregivers knew of his intelligence and respected him. In general, good staff respected each one of them and thought well of their unique potential. As I got to know the other autistic men I noticed their differences, big differences. To my delight and surprise I made a connection with a particular one.

Very specific in the last four years I saw their potential wasted. Staff became their guardians, the autistic were not allowed any freedoms. More exactly were sedated, so they wouldn’t make any demands on staff or were sedated under the misguided notion of "to protect them from themselves".

They decided to focus on the negatives like his head banging, we objected, head banging was drug-induced. There was no point to focus in the negatives. Good staff agreed with me, what was the point? Then on the use of "firm voice" I let that to be used, his sister objected to it, saying you are making his disability a disciplinary problem, I retracted it. I noticed that some used the "firm voice" to start to physically intimidating Danny. The excessive attention to his HB aggravated it, if he move a finger a staff would jump with "No,Danny". He was grabbed, tackled, for trivia, for moving and not just by one staff member but sometimes by two or even three and reported to his doctor as him being the aggressor. I saw that. The excessive physical response of staff to his tendency to run and hyperactivity created anxiety and nervousness and of course, made them uncontrollable. At the end he learned to lash out, blindly.

March 10, 2007

I was reading this article "State’s mental facilities duped into using drugs, Abbott alleges" written by Jason Embry, W. Gardner Selby, staff of the Austin American-Statesman newspaper.

Seeing here: http://www.statesman.com/search/content/news/stories/local/12/16/16drugs.html

The more I read it, the more convinced I was that of a too a close coincidence to explain the sudden explosion of psychiatric disorders among the adult autistic in residence care, most of them diagnosed with "psychosis" and in need of Risperdal.

In my conversations with parents, each said the same thing, "Do you know that (name of son) is psychotic?" I would add, "and in need of Risperdal?... and since 1996 or 1997.. " they would think a bit "Yeah, since about that time" and taken aback would add, "How do you know?" It was easy to generalize, it was in papers written by the group home physician. It was also the talk among caregivers and after the third parent saying the same thing was easy to reach such conclusion. Talking further with them they confirmed the dates of their son’s diagnosis. In that year 1996 the group home physician had deemed "psychotic" at least 6 of them, including my son. Some parents handed over to me, or showed me, their son’s diagnosis saying stuff so similar in between them. It was hard to believe.

What had happened? All of the sudden the adult the autistic became "psychotics" ?

Some had several other mental disorders, I think my son had the most. Now, I have a question, were the organization "duped" or willing participants in the scheme?

Looking back, the organization was always broke, always needing money and our meetings were predominantly discussing ways to raise money, caregivers and parents were all willing to work hard to raise money to improve the care of our sons. Then everything started to change in very short time, first changes in caregivers’s salaries, then the attention and respectful deference to parents changed and went on chipping power away of all people involved. Some staff from administration and caregivers were hinting that the organization had sold its soul to the devil or words to the effect. I thought a bit too dramatic. But, after talking to parents I went to the office and I asked a direct question, "Are the makers of Risperdal donating money to the organization?" Of course, it was denied. I thought, perhaps, because of generous donation the organization were bound to use Risperdal.

I read careful the article, no need to make direct donations, as the article said third-party contractors were hired to fund educational programs. At the end, more to the point, did the makers of Risperdal bought the organization?

That could explain the sudden transformation from a poor organization to an organization handling millions. The sudden development of split personalities among members of administration, one day saying this and the next moment denying saying that and moreover not able to speak their thoughts and to be or very silent (like "talking to a brick wall") or were offensive in their answers (I was told not to go alone in my meetings with them). At another times, some members of administration who in the past were assertive looked afraid of saying the wrong thing. Then another change administration became threatening or became patronizing using cliches, some relied on scripts or, enjoyed playing games when parents asked how the money was used.

At all events selling its soul might explain quite clearly the increase of funds, the increase of diagnoses of mental disorders among the developmental delayed and the adult autistic and the increase of drugs to treat their new found "conditions".

This article made me think.

 

March 6, 2007

At the end of 20 minutes of talking a single question was asked "Does he speak?" I answered, "No" , The legal aid lawyer I was talking to said, "He has no rights". Period.

An example of how Danny’s "behaviour" was impacted by staff behaviour. I remember a conversation between caregivers. One staff member had been fired because of physically abusing the autistic. One staff member, visibly upset of his firing, commented, "he should have been offered the chance to participate in an anger management program instead of just fired him". No programs of comfort or words of sympathy for my son, who was the end receiver of his anger. "He admitted to drink, he should have received help...". He was the one who roughed up Danny so he wouldn’t get "attached" to him. He was the one who told me that he took him to a strip club "I should have let her dance on his lap". Would that been his "treatment" for Danny’s autism? Then, commenting that sometimes Danny couldn’t settle to sleep, "Tylenol 3 knocks him out". Other staff members had a lot to say about management hiring "immature young guys with unresolved sexual problems still interested in experimenting with drugs". Yes, I agree. What about my son?

Danny liked that young guy at the beginning, but after taking his holidays he came back changed, he was angry, brusque and I observed that Danny was upset, scared, confused about him. That staff openly lied to me, he would say that he gave his supplements and breakfast and there was nothing in the fridge, also the pills were not touched. Danny came out of his care lips pale, dry and wide eyes, scared. Inside the car, he would stuck his face close to Danny’s talking in a threatening tone and Danny scared would roll in his lower lip, rocking in distress. It would take me a long time to calm him down.

Would having cameras prevented abused? Good staff said yes. To take the autistic to traceable places? Yes, it would help. Close monitoring by supervisors? Yes. All those combined would be excellent.

And, again, what trauma or psychological impact would have on Danny? Unable to verbalize his fears, he would act up and bang his head which would be considered "behaviours".



Staff would collect data on Danny’s "behaviours", the behaviour therapist would transfer it into colourful graphs and presented to Danny’s doctor. Graphs explained by the behaviour therapist or by one particular staff member presenting a dimmed and negative view of Danny’s "behaviours". The apparent intention was that his doctor would increased his tranquilizer or added other drugs (or more to the real intention get the doctor to admit Danny to a psychiatric ward) the graphs didn’t explain the factors behind the increased of SIB: sickness, negative interaction with staff, inability to move from excessive sedation and frustration from being unable to move. But the fancy graphs were done to look "professional".

Data which didn’t do any justice to Danny and it was a waste of staff time and waste of money.

My opinion was emotionally involved, not "objective" enough, so my voice didn’t count.

In those appointments staff were not allowed to speak if the doctor asked for their opinion, they answered in a cryptically way or their answers didn’t make sense. Until one staff member dared to explain the data contradicting Danny’s liaison presentation. I couldn’t believe my ears, I was impressed !!!

The abuse continued and Danny unable to speak and defend himself he learned to lash out in self-defence.

Entry for March 3, 2007

I observed two facts:

(a) Caring for autistic’s is easy business, most of them are non-verbal, can’t say much, even if they do in a particular way, it is rarely encouraged and is too expensive to invest in more education, we were told. And, parents are just relieved/ grateful that anybody is willing to care for them, considering the alternative which was their children spending the rest of their lives in a psychiatric ward mechanically/chemically restrained to their beds, if they were lucky to get a bed. Ironically, but that was exactly what they were doing, the difference they were just chemically restrained, sleeping 18/20 hours a day. In the later years, one autistic, in particular, slept in luxurious comfort, in a double bed.

(b) It’s very easy to make psychiatric cases of the autistic, all those "behaviour-control drugs" administered to the autistic "as a matter of routine" have, among many other adverse effects, "bizarre behaviours". They do have "bizarre" behaviours, drugs just make them more.

Self-injurious behaviour among the autistic is well-known and considered part of their "condition". As one doctors said, "they just do", others have several explanations, one of them was, "the autistic bangs their head to get attention" and, then, there are those who say is because they are feeling pain....in their guts.

Against all that abundance of theories I compared Danny’s self-injurious behaviours, it was not a match, the last one made me hesitate, could it be? Many times, it looked like he didn’t have control over his SIB, being head bangs or punching his face. In the earlier years his episodes of SIB were only happening at the group home, not at home. We concluded that the occasional use of drugs at the group home caused him to SIB occasionally.But when Danny was kept for two years on Risperdal and then taken off of it because he was showing "late onset of extra pyramidal side effects", explained in simple words he was becoming "stiff". The doctor assured us that Congentin would resolved quickly those symptoms and wouldn’t take long for Danny to get back to what it was before, he was wrong.

Among many adverse effects and serious changes on his personality, his head bangs became chronic, they were more severe, worse it was an everyday occurrence and, sometimes, several times a day !!! And, it was not only occurring in the group it was happening in our home !!!There was no doubt in our minds that the damage was done it was clear his head bangs were drug-induced. Not so for the group home management.

Then we found out about "The Alien Hand Syndrome" apparently a feature of parkinson disease, a feature of drug-induced parkinsonism and of brain injury. To us that could be the best explanation.....unless a better one is discovered.

As remote as possible it was making sense.

We had to look into a every possible explanation.

On online we found a lot of information, many were very hard to read, many were hard to understand.

Soon we became adept to see the trees from the forest and we started to understand.

People in power, in position of authority with education, whenever is money involved make decisions or say statements in which they personally or their organization would receive financial benefit and when questioned they play with words, using complicated sentences to obfuscated the average person from the plain, simple truth.

Many under pressure develop split personality. Most of them when confronted suffer suddenly from memory loss or have selected memory loss. Speaking from their sides of their mouths or thinking aloud. Usually it was us who misunderstood them. Retracting anything said before....that could affect their security of their jobs

What the autistic needs is qualified people to give intelligent, sensitive, compassionate support. Staff can make a difference in the lives of the autistic. There is a lot of money that is wasted. Money that should be exclusively to provide with individual care and attention for at least 6 hours a day. Money is wasted on psychiatrists, psychologists, behaviour therapists. The salaries of those specialists would pay handsomely for qualified front line workers, for their benefits and security of jobs. Worse staff members times is wasted taking data looking at the autistic as lab rats instead of interacting with them, getting to know them,becoming their friends. Money should be used to provide consistent activities that the autistic can count with every day as was done in not too far past. Money was wasted using electronic gadgets to show to doctors how psychiatric were the autistic and in the need of drugs to manage their out of control behaviour. Money should be used in buying electronic gadgets for the autistic to use to communicate,instead of keeping under sedation in their rooms, in their beds or sitting in chairs. The adult autistic can still learn more if given a chance.

Money used in paying for psychiatric drugs should be use to pay the salary for a good cook to guarantee healthy meals and snacks for the autistic. They loved good food. I have seen them. Money should be used to buy cameras to monitor staff members actions and to prevent abuse. Good caregivers didn’t mind that idea, they have seen bad staff physically intimidating or abusing the autistic and lying about it saying that the autistic did it to themselves and many honest staff lost their jobs after reporting them to administration. Money should be used to get managers overseeing and participating with frontline workers to see that the autistic’s rooms are warm, beds warm, bed dry and have beddings according to weather, has pillows,had pajamas and a routine of preparing for bed.

This not the end. It is the beginning of an amateur sleuthing.

Entry for March 3, 2007

On drugs adverse effects, another catch 22 game that many doctors play is if we wanted Danny off drugs we could do that but if he got "worse" it means he needs them. Of course Danny got worse; he was taken off Risperdal in the time of 3 weeks, which was too fast for him, even though it was done according to the manufacturer's recommendations.

It is hard to imagine what Danny was feeling, but must have been horrific. That too fast withdrawal caused a lot of physical pain and mental confusion, not being able to understand what was done/happening to him and unable to communicate in words for someone to explain to him. As his parents we just went into deep thought, concluding that we needed far more information.

This doctor clearly was not honest to us. He was deceiving and lying to us. He told us that Risperdal would "increase his mental focus", "increase his cognitive skills", "would need less drugs" and "it had no side effects", then corrected himself and said, "all drugs have side effects, Risperdal has less", we were sold!

And as we later found out Risperdal was prescribed because he had diagnosed Danny as suffering from psychosis and many other mental disorders that he didn't have and never had, but were the effects of the drugs. Our trust was shattered. Then, surprise! We realized that the expected support and understanding from the group home administration didn't exist. So, exhausted from this shocking realization, we wrote to the psychologist in charge of the auditing, parents had been asked to speak or write their concerns and we did, that's when administration became nasty. As I said before, whatever the parents said is shared, in that case there is no understanding of the word "confidentiality" unless is convenient for the agency to have it from staff members.

In the first years in my mind I had imagine the group home to be a safe haven for Danny and I wrote a complimentary letter to the effect. In addition, I wrote that staff members were so kind trying different ways to connect with Danny; failing those they would retreat and try again. That was "my" approach and I had the "naive" idea that everybody was the same way.

I had the idea that all staff, new and old, would spend time observing the individual ways that each autistic had for expressing themselves, then gaining slowly their trust, taking care to building rapport. Slowly I realized that some staff did that and some others didn't have a clue.

As time went by and Danny still had serious trouble recovering from Risperdal we were upset and questioned management. Then one afternoon early June Danny went into a non stop episode of abnormal movements, he was frightened looking at us and we were standing there unable to help him. His heart was beating very fast in his neck, we were sure he was about to have a heart attack and he was crying in distress, obviously in severe pain.

So, we wanted answers and we weren't getting any, we ended the group home physician services, he just had another antipsychotic as "treatment" . We also heard him say under his breath that Benadryl would have stopped that episode, he explained as a reaction to MSG in Chinese Food.

The more we questioned the more they felt threatened. We just wanted Danny back as he was before Risperdal. That request was received with sarcasm and accusations/hints of having a "hidden agenda" and of trying to "ruin reputations". Clearly to them Danny was worth nothing, they were important, my child was not.

Danny was in severe pain and staff was still given him more Risperdal, as I was told to help him through the "rough patches" of the withdrawal.

To us it was hard to comprehend how viciously vindictive these people could be and they considered themselves religious people, church-goers.

I remember talking to a staff that I've noticed roughing up Danny and without me asking he justified his behaviour with "Danny was getting too attached" to him.

Not allowing human attachment for the autistic or for Danny who wanted so badly to have a friend, it's like kicking the white cane off a blind person, giving him a physical push and telling him from now on you are going to use your eyes to see.

The autistic is people-dependent, they need human kindness, compassionate support, and they have to feel safe with their companions or caregivers.

But, all of the sudden, those who understood that were described as "emotional" or having an unhealthy "emotional attachment" and those who were cold, distant and detach, were described as "professional". It didn't take long for some staff to intimidate the autistic verbally and physically. Danny started to get mysterious bruises that caring caregivers notified me to come to take pictures.

After too many of those "incidents" I suspected that Danny was targeted for abuse, but then I observed that his housemates were also mistreated. Conversing with parents they were commenting about the injuries that their sons had suffered, the many times their children ended in the hospital. They were wondering what was going on, they also pointed the finger to a particular staff and his followers. They also noticed the increase of "crises", the increase of drugs and the decrease of their children's banks accounts.

The group home sold to parents as their children's home became a mini-institution.

Entry for March 2, 2007

I remember the selling of living in a group home. The words used were that Danny would live in "a structured environment", "he would benefit from a structured routine". Those were good marketing strategy, but they were also the biggest lies ever said. To begin with: the constant change of staff; the worse, the uneven care, some staff were excellent, some were not and how these factors affected the adult autistic? Of course affect them, was it recognized? Verbally, yes, but nothing was done instead it got worse. How many times parents vocalized their concerns saying that, at any giving time, "I never know who is the person caring for my son ?!".

The autistic, child or adult, even a normal person, needs the constant presence of a carer. All of them need a carer that has a stable personality, providing a positive, stable environment. Simple.

But it wasn't for administration or the ministry. In relation to "stability", how many times administration threatened (or I was asked or Danny's doctor was asked) to send Danny to a psychiatric ward and keep him there until he was "stabilized". I objected saying that "stability" does not come in pills. I couldn't understand why their threats changed from sending Danny home to send him to Whitby Mental Health Center, at the end, to any psychiatric ward.

Clearly, we understood these were threats based solely in retribution. I guess the more we object to the use of drugs on Danny the more threats we got.

Finally, in April 2005, it became clear. One of his caregivers phoned me to watch a TV news report about the barbaric treatment given to an adult autistic at the hands of the Ontario Government, specifically at the hands of The Office of Public Guardian and Trustee. That poor man was taken into "custody" on December 2000 and kept for 4 months in the most deplorable conditions that a civilized country could force on another human being. We are in the 21st century, seven years into it and, that autistic man is still confined behind Plexiglas walls despite his constant requests to let him go home, an abhorrence.

And, in 2001 we got the first threat to send Danny to a psychiatric ward, a place, we believed, that no autistic belongs. Now I understand. One member of administration explained to me that if I allowed or consented for Danny to be admitted into a psychiatric ward I would have lost control over his treatment, control over Danny. Danny's doctor didn't agree with them despite pressure. He was told if he allowed the reduction of Zyprexa he would be responsible if staff member got hurt or if Danny hurt himself. Here we have a variation of a unwinning "game" played for the last 100 years, a sort of a catch 22. As one psychiatrist said, long time ago, the crazy are those who say they are not, but if the patient admitted to be crazy....either way they are given "treatment".

The "treatment" in many cases is worse than the 'disease' or "condition". My observations were that drugs caused Danny to become aggressive and to bang his head. This reaction to drugs is found in a book like "Drugs and Behaviour" and many others books, it is mentioned by many psychiatrists, it is found in the papers written by the group home physician that minor and major tranquilizers, Benzodiazepines and antipsychotics like Risperdal and Zyprexa and many other drugs, can make some susceptible people to behave aggressively and/or to do self-harm. It's worse for those with autism and many are non-verbal unable to tell doctors how drugs are affecting them.

I observed how a heavily drugged autistic hurt staff. Peers were hurt, loved ones were hurt and became scared of their own children like I did. Even I was grabbed during a visit. Danny became aggressive and self-injurious while on drugs and worse off drugs. Studies have found that drugs like Risperdal/Zyprexa lingers in the brain for very long time. And, if it wasn't that scientific fact, then, perhaps, Danny was given drugs without my knowledge. Some staff acknowledged, administration confirmed, that they were allowed to carry drugs in their pockets for their own protection and to administer them if they felt in danger. As usual, caring caregivers observed that some staff abused that permission. As it happens, on December 1999, Danny, supposedly being off Risperdal since April, went into a "frozen" posture, "stuck" to a doorknob when I interrupted him he attacked me. Since then I, too, became another mother scared of her own son.

Danny's unfair "treatment" created division among staff members, there were those "close", loyal to administration, then there were those daring to stand with Danny. Then there were those who silently kept on working....and, of course, there were those who didn't care one way or another just taking advantage of the opportunistic "situations" created by management decisions.

Entry for February 25, 2007

Reading the future changes in the Centre forAddiction and Mental Health CMAH and of calling the mental ill patients "clients". Which I believe is not a great improvement. Still, it brought memories on how the adult autistic became "clients" and "programs" for the group home administration taken away with it their last vestige of humanity.

A small group of parents came up with the idea to form an organization dedicated to protect the autistic from a life of sedation and institutionalization but, once money started to flow, it became a not-for-profit business living off autism, sedating the adult autistic 18/20 hours a day or more and becoming mini-institution.

Slowly, the take over was done when the autistic came to the age of 21 and the government lose the reins. Now they can do and say anything of the adult autistic. The changes came in force 1996, the security of staff salaries were affected, caregivers were let go, parents sided with administration, after all they were short of money. Then, the quality of care went down and the parents voiced their concerns, at some meetings they were angry. At the same time unbeknowst to them, every one of their children got similar diagnosis of mental disorders and in need of Risperdal. Danny was one of them. The mother of one girl that almost died from such medical "treatment" took her home and got the ministry involved which brought on the investigation/audit whose results and recommendations were printed out in 2000, some parents read it but then many were afraid. I remember vividly the first parents meetings to "discuss" the results, none said anything but, surprsingly, administration were making light/ridiculing their concerns,unheard of! Then as the parents became angrier at the lack of quality of care and the presence of a very difficult "client", administration started to deal individually with parents. An ancient strategy to take the power away from the parents is called "divide and conquer". From then on no more "Parents' Meetings" but PCPs, like IEP in the US, supposedto focus in the strengths and weakness of the individuals in order to give him unique solutions for their future, you could have as many PCPs as a parent wanted. PCPs were approved by the government. I saw many PCPs meetings and meant nothing, did nothing, changed nothing, empty paperwork. As some groups joined together to demand from the government to empower the disabled by given them individual funding, agencies fearing losing their position of control and power over those funds joined together, which was announced at the last meeting I went.

Since June of 1999 when Risperdal almost killed Danny we were trying to protect him from all those mental disorders that he didn't have and from the drugs/meds that he didn't need. In February 2001, after one meeting with the new administration Danny's father gave up saying they are never going to listen, you can go to meetings ad nauseum, they are not going to listen. So, I did, I went to hundreds of those meetings and effectively I was never listened to. After some meetings, some were private meetings or phone calls with administration or with representatives of the Ministry, I found, to my surprise, that whatever concerns, thoughts, ideas I communicated to them privately.... were repeated to me by some members of administration and by some caregivers "close" to administration. Clearly, there were no respect, confidenciality or secrecy. Then those new staff hired as "watchers" were openly criticizing the organization as "evil", the country's government treatment of the disabled as "barbaric" and some staff's actions like "trying to break Danny's spirit". Some staff even went to tell me that if Danny were their son they would have taken him home and, after an incident in which Danny had ended with large bruises they would have called the police.

And, each one of those words stayed in my memory and by not reacting I had allowed his torture and torment.