Justice for Danny

  There are people who has no shame on feeding off the misery of other people, making a high living out of it. That’s the conclusion I arrived from my observations, of my experience dealing with the administration of the group home after Risperdal caused serious adverse effects, almost killing Danny. It took me a long time to open my eyes and see the truth,...these people were not there for Danny, they were for the money that the government provided for his "care" and.... damn Danny!
The beginning of this particular group home tells the story of a group of parents who got together in 1974 to found a home where their autistic children would live a better life. They thought life in an institution was not for their autistic children, they believed their children could live a life free of sedation, free of physical and chemical restraints. Thirty years later this "principle" was deleted from its history, according to one of its psychologists the "treatment" of the autistic has "evolved".... to me it has "devolved" to barbaric times. Still in 1990 when my son was admitted at the group home such mentality of relying excessively on tranquilizers existed, but we didn’t know that. We thought Danny would be cared for with the same level of respect and compassion that any normal human child was entitled to and more so a disabled child. We were wrong.
We also were ignorant of the damaging effects of these psychiatric drugs on the autistic, worse in our son’s particular "autism". Parents and caring staff openly talked about "meds" which gave us the wrong impression of talking about "good" medications which in reality psychiatric drugs are not. They are given many names besides calling them "meds". In the 1970s average people called them "uppers and downers". In the autistic world, in the 80s and 90s they were described as "behaviour-control drugs". In books about medicines these drugs are called "minor" (Benzodiazepines) and "major" tranquilizers (neuroleptics/antipsychotics). In the late 90s they were called "downregulators" or "upregulators". Basically these "meds" are sedatives or stimulants with fancy names but with same sort of adverse effects. They are man-made chemicals foreign to the human body: blocking, suppressing, inhibiting normal body function; causing metabolic changes, taking away nutrients creating a "chemical unbalance".

 

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Neurotoxic drugs whose effects are sought of, which is to immobilize/paralyze a person. The person becomes "stiff" unable to move, with time develop what is called drug-induced parkinsonism. These neurotoxic drugs so severely damage the brain that their effect is called "lobotomy by prescription". The use and abuse of these drugs exist in places where there is no understanding of autism compounded with total indifference towards the well-being of the autistic.The government could play a stronger role in controlling how much and how many drugs are given to the autistic. Moreover it should mind experts on autism who agree that drugs do nothing for the features of autism, but aggravated them. A well informed and caring government could offer a drug-free environment for parents who believe their autistic child is better off free of drugs. A caring well-educated government would have an independent lab test the level of drugs in the autistic to prevent over-drugging. Many times boredom and lack of activities are behind the autistic anxiety, SIB and aggressive behaviour and some staff recourse to give them PRN drugs, as consequence I saw in the last years, as a norm, the autistic sleeping 18 to 20 hours a day including my son.

Autistic cared by unsupervised staff are easy pray to abuse. I described what I observed to different members of the board of directors and to different members of administration. Their inaction allowed the abuse to continue and by doing nothing they were as culpable as those abusing the autistic.Their physician wrote the prescription for drugs and staff had permission from administration to administer them as they saw fit, according to administration in their own words, "for their (staff) own protection" and, may I ask, who is protecting the autistic from being over-drugged?
Of course, as in any organization contracting out their responsibilities, I found excellent caring people among the front liners workers, they were responsible caregivers that took the time to "bond" with their autistic charges, took their time and effort to get to know them, to build trust, rapport, to respectfully serve their needs, to encourage them to learn, they sang to them, played with them, took them out consistently, took trips to Florida with them, those caring staff worked hard, were resourceful and positive and advocated for their autistic charges and then, there were those who couldn’t understand the concept of "support" let alone "compassionate support". They severely lacked training and interest in learning how the autistic communicate. They didn’t know how, didn’t want to or couldn’t connect with the autistic. Those were the ones who caused trouble for Danny. But more trouble came from new policies from the new administration.

One day in 2001 I found staff reeling with anger because from administration came a policy of not showing affection to their autistic charges, they were not to touch, not to hug them, not to kissing them. Upset caring staff were saying the autistic were like children they wanted affection, they need it, a little hugging made them happy. We are talking of the adult autistic who has no idea of the value of money, but any show of affection was for him like winning the lottery. They reflect staff mood, I have seen that, if the autistic senses staff is in a good mood, smiling, they too smile and do their happy dances.
Administration was grand at playing with words saying that those staff who stood up for their autistic charges were "emotional" they "had an emotional attachment to...", insinuating with it that staff in order to be "professional" cannot have any kind of connection, any feelings, any rapport with their autistic charges....staff have to behave like unfeeling robots and get immediate compliance from their charges without any coddling or playful interaction, no singing, counting, nothing....I wonder why? Because of the false assumption that the autistic has no feelings? That they do not feeling pain? Or, perhaps, they assumed autistic are subhuman beings? Non-humans unable to feel emotions? The assumption that because the autistic cannot speak, have no intelligence? And so, denuded of their humanity, what were they? They weren’t animals, but for some staff they were not even worth of the care and compassion given to animals. Denied of their humanity thus do not deserve love... Or, by denying love and compassion to the autistic in their care were themselves exposing their lack of humanity?
Or, we were dealing with "professionals" unable to deal with emotions, unable to give affection, to feel affection?
In October of that year or in 2002, a behaviour therapist, or psychologist, showed me a video tape. In it I saw staff waking up Danny, there were four mornings, four different staff, their angry, unpleasant, aggressive ( i saw a female staff push Danny with her knee very fast), cold "approach" was described by him as "consistent" so his conclusions was that the "problem was not with staff..."
The feeling I had was that these "professionals" had trouble dealing with affection, a staff can be professional and sensitive. As caring staff were saying, "we are caring for human beings", "we are dealing with disabled human beings who are people-dependent". The moment that the "professional" saw Danny’s disability as a "disciplinary" problem it was like considering his disability a "crime". A crime punishable by abuse and mistreatment.

Or, perhaps, the "professional" thought he could "cure" his autism by being tough with Danny.

As his disability was "criminalized" the use of these disabling drugs were justified because Danny, as a "criminal", didn’t deserve nothing pleasurable of his own choice. I remember telling a doctor how Danny, fifteen at the time, was able to play video games and his response was "My 4 year old grand daughter can do that", meaning unless Danny was a rocket scientist his life was not worth of enjoying it....
Someone said, "As a society we are going to be judged as how we treat our less fortunate among us....".

Drugs' Adverse Effects

Some effects of the drugs were imperceptible, some were obvious. Staff, who knew Danny well, reported them to the doctor who, many times, dismissed them as of no significance. Incontinence, the most obvious, was dismissed as "Risperdal blocking an extra serotonin receptor". Others like pain at the tips of his fingers were imperceptible.

I remember that moment, it was a weekend at home he had started to colour and, suddenly, with pain on his eyes run to the kitchen turned the tap on and run cold water on his fingers, then with concerned eyes looked at his finger wondering what was going on. I thought the crayons accumulated under his nails was causing him pain and tried to clean them with his nail clipper but it was too painful.

Years later researching the drug Risperdal  and its adverse effects I read that it numbs or kills peripheral nerves ends. The sensation was described as numbing, or as pins and needles, or as burning or sharp pain. Risperdal affects another bunch of sensitive nerves located on the penis, the effects is called priapism: sudden, painful erections. Danny had them waking him up in the middle of the night and his own way to deal with this problem was to talk to his organ saying: "Don’t do that" or squeezed it down. I observed it but I didn't know what was it and couldn't think what to say or what action to take. It just stayed in my memory. Of course it was seeing as another "oddity" of his condition.

On drugs Danny developed a sort of  "dances" while walking that weren't there before, noted by caring staff and were found "funny" by other staff, something to laugh about. It was thought  done "purposely" because Danny smiled while "dancing". For the group home administration it was proof of "mental illness".

The mayor abnormal movements caused by Risperdal, as the physician wrote, were "late-onset of extra pyramidal side effects" a.k.a. parkinsonism, akathisia, tardive dyskinesia, etc.

At some point Danny showed concern at losing control of his body as it got worse, down frightening. "Bizarre behaviours" is another adverse effect but I would described them more as blind "bizarre impulses" for instance his tendency to run became unstoppable that was seeing as "his" hyperactivity. His opening and closing of the car door while I was driving was another dangerous Risperdal-induced behaviour that went under his "OCD" and as each autistic is different they all had their own drug-induced "bizarre impulses".

Drug-induced seizures were explained as "The autistic tend to develop seizures in their teens" we could have believe the physician if a staff didn't tell us that Danny was kept sedated from Monday to Thursday in 6mg of Bromazepam 3x/day. Clearly his first grand mal was brought by sudden withdrawal of Bromazepam. Danny was kept sedated to prevent him from pulling the cast on his arm. He had a severe injury on his arm after hitting a windowpane in the group home washroom. We observed similar "behaviour" after giving him Ativan, Tylenol #3 and Benadryl as recommended by the physician. We thought nothing of the last two, their names familiar to us, and suspected the unfamiliar one: Ativan. Eventually we learned that  Bromazepam, Lorazepam all drugs that ended on "pam" and Ativan belonged to a family of drugs called Benzodiazepines a.k.a. minor tranquilizers and they can induced seizures not only by sudden withdrawal, they are highly addictive and make some people to act violently. And, that Tylenol # 3 was called Atasol and had codeine in it. There have deaths from the use of Atasol. Benadryl, a cough syrup, a suppressant, its formula close to Cogentin in its use as treatment for extra pyramidal side effects, they are anticholinergics, anti parkinson agents and some people react in a  "paradoxical" manner to them like Danny did.

 

My words to described to the psychiatrist his drug-induced parkinsonism or EPS were "catatonia" "out of it" "getting stuck" "holding frozen postures", for reasons not clear to me staff didn't agree with me so they came up with their own words saying Danny stood there "like lost in thought" "like gathering his thoughts". Getting "stuck" mentally and physically were considered part of "his" OCD nothing to do with Risperdal. The most dangerous part of seeing Danny "stuck" was to interrupt him, he would suddenly and unexpectedly head butt staff or bang his head screaming.

Risperdal continued damaging Danny's brain and central nervous, what is described as "tardive", late onset. He would have "seizing" episodes in which he had no control or even recollection. One episode came about when needing to urinate badly during a car ride with me, I stopped the car on the first country road I could find which still was fairly busy with rush hour traffic. He went behind the car towards the bushes, took his time to pull his pants up and, then, got "out of it" circling the car spinning slowly with the head resting on the car window pane, I knew I shouldn't interrupt but I sensed he was about to head bang so I tried gently with low soft voice to get him inside the car, there was no response. I could do nothing but watching, he proceed to fix his eyes in a point on the back passenger window pane and moving his neck and head stiffly, like a robot, very fast, hit it hard backwards breaking the glass in small pieces. Danny immediately came out of his trance looking at me questioning with wide eyes if he had done that. In the past "questioning" with his eyes after such episodes was negatively interpreted as Danny showing "remorse" for his "destructive behaviour". We argued that such bizarre "behaviour" was never seen before Risperdal but none on administration who suppose to know Danny for 9 years dared to agree with us, doing that, apparently, would be like accepting responsibility and of course held liable to us. The increased on his hyperactivity and lack of control of his impulses were explained as part of his "condition". And, drug-induced inability to move to follow orders as staff demanded was thought "behavioural" and it was described as "non-compliance". His drug-induced negativism "No, please" got the worse of some staff who got angry with Danny. Which prompted a particular staff to write on his "protocols" that the way to deal with his "non-compliance" behaviours was to "be firm" to which his sister objected to because it made his condition a disciplinary issue which it was not the case. That staff was verbally telling staff and even to Danny’s sister that "Showing him who is the boss" "Who is in charge" got Danny going.  Yes, anybody would comply if apply enough force, from "being firm" to physical intimidation and to abuse was a very small step.

****** The more Danny was accosted and tormented the more he got stuck on "dances" and routines.****

A caring staff concerned at several Risperdal-induced adverse effects and wrote about them. Here we have to remind the reader that Danny was also given large amounts of Valproic acid (VAP) for "seizures" and as "mood stabilizer". Disorders he didn’t have. Anticonvulsive drugs share similar side effects with an atypical anti psychotic: bizarre behaviours, rages, psychosis, emotional liability, abnormal movements and so forth. So, Danny was given two neurotoxic drugs. At one point Danny was on VPA and Tegretol , another toxic anticonvulsant similar to VPA and staff wrote about its effects on Danny's manner of walking, doctor was unconcerned.

We thought of anti seizure medicine as such, medicine to treat seizures in people, children and adults. However staff wrote that VAP given to Danny as "mood stabilizer" it made him more unstable and they observed Tegretol caused Danny to walk back and forth. On both drugs Danny was found sleepy "not functioning" the same prescribing physician. While I was doing research it took me a long time for me to see and believe what I was seeing that meds for seizures were as bad or worse than the atypical antipsychotic like Risperdal. It was baffling. It took me a long while to accept that these drugs: VAP and Tegretol, were neurotoxic more so to a chemical sensitive autistic like Danny and the unnecessary large amounts given to him were behind of some of his "odd", SIB, aggressive behaviours.

We didn’t know the real purpose of using "behaviour-control drugs". However as time went on we realized that its final goal were to "immobilize", to "stiffen", to induce "parkinsonism" on the disabled person to make him unable of making demands on staff, moreover these drugs make them mute. Tegretol, for instance, took away Danny’s little speech. Risperdal, on withdrawal or on PRN, induced such a severe episode of constant movement so intense and lasted for so long we were sure that he would drop dead of a heart attack. His need to move in the most erratic manner, doing circles or spinning was seen as "his" own doing like "evasive behaviour". His drug-induced changes in "moods" as bipolar. But without a doubt the most scary drug-induced behaviours were aggression and banging his head or SIB also described as "rages".
Risperdal was stopped after causing severe "late-onset of extra pyramidal side effect". The doctor ordered done in 3 weeks time. Cogentin was added to "care" of his slow movements but instead it accelerated them.

After the episode of constant movement that we thought he was about to die of a heart attack, the posturing followed by head bangs increased. We were fearful for Danny but I was never afraid of him, that changed on Christmas Day 1999 several months after Risperdal was stopped, if it really was stopped. That day Danny "froze" after taking a shower, there he was stark naked "stuck" turning a doorknob for hours. I fed him there, music was on, I sang to him, promised MacD, KFC or coke, nothing! After 5 hours thinking if I used authority voice I would shock him out of of this trance I told him to go back to his room...suddenly he turned towards me with an ugly face trying to grab my arms to head butt me. I escaped twirling my arms and running to the basement, he went on to bang his head on the kitchen countertop. Since then I was scared and never wanted to be alone with him and his father had to intervene if I saw him getting frozen.

The only other episode in which he blindly attacked me was after he was given Thorazine for a very short time. He was 11 and in that day February 1986 we had had a very long day, we had an appointment at the Hospital for Sick Children, I forgot what for, I do remember that it took hours to see the doctor. I kept him busy with his math and spelling and promises of a car ride and goodies after picking up his siblings from school and he had been very patient. But, then at the very end, catastrophe! The car broke down in the way out of the store leaving the parking lot. I thought no problem we were very close home, we'd walk. But Danny couldn’t leave the car no matter how much I explained and I talked, finally I tried to pull him out and when he came out, he angrily wanted to run without looking, we were by busy rush-hour Yonge Street so I grabbed him and he fought me very hard. Across the street two young policemen saw us struggling and came with their cruiser, with the help of the police we got him inside their car where he, still fighting, punched me breaking my glasses but once the car moved he came to himself, all smiles. He went in the house, sat in the couch happily with his "goodies", still thinking that it was "behavioural" I punished him by taking them away, Danny looked at me with wide eyes in surprise wondering if I had gone crazy. It was clear that he didn’t remember his "tantrum". Later corroborated by some staff that he was not aware during those "episodes".

Many years later I learned that all these drugs: minor and major tranquilizers,  also called Benzodiazepines and Neuroleptics, typical and new atypical anti psychotics, anticonvulsants, antihypertensives, "sleeping pills", painkillers like Atasol or Tylenol #3 with codeine are behind these 'out of it" episodes, SIB and aggression. Among many other names it's also called "paradoxical reaction". It could happens to anybody, normal people, usually children, the developmental delayed, the elderly and the elderly with dementia. What make them susceptible to have a "paradoxical reaction"? There are  way too many explanations. In my son's case the group home physician blame the P450 izoenzymes in the liver.

******** One staff reminded me of the Thorazine-induced "incident" as proof of Danny's "innate" aggressiveness. I guess he never read the group home physician writing about "paradoxical response" to drugs. I kept on repeating to administration that I was never scared of Danny before Risperdal. Danny and I we had an understanding and we loved and trusted each other very much. Danny would have never tried to hurt me consciously but under the influence of these drugs yes he did blindly, not aware. The Thorazine-induced "attack" was not the same as Risperdal-induced attack, the latter was far scarier. Danny was a child then and in 1999 he was a young man, slender but stronger and taller than me, so I became scared of him. Very coincidental, after several of his group home mates were diagnosed as "psychotics" and given Risperdal, mothers were saying one after another "you know my son is psychotic?" and "I am scared of my son".

A coincidence! ********  Or, ultimate goal?

Now I can say with total certainty that the "routine" use of drugs were behind all the "crisis" my son went through. At home before Thorazine we just had to watch Danny, he was a busy boy, had a selection of electronic gizmos to play with. After Thorazine his autistic behaviour became unexpected and erratic, urinating on his bedroom floor, had bizarre impulses like climbing on a pile of desks and trying to throw a chair through a window, the screams of teacher and co students saying "No","No Danny", "Don’t Danny" made matters worse, in that state you need to remain calm and to tell him what to do but his teacher insisted that he needed to learn the meaning of "No" saying it angrily and in a scream. Got to the point that I decided to follow the advice of our Geneva Center worker and get him into a "Treatment Centre" which at the end I was told it wasn't but was a regular "school". Well, apparently Danny liked this "school" for a little while then problems came up with Danny not able or didn’t want to get ready to go to school, a way to tell us that something upsetting happened to him? During our car rides if we went too close to that 'school' Danny would say, "No, please". Was a combination of the effects of Thorazine and inadequate support? Very possible. School people were telling me something was going on in there, he didn’t want to go to that school and once inside the school he didn’t want to go to the washroom. More disconcerting twice he passed blood in his urine...I went there hoping to "see" something, the only thing I observed was anger, angry teachers... angry at my presence? Danny was a quick learner and loved to be challenged in math but apparently at this "school" he was "kept there" and giving the same math sheet over and over "to keep him busy". No wonder Danny was feeling unwelcome there.

***********One observation, I noticed that the "ideal" disabled is the one that does not make any demands and sits quietly in a corner completely invisible *************

Danny was admitted to the group home on April 1990, by November we were shown a tape Danny head butting his liaison, in that tape Danny looked dazed, so we suspected drugs, but we dismissed that idea, besides they wanted us to to go to our doctor to get a prescription for a tranquilizer. Danny first episode of banging his head happened at the group home in February followed by an episode in which he received a severe cut on his arm from hitting a window pane in the group home washroom. We were left wondering, Danny never gave us this trouble. One day his liaison wrote that Danny on Ativan was acting, talking like "normal" I decided to see it at home for myself. So on Saturday morning I gave Danny Ativan, Tylenol 3 and Benadryl as doctor suggested and sent him to a "program", the director called me asking me what did I give to Danny because he looked "doped up". I was left speechless I wasn’t expecting that! Later that night around 1 am Danny wanted to go to the washroom but instead of using the toilet he tried to bang his head against the window so, timidly, we suggested to administration that Ativan could be behind this sudden banging of his head or head butting. Of course there was no major response.
After so many years of observing and reading I came to the conclusion that drugs did cause or aggravate aggressive and self-injurious behaviour (SIB) on some of the autistic.

********That some drugs make some people violent is knowledge found on 101 books of medicine and if it could happen to a "normal" person chances are higher for someone as fragile, or "chemically sensitive" as an autistic.*******

I decided to get to know the home where Danny was living, I got to know the staff, the other adult autistics living there, the parents and even some people in administration. I had to understand what was going on. I was appalled at what I saw, Danny didn’t have a proper made bed or a comfortable one to sleep on, no pillow where to rest his head. The quality of care was uneven as the culinary skills of staff, Danny survived on peanut butter/ nutella/ jam sandwiches. Not to mention the cleanliness of the washrooms. No wonder the autistics had all kind of gastrointestinal problems. Danny had so much trouble settling in or having a good rest, the group home rely on tranquilizers to get Danny to accept these appalling conditions.

********By 2001 the conditions got worse******

I remember one day I found staff talking excitedly then I saw yellow leather gloves every where. Staff told me that administration had provided staff with those gloves to protect their hands from another autistic young man, we will call him "Tim". Tim came late in 1999 and according to some staff was "severely psychotic". In 2002 Tim was given a new drug or increased the dosages of his drugs and has taken to scratch hands but the episodes were so suddenly that many times there were no time for staff to put the gloves on. So as I watched I saw staff hurt by Tim. I saw a new staff (a young female) crying while another staff cared for the deep scratches in her hands she got from Tim. Staff was talking being suddenly grabbed by the head, suffering scratches. Suddenly, with no precedents, being pulled down on the ground by the hair, one of those incidents I happened to be present and I intervened, staff came running, told us to leave the kitchen but at the last minute I looked back to see Tim on the floor hands up as hooks and the female staff kicking him, I don’t know if she made contact.
At another time we were sitting in the living room talking when Tim came in walking around with eyes half closed then sat down, I thought he was going to sleep, for some reason I stood up and suddenly he grabbed my head so fast, my glasses fell off, I was left in shock I didn’t see it coming, there was no indication, no clue of that about to happen, I thought that was it, but caring caregivers said it was not and springing into action they gently laid him down on the couch he was having a seizure. I am sure it was a drug-induced psychotic seizure, his face went gray, his eyes up flickering, his hands stiff like hooks, finger nails digging into the hands of a caring staff who was holding his hands down, as I was explained later to prevent him from hurting himself. After it was over he was given another tranquilizer, this time a even more powerful that he had as PRN and fell asleep, to all of us present there it was sheer senseless! Staff was saying that he was on a "cocktail of death".

*************In base of my observations I had concluded that drugs used as "behaviour-control drugs" or as chemical restraints, cause some autistics to hurt themselves, hurt caregivers, hurt family members, not to mention the adverse effects of long-term use of these powerful neurotoxic drugs*********************

Risperdal made it impossible for Danny to move, sometimes couldn’t get out from the car for hours or get up from his bed and when he finally moved he would bang his head, where staff would forcefully sat him on the ground restrained him physically. The first time I saw him physically restrained I was shocked and I expressed my concerns to administration who sarcastically scoff at my suggestion for a more gently restraint. I explained this physical restrain looked to me more like punishment for something that was beyond his control, to me this "new behaviour" was induced by Risperdal. Still staff dealt differently with this "new" Danny, some were very compassionate, they sang to him, others sang and count, others make deals with him and gave him time alone to proceed. I approved of this gentle treatment but then came along this ex-jail guard with attitude announcing that more drugs and "to be firm" was all Danny needed. He was speaking openly that Danny needed "to be show who is in charge". Seeing how easy was to physically intimidate Danny into moving/"complying" some new staff used and abused him. New staff did as taught. Now when Danny was in large amounts of Zyprexa, he just couldn’t move, he was "stiff" I remember seeing Danny being forced to move, two staff carrying him by the arms, Danny screaming, urinating and/or defecating on his shorts in the way to the washroom. His head banging intensified so much that his family doctor "demanded" that the group home make Danny wear a helmet and he called me to make me understand his "demand" and to take him seriously. All the while I kept asking to lower the dose of Zyprexa. Even his psychiatrist wanted to lower his Zyprexa because he was "no-functioning" but administration was saying that any reduction should be done in a psychiatric ward. Many times I saw him sitting alone in front of his breakfast for hours twirling stiffly his fork, flies in and out his helmet, other autistics stealing his food and Danny getting upset crying "no, please". These were horrible times, inexplicable in its cruelty.
Danny was deprived of everything that could make his disability bearable, no love, no food, not a good night sleep, no dignity, no activities of his own choice. He was constantly terrified and made feel as worthless trash. Caring caregivers did their best to protect Danny without losing their jobs. After seeing Danny sleeping on a cold vinyl mattress 6 inches off the a floor constantly flooded with urine because of his drug-induced incontinence I asked to replaced his "broken" original bed, custom-made by his father, with a similar one of same quality, given a proper mattress, pillow and bedding as the other autistics in the group home had. Danny was not a destitute and we were not living in Dickens’ era. I was told that Danny will get a better mattress after he "save" his money, there was no other way. After 8 months the new mattress arrived and one morning I saw Danny lying on a pool of his own urine because the mattress was waterproof. Right away I bought sheets and waterproof mattress cover. Next time I was there they were gone.
I argued drug-induced incontinence is preventable, just stop giving Danny tranquilizers and stop terrifying him, but that was no the way seeing by administration tranquilizers were needed to stop Danny from banging his head, it didn’t matter if their own charts showed a decrease when Zyprexa was lowered or while he was off Risperdal. It was upsetting to see Danny dealing with incontinence, clearly it was humiliating. I saw him wetting his pants or urinating every 45 minutes, defecating on his pants. Staff relating how Danny wet his pants while sitting on his chair. Staff telling me that Danny was scared of that particular staff wetting his pants just seeing passing by so scared was of him. I saw Danny crying when in the way back from a doctor’s appointment the man asked him what he wanted to eat, crying said "McDonald".
While Danny was off Risperdal he moved easily and incontinence faded. So, when administration demanded the doctor to put Danny again on Risperdal we were astonished. Even though the doctor agreed on a very low dose of Risperdal Danny started all over again unable to move, urinating in our cars, not to mention head banging and something new: punching himself. I was thinking incontinence just happens to Danny so I asked staff if the other autistics were incontinent they did not answer but when I was a passenger in the group home vehicles in the way to doctor’s appointments and not matter how much they cleaned the van stank worse than our car. Then I saw others with wet pants, so Danny was not the only one. Let me point out that before the introduction of Risperdal the home vehicles were fairly clean and our cars were in perfect shape.
It just leaves you shaking your head..... how could these people stand it?

************************

The last months at the group home Danny was watched over every second and if he tried to scratch his head a staff would jump saying "No, Danny". By now Danny was lashing out, hurting even his favourite caregiver. A week before coming home a caring staff told me that " I don’t feel safe caring for your son, he is being primed for violence". He was off Zyprexa and by what caring staff reported to me Danny was being provoked verbally, not allowed to eat or sleep and sometimes woken up suddenly by a drunk staff. No wonder he came home weighing 129 pounds, skin and bones.
Before Danny came home for good he was getting more and more nervous, how long was he going to tolerate being abused? I was wondering how could I bring him home? I was terrified watching his aggressive behaviour. Will we manage? While I was pondering how to adapt the house and prepare his siblings to Danny home coming, he learned to defend himself, he had the fastest karate moves I had ever seen, even an amateur boxer run scared of him. At the group home staff was allowed to watch boxing, violent movies, so ok, did Danny learn from them? But his new learned self-defence started with self-injurious behaviour and staff crowded him to physically restrain him, so if he saw them slowly coming up to him he would get even more nervous, screamed and would try to punch himself or karate punch/head butt in self defence. I learned that twice had hurt his favourite caregiver. That couldn’t continue. Victoria day, after a long time, I brought him home, he was so happy, I was telling him, "Danny, you’re staying home for good" but his caring caregiver phoned she was back and to take him back, so I did. Danny never trust me completely from then on.
But, next weekend, suddenly the opportunity to bring him home presented itself, his caregiver had decided to sent him to a campsite for a "vacation" but next day a member of administration called me at home that Danny was in such state that they were afraid that he would kill himself or kill staff and of course they wanted to take him to a psychiatric ward but I said, "No, he comes home". So, Danny was hand over to me by that member of administration and scared as I was I just run with Danny. At home Danny was a nervous wreck, checking every door to see that they were locked, sometimes getting up at night to check every room over and over. He was so nervous he couldn’t eat, if I got too close he would hyperventilate ready to attack anybody that got too close to him. Episodes of frozen postures and head bangs came and went, broken walls, broken window panes, hospitalizations, he was evaluated by two specialists found autistic, nothing else.

********** That’s the way the home administration wanted to present Danny as a danger to himself and to others, to convince other doctors that he was a very dangerous individual. That’s why I saw doctors running scared of Danny. The main purpose for the home was to justify the excessive use of tranquilizers and their demands to get him admitted into a psychiatric ward. Now, several years later in my care, drug-free, he is recovering from the abuse slowly ***********

Summarizing, drug-induced behaviours were reported to the home physician by staff and he explained them away as part of his condition, "idiosyncratic" was the word he used. It is true that the autistic has some "behaviours" that can be misinterpreted as psychiatric this fact makes the non-verbal autistic "ideal" for psychiatric "treatment/experiment" but in the observation of the autistic behaviour another factor is not considered and is the interaction with people.
So from the outset everything plays against the non-verbal autistic:
1.- They are considered "mental" even if the condition is described as "neurologic" is treated as psychiatric, no difference.
2.- The obvious, they can’t speak, so how the non-verbal autistic can tell the doctors how drugs are affecting them? They have only their "behaviours" so in distress their behaviours increased, get more nervous if mistreated by staff but...
3.- Their distressful behaviours, drug-induced or staff related (mistreatment or inadequate support) are interpreted as an increase of his "idiosyncratic behaviours" or as a consequence of an underlying mental disorder like "psychosis" "bipolar" "anxiety" etc, etc. drugs are increased and the autistic gets in the merry-go-around of drugs.
4.- They are so easy to get them addicted/dependent on drugs
5.- Another obvious: they cannot complain and
6.- they never get better, a bonus for the drug manufacturers. They go from "crisis" to "crisis" of violent episodes of aggression or SIB.....and at every increase of dosage or adding of a new drug, they just sleep 18 to 20 hrs a day becoming the "best" "ideal" disabled, quiet, invisible....
7.- At the end they gain weight, become diabetics or, totally "stiff" dying young from "living" in a "cocktail of death".

**********************

Parents, I never understood the attitude of some parents, were they intimidated into silence? Were trusting individuals? Or, they give up on their children. I was told, yes, they were afraid of retribution, afraid that staff would take it off on their children, some even believe that the group home in all its power was entitled to make decisions regarding the well being of their children as it saw fit. At one point parents were united on the purpose to work together to get the best for our children, all of the sudden that ended. "Divide and conquer" worked. A total mystery to me, they looked intelligent and educated, I got excellent advice from some of them and still. Conveniently everyone involved close their eyes to the excessive use of psychiatric drugs on the autistic until some of their children got hurt, then they negotiated ,with lawyers involved, a better place for them. Excessive use of drugs on the autistic is without doubt a bonanza for the drugs manufacturer and ultimately for doctors and agencies who would receive lots of money through them and government’s sources because drugs make their already "complex cases" even more "complex".
Simple equation: more complex = more money.
We are talking about a "condition" that has no treatment, doctors "treat" the "behaviours" and so the person born with it or acquired as a toddler does not improve. Man-made drugs, synthetic chemicals foreign to the body take away instead of nurturing. Make some autistic crazy violent and other grossly obese to end as diabetics.

**********************


As I was saying, one of the most humiliating adverse effects brought on my son by the use of drugs was urinary incontinence, as time went by also became fecal incontinence. As a toddler I had a hard time potty-trained him, but when I did it was a major triumph. Adventure Place teachers played a great role on it. He needed to urinate every 2 hours and he was a "regular" before his everyday shower.When he started to urinate on his bedroom floor after Thorazine, it was assume it was a "behaviour" by his Geneva Center worker who advised us to use an "aversive behaviour modification" program that after a year we gave it up and, I was told its "failure" would be blame on me, as his mother, for "not following the program".
His incontinence came back started after being 7 months on Risperdal 1.50 mg/day his liaison wrote that "something curious happened Danny wet his bed". It went worse, after almost 10 months he needed to urinate every 45 minutes, which was needless to say disturbing to Danny. I remember while in car outings with him and still able to convey his needs he would verbalized "go bathroom" rocking side to side frantically, getting louder, with every second that passed, looking desperate for a washroom or wanting the car to stop so he could void on the side roads. He didn’t want to wet his pants that would be very embarrassing for him, that much pride he still had left on him. He also got to know that gas stations had washrooms so if we stop at one he would run towards it while I run to get the key. Commenting over his incontinence some caregivers laughed embarrassed, but that was no joke for Danny. As a compromise caregivers thought a good idea for Danny to urinate on country roads which was perceived by some people as a "pervert exposing". After 9/11 stopping to urinate at country rods became even harder, people saw him, took my plate number and next I knew police was at my door. People see autism in children but do not recognize it on adults. The general assumption is that the autistic child "disappeared" as adult safely kept away in a institution or group home and on "meds". People, including doctors, are ignorant of how drugs affect the autistic.

******************

Responsible caregivers and more about "meds".
One of Danny’s liaisons was so concerned about the detrimental effects of Risperdal on him that he talked to us and then wrote a letter to the doctor. For his caring independent initiative he left the group home because "his father got sick". A pattern I noticed when caring staff stood for Danny or simple cared for his well being, they quit or were fired. According to administration it was wrong for staff to have, the exact words were, an "emotional attachment" to their autistic charges. Administration criticized as "too emotional" the interference of some caring caregivers of the treatment that Danny was receiving. While the bully liaison who said that "he worked for...and didn’t had to be friends with Danny" was considered "professional". I was shown a tape in which 4 staff would seeing waking up Danny, the psychologist saw "consistency" in their approach while I saw cold, uncaring, threatening, angry, institutionalized care and even saw one pressed her knee on his side to get Danny moving.
On the use of drugs, I was told several times, that Danny was given Ativan about 6 or 8 times in all those years, but "he did receive therapeutic levels of Atasol" which was news to me, no doctor wrote a prescription for Atasol as PRN for Danny. I never heard of Atasol, looking it up I find out that Atasol is Tylenol 3 with codeine and caffeine !!!! I was left wondering why the need to switch Ativan for Atasol, both are as bad. Again, later on, I was presented with a list of drugs given to Danny in which is mentioned Atasol. Given in large amounts if that was the "therapeutic" levels approved by the doctor or manufacturer, it could be harmful for Danny. It is not mentioned the strength of the codeine in the particular Atasol. But as we read the doctors’s reports that was not totally true, Ativan was his PRN from the start and staff was allowed to take Ativan in their pockets while in outings with Danny. As they were unsupervised there was a strong possibility that some staff abused that permission. So a protocol on the administration of Ativan was done to prevent its abuse. But staff was still left unsupervised in possession of drugs no prescribed by Danny’s doctor and confirmed with impromptu information by staff telling me, "If Danny can’t sleep Tylenol 3 knocks him out".
Reading the group home physician reports we notice how he systematically covered up the drugs’s adverse effects by diagnosing psychiatric disorders in Danny, conditions that he didn’t have, saying anything, everything but to avoid blaming the "meds" or the lack of adequate support. Nobody contemplated the possibility that life in a group home was not for Danny. Moreover "the structured environment" that a group home could provide is a myth. The care is uneven as its best and its reliance on drugs endanger not only Danny’s life, staff but of his loved ones.

******************** We can conclude the excessive reliance on psychiatric drugs in the care of the autistic endanger not only the life of the autistic but of all involved directly on his care *******************

Interaction with front line workers. Firing staff, as I started to notice that any staff who dared to talk to me or suggest that the changes on Danny’s mood/behaviour were drug- related was promptly removed. In the past staff commented how well Danny got along with some of them while ignored the rest. I would say that’s typical behaviours of anybody, why Danny couldn’t have favorites, why he couldn’t choose his friends?
In general, the "treatment" of the autistic is an outrage, is an outright abuse of their basic human rights. I found out while seeking legal advise I talk to a legal aid lawyer who asked me if he could talk, I said no, "if he can’t speak, he has no rights" was his answer, thus the autistic are not human enough to be entitled to the protection under human rights law. There is a misconception that because the autistic can’t speak has no feelings, we found differently as others did: "Behaviour is communication" for the autistic, but those same "behaviours" can be read any different way. Also, for the average person, those behaviours seen as harmless in a child are scary and dangerous in the adult. So, it’s easy to read distressful behaviour in the autistic as psychiatric when they are calling for help.
We found that nobody care for the adult autistic, the home physician used to comment that doctors want quick money from easy to care patients, they don’t want to waste time and resources on the autistic, and he was right, of course, because the mentality out there is that autism was and still is a "psychiatric" disorder even if is defined as "neurological" consequent treated as "psychiatric". "There is no difference in treatment" a doctor told me looking directly into my eyes.
No wonder "autism" in their medical texts books is barely mentioned, seeing as a "mysterious" condition many saw the opportunity to make money off autism and off "desperate parents".
"Paradoxical Response" to drugs existed in medical books. Why the group home didn’t want to accept this fact on Danny? Its own physician wrote 3 times "paradoxical response" in his reports. We wonder why no doctor could say "do not give these drugs to Danny, he has a paradoxical response".
Danny’s very first experience with drugs was in a plane trip from Atlanta back to Toronto. He was a bit restless and so the hostess offered Dramamine, I remember observing him closely, he quieted down for a minute, even closed his eyes for a few seconds and then went on to become even more restless, louder vocal noises and kicking the seat in front of him upsetting the passenger sitting there. If we have known about the term "paradoxical response" in relation to drugs that sedate or stimulate and known their meaning, we would have understood and prevent further use of these type of drugs on Danny, but we didn’t know and we were left confused, wondering....and I believe that’s the state that some doctors wants us to be so they can take advantage of confused parents so we fell easily into their web of lies and deception.

********************
Now, if in 1980s the use of the computer and Internet was widely spread like is now, it could be a bit tricky but still desperate people falls to their deceptive manners, now more than ever with drug manufacturers marketing advertising drugs to treat many disorders/diseases, made up or real. If one listen carefully to the adverse effects that are said at warp speed you wonder if they are worth it, the adverse effects are worse than the "disease" supposed to cure. In 1999 when I learned how to use the computer and research online I was cautioned by administration about to be careful going online that a lot of trash and misinformation were written there, like I was a child unable to distinguish trash for veritable scientific studies and the irony was their own physician was inviting us, parents, to visit his website and shortly after the group home launched their own.
Internet was an amazing source of information. As we got educated, our anger grew, we felt taken by these so called "experts" allowing our innocent child to be a victim of their irresponsible, disturbing, cruel, criminal "behaviour" uncaring ignorant greedy approach to autism on Danny. Their words in their defense is "mainline medicine" and "professional standards of care"
We were left shaken at seeing their naked bodies, seeing their soulless angry spirits.....we wonder how they can sleep at night, how they can live with themselves, how they can go to church to take the Host or confess.....I remember listening the priests preaching from their pulpit, reading Jesus’s words about what happened to those that hurt children...
On reflection, I must have used words like "to calm him down" in describing Danny’s "behaviours" as I was ignorant of its psychiatric connotations. Later, I remember the efforts of psychologists/behaviour therapists, staff, trying to put words in my mouth saying, " Danny needed to calm down" meaning he was "agitated" instead of our words "to slow him down" referring to his tendency to run to release excess energy from his hyperactivity.
All our efforts were to seek their understanding, not realizing that the group home administration and staff were doing all sort of dances around us to sound like they agree with us by repeating our words because agreeing with us on the negative effects of the drugs on Danny was tantamount to admit culpability and that was not allowed.

 

Informed Consent

Adverse Effects of drugs, "All drugs have side effects" but we never expected them to be so damaging. We were so stupid not to ask. The problem was that in our minds was that these drugs were presented as "medications" and were given by doctors, and doctors supposed to help you heal... feel better. Even if we ask what to expect the doctor would have made it sound as something of not importance and remote to happen, said, I believe, absolutely intentionally, so we parents consent. Danny was a child, just 11 years old, what were these people thinking? Angrily, we asked ourselves.What do they care about? Prescribing these neurotoxic drugs to a child. We felt betrayed.
We were expecting words of wisdom product of their highly educated background, of their higher intelligence and many years experience. We thought of them kind and understanding and, falsely, they looked the part. We were expecting to light the way to lift our burden instead they brought misery to an already anguished family. They brought pain and suffering to an innocent child, a trusting child, a defenseless, non-verbal autistic child, and they did intentionally with full knowledge of what they were intended to do, prescribing drugs that would bring chaos and confusion to us and to him, reducing his potential to nothing.

Adverse effects were never mentioned to us. We heard someone saying they did, they lied. Much later we read the words, hard to pronounce, even if the doctor would have said those words we wouldn’t have understood them. So the doctor slept through our first appointment to wake up to write the prescription for Thorazine. Years later we read the words describing the adverse effects, we needed a medical dictionary to see their meaning of each and from there to search online for simpler explanations. If they were mentioned and spelled them out to us we have never consented. If they had explained what was the real purpose of their use we have never consented.
That’s what was lacking: "informed consent" and we were not duly informed of their intentions and consequences of using these psychiatric drugs on a bright non-verbal autistic child. Years later the deception continued, when we saw the damage and we opposed to the use of drugs, threats and false allegations were made to get us to consent.
So the government has formed a committee to educate front-line workers to identify drugs’s adverse effects on state-care children. I noticed doctors are not able to identify correctly the damaging effects, not able to separate "conditions’s behaviours" from drug-induced behaviours. If doctors don’t see them less would be able to see an average caregiver. I have noticed that. And then I have seen the indifference, the non-response. Some of Danny’s caring caregivers sounded the alarm to no reaction neither from us, nor from the doctor or from the group home administration. So, with committee or not, I don’t believe that situation is going to improve unless parents get educated or better, the government creates a drug-free environment for children and non-verbal autistic

July 6, 2007

 

Another date hunting my memory is Friday December 13,2002. A couple of days before something extraordinary I experienced in that evening of Wednesday, December 11, 2002, Danny and I had been out for many hours seeing the Christmas lights in Keswick and Stouffville, we had a pleasant time and Danny was happy, smiling and humming at the back, but it was late and it was time to take him back to the group home. I went in, saw that the staff member that Danny feared was still there so I decided to drive around a little longer. Suddenly I was overcome by a sense of deep fear, I felt cold in my arms and legs like my blood was drained, my skin in my face felt hot and prickly, a sense of impending doom overwhelmed me, I have never felt this way before. I decided to drive straight to the head office no really knowing what was about to say. Members of administration were still there, leaving Danny in the car, I talked to one of them and the other one followed me to the car. I told them that I feared for Danny that I had a kind of anxiety, panic attack, that it didn’t make sense, that I couldn’t calm myself. I felt embarrassed at the same time and wanted to go away. The man offered to go to the group home to see that everything was ok. I didn’t think it would help and we left.
I drove an hour longer, finally I had to take him back to the group home, dread or not dread.
I had dismissed that aggressive staff as his liaison not once but twice, he was the one who said, "I work for ...I don’t have to be friends with your son". Next day Thursday at the end of a "protocol" meeting, he accused my son of "sexual misconduct". On that Friday evening staff had a Christmas party and he with another autistic man left for another place I saw him leaving smiling as usual. Later that night, I received a call that Danny couldn’t settle down to sleep, he couldn’t stop banging his head and staff called that particular staff who happened to be "on duty" who told him to sit by his bedroom door and stop him everytime.

Next morning Saturday I phoned to know how was Danny, a staff answered and suddenly hang up the phone telling she couldn’t talk "any more". I got there and the house was quiet, nobody around. Danny was sitting as usual in the black chair, eyes down, head down, no smiling even when I approach him, I noticed that he was wearing a white turtle neck shirt with long sleeves, very unusual, then a staff came in and without saying much helped me to get him to my car. Danny was quiet not himself, clearly he was in distress, usually it would take me half an hour to get him smiling, but this time he was no there. It left me with a foreboding feeling.....

  

The days went by with nobody saying anything. Then next Friday December 20, 2002, I saw the large bruises, they were extensive on her left arm and left leg, some were on his chest. Staff couldn’t say they hadn’t noticed them, they supervised his self care, his dressing and undressing. All these days staff members had the chance to say something, they choose not to. Later I found out that only one staff wrote an incident report with no reaction from administration. Distraught, immediately, I emailed the Ministry. That got the administration moving who did, as usual, an "internal investigation" and it was done in January. Months later I got to read the report, in it says that nobody knew anything and probably it happened while restraining him from head banging.

The irony of that statement is that he has been banging his head since 1991, solely in the group home until given Risperdal, and he was restrained in very forceful way, the wrong way according to the new administration, even getting his collar bone fractured, but he had never had such extensive deep bruising on his body. The staff members who went with him in that day were not new employees, they had been trained extensively on CPI, Crisis Prevention Intervention. There were no excuses. Clearly it was done maliciously. As some staff was saying "they (administration) wanted to break his (Danny’s) spirit). This time they did it, Danny was crushed, his smile was never the same. I remember one staff saying "I wish I could wipe his smile". Well, you got your wish!

So, I was asked why I didn’t bring him home for good. We wanted to since 1999, but there were some threats that made me think, but worse of all was his father’s illness. On March 2002, a month after his father’s death, we tried again, we asked that aggressive staff member who was Danny’s liaison, how he was doing and as usual we got the arid "fine". We brought him home. That night at home he banged his head on and off all night, at 3 am we called 911, he settled down, but then the rest of the night he drank water non stop, finally falling asleep at 7 am. His siblings kept up until 4 am were very tired but still they went to work. Also we were sprucing the house for selling and without his father we were not great at repairing holes on the walls.

Moreover that staff acting as his liaison used that episode to say to doctors that "the lack of support at home" was behind his head banging at home.That Danny was not head banging at the group home. We were astounded. Other staff members denied that statement, in truth it had increased, were saying.

Another date came on May 2002, Danny had another episode of non-stop head banging and his Zyprexa is increased to 7.50 mg from 5.00 mg which in turn increased the severity and frequency of his head banging

Visiting the group home one Sunday with a friend we saw him banging his head against a tile wall with such strength and persistence that they had to keep a staff member at all the times on front of the wall, later they remove the wall. Again caring staff members spoke to me letting me know that the presence of that aggressive staff was setting Danny off to bang his head.

I had to see with my eyes what they were talking about and after witnessing his rough treatment of my son I immediately reported to administration asking them to remove that man as my son’s liaison not once but twice and then came the day of retribution December 13, 2002, the day he was beaten, the day he lost his innocence, his trust in other people, lost his smile and, finally, his spirit was crushed. Two days before I had that extraordinary feeling of foreboding premonition.

The year 2003 was Beth’s year, a caring staff who stood for Danny and became his liaison. Other caring staff members had hunkered down, saying that "if they complain about the brutal treatment that the autistics were getting they would be fired and more of "its kind" would be hired", "at least on those days that they were with them they were comforted".

April 07, 2007

"Dignity. What did it really mean? Was it self-respect, worthiness, and feeling important about yourself
or your accomplishments? And yet, dignity, or loss of it, seemed to make one feel as though the public
or private degradation was somehow deserved. When one person tried to injury another’s dignity,
because of jealousy or anger, he wondered how such a thing could make a person feel good about
being so offensive? "

A quote from "Walk of Fire" a book written by Pamela Hammersly

Our son Danny’s dignity and self worth were stolen from him, his human rights violated, treated worse
than an animal, treated like he was not able to understand what was being said or not able to feel emotional or physical pain, or not able to feel fear, like he was a non-human,and thus, didn’t deserve compassion or to feel happiness. He was abused physically, verbally, emotionally,chemically, unable to speak his mind or to defend himself, feeling cornered and threatened, he started to lash out in self defense. A mistake done by a member of the group home administration brought him back home, deeply traumatized and on the road to recovery if ever that’s possible.

Danny suffered ignominious treatment at the group home since he received Risperdal and the last years were the worse.We regretted for our lifetime the pain we caused him by our decisions. Writing is therapeutic for me and I hope by writing about his painful experience someone would learn something and change how the world looks and treats the adult autistic.
There are specific dates that keeps haunting my memory so I will write about them.
One is Monday, February 11, 2002, an angry caregiver said to me "What were you expecting? ". Indeed, what was I expecting? Caring caregivers had "rescued" Danny from the psychiatric ward where I had taken him when he couldn’t stop banging his head that weekend at home. They were arguing with nurses and doctors, one was expelled and left exasperated.the others continued to negotiate Danny’s freedom.
In that month of February we were happy for Danny, he was already three months off Risperdal for the second time and caring caregivers were pleased with his behaviour but concerned about mysterious bruises. A couple of weeks prior they’d called me to take pictures of bruises on Danny’s body and face, then a week before I was called again this time he had only a black eye, so I took a picture and I thought by Friday he would be alright. In that week I was reminded that I shouldn’t phoned during the week and to wait for the liaison to call me. So Thursday evening, as agreed, his liaison called me to let me know that Danny was doing "fine". Next day when I went to pick him up for his weekend at home I was shocked seeing his face covered in bruises.Both eyes were black and blue and one was swollen shut and bloody. I looked at his liaison who muttered, "he must have done it at night" quickly, another staff corrected him, "Why are you saying that! He has been doing it all week! ". For a moment I thought to call administration for an explanation, but then thinking again coming home he would relax and recover. Once home his brother stayed with him and I went to see their father in the hospital, didn’t get there he phoned me to come back home Danny was banging hard his head non-stop on the coffee table,with those severe injuries we couldn’t let him continue doing it.
At the last parents meeting the new manager had announced that from then on both homes would be closed same weekends, his announcement was received with some mild objections. In the past if I needed advice or help with Danny’s head banging I knew I could call the other house to talk to staff there. This time for support administration gave me a list of phone numbers of places whose people were no familiar with Danny, I objected to it as useless, still I phoned each place and even I phoned some of his caregivers, nobody answered,obviously.
We had opposed the use of Risperdal on Danny not only because it almost killed him (another sad date: June 5,1999) but because it changed Danny, from a fun autistic child, artistic talented and fond of playing video games into a scary monster I came to fear. Danny suffered while he was on and worse when off Risperdal, it caused painful back, neck, head spasms; frozen postures doing slow movements for hours and if interrupted he would aggress and/or bang his head hard. The group home physician who was also Danny’s family doctor wrote on his reports what he thought might have gone wrong and the reasons. For all of us and those caregivers who knew him from before it was apparent that Risperdal was behind his deterioration but not for administration despite knowing Danny for 9 years.

                                      XXXXX

We were always wondering what brought up this episode of self-injurious behaviour if that was the case. There were insinuations that it wasn’t really self-injurious behaviour or SIB. At that time for me to think that another human being /staff member could hurt Danny on purpose was hard to take. Still the idea of Danny punching his face and eyes to this extreme was disconcerting and distressing. More distressing is that he was doing it all week and not letting us know about it? Administration had no interest in finding out, like that was expected after all Danny wasn’t on any med, to them Danny needed to take Risperdal. They didn’t care to remember that before Risperdal banging his head at the group home was occasional and at home happened only twice. I remember Danny doing it like a wood pecker with an interval of six months in between and that was after almost a couple of years of living at the group home. After being on Risperdal his head banging became chronic almost doing it everyday, sometimes several times a day and even doing it at home. Kept off Risperdal he started to recover,staff members were pleasantly happy to see Danny back to his "normal" self so we were surprised and very upset when the group home administration coerced us to consent to give Risperdal for a second time, he immediately started to bang his head. Unless his SIB was related to mistreatment by a particular staff as other staff insinuated.
So,what other factors were there? A few weeks later talking to parents one mentioned in passing that more than a dozen of PRN drugs went missing in August 2001, confirmed by administration. Then another parent found her meds stolen from her purse. Could be the disappearance of these drugs the explanation for this episode? Their doctor wrote that Danny has a "paradoxical response" to drugs. And, that’s a scientific fact known for decades, that some people react to drugs violently with aggressive behaviour and/or self-harm behaviour. Was administration aware of that fact? They had to, the doctor sent his reports to them too. But another fact was that they could care less to read them, when asked they gave me many excuses why they haven’t done it. On learning of such disappearance I told administration that Danny was not safe with PRNs drugs floating around the group home, kept inside pockets of some irresponsible staff members as administration explained to me that they were allowed to carry drugs "for their own protection".

XXXXX

The new administration said to me "forget the past" all well for him but not for us. The present was painful reminding of such "past" seeing our trusting child hurting. How can we, as parents, forget decisions we made that almost kill our child? I remember when the group home physician sold Risperdal to us in 1996 as a "wonder drug" that "it will increase Danny’s mental focus, increase his cognitive skills and would need less meds". When I read in the pharmacy book that it was an antipsychotic I confronted him with it reminding him of Danny’s bad experience with previous neuroleptics. At first he said that Risperdal didn’t have any side effects, then he corrected himself saying, "all drugs had side effects but Risperdal had the least". We believed him. On April 1997 he prescribed Risperdal to Danny. It looked like it was working but still he was in large amounts of Tegretol, Valproic acid and Propranolol (found out later on Ativan as PRN). So we reminded him to get him off all those drugs as promised. We wanted to see the "wonder drug" in action. The first sign of trouble came in October 1997 his liaison wrote that Danny wet his bed. By March 1998 he was urinating every 45 minutes.We had a young visitor from overseas and it was the most embarrassing memory for all of us. We made an appointment with the doctor who dismissed it as a minor side effect of Risperdal that probably "it has blocked an extra serotonin receptor but the most important thing was that his "rage behaviour was under control". We were befuddled, he couldn’t be talking about Danny, then it dawned on us those head bangs episodes that staff were talking about and happening only at the group home were perhaps the "rage behaviour" he referred to. The reduction of the other drugs went on followed by serious behavioural changes written in a note to the doctor and to us by his caring liaison. For the moment staff adapted at his incontinence by allowing Danny to urinate anywhere, making light of it laughing embarrassed. Danny was not laughing, he was confused, troubled and embarrassed at this out of his control new situation.
His liaison was getting even more concerned, the side effects were getting worse. That summer of 1998 he talked to us, wanted to adopt Danny, something that his father remembered in his last day, saying, "I should had let that young guy adopt Danny". Danny was home for summer and we noticed the behavioural changes too, at some moments Danny was restless, moving aimlessly, he was walking over the furniture, running in circles, unable to sit or focus on anything, no doing art work, no playing video games, his face was confused, clearly not comfortable in his skin. If he played video games, he’d get "stuck" like in a trance.Shaking his seat when he needed to urinate but unable to move, we were feeding him every hour and 1/2 or he would have a "episode" of nervousness and hyperactivity.
Early fall I caught up with the doctor in the way out of the group home after leaving his son at the group home and expressed our concerns to him, he told me to ask staff to increase/reduce as he had taught them and to follow his own son’s plan. Administration objected to that saying that was not possible to follow that they knew when his son destroyed things was the time to give him a Risperdal and he would calm in half an hour, in Danny’s case there were no warnings by the time he banged his head it was too late to administer Risperdal. Meaning for them it was better to keep Danny on a constant dose of Risperdal....despite the severity of the side effects? So something else was at play here that pique my curiosity, what was going on? Do we have a conflict of views here? I wanted more information so a couple of weeks later I mentioned this conversation to this member of administration who abruptly said, "I don’t recall saying that" I was taken aback.
In October the doctor ordered a reduction of Risperdal but when Danny reacting with severe non-stop head banging staff raised the amount fast. By Christmas 1998, Danny is home lying on the couch cover with a comforter, a very strange behaviour, usually he is busy doing art work or playing video games when suddenly I look at his face, he was perspiring heavily doing some strange movements under the comforter I lifted it and I saw him stiff, all twisted like a "pretzel". No, it’s not possible to forget the past, besides they asked me to do it but like good hypocrites they don’t......

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January 1999, this time Danny had to be off Risperdal. Staff took pictures of his "pretzel " postures,showed them as evidence to administration and finally the doctor ordered the withdrawal. The symptoms of withdrawal were disturbing and scary. We were left angry, distraught, with many questions. His father was left wondering why it took so long to get Danny off that drug, why the doctor didn’t responded faster to Danny’s liaison’s concerns. It was apparent for many that Risperdal was behind the deterioration of his condition but not for administration.To us it was an emergency for them "protocolos" came first. We presented our concerns to administration many times, what we got was a brick wall. We were frustrated at every step more so when we were blocked from presenting Danny’s case to the board of Directors, then came the threats of letting Danny go. In desperation we wrote to the investigative team from the Ministry of Social Services.
We were trying to understand the group home administration attitude, we started to examine every possible factor.We knew the organization was always looking for ways to raise money and parents were asked to pitch in. Parents presented many ideas. One year the doctor presented a "method" of diagnosis and treatment of mental illnesses in the autistic. It would bring financial benefit for the organization and also would save money for the government. It was opposed by a parent because left the organization open for lawsuits as it was coming from a general practitioner.A copy of a letter describing this arrangement was sent home to us in Danny’s home book which I filed under "Doctor’s reports" without reading it. If this was a case of a financial investment to protect, clearly administration overreacted in fear that their investment would collapse. At the end, what that had to do with us? If the doctor’s "method" failed on Danny, he was just one, they shouldn’t got up in arms, there were many parents that approved the doctor’s diagnosis and treatment and according to them their children benefit from it. I talked to parents who confirmed it, why they were so afraid/angry if one lonely one patient didn’t benefit? Apparently Danny was not the only one, thus the investigation.
Something else happened the administration attitude towards the parents changed, now they were a bit disrespectful, a bit sarcastic, condescending and even intimidating. In 2001,a new administration didn’t help matters came, still we were hopeful of improvements.Their negative attitude changed further,at parents meetings they played silly games while being asked how the money was spent. Eventually, parents meetings were ended. PCP’s were implemented dissolving the parents’s power base.
Even though legal aid said that Danny didn’t have any rights because he couldn’t speak , people in the know was explained to us they had all the reasons to be afraid, we could have sued them for breach of trust, breach of fiduciary duty, impinging on Danny’s rights and we could go on and so they decided to go into the offensive which surprised us and made us curious to find out why. They shouldn’t have worried we just wanted Danny as he was before Risperdal.

 
Then another possible factor. Recently, through Internet I read the interactions of Risperdal’s manufacturers with state agencies caring for the disabled, if that’s a fact it could explain the organization sudden change from rags to riches. A very interesting and compelling evidence way too coincidental in its timing of a drug manufacturer intervention. But it’s not up to us to discuss these possible evidence, it is up to people in power like our government to investigate and improve the care of the most vulnerable among us. It is up to them to change the perception of the adult autistic, to avoid unnecessary drugs in the "treatment" of the "autistic behaviours" that make some of them crazy violent. To provide choices of treatment, choices of environments. If a parent wants their child supported at home, that should be an option, if a parent wants a drug-free environment for their autistic child that also should be an option.
Now, if the parents believe their child benefits from psychiatric treatment, the government has the responsibility to monitor the amount of drugs given and the dosages. If they want psychiatrists, psychologists and behaviour therapists standing by and staff trained in detecting adverse effects that should be an option. I believed psychiatric treatment that mess up the brain of the autistic should be banned as sterilization of the mentally retarded was banned, but if the parents are willing, it should be an option in condition of full disclosure of the adverse effects. The right for choices faded when the Minister of Community and Social Services at the time, Hon.Sandra Pupatello, announced investing millions of taxpayers dollars in a network of psychiatrists with the purpose to seek and find mental illness among the developmental delayed. I don’t know if the new Minister Hon. Madeleine Meilleur changes anything.
Moreover I believe taxpayers money should be invested in monitoring the quality of life of those adult autistic living in residential care. Cameras is a must. Supervisors and tractables places to go another must. Money should be invested in providing a stable environment with consistently stable, cool, calm, collected support workers. The autistic should be matched with a compatible support worker. Staff members should interact with them in a positive supportive way not as their guardians. Another important aspect of their care is instead of spending money in expensive drugs, should be spent in good food/diet. Staff members should be in good physical condition to provide the autistic with proper exercise, staff members should provide the chance to create or share activities in a consistent manner. The government should stop medical discrimination so blatant at the moment. The autistic should be provided with means and skills to comunicate. They need adequate compassionate support trained in communication skills. The adult autistic deserves to be treated humanely. Interacting with well trained workers who won’t waste time looking at their behaviours as psychiatric.
Finally, the adult autistic can continue learning, continuos education/training should be provided. Individual funding should be in their names so that they or their families can select the best environment or select the most compatible worker willing to commit as much time working one to one, select those willing to spend time to get to know their particular way to communicate. The autistic needs a support worker so they can rely on for support and act as role models. The support worker for the autistic should receive a full time salary and benefits. It would be far cheaper than paying for administration, psychiatrists, psychologists and behaviour therapists who do not work directly with autistic. That’s it if the government wants to see improvements. At the end the only thing that my son Danny wanted to do was art work and to have a friend to spend time with him, to share his interests with. A quiet house, a comfy warm bed, good food, clean washroom... simple comforts.

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On March 1999, we had a visitor, an older cousin from overseas. He was sitting on our living room couch besides Danny trying to engage him in conversation while we were cooking in the kitchen, he came to tell us, smiling, that Danny perhaps didn’t like him very much because he had stuck his tongue at him for very long time. We told him that was drug related. He became sad. On seeing Danny shaking and having spasms while sitting besides him, he casually commented that Danny looked like a drug addicted going through a drug withdrawal, Danny’s father agreed, both men who have traveled extensively and had seen everything knew what they were talking about. At the same time we were watching David Suzuki’s show "The Nature of Things" on the medicinal use of marijuana for seizures and Tourette’s tics, it showed a child with seizures calming down after drinking milk and marijuana I thought that herb could help Danny with his spasms if they were seizures or tics. My understanding of the effects of Risperdal in the brain and nervous system were minimal. His cousin also told us how another younger cousin diagnosed with bone cancer had been able to withstand chemotherapy with the help of homeopathic remedies. That was the first time we heard of that word Homeopathy. It was big in Europe. About marijuana we read in the papers that Allan Rock, Minister of Health at the time, was conducting a research on the medicinal uses of marijuana. So we thought perhaps this herb could help Danny. I went to the group home physician and asked him to write to him on our behalf. His assistant phoned to let us know that they couldn’t do that marijuana was still illegal in this country. Shortly after administration phoned to let me know that they would "support us on anything as long as it was legal" . The physician further declined to assist us on reversing the effects of Risperdal by saying that he was not familiar with the use of supplements, vitamins and with homeopathy and naturopathy medicines, we then finished with his services. Even though we didn’t get the doctor’s support, administration supported us and we went looking for a naturopathic doctor. They were expensive, so I asked administration to help us financially with Danny’s money, he told me that there was not much money left on his bank account, we were surprised his caregiver has told us differently. For years we ask them to show us his bank statements of that year, we never got them.

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April of 1999 Danny was finally off Risperdal. Staff asked me if they could give it to Danny as PRN "once in a while to help him through the withdrawal" I say ok, I assumed that it meant a little bit here and there. While in the meantime I was trying to find a Naturopathic doctor, finally one phoned me back acknowledging that Danny’s situation was very complicated and he direct us to the Naturopathic Clinic where a 4th year intern would examine him with the assistance of experienced supervisors. Immediately, I phoned the clinic and made an appointment for the end of June and let administration know. Suddenly administration made an about face, they wanted us to go to another appointment with their doctor. We objected, we didn’t want to we had already made up our minds to try alternative medicine and he couldn’t help us there that we’d asked him, still we were told to go and to "just listen to him" that was a couple of days before the appointment with the clinic. So we went, Danny was not there, as might as well the appointment lasted 3 hours and at the end the doctor just had another antipsychotic for him. We were astonished! How many more? He had been on three typical antipsychotics: Thorazine, Stelazine and Mellaril, with serious side effects, the last one was the "wonder drug" Risperdal, an atypical antipsychotic, that almost killed him on June 5, 1999 and he wanted to prescribe another one: Zyprexa. We would be very irresponsible parents if we allowed it. At that appointment he also explained that the June 5 episode of abnormal movements apparently was the result of MSG or Chinese Food Syndrome and under his breath said that Benadryl would had stopped it. We left wondering how many things we were not told. It didn’t matter if two weeks later we went to the same restaurant, ate the same food and there was no reaction, we have never being concerned about MSG on Chinese food. After that episode we found out that Danny had been receiving "3 or 4 times a day Risperdal 0.25 mg, 3 or 4 a week" we asked his liaison to stop it "just in case".
Danny didn’t come for that appointment but he did for the Naturopath clinic, we were all there family and administration. Danny came with his liaison, shaking, having non-stop spasms, throwing his head violently backwards like having electrical shocks, the hand of his liaison holding his head to prevent him from hitting the wall. His face pained and confused. The treatment begun in August. We were told that they would follow "a treatment for schizophrenia not because he was but because Risperdal made him act as one". This treatment had many unknowns to me and I was very scared. To our surprise not even three weeks of treatment went by when the phone calls returned, the same member of administration would call us with a tired robotic voice telling us that "the treatment wasn’t working" we had just an answer "give it time".
All that year administration gave us a lot of attention, many phone calls in which we were told many things from being "ungrateful to a devoted doctor". We have finished with other doctor’s services and nobody had called us ungrateful or insisted to get back to them. They made insinuations that we wanted to ruin reputations and when I repeated again for the 10 th time that our intentions were just to reverse the effects of Risperdal and get Danny back as he was before, I got a sarcastic laugh. I could see that Danny was of not importance to them, whoever "them" they were because we couldn’t understand the transformation and we wonder for whom they were really working, we were confused by this new agressive, hostile attitude towards us.
Nine years had passed by, we thought they knew us well, we thought they knew Danny well and we thought we knew them. This man wanted Danny in larger amount of Risperdal, he said that staff thought that "there was something wrong with Danny’s head". Was he become blind and deaf? Apparently his memory was also affected. Where were he when Danny was having problems? Did he listen to staff describing the adverse effects? Did he read their own doctor’s reports? Were he listening to staff concerns, did he listen to our concerns? Danny’s father was besides himself, this man to whom he had entrusted Danny in April 1990 was a totally different person. He felt betrayed and felt angry. I even spoke to the executive director twice and it was of no help. Exasperated we told him that we wanted to present Danny’s case to the board, he blocked with a letter. For us it was an emergency for him we haven’t exhausted all "avenues". Then we received the first threat from him that they would "let go of Danny". We cooled down, something was going on the organization that needed to resort to threats to quiet us down. We needed to find out. At that time the Ministry of Social Services was doing an investigation and parents were asked to present their concerns we wrote a letter asking for "the freedom to choose an alternative treatment without prejudice". His father had a heart attack and the phone calls stopped for a while.

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I quit my part time job to investigate what went wrong with the group home doctor’s treatment. How is it that Danny on "meds" didn’t get better but worse. So I read all his papers with a medical dictionary. Reading his papers I found a reference to a diagnosis that he made in 1997, not finding it anywhere I asked administration for it who handed it over to me saying, "I thought you had it all this time". What we read on it made us even angrier. The doctor had diagnosed Danny with several psychiatric disorders. He had deceived us, he has lied to us. He has sold us Risperdal as a "wonder drug" that "would increased his mental focus, his cognitive skills, would need less meds and it had the least side effects". All lies. Throughout all the appointments he NEVER mentioned not once that according to data collected he had found Danny suffering from psychosis and in need of Risperdal. We let know administration of our disappointment, how angry we were, that we wanted those diagnoses erased. At one point, while we were at the annual Christmas party, the doctor raised his voice to say "parents don’t like to hear that their children are psychotic". Another time someone insinuated that we should have known about his theory of psychosis in the autistic. We could never associated psychosis with autism, they can’t speak how they can be diagnosed with psychosis? I went to the University of Toronto Psychiatric department, I went to their library I spoke to young students who direct me to seek answers in the Internet. I started to talk to parents, started to go to the group home to get to know more closely the staff members. To see what kind of quality of care Danny was receiving. The experience was an eye opener.

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The withdrawal symptoms were very scary. He was doing bizarre slow movements like in a trance, one specially terrified us he would twirl his shirt around his neck, we thought he would strangle himself . Another one was while eating to stick the knife or the fork deep inside his throat until gagging. I remember holding my breath trying not to react, my instinct was always to ignore and not to scream "No" or "Don’t" because it could make it worse. So, my tactic was to ignore, redirect, distract, divert, many times worked but hardly for the severe drug-induced frozen postures, stuck doing same action in slow motion for hours, head banging and head butting I would later see. The doctor told us that Cogentin would help him with those slow abnormal movements, but it didn’t, instead increase their speed. So, when staff members asked me if he could have Risperdal as PRN "once in a while to help him through the withdrawal effects" I said ok assuming it would be just that, but they didn’t, it was used far more often prolongating the withdrawal.
On June 5, 1999, we took Danny for a car ride and take out Chinese food to celebrate his birthday, it was his favorite meal and had it regularly all his life without any ill effects. When we were home at around 4:30 pm suddenly Danny started to move repetitively, picking up speed, doing over and over the same movements, crying, perspiring, wetting his pants, holding his chest would say "itchy" , his heart was beating fast on his neck, we thought he was about to have a heart attack. Most upsetting was to see him looking at us standing there not knowing what to do begging us to stop it, whatever it was, we just stand there helpless looking back at him no understanding what was happening. He didn’t want to eat, drink, anything he was going on like possessed. Finally fell asleep at around 1 am, we thought it was all over. Next morning at 8 am I woke him up for his meds and his right arm came out from under the covers moving like a snake and the movements started all over again to finally fading around the same time 4:30 pm. Investigating I was told that he had Risperdal 0.25 mg 3 or 4 times a day 3 or 4 times a week. I asked to immediately stop it just in case. The physician thought it was a reaction to MSG and, under his breath said that Benadryl would have stopped it. Later, we were glad that we didn’t know about Benadryl to give to him in that moment. This over the counter drug has a similar action as Cogentin. If Cogentin had accelerated his slow movements Benadryl would have done the same and Danny for sure would have had a heart attack from an increase of speed in movements.

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From June on we were reassured me that he was totally off Risperdal, however the drug-induced parkinsonism persisted (a.k.a late-onset extra pyramidal side effects). His "frozen" postures worsen. Doctors use many different wording, that adverse effect is also called "Tardive dyskinesia". But the doctor didn’t see it on Danny. Still Danny got "stuck" doing same slow movements and if interrupted he could, unexpectedly, with extraordinary super human strength, head butt and then he would bang his head screaming loudly. As he did to me on Christmas day 1999, from then on I was scared of Danny.
What made very angry because I was never scared of my son, his siblings were never scared of him. Feeling scared of my own son not only made me very angry but strong in my resolution to investigate to find out, why drugs didn’t help Danny but made him worse. Why the organization felt the need to threaten us. Were they afraid of us? In the meantime, whenever Danny came home for the weekends I needed his father to stay home and whenever Danny would get "frozen" I would call him to prevent Danny from banging his head or head butt me.
Risperdal changed Danny’s personality from a fun autistic child, from being a talented artist proud of his work, playing video games with his siblings to some scary monster we could not relate to. I used to take care of him alone, Risperdal made it impossible for me to care for him. It also made it very expensive for the group home to care for him. They had to adapt, renovate the washroom "especially for him" I was told. The experimentation with the drug Risperdal was expensive for us too. He got stuck to the shower taps turning it on and off with superhuman strength for hours until the tap would break. He would flush the toilet 40 times or longer until the handle broke. He developed disgusting bizarre behaviours like drinking water from the toilet bowl. Or, drinking from the tap water for hours. Nothing of that was observed by us at home before Risperdal, did he do all that before at the group home? Staff members who knew Danny said no. Just one said that the first time he saw Danny he was banging his head against the toilet and was asking why he wasn’t on meds. We learned later that drugs caused this bizarre behaviours and they do not need to be just the antipsychotics drugs, could be Benzodiazepines, anticonvulsants, blood pressure drugs, SSRIs like Prozac, and Danny was given everything and anything, it might be that he saw a reaction to Ativan or to Largactil.

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Our mistakes affected Danny’s quality of life, to his last day his father remember them and deeply regretted making them, if he had known better he would have done everything differently. The problem was that these people didn’t show us all the cards, they didn’t tell us their real intentions, they didn’t tell us the real intentions in prescribing those drugs, they didn’t tell us the drugs’s adverse effects, they deceived/ lie to us, drugs’s adverse effects were covered with diagnosis of psychiatric disorders that Danny that didn’t have. So, virtually, we were kept in the dark and Danny suffered as consequence. Because of his suffering,I need to write in full detail what was done to him and to seek justice. His treatment cannot be forgotten because is in the past. If we occluded the past we prevent others from learning, speaking up we prevent them from repeating the same mistake, hiding the past prevent them from improving the present and the future.
Personally I made many mistakes, one I most regret was that on Friday, February 8, 2002. I decided to take him to the emergency room after he couldn’t stop banging his head. Since early on the year 2001, administration wanted Danny committed to a psychiatry ward. And I have done for them, Danny was in a psychiatric ward lying in bed, kept restrained to a bed, given large amounts of Haldol, Benzodiazepines, and Zyprexa, who knows where he could have ended up if it weren’t for the intervention of caring staff members who came to his rescue. As I said since 2001, administration wanted Danny committed into a psychiatric ward, we didn’t know that it was sought of and expected by administration. I find out much later that the home administration has made arrangement with the hospital’s psychiatric department to commit Danny. Their own physician wrote that Danny has a "paradoxical response" to drugs. Later I found out that before this "incident" more than a dozen of PRN drugs had vanished.

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Everybody, administration, parents and staff knew our position on drugs and our relationship with administration got worse after they coerced us into consenting (November 2000) to give more Risperdal to Danny with false allegations and threats of sending Danny home. In 2001 came a new administration, Danny’s father, despite having a second heart attack after seeing Danny hitting himself again while again on Risperdal, was hopeful that "this new chap that looked intelligent" would listen to him. He went well prepared to the meeting armed with videotapes and calmly explained the situation, when the new manager ended the meeting saying that "we will have another meeting" he left the meeting livid, so angry he was that I was sure he was about to have another heart attack in the parking lot. He said, "You can have as many meetings with them and repeat yourself ad nauseam, they are not going to listen". But, I went to more meetings and after some pretty nasty, I was told to never going alone.
I wanted Danny off Risperdal, but then the threats changed from sending Danny home (1999-2000) to send him to the Whitby Mental Health Center (2001) where, they say, doctors there could take Danny off Risperdal. I couldn’t understand why the change in threats (I found out on April 2005). Clearly, administration was very angry with us, but we never suspect that in retribution they would to take it out on Danny.

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They knew discussing drugs with me it was a very sensitive topic to me. Yet, this new staff who became Danny’s liaison around October 2001, tried to talk me into approving the use of drugs on Danny with nonsense arguments which upset me and I lost it. Since then he became very hostile with me but I couldn’t believe that he would take it out on Danny, but he did and administration did nothing to prevent it. Later he told us, at the end of one of many protocols meetings, in front of the new manager who was there with me, that he was an ex jail guard with no experience working with the autistic. He was an ex jail guard with an attitude and was assigned to my son as his liaison after his brother- in- law quit. "Brother- in- laws" ? That was another surprise. Is this now a family bussines?
Some family/friends/staff asked us why we didn’t bring Danny home. First Risperdal changed his good nature personality into a scary monster. I was scared of him since he attacked in December 25, 1999. If his father had been in good health and financially secure we would have brought Danny back home.
Back again to that weekend February 8-10, 2002. It was very scary we couldn’t understand why Danny couldn’t stop banging his head. At the ER lying down in a bed he was calm but the ER doctor afraid that Danny would hurt himself again wanted to inject him with Haldol but he needed me to sign a consent form, crying I signed. An hour later the nurses came with a gurney to take him to the psychiatric ward. They were surprised to see him awake, after all he had received a large amount of Haldol and a Benzodiazepine. Danny was looking at me with a questioning look in his eyes so I explained to him and he went walking in front of us checking back on me for directions (which later surprised his liaison who said that Danny needed two or three staff to take him anywhere).
It was late,so I told him to get ready for bed and he did. Next morning we came with his clean street clothes, his meds and some food and to our distress we saw Danny chemically sedated and mechanically restrained to a bed. I asked what happened, the nurse wasn’t sure but apparently when a doctor came at 3 am to examine him he had punched him or that he awoke and wanted to go home or use the washroom and he got all confused, something, she didn’t know or didn’t want to tell us, and that’s why he was kept "sedated but rousable". I reminded the nurse again to give his anticonvulsants, she assure that they were given. Next day he was still sedated and restrained. So all together, since Friday night, all Saturday and all day Sunday, for over 55 hrs !!!
On Monday February 11, 2002, caring caregivers had to fight their way in, fight with nurses and doctors to get him out, they made a big fuzz until they got Danny out, one got expelled and angrily looked at me and said, "What were you expecting? Indeed, looking back, what was I expecting? I knew that the organization wanted Danny committed in a psychiatric ward but I couldn’t believe that they wanted it so badly.

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Tuesday, February 12, 2002, he had a grand mal seizure. Against caring caregivers objections to let Danny sleep the aftermath of the seizure this hostile liaison had taken him to the emergency room, I was told that when I went looking for him at the group home. So I rushed to the ER and that’s where I found him, Danny ashen face, falling off the chair. One female staff had discomfort all over her face, while the liaison angrily ordered Danny to stay sit. According to him, he was following (Danny’s) doctors orders. Danny would have to wait hours to be seen by a doctor. That was deliberated abuse and I confronted administration about it, who with blank faces, gave me no answers. It made me wonder again for whom these people were really working.
So the nurses had lied to me and didn’t give him his anticonvulsants so I went to speak to the ER psychiatrist to find out why he took him off all his anticonvulsants cold turkey, his answer, "something was making sick" and to make Danny whole he had restrained him, gave him large amounts of Haldol, a Benzodiazepine and Zyprexa.
February 14, Danny had an appointment with his psychiatrist, he got him off the extra benzodiazepine, put him back on Valproic acid and kept him on Zyprexa 5 mg/day "let’s see what it does for him" against my objections. Next morning, even though his father was in large amounts of morphine he asked what the doctor had said, after telling him, his comment was, "That’s stupid".
Since early in that week I had asked his caring caregivers to bring Danny to see his father, they promised me for that Thursday but for some reason they were not able to do it, by Friday it was too late his father passed away.
During this trying time the insensitivity shown by administration was appalling, they knew that Danny’s father was dying in the palliative floor of the same hospital. Trying to care for Danny and for his father became an horrible situation for me, his siblings were working full time, but caring caregivers came to my home to give me support saying "we weren’t here". Apparently, they were not allowed to give me any kind of support in their extra hours.
If they had listened to us, I wouldn’t had any problems caring for Danny. On Zyprexa 5 mg/day Danny’s head banging went out of control, yet, I was told by that hostile liaison and, his doctor was told, that Danny was doing "fine". Believing him we brought Danny on the Easter long weekend, it was a disaster, banged his head non-stop making holes on his bedroom walls, we tried to restrain him but we weren’t strong enough, he would stop and then an hour later went off again it was so bad that we called 911. Firefighters and paramedics came but in front of them he calmed down and say "No, please" to go with them to the hospital (Would I ever learn? ) after that he went to the washroom to drink tap water non- stop until dawn.
The situation was not realistic he kept his siblings awake when they needed to get up early to work. Obviously Danny was not "fine". I couldn’t understand why this man kept on lying. I questioned other caregivers what was going on, why he was allowed to lie, then I heard the words "evil and barbaric" and "wanting to break Danny’s spirit" and, something else: "Yes, we could quit but then more of his "kind" would be hired.....and, then who would be left to console your son? ". I talked to parents, yes, there is a serious problem with that man and they went on to vent on me but they didn’t dare to speak to administration for fear of retribution. I understand that, they are old and sick they couldn’t care for their children at home, so their children are at the mercy of the "kindness" of total strangers. At the parents meetings we were told to that we were lucky to have our children in residential care, we were told many other things that silenced parents and caring caregivers. After that we had to leave Danny in the home. We were preparing the house to be sold, we were painting, fixing walls, packing, but looking for a cheap house that’s when I would take Danny out most of the day until late at night. At the beginning I did it on weekends, but caring caregivers told me the problem were on weekdays when that man and his followers run the house.
And, then came December 2002,that’s another long chapter.

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That question "What were you expecting? " stayed in my memory. Indeed, what? We couldn’t get it. The fact is we weren’t shown all the cards, that’s why we couldn’t get it. We could speculate our failure to "get it" is basically related to how modern medicine have been brain washing us to think that doctors have all the answers, that they would show paternalistic compassion towards the most vulnerable and we expect many times the good doctor to pull out his prescription pad and write the name of a magic pill that would take away all our problems. A pill to make us feel good, to be whole, to be cured and to be "normal".
We were not getting that many times doctors and their "pills" do more harm than good. Most of the time doctors have no time to do a full disclosure of the drugs adverse effects. And many feel that some parents wouldn’t understand anyway and some doctors are not even able to identify them correctly. Some doctors confuse "autistic behaviours" with drug-induced bizarre behaviours, some drugs aggravate autistic behaviours, some drugs creates new even more bizarre ones.
Doctors’s intentions are simple, if the patient can’t speak or don’t behave normally, sedate them. Too expensive/hard to keep? Sedate them. We shall not forget the influence of the makers of drugs on their diagnosis and prescriptions and their need for increased profits by selling more of their products.
Obviously "autism" is a medical condition that modern medicine has no understanding of it. According to the latest information "autism" is NOT a psychiatric disorder. I will not discuss what is it and what could be the causes, nobody knows for sure. There are alternative treatments that work for some.....But, even though there is an agreement that "autism" is not psychogenic in nature and, moreover, that every "autistic" is different. Still doctors have a standard treatment and treat "autism" as such. Doctors agree that there is no "cure for autism" just "meds" to treat some "autistic behaviours" like aggressive behaviour. Experts says that if needed to be given drugs they should be last resort, the smallest dose, for the shortest time, under close supervision. The truth is "supervision" or monitoring does not exist, the rest is up to the group home staff members who some are excellent, but most, usually, have poor training (or, no interest, some abuse their position of power over the autistic). It is also up to the group home officials and their physicians. Those doctors working for group homes paid by the government depend on staff reports.
The fact is that having a diagnosis of "autism" condemned them to be medically discriminated against, they are no worth to waste precious resources on them.

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In truth, other resources are wasted, the wrong and very expensive ones. The most expensive is the conventional psychiatric "treatment" which is approved, endorsed, recommended, sought after by the government. Recently, the Ministry of Social Services announced that it had invested millions of taxpayers dollars in creating a network of psychiatrists whose order is to search and find underlying psychiatric disorders among the developmental delayed that the caregivers are nor even aware of and of course to "treat" them. The program is called "Dual-Diagnosis". Imagine the cost of paying for the services of a specialist like psychiatrists, psychologists, behaviour therapists, the cost of fancy new psychiatric drugs, the cost of treating complications from drugs like drug-induced diabetes....the crisis, the visits to the ER from injuries not only of the autistic but of their caregivers...
Compared with the cost of assigning a well educated support worker, well trained in communication skills, a consistently cool, calm, collected, compatible friend to work with each autistic; moreover to provide for each autistic a particular way to communicate....far cheaper, include benefits, job security, still cheap. The cost of running a drug-free group home where none is afraid to work with an adult autistic who is free of drugs, volunteers would be welcome and would stay.... where diet, exercise, activities of their choices are encouraged....every day education is continued...their potentials developed...

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A parallel campaign is to get rid of the stigma of "mental illness". We were told that there is "Nothing to be ashamed of, mental illness affect us all" or "Look I was treated for depression and now I am fine" or " The earlier the diagnosis, the better the outcome from treatment". If all that was not enough to accept that Danny is a danger to himself and to others as the group home physician in 1997 has diagnosed Danny, besides his autism, with multiple mental illnesses, my own description I made of him as aggressive when he was 7 years old should convinced me. The problem is at that time a Geneva Centre worker advised us to do that that "autism" was not enough for the government to release funds for his education and there was a lot of competition.
How do you find mental illnesses in the autistic? By watching their "behaviour". The problem is that the "autistic" has many "behaviours" that can be misinterpreted as psychiatric. The clue is in that word "interpretation" there is two ways to interpret the "autistic behaviour" as "comunication" or as "psychiatric". Usually the "treatment" sought after focus on the negative "behaviours". For instance in Danny’s case the group home focused on Danny’s head banging and "aggressive behaviours". Ignoring our observation that drugs were behind his head bangs. Despite the fact that drugs could caused and/or aggravated aggressive and self-injurious behaviours on some susceptible autistic like Danny. It didn’t matter that the group home physician wrote that Danny has a "paradoxical response" to drugs due, perhaps, to some problems with the P450 izoenzymes in the liver. Despite observations by caring caregivers that Danny was being "primed for violence" that was provoked into banging his head. Despite my observations that he was pushed and pulled but his doctor told that he was doing the pushing and pulling as the abuse continued relentlessly Danny learned to defend himself and started to lash out blindly. There were other factors that could cause "behaviours" it could be that he wasn’t feeling well, once I saw him rubbing his eyes one staff wanted him to stop, I looked closely he had an eye infection....
We understand that staff members had to prevent injury by physically restraining Danny, but at the same time he was not giving anything to keep him busy, something to do to distract him from self-injurious behaviour. At my request they tried, they bought his favorite video games but the amount of drugs had made him lose interest and caused to get "stuck" and the staff wasn’t encouraging him consistently, either didn’t care or didn’t have the time. It was only a TV, not even that, it was video tapes, one day stuff kept running the same violent movie that I saw played in the morning, played in the afternoon and evening, a movie that Danny saw every time he opened his eyes for a little while. Danny couldn’t move at all, one moment I saw Danny about to scratch his head a nervous staff jumped to restrained him with a "No, Danny".

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Apparently staff members complained of boredom so administration created pastimes for them, provide them with palm pilots and computers so they can register every aggressive movement the autistic did. Once I saw three episodes with a difference of a minute in his file. So staff needed entertainment, instead of engaging their autistic charges in activities, taking them for walks, they would watching them as lab rats. Those taking data with their computer were too busy to do chores like cleaning the washrooms, mopping the urine off the bedroom floors, doing laundry of urinated sheets, oh! I forgot the bed were hardly made with sheets or comforters. Doing some good cooking ( some staff were excellent cooks, when there was food in the fridge ), or whatever boring house chores need to be done in the maintenance of a house was done by dedicated staff members. Selected staff members were busy recording the autistic "psychiatric behaviours" to report to their doctors.
For that the "data" collected on their "behaviours" then it is passed on to the behaviour therapist or the psychologists for "analysis" working in their offices far removed from the scene, yet they are responsible for "interpretation". There is not mention of the factor/s that what caused those "behaviours". Data is made into a colorful graph which is presented to the physician/psychiatrist as "evidence" of the autistic aggressiveness. Data collection is so easy to manipulate by omitting factors that contribute to such negative "behaviours". That way is easy to "persuade" a physician to prescribe a drug/s or to increase it/them.
The fact is anybody can say anything of the non-verbal autistic or do anything to them and get away with murder.
It is very easy to make psychiatric cases of the non-verbal autistic. They can’t defend themselves. As I said, there is money for drugs prescribed from drugs manufacturers and money from the government when the "clients" are presented as "hard to serve or as a very complex case" "with comorbids" "dual-diagnosis" .
Another bendable loophole in human rights was to present Danny to his psychiatrist as a danger to himself and to others and the doctor should commit Danny to a psychiatric ward, which the doctor saw no reason to do it. Not even when approached directly by the home psychologist. After seeing Danny "not functioning" on Zyprexa 7.50mg /day he wanted to reduce it but he was told he could lose his license if by reducing Zyprexa Danny hurts staff members.
What irony! When I have seen over drugged "clients" hurting staff. It is a fact that these people know the negative effects of drugs on the autistic. Drugs can make some autistic crazy violent. On drugs some autistic can and have hurt staff, loved ones (usually the mothers),other house mates, and/or themselves. They know how dangerous these drugs are, drugs can kill the autistic or leave them totally disabled and dependent. They know that on drugs the autistic can destroy property, make holes on the walls, etc. They know drugs can exacerbate the negative features of their "autism". They can develop non stop seizures or status epilepticus; can develop psychotic seizures and the list goes on.

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Another catch 22 statement I heard from some doctors that look like is written in stone and repeated ad nauseam is that "despite adverse effects some patients need to be kept on their pills". Which is outdated, cruelly irresponsible and nonsensical.
The arsenal of "meds" recommended for the "behaviours of the autistic" is simple: tranquilizers and/or stimulants. Danny was given drugs that made him feel and act strange, caused severe physical and emotional pain and could not tell about, which is cruel and over all that he was tormented which is criminal. These drugs caused so severe physical pain that if felt by any normal person could be driven to suicide as seeing in some cases in the newspapers. These drugs suppose to work on a "chemical unbalance" in the brain which has no tests to prove it. Drugs, supposedly they work just in the brain, but unfortunately they affect the whole body sometimes in a very disastrous way.
Doctors opposing to "diagnosis" and "treatment" made on base of "behaviours" without a differential diagnosis observe that some drugs make a susceptible person, normal or autistic,to behave aggressive and to develop self-injurious behaviour; cause or aggravate mood swings, cause or aggravate anxiety, cause or aggravate seizures and the lists goes on. The group home administration knew all that, its physician wrote about it, psychiatrists, psychologists knows about it. It is a 101 course "Drugs and Behaviour". But the average parent do not know about it. Some staff members were aware of it, most could care less or were clueless.
And, then we have the rights of staff members to protect themselves from the aggressive autistic. Administration confirmed this fact: staff members "have the right to carry tranquilizers in their pockets to protect themselves" to administer as they see fit, no permission from administration or from parents were needed. Of course some staff members abuse that permission. PRNs drugs were found missing, parents were accused of stealing them, clearly my son was not safe with drugs floating around.
Where are the rights of the autistic that protect them from excessive use and abuse of drugs? They can’t speak, they have no rights.So if drugs make some autistic crazy violent and my son gets hurt or, if he has an opposite reaction to drugs and ends up hurting himself or staff, whose fault do you think it is? Who is responsible?
If drugs change the personality of an autistic person and hurts loved ones, hurts his housemates/peers and staff members, whose responsibility is to stop given these drugs?
So, when on that February 11, 2002, an angry caregiver said to me: " What were you expecting? " I was shocked and hurt, but indeed, what was I expecting? That was the date that Danny got Zyprexa. The group home wanted him in a psychiatric ward and on large amounts of antipsychotics. They got it! A drug that their own physician wanted for Danny, on that day of June 1999.