March 11, 2007

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

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

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

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

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

March 10, 2007

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

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

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

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

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

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

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

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

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

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

This article made me think.

 

March 6, 2007

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

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

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

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

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



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

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

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

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

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

Entry for March 3, 2007

I observed two facts:

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

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

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

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

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

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

As remote as possible it was making sense.

We had to look into a every possible explanation.

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

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

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

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

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

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

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

Entry for March 3, 2007

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Entry for March 2, 2007

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

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

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

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

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

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

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

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

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

Entry for February 25, 2007

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

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

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

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

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

Entry for February 23, 2007

Elections are approaching and promises are being made to the right and to the left. Today, I read in The Star that "Tory promises $75 M for autism".

It says, "A Progressive Conservative government would reduce waiting lists for intensive autism treatment by investing an additional $75M annually to help parents and children, leader John Tory is promising."

It would be wonderful if he keeps such a promise.

The article ends, "If elected, Tory plans to use the additional funding to give parents more flexibility and choice in their treatment options, including bankrolling accredited outside providers."

Hmmm..."bankrolling accredited outside providers".... how far could we go to get "accredited outside provider"? Europe?

And, "to give parents more flexibility and.....CHOICE IN THEIR TREATMENT OPTIONS....." !!!!

Asking for a choice of treatment is how we got in trouble with the group home where Danny was a resident. In 1999 we wrote a letter to the Ministry of Social Services while they were doing an investigation/audit of the management of the group home. In that letter we just wanted "a choice of treatment without prejudice". The consequences were tragic and unexpected. We were threatened, the more we asked the management to stop the use of drugs on Danny he was given more, against our objections and we had to consent under duress. Further, in retribution, Danny was targeted for all sort of abuses. Appalled caring caregivers let me know of every detail and of every bruise found in his body. The abuse was severe.

By Victoria's Day of 2004, I could see that Danny was at the end of his rope, lashing out blindly to everybody, anybody, so badly that a caring caregiver said to me "I can't take care of your son. I don't feel safe with him anymore. He is being primed for violence." I wanted to bring him home but I was leery of doing it, remembering all the threats, so when a member of administration hand Danny over to me and I just run with him.

Entry for February 21, 2007

I read a few articles in the paper that made think. One was "What lies Beneath" by Andrea Gordon of TheToronto Star, a girl diagnosed with Bipolar at at very early age and treated with antipsychotics. The description of her behaviour is very similar to a High functioning autistic or Aspergers. Made me wonder if mental illness really exists in children.... Her mother is concerned of her future as she is approaching her teens.

Then I saw in CBC NewsWorld The national "Finding Normal", about a child diagnosed with ADHD, eventually state-cared and giving more psychiatric diagnosis and more drugs until his grandparents intervened and with the help of a psychologist Dr. Mackay became his guardians.

Dr. Wendy Roberts assisted with his detox.

His grandparents said something I had been saying about Danny, that their grandson J. 'was giving mental disorders that he didn't have and drugs that he didn't need'.

I wonder how many children like J. are out there and also how many adults like my son in state-funded group homes are diagnosed with psychiatric disorders that they don't have and given drugs that don't need.

Now, I read about "New genetic link to autism" that is located on the chromosome 11 and affects especifically a gene called neurexin 1 and that 's not all, autism probably involves more than 100 genes. The question I have is what terrible things we had done to the human DNA? Scientist can retrace our evolutionary steps to when we were a one cell molecule but cannot retrace what factor/s has damaged our DNA? I read that our genes are changing/mutating all the time and that is a "normal" way of life or for the better ???? No comfort there.

DANNY'S LIFE, the beginning...

This part is just to talk about Danny as a non-verbal autistic and his life as such. What happened before he was born, after birth, his childhood, interaction with teachers at different schools, etc. Every detail of his life as far as i can remember, with pictures, assessments and how our decisions, as his parents following the advice of doctors and "experts on autism", affected the quality of his life.

I decided to be on contraceptives while I adapt myself to Canada and learned its language, but after 2 years of daily headaches I had enough and it was time to start a family. Six months passed and no pregnancy, I was scared that I couldn't have babies but 3 months later my gynecologist confirmed my pregnancy. Two ultrasound tests showed my placenta was low, according to the technician it wouldn't prevent me to have a normal delivery but my gynecologist angrily said he was responsible that I could bleed to death and a c-section was in order. Then on my 5th month of pregnancy I started to "spot" and my gynecologist ordered me complete bed rest and to be sure confined in a hospital. Scared I spent two months in the Toronto General Hospital Hospital not exactly "confined" to a bed and terrified of loosing this so awaited baby. In the hospital I felt safe but in bed 24 hours tired me out. Besides anybody knows a hospital is not a quiet place, nights were awfully noisy and unable to sleep I decided to ask for "sleeping pills" when that didn't help I asked the doctor to let me go home. But after 2 weeks at home I started to "spot" again and so, terrified I went back to the hospital....and to more sleeping pills.

I remember my doctor telling me that he was about to go in vacation and if I wanted he could deliver the baby and my answer was, "Let the baby decide when it wants to be born". Five days before Danny was born, the nurses started to get concerned, the baby heart rate was slow and with every shift of nurses their supervisor came to check on me, the question was always, "when the last time the fetus moved?" and under their breath commenting about no knowing where my gynecologist was. Finally, my gynecologist came back from his vacation, murmuring angrily something about, "All the time they knew where I was, they had my phone number" and immediately ordered an emergency C-section.

It was Saturday early in the morning when my husband received a phone call from the hospital. A nurse explained the urgency, he was told that the "fetus was in distress", suffering from lack of oxygen, that the baby had anoxia or hypoxia, words to the effect, and that an emergency c-section was to be performed on me. I wasn't told anything. I just went through the operation.

Danny was born on June the 1st, 1974. After his birth he was kept away from me for 3 days without an explanation. Later, I was told he had jaundice and was kept under the lights and when I asked what was being fed the nurse said "sugar water".  On the third day, at night, walking carefully holding my belly I peered into the nursery window to see my baby, there he was in the incubator crying, his eyes covered and kicking with his legs the end of the incubator. When finally the baby was brought to me I noticed immediately that he was unable to nurse, but nobody showed concern and after 12 days we were discharged with a set of bottles and instructions. At home after a month of trying to nurse him, in pain running fever from infected impacted breasts I went to my doctor's associated (ignorant doctor) and finally to a pediatrician who told me to put him on formula and the baby started to put on weight.

The same pediatrician from the hospital saw Danny regularly for about 8 years. He received his vaccines according to the schedule of the time. At three months, he cried a lot, the doctor said, "he is a "colicky" baby" and surely he was teething and some babies had diarrhea from teething. On and off he had diarrhea, they lasted for days together with severe diaper rashes. And so I was told to give him apple juice for his diarrhea, zinc cream for his rash and Anbesol for teething and I did ! nothing worked!

After one of his bouts of diarrhea that lasted 5 days I gave Danny Kaopectate which stopped the diarrhea instantly and he was able to eat, he really was starving baby! At 4 months he followed me on his walker, chit chatting on his own babbling way. At 6 months he was freed from the bottles and discovered meat, he just love meat! with no teeth I had to shredded the meat fast. At 11 months, he walked and over night, got 4 teeth. He was a very bright baby, happy, smiling, very social, curious and from sesame street, and from us, learned the alphabet and numbers in three languages and he loved to show off on request. He loved to sing the songs and asked for drinks, cookies. He was very inquisitive, we thought we had a gifted child, so advanced. 

Then, on January 18th, 1976, at the age of 19 months Danny received his MMR vaccine and a couple of weeks later he developed a temperature of 104c. I called the pediatrician office and his receptionist relayed his message that it couldn't be 104c that "thermometers from drugstores were not very reliable" and she added to give Danny a baby aspirin every 4 hours. I did that and every time his fever went down to 102 and then spiked to 104. The fever lasted for 3 days apparently with no ill effects. He was just sluggish in the mornings.

On April a young daughter of a friend came to visit, wanting to play with Danny. While I went to the kitchen to get us something to drink I heard a bump I ran back to see Danny slumped by the corner of the fireplace stunned I picked him up and asked the girl what happened, she said she had lifted him up and while swirling him up on her arms the baby slipped off her hands and fell hitting the corner of the fireplace hitting the left side of his head. Seen me distraught the girl left and I called the pediatrician office for advice and his receptionist relayed the doctor's message to wake him up every few hours for the next 24 hours, which I did. After that, gradually, Danny became depressed, confused, forgot his ABCs and numbers he knew in 3 languages. He would pull chairs to reach light switches to turn the lights on and off, slowly and deliberated. To climb counter tops in the kitchen to open and close doors, all that done with vacant eyes in a trance-like state. He got stuck spelling the same two words "s-a-l-e sale!", "e-x-i-t exit!" and wasn't learning new ones.  He forgot how to play with his toys and to make words from his block letters. With his arms would sweep the blocks off his table. Ripped pages of books. Later he would become rambunctious happy, not able to concentrate on learning anything, he had a beautiful smile that spelled trouble, he tended to run unexpectedly very fast. He would say full sentences about things without looking at anyone. While walking with him and his baby sister on the stroller I had to hold him behind the stroller, covering his baby hands under my hands, otherwise he would get his fingers in every mailbox or touch things and people. His baby sister born on November 1975 was at 11 months already talking words with meaning and when I mentioned that fact to the pediatrician he just said, "boys talk later". 

Babysitters were concerned about Danny's delays and behaviours and let us know. The earliest was on November 1975 when I spent 10 days in the hospital delivering his baby sister. This particular babysitter told me that Danny, at 15 months, was not like the other babies he had cared for, he wasn't not obeying, not potty sitting with the others and that she knew the difference she had cared for babies for over 2 decades, we dismissed her concerns. We thought Danny was too young to potty training. Another babysitter noticed that  Danny was not responding to his name, didn't sit with the others and couldn't get him interested in reading or playing. We dismissed their concerns because Danny knew all his letters and numbers in three languages and knew songs, so we thought we had a misunderstood gifted baby. 

All that changed on his second year. I started to get concerned but his father thought it was too early, babies take their own time to develop. On his third year on August 1977 I couldn't wait any longer I had to know and so before his younger brother was born, I asked for help. Two nurses from VON came to our home to test Danny. The older nurse placed the blame on me, she said, "lack of stimulation" but the younger one shook his head and put me in touch with a new school called "Adventure Place". Soon after a psychologist and teachers interviewed us at home and while waiting to be accepted they sent a teacher to teach me how to teach Danny reading with the help of chocolate like "Smarties".

In order to get accepted to "Adventure Place", first we were sent to see a psychiatrist who made us wait 45 minutes, at such time we were wondering how a psychiatrist would help Danny if he couldn't speak, at no time we suspected that we were the ones investigated as parents. The psychiatrist after talking to us for 10 minutes he determined that we were "normal folks" and charged us extra money to say that. Danny was sent for three tests at the Sick children and finally the psychologist from "Adventure Place" determined that Danny had "Autistic features", meaning that Danny was not completely "autistic" because he had eye contact. 

Finally, on March 1978 Danny at the age of 3 years and 9 months went for special schooling at "Adventure Place", where he received excellent education for 5 years until he was 8 years old. A pity that he couldn't go longer. The people there were excellent. At the same time we were advised to contact Geneva Center and to accept the help of Homemakers.

After Danny and his sister got sick with "impetigo" a very contagious rash that didn't affected their baby brother who was just 10 months at the time, I accepted the Homemakers to come to my home. They were very kind ladies and the program gave me two days from 9am to 4pm of free time to do whatever (I was so tired I slept in the subway). It went on until Danny's younger brother went full time to school.


At the age of 8 Danny went for another 5 years to a regular school and it was pitiful situation there. Still I have to mention in a positive note that the head strong teacher Danny had tried very hard to teach him and she was the first to encourage his artistic work. The school had a hard time managing his need to run. The teacher rejected assistance and the advice from Adventure Place and Geneva Center to give Danny breaks for a few minutes of running. There was so much trouble with his running that when we received a letter from The Clarke Institute of Psychiatry for a psychological assessment we thought the conflagration would end when these educate people in this institute would side with the experts recommending "running breaks" for Danny or some sort of arrangement. Instead we were further pulled apart and the situation got worse.

On October 1985 when he was 11 years old we took Danny for a "Psychological Assessment" at "The Clark Institute for Psychiatry". The first result gave him a mental age of 4, which angered his teacher who thought they use the wrong test. The psychologist sent us to a psychiatrist who fell asleep while Danny's father was explaining Danny's problems and woke up just to write a prescription for Thioridazine. No explaining adverse effects. We gave Danny his first pill on November 2, 1985 at night, a couple of hours before bedtime as prescribed, that night he woke us up at 1 am screaming, with wide wild eyes trying to climb the wall.

We saw that and noticed some the adverse effects, like hives and fainting, but we didn't connect his new impulsiveness to run to the drug. We didn't connect to the drug seeing Danny getting stuck writing or coloring until making a hole on the paper. We were told his inability to move in the mornings to get ready for school when asked to was "behaviour" more to it, he was testing our authority as parents. Urinating on his bedroom and inability to go to the washroom was also "behaviour" we were told to use "adversive" treatment in which he would have to mop the floor of his bedroom, every time more and more, after a year he was almost moping the whole house and he continued urinating on the floor of his room. The worker concluded her support telling us that she had to write in her report that it was not her who failed but we as parents failed to follow her advice. 

And I didn't connect to the drug when he would become "frozen" and forced to move he would scream and hit as he did to me one day when the car broke down. We ended up in a police car. 


In that time after Thioridazine there were several changes on his "behaviour" like taking to climb roofs and running twice to the subway both times police was involved. His father nailed the windows and we kept doors locked.

We had new home worker and after a summer break she came back and notice Danny's hands spasms. Danny was coloring and suddenly would drop his crayon, his hands would stretched backwards, it looked painfully, his eyes would go upwards and his jaw would drop opening his mouth painfully for us to see and it would last no even a second and he would go back to his coloring with no memory of the episode.  Seeing that she thought it must be Tourette's Syndrome (TS), because his father had "nervous tics" and to check it out. Eventually, Danny was seeing by two specialists on TS who agreed to disagreed. Next year another psychological assessment and this time prescribe Stelazine with same effects. We promised ourselves that Danny wouldn't take anymore these kind of drugs. I wish we could have kept that promise.
 

Through the years slowly, painfully slowly, we realized as his parents trying to get medical help for his "condition", that there was a lot to learn about our 'medical' care in this country. We learned these professionals are not infallible. That many had no idea what was his "problem". Some were arrogant, intimidating, sarcastic if questioned. We learned that some doctors were more compassionate than others. That some doctors had "integrity" and some others not much. That there was a "Standard of care" of using these drugs on the "vulnerable" like Danny "to keep them safe" no matter the painful adverse effects. The same from our government completely disinterested on listening to us parents, our words worth nothing against "experts".

Much later, on psychiatric drugs, we found out that doctors are not in any obligation to disclose the dangerous adverse effects, we guessed in case that the patient was scared away. When drugs' adverse effects manifested doctors told us, "No, it's his autism". When drugs complicated his original condition Danny got diagnosed with psychiatric disorders. By 1999 we found out that he had like 6 psychiatric/neurological diagnoses besides his autism.


Doctors did not believe, recognize or acknowledged drugs' withdrawal symptoms and much less on a autistic. When Danny was taken off a drug we observed new strange "behaviours" and an increased in intensity of his autistic "behaviours". Danny became aggressive and worse he started to bang his head. Trying to describe what we observed to a member of the group home administration we were stopped and told that what we were talking about was called the "rebound effect". However, for doctors "withdrawal effects" and "rebound effects" didn't exist. So tight close is the minds of doctors protecting their drugs that one told us angrily, when we insisted that it was the drug causing Danny's problems that if our son got "worse off the drug, he needed the drug".

In our struggles to get a better treatment for Danny we encounter a wall and repeatedly we were told by experts and doctors that what they were doing to Danny was in "his best interest". We, as his parents, couldn't be heard, as the government told us "we have to trust our experts in the community". And, if we questioned the "treatment" as making Danny's condition worse, we were told that was the "standard of care". They had many other excuses some very silly, some with fancy wording. Their "treatment" never fails, we are the ones to be blamed or, easier blame Danny, after all he is the one with the "problem" and we do not want to see how "complicated" was his "condition" with so many psychiatric disorders! Danny, after all was also a non-verbal autistic he couldn't object, he was a nobody, and anybody could say anything of him and do anything to him and get away with it. Furthermore, when confronted these professional insinuated that we had "a secret agenda", wanted to "ruin reputations". They went on to tell other doctors that we were "in denial" over the "real" "condition/s" of our child. And, when all that fails, make threats not only to the family but to anybody that stood up for Danny and his family.The most disgusting done by these people "caring" for Danny was to take it out on him, to make him a danger to himself and to others and justify the use of Risperdal to the government. A representative from the government even said to us, "There is no shame in having a mental illness, I had depression and I was treated with Prozac for 6 months", no realizing that there is a difference between a person capable of speaking how the drug is affecting her/him and giving drugs to a child incapable of reporting the effects of the drugs.

We also learned that the "consequences" of their psychiatric "treatment" was expected and wanted. Some the drugs adverse effects were neurological causing extra pyramidal side effects or drug-induced "parkinsonism", meaning abnormal movements. Danny became double incontinent with Risperdal and he almost died from it and almost killed me. His ability to move spontaneously ceased and couldn't do creative artist work. Every day I would find him sleeping in a chair. Some autistic gained weight on risperdal, he lost weight and couldn't sleep. His drug-induced self-injurious behaviour went out of control. The use of major tranquilizers on the autistic is to prevent them to place any demands on the staff, making it easy to care for him. It was a shock for us to realize that was the end of their use of "meds", no interest on seeing improvements on our Danny.


Some caregivers in the group home spoke up on Danny's defense and were fired. Others stayed out of compassion. Through the  years we observed how Danny brought up the best and the worse on people of all kinds. Danny have put to the test every system made by men, we learned a lot about the educational system, the support system, the medical/psychiatric and he is still doing it. Sadly, we just go along for the ride, not able to do much.