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".