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.
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