Friday, February 14, 2014


OK, let me see if I can put this together in a coherent way so that I get my point across.

Yesterday Thomas had therapy. I was called in to help give an update (Thomas is doing pretty good! :) ) and then his therapist spoke. He first talked about the meds Thomas has been on and said that Thomas had been good thus far in his treatment because he hadn't protested his meds. I told him that he actually had at a few points in his treatment and he said that he had not been aware of that. This was not true since I have let him know every time because I was worried about Thomas because when he was saying that, he was in the throws of his worst episodes. He acknowledged my correction and went on. He then told me he had something to say that wasn't going to be very popular and that might upset me. My eyes narrowed and I looked directly at him and he put up his hands in defense and said,

"Uh oh, Mom's mad already."

To which I responded that I wasn't at all. He went on to say that he had just read about a small group of people in England who don't believe people with schizophrenia shouldn't be treated with medication, that they needed to learn to deal with their illness on their own. The way he said it was in such a way that he believed this to be a viable option for Thomas. I was enraged! I shook my head and stayed silent and he asked me if I was mad. Everything about me screamed that I was but I put my hand up and I said,

"No, no go ahead and speak. I am open to hear anything you have to say."

 That was my well-practiced diplomacy in action. I have learned that everyone has a side and I have learned how to hear people out. He went on to say that Thomas had had several trials of anti-psychotics that hadn't worked and that he had had so many side effects. He said he just wants Thomas to be happy. I sat there in disbelief as he talked (which I can't write out everything here) and he essentially was giving permission to Thomas to stop his meds! I was beyond angry at this point as I do not agree with him or his little group of people in England that he spoke of. He looked at me and could see that I was seething and he gave me the floor. I wanted very much to protect Thomas from my anger because therapy is a place where he is supposed to feel safe and I knew my anger and his therapist's defensiveness was affecting him by the way he was squirming in his seat. Then I said this,

"I would argue that Thomas is doing better now because of his medications. Sure, the clozaril was causing side effects but since the addition of the Latuda, I have seen him brighten up and I believe that the reason all of this is possible is because the Latuda is working and perhaps it's working in concert with the clozaril to cause these changes."

He began to back down a bit but then said that some people are treatment resistant and medications aren't an option for them. He said that sometimes what they have left is therapy to help the symptoms. All of what he was saying was implying that all of this was true for Thomas and as Thomas sat by and listened to this all I could think was,

"Terrific, let's give the "highly suggestable" (the therapist's words in the past) schizophrenic kid who often times doesn't make informed decisions and who will change to fit any situation or person he trusts, permission to stop his meds."

Then I said to him, and bear in mind these exact words have come out of the therapist's mouth too during more than one occasion,

"I have read multiple sources saying that if you take a person off of their meds and they have an episode and then you try to get them back on the meds that the next trial of meds isn't as successful.

I went on to say,

"I have also read that if you do this kind of thing over and over that eventually the medications don't work anymore and you are left with a very sick, untreatable person with schizophrenia."

I don't remember all that he said but he defended his stance and he tried to calm my anger too. He asked Thomas how he felt about what he was saying and if he felt he needed his medications and if he wanted to stay on them to which Thomas replied,

"I don't care. I'm fine with whatever."

His therapist then clarified this,

"Do you want to be on medications?"

To which Thomas replied,

"Yeah, I don't mind taking them."

I found a certain kind of relief in that but was still very angry that the therapist had brought all of this up as an option especially now as Thomas is improving because of the addition of one of the Godforsaken medications he was trying to make Thomas stop.

Who does that? After EVERYTHING he's said over the years about the importance of Thomas being on medications, after WRITING A LETTER TO ANOTHER DOCTOR (that I have a copy of by the way) THAT HE HAS TRIED MANY DIFFERENT TYPES OF THERAPY WITH THOMAS AND HE LISTED HIS SOURCES AND TACTICS AND SAID THAT HE HAD BEEN UNSUCCESSFUL THUS FAR IN HELPING THOMAS. After all of that, after ADMITTING that THERAPY ALONE had been unsuccessful in some aspects of Thomas' treatment he was now advocating that we STOP MEDICATIONS too?!?!? So, what exactly are we trying to accomplish doctor???

The thing about all of this is that I am probably not articulating here to you the reasons why I am so mad. Yes, it is Thomas' body, he is an adult, it is his choice what he does with therapy and meds however he is a sweet, a lot immature for his age and despite my best efforts to educate him he is largely unaware of what it means to have schizophrenia. For a trusted person like his therapist to give him permission, to support stopping meds, is a free pass for Thomas to toss aside his own sense of self and attach to his "trusted" therapist and do what he says. There are 14 kinds of wrong in the entire exchange that took place yesterday afternoon.

Then therapy went on to talk about Thomas' self esteem and how he is unable to hear people and feel the joy from people's compliments of his appearance and thoughts and behaviors. It was a drawn out discussion that led to a very sad realization that Thomas has no self esteem and is adrift in a world where he can't even call upon past accomplishments to bolster his self esteem when he is feeling down. With that, I was asked to leave, which was fine by me because I was seething about the earlier conversation and sad for my son.

Here's the kicker though.

I got called back in at the end of the session and sat down and his therapist said to me,

"I called you back in here because I think you need to hear this." what?

He went on to talk about Thomas' self esteem issues and then said,

"While Thomas is unable to find value and comfort in other's compliments, he is pumped up when he thinks about (insert massive long-entrenched delusion here). When he thinks this thing about himself he is filled with a huge amount of self esteem. It appears this is the one thing that doesn't ever fail to pump him up."

He had told me that "I need to hear this" but was he hearing this?!?!? Was this not the response of a very sick, very delusional young man most likely in need of his medications????? I was floored. Here it was, right in front of us, the exact reason Thomas was being treated with medications and we had earlier been talking about stopping them altogether and relying on therapy that the therapist had failed at in the past!!!

I'm still shaking my head. What pains me is that right now, here, I am not getting across to you the sheer stupidity on his therapist's part for even suggesting going off medications altogether and basically hoping for the best.

C'mon, seriously?!?!? Do we not take into account the now two years of life in our home with me daily trying to keep my son safe and sane? Do we not take into account the 3 hospitalizations. Was he not at all thinking about the toll this takes on me too and just exactly what would happen in our home, to Thomas and to me and his dad if we were to stop medications altogether? Can you imagine the pain, the grief, the fear, the demise of familial relationships that would happen if Thomas were to stop medications but continue to go week after week to therapy that most times fails to help him?!?!?

OK, all right, I've said enough. I will be interested in your thoughts on this.

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