Yesterday was Thomas's therapy and Dr. K. had said in an email previously that he wanted to address Thomas's cognitive deficits with both of us in the room. I was happy that he was going to take my email seriously that I had written a couple days ago about treating those symptoms of Thomas's.
It began with a lesson in schizophrenia for Thomas. Dr. K. told Thomas about the positive, negative and now cognitive symptoms of schizophrenia and quizzed Thomas afterwards on each one. Even I was pulled into the quiz which cracked me up because when I was asked about negative symptoms I drew a complete blank. So much for all of my education on this illness. I am terrible at quizzes though. The minute someone verbally asks me how I feel, what I think, or if I know something I imagine I must look like a deer in headlights because that is what I feel like inside. Needless to say it went like this:
"uh...um...uh...(thinking to self--WHAT IS AN EXAMPLE OF A NEGATIVE SYMPTOM??????) um....flat affect?"
I passed the test but wanted to kick myself for not rattling off every last one of them. Quizzes, the bane of my existence.
Then we went on to cognitive symptoms. I watched Dr. K. as he broached this subject with Thomas and I could tell he was struggling. I have seen this in the past when he has had to tell Thomas something about the realities of his illness. It's like he doesn't want to hurt Thomas's feelings and he wants to protect him. It's admirable and I love that he cares so much but I really wanted to jump in there and just lay it all out on the table. I believe Thomas can handle the realities of his illness. I've had many talks with Thomas about his illness and every time it has gone fine. I suppose I do a little protecting myself but I'm his mom and I'm used to breaking bad news to him and his tender heart and he handles it well every time. I believe the approach you have to take to talking about this illness is to come from a place of caring but not be sad (or really have emotion at all) about what you have to say. In this case the facts are harsh but when delivered in a matter-of-fact way they are easier to take on.
Thomas received the information well and was relieved when he learned that his terrible short term memory issue and his processing of information issue is due to his illness. Finally, an explanation for why he's struggled so much. I had never had this particular conversation with Thomas because it has always just been what it is. The family takes it in stride for the most part and just works with the deficits. Like with making dinner the other night, I stood by his side every step of the way and gave directions one at a time. Had Thomas had to make the dinner on his own it would have been a disaster. I love him and I work with him and I always will. I can't change that he deals with this so the next best thing is teaching him how to live with it.
Then, in therapy, it was quiz time again. How did Thomas feel about what Dr. K. had just outlined about cognitive deficits? He really couldn't put anything into words so Dr. K. asked him if he felt relief and Thomas agreed that was how he felt. Then Dr. K. turned to me and asked me how I felt about these deficits. Uh oh. Quiz time. My answer was "sad" and I immediately wanted to reel that answer back in because Dr. K. shot me THE LOOK like what I said was the absolute worst answer I could have given. He paused for a minute and then started to ask me something and then stopped and paused again and finally said,
"I am not mom's therapist so I won't question her about that."
NO! If I answered the wrong way then please, question me. WHAT HAD I DONE WRONG? WAS BEING SAD OR VEBALIZING THAT I'M SAD THE WRONG THING?? I looked over at Thomas to see how he had received that and it didn't seem to really affect him so despite turning beat red and feeling like my face was on fire, I stuck with my answer. Sad. Wasn't it okay to feel sad that Thomas has to deal with these things???
All in all the therapy went rather rocky, I felt, because I sensed Dr. K. trying very hard to protect Thomas's feelings. I guess I was just coming from another school of thought on this one and that was to get the facts out there and then clean up any aftermath after the fact. As such, we left therapy and all I wanted to do was explain to Thomas why I am sad about him having these deficits. After being left with my flaming face and accompanying guilt I felt I had to hurry up and explain to Thomas why I said what I said. When we got in the car I told him this:
"Thomas, I am sad for two reasons. The first is that you were dealt such a rotten hand and ended up with schizophrenia. I think it is so unfair and you didn't deserve to have to deal with this. I don't want you to feel like you have to protect me in some way, though, because I expressed my sadness. It has nothing to do with you as a person, I just hate this illness. The second reason I am sad is because you have dealt with this for years and for all of those years I didn't know that you had an illness and I thought you were just being difficult when in fact you were truly struggling with trying to remember things, among other things. I am sad because I yelled at you, I took away the things you loved and I was angry because you didn't do things like remember to do your homework or ask your teacher something or remember to be home at a certain hour. I am sad because I wish I had known differently and had treated you better."
He seemed to receive that well and I promised him that I would continue to work with him like I have since I learned more about this illness and how it affects him. As for therapy, there will be a couple more sessions and a few questionnaires to fill out over the coming weeks about what Thomas deals with. We were told, after being handed our first, that the next one would be 200 questions long. Thomas expressed to me after therapy how excited he was to be filling out questionnaires and I've got to say I am with him on this one. I want to weed through everything and figure out what's going on and see what it is we can fix and what it is he will have to live with for the rest of his life.
Friday, February 13, 2015
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