I wrote the following post as a response to a discussion about the exhaustion of caring for our kids on Michael Schofield’s yahoo group of parents with mentally ill children:
All I can offer is the picture of a teenager who has been dealing with the voices and hallucinations since childhood. We didn’t realize he had them until he was about 9, keep that in mind as you read.
Tim had, what we called, a very active imagination as a child. He had imaginary friends (we thought) and we accepted that as fine. When he talked about other “people” he talked to, we accepted that idea, thinking it was an active imagination.
We dealt with the rages and comatose behavior as symptoms separate from the idea of his “imaginary friends”. When we finally became aware of what was really going on, we still didn’t really correlate other psychotic behavior with the voices. We didn’t know what we know now. But Tim’s “friends”, while still there, he spoke less about as he got a bit older.
When we finally put all the pieces together, at about age 11, we worked hard to instill the idea in Tim that his voices weren’t good or bad, but, in answer to his questions to us, we did tell him that we couldn’t hear them, but we believed that he did. Around 11 or 12 he began volunteering information about them – there are three, that we are aware of, with distinct “personalities”. Only one of his voices – “The Screamer” he calls it – scares him. As “The Screamer” became more prevalent, this is the voice that told Tim he was bad, suggested he kill himself, demanded he hurt others, or run away. He began to learn that, if he would ask us or his therapist for help when “The Screamer” was overtaking his thoughts, it would help. This was before meds, and way before clozaril. His other two voices he has described as one, scared / paranoid of everything and one, helpful and friendly. We suspect, from things he has said, that they have names, but he has never shared the names with us.
Tim was, by this time, very aware that his voices are in his head only, and he went through a period where he was very angry that he had them. He figured out all on his own that this wasn’t “normal” and started to refer to himself as “bad,” particularly when he gave in to doing what they prodded him to do. We tried – and continue to try – to let him know that the voices don’t DEFINE who he is. It hasn’t been always easy to keep our cool, particularly during periods of deep psychosis, but we constantly work – as do his therapists – to reinforce to Tim that he is NOT his voices.
Tim has never identified the voices as part of some other world – he relates to them sort of like shadows – not always visible, but always there, behind him, around him. The clozaril has helped, to an extent, tamp down their intrusion into his life, but he still has them around most days, and will periodically lapse into complete psychosis – mostly rage, followed by a prolongued (hours or days) of catatonia, when he is all in his head, and getting him out is difficult.
Tim still carries the thought that having the voices is not normal and means there is something wrong with him. This is good and bad – good, because he takes his meds religiously because he knows if he has a disease, medication helps keep him well, and bad because he has this concept that there is something wrong and different about him. It’s also bad because if he is trying hard to “be good” (read: stay present and out of psychosis), he will deny his voices are still around to try and appear “normal”. This is what we’re working on now – continuing to reinforce that the existence of the voices isn’t “good” or “bad” – but there are helpful and not so helpful ways to deal with them. His “paranoid” voice has issues with personal space and noise, and seems to be the voice he hears most when he has anxiety. “The Screamer” seems to be most prominent seasonally, and seems to be the trigger of most psychotic behavior. The “friend” seems to be most prominent right before / at the beginning of periods of mania – not sleeping, constant giggling, nonsensical speech, etc. He has expressed that he can “shut them off” – or out – but usually this requires some other activity that takes all his concentration, still. Like a movie (the more action the better – more to concentrate on), music, preferably in headphones, sports. He will not read – too much in his head. It takes all his energy to work on something at school at his desk – too much in his own head. If he is struggling to stay out of psychosis, he will self-isolate by sleeping if there is nothing to keep his brain engaged.
Tim draws and paints almost daily – the only activity that is “in his head” (where he has to think to himself) that he enjoys.
Tim has lost, it’s been estimated, somewhere around 20 IQ points since the age of 6. This has been attributed to the psychosis, but no one can say for sure. He scores high in patterns, sequencing, and memory, but low in language (both expressive and receptive). I’ve been told it’s “unusual” to have as disparate of scores in these areas as he does, leading us to believe that the psychosis may not actually be lowering his IQ, just his ability to create and process language with the “outside world”.