When we talked to Tim on the phone last Thursday, he seemed to be a bit homesick. “When are you coming?” he asked. This is a big change from when he was inpatient. He used to love to play the punishment game with us every time he was in the hospital. The first 2-4 days, he’d call us just to hang up on us mid-sentence, as if to say, “I have the upper hand, and I’m going to show you how mad I am you put me here.” Then he’d refuse to see us when we came to visit, because he knew he didn’t have to come out of his room to see us, even if we were there in the flesh. This would degrade into being willing to see us, but only to play Uno or some board game – no conversation was allowed, or he’d bolt out of the visiting room. Finally, when he’d had enough of being in the hospital, he was willing to talk to us about what he’d been doing, how he was feeling, and his desire to come home.
The longest he ever went inpatient was 38 days straight. He’s been in residential treatment for 26 days today, and it’s already sinking in that this is more permanent than the hospital ever had been. So we made the drive up to see him yesterday, and decided to take him off-campus for a few hours, to cruise through Target – his favorite place in the world – and to lunch. We were nervous that we’d get him off campus and he’s start to ask to go home. I knew I couldn’t take it if that happened.
But it went well – he looks great. His face if nearly free of acne – the first time since he hit puberty – he was clean, dressed well, and he’s lost nearly 10 pounds. And he seems happy – he talked about the kids on his floor, the staff, and his teachers. He seems to get along with everyone except one kid on his floor (the staff had told us the two of them have short fuses at times and can get on each other’s nerves). The voices are at bay at the moment, he said, and he was very definitive at lunch that he should have a salad, not a burger, because he was learning to eat better to lose more weight and feel better. I nearly spit diet soda across the table when he said that. He didn’t even finish his salad, saying he was full.
He kissed me goodbye when we dropped him off, a few hours after we’d collected him, smile on his face. And I’m encouraged. I have been carrying such guilt since we made the decision to put him residential and, for the first time, I felt that we made the right choice. He sounds happy. He looks healthy. His days are highly structured and he has professional support 24/7. I still have a little dread about how his first home visit will go – I’m afraid he’ll just regress back into his bad habits – but I feel, for the first time, this was the right decision.
Hello, Chrisa,
I am interested to see that you attribute some sort of control game to your son's behavior. I agree that there is a control issue going on because I have seen it with my son. Today, I stopped talking to him because he doesn't answer me or my husband when we ask a question. A little bit of what we get from him. The result? He is almost begging me to interact with him. I believe that time away from the family environment allows people to grow. When my son got out of hospital recently, he acted a bit strange for while. I attributed this to picking up habits from the other patients.
Rossa, I HATE the things they pick up inpatient. I remember how much I dreaded when Tim was moved from the pediatric ward to the adolescent ward, with kids who cut, are substance addicted, etc. VERY colorful vocabulary.
I absolutely think our kids give us more grief – in terms of the manipulative behavior – than they give to school or other caregivers because they feel safe with us. They can let it all hang out and we're always there for them. Doesn't make it easier. But you seem to have found the ticket – Tim always craves attention, negative or otherwise – so ignoring him might ignite anger initially, but eventually he comes around. Even when he would hang up on us or refuse to see us inpatient, when he finally called and said, "you can come see me," I would skip a visiting day. It killed me, but it made the control behavior end.
I don't know how I came across your blog. I am happy for you the visit went well.
I am happy your visit went well. Sounds like things may work out very well for your son to be where he is. Blessings, Susan
Wow, that must be comforting. He's adjusted well to his new environment – and he cares about taking care of himself. Bonus!
I spent ~ 31 days in the hospital, and I didn't like it either!
I'm glad to hear that you are getting your sleep on track as well without medication. I'm a slave to it. Since I stopped concerta and went on trazodone, things have really calmed down, so maybe they will for you too, the guilt at least, especially given Tim's current condition. The last time I saw something was in the library, and it was brief. They told me the numbers and colors would never go away. I bet Tim has it like that but worse, the voices, I mean, but if they chill that screamer, life is good.
As far as depression goes, you say it comes after an episode. I experienced something like that a few months following my shallow episode – whatever it really is. I didn't fully wake up again until August, but I could function then-ish, had a lot of delusions about abilities. I wouldn't call it depression so much as being drained of the joy of life and delusional. I had a bout of depression when I was in school, and whatever followed my problem was completely different and much worse.
Well, blessings to you and your son's continued happiness.
~Wondering Numbers
Sue, thanks for your wishes.
Numbers – it was quite a relief that he looked and sounded well. I don't think "The Screamer" was very prevalent this episode. We talked about it about it and he said his "Little Girl" came for a visit. She's his friend in his head, so while her timing can be irritating, she can actually be a comfort to him at times. Sounds like your voices/delusions have a bit of Little Girl's flavor to them?
The next challenge for Tim will be, if I have to guess, the time change – when the days get short and it's dark early. That's when The Screamer usually comes out full-force, followed by deep depression. I'll be holding my breath a little until then.
I'm glad you seem to be pulling out of your depression. Keep in touch!
i am so glad you had a good visit! the psychiatrist we see is affiliated with that hospital but a different branch so i am very interested in your experience with it. hope that things can stay calm for a while. how are you adjusting?
Hi Chrisa,
You write such beautiful and emotionally moving comments on my blog that I thought it was time I came here and did my best to return the favor. On my blog you said Tim is still having breakthrough psychosis on the Clozaril. Jani still does too. I think in severe cases the psychosis is not going to go away, even on something as powerful as Clozaril, but if it is giving him any benefit at all then it might be worth staying on it. He sounds like he is more himself now. The occasional psychotic episode is going to happen, Clozaril or no Clozaril. I guess you have to decide if you feel the positives of the drug outweigh the negatives. They do for Jani but obviously I can't answer that for Tim. I don't see the meds as saviors. I see them as a rope that our kids hold on to to keep them from falling down the cliff. It makes life for them just a little bit more livable.
Thanks again for sharing your story on my blog. With the new http://www.janisjourney.org site there will be a blog ring. Would you be interested in me linking your blog from mine?
Michael – thanks so much for visiting. I'd love to link. I feel us parents have to keep our twisted little fraternity together.
I guess I'm just so wasted from the med roller coaster. I hate that my kid is basically a guinea pig. Maybe I just wish the rope was stronger.
I take a lot of strength from your blog, even when you're down. It helps me know that, in the tough times, I can get through it, because others are doing it too.
Chrisa,
You may be interested in reading Ron Unger's latest blog "Mental Disorder or Evolved Mental Strategy?" He summarizes my own thinking very well on the behavioral reasons behind mental health disorders. I won't post the link. (You can google it.) Unfortunately, the web site is hard to read if you don't have a newer browser.
Chrisa, thank you for your reply.
Yes, most of my subjects are little girl-ish until things get bad. The problem is that my light things will lead me into stressful situations, which brings out the adult content. Trey. Aliens.
My main problem is delusions/mild hallucinations/ thinking, especially judgment. That's why I'm on such a high dose of abilify (usually they stop at 30mg, my new doctor wanted to keep it at 45mg, and abilify is light stuff, nothing like c). I can't even imagine hearing those things all the time though. They scared me as an adult. I've heard things a few times, mostly music and warnings, which were right, I might add.
The doctor told me that it doesn't matter what you take, some of that stuff will come through because I asked about switching. It's probably helping Tim more than it's harming him given his current, happy attitude. I could never understand your worry, however.
Rossa:
I do have a new browser, and was thus able to read Unger's ideas.
Some of those which really struck me were the way that – for instance – fever and anxiety are alerters. They create problems and solve problems. Thus, they are dynamic.
Psychosis – independent of a mood disorder – defends against extreme mood states. Thus the mood is neutral. Also control is important, especially in the view of awareness but no particular idea. It can be for some of the same reasons as creativity, or for scarcity.
The implication for the therapist is to be more open-minded. Much cognitive behavioural therapy is based on the prinicple of 'radical inclusiveness'.
Christa:
It's good he's getting satiety, and not even finishing a salad. The loss of acne is also good – it happens to quite a few psychiatric patients when treated well. There is an example in Torey Hayden's Murphy's Boy/Silent Boy when the subject is the age of Tim.
Uno and board games are good. What about next time he wants to play a game, introducing the 'Ungame'? This is a very Californian game full of questions of all sorts. 'Dvorak' card games are fun too.
Debbie – as far as the hospital…Alexian? We have a great relationship with our psychiatrist.
Adelaide, I can say with certainty, that psychosis for a schizoaffective is NOT mood neutral. It is mania.
I was confused by your comment about his acne clearing up because he's being "treated well". Does that infer that he wasn't treated well at home? He's still in the honeymoon period at residential as well – and hygene is a major documented indication of mood and level of psychosis.
The ungame is a little esoteric for Tim. He likes and responds better to apples to apples, another introspective game. With an IQ of 59, some of the games that are a bit abstract give him more anxiety than relief. He's much better with patterns.
OH – almost forgot. Ron Unger is a quack. I put him down there with Jenny McCarthy, thinking they can "cure" serious illnesses.