My son is very resistant to leaving our house. In fact he spends most of his time in his room. Should I respect his choice even though it makes me sad that he is alone so much? Or is there a way to help him feel safe in other places? Sometimes I think if I leave him alone he will eventually decide to get out more, but he has been living this way for most of 4 years. And in some ways it is worse now because his Dad and sister no longer live with us. I just want him to be happy.
When I’ve had a psychosis, right after I get out of the hospital, I want to be in a small room so that sounds from tv, radio, or outside don’t trigger . Triggers can be maddening.
Depends on the psychotic symptoms that maybe still there as to why he’s still in his room.
I start small, like watch 1 tv show, or buy just a few groceries, I have to expose myself to these triggers multiple times before the right thought enters my brain first, rather than the psychosis thought.
It’s difficult to explain.
My son recently moved in with his girlfriend. Before this he would stay in his room and only wanted to be in there. For him it is his safe place. He feels at his best when he is in his room. We would try to get him to come out and be with the rest of the family but he was not always able to do this. Maybe he is happy in his own space??
Fundamentally - this is not very healthy. Talk with his psychiatrist if you can - but I think most clinicians would say that some social activity, no matter how small, is beneficial in the long term, even if its not that pleasureable for him in the short term.
Social deficits are a core symptom of the illness - one of the “negative symptoms” - and its hard to fight. Other than therapy and some vitamins that seem to help (see this page at link below)
there really isn’t much to help with the negative symptoms. But don’t give up, and there are always new research studies coming out.
Thank you for posting that.
For me, it’s hard to know when to push & when not to.
I alternate between trying to get my son to go out, even if we just drive - and letting him do what he wants to do.
I have talked to his psychiatrist who recommended their day group. My son tried that for a few hours, but created a lot of anxiety because he was afraid they wouldn’t let him come home. (he has been involuntarily committed 6 times.) He was also worried because in our state developmentally delayed and mental illness are treated in same programs. He was worried that he was developmentally delayed too and nobody had told him. Anyway, the teacher said he was not “ready” for program. Now the psychiatrist tells me I’m overthinking it.
His room is absolutely his safe place. When he does go somewhere with me and starts to feel anxiety he retreats to the car. He has told me when something makes him anxious he tries to avoid it.
I wonder if he really is happier in his own space, and whether it’s important for him to broaden his horizons.
I am going to look at that link now.
My son started with a new therapist about 8 months ago.
About 2 months in, she talked him into going to group therapy - it was art based, and he’s very good at art & enjoys it.
He was barely hanging on at the time, and being around just 5/6 other people kind of pushed him over the edge. But, I thought being around some other people might do him some good. It was only 6 sessions, and he could walk out for a break whenever he wanted to - or leave early if he needed to.
Looking back, that was the beginning of the long, slow slide that led him to the hospital. The therapist thinks so too. Of course, he could have stopped it any time by taking his meds consistently. I feel so bad about pressuring him to go in one of the times we got there and he didn’t want to do it.
His 2nd psychotic break at 17 was triggered by taking behind-the-wheel for driver’s ed to get his license. Two hours a day with strangers in a confined area with no escape was more than he could take.
Between then and now, he tried to take some classes at a community college - just one at a time, art and film which is easy for him. He’d get to the school some days & just couldn’t go in.
So, I agree they need something social, but we have to be so careful to listen to him and not push too hard.
If he was happy alone, I’d let it be. But he’s not - he’s as lonely as he is socially anxious.
I think I started small like driving around country roads or the back ways, group once a week at a rehab place for art, a few church functions. He now goes out a lot more than he used too. he is on his shot and I think that helps. He enjoys visiting and is starting to want to see old friends. Just keep suggesting things even if it is going out for food. That usually gets my son. A friend started taking him to a cooking class and that has awakened another realm of experimentation. You should have seen my kitchen but his creation was really different and tasty.
Thank you so much for your replies. I live in a rural area and know no one who can understand my experiences. I think I need to be patient. We do take drives; mainly for take-out! I’ll keep suggesting and encouraging but not too hard. I am going to try to be patient and remember how much he has progressed from 3 years ago. Now when we get in the car he will listen to the radio some. Before the voices would be too bad for him to do that.
Sounds like you should just keep doing what you’re doing.
At this point, when I know I have time for it, I ask my son where he would like to go out. Initially he often says he doesn’t want to go anywhere, but after an hour or so, he will ask if we can go someplace. It is usually to get a coffee, but that’s something. When we get there, we often will just sit with our coffee for an hour. He doesn’t talk much, and I often run out of small talk, but oh, well. We are out and around other people. I people-watch, and I think he is people-listening.
Its nice how some of the servers at some places get to recognize us and greet him.
things to try
try making an appointment with a psychologist, not the psychiatrist, the psychologist will talk for 30 minutes, supposed to be someone to talk to, here’s what my psychologist suggested for things to do, ways to get out of the house
NAMI - call or stop in to your local NAMI office, volunteer, attend meetings
Church - join a large church with different groups, attend group functions, I now goto knitting, quilting, lunches, volunteer to serve meals, etc. guys are different but there are bible studies, etc for men too
Volunteer - volunteer at Habitat for Humanity, the animal shelter, the No Kill animal shelter, different organizations
Adult Day Care - ask your pdoc, they can prescribe ‘socialization’ activities, for example there’s an adult day care in my area, but I don’t have Medicaid so going to adult day care would cost me $300 a month. But perhaps this is an option, they go bowling, have group, goto lunch, cover different ADLs (activities of daily living) like grocery shopping etc.
Social Security Ticket To Work and Vocational Rehab - I just talked to them, they have different programs, some through Goodwill, that will get him out to work somewhere, like a Goodwill store, McDonalds, or another employer who employs people with disabilities
Thank you that explanation really helps
Sounds like me and my daughter. I always brace myself for a last minute excuse not to go if we have made plans. She will go for walks with me and three days a week she goes with my sisters to work out with a trainer. I have signed us up to volenteer for a few things through our church; so far she will do outings if they are two or three hour streches. Maybe you could find something he might enjoy at your community center, weights, tredmill, swiming.
What you’re saying is exactly what it’s like for my daughter.She pushes herself to do more things outside her room but it’s not easy for her and sometimes causes a setback. She would love to have a job and be more social but hasn’t been able to do either.
What I found personally was that it built on itself, sort of like a snowball effect. The less I socialized, the less i wanted to socialize. The more I withdrew from everyone and everything, the more i wanted to withdraw. I began to react with more and more extreme anxiety anytime I then had to do anything outside the comfort zone of my bedroom.
What saved me was my cousins. We grew up together and had a very close and strong relationship long before I had my first psychotic break, and they would not let me go and refused to leave me alone. They invaded the sanctity of my bedroom, and forced me to listen to them and interact with them, and eventually go places with them. My parents also forced me to go places with them.
And the s.m.i. clinic forced me to attend group therapy meetings. At first i was terrified of them, but later i grew to appreciate them and i met 3 people in those meetings that i still remain in contact with. It really helps to be able to talk to someone who knows what you are going through.
I think most of our kids know where they feel the safest. It’s not always what we want and with my own daughter I try to respect that. With my daughter there were occasional times she would go out with me to dinner or a movie. She felt safe with me. Forcing my daughter to go out by herself rarely worked - she became more anxious because she already felt insecure and this just added to her feelings of being a failure.
Years ago I also remember when she lived in a group home the home would bus their clients to activities and what often happened is that everyone would sit alone in their own private world. That imho isn’t helpful or therapeutic.
No, I don’t think so either but I don’t think they would ever go out if they weren’t encouraged. I have thought about hiring someone I trust to do things with my son. Finding the right person is the hard part. When I volunteer to help a neighbor, I like to take him along. I think he benefits from getting out and the good feeling of being useful.