My son is 12 and it appears we are looking at a schizophrenia diagnosis.He has only been seeing his pdoc for 2 months.I have been trying to read/learn everything I can to help him.It has been very rough at times!He hasn’t been able to go to school+has a lot of negative symptoms.I’m guessing it would be helpful if he was able to discuss more about what he sees/ hears.He refuses to discuss anything and I wonder if his meds are helping as much as they could.Any suggestions?
When I was diagnosed, my mother would ask me about the things I saw and heard. She wanted to help me so desperately, but I dared not tell her. I would have delusions that my family was trying to do away with me or control me. My mother would scare me and I would voices telling me to kill her. It was a terrible thing. I love my mother dearly, but I didn’t tell her anything because I know it would hurt her.
Schizophrenia is a very isolating and terrible thing to deal with. You see and hear some rather scary things and the whole experience makes it harder to relate to other people. If I told anyone other than my therapist these things, then I’d surely be worse off. Your son might be experiencing some rather vivid delusions or hallucinations of a different nature and may feel that you wouldn’t understand.
All I can suggest is just to help him keep up with his medication and reassure him of the reality that he’s in and that you love him. Also sorry to get all heavy right there. Kinda hits close to home.
Even before the sz started I had depression and I never talked to my Mom about how I wanted to hurt myself because I thought she would get mad and think that I didn’t love her.
Djinn is right. Just be there.
I would like to add that after time passes he might feel more comefortable sharing. If you make a big fuss or think that he feel or has these hallusination or delusions to be mean don’t show it. I tried to tell my Mom about my delusion that no one loved me. She blew up and I have never felt comfortable telling her much even after 15 years.
When I was about 9 to 11 years old and my head circus acted up with voices and hallucinations it was really confusing, upsetting, painful, terrifying… I didn’t “hide” what was going on from my parents… I just really had no way of explaining it.
I didn’t have the vocabulary of how to adequately explain what was happening to me. Plus it was really traumatizing. I wasn’t able to talk about it the same way one might talk about a broken foot or a large bruise.
When I was able to try and explain what was going on, I didn’t make sense and my parents didn’t understand what I was saying and I was frustrated that they didn’t understand. They were frustrated that I didn’t know who to explain it in terms they could understand. My Mom got us into family therapy so there was a third party who acted as an interpreter between us.
She could take what I was saying and put it in terms that my parents understood.
T## Tha ##TThank you all for replying! My son did tell me once that no horror movie would ever scare him because of the things he sees.I am very thankful for this forum as it is difficult to get support where we live.There is a serious shortage of child pdocs and few people know anything about schizophrenia.Thank you for helping me get some insight into what may be going on in his head.
I just wanted to say welcome to the forum. I do HOPE you read some of the other sections too. People have said they have gotten a lot of ideas by reading the Diagnosed and the Medication section because it answered some questions for them.
It’s going to be hard but not impossible. He’s young and with quick action he as a good chance of getting a handle on this. My parents tried their very best, but resources were just starting to get better and I didn’t figure myself out until I was… well, just now really at nearly 30. But there are guys in my SZ group who are still struggling at 50 so I’m very grateful for my parent’s quick action.
If you haven’t seen it
www.schizophrenia.com has just resources up the arm and FAQ and all sorts of knowledge
You yourself are going to need help and my parents went to a support group and that is where they found many hidden resources and learned the DSHS maze that got me visiting nurses, and day hospitals, and vocational training, rehab…
Will help you find a lot of stuff. The biggest thing it will help you find is other people who are in your boat… It may feel this way for you… the caregiver… but you are not alone.
Welcome to the forum btrfly36.
My son can be pretty open about what he believes and sometimes about what he sees. I think using LEAP helped with that and also convincing him that his different beliefs and even hearing voices alone will not get him admitted to hospital. There can be a big fear of this or being judged or thought to be crazy. There have been times when my son’s paranoia was playing it’s part and he would say “I can’t tell you as you will just have me locked up.” Over time he seems to have learned to trust some things and has even admitted to nurses that voices are still there as background music/noise.
Some of these sites may help:
http://www.leapinstitute.org/ - under resources are free videos on using LEAP
LEAP is a way of communicating to build trust. Listen-Empathize-Agree-Partner.
http://dramador.com/ - Dr. Xavier Amador is a clinical psychologist whose brother had schizophrenia. He is the founder of the LEAP Institute. Wrote the book: I’m Not Sick I Don’t Need Help! Can buy from his website.
Search Xavier Amador and LEAP on youtube.com and you should find some long videos
Treatment Advocacy Center - under problems you will see anosognosia
Anosognosia looks like denial but is different.
Bayes for Schizophrenics: Reasoning in Delusional Disorders - LessWrong - helped my understand delusions
Early Psychosis Treatment center information in these two links
http://www.raiseetp.org/sites/
Psychiatric Treatment Centers affiliated with Medical Schools in the USA
This link may help you find a psychiatrist in your area
I think getting your son into an early intervention program may help.
This is a great forum and site. Come anytime!
When I was acutely ill I didn’t tell anyone about what I saw because I thought it would put them in danger knowing what I knew, my voices are awful, horrid beings and I still get reluctant to talk about what they say now, they used to threaten my mum, they don’t anymore. I also saw visions that were like something out of dante’s inferno, people dying, creatures, spies and many things that I still don’t talk about but I paint or draw and it helps to get it out.
My mum used to be desperate for me to talk but at the time I just couldn’t communicate she suggested I write or draw to her and to draw to get it out, it’s heavy burden seeing and hearing things other people can’t because you feel they may judge you, but when it came to my parents I was fearful they’d be killed if they knew. Your son my be trying to protect you, he may be fearful of you (paranoia) or just simply fearful for you.
Maybe encourage him to get it out, my mum got me a lockable blank journal that I could use so it would be between me and the pages I would get it out in there, and if I wanted to share I could. When it was down on paper I felt relief, it was a release of the horrors I saw and heard, this is merely a suggestion, it doesn’t have to be a lockable journal because I know they’re hard to come by but just a journal that you leave up to him whether he shares it whether it be his doctor or you. It’s better out than in.
But it sounds like he needs the help you’re getting him, I’m sorry you’re going through this and welcome to the forum! If you have any questions just ask on here and I’m sure you’ll get many responses I was welcomed warmly to this forum and it’s helped a lot, I hope it will do the same for you.
Take care,
Meg.
I used to journal almost compulsively because one I wrote it down, it was out of my head, it was somewhere else and I could breathe easy and think of something else. I have years and years of journals. Getting it down on paper did help me a lot.
What a wonderful idea!My son is actually a good writer and he may well like this approach.I have been overwhelmed by the lack of services to help him.The closest university hospital is 3hrs away+he has to be 14 to participate.His therapist is great,but has no experience with sz(but wants to learn).We do have a great pdoc.Unfortunately,my son has juv.diabetes+finding someplace he could go in an emergency that could handle mental/physical issues is not possible where we live.Several months ago,he was inpatient for 4 days.They came very close to killing him because he was medically unstable the whole time.Let’s just say neither one of us want to go down that road again!I am using this angle(LEAP) in hopes that him+I can work together to keep him stable.Needless to say,it didn’t take long for me to figure out that no calvary was coming to the rescue!I appreciate all the support+advice!!!Sometimes we have to be our own calvary : )
I don’t know whether it is normal or not. But, my Mom who is a schizophrenic is uncomfortable discussing hallucinations even with her psychaitrist.
I live with my older brother who is Sz. We are close and I value him as a friend not just an older brother. He doesn’t even tell ME about some of his hallucinations.
There are maybe three or four reoccurring ones that he might mention to me. The rest he doesn’t tell me about. I think he’s embarrassed and sometimes ashamed of the content.
Also, it’s traumatic for him when he has a break. It’s hard for him to talk about and relive again. He gets scared again.
Thanks kidsister! It seems like you have a great relationship with your brother.My son is doing better with Seroquel+Abilify but it varies day-to-day.He is really fighting to get some of his life back.Things overwhelm him easily.We are going to homeschool next year because on bad days it is impossible for him to think.The door to school will be open if he is able but I’m quickly learning that I need to be very flexible+ think outside the box to assist him.I took the suggestion of journaling +explained to him how he could use it.I bought a black one(favorite color)
and just left it on his bed.Yesterday,I was so surprised to see him writing furiously in it while he was having a bad moment!It is horrible to think of someone being tortured by visions/voices- let alone a child.
I think @btrfly36 you could find a lockable journal online. I would let him help you choose it. My Aunt once gave me a beautiful journal to “write in” (I wasn’t diagnosed with anything at the time but I definitly had some auburgers indicators and depression if I wasn’t preschzophrenia already). It was meant for me to use as a writer. I could never use it for anything though. Mom tried to get me to use it as a diary/journal when I got sick, but because I didn’t pick it out I didn’t feel “attuned” to it or whatever. I hate throwing away gifts so I probably still have it. Personally I like diaries (they are probably harder to find for boys) with drawings already there on the inside. My first “successful” one was with a kitty on a moped on the front. The same kitty was on every page in the bottom right corner. I doodled how I was feeling. The words helped me remember the situation but the doodles helped me remember my emotions. I have never been an sketcher or good with creating my own images, but the included doodles (always the same kitty always on the same moped) gave me the scaffolding I needed to express myself through drawing.
@SurprisedJ, I think that a lock would be a really good thing, not just because as you said he can keep his thoughts hidden, it is also a symbol of trust. I think her son would feel safer confiding in the journal because he knows it can’t be opened without his knowledge. The lock can be broken, but that is something obvious. With all these people poking around in his head, seeming to want anything he ever thought about anything, just having a slice to himself could be comforting. What do you think?
During my son’s last break I ended up getting him numerous journals, notepads and pens. He wanted one for drawing, one for writing, one for notes. A pen for this book and a pen for that book. Later it was one for his poetry/raps. Sometimes he will show me what is in them. I want to see, as it gave me an idea of some of his thought processes and imaginings. Even his raps can give me an idea of what he is feeling/projecting. The dollar store and Walmart served me well in finding him different items.
Hey btrfly36…I hope things improve for you and your son. I just want to say, having read down through the posts in this thread I feel you may have received a bit of scaremongering and negativity. Schizophrenia is not something totally tragic. It is just an illness that people have to put up with, like many other illnesses out there. What Im trying to say is I feel you received a negative message in a lot of the posts in this thread. But schizophrenia is not all negative. I personally have schizophrenia that is spiritual. Yes I had difficulties at first with threatening voices but I got better and now I hear good angelic voices. People do have spirit guides. And schizophrenia can bring you closer to these. Angel guides are good and can help you.
Anyway I feel there was a lot of negativity in the posts but I just want to tell you that things are not all bad. I do know your son is 12 but schizophrenia is not as problematic in children as it is in adults.
Also, schizophrenia is something which has ups and downs. You can be good one day, poorly the next but it it does get better in time. You sound like a very caring parent. This will help a lot in recovery.
After a while I didn’t have locks on my journals. I’m always loosing keys. The boy is young and not in my situation so maybe a lock on a journal would be helpful for him to feel like he has a corner of his mind that is all for him and no one else. Plus if he is suffering any paranoia, having a lock might ease that.
Another thing that made me cut the locks off my journals lately was the fact that I don’t mean to, I’ve been in therapy for it, I’ve tried to do everything I could to stop it but I still turn over my sisters room and I’ve read all her journals and diaries. I’m not proud of this fact. So I opened mine up as way to say… if you read this, we’re even. But she doesn’t read them. In fact I gave them to her to read and she said she wasn’t ready to face what was in them.
Onceapoet-I will look into a journal that will lock.My son does use his new journal+ I have no idea where he keeps it.I try to respect my kids’ space(no poking around) unless I have reason to snoop(I haven’t).He would like the lock because he likes keys. : )