Other kids who lead normal lives


@mbheart Has your son every been on meds?


@DianeR yes, he has tried different ones, he is on the shots (Risperdal) now because he stopped taking it orally. He has very bad days, and he has some even-keeled days. Some days I feel like he is 2 years old all over again, the hardest thing to do was make him leave. I found an apartment for him very close to where I live, so I can see him and talk to him every day (if he allows me to). I miss my son!!! Where did he go??? :frowning: :frowning: :frowning:


@mbheart That’s how it was for me before my son got on Invega. It was like he was 8 or 10. It was so very strange and sad. The Invega has helped him and I see the old kid I had. Not sure how long he’ll be around as I know he will go off the Invega when the court order is lifted. Is your son willing to take the meds? I think independence is good. Congrats on getting him his own place.


@DianeR, how does that court order thing work? I don’t really understand it.
Is he a minor? Did they have to force him to take it? My son is 24 and if he chooses not to take any meds, he won’t. I did not know that courts could make someone take meds.

No, my son HATES ALL MEDS. It gives him awful, horrific side affects, like he gets really jittery, and he says he can’t sleep, and he feels nervous and anxious. I thought these meds were supposed to relax him, but it seems to have the opposite affect. He was on Haldol and OMG, the side affects were so awful, I could not bear to watch him on it. But it was either that or his delusions and psychosis, it’s like you have to choose the lesser of the 2 evils.

I just want him to find something that works for him, so far he seems to be doing ok on the Risperdal shots. But it’s like a time bomb waiting to go off, I’m scared and sad EVERY SINGLE DAY.


@mbheart Well the time bomb went off for us last spring. My son thought I was an imposter and barricaded me out of my home. I called the police. They wouldn’t break in even for a wellness check. They told me to get an emergency mental health hold which I did through the County Attorney (free - took 24 hours). The police then came and took him to the hospital then he went into a short term Behavioral Heath Unit. THEY (the doctor/nurses) were the ones who asked him to takes meds, he would not, there is some law that allowed them to give him meds but only every 24 hours (because he was totally paranoid and in psychosis). THEY were the ones who took him to court for the court ordered meds. It was a 2 hour hearing (the doctor vs my son and an appointed lawyer) in which my son refused to think he needed them. He will likely be on court ordered for a few more months at least. He is now working 2 jobs (50 hours a week) and normal enough to hold those jobs and talk to me a bit. I think there are other ways to get that but I am not sure how. I think you can get guardianship in some cases. My son is on the Invega shot. Which I had to lobby for. Have you thought about the homeopathy tablets. That has helped one other person here. For my son, I think he needed the big bang of the shot. Has your son been hospitalized before?


Hello mbheart and all, I was looking through a few post. I agree with all of you. Outsiders have no idea what we go through, especially on a daily basis.
Even though my situation is different than yours, when Lou was first in the accident and then the assualt, I went to my close friends for comfort. Then it became very awkward and now people avoid me. I wish I had not given out so much info about Lou.
When I watch the everyday drama that the people around me deal with, I have a hard time not rolling my eyes! They should embrace their normalcy, instead they fight and bicker over such petty things. I really have to pull myself out and walk away. Nobody understands, the daily sadness and how just a normal day would be wonderful!
Thank you for sharing and being here.
Shalom AnnieNorCal


A high school friend of our son’s has reached out wanting to talk to our son when the friend is back in town. Our son cannot communicate well due to Formal Thought Disorder so we are planning a short FaceTime call at which I will be present with our son to facilitate (he is not able to manage a phone at this time). Prior to the call, the friend and I will talk on the phone so I can explain this travesty to the friend, who basically has no real knowledge of what has happened since high school. I am thankful for a few friends who have wanted to stay in touch, however briefly, at this point. I hope it is meaningful to our son to know that other people care. However, I expect that it is hard to be in contact with other people who he knows are living normal lives that he cannot.


@DianeR, yes he has been in 3 times in the last 4 years. The 1st time he was in for 2 months. He just came home yesterday from the hospital after 3 weeks. It’s so scary, so many factors, will they stay on meds? Will they get violent? Will the meds work? He has reached a rebellious stage with me where he says he needs distance from me. It’s getting harder and harder to communicate with him, and he’s quickly slipping further and further away from me. I cannot help my son if he doesn’t want my help. All I want is for him to know I’m always here for him


@mbheart - Do you think he knows you are there for him? He must. My son doesn’t want much to do with me and we live together (for now). When I was his age I didn’t want to spend too much time with my mom either. All I can do is know that I’ve done everything I possibly can to help him out and that is what is starting to finally give me some peace. I believe you recently had his roof fixed? Is that right?


I do think that as our loved children become older, people in their generation gain more life experience, become more understanding, and develop empathy that makes them able to interact with our loved ones.

The people who enter their lives may not be the same friends they had in childhood, but I do see other age-peers who are interested in being at least kind, if not highly involved.


@DianeR, no that was not me. I never had his roof fixed.

Yes you are so right, knowing that I’ve done everything that I possibly can does give me some sense of peace. The things that just come naturally to good moms. And if I had to do it all over again and again, I would


I was told the same thing. Love them from a distance. I just couldnt give up and thank goodness I didnt. He finally hot on the right med for him, Clozapine, and his life turned around. He is back to normal and working full time. I am hsppy to say I didnt give up even though it was the toughest thing I ever did and I am the grandma, his parents gave up


@lindag and @Margi - Actually, now that you mention it. One of the first things one of the nurses on the Behavioral Health Unit told me not to give up on him (son).


I feel the same way every every day. Why my son, I am grieving for the son I lost and the man he could be. He is 20 now, will not take meds, will not go to he doctor’s. Been hospitalized twice and nothing has changed. This is so hard, he is so hard to live with. I can’t live with the guilt I feel and trying to deal with him.

I worry about his future, who will take care of him, he already lived on the streets for 6 months, what will happen next.


@Loretta54, I’m trying to stay positive, but it is so very, very hard. My son has tried different meds too, nothing really seems to do the “trick”. He also refuses to take meds.

Extremely difficult to live with, difficult to digest, my heart literally hurts every day. I worry about that too, what if something happens to me, will he be one of these old homeless men I see on the streets collecting food from a garbage can and talking to himself??? I can’t bear that image, so painful!

Another thing I just don’t want to hear anymore besides seeing things on social media, is when people tell me things will work out and to stay positive. At the risk of sounding cynical and ungrateful, I just don’t want to hear that anymore. I understand what people are trying to do, but to be honest, I’ve become such a realist and seeing things as how and what they are. I would much rather discuss the realness and the pain of this disease, does it make sense to say misery loves company? I can only focus on what’s in front of me, at this very moment, which is the love of my life, my son! I need to stay well mentally and physically too, but it’s so hard. I’m losing so much sleep, and then I get so sick.

I come here and I read everyone’s stories, and I don’t feel so alone, but still sad beyond belief that we are all going thru this hell


Lorretta my heart goes out to you. I know how your feeling. My son tells me that I am a terrible mother that only wants him to be fat and lye in bed. He’s unmedicated has his own place but there isn’t much left in it he threw out most everything said that all that stuff is not his. It’s all counterfit. People are breaking in and steeling everything he can’t keep money in the house it disappears and someone is taking all his money from his bank account. He on a disability. I pay the bills and have spent quite a bit just that the place is livable. His whole yard and side of the house is covered with garbage brand new things still in the box that I bought him. This is making me really sick don’t know how much more I will be able to handle. I have been with him af his place for 2 days I know I shouldn’t try and reason with him it just ends bad and in a argument. In the midle of the night he come to me and said that he needs a new toilet not to use that one anymore i should go outside I told him there’s nothing wrong with it. It’s just so hard to see your child like this and you can’t do anyrhing. Sorry for going on and on. There’s just no one I can talk to when people see that he’s not right they just stay away.


True. Although my experience was not just with my sz son, but also my grandson who had eczema from head to toe. Literally. My beautiful little grandbaby was hidden behind red and sometimes oozing sores. His case was referred to a large teaching hospital after being labeled the worse case in our large metro area by dermatologists. My friend’s beautiful grandson the same age was healthy. Her children who were doing well. And my son was sinking with his sz. I was jealous and very sad. So I grieved a bit what might have been and decided to learn to live my life. It is not normal, but I suspect behind closed doors no ones really is. And even if it is today, it may change tomorrow. Do I have hard days, yep. Today was one. But I no longer let other peoples successes reduce my joy.


Take heart, Loretta: 20 is very young, in terms of living w a chronic disease. Many sz was mprove with age. There may yet come a time when he will get on meds and/or get his symptoms under control.
I’ve seen it happen with my sz (ex) husband, and with his much older brother. The brother, also sz, had a hard road and was homeless at times. He eventually returned home to his elderly mother and lived peacefully with her iuntil he passed away from cancer.

My husband tried many meds, but never stuck with them. He heard voices, raged against the world, harassed neighbors who he thought were threatening him. He’s doing much better now, is on some meds, and even works part time.


I am sad for the pain and loss we all feel. I agree that the statement from well-meaning others “Things will turn out alright.” Is one I despise. I know that it very well may not turn out good or even if it gets better, the process has been a nightmare. It has been exhausting at times. However, I am thankful to have strength through close family and friends, through faith, with help from NAMI and this Forum. Our son is living for now in a personal care home an hour away so while I visit him twice a week, it is not a constant face to face struggle for me, which helps. I don’t know how long we can keep this up but hope that illness will improve. I’m a believer in the LEAP approach for gaining medication compliance. Also, that giving son no option to live at home has resulted in his medication compliance for now. Hugs to all.


Happy cake day @thereisalwayshope.

Learning to live my own life again is a huge struggle. I keep thinking that if I just think about my son’s scz long enough, I will find a solution. Your family hits a chord with me as the rereading I was doing was a search for information for the family of the grandchild of my heart. His mom’s undiagnosed bipolar is worsening and the little one is paying a high price. Once again, we are in a situation that feels hopeless. The only good thing is that we know why the mom’s behaviors are what they are, so sad.