Hi all!! Not sure why it took me so long to find this group, In a nutshell I will give you a peek into my (our) journey. My beautiful boy Milo was what I called my “strange, but wonderful boy”, he is the middle of my 2 boys. Growing up he was very talented and smart, but I noticed he had anxiety, particularly when we traveled (many trips to Disney world, etc). I took him to a doctor at age 11 however the medication prescribed did nothing. As he evolved into the teen years he became more and more reclusive until eventually he refused to go outside and also attend his last month of high school. Here in Ontario Canada to admit a “patient” who is showing signs of mental health issues you either have to call the police or admit them to an emergency room, I of course didi the latter. Milo was 18 the day he was admitted and spent the next 2 years in a psychiatric hospital, to which I visited almost daily. Milo now resides in a group home close to our home and visits often. There is so much more to tell, but quite simply he suffers from delusional thoughts. He had a part time job in a kitchen when he was 17 and believes he poisoned and killed many guests by using a dirty cutting board, he also believes that he is going to jail for a crime he did not commit, he believes that some guys from high school stole his DNA and are still to this day going to use it to have him incarcerated. He also believes that there are hidden cameras in our home. 3 years in this “system” and I am completely frustrated, he has not been offered any therapy and is once again due to be relocated, this time to a home 30 miles from our home, this home is dreadful, and Have been fighting for another home but apparently there are none others “available”. I look forward to chatting with you, especially about medications as I believe after 3 years and no obvious changes in Milo he is being swept under the carpet. Best, Jade
Welcome you will find this site full of knowledge and experiences, it’s a wealth of knowledge - is your son medicated, was he diagnosed and can he live with you and your wife. I would suggest reading the many stories you can search many topics. I wish you and your son the best, read lots. Sending you well wishes
Thanks for the reply! We would LOVE Milo to live at home, we actually renovated his bedroom to twice the size and installed a video game/media centre for him, we also tried a security system and he sadly does not feel safe here. He was staying for sleep-overs but 7 weeks ago he had an anxiety attack here and not visited since, we talk on messenger everyday though… I am so sad because we were used to having him here 3 times per week for dinner and hockey games. 
If he is still with psychosis after 3 yrs it is obvious that he is not following treatment or the one he has is not working. Can he sign papers so that you have access to his med records and advocate for him?. In this type of treatment there is alway trial and error and maybe a different med would work for him. There are 3 good things in your story, and people like us with loved ones with a SMI often learn to celebrate the little wins, as this you have to take it day by day: he has a job, he has a stable place to live and he keeps contact with you. Find ways to build on those. Wishing you and your son the best.
I am so sorry for what’s happening to your son and family. Schizophrenia is like a giant bombshell. It sounds like your son is in board and care group homes. Is someone finding them for him? I used to have to do that until a couple of years ago when my son walked from his group home. He was hospitalized and classified as homeless. Now he has this agency called Telecare who finds him places to live, takes him to the doctor and counsels him on taking his meds. I never knew there was anything like this which is why I’m telling you. One medication that has always helped him is a monthly haldol shot. Hope everything goes well.
I am interested in this Telecare. What state are you in cuz’ when I looked it up for my state it only talks about help for the elderly. I’m in florida
Welcome to our little family @jade! No easy days but some are brighter than others. Very sorry for and empathetic with your journey.
Finding the right meds has been the only saving Grace we’ve experienced. Took a few years.
My son’s delusions are likewise heartbreaking and continue to stunt his progress. SZ has got to be one of the toughest illnesses for both patient and caregiver. Maybe Alzheimers is in the running. And I, like many of us, deal with aging parents who have AZ/dementia and also a child w SZ.
This group has helped me regain some perspective and peace. Welcome.
Welcome jade,
Our son can’t live with us either, it seems to spike his paranoia and delusions. We were reluctant as we felt we should keep him nearby to keep him “safe”. We finally came to realize it was not for the best for him, and now we accept it. He does much better living on his own.
A friend had a son with scz who lived with her very successfully. I always got the vibe from her that she thought we weren’t “doing it right”. Her other son developed bipolar and living with her sets his mania to storming. Now she really understands that all of us are not able to live with our neurodiverse family members. Her son with bipolar does much better in his own space as well.
Have they tried Clozapine on your son yet?
I concur with what several others have written. If he is still psychotic, the meds aren’t working. Clozapine has a bad rep in the U.S., but not so much in other countries, like perhaps Canada.
I like what @hopeisahead wrote about seeing if he will give you access to his medical records. Maybe you could review them with an independent psychiatrist.
I’m so glad you found us in this forum, I don’t remember how I found it either but you’re ‘home’ welcome!
My heart goes out to you. Our son is the oldest of five and his issues started also at about 12-13, took him to the psychologist and he went by until he was 17, he was isolated, not many friends, he used to be very smart in highschool but he started to slightly decline in his grades and last he didn’t even attend his graduation. At 19 he was diagnosed at the hospital with a squizoaffective disorder with manic-depressive features and was released; I can’t not even imagine what it’d be like to have your son admitted to the hospital and spend the next two years in there, it’s such a long time to have the doctors figured out the best course of meds for him, I know meds take a while to reach therapeutic levels. Our son has been many times at the hospital and even involuntarily committed about 3-4 times 5 & 6 months at at time because he’s very resistant to the meds. He’s 48 soon 49 years old. I have read that one of the miracle meds is clozapine Wich many doctors won’t prescribe because a blood draw often is required. As of now, after the ‘pandemic’ most places are short staffed and there’s a long waiting list to be seen by a doctor or if there’s a need for housing. I had our son about 8-10 years ago in one nursing home, the first time we visited him it was so depressing!!! On one visit home he didn’t want to go back and I didn’t blame him, there was issues with the caretakers there, I can see that sometimes is necessary to have our loved ones very drugged up but if we give up on them there’s no reason for them (caretakers in the nursing homes) to advocate for them.
Our son has been on many different meds: haldol, Zyprexa, Quetiapine, Risperidone and I don’t remember what others, lately it’s been Abilify but they have to be shots because he tends to not take the oral pills and I really don’t trust him to take them. His delusions are still there but it’s still bearable to live with him.
I’m about to be done with the Family to Family NAMI class for the 3rd time and I strongly recommend it to you, also the book I’m Not Sick I Don’t Need Help by Xavier Amador is one of my favorites. I’ve tried the steps in the book, sometimes my son still is not ready to listen so we have to exercise a lot of patience.
I really hope that you can find a great psychiatrist and a good therapist with whom he can connect because trust is very important. My son has had good psyquiatrists but he hasn’t trust no one as far as therapist. Time ago I read another book of a 16 year old girl who was in a mental institution and her delusions were somewhat similar to what you describe of your son’s, it’s called ‘I Never Promised You a Rose Garden’.
Hugs and prayers for you and your son.