Family and Caregiver Schizophrenia Discussion Forum

Son with possible schizophrenia

My son right now is in a denial face and doesn’t think he has a mental health problem nor does he thinks the medication is good for him.

He thinks it is a spiritual battle that he has to go through… Like a training for a mission. He used to talk about it what was happening to him…when he was in the phycosis state, but we went through a lot to get him to say what was going on. He was getting messages through numbers, video games and the TV. Everything he saw or heard was specifically for him.

His phychiatrist said that the flat look, stare, non communication are the negative side of his condition. I am trying to find out what I can do to get him to speak of what is going through his mind. But when ever I try to speak to him… he zones out and becomes almost catatonic. But he comes out very quickly once he is left alone.

I am trying to get the perspective of someone who has this condition and can provide me with some insight of what could be going through his mind. My son doesn’t seemed concern or seem to know the severity of his mental health and how important is for him to communicate.

He is taking Seroquel 300mg, but was taking 400. It was lowered for concerns of involuntary body movements. He claims he doesn’t hear voices anymore, but his behaviors says different. I believe he is hiding what really is going on and pretend everything is getting better to get off the medication. If he stop taking Seroquel… He can’t sleep and his awkward behaviors increases.

When he took 400mg of Seroquel it took him 3 to 4 hours to fall asleep. I read online of people taking about that amount and said they would fall asleep quickly. Everytime I tried to ask him about what he is thinking or why is he staring at nothing… He gets almost in like a catatonic state. I don’t know how to communicate with him. Any help would be appreciated.

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First, welcome to we 1%’s. We are all struggling to comprehend the different parts of the same elephant. Often the elephant is attempting to trample us while we try to understand that “oh, this is the tusk… sticking through my torso.” :stuck_out_tongue_winking_eye:

But you are NOT alone. My 19 year old son was diagnosed a few months ago w SZ. A year ago he was heading back to finish his freshman year at college. He wasn’t an easy kid but he’d battled through and was going to school.

And then the dramatic change in delusions. I believe YouTube video algorithms contributed to his decline. He would watch pure poison. And see numbers and special connections that no one else could. Claimed to have special prophetic powers. Predicted Covid. Epstein. Forced vaccinations. Etc.

And throughout those minor episodes would always see numbers and had to look up their meaning. On the highways, addresses, TV, whatever. Saw foreboding numbers warning him of another disaster or suffering.

He had a major break in September and has been either hospitalized or in treatment facility since. The right drug combination is key. Compliance is critical. We believe he will struggle to stay engaged with his treatment plan. We are steeling ourselves for a long, hard road.

This forum, and NAMI have given me hope. I’m not alone. Others have the same front row tickets to the Shit Show. And we learn a lot about ourselves through the movie. Are we going to stay and watch? Get up and leave? Complain to the theater manager? Get in a fight with a fellow movie watcher?

Or, as I like to envision, clasp each other arm in arm, and demonstrate unconditional love to our loved one. And to each other as caregivers. I have to choose love. Hang in there!!

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Also, watch this: https://www.youtube.com/watch?v=KcZ_F1eua-I

I believe it does a good job at giving we non-affected a sense of what it’s like to have these issues.

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In this long journey you have to take the wins you can and adjust your expectations. That your son is on meds is a big win. Try to keep him there. Read Xavier Amador I am not sick, it could be of help Stay strong. P.S. My son fixation is with languages. He accumulates books and books of languages and claim to read them all and know to speak those languages. He is homeless.

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This is an excellent thread to start learning about schizophrenia and is a good introduction to Dr Amador as he explains that our family members are not in denial. One of the common symptoms of schizophrenia is not understanding they are ill. You can tell them they are sick over and over, but they are unable to understand. Someone once explained it as “they are too sick to realize they are sick”.

My 21 year old started to show psychotic symptoms in March of this year. He started to have this urge to genuinely seek God. We are a Christian family and at first it was a good thing. He was doing some fasting, reading the bible and praying. It was all normal until he started getting obsess and it became more like an obsession and he couldn’t do anything else, but that. We then started to ask him what was going on and he was saying God was speaking to him and was communicating with him through numbers. He started seeking the meaning to the numbers and eventually got reveleaed that he was one of the 144,000 chosen ones that its mentioned in the book Revelation.

After months on speaking to him, he eventually went away from the numbers and to the realization that what he was seeing and was not true. But once he got away from that, then he started to hear voices in his mind (not audible). Then from one voice it changed to two and then too many more. He even mentioned that one of the voices was a woman and that he had an intimate relation with her.

The list goes on and on. Eventually one day I woke up and notice he was having conversation in his mind and laughing by himself. This happened after 3 days of no sleep at all. We took him to his primary care where he confess to have had thought of hurting himself, my family and even the dog. That when the doctor said to take him to the ER. In the ER he was there for almost 7 days and came out more stable. We had to take precautions before he was released and I put a camera in his room and we locked all the knifes, scissors and put the gun in a new more secure safe. We had to put new door knobs with key for my room and my daughters room. We also bought a wall safe to put all the car keys, door keys and safe keys.

He wasn’t happy with the changes, but understood why we did. He is now seeing a psychiatrist, therapist and someone who helps him to manage his daily life. The main problem we are having now is that he has stopped completely talking about what he is thinking and why he does what he does. He will talk about anything else, but as soon as you ask about his mental state he goes flat, quiet… like in a catatonic state. From hearing from experts in the field… 1 in 100 people have schizophrenia. Its not that rare and many do have a functioning life. But the difference is one that decides to speak about his condition and decided to take the medication and the other who denies his condition and believes he is well.

Its sometimes sad, because he consumes most of our time and we also have a daughter and a marriage to work on. The most difficult part is feeling impotent in helping him. I appreciate everyone who has replied here. The other difficult part is watching people look at him weird, but I completely understand where they are coming from, but it does hurt. Its normal for someone to look with concern when a not normal behavior is being express. It is our way as humans to know that something is wrong. I don’t think people do it with ill intent, but more of concern or wonder of whats it is happening.

Likewise, we are Christians and my son took a similar path of reading heavily and then enhancing scripture with him as a chosen one. He was convinced he needed to be in Lisbon, Portugal for a special chosen selection of people who would stay alive in a safe commune, and after the time of persecution ended, would come back to save the world.

Unfortunately, he stopped taking his meds as part of this decision which then caused him to crater, and believes that now God hates him and will punish him for blasphemy.

He’ll cite scriptures that are taken out of context to support his fear of God. He’s legitimately terrified that he’s going to be tortured - persecuted by God - and die from the experience. To suggest otherwise to him is us ‘not believing the Bible’. Disagreements led to violent, scary outbursts.

We know God hates this mental disorder. He hates all sickness and pain. And we’d sure appreciate it if God would reach through this cruel demonic fog, and remind our son of His love. Perfect love drives out fear. We remain hopeful.

After a major episode 90 days ago, my son had to be hospitalized and is currently on meds and in a residential treatment center in Utah. He does NOT believe he is sick. No ability to properly balance reality with his prophetic thoughts. Or accept his previous outbursts. But he’s willing to stay compliant as he knows his alternative is to live on the street. A very hard line we prayed long and hard about setting.

Currently praying for God to show him true love. To remove the fear. To expose the confusion and lies.

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Just had a conversation with my son. We had to take his credit card away, because he has been compulsive buying and was just about to make donation somewhere. It was basically a one sided conversation, because he doesn’t want to talk to me.

He just freezes up when I talk to him, but when his mother shows up, he miraculously awakens. I know he is ill, but he knows and is very aware of what he is doing. I can’t tolerate his disrespect willingly and aware. If he can make choices to eat, places to go, things he likes… The least he can do is speak when he is spoken to and respect me. Ignoring me when I am speaking is a choice he makes. He still has his GOD free given will, but decides to make the wrong ones.

My wife doesn’t like me being stern with him, but I cannot allow him to manipulate and be disrespecful to me. He may not like what I have to say, but the least he can do is, show me respect. I have empathy for his situation, I love him and I would trade places with him if I could… But I will not enable or allow him to behave anyway he likes.

My wife wants to treat him like he totally gone and doesn’t know what he is doing or aware. He is mentally ill, but not mentally gone.

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I wonder, is he is responding more positively to his mom because of how she is conversing with him?

If they have the symptom anosognosia, conversations can cause more problems than they solve.

In Family to Family they told us that usually when parents differ, it’s because they are on different levels of understanding the situation themselves.

My teacher said that respect had to be mutual and we had to keep in mind the limitations in place because of the mental illness.

For my husband and I, it was tricky to figure out our son’s limitations initially. This is an illness that cycles, things my son can do one day, he can’t do the next.

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Totally relate. My biggest concern through his growing up was what I perceived as a lack of respect. For our home. His stuff. Our rules. For me specifically. Conflict between my wife and I went like this:

Me: “you’re molly-coddling our son!”

Wife: “I hate that word. And no I’m not. I’m just trying to keep the peace.”

Me: “Yeah but avoiding conflict seems to be enabling our son to behave even worse.”

Wife: “maybe. But I can’t take another outburst. I just need peace.”

Sooo, I get your perspective. And I get my wife’s perspective too. It’s an impossible situation and you just have to keep loving each other!!!

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I would agree that he talks to his mother more, because he has been closer to her like they say a Mama’s boy. But that is also, because she doesn’t ask him questions that can help us help him. She just has everyday regular conversations. What do you want to eat? Do you want to go to the store? Did you enjoy this?

He closes me out, because I am asking the question regarding how he is feeling, what is he thinking and why he is doing something. I also do ask the other questions she asks, but I also ask question that I need to see he mental state. When he was making movements, I would ask to see if he was aware of his movements or if it was the medication. These medications can have very dangerous side effects and I ask because its my responsibility. If he likes the question or not, its the least of my worries.

I do agree that parents may have different understanding of the situation and that’s why we have conversations to be in the same page. I also agree respect is mutual and that trust needs to be earned. I can recognize limitations and also being different from day to day. But I can also understand when its a choice they are making when they can switch instantly in the way they communicate with another person.

A mentally ill person like Schizophrenia causes them to hear voice and have delusion. Hallucinations do also happen and also their sense can experience things that are not real (Like tasting, feeling things in their skin etc…), but those are very rare. The common symptoms of schizophrenia are mainly hearing voices in the mind or audibly and delusions. If a schizophrenia person hears a voice of someone cursing at him or a threat… He has a choice to act on that voice or not. My argument here is that most people with this condition have a responsibility for the choices they make. If I hear someone screaming at me at the store and I am not sure if its in my mind or not… I still have to make a choice, Do I fight this person? Do I argue with him? Do I hurt him? Do I ignore him? These are choices.

What I am trying to get across is that they are mentally ill and not mentally gone. The way they see or hear things or believe things can be distorted, but the choice is there. His psychiatrist said to me that she has a patients and other who have a somewhat of a normal life… Even one of her patience graduated from the University and is now working as a Social Worker. She said it’s all up to the patient to admit they have a problem, to open up and speak about it, take their medication and continue treatment. She also said… if they make the wrong choices of not speaking, locking their self out of communicating or not talking about their mental state and not socializing… it will take them deeper into their illness. So from what the psychiatrist information… it all comes down to choices.

I can tell you and my wife agrees… that the reason he is getting treatment and is in a better mental state now is because, I recognized and drilled on him hard to find out what he was thinking and made the very hard decision to take him to a behavioral health facility to get him out of his psychosis, before it would have been too late. I know we have to be sensitive to their illness and not take their actions personal. But I also believe we cannot be soft and compliant in enabling their mental health. That also applies to any sickness. I rather have someone fight for me and tell me things I may not like to hear… than have someone pity me and be complaint to all my demands. I also believe people with schizophrenia can also be manipulative and I have seen it.

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All true. Discerning the illness vs manipulation has been a constant battle for me. In the end, after 10 years, multiple behavioral issues, inpatient visits, cops at the house, and now 4 independent psych consult confirmations, coupled with my growing acceptance of this illness, I’ve accepted the reality.

How each of us deals with this new ‘woke’ reality is highly personal. For me, I’m just mostly sad and heartbroken. Relieved by a good bottle of wine, or a positive report. Dribbled in just small enough quantities to subsist…

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My wife and I were reading the example conversion you had with your wife and we were laughing. It was like we were reading word for word what we talk about… lol

You have been dealing with these longer than I. Its time consuming and I have to learn to manage the time and not get consumed by his illness. Someone has keep everything functioning.

Our son is only 19, and his first major break was just in September but included him harming himself in an attempt to meet spiritual delusions.

But. Since he was a toddler, he’s been very unique. Scared of buttons on clothes. Couldn’t touch anything metal because he swore he could immediately taste it. Peserverated by making not just one paper airplane but making hundreds. Very addictive behavior patterns repeated in different ways.

Trouble at school. Decided to home school from 10-12th. My wife is a saint for dealing with that hell.

Then, surprised us (especially me) by going to college and finishing his freshman semester. Not easy but he passed a few courses. Very proud.

Then January of this year (12 months ago) and the delusions, violence, bizarre beliefs overwhelmed him and us. Took him to the mountains to get him away from rest of family for a few months.

He decided to stop taking all meds during that time. Found him a solitary, off-grid cabin in the mountains and he moved there in July. The place had to be at least 10 miles away from any 5G towers; with good soil for his greenhouse; and no neighbors within 2 miles. Thought we’d find him a place of solitude.

But 3 months later, major break that landed him in the ER. Since then, hospital for surgery to repair wound, then stabilization until current RTC. He’s been there 45 days.

The amount of time, money, energy spent on our son is incalculable. And we’ve got an 18 and 13 year old too!! It’s a miracle that I’ve married an angel and been blessed with good employment. And evidently a super-strong liver… :face_with_hand_over_mouth:

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Dear Idanny76, my son also has a somewhat better relationship with me than with my husband, his father. No easy answer. It is exactly how you describe it. I only can say that it is important that your son see that you and wife have a common front. Your wife should reinforce your concerns, like bringing up the issues you bring up with him if even in a different tone and that disrespect is not acceptable. Make sure you both are in the same page although you may use different ways to communicate with him.

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Trust me some people are mentally gone with this illness. It isn’t as easy as you make it out to be with a rational choice. When your mind is battling hallucinations and delusions everyday, every choice becomes a great battle. I would encourage you to keep an open mind and the struggles your son faces. Continue to guide him and ensure he takes his medications every day. As a man, you might understand that it is harder for males to open up with their feelings. Give it time and things will get better.

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My apologies for my delay in responding, our grandson was here all day, his energy keeps both of us busy.

I’m glad his mom is having every day conversations with him, those moments are really nice.

Personally, I worry when people believe that their family members are “in denial” - we have a lot of young people kicked to the streets because uniformed medical professionals have told their parents the sufferer is in denial when they actually have the symptom anosognosia. We have had people on this forum that have had to take medical literature to their mental health professionals to educate them about anosognosia. My Family to Family teacher taught us to be cautious of the sources we believed and she included psychiatrists - there’s supposed to be some old saying that its easier to teach people falsely the first time than it is to reteach them the truth later. My husband says its also called “first learned- best learned”, your learning processes in your brain actually want to cling to that first “lesson”.

I really hope your son doesn’t have anosognosia, this particular symptom makes our work as parents much more challenging. The closing out of you worries me a bit, what is going on when he closes you out can be more complicated than him not liking the question.

In my experience, this is a tricky area. I have heard lots of people say that they know their family members are choosing behaviors. In my personal experience with my son, there are times when his psychosis can be suppressed for short periods of time, its hard work and we are told its exhausting. There are also times when he is utterly lost in a psychotic episode and has no control over his actions. During these intense departures from reality - there’s no “choosing” going on. I believe that “departure from reality” means just what is says.

The voices and sounds our family members hear register on their brain waves exactly the same as the voices of actual people and actual sounds in the real world.

I think you should ask this psychiatrist if she also believes our family members caused their mental illness - is this the same doctor that told you your son is in the “denial phase”? There are three phases, prodromal, active and residual. Yes, our family members do need to work their recoveries -meds won’t do it all- her strong feelings that our mentally ill family members are choosing their way deeper into schizophrenia, is that really what she meant? I don’t mean to say that denial is impossible, its just that if its anosognosia its not a phase, its a symptom.

I believe we cannot be soft and compliant with ourselves, we have to demand that we question for ourselves everything we are told and cross confirm the information with multiple resources. Dr E Fuller Torrey’s book “Surviving Schizophrenia” should be your starting point - if you haven’t read it already.

Yes! Family to Family teaches that we must maintain our own lives and not let them be consumed by this illness. Its easy to get caught up and its so important to keep your life, marriage and your family life going. I think of it as containing the damage. Grief has to be managed as well, grief is the number one struggle for parents. Its okay to feel grief and its okay to lean into it, then I believe its best to pick up and go do something else.

Have you had this experience with a family member? My son had a grandmother with schizophrenia and the grandmother had a sister with it, and their sister who didn’t have it, had a son with it. Its clearly genetically present in my husband’s family. I have a brother diagnosed with bipolar, a sister who we all need to have diagnosed :laughing: and a dad with bipolar. I was disappointed when it turned out that bipolar, scz and autism are genetically related. I have noticed amongst family members and people on the forum that a sibling with a mental illness causes a lot of belief that behaviors are chosen deliberately.

I hope I haven’t offended you with my directness - you do seem like a direct talking sort of person yourself. Best to you and yours.

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My impression is you and your psychiatrist are treating the situation similarly to interrogating a suspect or informant who will provide you information and break down and “confess” to help you “crack the case”. You may disagree with this assessment, but for the sake of argument, let’s explore this.

First, I think the premise is flawed. In one breath you say he isn’t thinking clearly, and then you are expecting him to articulate what’s going on with him and “accept” his illness. But how’s he supposed to develop this insight and change in behavior when he isn’t thinking clearly? Don’t you see this is a version of the classic Catch 22? In the book/movie, airmen were crazy to fly dangerous missions, but could request to get out of flying by admitting they were crazy to fly the missions. But it was rational to think that flying dangerous missions was crazy, so they were declared sane and forced to fly even more missions. In your case, you want your son to start thinking more clearly, if only he’d think more clearly, open up to you and “accept” his illness. Presumably you and your psychiatrist are hoping that drugs will do that work for you, but it seems they aren’t. Now what? New drugs? Wait a bit longer? Blame your son? Blame yourself? (that’s you talking, not his psychiatrist-- they, like military leadership, are all perfect or at least won’t admit fault)

Second, your psychiatrist is correct. Some people with SZ recover and find a spectrum of improvement to their lives. These may be: independent living, marriage, scholastic achievement, employment etc. I’m one of them. In my case three-out-of-four wasn’t bad. I’ve had an upper middle class professional science and technology career and own my own home. However, did this success come from opening up and expressing my thoughts and feelings about my illness to my father? [excuse my emphatic swearing] HELL NO! Quite frankly, that’s why your son has a therapist and occupational therapist (that’s what you call someone who helps manage daily life). Why take on this job when your son doesn’t respond well to you and you lack training on how to do it properly?

There could be a myriad of reasons why he doesn’t respond to you. He could be embarrassed that’s he’s not living up to your expectations, and to admit or display weakness would cause him to further “lose face”. He may be afraid of consequences of opening up to you that you may use that information against him in some way emotionally or to abridge his agency. Or you may express too much emotion in you interactions with him, normally, or out of frustration driven by his reticence. Studies link excessive expressed emotion at home to a poor prognosis-- your son may sense this and is shutting down to protect himself. Or his behavior could be tied-into some false delusion and he may be shutting down to protect himself, others, or even you from “the conspiracy”. Sometimes you just feel uncomfortable with certain people in certain roles and they feed into your delusional system or their “vibes” just aren’t right. I’ve had this happen in work situations, and once I got out that headspace or situation I’m fine with the person, but while “in it” I avoided them at all costs.

Third, I think good caregiving boils down to people filling or stepping into roles-- each according to their abilities. And a family member’s perception or preference of fitness for the role is important too. In my case, my mother settled into the primary caregiver role. I spoke to her the most about my day-to-day life and frustrations the most, yet she was also the emotional “heavy” and demanded I find a job and start paying rent. She helped me find a therapist and help navigate healthcare. My father helped me find a job, helped me with school work and navigating interpersonal and technical aspects of my work environment. He also served as the “bank”, helped me fix up an old car to drive, supported me continued therapy and later psychiatric treatment, and staying in school and employed.

These roles largely mirrored and expanded on roles established while they were raising me, and fell into stereotypical gender roles. Conflict ensued when my parents or I fell out of our lanes (established roles). For example, I particularly resented paying rent to my mother, since she didn’t have the role of “the bank”. She wasn’t working at the time, and had contributed little to the mortgage and utilities that I could see, and over the years had developed a notion of “her money” when she started working. But it did fit the role of her being “the heavy”, or to use a less kind and gender-loaded term-- the bitch.

So, if you aren’t seeing results or respect for your efforts from your son, consider your family history: are you swimming outside of your lane? When I hear terms like “mama’s boy” and “molly coddling” from you and @Sando, I question whether the male gender might be at a distinct societal disadvantage for primary caregiving of the SMI. As a male who has SZA and has never been a parent, I’ll be a traitor to my gender and say this is one disease you can’t boot-camp your way out of, and a directed, action-oriented, search-and-destroy, take-no-prisoners approach is doomed to failure. Even if you “aren’t that guy”, be aware you may be perceived as such regardless. I’ve exclusively had male psychiatrists and female therapists for a reason: I take prescriptive medical advice better from males; and share my thoughts and feelings better with females. I’ve worked within consulting and support in technical areas, and invariably team members report you can give the exact same advice to a client and the help will be received differently depending on who gives it. Bedside manner matters, and you soon learn it’s nothing personal-- people are quirky and the SMI are even more so.

Finally, let’s look at LEAP through the lens of gender norms. LEAP, if you don’t know by now, is an acronym for Listen Empathise Agree Plan. It’s an approach used by an increasing number of caregivers to improve their relationship with the SMI in their care, and guide them toward treatment in the face of anasognosia (lack of insight into disease). Let’s break this down from a gender normative perspective. Listening? There are probably dozens and dozens of stand-up routines by women about men being bad listeners when they express thoughts and feelings. So men appear to be at a disadvantage. Empathizing? another weak spot stereotypically of males. Agreeing? Getting warmer, but women are viewed more as negotiators and men more as fighters for their point of view within a consensus. Planning? Here’s where men may have a perceived upper hand or equality, although I submit planning is more of an individual skill than a gender norm. We often say “the man with the plan”, yet coming up with a plan can either be a collaborative female-oriented skill, or visionary male-oriented skill. The male approach is often associated with executing plans, rather than collaborating and negotiating what those plans are, however. All this said, gender norms are changing, no one strictly adheres to a norm, and there are hybrid males, and I think I might be in that category, whose strengths bridge stereotypical norms. LEAP is an inherently talky approach, that relies on establishing trust and acceptance, and there are gender differences in numbers of words spoken in certain contexts that are less than widely believed stereotypes, but my experience with my father is I can count on one hand times we spoke of our feelings, many more about how I thought, and maybe a couple dozen times we spoke about delusional content or symptoms.

A pitfall for people practicing LEAP is they often mistake projecting their own desired outcomes or reality onto subjects for “putting themselves in their place”. This may or may not be gender specific, but I see it in this quote:

Well… yes. He’s likely not concerned and doesn’t know the severity of his mental health status, because in his mind he’s perfectly fine. You are the one who is concerned about his mental health-- not him. Even more telling is you are the one wanting him to communicate, not him. He’s not going to be motivated to talk to you for many reasons: he doesn’t believe he’s sick, he doesn’t believe communicating will help the situation or “cure” a sickness he doesn’t even believe he has, he doesn’t feel comfortable talking to you regardless and various other hypothetical reasons I gave you above.

Still I think LEAP is your best bet for your son, and I think you’ve done a good job of assembling a recovery team and getting and keeping him compliant on medication. You may need to adjust his medication, trust the process and your other team members more, have patience and see if you and the rest of the team can work to their strengths. I’ll end this “talky” post with a link to the one video I think is the best introduction to LEAP. My apologies if you’ve seen it, but I think it’s definitive for the subject. It can be difficult to change your mindset and understand the method, especially when you have a doctor who talks about nonexistent denial phases and other contrarian notions. An important realization is most people who go through this process never gain insight into their illnesses, but the method can still improve their lives regardless.

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Thanks for such a detailed and heartfelt response. Some very helpful info herein.

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Thank you, Maggotbrane! One of the important things you pointed out is communication - or lack thereof - by the person with SZ, in my case that would be my son. Often I try to initiate a conversation only to be told to “be quiet” and I realize that he already has a gazillion things/voices spinning through his head and the last thing he needs is just another voice - even if I’m trying to help.

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