There are some good Amador videos on youtube that help explain how his methodology was developed.
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This is such a hard issue to deal with. With my daughter, who also has moderate autism, I listen to her, and ask what I can do. I tell her she is safe and that I won’t allow anyone to hurt her. Sometimes it helps to give her a choice of simple, calming things to do, like listening to slow, rhythmic music, doing breathing exercises, or writing a positive affirmation repeatedly. The goal is to throw in a diversion that she may be able to hold onto and ignore the visual and auditory hallucinations.
Sometimes she can’t pull it together to do anything except pace. We are in a really good place right now, and I am so grateful. Good luck to you and your son. We are in a trail with tricky footing, so take care of yourself while caring for your son.
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When I found out my son was seeing things and hearing things that were not there, I said something like this" I know you are seeing and hearing things That I do not see, these things are real to you, but they are not real. Can you and I find a way for you to get help and I will go with you. " by acknowledging that the events were real to him it made him trust me and he got the help he needed, sonperhaps it will help your son also. Praying for you
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I have ordered the book I Don’t Need Help a few days ago and I can’t wait to read it. Thanks so much for the recommendation though!
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Also, not sure if I put this anywhere or not but so far and thankfully he does not have auditory or visual hallucinations as far as I know. It’s just paranoid delusions. I wrote out our story but alas it’s too long to fit in my profile. I’m trying to figure out how to make a link to the pdf. if that’s a possibility?
Another also, I am SOOOO Thankful to finding this website! I thank you all for your support and I hope some day to be able to do the same for someone else. Love to you all!
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Does he ever say that people are calling him names or saying things about him?
If you don’t mind my asking, how has it been for your situation w/out medication? My son refuses it, hides, everything possible and having him on/off again was so bad for him. He does seem to have “settled in” - likes to be outside and with his dog, on the internet a lot, plays guitar, the new normal. Can be very rude sometimes and then very sweet. Feel like we are always walking on eggshells, but I don’t know. I go back and forth.
I know of a friend’s son who took medication and with supreme family support (he is one of 5 siblings) earned at 2 year degree….so it can be good.
My son took medication for a few years thinking it would help him – Haldol monthly shot, later risperadol (sp?) and others and each one had severe side effects. He gained a lot of weight, his facial appearance changed such that his face became “rounded” (I’ve seen this in others, too). The worst part was the way the meds made him feel – like a zombie, tired all the time, flat affect, sleeping a lot. When he decided to stop the meds, I supported the decision. He has been hospitalized 3 or 4 times since then and each time meds helped to stabilize him - but when he was released, he stopped them.
That said, my son has managed to work part time and to keep himself going without meds. He sometimes can be horribly “rude” and I have to ask him to leave my house (I bought a home for him and put it in a trust for him so he has his own place). Over the years I have learned to separate the “real” person from the schizophrenic one and that is who I talk to and try to respond to. I set boundaries with the sick one and love the original one. I think of it as his real soul vs. his disabled soul. This protects me from a lot of grief. Of course, I went through years of grief at first…fighting my acceptance of his illness…but, once I was able to truly accept it, I could see that the son I raised was still there. This also helped the “walking on eggshells” - I treat him as I would if he were completely normal…except when he becomes agitated or nasty and then I won’t talk to him and tell him to call me when he is over the episode.
This “journey” with schizophrenia is very difficult. I have found it more manageable by understanding what I am able to cope with and keeping our relationship within these bounds. There is virtually nothing I can do to change/effect my son. I am his legal Guardian and still…nothing…except to step in if he gets in trouble with money, etc.
I tried… after the 5 or so years…to be strict and “tough love” to try to get my son to take meds when he was getting worse. He ended up staying at homeless shelters and living out of his car. He rented a room in a horrible apt. and that is when I bought the house for him.
You have many blessings if he is “settled in” and enjoying life. I would build on that. If he has a doctor he trusts or a situation he finds acceptable to take meds…GREAT . But short of that…there is not much Mom can do to make him take meds…except make everyone’s life miserable. Our county is supposed to have “Court Ordered Outpatient Mental Health Treatment”. Bill passed 2 to 3 years ago and still the Court will not implement it.
This is such a very – difficult – situation.
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I really enjoyed reading this, I don’t get to read about many people who have an unmedicated adult child who can work part time. If my son could hold down some sort of part time job, I would feel better about him refusing to take meds. Since he arms himself to protect himself, his paranoia is extreme, he’s a danger for too much time with other people. He seems to keep contact with anyone to a minimum as much as possible.
We will get where we aren’t walking on eggshells, which will suddenly end when he goes severely psychotic on us and we go back to eggshells.
In my opinion there is no one that knows your son like you do. We all can second guess ourselves but often it is our intinct and intuition that will save the day.
However I have to say how much I appreciate to solid and heartfelt advice I get here. I have learned so much from all of you.
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Look up Anosignosia immediately! Your son, like my daughter does not know they are ill and when you try to tell them they are ill it is like me telling you your son is not your son. (you would argue that statement correct, and it would sorta make you upset, right?) Please read: “I am not sick, I don’t need help!” by Xavier Amador Ph.D. My husband and I just went to a 12 week course to learn about Psychosis, Delusional Behavior and SZ…and it is the best information we could have ever heard, read and learned. The book is pretty much everything we learned in the 12 week course.
Basically it teaches you how to communicate with your son and become a “partner” with your son, so he has someone he can trust. That is HUGE for a SZ patient; they run into people all the time that tell them they are crazy, out of their mind, etc. and that is very difficult for them to hear all the time. They want a soft place to land where they feel safe, protected and someone understands them. There is no better place than with Mom. There are areas in the brain that do not allow for them to understand they are ill, trust me I have tried to tell my daughter a 1000 times what she does when she is not on her mediation, is out there, or what has happened in the past…It makes her recoil from us and well, go out on her own to “live her life, like she wants to”)! They end up attracting people who take advantage of them (especially in a females case) and end up getting in all kinds of trouble and can seriously hurt themselves, mentally and physically or land in jail! I could go into the many things, but I am sure you know what I am talking about.
It is very difficult to try to learn to communicate with them when they are not making sense to you, but one of the things that helps make it easier is: Respond like this: "let me see if I understand you, correctly; "there are people trying to kill you, right? He will respond…then say: “That must be very difficult for you… just to let you know, we are here for you to protect you in every possible way we can, so you have a place to be when things are difficult for you”.
They will begin to trust you again almost immediately…you don’t want them to run away from you, because “you don’t understand” as he might say.
Let me know if you need any addition information. This information has been a God Send to us and we now have our daughter back on mediation and she is doing wonderfully. Good luck and keep us posted!
Donna
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He doesn’t say people are calling him names or saying things about him but he does say that the people that are trying to control his mind say things in a certain way as part of the mind control. If that makes sense?
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Over the years, while unmedicated, my son has held down jobs he really likes, but something sets him off and he ends up leaving the job. Medicated he never works due to side effects. Currently he is unmedicated and trying to think of something he could do successfully. So even though he states he is not ill, he realizes on some level something is preventing him from working. We’ll just let him puzzle that out, although we know the reason!
He is pretty paranoid right now, so we remind him we support his decision not to take meds until he abuses substances or is a danger to himself or others at which point we will take steps to involuntary admit and start meds again. But yeah, I hear you about walking on egg shells.
I have found the book “I Am Not Sick, I Don’t Need Help!” by Xavier Amador to be helpful. Here’s a link to a video of the author speaking
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In group therapy for schizophrenics and schizoaffectives they kept trying to get us to look at ourselves, our thoughts, and our behaviors from the point of view of the people who made us feel paranoid, etc., and in doing so, they hoped we would start to unravel some of the delusional thinking.
I’ve also found some parts of DBT to be helpful, such as the Check the Facts skill. This is just a small part of it, and you can find lots of DBT skills worksheets on the internet. Some of it is useful…
Quote:
“Ask yourself: What are my interpretations, thoughts, and assumptions about the event? Think of other possible interpretations, practice looking at all sides of a situation and all points of view. Test your interpretations and assumptions to see if they fit the facts. Changing your interpretation by eliminating unwarranted assumptions can often result in the emotion itself lessening in intensity.”
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I have found Dr Amador’s LEAP process to work twice now to get my son to try meds. The first time it took one year, the second time it took two years. Both times, after trying meds, he stopped taking them. I suspect time #3 is going to take 3 years.
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My son is trying to figure out the same thing. He is convinced he could drive people around for one of those new companies - and he probably could do the driving part. He is able to drive at times and there wouldn’t be a set schedule. When he last worked, like yours, unmedicated, he made lots of notes to himself and did a really good job, it was a responsible position that required chemistry and calculations. They never had a complaint about his work or his attendance - more like they wished he would stop showing up. Their issue was the muttering, the anger, and the whispered cursing at coworkers. Eventually he confronted a coworker about calling him names (not real) and was fired for his aggression and name calling. He still feels justified as he is sure the coworker was calling him names.
My son got worse gradually and eventually the illness overpowered whatever suppressing he used to be able to do for longer stretches of time in order to work. Now its 4 years since his last job, his psychosis actually is chronic, persistent and debilitating.
Add in that he arms himself with knives or guns to protect himself against threats that aren’t happening, He cannot be in anyone’s workplace or driving anyone around in a car unless he is medicated and stabilized. Luckily his car is too old to qualify and he needs a newer model. When he made the car request after explaining his driving idea, I realized this was a possible motivator for meds per Amador.
He tried, my guess is that he could not get past the side effects. Last time I knew that was the issue as he lived with us.
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Yes it does. I asked because for some reason I never made the connection between my son telling me real people were calling him names - even when I knew they weren’t- and that what he was reporting was actually “voices” calling him names.
Hope that’s interesting! I never really thought about that. The smaller things that could definitely happen in reality like name calling never really occurred to me that it could be delusional.