Lots of us here have been through or are going through similar.
Welcome
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Lin, that must seem impossible. As you know he can be so much worse off in the streets. First, I think I would try to get him to the local mental health clinic so he can get in the system. A therapist and Doctor might be able to get him to try some medication. Is this what you have done already. Donāt be afraid to try at different times.
He is likely eligible for some help and a social worker can be assigned to him to help with that.
My son was just starting to see a therapist and had to be hospitalized but we will pick up where we left off. He hasnāt lived forward in years truly but we must stay positive.
I pray that a something will change and he can get some help both to feel better and to provide some help to you. I canāt even see that for my son although it is all he talks about. Truth is he has not held down a job since he has been sick and he hates it. I would hate to be dependent on my mom too. Hang in there and welcome.
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yes, since finding him he has spent the month of August and October in different hospitals. I managed to coax him to hospital in August as he was still suffering from his long walk, but mid September he stopped taking the meds he was given and started acting out , yelling at me, saying i was conspiring against him , stuff like that. So i called police and got him admitted to hospital again. Almost the entire month he was there he did nothing but sit in his bed and i had to go to court to get what they call āsubstitute decision maker statusā so that i could force doctors to make him take his meds. After a week on the meds they sent him home on a ācommunity treatment orderā in which a nurse comes to my apartment to see him once a week and checks to make sure he is taking his meds. They want to change his meds, but he refuses and they dont want to push him on the subject hoping this will instill trust in them.
I want to get him on a disability pension which will help us find a better place to live, but since the doctors have not known him very long they do not want to sign the paperwork. This is frustrating to say the least.
All i have really found out is that in order to get what you want from the doctors etc. you have to figure out how the mental health system works and in order to do that you have to have had to deal with them for awhile. I am learning.
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Our sons āWorldā.
In this tri-plex apartment, I asked husband: in light of sons insistence on being isolated, could we put him in the kitchen? I can at least SEE him without having to go into his bedroom over and over like a maid.
He says (son) itās the best thing to ever happen.
His own world.
I wasnāt sure if it was the ārightā thing to do. My career background is with behavioral challenges/nonverbal/autism. NOT sczā¦so, should I encourage isolation?
The reality is he is going to seek and hold on tight to isolation. P-docs werenāt even concerned that we were, in effect, supporting isolation.
We cannot take his phone or computer away. Limiting hours is a challenge. Getting him into his art works, but nothing else. Nooooo, do NOT try to get him to interact. Dinner time? Itās at his desk.
Leave him aloneā¦he was like this as a baby. Be near me, but SCREAMED if he was left in the playpen next to me. Pediatrician said he was āquiet/shy/needed momā. He did okay in childcare, just okay. They said they had to adapt and modify some things for him. Basically, leave him alone.
Heās in the kitchen/dining room.
From 8am (minus time when he slips off to bed due to being so tired) until 9pm.
He doesnāt join for family things. Dad can get him to watch (a really, really stupid show!! JMHO) āTrailer Park Boysā. One or Two episodes. He will also watch āArcherā (another really stupid show to me) occasionally. Husband and I prefer documentaries or period piecesā¦but if these two shows get him to sit with us for an hourā¦well, itās an improvement.
Iāve tried to add a calendar on the wall to help with understanding what day or month it is. Each day it seems that I have to remind him as to the month. He does any school work from this desk.
(Aside: how can he āpirateā and remake the coding for video games but not know what month it is? It used to be an issue, the constant upset over the desire to buy yet another game. We told him ānoā, budget, etcā¦and use games as a reward. Resultā¦he learned how to pirate the expensive games instead. The internet provider contacted us about this. Geeeesh, itās all I can sayā¦geeesh. Really dude? Canāt add up money, weāre working on that still, but recode the game so that the environment ālooks rightāā¦that we can do. PIRATE? That we can do. I canāt even turn off the dang thing.)
His āworldā.
Do Not Disturb.
Andā¦ you are doing great!
It is the unofficial route it seems.
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Squid -
I have to respond and give you some hope. My son was in a terrible state just this past summer (violent as a matter of fact and got arrested). Upon being arrested, he went in-patient for about 2 weeks and thankfully, the p-doc had the insight to change up his meds. He was on Abilify when he was admitted (among other thingsā¦) I had suspected the Abilify wasnāt the right drug for him and was in the process of getting his meds changed when he went in-patient. He was put on Zyprexa and Trileptal. He has gained a lot of weight because of the Zyprexa but he told me it is worth it because the voices are almost non-existent now. He is back to being his old self and not this angry, pacing person that I barely recognized. He was on Seroquel at various points during his journey and I found it to be very sedating. Not the best drug out there in my humble opinion. It seemed to make him very anti-social and withdrawn. Anyhow, I can relate to your feeling that youāre shouldering the burden of this. I, too, have that situation. My husband is bipolar so he tends to overreact to most everything and so a lot of things, I donāt tell him because it will just flip his switch so to speak. I had a lady ask me last night (when I was getting my hair cut) āwho is your support system?ā Well, honestly, I donāt have one. Except for this group. I have trust issues from a bad childhood and am extremely self-reliant. Donāt like to let very many people get close. Sounds terrible but true. So I just handle what comes day to day and roll with it. Anyhow, you will find most of the moms on here are dealing with an extremely full plate and we just do it. Thereās no magic formula. OR maybe there is. We love our kids so much that it motivates us to keep on going. 
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I paint my nails. 
Silly, I knowā¦but I feel ānormalā again.
My husband is dx with severe anxiety and depression. One Dr dx him as scz. Heās my best friend, and a wonderful father. Heās just all around a great guy. Uber quiet though, and socializes minimally. Stress hits him hard too.
Appreciate the word about Seroquel. Itās workingā¦the alternative stinks.
Soā¦I paint my nails. Sometimes, Iāll talk with other ladies in the nail section. 
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What you and your son and entire family are going through is harrowing. But youāll get through it. I have 3 now adult children; my daughter has moderate autism and schizophrenia. My youngest, a son, was finally diagnosed as bipolar in adolescence. He also has learning disabilities. Evaluation to rule out learning challenges is a good idea; you and he need to know what he is dealing with. Having learning challenges or developmental delays does not mean he will never marry or have a good life. If the schizophrenia can be managed, he may do much better than you now believe.
I am a retired speech and language pathologist and have worked with at least 1,000 children over the years. Iād like to ask a few questions if I may. What was it about school that made it impossible for your son to handle? Were appropriate accommodations made for his special needs? Iām surprised that at his age the medical team is recommending evaluation for developmental disabilities. Didnāt the folks at school suspect that, too? You are not alone. Take good care of yourself while taking care of your son!
You are such a rich resource for us in this group! I agree with your ire at the fact that politics are coming between people who are battling mental illness, developmental disabilities, and physical disabilities and the proper care they need and deserve. It is unfathomable and maddening to me that our citizenry accepts this as normal.
This is long.
He was in Preschool and Early Intervention throughout the first years of elementary. This would beā¦WA and UT. Utah talked with his psych and agreed that he needed to get settled on meds as he was just newly dx, so he was put on K12 to work through a computer. TX after that, they said to keep him at home, as he was his meds were still an issue, he was in active psychosis. Home Schooled for remaining time in TX.
Thenā¦ main streamed in NE for 2nd through 4th grade. He grew sociallyā¦and made tremendous progress outside of school. Within school, he deteriorated academically and psychologically that year, increasingly being sent home. NE didnāt have a child psychologist locallyā¦the nearest was a 4 hour drive one way. Skype psych visits were used with very little success.
KY for early middle school, and I have to say they did everything they could. His hallucinations from the stress and med reduction grew so intense he was almost hospitalized (also 1 serious suicide attempt, multiple self harm incidents). He also missed a lot of school as his psych and therapist appointments were several times a week. That was 6th grade. They switched to HomeBound care, with a teacher coming twice a week. She had a very hard time getting past the medication tiredness and the deep depression he was under, but gave her all. She liked him a lot, and is a fantastic teacher. More than half his visits were with him falling asleep. The other half, he would be so very depressed, often trying to hide that he was crying.
Unfortunately husband lost his job and we had to take the one that was available in CA. The very second the couch was sold (where he sits) he lost it. Literally went catatonic. We moved to CA, soā¦
CA said they could put him in an autism class but they did not want to. It would be in the local Middle School (9th grade), and they felt it wasnāt the best set up for him. He canāt mainstream any longer, and would be triggered by the other classmates. The last time we were here, they said they didnāt have a proper set up for him. The school has a fenced enclosure, he thought it was like a prison. He really struggled with the loud speakers, the gates, the food.
The food is a big deal. The teachers individually. The classmatesā¦he really isnāt interested in other students. As far as his behavior is concerned, every teacher said he is the most polite, most agreeable young man with a tremendous focus on courtesy. That is until the hallucinations start. He also has severe test anxiety, with suspected OCD component. Homework is a big problem, as he stresses over each and every assignment. His accomodations stipulated 1/3 the amount of homework with double time to complete. In theory this is awesome (I worked as an advocate for our local community college, we used this often with adults. I get it.)
Double time doesnāt really help with the homework. So itās double timeā¦that doesnāt magically grant more hours in the evening. School agreed about this as we were moving along. If his meds make it so that heās barely awake at school, and his evening doses put him to sleep 1 hour after dinner, then when is he to do the homework? He would begin to stress about each assignment given in each class, that they are now over due, with many that had to be redoneā¦and that would push him right over the edge. Ohā¦he also had two periods where he was placed in a class called āStudy Labāā¦itās basically where the special needs students went to have a teacher help them with homework. The teachers would explain the homework, and help. They would send emails (several emails a day from the school), I would continue with the supplemental education once he arrived at home, and heād fall over asleep while eating dinner. IF things went well that is.
In KY I was called to pick him up at least twice a week. They did everything they could, often working with him alone in the main office. They said itās larger than they can handle, and he was in torment. He should be home until he can get settled again.
I think they did great! They succeeded (in KY) to help him through his food issues. His Early Intervention classes in elementary school were successful to a degreeā¦they did wonderfully too. I think the main issues are that after we had to move cross country, the pdocs and school could see that he still needed HomeBound, but itās not available here.
Why? Please explain further.
Before I left work to care for our son (elementary school age), I was an Instructional Aide for the severely handicapped with speech and behavioral challenges. I worked a lot with the speech pathologist as a 1:1 aide, particularly as I know sign language and am a very calm person. (Very few people actually find out how much education is necessary to become a Speech Pathologist! I went into Social Work studies, with a focus on Advocacy and mental illnessā¦long before my sonās dx.)
I just finished a phone call with our sons Dr. He is very eager to get the testing underway, as he suspects developmental delays with some additional concerns in regards to his psych episodes in school (KY). This Dr actually worked with everyone in KY from his base in CA, so we fortunately had continuity. The pdoc team really wanted him hospitalized in KY, and called in a Dr from the local Mental Hospital to the school to evaluate him. It was determined that he could remain at home, as long as extensive safe guards were in place and a safety plan was implemented for stand by.
I know this is scrambled, Iām trying to organize years worth of informationā¦and not succeeding very well! 
He was tested in WA (Early Intervention) and then KY (Middle School). First test showed delays. Second test showed delays in only Math. By the end of his time there they suspect he was already deteriorating. His hands shake most wretchedly so we could see (teachers and home) that his handwriting was going fast. He also has trouble with āthe linesā moving on the page. HomeBound teacher discovered this too, and found that if heās looking at a computer screen it happens less. Reading print is almost impossible, the ālines moveā. (And yes, we got him glasses.) They think the lights at school added to the visual problems.
Two incidents of violence towards another student, and several delusional situations with other students that became a serious problem at school. He began leaving the school grounds and hiding in the bushesā¦obeying some command or delusion.
Hmmmā¦I think thatās in a nutshell. I guess Iāll have to go through the same history with the Pdoc evaluator. She is through the same hospital as his psychā¦ UCI. Ohā¦this is the same hospital the called in a specialist to evaluate his meds, proper amounts, etc. When they reduced his meds, they asked for him to remain at home until they could be balanced. We did. In KY we public schooled with the med changes, and it did not work out well.
Our son keeps talking about how worried he is to go to college. He seems overly concerned with his hands shaking, and how he will handle the lights. I donāt know what to tell him. He canāt tell time on a standard clock anymore, he canāt count change anymore, three part instructions are a challenge.
I donāt mind answering questions, and am welcome to feedback.
Please, just rememberā¦I canāt change the fact that husband job moves locations, and I donāt always make the best decisionsā¦but Iām doing my best.
Thank you for your patience.
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What youāre describing reminds me a lot of my son AND my husband, both of which have SPD - sensory processing disorder. Hereās a link to some basic info but you may already be familiar since itās in the autism āfamilyā: Sensory processing disorder - Wikipedia
In my son it manifests in a lot of weird ways. One common one for him is to always be cold and wearing a jacket even when itās 100 degrees. For some reason, his body misunderstands the stimuli of heat and cold. With cold, he barely even registers it. As a young child, this led to more burn accidents. He also is fascinated by ice and can hold an ice cube in his bare hand with no issues - it actually feels good to him as it melts! After 3 years that still freaks me out!
My husbandās SPD manifest differently and revolves largely around crowds. For him, lots of people talking at once or even just more than one at a time is like nails on a chalkboard. He frequently needs time to himself and cannot stand to have people near him when heās trying to concentrate on anything.
Both of them are very much loner types and isolationists - I am literally my husbandās best and only friend. If he didnāt have to leave the house, he wouldnāt. Heās learned to cope with it a little better than my son. My son goes to school and comes home and thatās it. We tried online school for him but couldnāt get him enrolled.
Anyway, itās not an exact fit but maybe thereās something there? Iām no doctor, it just reminded me of them for what itās worth.
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Thank youā¦
Sometimes, at least this morningā¦5am, I just finished making husbands lunch as I always do and heās off to work, the boys are still asleep, and Iāve had 1/2 a cuppa coffeeā¦so in this very pure āmy timeā momentā¦
I think itās wonderful. My husband is certainly unique. I pulled out the quote that hit me the deepestā¦not hit in a bad way, just that way that shouts: āShe gets itā¦ā
He is different than other men in general. We donāt know if his (husband) dx is something along these lines or if itās beyond/different than the last Dr said. Heās just different than the average bear. Anxiety is his greatest challengeā¦and yet he works in a dangerous field and has handled this amazingly for years.
He says he canāt wait to get back home. Iāve never seen a man look so miserable to leave, and so very happy to arrive back āat campā. For 16 years Iāve watched this man leave for work. He hugs me like this may be the last time we see each other every morning.
Our older boy does the same thing. Thereās a bit of a soldier look to their faces. The anxiety about going into public is there. They are āmanning upā as my husband says.
Sometimes it seems that the anxiety (or whatever it is) is concentrated in our youngest son (dx EO Scz). I actually am quite grateful I spent so many years working around autism. There are many little things that are not an issue because we already had a ātoolā in place, or I just donāt think itās āweirdā.
My father (my mother was dx szc) used to say: āweāre all a little bit madāā¦he was a quiet man who was referencing the caterpillar in āAlice in Wonderlandā I think. Iām beginning to understand him more and more as I grow older. When I worked with autism (many, many years ago) we used to refer to a training statement: "āweāre all a bit autisticāā¦after all, many of us also hate those little tags sewn into the neck line of shirts!
Then againā¦
Thanks for the linkā¦Iāll read more after the next cuppa.
Author, you are describing my husband to a T. Does medicine help? And if so, what type? My husbandās background is German so he self medicated with Heineken. He just started to see a psychiatrist and is on an antidepressant. Truly it only helps a little.
The older he gets the less tolerant he becomes and the more I find myself having to accommodate and smooth out the wrinkles of life. What a metaphor.
Iām thinking we all need to learn meditation and practice it together daily.
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Husband changed a great deal once the right meds were found. Dx severe anxiety.
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@Squid - A good looking family! Best to you all.
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I think this is a common trait among schziophrenics. Iāve read this before on this forum. My son wears the opposite of what the weather dictates most times and seems unfazed by it. Interesting about the sensory issues. When my sz son was in kindergarten, his teacher reported that when the class would have a party for a special occasion (Valentineās Day or whatnot) and the noise level was higher than normal, my son would go to the corner of the room and put his hands over his ears, staring into the corner. She is the one who suggested I take him to a child p-doc and have him tested or get a diagnosis. The diagnosis was severe ADHD. He did well in kindergarten due to a fabulous, tuned-in teacher. First grade, not so much, teacher was new and my son, being very head strong at that age, was literally running the classroom. When she couldnāt get control, sheād put him out in the hall and have him sit there for hours! The principal intervened after finding him wandering the hallways one day and started having her send him to her office to play on her computer and hang out with her. I felt like she was giving up on him. We had many, many conferences that year. He turned over his desk one day, I think, purely out of frustration. A teacher who couldnāt figure out how to deal with him and kept putting him out of the classroom. It was a really rough year. He doesnāt have the sensory issues anymore, but they plagued him till about middle school.
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Make sure docs order mri of brain to rule out any brain ailments in addition to psychiatric approach.
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We have to remind them that evenāsaneā people go thru periods of not knowing our purpose. My 22 yo old SA Son moved out on his own 2yrs ago and even though it can be terrifying to think of him being lonely or afraid, he feels like an adult now. He wasnāt able to go to college so far, but he dabbles in music as a songwriter and musician and works as a waiter. I think itās key that they are medicated only as much as necessary and not put in a coma. My son has never taken more than 3 meds at a time. He only takes clozapine now. Everyone is at a different stage in their illness. Try to encourage any hobbies or interests and push a little to get them out in the world. Wishing your family the best.
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I love thisā¦
Thanks!
He asked me yesterday if it was okay that he did not get married or have kidsā¦could he just be a hermit? He could learn to work from home? OR perhaps build furniture for people?
We donāt have a wood shop. We have NEVER had a wood working shop.
Husband builds monoliths out of concrete and rebar. (Zoo exhibits, roller coaster rides, sculptures, etc.)
As far as I can tell, he doesnāt really āgetā what Dad ādoesā.
I didnāt know what to respond. I kept asking myself: āIf our older boy said this, would I think: schizophrenia, or would I think: normal kid who doesnāt understand all the dynamics yetā?
I decided to go with the latter. I asked if he knew what machinery was needed for a wood shop, and what was needed for an online business? He āgot itā.
He has thousandsā¦and I mean thousands of dollars worth of computer equipment thanks to Dadās love of both computers and his son.
What business can he do?
āSomething like You Tubeāā¦
Okayā¦well, letās work towards that then.
I donāt have a clue what Iām doing. 
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Thereās lots of things he could do with computers: e-commerce, website development, graphic design. See freelancer.com for an example. As a self published author I am heavily involved with the online realm. He might need to take some classes to get some skills but itās very doable.
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