Finally joined after reading for 2 years. Hi from a Mom


#1

Hi there. I can’t believe I’ve just signed up now. I came to this site 2.5 yrs ago, on the very night my 22 yr old son finally revealed to me that he had been hearing voices “yelling and screaming at him and creeping him out.” I spent many hours here reading through the site, and rather than posting, I read through the threads by other terrified newbie parents, with titles like “Heartbroken.” and “What now?” I got a lot of comfort from reading the tremendous outpouring of kind and supportive responses from other parents and from members with SZ.

I kinda wish I had logged in and posted that night, because it’s hard to recap 2 years of backstory now! I think the reason I didn’t was because I felt my son’s case was unusually complicated by the fact that he also has Down syndrome. We lost at least 6 months, I’d say, for a diagnosis because every time I talked to his Doctor (GP) or caseworker, I was reassured that “self-talk” was completely normal for people with DS. Even if I explained that it was some kooky nonsensical language, no one seemed alarmed but me.

Anyway, I’m too tired to recap our ordeal of the past few years, tonight. I’m sure I will fill in the blanks later. He is now on 12.5 mg a day of Abilify (just recently dropped down from 15mg), after a hellish year on Risperdal. He gained 90 lbs on Risperdal, and has not lost much since switching to Abilify a year ago. That kind of weight gain on a person of short stature is truly debilitating, especially combined with the social stigma of being fat. People used to be so kind and welcoming to him when we were out and about. It seemed like meeting a person with DS really brought out the best in people. Those days are over … between the obesity and the mental illness … let me tell you, the “hey buddy, how ya doin?” and friendly fist-bumps are long gone.

Ok, didn’t mean to get that in depth tonight. Just sharing an observation. But I’d like to ask a question about posting rules on SZ .com. I get the feeling that posting about recent news events that involve mental illness is discouraged … Is that right? The last time a news event happened, I expected the forums to on fire with discussion and was surprised to find a remarkable silence on the topic here. Are topics like that taboo here because of “search-ability” concerns? Or perpetuating social stigma about SZ? I checked the posting guidelines before writing, but I don’t see any reference about that.

The reason I ask, is because I was seeing a lot of mean and ignorant comments on news sites, So many were bashing the parents mercilessly, with no facts whatsoever to make those accusations. It was making me sick, and I began chiming in to set them straight about how difficult it can be to diagnose or find the treatment for an adult child with mental illness. How serious mental illness can go unrecognized for a long time, and you can’t just lock people up for having “issues.” To my disappointment no one had the slightest interest in being enlightened. It was beginning to really eat me up inside, how little compassion the public has for the families and people dealing with psychosis. They wanted someone to hate and blame, and facts simply were not going to dissuade them from attacking the parents for ‘patient dumping’ and washing their hands of their kid.

I finally realized that this was not the time; they were in no mood to hear any sympathetic comments towards the family. Maybe just let the facts come out and hope they are more receptive to considering them when emotions have calmed. I guess I was feeling personally attacked; because my situation is not all that far from those parents. I am a concerned and loving caretaker/parent who is also grasping at straws trying to find solutions for my adult child. I am exhausted by this unexpected turn of events in our lives, and suddenly becoming a 24/7 caretaker just at the moment I hoped my son would becoming a bit more independent. I am desperate to try to help him find some little slivers of joy in his life, when he seems so endlessly miserable. It is unbearable to hear people swoop in and declare that someone is a bad parent, based on nothing but their ignorance.

I guess I just finally had to vent somewhere that I knew people would understand the heart wrenching decisions/ battles that the parents have to struggle through. (That’s an oddly constructed sentence. Sorry). Ok, bracing myself, just in case I’m wrong, or we are not supposed to talk about that stuff here.
Thanks for listening :slight_smile:


#2

Welcome. I have not noticed any taboo topics here. What big news are you talking about? We are ppl from all over the world here so all news can’t be noticed by everyone. Unless someone post it. :wink:

Sorry to hear about your son. My son has autism. He is 13 years old and lives not at home. He lives in a treatment home with school. I don’t know what it is called in english. They are learning him to not use violence and to go to school.


#3

Welcome to the forum. 2.5 years :smile: Glad you finally signed on with us.

Even though there are no guidelines against posting negative news it just isn’t something most of us want to do, at least I don’t want to. Other then posting things on current treatment etc, I do my best to only post positive or family orientated articles. Some are sad but not negative in nature or generally stigmatizing to mental illness. I rarely watch the news either so I’m not really up on these occurrences and glance over them when I do see them. I figure why bring the negativity onto this site.

I look forward to you sharing your story with us.


#4

Hi Comatose. Thank you for you reply. The news was about a tragic killing/suicide rampage that happened last week, here in California. The parents knew their son was extremely shy, and was depressed. He had been diagnosed with Asbergers. (sp?) and had been seeing Psychologists since he was 13, but had never displayed or talked about violence, until a few weeks before the tragedy.

When I was trying to figure out what was ‘wrong’ with my son other beyond depression, I started to wonder if he might have Autism. I didn’t (still don’t) know that much about it. I apologize if my observations are way off, but until he was about 10 years old, he always would play with toys that were “flickey,” as we called it. Pretty Pony, Troll dolls, Batman Figures with a fabric cape … anything that can be flipped from side to side, with movement. He would flick it back and forth, and kind-of sing to himself. It almost seemed like meditation.

He grew out that around puberty, but as he grew quieter and more withdrawn, something was going on that we could not figure out. Finally when I mentioned to his teacher that he would not bathe unless he had a specific green washcloth … she mentioned something about Autism. I began to wonder if that was a factor. Does Autism intensify as the child gets older?

Eventually, when he revealed that he had been hearing voices; things got worse really fast. And my Autism theory was forgotten. Maybe I need to read up on it a little more. Is it on the continuum of mental illness? Or strictly mental disability? Not sure if there’s a difference. I hope I’m not insulting anyone with my ignorance!

Thanks for your welcome!


#5

Hi Barbie. Thank you for your reply. When I realized that people with SZ are quite active on the forums, as well as caregivers, I thought that was really cool. Reading their point of view and suggestions is extremely helpful, because it helps me understand what my son might be going through. (Since he is so tight lipped about everything and anything). He gets angry at me, if I ask him about hallucinations. I can tell he wishes he never told me about it.

I’ve been hesitant to post because I worried that some of the stuff I was dealing with, since his psychosis kicked in, is kind of embarrassing. Personal hygiene type stuff, etc. Not always a pretty topic. And I worried that other people with SZ might not like me bringing that stuff up. For all I know, it’s a side effect of the meds.

I appreciate your help with the site etiquette.


#6

Hi Riseabove and welcome!
I guess admin would have to answer that directly. I guess I never thought to post some of that stuff. I figure we all know about it. I would rather raise hell about all the other issues we face everyday----meds, support, advocacy, etc…
I also think it would be great for you to post on those other sites—wether anyone wants to hear it or not-thats your right and I have done it myself. You can come and vent anytime. Were all here for each other and that`s a lot! OOO


#7

hi and welcome,i am sorry for your situation…write and vent about whatever you need to,to feel better…i don’t think there are any hard and fast rules…just be yourself…sending you warm wishes and blessings…HANG IN THERE…


#8

Hey there!
Autism and schizophrenia can go together. I am schizoaffective (depression + schizophrenia) and I have ausburger’s indicators (I have some of the symptoms of ausburgers but not all of them).
It definitly sounds like he has some ausburgers/ autism in there though.


#9

Hi and welcome to the forums. Glad you decided to join in. People are very supportive and understanding here.

With regard to your question - there are no taboo subjects here (just be respectful of everyone and follow the posting guidelines) - but with regard to what I think you’re talking about - the not infrequent issues that come up in the US with regard to guns and mental illness - people touch on that occasionally here, but as you probably know people who have schizophrenia are much more likely to be victims of violence than perpetrators - but unfortunately it does happen sometimes and the news/ press seem to love to cover violence and negativity.

The general interest here seems to be getting help and support around solving specific problems and how to help their family members (or other friends, etc.) who have schizophrenia on their path towards recovery.

I hope you find it valuable.


#10

Autism can coexist with sz. But also a person with autism can get psychosis during stress. Short psychotic episodes that will end when stress ends.

It sounds to me your son might be autistic. My son has become more and more autistic as he grows older. He is 13 now. He got an ADHD dx when 5 years old. Got autism dx at 11.

Maybe you should check him for autism?


#11

If there is anything you wish to discuss that you don’t feel comfortable posting here please fell free to PM me and I will do my best to help. I can understand being hesitate about posting certain topics due to the openness of the forum however as caretakers/family members we need somewhere to be free as well and here should be that place.

I agree that reading this forum, including the diagnosed section, can be very enlightening as to the experience of what our loved ones are going through.

I don’t know much about diagnoses outside of my son however it does seem common to have overlapping symptoms of autism, aspergers, ADD/ADHD, OCD… I know my son does. Recently we have started looking at his ADHD symptoms.


#12

Hello RiseAbove, Big warm welcome!!! Things will get better! Try to keep loving him through it.

I am quite new here too and also have a 22 year old son with schizophrenia. Please share anything, every little thing I read here helps me and has helped me here too…I read about the CA tragedy and my first reaction was oh no another bad name for us all, another step back in trying to clear mental illness from related violence but also of course tremendous sadness and regret that it wasn’t noticed that he was ‘peaking’.

I have just come home from a nightmare day. My son was out on his bicycle with his pants half down …at his knees…He had taken 11 vials of risperidone (1mg vials)…the voices told him to he says.It takes me all the patience in the world to talk directly to his voices firmly and then to him…and then some more energy from nowhere to try to deal with my own issues - neighborhood gossip and shame- you speak of some things i am going through (lack of hygiene and inappropriate topics- in my case he is telling me recently about the kinds of sex he has engaged in, in his past- a kind of guilt shedding or confession that the voices are insisting he tells me- sorry if that’s too much but it is for me too! This is a new phase) I would like to be able to share here in a secure environment without taboos…we have enough taboos already in our lives living with this disease and need really NEED to share the terrors and taboos IMO.

Thank you for mentioning Abilify, I have been interested in this drug, as risperdone/dal (we have their generics) are no longer effective for my son and we are seeing a new doc in 2 weeks…have to make some big changes.

And Comatose, I am in a different country too (in Asia) and there are very different approaches and things that are acceptable or expected in different cultures. I miss US options. Hospitilization for example is reserved only for cases here when the sufferer has physically attacked another person (not himself).

I don’t think the hygiene thing is a side effect, I think it’s a phase or part of schizophrenia. i am trying to focus on admiring his nicer clothes and telling him how good he smelled the other day when he had a bath and would he like to try my new shampoo etc…

Anyway. Just wanted to let you know. Nothing shocks any of us that are living with this.
Much love to you and strength. <3


#13

@RiseAbove You are very (intuitive/insightful/empathetic?) about others emotions. That is certainly a big help for a caregiver of someone with Sz. There are many times where my inability to express myself really frustrates me and having my fiancee be intuitive like you really helps take a load of responsibility off my shoulders; I find it very stressful to try and find a way to communicate and answer “why?” all the time. Not because I don’t want her to know but because I often can’t find the right words to communicate or I simply don’t know.

If you would like to ask any questions of a Schizophrenic person feel free to message me, I will be open and answer what I can.


#14

@forevercarer I’m in Sweden. Here you are hospitalized if you are suicidal or incapable of taking care of yourself because of acute mental illness. But it is hard to get into the system. Many ppl are denied help when they ask for it. Some years ago a man was denied help so he went out and stabbed a 4-yearold at a daycare center.

Also I wanted to add that when I get worse, more ill, I stop showering. I stop taking care of me. That is my first sign of that something is going on. Then I stop sleeping. After that the circus is starting to live it’s own life.


#15

Hi forevercarer – Just wanted to share my son’s experience with Abilify. He was taking the pill form 10 mg and it was not enough to control his symptoms. Son had on his own stopped taking his other ap’s Zyprexa and Trilafon about four months ago. He melted down about a month ago while on only Abilify and became very psychotic and was hospitalized.

Since son tends to be non-compliant with meds, his well respected pdoc suggested one of two monthly injections - Abilify or Invega Sustenna. I was surprised he suggested Abilify and questioned him on it since the pills were not controlling symptoms. Pdoc said the Abilify injection is much much better than the pills. We did however end up going with Invega Sustenna.


#16

Hello RiseAbove,

Very sorry to hear of your situation, I know that’s tough. But did want to welcome you to this forum :wave:

Pls feel free to vent any time. Nothing shocks us. Hang in there.


#17

Hi @lovemyson. Has your son started the Invega? How is he doing on it so far?


#18

Hi there Wave!

He has. Had his first injection at the hospital, then a week later on May 20 had the first monthly injection. I can tell a big difference, he is much calmer, not psychotic any more.

He told me a few days ago that he used to wake up and the paranoia would hit and stay with him all day. He says now when he wakes up, he feels a tinge of the paranoia but then it quickly disappears and stays gone, yay:)

The first few days he was home from the hospital he was quite interactive, but I have noticed as time goes on he is becoming a bit more reclusive. Still 1000% better than he was though.

He is taking care of himself, walking every day, going up to the pool a few times a week, taking his vitamins, although his dad said he smelled pot on him yesterday. I was very disappointed at that – he just can’t seem to shake his pot addiction and I’m at a loss at how to get him to stop :worried:

How are you doing – have you decided if you will make the switch to Latuda?


#19

I don’t know yet if I will make the switch over to Latuda. I am glad to hear that your son is doing better. The med that I am on, Risperdal is related to Invega, they both are good meds. Risperdal is keeping me together for now


#20

I can understand not wanting to make the switch for an unknown outcome when you’re doing well on Risperdal. At least you have Latuda as a back-up plan if things start to go awry with the Risperdal.