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