A mother looking for advice for son

My son has yet to be diagnosed with schizophrenia, but he was diagnosed with Autism at 6-7 years old with ADHD and other comorbidities. This past weekend he asked us for help and explained he had auditory voices that do not go away and are getting louder and more aggressive now this isn’t the first experience with this, and they have had him on Seroquel from the age of 7. He is 15 now and she went up on his dosage to 100mg and it seemed to be too strong today to the point I had to keep him home from school today because he couldn’t walk etc. I am at a loss I don’t know what to do. The best I can do is call and speak with them I have a huge fear now that the voices are becoming more louder to him and want him to be able to function and the medicine work. He mentioned to us that Seroquel got rid of visual hallucinations but the auditory voices are still coming through. Does any other mother or father have advice about getting through med changes and how it works. His psychiatrist is been treating him for many years but I need help as a mom on how I can talk to her. I just want him to have normalcy as much as possible. His IEP team at school doesn’t have any clue about these symptoms and my son wants his privacy. This is hard.

1 Like

Welcome Sunflower40, I am sorry, you are in a tight spot. Personally, I don’t have any experience with meds as my son refused to take them. I did want to say that your local NAMI chapter might have a parent support group for caregivers of children. In the NAMI support group world, they like to keep, the parents taking care of children and the family members taking care of adults, separated from each other. I used to drive over an hour to attend a NAMI support group after we first learned about our son. (We had driven 90 minutes to attend the Family to Family classes) But I know, for some people there isn’t a local NAMI. If you search, there may be an online NAMI support group for parents of young children.

1 Like

@Sunflower40 - Welcome to this forum, I can hear how much you love your son. You are indeed in a painfully difficult situation. Having been where you are many years ago. One of my biggest regrets was my inability to fully accept the gravity if my son’s mental health and what his condition meant in regard to his own autonomy. Had I accepted it sooner than I did, I would have obtained my son’s legal guardianship long before I did it when he turned 21 and things were 100X worse by then.

Once your son turns 18 you can no longer legally have any say in his care or doctor appointments or what happens when and if he goes or how or what medications he takes. As a mom that experienced that, there is nothing more frustrating or heartbreaking than to be told that legally you have no rights to help your son unless HE signs off on it. [I always wondered how a young man is supposed to “sign off” on what is best for him when his mind is not his own? and 1000’s of unwanted and often deprecating voices are shouting in his head at all times?]

The second thing I regretted was that I also wanted to respect my sons’ “feelings” (I put feelings in italics because- are they really his authentic feelings or are they being dictated to him by the voices?) One has to wonder. I decided after much hardship with my son and a couple of close call suicide attempts, that my way would be the only way regardless of his opposition to anything, I told myself that if he was against going to the doctor, telling the doctor the truth about his condition, taking the appropriate medications etc… and for my son it was also keeping him off of street drugs and away from people that would give him drugs. …But I told myself if he was against all of that, then I was all for it and I would make things happen no matter what.

The only hope I had of success at this point was after I was granted my sons’ legal guardianship, it was only then that I could sit in on every appointment, inject my experiences with him and correct the delusional statements he consistently made to the doctors that “He was fine” and that he didn’t have any problems.

As far as drugs, that is an entirely different story, it also has to do with where you live in the country, your insurance or lack thereof and the progressive or lack of progressive approach your sons’ psychiatrist has. I’m in Ohio and I was fortunate that early on my son had a couple of very skilled and progressive psychiatrists that were willing to prescribe aggressively and yet with caution to get my son sane again. Insurance wise you have to go through several newer meds before the psychiatrist can then go back to an older and in many cases much more effective medication. I know how wrong and destructive this sounds but this is the state of our health care system such as it is.

My son went through, Geodon, Seroquel, Risperdal, Invega, Abilify and after very little progress and some difficult weeks and months. He finally labeled my son “treatment resistant” and he recommended Clozapine. This was the real turning point for my son. To make a long-long story shorter, after a year or so of steady and monitored use of Clozapine my sons’ voices vanished as did many of his worst delusions. Gradual and very slow progress for the better was made year by year ever since and leveled out in recent years.

Now it’s been well over 15 years and still no voices and very few if any delusions. This is not to say that my son is cured or that his life magically went back to whatever society deems as normal. Not at all. Like you my son was on the autism spectrum early on but undiagnosed. He also had learning delays and developmental delays and as a single mom in the 80’s there were very few resources for me. I was often more focused on putting food on the table or making sure the lights stayed on.

My son will always live with me as he still needs redirection. Schizophrenia often robs the patient of motivation and self-direction, so without me it’s likely he will just sit or just watch tv endlessly or smoke too much. With me, we go for walks, and he shops with me, and we work on projects around the house, we go to festivals when we can, and we go to a local gym bad weather. I engage him in conversation all throughout the day as another symptom of schizophrenia especially the disorganized form is “poverty of speech” so his default mode is not to talk.

I say all of this to manage expectations and not to sugar coat anything. Don’t get me wrong, I am beyond happy with my sons’ stability such as it has been over the years and for the most part, he seems content with the simple and stable life we’ve created.

All mental health is a journey, for all involved, it is seldom easy and it’s unique to that person. Suffice to say where parents and their kids are involved. The one with the sane and sound mind has to prevail for any positive progress to be made. My son screamed he hated me 1000’s of times over his course to wellness and stability. Yes, it hurt, but rationally I knew it wasn’t really him talking. Now that he is stable, he has no memory of saying anything like that and we have a very close bond.

I’ve spilled a lot here and I apologize if I overloaded my reply. My aim is only to help if possible.

Lastly, I have to say that I took NAMI’s Family to Family course (it was free when I took it) and it was invaluable, a wealth of insight and knowledge. Another invaluable choice I made was mental health care for myself to keep me grounded throughout.

I still see a therapist to this day. She has really been an enormous asset to me. Feel free to read over my past posts of which I think there are many and also feel free to write anytime you like in response to any post you wish. However, as you and your son move forward in this (unasked for) journey, I wish you the very best outcome possible. NAMI Family-to-Family | NAMI

All my best, Catherine


I am assuming that you are allowed in your son’s sessions with his psychiatrist because he is under 18? If so, my suggestion is to keep a journal of all episodes that occur with your son whether they are emotional or physical. I got the Dr’s fax number so I could write up my observations and comments before an appointment and she knew better what to ask my daughter about. Generally, I was quiet during the appointments as comments from me could generate upset for my daughter.

@Catherine and @hope also gave good advice. Good luck.

1 Like