Speaking only from my own experiences. I’d like to share that I believe that your son’s condition and communication abilities can improve with time, compliance, consistency, reduced stress and age.
Your son is very fortunate to have you, he may not be able to express himself to you right now but never doubt your importance to him and his future wellness. It takes awhile to find out what medications offer the most benefits with the least side effects. The process tests everyone’s patience.
Then it takes awhile for your son to become accustom to the ever changing brain chemistry, with the introduction of each medicine. The medicines may need tweaked or changed-others added or subtracted. It’s hard to continually adapt.
His doctor needs to know any progress or lack of progress-new or worsening symptoms that happen especially if your son is not very able to express himself very well to the doctor during his visits, that can be difficult for the doctor when prescribing what will work best based on verbal feedback.
I would suggest if you can go to his appointments with him that would be helpful to add your input. If that can’t happen, due to travel or distance then maybe a letter to his doctor letting him know your concerns and what you see specifically when you visit with him.
My son was diagnosed with Disorganized Schizophrenia in 2005- he was 21. We (the doctors and I) surmised after the fact that he likely started having the voices and delusions several years before but because he also had ongoing addictions we thought that was the main issue and early on had him in rehab. In the early days he barely spoke a word-ever. When he did utter anything at all-it made no sense.
I understand the complete frustration. It is extreme. I think what helped me the most and this may not be a possibility in Europe or the countries you and your son are in but I went to an extended free class on mental illness offered by NAMI here in the states and it was the ultimate eye opener for me. I learned so much about mental illness and what it is like from the perspective of the ill person. I think I gained the deeper compassion, and understanding I needed to be his primary caretaker, which is so far different than just being his mom. He went through dozens of medications and side effects and changes an hospitalizations, issues getting off of street drugs and away from bad influences etc…etc…2 suicide attempts …we tried so many many things.
Ultimately I moved away and he ended up living with me, I am his legal guardian, I handle all the finances, he is on disability, he lives a simple, predictable low stress life, he can’t work but in the years since 2005, he stabilized on clozapine and depakote, he has been clean and sober since 2009. He has developed several hobbies, music, coin collecting, TV, recycling, some minimal gardening and cooking, and he seems to love to go to parks -be in nature and attend festivals, fairs, and concerts when he can and he walks an hour almost every day with me.
I say “seems” because he still is not an overly emotional person although now he “gets” a good joke and can tell a good one sometimes too.
In addition his speech slowly improved, it took a very long time. I talked to him every day even if I didn’t get anything back or even if what he said made no sense. I kept at it. I learned (with counseling) that I actually spoke too fast for him to process, so I slowed it way down. Things improved. He responded more and more. I had to repeat things for him at times. I had to learn not to repeat them with any sound of frustration or exasperation. He could pick up on that and make him more quiet.
Now -today -we can have discussions, share interesting ideas, he is still never going to talk anyone’s ear off and he still tries to avoid phone calls but he has started making his own dentist and doctor appointments recently -so that is real progress. He is 35 now and has been free of voices and major delusions for several years. The remnants of the illness that remain (even with the wellness) is the persistent lack of motivation, inability to self direct, strong drive to isolate, refusal to maintain outside friendships and intermittent confusion and forgetfulness that can interfere with completing tasks from time to time.
He keeps notes and lists on everything. It helps him stay organized.
Compared to 2005 he is light years improved. I can relax with him now. Think of myself. Do for myself. Take a breath and laugh with him. He is not a typical 35 year old, but he has never been typical, I have stopped with what I consider to be “toxic comparisons”, he is who he is and I love him dearly-regardless. This may be his very best self. If so I am okay with that. If you ask him directly if he is happy he will say: “Sure! why do you ask?” that’s plenty enough for me.
I highly recommend that for your own peace of mind and to bolster the mental strength you need to be there for your son, that you seek outside counseling for yourself. I still have a counselor today and my time with her is invaluable to me.
Your son may improve in ways that far surpass what my son has achieved, there is no guarantees, unfortunately, I wish there was, but, with you in his corner and him willing to get the care he needs, there is much to hope for.
I truly hope you don’t mind that I have shared as I have. I hope the sharing helps in some small way.
You are not alone. I wish you and your son all of the best outcomes in the days going forward.
He can solve a maths problem but can not make a cup of tea of hold a conversation or make a sandwich … and the voices in the mind seem never to be silent … im tired and sad today.