Help for my son

[ohnomeagain]

I am not sure where to post this thread, so please let me know if there is a more appropriate section.

My youngest son is 24. He lives with me. His father is in a residential home (schizophrenia) and his older brother lives in supported accommodation (autism and anxiety).

My son has complex mental health issues and is almost certainly neurodiverse (awaiting assessment, but may have to wait a long time). The family dynamic was very challenging as my sons grew up due to the additional (and often unmet) needs of my sons and their father.

As a result of his needs (which include extreme levels of anxiety and a profound eating disorder) my youngest has an extreme need for control. He becomes distressed if there is any change in the environment. I will not go into the detail but I will say that his need for control and behaviours related to his ED make it very difficult to live with him and to work from home. I state this from a place of love.

He is intensely socially isolated (does not work, has no social life and no friends, and is low contact with brother and father), and deeply unhappy (he cries every day).

He has a social worker, who has visited once, when my son was not there, and no contact has been made since then. He also sees a nurse once a week for an ECG (he has a very slow heart rate), blood test (which makes him cry) and weighing. A mental health nurse also contacts him once or twice a month.

I mention this because I feel as though my son would really benefit from living in some sort of supported accommodation, where he can try to manage his needs and enter adult life. I have mentioned this many times to various members of his 'team' (his team change all the time). My son has also talked about this.

Yet, nothing is happening fast enough. I am in my mid sixties, and I fear the dynamic of my son controlling everything and everyone will continue as I get older and perhaps less able to claim any form of autonomy. I fear the ED will kill him, or he will run under a car (as he has stated when he is feeling broken) to force some kind of a change.

He is such a vulnerable young man that I feel tearful even writing this, but I really fear for his future, and for mine to some extent.

Has anyone any ideas about what I can do?

Op this sounds like an abusive relationship

is he physically violent?

speak to his social worker

I don’t unfortunately. I have seen your previous threads and I really feel for you.

I’ve never been in a situation like yours but have dealt with Saws and found that those who shout loudest get the attention so, bearing that in mind, can you start calling the SW regularly? When I had an issue with an elderly relative I called the SW every day at the same time for an update until it was sorted.

I’m sorry, this sounds very difficult.

It’s not acceptable that social worker has never met your son. You could consider putting in a complaint about this and speaking to a higher up manager. I used to work in this area and it’s sad but true that ‘those who shout loudest often get’. So keep pushing at them and make sure they are fully aware of the difficulties.

Also if you haven’t already look for local support organisations such as carers support or mental health advocacy who may be able to advocate for you and/or your son.

I really feel for you. It wouldn't only be better for him it would give you the chance of a life for yourself. What a horribly tough time you have had.

You need to put pressure on social work. You will need to phone them every single day, sometimes twice a day.

Thank you for these replies, and the very helpful suggestions. I apologise for not updating sooner, I was caught up in some work commitments.

My son has an appointment with the social worker, but not until the end of June. I think the new needs assessment should be much sooner, but my son is happy with the appointment, and perhaps a month will give me time to help my son think about the positives of living in supported accommodation.

how did you get on? I hope there has been some positive change for you both?

Thank you for asking. Unfortunately, we are in a period of stagnation again. It seems to be quite a pattern once our children become adults. My son finds it difficult to engage (he cannot cope with changes to his rigid routine) and services are time limited and prioritise those who will engage or can access the provisions.

The eating disorder team have discharged him because he would not/ could not engage, and we have heard nothing from the mental health team for several weeks.

The social worker did visit and did a needs assessment. This must have been in June, and the support plan is extremely brief, only noting the need to contact the crisis team or emergency services if there is an emergency or crisis. The SW has now gone on maternity leave. My son does access Universal Credit now, which is something. His job coach contact him by phone because he has broken down in the Job Centre twice when he has had a face to face consultation.

His need to control, and his unhappiness remain the same. I keep sending him a little information on voluntary work, but he does not seem to see how this will help.

So, we are plodding on.

@ohnomeagain I'm sorry to hear you don't have much better news. Was there ever a time your son was able to function in a more 'normal' way? What about you? How do you spend your days? This must all be very exhausting for you. I am hearing that there are support/peer support type group via organisations like Mind though I don't know they are like in reality. Have you looked into any of them? I know your mental health times said to contact the crisis teams in times of crisis. Might this really be such a time if you can't get through to him at all? is he taking any medication and might it have stopped being effective?

If the social worker has gone on maternity leave then he needs to be reassigned to another social worker, that's totally unacceptable. Contact the social workers team manager every day if necessary to get this changed. Potentially they would leave him without anyone for the whole of the maternity leave and you just can't function like that. Make sure the needs assessment is redone because you're not happy that it's accurate. My step son has more minor issues but has essentially not engaged with services for 8 years and they the different services just let it happen. He just sleeps all the time.