Judgement Appreciated; Advice Welcome

[ontetwo3]

Just a little context: my family are neurodiverse and/or have complex mental health issues. Eldest son (24) lives in supported accommodation after three years of residential care, and is making slow but steady progress (voluntary work, short courses and so on) towards independence. Husband is in a psychiatric hospital at the moment, awaiting transfer to a residential care home. He has autism and complex MH needs. We have seen the home, it can meet his needs and is in easy commutable distance for me. We are just waiting for funding to be approved.

My youngest son (22) has complex MH needs and is probably neurodiverse like his father and brother. However, he avoids support. He has agreed to attend an appointment, after being seen at home by two fantastic nurses, to have an ECG with respect to his eating disorder. The appointment is in July.

I hope this will be a step towards him accepting more specific help for his MH. He has had mental health issues around extreme anxiety since his early teens, and has complex cleaning rituals (lovely to have a sparklingly clean house; awful not to be able to put a cup down without it being whisked away and the table examined for marks). I just hope, in the absence of support, that the low arousal non-judgemental approach will help him gradually accept help.

My problem is that my youngest son will not claim any sort of benefits. Twice, I have helped him reach the point of attending an appointment, but he really 'freaks' when it comes to attending, and so far no-one will attend the home. We have submitted a claim for PIP, but he has insufficient evidence to support any claim.

I have encouraged him to consider some low key part time employment or voluntary work, but I am met with blatant refusal. Ultimatums do not work and usually escalate his anxiety to total shut down.

I work from home and bring in a salary that is stretched at the moment, but money is not as important to me as seeing my youngest progress in some way.

To be honest, I just feel like a bit of a failure and worry about my youngest son's total dependency on me.

Congratulations if you have reached the end of this essay, but any suggestions are welcome.

You ate bloody amazing yourself. I can't begin to imagine what you've been through.

What I would suggest though is moving this over to the SN Chat section. I've see.n a couple of threads on getting young adults to work or claim on there in the past

no advice to offer, but a standing ovation for being amazing.

Seconded.

Thank you for this support. I feel a lot better now. My husband's social worker thinks he will move to the care home this week. This will make it easier to visit him.

Just a quick update. My son went for an ECG yesterday. The ECG was 'abnormal' and it may be possible that he has experienced a minor heart attack. He has complained of chest pains, but thought these were due to asthma and the consequences of his ED. I think his GP may be contacting him very soon to discuss the results in more detail.

On a positive note, things were obviously not so serious that he had to be rushed into hospital, and he seemed to get on really well with one of the male members of staff who is going to arrange weekly sessions around his mental health. I am very concerned, but I really feel he is beginning to engage much more with people who may be able to help him now. What is more, if he receives advice from someone outside the family whom he respects, he may actually take it.

My husband moved into the care home yesterday. The move was calm, and the manager of the home called me to reassure me that he had arrived safely (I had already called my husband, but it was lovely to be contacted). I am going to see him, and see our eldest son today.

I'm so glad that the finding was granted fir your DH and that your youngest DS is at last moving towards getting some support. I really don't know how you've managed

Op, you’re doing all the right things. Your son is making progress albeit slow progress. Trust your instincts and keep going, you’re doing an excellent job under very challenging circumstances.

Regarding benefits - you need to apply to be his appointee, this would enable you to speak to DWP on his behalf.

Thank you. My husband will have a financial assessment to see what contributions he may make with respect to the cost of his care.

I was appointee for my eldest son. He now can manage his money on his own. My youngest just needs a little more time to come round to the fact that he really needs to claim benefits and then I can apply to be an appointee and deal with the appointments and paperwork.

Once again, thank you so much for the support.

Hi can I please ask how you got the residential and supported living for your eldest son? My brother is in a similar position and in need of help, we have just contacted the council. Did you pay for it? Any advice appreciated

Hello Dearly89,

It was a long process which is probably not typical (thankfully). The Carers UK group would have more detailed information.

However, my eldest son developed serious mental health issues at about 13/14 years of age. He has autism and required 1:1 support at school, but it became clear that he was really struggling at home and at school.

By Year 10, he could not attend. My youngest also began to experience extreme anxiety and he also stopped attending school. He was diagnosed with GAD.

So, we had two very 'disturbed' teenagers at home, I tried to keep going out to work, my husband could not cope and children's social services became involved.

My eldest was admitted to CAMHS unit, several times and discharged for the last time when he was 17. At 18 a social worker from Adult Social Care became involved and we managed to find the residential provision.

The care and support was paid for by social services, with a small contribution from Health. My son also made a contribution from his benefits (after a financial assessment).

It is adult social services who would probably be the best people to approach for a needs assessment and so on.