When they grow up?

[stepmothertobe]

Hi everyone. I am new to this board. I hope it’s ok to post here. I am the partner of a man who cares for his severely ASD son, but not the parent.

I hope I’m not offending anyone or in the wrong place. I am not caring for a disabled child 24-7 which many on this board will be doing. But in the future I might be and I don’t have the expertise to know what to expect or the authority to make plans. If you can help I’d be so grateful. I don’t know where else to go but if you do please let me know.

My DP is divorced w 50-50 childcare. I don’t live with him currently but he anticipates this for the future. His DC has huge emotional and behavioural challenges and needs. Meltdowns can be violent. At special school with EHCP. School v concerned about defiance and have said that if this ODD is not sorted by the time he is 14, in 2 years, it will be entrenched and he won’t manage exams or post-16 study or post-18 employment. Confirmed by independent ed psych.

So I can see this DC potentially becoming a NEET. He can’t accept authority or command.

He can do well with a lot of support. DP agrees things with him in advance around desired behaviors with desired, tangible rewards. I’m taking the DC to the seaside next week by myself to give DP a break and we have all agreed and signed a ‘good day’ contract with an hour by hour timetable. The DC has happily memorised it. He really wants to have a good day. Still, I can’t see a technical college or a construction site manager being willing or able to scaffold him so intensely.

In the boy’s adulthood if necessary I think DP is likely to do most of the daily work. Mum is physically disabled with a degenerative disease and manages 50pc of childcare with daily support from her parents who will not always be around. Her parents are comfortably off, as is she with generous maintenance from DP and max benefits and no mortgage. Maybe she/parents have put money aside for future residential care for mum and DC. I can’t be sure.

DP also does not discuss child’s post-16 future with me. If I mention it gently, he goes quiet or changes the subject. He can’t seem to process it. Or he’s too anxious about it to address it. He’s already processing a lot and the day to day struggle is obviously exhausting. To my knowledge he and the mum have never discussed it.

What DP does discuss is his rose tinted lovely vision of us getting married and living together and travelling the world ‘after the kids are gone.’ (My child is also ASD but they are doing well in mainstream and likely to happily pursue special interests at uni and for a job.)

I am unsure that DP’s DC son will ‘go.’ What can I expect please and how can I guide and help?

I felt really vulnerable writing this and ever so anxious I may have annoyed someone. I hope not, and thanks so much for reading.

[Headfirstintothewild]

Sounds like DSS’s EHCP needs reviewing.

EHCPs can last until 25, or 26 in some cases, so that can continue to provide the support required whether that’s at a specialist college (which could be residential), mainstream college, supported internship, or a bespoke package...

If, as an adult, a care or residential placement is needed (depending on needs) that can be funded by social care or continuing care funding. Has DSS had a social care assessment? Has DP and his ex had carer's assessments?

Like many SEN related things, it can take a fight to get the right support.

Rather than ODD, has demand avoidance related to DSS’s autism been considered?