I need some honest views -slightly seething

[pingu73]

I genuinely need to hear whether I am just being touchy or have a case to be pissed off.
My son is 20 and has severe autism and now mental health. I’m divorced from his dad for 15 years plus and we have both remarried and moved on. Have had a tempestuous relationship but speak when have to all polite etc. I ended our marriage as I was struggling to cope with a 4 year old at the time and newly diagnosed 2 year old . Being only 26 myself at the time it hit hard and we just drifted.
As I say fast forward 15 plus years and all moved on.
So this week as son turned 20 my exh financial responsibility to him ended. Ours doesn’t and even though he is starting to get benefits in his own name they get hammered because he has 3 hours of care a week to go to a SN youth club so literally half of it is taken. To support him I work days and my husband his step father work nights.
So literally the day after his responsibilities end next morning I get a text can we have sons passport as were going on holiday!
For me the timing was inappropriate and I sent a very balanced text explaining so. Totally ignored.
The reason why I posted is because at the beginning of the year my son became extremely mentally unwell... a danger to himself and others and the nhs dragged its feet. I had no choice but to have him privately assessed and diagnosed with a mood disorder at the cost of £335 which exh didn’t offer to pay a penny
Also over the years even though he is on a very good salary £45 k plus ...he paid £137 per month under csa as his partner now wife moved in with him and of course they counted her kids as living in the house so my son got very little. For years I asked csa to reassess which they wouldn’t do however when we moved to child maintenance service they did and used hmrc figures so were accurate. Ex had begged me not to have them reassess and guess what he was ordered to pay double. There has been a significant change in their household that he failed to declare.
I feel totally used and am angry that we do the lions share of care but get no appreciation from his side at all. I will say his wife is lovely so I have no issue with her.
I just feel like he’s thought “oh we’re not paying for ds let’s use that money for a big holiday abroad” even though we’re knackered doing all the stuff that comes with looking after someone with complex SN.
He has him every other weekend and no more but tbh I think that’s to make a show of being the good father to the rest of the family as whenive needed help and asked for it he’s either declined or made out he’s doing me a massive favour.
Am ibu to ask for half the psychiatric assessment fee as I feel this is above and beyond normal outgoings and also Aibu to be pissed off???

Just wanted to update everyone
I have some amazing help and a very special phone call with a fellow mumsnetter
I can actually see light at the end of my tunnel and have hope for a different future to what I thought
Thanks all merry Christmas 🎄

I'm really pleased to read your latest update! Once I started to see supported living as a positive for my son, rather than an admission of my 'failure' as his mother, it was indeed a game-changer. Onwards and upwards!

I can actually see light at the end of my tunnel and have hope for a different future to what I thought

Wow @HerOtherHalf are you perhaps married to a man with an ex wife and children? What nasty posts.
OP I totally get where you are coming from. No married father would walk away from a 20 year old disabled son, but yet a divorced one can keep contact, go on holiday with his son guilt free while the lads stepfather pays for his clothes, food, utilities etc.
There is no other side to this story until the DNA Dad emails with his financial plan of ongoing support for his son.
@pingu73 my son has ADHD, ASD, a physical chronic health condition and mental health issues. He is living away from us with a partner and doing a degree which we never dreamed possible so we aren't stuck in your situation (his DNA vanished when I was pregnant) but his most recent mental health crisis left me having to instruct him, over and over, leading him through the steps, to get a taxi and go to A&E as he lives 300 miles away. For those people saying you didn't have to pay for private assessment, they clearly have no idea what it is like having an adult child who often needs more care than their 7 yr old sibling, as it often is here.

This is an interesting thread to read - our son is only 8 but we are already thinking longterm about his living arrangements once he becomes an adult, as we will be about 60 by then (late pregnancy). That's why we are currently battling with the council to introduce occasional respite, so that he can slowly become used to staying somewhere that is not his home.

Zeeboo thanks for that post cxx
Your right about paying privately when the only option was have him arrested because he’s a danger to himself and others he would have been cuffed as he self injures ie: hits his face. I couldn’t have done that Cos the wait in a&e to see an emergency psychiatrist would have been horrendous so we paid to get him assessed and treated quickly to save trauma to all of us.
There’s a few nasty posts by people with their own agenda but to be honest the support I have received and from yourself too is invaluable so I reckon it’s been one of those moments in life that change your life if you get me.
I am so grateful to everyone cxx

pingu - its bloody lovely to read that what started as letting off steam has given you different perspectives that may change the future for your family.

No one, absolutely no one, can understand the pressures of living 24-7 with a disabled child / teenager / adult unless they've lived or are living through it.

I'm very glad you feel there's a possible different future. I love my volunteer group and the members who belong there.. who knows, maybe your Andrew will belong to something similar one day ❤️❤️❤️❤️

This is such a heartwarming thread.

I don’t have a parents perspective but I have worked in a home for adults with learning disabilities and just want to agree a phased and controlled move into supported living is far better than a crisis move - I’ve seen the consequences of a sudden and forced move and the effects can last their lifetime. I also agree you will probably be surprised at what he can achieve in a different environment - I know parents and medical professionals were shocked at how independent some of our clients were after 6 months with us. A controlled move also allows you to take your time and find the right place for him too, rather than the only available place, which may not be the best fit for his needs.

I wish you all the best for the future - so glad you can now see you have choices that could be great for you all.

I would honestly rethink the having him home until you die bit of your plan. He’ll have no skills to cope once you’ve gone & SS would prob bus him off to a residential home rather than supported living. Generally I think you’re better off setting up the package you think your son needs while you still can - and putting in place the sort of things you need to do to hopefully keep it going once you’ve gone.

In terms of cash from his father it does sound as if he has been pretty tight - but again long term he will not be paying (& nor should you). Maybe ask for a financial reassessment - I know LA’s are clawing back everything they can but your son should be left with enough to live on. Is he getting the severe disability part of ESA etc? If you are having to top up his funding I would be having words with SS/the financial assessment team and kicking off with the MP & councillors to find out how they make the assessment (it’s like random black magic here). Is he claiming everything he is entitled to? It really doesn’t sound right that you are having to top him up so much. (I have a severely autistic adult son as well).

Oh looks like I missed pages - sorry (on phone & it keeps switching to a weird layout!)

Any decent parent would continue to contribute, that’s all really. It’s depressing and infuriating but as others have said you have to stay sane.
On the bright side it seems you are well rid!

I clearly only read page one! Apologies x

m.youtube.com/watch?v=DToejUka-XU

I hope that works most beautiful song ever

Sometimes I feel so lost
I don’t remember who I am or who I ever was

I don’t remember who I am or who I ever was

Oh, yes ... YES ... how well I remember that from the days before the new, better arrangements were put in place

But you know what? However grim things feel right now, there is light at the end of this tunnel - and by the massive mind shift you've already made you're starting to feel your way towards it. There'll be bumps along the way, but I'm convinced ... no, I know ... that one day you'll look back on this and wonder why you ever hesitated (in fact, you'll probably become yet another convert who urges everyone else down the same path )

In the meantime may you have the best possible Christmas, knowing that 2018 will be the start of a better life for the entire family