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???

OP, you are doing a brilliant job.

You sound like a brilliant person BTW.

Yes, of course you're right about your ex - and you would be even if you thought it was all about the money too. But the sad thing is you of all people know it's about the stuff that matters a whole lot more than money.

Your ex hasn't done his job. He's never going to. That is the hardest thing to realise and that is what you will have to accept. You will feel better when you have accepted it, cold comfort though it sounds now.

Let him take DS on holiday, get a break, and don't let ex into your head any more than you have to.

I think I can see your point. Your ex thinks he is doing a nice thing by taking your DS on holiday and meanwhile you have had most of the financial obligations and caring responsibilities for all these years. And will continue to do so. YANBU IMHO.

I absolutely can’t walk away from him. I adore my son and the thought of him living away from home until he wants to I just can’t do.
Don’t think either of us are ready yet hope that makes sense

It makes perfect sense and it's absolutely your choice to make, but I really would advise at least looking at what sort of supported living might be available for the future

I've been where you are now regarding our DSs, and it's worth considering what will happen when you're no longer able to care for him and what the impact would be on him if he had to move home in a crisis, rather than in a measured way while you're still able to influence things

By the way.. I also wanted to say that your partner sounds as incredible as you do..

I'm so glad you have that support.. you must be a pretty amazing person to be with - glad you've got a very strong relationship with a good person to help you (as your ex obviously won't 😡).

Also to say I volunteer at a centre for adults with learning disabilities.. at the moment our youngest member is 20 and eldest is 68.

All the members Live in various forms of supported living environments approx 3 miles radius from the centre. They are incredibly well cared for both practically and emotionally, and the social diary is jam packed for those who want it.

I know you and your son are not looking at this right now but there are some amazing places out there as / when / if you choose to go down that route ❤️❤️❤️❤️

I can offer no advice on your particular set of circumstances other than to ask you to consider your son's future when/if you are no longer able to care for him. Long story short: my brother and son both had severe learning disabilities (genetic). My mum and dad kept my brother at home with them for 58 of his 60 years; it was only for the last two years of his life that he had any real social life and friendship. They could no longer look after him and Social Services intervened.

I didn’t want that for my son, so started to look for an assisted living place for him. It was an incredibly difficult thing to do, and it took him about 3 years before he was really settled - but he's having a wonderful time now! I felt bereft, almost bereaved: I hadn’t realised just how very draining having him at home was, 'challenging behaviour' and all.... until it stopped. (Best of all, no more forms to fill in on his behalf 😃)

I know of at least one case locally where a mum and dad had their disabled son live at home with them 24/7 - no holidays without them, no respite. It was terrible to see how devastated he was when his mum died; his father just could not cope, so he went into residential care 'cold'. For your son's sake, please do take some time to consider his future.

Hang on in there Pingu.

All the members Live in various forms of supported living environments ... They are incredibly well cared for both practically and emotionally, and the social diary is jam packed for those who want it

Tell me about it ... I often think my son has a better social life than I do!!

The hours that he receives in support will be reviewed after he leaves college. He should be awarded a personal budget which could cover things like external support, day services and respite.

This might take some of the weight off your shoulders

It was terrible to see how devastated he was when his mum died; his father just could not cope, so he went into residential care 'cold'

And yes - this is exactly the sort of scenario I meant, when saying it's worth planning for the future rather han letting things drift until a crisis arrives

Wow guys those of you making the point not to leave looking at alternative s until a crisis have a real point and I will certainly start to think on that
You guys will know it’s a delayed empty nest thing and like first day leaving child at school multiplied by infinity
I do need to consider what happens if we become ill and can’t cope...
You do make sense xx

Pingu, I thought it was actually much much harder than I was prepared for; I was ready for the 'empty nest/first day at school' bit, what I hadn't bargained for was the feeling of being absolutely superfluous all the time.
People used to ask me what I was going to do, now that I had 'nothing' to do... to shut 'em up I told them I was having a gap year. 13 years and still counting; rather a long time for a gap year!

Whatever yo think is best is what I agree with. You sound like a very caring mother and your ex is a dick.

I see where you are coming from op.
I think it is disgusting what your ex has done.
He isn't a good father, good father's support their dc financially and emotionally.
I have no advice to offer other than what's already been said.

I am very blessed to have an amazing husband who really does step up to the mark. He taught my son how to use an electric razor and happily does things for him
He’s pretty special xx

You guys will know it’s a delayed empty nest thing and like first day leaving child at school multiplied by infinity

You couldn't be more correct, pingu, and you're being extremely wise to at least consider future care for when you're ready. I've got a couple of friends in a similar position who took years to come round to this, but now they've gone ahead with it they honestly feel it's the best thing they ever did

And, you know, don't be too convinced that your lovely DS will never be able to do anything for himself. I felt exactly the same way, and of course as his mum I was used to doing stuff for him ... after all that's what mums do ... but now he's in supported living he's enjoying a life which frankly I'd never have believed possible

I obviously don't pretend to speak for your situation, but though I did it all with love and the very best of intentions, I do sometimes wonder if the level of care he had at home actually held him back from reaching his potential ...

No I get it puzzle and this thread has become invaluable from everyone’s experience
I started out angry and frustrated and now I’m listening to wise counsel
My son is Andrew the most beautiful gentle soul you wil ever find
He’s 6 foot of eating machine and a joy to behold.
He’s very disabled but my has a wicked sense of humour .
He’s taught me so much in his 20 years and he’s a blessing
What I love is his sister a few weeks ago is 13 and veggie and was whingeing about being fed up of mushrooms 🍄 ...we always think he’s away with the fairies 🧚‍♀️ if you get me and then bless his heart he popped out with “I really love mushrooms 🍄 “
We all stopped talking and stared
If you’ve ever watched green mile the chap with the mouse reminds me of my Andrew x

but though I did it all with love and the very best of intentions, I do sometimes wonder if the level of care he had at home actually held him back from reaching his potential

I've wondered the same thing.. I was amazed the first time I rang to speak to one of the support workers and my son answered the phone.

Andrew sounds just lovely, pingu, and I so know what you mean about "away with the fairies" The thing about the mushrooms is interesting too, and perhaps suggests there's "more going in than coming out" if you see what I mean?

I used to "translate" for my lad all the time because I honestly thought he couldn't do it, but here's the thing ... since leaving home and having to do more, it's incredible what he can actually manage with support

And if it sounds as if I'm trying to encourage you - you're right, I am!!

I was amazed the first time I rang to speak to one of the support workers and my son answered the phone

Tell me about it!! With mine, we were actually at a "support discussion" at his flat when the phone rang. I expected the staff to answer, but no - he did it himself, told the caller "I'm in a meeting" and promptly put the phone down

"In a meeting" for heaven's sake?? I didn't know whether to laugh, cry or suggest he try for a job at the council

Andrew sounds incredible OP, as does your husband ❤️

Puzzled .. the members at my centre can barely fit all the activity in!!! It's often a balance finding something that everyone will enjoy / be able to do or take part in in some way as the members are generally physically able but otherwise quite disabled..

Lots of the members come from the same 3 or 4 supported living zones so are very much like family to each other (in both the good & bad ways!!!)

puzzled - love that.

I have re read everything you all have said and wow it’s been invaluable to hear other parents experience of supported living that’s what as a SN parent of someone at this age I was missing. I’ve always thought that I’d be a doddering old lady trying to manage but I’m beginning to see that some point in the future he may have a more fulfilling life with more help .... I can’t tell you all what a mind switch this is for me.
I’ve always thought oh il happily give my life to him but I’m beginning to see that is not what’s right for him.
I’m suffocating him with love and at some point I need to let go.
I truly believe you’ve helped me with the first steps on that journey.
I’m sat here a bit shell shocked but so grateful for the support xx

Pingu I think any parent would feel they could give their life to their child, we love them and want to protect them. Up until recently I would have said that my dd will stay with me until I die but now I have seen what support is out there I feel differently. I recently put my dd into a sn school, I struggled to find a school for her and had to consider residential, luckily I found a school out of county and didn’t have to go down the residential route but it is something I would consider after visiting an amazing residential school. My dd’s Autism probably isn’t as severe as Andrews but she has no safety awareness and isn’t very verbal. After seeing what they do at residential units I can see how it could benefit her, learning some skills which she will need when/if I’m not around anymore. She’s now learning some of these skills at her new school which is great, she’s learning to cook, how to make a bed and wash her clothes. Eventually if she moves to residential she will be sharing a flat with 2 others, would have her own kitchen to cook in but would also have a carer with her. I’m not sure that she will ever be fully independent but the thought if her being semi independent would be amazing.

Pingu so glad this post that started as a valid rant against your useless ex has turned into something that has given you some real food for thought.

You sound like an amazing family. My experience of adults with learning disabilities is limited to my volunteering but I see very comfortable, cared for people who belong.

It will be a hard route to go down but I think you're able for that ❤️ And you and your son would reap the rewards of the extended family that your son would develop (on whatever terms he chose).

Your ex will never have that x

What a lovely thread!!