Step-parenting and SEN

[AutumnAsh]

DH and I have been together 17 years since my DDs were 7 and 5. Exh was violent, an alcoholic and mentally unstable when we split up and has never been an active parent which suited him fine.

DD2 has severe learning disabilities and requires constant care. She is now nearly 22. DD1 was diagnosed with autism in her teens, struggles with processing information and has had severe mental health issues, including being an inpatient at CAMHS at one point.

Obviously this has been a lot to ask of a step-parent where the father has been largely absent and I know that I was very lucky to meet someone willing to enter into this situation. I have always tried to minimise the impact on DH by doing almost all of the caring and DH retains his sanity by having hobbies for himself.

However DH has been pressurising for some time for both DDs to move on. DD1 is trying to advance, has a small part time job and also is getting work experience by volunteering in an office. In time I hope she might be able to get more substantial employment but it is a big ask for her. DD2 will eventually need to live in supported accommodation but my experience of this for a small number of people I know is not good. The vast majority of my friends are, like me, still looking after their severely disabled children themselves. This remains the best place for her at the moment while I am still able to do it physically.

DH, however, seems to have reached a point where he has had enough of it. He says no more holidays with the DDs in tow. I have accepted this. We get a good amount of respite. He also makes a big point out of not being their real father and where is he in all this?

I understand he wants to prioritise us and I always try to do this when we have respite or an evening carer. We get on great on our own.

Is anyone else in this situation or what do you think is reasonable? I am feeling really got at over wanting to do the best for my daughters. If I was forced to send DD2 to a residential placement before I am ready, I would always resent DH for it. I know DD2 is 22 but her mental age is no more than 2.

Bump

My experience isn't the same as yours but I wanted to post.

I feel you're right about resenting him if you do help DD22 move on too fast.

I can also understand from his POV that he's exhausted. I'd be surprised if you're not, too.

Just sending some love x

Part of doing the best for your daughters is to prepare them for when you are no longer here. Why not start the process now? You don't know the future, or even if you'll live a long, healthy life.

@N0tANOoDl3He4D thank you - pretty tired on the whole!

@TheInterceptor - you are right of course and we are trying really hard on this with DD1 - progress is just so slow. Little to no state services available to help and we've accessed most of them!

With DD2, if a residential placement was going to be in her best interests at this stage, I would agree. However, most parents seem to avoid them here until they have no alternative as the care just doesn't seem great. I know a parent whose son moved out because he wanted to - but has already moved home twice and the parent has to visit daily to ensure basic care takes place eg teeth cleaning! One of our carers said she sees that young people moving into residential homes lose their spark.

You are right on life expectancy - I have health conditions and who knows how long is left?

This is very difficult. My dd is 18 and has similar level of needs. I feel similarly that she would be better off at home for a while yet. However there is no doubt that it is also a big commitment. My feeling is that my dd needs to move out in plenty of time before she actually needs to. I am aiming for mid twenties as I think this is around the time her NT peers might move out. I also want to plan it carefully so that she has the right package of support.

I think you have to prioritise your daughters. As you said your DD is functionally no more than 2, so needs to be prioritised like a 2 yo.
It sounds like DD2s extra needs were clear from the start of the relationship so your DH knew what he was getting in for, knew that step parenting and high needs from children wouldn't end at 18.
Its sad, but you need to have a proper conversation with your DH, lay out your wants and priorities and listen to his. If they can't be reconciled without hurting your kids, then the relationship needs to end. Its Ok to want different things, and you both need to do what's right for you.

OP

Separately from the DH issue.

OP - you have to remember that you are a person too. A full one, not just a support human to others.

@cansu yes I had mid 20s in mind too with preparation starting 1-2 years before. At DD's day centre though, most of the young adults are still with their parents right up to age 30. I suspect the local provision here is poor.

@negomi90 Sadly this may be true if we can't reach a compromise where DH is happy. I want to stay together but he has to be happy. It's so difficult when we are very happy together on respite weekends alone.

@SeulementUneFois Thank you - I think I've become primarily a support human after over 24 years. It's a hard habit to break partly because it suits my personality. In my day job I work in the charity sector in a support type role (not directly client facing). But important to remember that I too have wants and needs! In this situation everyone has to compromise, which, as DH says, means no one is 100% happy.

I had a cousin in a similar situation to DD2. My aunt and uncle wouldn’t have her moved from the parental home and eventually it ruined all their lives. She never had the chance to thrive and gain some level of independence. By protecting her, they stifled her. And they had no life of their own.

Are you involved with adult social services? Surely there are a range of assisted living facilities you could look at? Further afield if the provision close by isn’t good?

DD1 needs to access all the benefits available and you need to work with her to gain some independence.

I have some sympathy with DH because he can probably see time ticking by and no end date. Would it help to put an aspirational end date in place that you could work towards?

Your situation is terribly hard and you want to do the best for your DC, but can it be that you can’t see what that ‘best’ would be? Good luck.

This. It shouldn’t be a case of what your partner needs versus what your children need. Where are your needs in this equation? You have given so so much. What would feel right in this moment for you?
xx

We are not at this stage yet but have two DS who will never be able to live independently. I think if we had one it would be different but with two of them it sometimes feels our whole lives are devoted to them. We haven't been out in the evening together for 3 years!

We have already started talking about adulthood and I think for our own sanity we will need to look at residential care. It's all wrapped up with what will happen when we die as well, eg them not being able to express pain or illness.

I would also say look at different options. I am intending dd to have her own tenancy and carers. I am not intending her to be in a residential home. I want her to have her own home.

Thank you all for encouraging me to start looking at future options and also to think more broadly of how this might look. Also to look at my and DH's needs and wishes as well. Very helpful x

Tomorrow is never promised, thing is what would happen to your girls if you died tomorrow? Would your DH advocate for them so that they can access the best supported living possible? I think you need to sit down with DH and have a proper conversation with him about everything.

I'm in that position. It's easier for me as my husband is the biological father. It's not what we envisaged. We thought they'd grow up, leave home, we'd be empty nesters. That may never happen. We're generally fine with that, and arrangements are in place for our untimely deaths, should that occur. We are just seeing what is right at the time and going with the flow as things develop. Maybe you can get respite time to get some weekends with just DH as a start?

There’s no harm in looking but I think ‘assisted living’ places are actually pretty rare, DD2 may qualify but I’m not sure your eldest would

All I’m reading is you are caring for everyone and balancing everyone. They are still quite young and I assume even if they move out you will still be doing a higher than ‘normal’ level of care. Having sen children puts a strain on relationships there’s no doubt about that. Does your oh support you though? Who’s looking after you in all this? It has to be harder doing it while shielding him from it than doing it without him? I would resent him if he made me push my children out, especially if it was for his selfish reasons rather than concern for me or the children.

@BungleandGeorge DD1 wouldn't need to be in supported living. She should be able to live independently - one of the main issues is having adequate income for this to be possible however.

@Mumof4alsoabonus thank you. DH does help a bit but I do the vast majority of it. I feel his motivations are mainly self focussed. I have to do what's right for DD2 because no one else will! I accept I'm not getting any younger (56) and so need to start looking and considering all options.

I think DC (especially with additional needs) come first, forever. Obviously this doesn’t mean being a pushover, but your children still need you and they shouldn’t be forced to leave their home until it’s in their best interests to do so.

I know mumsnet has a thing about stepparents not being expected to do any childcare, but I can’t imagine not supporting the person I love in raising their children.

I am in your DH’s position, with a DSS with similar needs by the sounds of it to your DD. He will never live independently. Fortunately the Mum is still on the scene. I wouldn’t live with my DSS FT. I would rather divorce and I have made that abundantly clear to my DH, DSS’ Mum and social services when they have suggested it as a solution (in practical terms they’d just like the opportunity to exhaust my DH and I before admitting residential care would be the better option).

A factor you don’t mention but that is relevant for me is my DSS is very violent and volatile. To everyone including his half siblings and me. It comes out the blue. I feel constantly on edge and have been injured by him frequently, as have other children and his carers. He is now taller and weighs more than me. We frequently have to clear the room when he starts and move the children to safety. I won’t live with the fear of that in my own home and I won’t have it for my children. I tolerate it to facilitate contact but even social services recommend he is kept separately most of the time.

I actually feel my DSS’ Mum and DH aren’t doing DSS any favours by keeping him at home. His world is growing smaller as friends and family withdraw and neither parent can devote their time and attention to him because they both have other children - which makes his behaviour worse. Both parents are exhausted by having him - to the point respite is recommend every day. With his behaviour I envisage there being a crisis that leads to his removal. I think it better that that happens by a conscious choice and be better prepared than a decision that’s taken from his parents because it’s the lesser of two evils.

It doesn’t sound like much in your situation is going to change other than your physical health and I can understand why your DH doesn’t want to wait until you’re too frail to be able to enjoy your life together, truly without the pull of your DD. It seems totally reasonable that he wants to holiday as a couple. What strikes me is that your and his whole life will be devoted to care and actually your DD (with respect) probably isn’t all that invested in who is delivering her care.

I can definitely see your POV, but wanted to share mine as both are obviously unique and competing rather than one being more important than the other.