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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To split up with DH because of the children

152 replies

CompletelyNewAgain · 10/04/2022 17:17

Both DC severely autistic and other disabilities. They scream and attack us all the time they are awake and between them that is around 20 hours a day.

We do get some short breaks and asked for social care respite last year. The respite worked for a bit but literally in the end it was more stress than it was worth and we asked for it to stop. Family are unable to help us anymore due to the extreme nature of their needs.

I just keep fantasising about splitting with my DH (who I love dearly and does childcare 50:50) so that we can have separate houses, share custody and complete breaks from the DC. I actually couldn't cope anymore so went upstairs and abandoned DH but the screaming is just continuing and it's raising my heart rate. I am in fight or flight mode constantly. I feel such a failure and deeply regret having children.

OP posts:
Sockwomble · 10/04/2022 18:32

"Op please don’t let this poster scare you. Speak to your social worker about residential schooling as it is an option of you go that route."

The OP's children are ks1. There are very few residential special school places for children of that age. My son's school has residential pupils and although in theory they take children that young, in reality they don't. Social care will only look at residential provision when they have decided no other option will work. You can have residential purely educational placements but you would need to fight for that at tribunal.

IncompleteSenten · 10/04/2022 18:37

@makinganavalon

Im not sure how this all works but is it possible to get money from government source and be able to choose your own carer and pay them? For example- I knew a family who had a child who needed a huge amount of care- they received funding and they chose the carer and paid them. They were really happy with the two carers they chose and they got to decide hours, activities etc and it wasn't different carers all the time. Does anyone know if this could be an option for you OP?
Direct payments? My youngest has that and we organise his support from his budget.
SavBbunny · 10/04/2022 18:38

Prior court is a group of ASD schools. Dame Shirley Shirley is the founder. Google it. They are a charity. Good luck.

Midlifemusings · 10/04/2022 18:41

I am not sure what your residential options are and I know that word can be very scary and full of shame, guilt, and failure for some parents but I used to work in a secure child / adolescent mental health and we would admit kids when it had reached such a crisis point that neither parents nor kids really had much quality of life. We had a residential program near us that housed kids in houses (max 5-6 kids per house) so it felt less institutional with 24 hour staff. We often recommended that program for parents as it allowed parents to still spend as much time as they wished with their kids, take them home or out for activities. It also gave the kids stability in a place with trained professionals who rotate in and out and therefore are recharged and better able to cope than someone trying to manage 24/7. The staff were pretty consistent and so both parents and kids got to know the team. In the end, as hard as it was for parents to make that decision, it actually made their family life much better and they all enjoyed their time together a lot more. Parents could go home and sleep knowing their kids were safe and secure but also choose to take their kids home or out or spend time with them at the residential house as often as they wanted. It also gave parents a chance to restrengthen other relationships in their lives and engage in other activities for their own well-being and at the end of the day, this made them healthier people who were better able to parent and enjoy their time with their kids.

I know to outsiders, they may not understand but I saw so many parents where the bulk of their time together was spend in crisis mode and being injured and taking turns staying awake and barely functioning. It wasn't good at all for the parents or the kids. No one has patience or energy or capacity that can outlast sleep deprivation and fight or flight mode long term.

Mariposista · 10/04/2022 18:41

How awful for you OP. Please look into residential care. You can't like like this. I am glad that you at least have a loving husband and you're not doing this on your own. You are not a failure - life has dealt you a crap hand of cards, and I really admire your honesty.

worriedaboutmoney2022 · 10/04/2022 18:42

So sorry to read this - I work with a lady and her son is 14 and since he was 10
Has been in residential care as they just couldn't cope and he physically attacked their younger daughter who was 6 at the time and they'd have removed her for her safety if they didn't agree to the residential placement

She said it was the hardest decision that she's ever made but 4 years one says it was the only solution and was for the best

Sending hugs and strength

HollowTalk · 10/04/2022 18:45

@AChocolateOrangeaday

For those with NT children who are suggesting however “gently” residential care.

You have no idea.

Can you explain?
duvetdayforeveryone · 10/04/2022 18:47

I would imagine it would be great if there was a school where they could be taken on Monday morning, and brought back on Friday afternoon.

cansu · 10/04/2022 18:49

I second the idea of looking at Priors Court. I wished I had done this with my ds earlier. His father wouldn't consider residential until we were literally on our knees but it would have been better if we had gone down this road earlier.

DragonOverTheMoon · 10/04/2022 18:50

They need residential OP. You haven't failed, you just aren't able to meet their needs and no one else would be able to in your position either.

BoodleBug51 · 10/04/2022 18:51

Have you ever asked your GP or medical team about medication to use at night?

Saved our sanity with a very defiant DC with ADHD who could easily survive on 4 hours a night...... however we couldn't. DH and I were nearly killing each other due to the lack of sleep and it took me having a sleep deprived accident in the car for our GP to step up and help.

Original poster
CompletelyNewAgain · 10/04/2022 18:56

@Poppinjay

We had to attend a number of 'child in need meetings' and regular lengthy sw visits despite them assuring us there were no safeguarding risks. It was humiliating the sw insisting that they checked every child's bedrooms repeatedly (even though it was always fine) and constantly having to 'safety score' ourselves as parents. There was a lot of paperwork. There was always a risk they would take the provision away or if we said we weren't coping enough then they would say there was a safeguarding risk.

It sounds like your case is being managed by the safeguarding team, not the children with disabilities team. Do you have a local carers network who can help you complain to social care and change the focus of their involvement?

@Poppinjay it was definitely the Disabilities team and they repeatedly told me and wrote in reports it wasn't a safeguarding case. It was a very weird experience. They asked us to score how hard it was and then warned us too low and we wouldn't get help, too high was considered safeguarding. Impossible situation. In the end I asked them the number to say. It turns out there was a literal 'right' 2 numbers to say!!!
OP posts:
Sockwomble · 10/04/2022 18:56

OP, if social care are not currently involved you need to get them back involved and push for better respite. It may be in your home to begin with ( and you have to go out for a few hours) but it needs to be established that you are not involved in doing it.

Catlady2021 · 10/04/2022 19:11

Just sympathy from me OP. It’s sounds so difficult for you both. And that’s an understatement.
But separating from your DH who sounds like a good man, surely isn’t the answer? Apart from separating from the partner you love, it would financially be hard to run two homes and child care would still be an issue with jobs presumably? I don’t know many people that can own they’re own home on their own, unless they have a small or no mortgage. Obviously everyone’s financial situation is unique to them.
I really hope things get better for you.

Kissifer · 10/04/2022 19:17

Op, I’m so sorry you are struggling. My dearest friends had a severely autistic child who became increasingly aggressive and violent and eventually had to go to residential care. They had tried to cope for many years, even moving house so their own parents could help with him, but the poor sons behaviour overwhelmed them all. He grew very tall and strong as a teenager.
They are the loveliest couple and their son was their only child as they conceived late in life. It was agony watching them go through this. The son has settled well into the residential home, so it is a solution of sorts, maybe the best in the circumstances.
Sending 💐 op, hope you can work something out x

LethargeMarg · 10/04/2022 19:20

Op don't be afraid to tell
Social services how tough things are . They may be asking things insensitively but they're trying to assess how you're coping and if they don't think you are they will offer more support .
Residential care is like hens teeth at the moment unfortunately. I work with LD lkids and some of our most challenging kids there are searches out all over the country for a residential space and there is literally no spaces and the kids are stuck in placements that are totally unsuitable but better than nothing. Its dire . However because of this social services should be doing everything they can to support you with the kids at home

Original poster
CompletelyNewAgain · 10/04/2022 19:24

Omg, I just had a lovely moment, separately, with each of my DC. Really nice cuddle each, very affectionate. Now eldest is screaming again!!

I once asked youngest's paed to order a full body MRI as I could only assume there was some underlying pain condition because I've never met a child who just screams all the time. Paed said no.

This is probably really outing but to my great shame I actually work with children with SEN. Why can't I understand my own DC??

They both attend SEN schools and have some hiccups there but nothing major. School is a different environment that I can't offer exactly at home. School don't have to give them meds, deal with bedtimes, have to cook and do childcare. They can deploy staff in a ratio of more than 3:1 in a crisis situation.

It's a tough one because it really is the highest of highs and lowest of lows with them. The highs keep us going but my god the lows are something else.

OP posts:
PixellatedPixie · 10/04/2022 19:24

This is so unfair on you ans your DH and DC and is completely soul destroying. Isn’t there some sort of medication that your DC should be on which would make them happier in themselves and easier to handle? It can’t be great for them feeling angry and attacking you and your husband either?

LethargeMarg · 10/04/2022 19:33

@PixellatedPixie

This is so unfair on you ans your DH and DC and is completely soul destroying. Isn’t there some sort of medication that your DC should be on which would make them happier in themselves and easier to handle? It can’t be great for them feeling angry and attacking you and your husband either?
I'm sure op will have explored this route but medication is not going to solve a severely autistic child's behaviour . The medications that help children with anxiety that cause this kind of behaviour often have risks of side effects so have to be used very gradually and carefully . There's no magic wand with learning disabilities and medication is not going to cause huge improvements. Historically there would have over medicated those with challenging behaviours which caused a lot of other issues and wasn't in the child's best interests Op it's very different working with LD kids and having your own children don't be hard on yourself with that
Madrenetterhere · 10/04/2022 19:42

I have three nt healthy children and no support other than my husband. I have fantasised often about us splitting up so that I could have a break. So I totally understand this feeling. I'm comparing my three to your children I just meant to say I relate to the desire to split in order to get some relief. I don't have any advice I just want to give you a big hug. Sending love xx

Madrenetterhere · 10/04/2022 19:42

I'm not comparing I meant to type

PumpkinPie2016 · 10/04/2022 19:43

Lots of sympathy from me OP. You are dealing with an exceptionally difficult situation Flowers

Working with children with learning disabilities is very different to having your own - you are with them for a shorter period of time. My mum used to work in a home caring for people with acquired brain injuries. One man she cared for would scream a lot of the time when awake. She could cope because it was 8 hours at a time and then she got to go home to peace and quiet.

You don't currently have any respite and it's no wonder you are finding it hard. It sounds like you were treated very poorly by the social care team Sad it sounds like you desperately need respite of some sort. Can you get in touch with social care again? Please don't be afraid to tell them how much you are struggling- you are not bad people at all, you need and deserve support.

As an aside, if you do consider residential school/care in the future - it is not a sign that you have failed in any way. These places are staffed and resourced to care for people like your children in a way that a family home isn't.

Soozikinzii · 10/04/2022 19:43

I taught sen for many years .So I do understand how difficult this is for you and DH .I am sure you are entitled to respite care . You should get help to complete any applications needed . You really must get the help for your DCs DH s and of course your own sake . You have to look after yourself so can be strong for them .I just hope you can get the help that you and your DH deserve.

lonelySam · 10/04/2022 19:45

@Summersolargirl

I’m so sorry op, that sounds hard. How old are the children? I’m not even sure how to ask this, but would residential care be something to consider? Even if just for respite? Is it even available? I am not sure splitting up is the answer, as coping alone maybe too hard?
I came here to say the same thing and was wondering how to phrase it gently. But I was thinking residential care if possible.
Midlifemusings · 10/04/2022 19:46

The underlying cause being pain is a good one to explore OP. I once saw a young girl who screamed for ages and it turned out she had a tooth abcess. Have their doc check their ears for infection too - that is another very painful area when inflammed.

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