Divorce - disabled child- Advice please?

[SENSummer]

My marriage of seven years has ended this Christmas. My decision but STBXH has been emotionally checked out, difficult and distant for years so we’ve been on the verge a few times. It’s definitely over now.

I’ve held it together thus far because we have two small children. 4yo DD and 5yo DS who is extremely high needs ASD, profound learning disabilities, ADHD, non verbal, PICA and also massive for his age. Wears 9-10 clothes and weighs 35kg about 2/3 my size already. He is very difficult to care for. Honestly it’s horrendous he’s destructive and violent and just shrieks constantly whilst destroying everything he touches.

I’m scared they will make me take him and be resident parent. I don’t want to be. I can’t win against him in a fight anymore and all of his basic care needs are a physical fight. I also can’t deadlift him off the floor, which is a lot of what parenting him requires.

STBXH has been working long hours as a doctor throughout our marriage but does physically help with DS when he is here. He is much bigger and stronger than me and can still just about overpower DS when needed although worries he will hurt him. He has been deeply depressed for a long time and any periods spent alone with DS send this through the roof.

DS is in a specialist school with 1:1 care and has a small social service package. We have appealed multiple times for more or for him to be put into care as we just can’t manage him. We keep putting up bigger and bigger gates/locks around the house but he climbs them/breaks them and nothing can stop him.

I was forced out of work to be his carer even though I never wanted to leave work. I’ve done everything for DS for years fighting for all the medical/therapy/council help and his socialist school place but nothing made a difference. I’m scared for mine and DD’s safety and future if we end up in a house just us and DS. I cannot manage him or meet his needs and trying has such a detrimental impact on DD.

I don’t want to be his resident parent but I know that DH won’t want to either. He says he won’t be able to work which is true but that’s the situation I’ve been in for years so I don’t think he’s entitled to carry on like normal once we are divorced and I’m not his support act anymore. I worry what will happen and that they will make me have DS. I’ve spoke to social services and they said they don’t know what will happen.

I would of course share custody and if DH did have DS I would give him plenty of respite. I highly doubt the same would happen if I become resident parent.

if you’ve been through this please help!

@ThePieceHall I had thought about fostering when my kids are grown up but this sounds like a nightmare.

I was actually going to say similar. My autistic child isn't nearly as complex, but did show a massive improvement in behaviour when his Dad moved out and things settled down in the house overall.

I would push for more help from CAMHS or whatever pathway you have to psychiatric help. Has he had any genetic testing? 35kg for a 5 year old is way off the chart for normal, so you could ask for testing for e.g. Prader-Willi syndrome if you haven't already. Hormone testing, possible medication could be useful too.

Is there a local carer centre that could give support? You do also need to consider the financial implications e.g. if you ended up with 40:60 care you could possibly struggle to work but also need to give your ex maintenence, and the DLA etc for your child.

I’m not going to give specific advice because my situation was very different to yours. What I will advise is, don’t listen to SS, listen to your lawyer. It looks like you’ve been put in touch with the very best (sadly my lawyer passed away or I’d have given you his details). Stick to your guns, don’t be bullied or intimidated, get the best legal advice you can - whatever it costs will be worth it. Good luck xxx

Well, I could never recommend spending 21 hours in a police cell! And being ‘processed’ ie full body search, DNA swab, mugshot and fingerprints. It was hell. The problem is the system stinks. Social workers, the police and LADOs (local authority designated officers) know that there is a high preponderance of lying and false accusations among care experienced children and young people. To be fair to the kids, the vast majority will have foetal alcohol spectrum disorder whereby ‘confabulation’ or the inability to differentiate between fantasy or fact is very common. Still, we go through the motions. Our kids get cross because we tell them off, so they make accusations or allegations to even up the score. They don’t understand the consequences.

@2x4greenbrick in the first part of the post where I was responding to you I was referring to agency care staff.

Yes, care staff but not ‘specialist foster carers’. The latter I did not mention.

@ThePieceHall I'm not sure if you quoted the wrong post, I haven't mentioned that organisation, nor does our LA expect our foster carers to sign up to them?

@2x4greenbrick I responded to you where I tagged you, my point beneath was on topic but separate. If you have details of these amazing agencies that can guarantee good, regular staff im sure many LAs would bite your hand off. As would the parents looking for the same to use personal budgets.

@Hibernatingtilspring I pointed out I wasn’t taking about foster carers because despite me posting I wasn’t posting about them (my post was in response to another poster mentioning carer, not foster carers) you replied with “…have good reasons not to become specialist foster carers so just suggesting that if the LA pays enough money it'll happen just isn't true.” That is why I reiterated I wasn’t taking about foster carers.

A higher rate of pay, sometimes significantly higher, and sometimes coupled with other things such as a higher ratio, attracts more staff. For those using agencies, it also makes agencies more willing to be amenable. Nowhere did I say increased funding was the whole answer. Quite the opposite.

Ah, just a (lateral thinking) suggestion not to. I don’t mean to be rude. You will think I am. Parenting does not exist in a vacuum. Fostering does not exist in a vacuum. Adoption does not exist in a vacuum. Disability parenting is bloody hard work. Just because something someone says does not tick a box on your clipboard doesn’t mean that it’s not valid. It doesn’t mean it’s not happening to other people. Again, I’m not being rude and hopefully not insensitive, but are you neurodivergent? I only ask as I have two care-experienced neurodivergent children who would respond exactly as you have.

Thank you! I can never recommend Damien Dobson or Michael Charles highly enough. Sorry, this is a shameless bump for anyone with similar issues who doesn’t have the time to read through the thread.

I think that’s too dismissive.

There are many people, like my partner and I, who are well aware of our rights, but have neither the time or energy to enforce them all the time.

It’s not deciding not to pursue, it’s having the capacity to do so.

I think what the LAs bank on isn’t whether people know what they legally are obliged to do, they bank on them going away to cry somewhere else because they’ve ran out of energy to fight with them.

@ThePieceHall ah that makes sense, sorry I just didn't make the link! The Fostering Network isn't particularly big in my (geographical) area though it's useful to be aware of people's experiences. I don't think you're rude, a little direct maybe, but understandable in the context of your experience as an adoptive parent.
Allegations from children in foster care are really difficult, in my experience most social workers are well aware of why children might make a false allegation, also that for some children it might be true in their mind but their perception is skewed due to previous trauma (eg a child feeling they've been physically assaulted, a FC physically moved them to safety) Though equally we can't assume that foster care automatically means safety, rightly from the feedback of some children who were removed and unwittingly were moved to people who abused them. It's not easy to balance.

It isn’t dismissive. It wasn’t attaching judgement or blaming the parents. One of the numerous reasons some decide (you may not like the wording or agree with it, but it is a choice. A choice you make. A valid choice. One some feel they are forced to make and have no other option than to make but a choice/decision nonetheless. The definition of choice is “an act of choosing between two or more possibilities.”) not to pursue support is because they don’t have time/energy to do so. Other reasons include the parent’s own disability or EAL &/or… It is why I said everyone should be supported to enforce their rights.

LAs absolutely do rely on some parents not knowing the system and law. That isn't saying they don't also rely on not all parents challenging their unlawful behaviour.

As I said, some don’t know the law, some do but don’t know how to challenge the LA, some do but decide (for a multitude of reasons) not to pursue it, some do know and do pursue it but that still kicks the can down the road.

ITA with pp, who recommend getting a solicitor. I always had an education solicitor for tribunals and JR in respect of LA failures to make educational provision.

I used firms of solicitors with a franchise for legal aid in community care law, for fighting for social care. DD1 always got legal aid. It’s much less stressful to be able to hand dealing with SS or the ICB (DD1 got NHS Continuing Healthcare Funding eventually) over to lawyers.

I need a friend like you !
As a Foster carer I cannot begin to tell people what our foster child's local authority have put us through over the past 18 yrs! people wouldn't believe me .

I will happily be your qualified friend here!

There are specialist residential facilities which the LA could use in your situation. I suggest you get in touch with SOS!SEN and get advice on how to get the ehc plan changed to 52 week residential care.

You may need to find where you want him to go then formally request it, go to appeal etc.

Don't listen to anyone who tells you you won't get it until you have been turned down at tribunal!!

I agree. If someone like the OPs child was in a residential place they'd probably (I'm guessing) be assessed as needing 2:1 staff and waking night staff through the night and a rotation of staff who would get time off and paid holidays. Yet we expect parents to struggle at home on their own 24/7 sometimes with other dependents with next to no support or at best a paltry few hours respite a week which doesn't even take the edge off. And I say that as someone who works in social work (albeit adult not children).

It sounds so difficult OP, absolutely no one can judge you until they have been in your position. I really hope the solicitors you have contacted can help.

Agreed. But the professionals on here are bleating on about the council tax increases.

Agreed. I've worked in a placement for adults with learning disabilities and challenging behaviour - it was hands down the hardest job I've ever done, and I got paid (albeit min wage) and could go home at the end of a shift. It's inhumane to expect parents to do that 24/7, and often alone with people who would be 2:1 at least in a care placement.

Please don’t refer to us raising our own children as inhumane.

Oh, for goodness sake, how petty and pedantic. This is why we get nowhere in the disability world because there’s always the martyr doing the whole ‘I’m going to take offence at every word they say’ routine. Jeez! Have you nothing better to take offence at? Like your local authority? The government? Society? I’m happy to accompany you screaming into the void. The poster did/said nothing wrong.

For some, it is inhumane to expect parents to manage care 1:1 (or a lower ratio if they have other DC) when it is recognised the child needs a higher ratio of care. For some families, that can be cruel and cause suffering and trauma to child, siblings and parents. It can lead to the child &/or siblings not having their needs met through no fault of their own or their parents. It can lead to the child &/or siblings being put in dangerous situations through no fault of their own or their parents. It can lead to carer burnout and physical and mental ill health. It is part of the reason the divorce rate among parent carers is higher.

DS1 has 2:1 at all times during his EOTAS package. Some of the time is 3:1. His carers also have a 2:1 ratio. Yet outside of that time we are expected to manage alone/just me and DH. Despite DH working full time and us having other disabled DC including DS3 who also has 2:1 as part of his EOTIS package. It goes far beyond typical parenting demands.

That's not what the comment said. It was a comment about unsympathetic local authorities.