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!

for crying out loud read the bloody OP and their subsequent posts. She shouldn’t my have to go through this all again.

I'm so sorry for what you are going through OP. 💐 There definitely are residential special schools for autistic children aged 5+, here's an example. https://www.cambiangroup.com/ga-residential-s/

There’s legislation going through the Scottish parliament which, if successful, will severely limit the profit that can be made by private providers of residential childcare. The Scottish association of social work and Social Work Scotland have campaigned in support of this for a long time now, and for consistent rates of pay for foster carers.

When writing to MPs please point to what’s happening north of the border - it can be done if there’s a political will. I’d be very interested to know how many ministers and MPs have a financial interest in private care providers.

Just in response to those suggesting the OP strong arm the social worker, it isn't just about funding but simply what exists. There may be some residentials that take disabled children this young, but they are few and far between. There are none in my local area, or in the neighbouring counties, at least for permanent homes. They were all closed down in the years when mainstream education and care in the community was the direction from previous governments. This means as well as the difficulties getting funding, it also means waiting a long long time for places to be available, and children potentially living hundreds of miles from their family. There are very few places that I know of that take this age group, they tend to be the specialist residential schools and the youngest child I've known to be placed was 7yrs old.
Foster carers for a child with these needs would usually need to be level 4 trained, experienced, and carers who are home a lot (ie not out working) and without other young children in the home. That's also rare. And the foster carers that I do know who care for children like this are often extremely committed - but that means they don't have spaces. An extreme example but I know of one foster couple who took on a child with extremely complex physical needs, ASD and LD, and cared for him for twenty two years.

I'm not saying this to dissuade the OP, or to argue that it's right, but it isn't as simple as just bullying a manager behind a desk somewhere into signing a piece of paper.

Yes, understood. In a case like you are suggesting, the LA should then fund private agency carers to come to the family home during waking hours and then other carers to come during the night. It’s simply not good enough to say to broken parents that because the precise provision does not exist locally, then there can be no provision. As someone extremely experienced with dealings with children’s social care over 20 years, there is not much lateral thinking.

I’m so sorry you’re going through this but my lord do I relate to your post. If I didn’t have my DD I’ve have killed myself or at the very least packed my bags and left by now too.

Advocating for your child and enforcing your child’s rights aren’t the same as bullying people.

Using language such as bullying plays into the hands of those portraying parents as ‘sharp elbowed’ and ‘demanding’ ‘golden ticket EHCPs’ and other such nonsense around that rhetoric when all parents want is for the LA to comply with the law. That is not bullying.

Someone will be along soon saying LAs can’t do that because there is a shortage of carers. Yes, there is a shortage of carers, but the LA/ICB can do more than shrug their shoulders and say nothing we can do. Funding carers at a higher rate, sometimes a significantly higher rate, &/or at a higher ratio, attracts staff. When forced, LAs find they can find staff. Sadly, LAs often don't do that until forced to do so because it costs more.

This
You need specialist advice op
It is clearly very dificult
Of course ss would prefer you take it all on but you have options
Speak to specialist lawyers

I've just told my dp about this thread. We've both worked with those 18+ who are in residential care and are on 2/3/4:1. We just wanted to say that your position is totally understandable. Only those who have no idea how challenging these children and adults can be would think you unreasonable. Your poor dd too. My heart goes out to you

@2x4greenbrick I hope that post wasn't intended at me. My use of the term bullying was in response to many posters suggesting that the OP just needs to be more assertive with social services, as it implies that shes not doing enough and just needs to raise her voice or 'man up' to make it happen. Its often a type of comment made about interactions with social services or the courts from people who know nothing about how the systems work and like to believe that if they were in that situation they would just 'tell them' and it would happen. I certainly don't get the impression that the OP was a weak advocate for her child as some have implied.

@ThePieceHall do you think getting an agency to send random carers in (they're always random , agencies never guarantee the same regular carers in my experience) - would work well with a severely autistic child?

As a SW with experience in this area I don’t blame you at all OP. I don’t blame individual social workers trying to make an impossible situation workable either but that isn’t your problem.
You sound like you have the resources to get the system to help you and you should use them.
Your dd deserves a childhood and you deserve support.

Our LA always tries to encourage carers to progress to level 4 (once they have suitable experience) They rarely do. For many, it just doesn't fit with their family life - commitments to their own children, grandchildren. It isn't just about money. Would you do it?

I’m not sure. I have two very complex and disabled children, both of whom have attachment disorders. In some respects, they often respond to people who don’t know them as their PDA/controlling behaviours are usually reserved for me and anyone else who is close to them. I think every case should be judged on its merits and every child should be treated as an individual. It’s simply not good enough for one-dimensional thinking to be the prevailing trope in social care. My elder daughter is a blind child. Among other disabilities and complexities. I can’t tell you how many social workers and professionals have tried to tell me how to do things differently for her based on their experiences of a very elderly person with glaucoma or macular degeneration. Neither of which my daughter has, even though she is blind and still a child.

The system is broken though ,yes there absolutely should be more support than there is but when the resources are not there than what ?
We were at crisis point a few months we have bern promised all sorts and the wheels are in motion but nothing has actually materialised yet
I do get respite so it's a lot more than a lot of people but its never enough.

I’ve done it. For 18 years. And I didn’t get paid a bean. I am an adopter twice over.

@Hibernatingtilspring yes, my post was partly in response to your use of the word ‘bullying’. It was also about the use of the word bullying more generally - it is often used to portray parents as advocating for their DC in a negative light. Advocating for your child is not the same as bullying.

Posts about how to advocate aren’t about someone needing to ‘man up’ or raise their voice. They aren’t blaming OP or saying she isn’t doing enough. It isn’t saying it is easy, simple, quick or will ‘just happen’. It is about providing information. Knowledge is power. Sadly, DC whose parents understand the law, know what should happen and when, know how to challenge LAs and enforce their/their DC’s rights, etc. get better support. It shouldn’t be like that. Unfortunately, it isn’t going to change anytime soon. I know exactly how the system works. I have enforced my DC’s rights, including via SENDIST and JR, and continue to do so. I have also supported numerous others to do the same.

I wasn’t talking about foster carers. My post was in response to pp mentioning outside carers working in OP’s home. Agency carers don’t have to be random. They can be the same consistent group of carers. Agencies won't do this without the price tag to go with it, but some will for the right money. Or carers could be recruited directly (using a payroll company if the family prefers) using DPs if the family would prefer. No, it isn’t just about money; hence my post including funding a higher ratio.

Would I do it? No, I don’t have the time or capacity. I have 3 disabled teen DSs. All 3 have EHCPs. Two of whom have needs so complex they have EOTAS/EOTIS packages because it has been deemed legally to be inappropriate for provision to be made in a school. One has children’s continuing care funding. The other two have social care funded PAs (via DPs).

As I posted, as LAs have been shown time and again, lack of funding, resources and/or staffing are not lawful excuses for breaches of the law. No matter how much LAs like to believe they are and how much they would like parents to believe they are. It is why enforcement works, although not easy or simple.

It’s not an excuse for breach of law, but in practice - what can actually be done?

As much as we’ve never considered residential, we fought tooth and nail for a minimal amount of respite that when it arrived I had to organise myself. We fought for a PA, for just a few hours a week - again, sort it yourself.

We were offered a phone number for a care company that would send random people my son would spend his days tearing apart, or the “opportunity” to independently source a reliable person ourselves. Like I haven’t already got enough to do.

Fighting the system, which is absolutely broken, takes time, energy and emotional capacity that most parent carers are already running out of. Puts more things on an ever increasing pile.

That’s why it’s so easy for them to shirk their responsibilities. The people they’re dealing with are exhausted and don’t always have the “fight” left.

@ThePieceHall I'm aware that some people do, though surely if you've done it yourself you understand that it's not something many people could do. Whether it's down to their circumstances, their wishes, or both.

A basic example for fostering is that the majority of people who foster do so after having their own children, and usually once their own children are older, or have left home (latter is more common for those caring for children with more complex needs) With the average age of people having children rising, that impacts on when and if people foster. We all know about the squeezed middle - women in their forties and fifties caring for primary age kids and aging parents - not many have capacity to take on foster children any more (that used to be our prime recruitment age) More parents have adult children needing to live at home, or the need for a home office, not spare rooms for foster children. More are looking after their own grandchildren because their adult children are struggling. The foster carers we have are brilliant, but it is getting harder and harder to recruit them.

Fwiw in our area if this was a family I was working with, my goal would be to get agreement to recruit and train foster carers for this specific child, possibly using an IFA to help. Whether that is with the aim of respite/shared care or potentially a longer term placement. Not easy to do, but it's something I'd managed to achieve once or twice for children with complex care needs where we knew family breakdown was potentially on the cards. At best you have a plan with carers the child and parent has already started getting to know, and at worst you end up with well trained carers who are in a good position to take another child.

Please ensure you’re open and honest with all processionals about how unmanageable this is for you both. Talk to them each time something extreme happens. If this is tipping yours and DHs mental health over the edge present yourself in A&E.

@2x4greenbrick but that's the point, many people, like yourself, 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. And I don't think you know anything about how agencies work in practice if you think they will guarantee a small group of consistent carers, not least because the turnover of staff in agencies is extremely high.

I have worked with older children in placements set up specifically for them, charging us 15k a week, with resi staff paid minimum wage and with minimal training and experience (despite our, and Ofsted's, attempts to enforce our agreed contracts regarding the quality of provision) Yes if the LA are forced to they will find 'something' but even at exceptional cost, what is provided can be exceptionally poor. Good quality provision takes long term government investment, and that is still lacking.

We’re digressing slightly but I hope others will forgive me. This is a subject very close to my heart. So, you need to forget about the BS Fostering Network and you need to get your FCs signed up to the National Union of Professional Foster Carers. You, as a SW, need to educate yourself via Sarah Anderson of FosterWiki. The woman is a genius and takes no prisoners. Your FCs do not need to be exposed to the BS policies of the Fostering Network whereby all allegations should be considered as true, even if they are not considered by the police to be true. We all know how many care-experienced children and young people make false allegations. I have spent 21 hours in a police cell after my teen AD made a false allegation against me. The police decided no further action but CSC still put me through a s.47 investigation and an ICPC. My teen is violent, abusive, aggressive, steals and goes missing regularly. We have never had a shred of decent support from our LA. I learned to lawyer up and now I help other vulnerable families who are being gaslit by social workers and professionals.

I have posted it isn’t easy, simple or quick, and that, for a multitude of reasons, some decide not to pursue it.

You would be amazed what happens when parents pursue enforcement action. For many, it is only when parents pursue enforcement action that LAs start to take notice.

Parents cannot be forced to sort PAs themselves. They do not have to accept DPs. LA arranged care does not have to be a stream of random people when that isn’t suitable. Of course, LAs won’t tell people that because it is easier for them if people aren’t aware of that.

I said I wasn’t taking about specialist foster carers. Perhaps you missed that part of my pp where I explicitly said that. You can believe what you want. I do know how agencies work. Some can and will ensure there is a group of consistent carers rather than a constant stream of random carers. Not always small because some need several staff to ensure the shifts are covered, but I didn’t say small.