I can’t do it anymore and there is no help or way out.
That sounds a very difficult situation to be in.
Can you tell us more about your situation?
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Katherine, welcome to the forum.
I know that “I can’t do it any more” feeling. It wasn’t that I didn’t want to care, I was completely and utterly exhausted, and it was making me ill, very ill. 14 lots of antibiotics in 12 months. My GP told Social Services that my son with learning difficulties MUST become a boarder at his school, to give me a break. Then longest I’d had in 16 years was just 4 nights.
I had it again with mum, housebound for 30 years, 28 different health issues. In hospital for months, the ward sister decided that mum was OK to live alone, bedbound, with 4 calls a day! I dug my heels in, and finally mum moved into residential care.
There is no shame in admitting that someone’s needs are so high that they need lots more care than one worn out mum, son, daughter, husband can give.
Tell us a bit more about your situation, and we can help you find the quickest route through the maze of Community Care.
I’m a single parent carer to four children. My eldest son (16) is being assessed for possible ADHD at the moment which may have been missed, as his teacher said recently ‘but he isn’t badly behaved!’. My eldest daughter (14) has been (late) diagnosed with ASC with a PDA profile and complex mental health issues that result from trauma around domestic abuse experiences and late diagnosis. My younger son and daughter there is a question about whether they both may also be on the spectrum and some professionals have observed indicators but they have been in a school that I can only describe as not believing in SEND. They are twins and due to go to a high school which is more supportive in September.
I have relapsing remitting multiple sclerosis and am also autistic.
My daughter is complex and requires 24/7 supervision as she is at risk of suicide most of the time and self harms regularly. She tried to kill me last year and she can be violent towards people when they intervene to stop her trying to kill herself.
I don’t have any real support, and neither does she, she can only manage 1 hour per week in school. The other three children are now also traumatised (the eldest by DV as well) by exposure to my daughter’s difficulties & unmet needs & experiences of repeatedly speaking to professionals over and over again only to be dismissed and no help to come.
After my daughter tried to kill herself & me last year the SW accused me of emotional abuse (FII) and tried to remove her from me but this was refused by the LA. Following this I paid for a private assessment as prior to this (and one of my issues) all we had by way of explanation of her needs was a one page letter from paeds stating she ‘meets criteria for ASD’ and nothing else. Private assessment confirmed dx of ASD, added dx of PDA & trauma and was very comprehensive (though harrowing - predicted a future of forensic care without quick support) and set out precisely what is needed from all services. Most of this was written into her EHCP at tribunal but none of it has been done & recent SW assessment simply lists new labels, says I ‘expect social care to solve all my problems’, says other children are not at risk from me (and so they have ‘no relationship’ with them) but instead of forced removal of daughter offers voluntary foster care.
However I know this is not an option as last year I signed s20 whilst traumatised after she tried to kill me and they could not find a single placement in residential or foster care prepared to accept her and then tried to send her to her father (BPD, cocaine addict, abusive, just out of prison) with no risk assessment Re her needs because - as SW said to me - ‘we only have your word for it that this happens’ and that he didn’t need a parenting assessment because ‘his probation officer says his mental health is fine’, at which point I brought her home because despite struggling I could not let that happen (she would kill herself or run away).
This repeats experiences with schools - all except one said they couldn’t meet needs - and services a number of specialist services have said they can’t help because of her needs or have tried and given up when it became obvious that it was not just autism and she started becoming violent towards them.
I have done a SAR and there has been a considerable amount of recording in the file that services stopped coming because of ‘parental preference’ which is not true at all. This is also something they claimed about her present school and I have emails of me desperately requesting they name the school and emails in the SAR to each other saying THEY don’t want the school named.
I just can’t do any of it anymore. There is no escape. I get no break. I just get blamed. The school which is the only supportive place have broken up for summer.
Oh my goodness, Katherine. This all sounds a total nightmare.
Raising someone with autism and PDA profile is hardcore, factor in mental health issues and only an hour a day of schooling term-time plus other children with special needs and your own health needs - I’m not surprised you are going under.
This stood out to me in your post:
Private assessment confirmed dx of ASD, added dx of PDA & trauma and was very comprehensive (though harrowing - predicted a future of forensic care without quick support) and set out precisely what is needed from all services.
This needs addressing - I suggest you contact IPSEA and fight for this specialist, residential provision https://www.ipsea.org.uk. Your daughter needs more support than you can single-handedly provide. Your daughter sounds like she would secure joint funding between health, education and social care or even just from education and health to fund her a specialist place and IPSEA are able to help fight for this. (Did you use them to get to tribunal? I did many years ago.)
Your twins sound like they do will do well at their new secondary school once they have settled and your older son is being assessed. He is doing well to manage his behaviour in school. Does he ‘let of steam’ when he gets home?
It is actually what was suggested by the psychologist - pooled funding, joint working, proper assessment of the home as three currently have to share a room & we are cramped but no assessment of what we all need, urgent care provision that is home based rather than relying on police & A&E who just discharge her with no support, work that needed to begin in the home and that we all had to be considered to have needs individually and together.
I borrowed money to get a solicitor that understands PDA and it was him who recommended the psychologist I used. She was the only person that had actually assessed my daughter directly at that time. She spent a long time in our house talking to each of us separately & together and it was a testament to her ability & understanding that she was able to actually make my daughter comfortable enough to really engage properly with her as most of the other people have used behavioural techniques which have sometimes then tipped her into hospital - this was the reason for the most recent admission IMO, the SW engaged a PBS company to separate her from me and to teach her how to behave (I only know this from the SAR because they were secretive about what they were doing at the time).
She spent several hours talking to her - no mean feat for a stranger who is coming into her space with the label ‘professional’ to do an assessment.
My eldest son hasn’t really been allowed to struggle at home TBH. He became withdrawn, isolated and suicidal and only very recently he has started to get very angry. He has always had issues with memory, concentration, focus, fidgeting and emotional regulation, interrupting etc. I am not sure whether it is early life experiences/home life or neurodevelopmental but an assessment should give the answer. Every single teacher has always said ‘he is SO lovely but he REALLY needs to focus on his written work’ and he can get disruptive in big classes - they put him in a smaller group for year 11.
I have been asking for proper assessment Re ASC obs & MH and the interaction between the two, a disability needs assessment & continuing care assessment from health since at least 2018 and still have unresolved complaints about that (been to ombudsman, useless just took the LA’s word they would answer). All this is why I was accused of FII I think. Until 2019 SC position was she had not even been diagnosed with ASC. They have recorded police reports about DV I made but accuse me of lying about it. It is written that I am ‘economical with the truth’ and they were at one point warning other professionals not to listen to me because I ‘recruit professionals’ whilst telling me they didn’t need an assessment of her needs because ‘you are her mum and you know her best’. There is a horrible email from the previous social worker to the disability support service saying ‘I bet she kept you there for ages ’ after telling them not to listen, which explains why that worker came to the house apologising to me about how she couldn’t help but she understood that services didn’t understand and giving me contact details for things she said she ‘wasn’t meant to’.
I can’t ask for help from these people but just now I also can’t face another battle like I had over the tribunal where they directly lie about ‘parental preference’ pretend there has never been disagreement, don’t comply with the outcome & then start telling everyone to ignore me. It is too much. I don’t have energy for a fight just now.
Plus there is an issue with the fact that talking about any of this where she can hear (and she is hypervigilant) triggers her distress - understandable and I literally do not have any time away from her where I can do this. Even during term time it is not possible to say ‘she will be gone between x & y time, call then’ because I cannot predict how long it will take her to actually go with the teacher. Sometimes it can take 45 minutes at which point she is sometimes only able to be out for 15 minutes. Sometimes she needs to come back because she starts struggling.
When they have meetings about her they have to be by zoom and there is no way to keep her away often she will interrupt and start shouting about what is being spoken about. Then they write assessments that say I ‘tell her too much’ or that I am telling her to feel negatively about professionals. It’s just never ending.
If they invite her she disrupts the whole meeting & they say they can’t talk about what they need to talk about.
Sorry for another post
It is difficult because I do not naturally want to completely discard any professional’s advice and I always take criticism seriously but I am getting very very mixed messages.
On the one hand the solicitor prepared me for her needing to go into residential school because ‘most parents really can’t manage a child like her’ but then the psychologist said I am doing such a good job that that would be unnecessarily traumatising especially given her early life trauma.
Social care are resolute I am a terrible parent who gets everything wrong (though they never articulate what I get wrong or why they think it is wrong).
I am used to lots of people coming and either telling me I am doing an amazing job but they can’t really help or coming and telling me I am doing it all wrong and I need to use ASC specific behavioural approaches and then it escalating to hospital where the police see it as MH but the hospital see it as ASC.
There are no post diagnosis ASC health services here so it is then a merry go round of CAMHS saying ‘no mental health issues, just autism’ with nowhere to go & SC saying to me ‘I don’t know how to help her, we don’t see many children like her’ and then writing horrible assessments that just blame me but don’t explain at all how they think I should change or explain when I ask (literally the SW just goes silent).
this is a lot to unpick.
Clearly you are doing a great job with your daughter - but the mental and physical toll on you is becoming too high, if you go down - then what? I realise you are exhausted and the thought of fighting with IPSEA’s support is something you dread doing and don’t have energy for - but what are your options - stay as you are or fight?
PDA profile is little understood by many professionals. Are you a member of https://www.pdasociety.org.uk? Can they offer any advice re how they have got help for their children/young people?
I think this is the thing and why I feel lost and like their is no solution. I’m reasonably convinced that me going down actually only means me being dead as far as social care are concerned and would result in the same outcome as me asking for help - my children being put into residential care with an explanation of their needs that basically says that they have been badly parented and need discipline. So I know the other option is to fight them but from past experience this just entrenches the view about me, which I think has damaged all the children - but my daughter most of all - and results in withdrawal of the things I think help & introduction of more behavioural services/separating her from me stuff.
Every time this has resulted in harm coming to her then violence and hospital. She had 3 years without an admission (I think) because I had stopped using behavioural techniques & moved to low arousal & we had a series of understanding social workers where she made enough progress to engage with a school which was all then undone by children with disabilities social workers deciding it was parenting & she needed behavioural services again. Next time that happens she may well actually kill me as her violence has escalated with each hospital admission and then it is the same result.
So, going forward …
somehow survive the holidays, avoiding behavioural strategies and implementing low arousal techniques that you know work.
Get everyone back to the school/ in term time routine and contact IPSEA for help implementing advice of professionals you most trust (Private reports.)
Was the independent psychologist able to recommend any services/placements/professionals who could implement PDA-friendly support?
I started to write about my son’s issues, but it was turning into an essay.
Contact IPSEA for advice, your daughter is entitled to education until she is 25.
I know there are several very special residential schools in the New Forest where I live, a neighbour worked in one, but the fees are very high. I strongly suspect the LA is saying they can’t find anywhere suitable, because of the cost involved.
Your health is being totally ignored, from what you have written, yet it is so important. It’s vital you have time off to recharge your batteries, or you are going to end up very ill, as I did. All your kids need support, so between them, you deserve help.
I wish I could offer more help, just wanted you to know that the LA and social workers were all horrible to me too, and ignored my health completely. Between 14 years old and 16 years old my son had no respite at all, (I later found out I was being punished for making a formal complaint!)
By the time my son was 16 my GP told them that my son MUST move into residential care, so they had to find the money.
It is good all good advice thank you and I appreciate not feeling alone in this at least.
I can afford one private assessment per year and have a social work assessment booked in for November (earliest they could do). I’m not sure if it will actually have any impact on anything.
I’m just struggling. My eldest is angry all the time, my younger daughter is falling apart and I think it has tipped the balance in combination with the school breaking up and social care picking this time to start pestering. I spent the whole weekend crying.
It is hard to find any positives or any hope at the moment. Things are so broken between me and the local authority now that I just can’t see how they could ever be repaired or how I could ever let them into my home again.
I think from my own stuff it is true that it is rare to find anywhere that can meet her needs - I had to send the EHCP to schools myself at one point because the LA weren’t doing it (and blaming me for not picking a school even though I couldn’t visit any because no replacement care and no transport - ‘it’s your problem… just leave her with a neighbour’). All the ASC provisions said her mental health was a barrier. My solicitor said they will never be able to find a foster carer who is willing so I shouldn’t worry about threats on that front.
She seems to fall between gaps. Therapeutic placements/services can’t deal with the ASC, ASC provisions can’t deal with the MH.
I don’t have contact with health for myself at all, not even the GP, ‘you can have healthcare when your daughter goes to school’ is what the LA said.
Some of the things I just can’t believe ‘just leave her with a neighbour’ when they come two by two because they think she is a risk to them. ‘We’ve only got your word for it’ when she was sitting in hospital having been brought there by the police after attacking me and the woman from the behavioural service, when she has been s136 in the past and when others see it just writing it off as me ‘recruiting professionals’… It is so awful. I don’t know how they sleep at night.
@Katherine_1802 Thanks for using our forum to reach out for support, and there is a lot in your post that is obviously very concerning, so I will send you a private message with some pointers.
Carers UK Carer Support team