To ask for a hand hold

[Mumonthebrink2025]

Trigger warning: suicide

My six year old has been having Nuerodiverse meltdowns since toddler age and I'm still trying to get her some kind of diagnosis to find out what's causing it all. Now she's older it's a lot of rage and violence towards me and the few weeks, she's been expressing on a daily basis after a meltdown that she wants to die and for me to kill her. I keep talking her through it and trying to hold space for what she's feeling. I've asked her if she feels like that all the time and if it's only when she gets her rages and she has said she feels a little bit that way the rest of the time and it's all related to having her rages and she hates the feeling of the anger and hates her life because of it.

Just now she was having another outburst because I was trying to keep her safe in practising her roller skating on the carpet and not on her wooden balance board, and then asking her to get dressed, and she had a huge fit, spitting at me, lashing out. So I said to her our trip out for strawberries was cancelled as I just didn't have it in me now to go through with the battle of her not getting dressed and listening to me safely with getting the bus etc.

So she has another huge fit and said for me to kill her and I said no. Then, and this is the first time this has happened, she said 'im going to do it myself them' and marched off. I said how are you going to do that? And she said 'with a knife'. So I grabbed hold of her and called 111. She's on triage for someone to call back but they said it won't be today. I don't know what to do. She's calmed down after I told her I was contacting a doctor.

I'm in shock so sorry if I sound a bit detached.

I don't know what to do. She has a social worker allocated since the self harm comments, she's been referred for camhs, and we're waiting on ADHD and autism assessments.

Just coming back to say thinking of you OP. I hope you're OK.

Ahh thank you...everything is still in limbo and I've been really down but hopefully after this Monday's assessment the future may look somewhat brighter.

I'm rooting for you and your little girl. Someone has got to be able to give you some answers.

I see you're in Kent. Are you anywhere near Beams? They may be able to help both with care and education issues. Also you could try one of the drop-in advice centres run by SOS SEN - https://sossen.org.uk/services/walk-in-advice-centres/.

I'm afraid Kent's social services and education have never had a good reputation, and it's worse since Reform got in there. I really hope the assessment takes you further forward and that the mediation gets you on the path to assessment, but be ready to enter your appeal immediately if it doesn't.

Well I've given up.

We just had a forty minute zoom meeting with the team from Evelina after the three hour assessment (a bit of a red herring, a lot of the assesment was them talking to me and introducing the team etc, they probably spent a total of 20-30 minutes with my daughter) and they refused to continue the meeting because my daughter kept interrupting as she was getting disregulated by me being occupied. I had warned them beforehand that giving me a last min appointment wouldn't end well as I have no childcare and they pushed me to do it anyway and that they wanted to share what they had found. When they ended the meeting, I said well can you at least tell me a diagnosis? They said 'a diagnosis isn't helpful' and kept going on about giving me a picture of my daughter's profile. I said 'i already know my daughter'. They refused to email me their findings. No follow up date has been given and so I've emailed them via the social worker to request a written report of their findings under the data act thing. (Chat gpt helped me so I definitely didn't say data act thing).

DD is home with me now and is a lot calmer but she spent a few hours with my mum on Friday whilst I had a driving lesson and has been unsettled/grumpy/troubled since.

I've realised I can't get social services to do anything properly even though they emailed me saying they were going to do xyz when I submitted a formal complaint. All that's happened since then is they arranged one family conference meeting and then cancelled it, as the social worker couldn't make it. Oh and the social worker emailed the EHCP team after I asked them to advocate, and then so helpfully forwarded me their response of 'this is how the tribunal process works'.

I'm going to just focus on trying to find and apply for some grants which I could use for private therapy and help in the home.

But I'm exhausted, haven't washed my hair for about month, smell really bad and DD pooped in her nappy overnight so my bed smells now and I've no energy to fix anything, and we might be living on McDonald's for the foreseeable future.

Oh but I did manage to send off the DLA COC forms to try and get higher rate mobility and a longer award length, but the evelina report can take 12 weeks they said so I haven't got any evidence towards it yet.

Just realised my update wasn't very clear . We had assessment last week in person. No information given. Zoom meeting scheduled today last minute to update me on their findings
They cancelled the meeting forty minutes in without giving me any info as they kept getting distracted by my daughter and said 'you can't focus'. I told them İ definitely could focus because I'm so used to life being like this, and then she did settle down but they refused to continue. They also refused to just tell me their diagnosis and said a diagnosis is not helpful.

She's home educated but won't let me educate her,

when did you withdraw her? Why?

Sorry if missed but where is her father in all this? Do you have other children?

I'm not answering your questions.

Nothing of use to say, but just wanted to send hugs, hand holds and sympathy your way. How incredibly frustrating (massive understatement!) I really hope you manage to break though and get some support from somewhere, and perhaps there are some local parents who’ve also been through all this shit who can be more useful in navigating the local “system” - wishing you love and sanity! X

For the EHCP application, bear in mind that at this stage you are simply asking for a needs assessment, and you only have to show that your daughter may have SEN and may need an EHCP. When local authorities refuse, well over 90 of the parents who appeal succeed.

I’m sorry it’s not gone how you expected .. they can’t give you a diagnosis of anything this quickly though, it can take years in the system. Has she actually been through the diagnostic process yet? Seen all the relevant departments yet? From memory I didn’t think she had, apologies if that’s not the case.

Yeah she has, this has been three years. She already had the assesment and they said she didn't tick enough autism boxes but refused to assess for anything else so this was a second opinion service and they had all the info from the original assesment on top of their own assessments.

Yeah it's just a year here to go to tribunal. I was trying to get the social services to liaise with EHCP team to bring forward the mediation date forward as they offered me a date in at the end of July 2026. Otherwise I was hoping for the report of this assesment sooner so I could just reapply with stronger evidence. However they're saying 12 weeks for a report.

Just get the certificate and submit to SENDIST. You don’t actually have to partake in mediation, only consider it. You can then request an appeal is expedited because DD is not in school full time. Refusal to assess appeals aren’t a year. Unless there is a compelling reason otherwise, they are held on the papers, so are a bit quicker than oral hearings.

Why don't you want to engage about home schooling, if you're not managing to educate her at home and not being in school isn't helping her have you looked into alternative provision of some kind so she can gain an education and a social outlet and you can rest and recover?

I’m sorry OP, it sounds like a really really difficult position to be in and it’s clear you’re trying as hard as you can to get your daughter support.

Have you heard any more from CAMHS? I think they’re your best bet. Social work have a limited remit with mental health and neurodevelopment disorders so there’s not much they can do, but that’s not helpful when the waiting list for CAMHS is so long.

What did they spend the first half an hour of the assessment feedback session talking about? You said they cancelled it 40 minutes in, so I hope they said something helpful before it ended (even if it did end early!).

Yes i was also shocked by the OP’s response to what seemed like a very reasonable and relevant question

What hope does this child have given she’s been removed from the education system to be home schooled, but her parent admits that no home schooling is actually taking place.

Every day that passes this child is getting further and further behind.

OP you were very defensive about the question why you removed her from the education system. I hope you have second thoughts if you carry on not being to home school her as you say the situation is.

I take it your children havent had the type of issues it is difficult to discuss becuase I suspect the OP wants nothing more than her child learning in school but they cant

but the child isn’t learning at home either

at least in school this can be properly escalated

Yes again I take it you haven’t experienced burnout in a child

i do agree that withdrawing does mean the school aren’t there to help but that help isn’t always helpful and can cause far more stress

the OP clearly has social services involvement etc and school really doesn’t sound like an environment they could cope with

DS had school based anxiety for 2 years and neither of us are ready to talk through some of what happened during that time (including self harm) and ours was not on the level of this OP at all. Somethings are too painful to talk about

I was naive too before I went through it but schools can be bloody useless

Yes I do have a child with serious SEN
Yes I have read the full thread
I think that staying at least registered at the school would been infinitely the best idea.

This child is not receiving any education or routine or structure or engagement with other children in any shape or form. Anything would be an improvement and that “anything involves being registered at a school

I agree I think staying registered would be the right thing but aren’t there parts of the journey you just don’t want to talk about and I think the OP has that for that part