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AIBU?

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175 replies

Mumonthebrink2025 · 04/09/2025 17:20

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.

OP posts:
Jimmyneutronsforehead · 19/09/2025 02:52

It is unfortunately quite common for meltdowns to result in suicidal thoughts, they're not just quirky tantrums, they're huge neurological bouts of distress and there seems to be a disconnect in understanding and treatment between community care and medical care in regards to how best support young people in this sort of crisis and put preventative measures in place. It's despicable and often ends up with young people either not getting the inpatient treatment at all or not getting therapeutic treatment. It's usually pushed back to community care as it's an acute episode and then pushed back to medical care as it's part of a chronic condition and it's a horrible game of hot potato.

I know it's a drop in the ocean and might seem like a redundant question but have you ever heard of pain stimming toys? It won't solve all of your daughters troubles, but they work by providing the dopamine you're craving when you're in crisis in a way that safely provides pain, so it can be a good step to redirect to before the suicidal ideation creeps in. They are sensory aids, but they're by no means a cure to all of the problems that come from having a catastrophic meltdown. They're best introduced and used regularly when children are regulated and not introduced during the crisis stage.

On the note of the special needs buggy, don't let a lack of funds stop you from seeking an assessment from wheelchair services or occupational therapy, whichever takes the lead for this in your area, usually referred by the GP. What they usually do is say we will offer you this a. Wheelchair or b. Bog standard disability buggy, and you can say yes or no, it needs to have a 5 point harness, able to hold up to 9 stone, recline as it's the only time she is able to seek rest, have a sun shade to prevent sensory dysregulation, and weigh enough that she can't tip it over by kicking back and they will say well it costs ££££ and you will have to fund some if not all of it, and then you take the offer to your local regions pushchair/wheelchair charity services who will do a cost assessment to cover the costs bar any additional add ons like transport hooks etc. I'm simplifying and it's charity dependent, but I'm going through this exact process right now with DS. Newlife and Caudwell are really good charities for this.

It sounds like she might also benefit from a safe bed. I am generally against restraint, but safe beds have their place and this is what they're for. They prevent children from causing mortal harm to themselves, and minimise risk. They're designed to be tear-proof and it means you can safely leave her unattended at least to sleep. There are also charities that will fund partly or fully for these.

On the sleep note, I might have missed it, but how is her sleep? If her sleep is poor, ie. Doesn't sleep while late, wakes too early or frequently wakes at night then a good next step once you've got a management plan for her meltdowns would be to ask for an urgent referral to paediatrics for a sleep assessment where they may be able to prescribe melatonin. Having poor sleep sets you up for a lower tolerance to sensory input, so meltdowns can seemingly come out of nowhere with no apparent trigger, when it's really the accumulation of so much overwheln and a lack of bandwidth to deal with it all. She might not even know herself that the reason she's so distressed is because she's trying to process all of this sensory input all at once all of the time because it's a hard thing to recognise. It is something to bring up to which ever medical professional accepts responsibility for her care if this is an issue you have.

I know social services have said they can only offer for her to go to a relative short term, but have they actually offered you a parent carer needs assessment to see how they can support you to support your daughter, or your daughter a child in need assessment when she is actually showing signs of being in need? I think she would qualify under section 17.

Sorry if I'm repeating what others have said as I've only read your posts.

Jimmyneutronsforehead · 19/09/2025 03:10

Mumonthebrink2025 · 05/09/2025 22:28

Oh and I asked social services for an OT assessment in the winter and they refused as she isn't diagnosed yet. Also asked the GP and they said it was only something social services could do and they wrote to social services but never heard back.

Sorry must have missed this when I typed out my long post.

Challenge it. Many OT services need proof of long term medical care or a developmental condition but a diagnosis isn't required to meet this criteria. If they still refuse then it's a ridiculous NHS policy, there's no legal requirement to have a diagnosis to get this help.

Your GP did do the right thing by writing to social services as section 17 of the children act 1989 where they can do a child in need assessment, which includes the assessment for equipment is a social care duty so if OT keep passing the buck then SS should be able to step in here as she is a clear flight risk and has demonstrable care needs. Ask for another referral and follow up within 4 weeks if you've not heard back.

flawlessflipper · 19/09/2025 10:11

Request another home OT assessment. It is not based on diagnosis. That can look at adaptations to the house, including adding stoppers that prevent doors being slammed.

Have you formally requested social care assessments? A carer’s assessment for you and an assessment of DD’s needs. If not, you need to do that because then you can take it further if refused. On their website, Contact has model letters you can use. If you have already formally requested assessments, did the LA refuse to assess, undertake assessments but refused support, or did they assess and offer support but inadequate/inappropriate support?

Mumonthebrink2025 · 19/09/2025 12:10

flawlessflipper · 19/09/2025 10:11

Request another home OT assessment. It is not based on diagnosis. That can look at adaptations to the house, including adding stoppers that prevent doors being slammed.

Have you formally requested social care assessments? A carer’s assessment for you and an assessment of DD’s needs. If not, you need to do that because then you can take it further if refused. On their website, Contact has model letters you can use. If you have already formally requested assessments, did the LA refuse to assess, undertake assessments but refused support, or did they assess and offer support but inadequate/inappropriate support?

Thank you! I was thinking that there's going to be an OT as part of the multi disciplinary team assessment in ten days, so hopefully they'll add things to the report.

OP posts:
Mumonthebrink2025 · 19/09/2025 12:11

OliveWah · 19/09/2025 01:31

Bloody hell @Mumonthebrink2025, what more has to happen for someone to give you the help you so badly need? I'm so sorry you're still being failed so badly by the services who should be helping you. It sounds beyond hard, and I have no advice for you, as you're clearly doing everything you possibly can. I'm so frustrated for you.

I know I posted this before, but it bears repeating; you sound like an excellent Mother, and your DD is so lucky to have you.

Thank you that's really kind.

OP posts:
Mumonthebrink2025 · 19/09/2025 13:04

I feel a bit helpless right now as everything is in limbo. I know I could use this free time wisely for myself whilst social services aren't doing their jobs, but I just feel so suspended by the lack of progress everywhere.

OP posts:
flawlessflipper · 19/09/2025 13:16

While Evelina’s MDT includes OTs, it won’t include a home OT assessment. You need a home OT.

SweatyBettyAgain · 19/09/2025 13:37

Hope you're ok OP.

Others have mentioned seeking OT support which I highly recommend. Do you have the finances available to fund private assessments? We have had to go private on a few occasions for our son's care (health / psychology and also OT) and it has been of immense value. If you can afford anything, definitely go down the OT route. Private occupational therapy support has been absolutely TRANSFORMATIVE for our ND child who struggles with regulation, sensory overwhelm, etc. I cannot recommend it enough.

Edited to add - the reason we went private is because we just hit barriers everywhere we turned... The school didn't see behaviour as our child masked, the doctor said we needed to self refer, but I just didn't have understanding of the system to do that... So we went private and our voice was heard. It was like someone gave us a flag to wave and from that moment onwards things got easier. Then we got the NHS staff to accept our private assessments and add them to our child's medical record, which they have done for all of them. We now have support from the school, medication referral, EHCP is underway etc.

Mumonthebrink2025 · 19/09/2025 15:14

flawlessflipper · 19/09/2025 13:16

While Evelina’s MDT includes OTs, it won’t include a home OT assessment. You need a home OT.

Oh okay, I asked the GP for that before and they said it had to be early help or social services who referred to OT, so do I just push the social workers to do this?

OP posts:
flawlessflipper · 19/09/2025 15:16

In many areas, you can self refer. If you google you may find who to contact. (OT for home aids, adaptations and equipment isn’t always via the normal OT service.) If you can’t self refer social care will be able to. The GP probably can too.

Jimmyneutronsforehead · 19/09/2025 15:19

Mumonthebrink2025 · 19/09/2025 13:04

I feel a bit helpless right now as everything is in limbo. I know I could use this free time wisely for myself whilst social services aren't doing their jobs, but I just feel so suspended by the lack of progress everywhere.

You're not helpless OP. You started this thread, you are actively searching for solutions to a much wider problem.

You and your daughter deserve so much better.

This is one of the ways that the systems in place keep failing our SEN children, especially the ones that haven't had the privilege of a diagnosis and it truly is a privilege given the disastrous wait lists and woefully poor community knowledge from supporting services, even in schools where you get the bulk of your primary supporting evidence from.

You can introduce sensory aids now, it's a small thing that is within your control. This could be the pain stim toys, it could be letting her wear sun hats and sunglasses, and swapping to polo shirts and grey or black joggers for school, it could be ear defenders or headphones.

You might not be offered a sensory profile assessment for some time, but I can recommend this from a wonderful SpEd teacher: https://sensoryclassroom.org/blogs/sensoryclassroom/creating-a-personalised-sensory-profile

It was really useful evidence in my sons ECHNA. We had the luxury of time due to the lack of severity of his meltdowns and I know that's not a luxury you have. I'm so sorry that you're going through this.

Creating a Personalised Sensory Profile: Why It Changes Everything

Learn how to use a sensory profile to understand behaviour and regulation challenges in autistic and neurodivergent children. Includes 8 sensory systems and practical interventions.

https://sensoryclassroom.org/blogs/sensoryclassroom/creating-a-personalised-sensory-profile

Mumonthebrink2025 · 19/09/2025 18:57

Jimmyneutronsforehead · 19/09/2025 15:19

You're not helpless OP. You started this thread, you are actively searching for solutions to a much wider problem.

You and your daughter deserve so much better.

This is one of the ways that the systems in place keep failing our SEN children, especially the ones that haven't had the privilege of a diagnosis and it truly is a privilege given the disastrous wait lists and woefully poor community knowledge from supporting services, even in schools where you get the bulk of your primary supporting evidence from.

You can introduce sensory aids now, it's a small thing that is within your control. This could be the pain stim toys, it could be letting her wear sun hats and sunglasses, and swapping to polo shirts and grey or black joggers for school, it could be ear defenders or headphones.

You might not be offered a sensory profile assessment for some time, but I can recommend this from a wonderful SpEd teacher: https://sensoryclassroom.org/blogs/sensoryclassroom/creating-a-personalised-sensory-profile

It was really useful evidence in my sons ECHNA. We had the luxury of time due to the lack of severity of his meltdowns and I know that's not a luxury you have. I'm so sorry that you're going through this.

She's already got every sensory aid under the sun and isn't in school but thank you though ❤️

OP posts:
Mumonthebrink2025 · 19/09/2025 19:03

flawlessflipper · 19/09/2025 15:16

In many areas, you can self refer. If you google you may find who to contact. (OT for home aids, adaptations and equipment isn’t always via the normal OT service.) If you can’t self refer social care will be able to. The GP probably can too.

I've looked and only social services can for a child here. GP can't either, as I've already asked. Social services don't even answer my texts or emails.

OP posts:
flawlessflipper · 19/09/2025 19:09

Have you formally requested social care assessments? Knowing whether you have or not is important for knowing the next steps you should take.

NatBan · 19/09/2025 19:58

OP I wonder if you could give a rough idea of your area. I bet someone here will be familiar with local services and could possibly PM you privately to discuss. Ofc I understand if you don’t want to.

Sending you so many hugs. What an ordeal you are living. Thank goodness your child has you xx

NatBan · 19/09/2025 19:59

Have you contacted your MP OP? Sorry if I have missed that. You need specialist help asap.

Mumonthebrink2025 · 19/09/2025 21:05

NatBan · 19/09/2025 19:58

OP I wonder if you could give a rough idea of your area. I bet someone here will be familiar with local services and could possibly PM you privately to discuss. Ofc I understand if you don’t want to.

Sending you so many hugs. What an ordeal you are living. Thank goodness your child has you xx

It's Kent. It's a big enough area that I can say that. When I called family rights charity and told her Kent she let out a sigh and said 'oh gosh'.

Haven't contacted MP yet. I have contacted them before when DD was having issues at school and I was being threatened with fines, but it took a while to get communication rolling with them, then I took her out anyway. I tried calling the consulate for the country my daughter was born in and has citizenship of, to say I felt a child of that country wasn't being helped properly, but they could only give me generic advice like going to the GP and contacting mind. I kinda half dreamed they'd fly us out there immediately for a better treatment programme.

@flawlessflipper yes I did a while ago, I called up and they said they couldn't without diagnosis. I will ask again next time social worker contacts me.

OP posts:
flawlessflipper · 19/09/2025 21:19

Rather than calling up, you need to do it in writing so you have a paper trail and then you can challenge the decision. On their website, IPSEA has model letters you can use.

You do not need a diagnosis.

Mumonthebrink2025 · 20/09/2025 09:14

flawlessflipper · 19/09/2025 21:19

Rather than calling up, you need to do it in writing so you have a paper trail and then you can challenge the decision. On their website, IPSEA has model letters you can use.

You do not need a diagnosis.

Thank you...

OP posts:
flawlessflipper · 20/09/2025 10:01

Sorry, my pp should have said Contact has model letters on their website you can use for social care assessment. Not IPSEA.

Mumonthebrink2025 · 22/09/2025 14:57

flawlessflipper · 20/09/2025 10:01

Sorry, my pp should have said Contact has model letters on their website you can use for social care assessment. Not IPSEA.

Hiya, have spoken to social worker today who said she is carrying out a child and family assessment. I've told them I'm not happy about my daughter being in my mother's care when my mother has mental health difficulties and history of abusing me, and they've said if I don't want her there I can collect her. I've said it's a safeguarding issue for her to be at home with me as she's self harming and I cannot always stop her. They're not listening to my concerns and determined to just find family support for us, despite me telling them my family have mental health difficulties, disabilities and all work full time and don't live near me.

They've ignored my concerns so I've put in a formal complaint. I did mention that I would not have my daughter home until a child in need assessment was done as well as a carers assessment but this was not acknowledged in the reply email.

OP posts:
flawlessflipper · 22/09/2025 16:59

For disabled children, often a child and family assessment will cover an assessment of DD’s needs arising from her disability under the Children’s Act 1989 and a carer’s assessment.

Mumonthebrink2025 · 22/09/2025 17:36

flawlessflipper · 22/09/2025 16:59

For disabled children, often a child and family assessment will cover an assessment of DD’s needs arising from her disability under the Children’s Act 1989 and a carer’s assessment.

Thank you I've requested both and put in a formal complaint and they've now said they will look to support me/my daughter under a child in need status.

They've said they can look at a carers assessment if I meet the criteria.

But so far their plans of support aren't sufficient as they all involve discussions around parenting tips of which I have many and can find on Mumsnet.

I've told them they need to push CAHMS and EHC needs assessments and they've said they can try with both.

OP posts:
flawlessflipper · 22/09/2025 17:43

Once you have the outcome of the assessment, you can challenge the decision if the support isn’t sufficient.

You do meet the criteria for a carer’s assessment.

Mumonthebrink2025 · 22/09/2025 17:56

flawlessflipper · 22/09/2025 17:43

Once you have the outcome of the assessment, you can challenge the decision if the support isn’t sufficient.

You do meet the criteria for a carer’s assessment.

Thank you. I'll keep you all updated.

OP posts: