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.

Oh lovely I dont even know what to say how horrible for both of you. I didn't want to just read and run so I'm here to hold your hand and listen but I've no experience so sadly can't offer any help other than allowing you a safe space to talk. I hope you get some help soon x

Honestly, I wouldn’t have asked her how she was going to do it - I would have talked along the lines of “I’d be devastated if anything ever happened to you, how about we chat about feelings, is there anything we can do to help you feel better right now” etc. Have you noticed a trigger for her outbursts? If so, pre-empt in whatever way you can, alter routine, expectations etc.

Thank you. This has been going on for so long now before it's escalated to this point. I begged early help to get her therapy over a year ago, and I repeatedly told school her mental health was suffering and they weren't seeing it and that she needed extra support. All they kept telling me to do was bring her in and improve her attendance and do puddle jumping to encourage her to do the walk. I took her out last October hoping it would help but things have really just been hanging on by a thread, because as she's gotten older the rages have gotten harder for her to tolerate. I went to so many doctors appointments. I had a paediatrician tell me a few weeks ago they didn't believe anything medically wrong with my daughter because of one short observation at her school 18 months ago, and nothing else. They ignored me when I said she completely melts down when I pick her up and isn't coping behind her mask. I'm paying for therapy to deal with it as I waited a year for NHS therapy and nothing happened. There's no parental support anywhere.

I've do the feelings talk over and over twenty times a day. I was asking her how she was doing it as she was marching off somewhere and I needed to know what part of the house to safe guard.

There's no trigger it could literally be anything. Me saying no to her doing something dangerous, asking her to get dressed, her games online crashing, a small itchy spot. There's nothing routine could do to help it. I've tried all the 'techniques' it's her actual mental health which is shot to pieces.

If it was an adult you wouldnt say ' just tip toe around their feelings and their mental health crisis will be averted'

I just want to go to the hospital and refuse to leave until they give her some kind of medication to help her, or even refer for an emergency ADHD assessment so she can start medication.

I understand you asked as you needed to know where to safeguard, maybe this could've been done discreetly by following her i dont know but whilst maybe asking wasn't the right decision I think in this case its helpful as it gives you another insight into her thinking, the fact she had an instant answer shows she has likely thought about ways to hurt herself and this can be used in your fight to get her some help.
This is irrelevant and I am muddying the waters here but its on my mind and im an overthinker so I'm throwing it out there. Private practice, a series on Disney, they had a storyline with the child facing explosive rages and it turned out to be a tumour on a gland (not cancer and it was an easy operation and problem solved as it always is in tv land) I have 2 asd dc so I know how unhelpful this is and I'm sorry, its just with you not being able to see any triggers or patterns it reminded me of it.
Keep fighting and pushing for help, if shes masking in school then get videos of her at home during these episodes x

Oh op 🥺🥺💔

I dont have any advice but I want to offer my support

My dd is 6 and has autism. She isnt yet verbal and I do worry about what thoughts she has in that sweet head of hers.

I know you must be terrified. But you've done exactly the right thing imo.

Is she struggling at school or being bullied? Even slightly? Us autistic kids can pick up on a weird atmosphere, even if we cant explain it.

Well done for keeping your head. You are not alone, will be checking in through the evening ❤️

this is such an upsetting position to be in, however unless she is on the brink of needing an inpatient stay she is not going to get medication. That isn’t how it works. Even if she’s in active crisis they can’t just prescribe emergency medication to cyp unless the risk is so severe that it is preventative to an inpatient stay.

Sadly, we see this a lot with ND young people, when dysregulated head banging/skin scratching or saying they’re going to kill themselves or want to die. therapy is wonderful but at this age the majority of work happens with the parents. She’s very young. In my CAMHS it would very much be about supporting parents to access parenting courses re ND children, learn how to co-regulate alongside anything therapeutic with a child of this age. There might be some gentle work with the yp around strategies to use but would always be looking at parental capacity to keep them safe and contained. It’s a lot on parents emotionally.

This is peak time as well, returning after summer break there are so many calls to crisis of ND children

I didn’t say to tiptoe around your dd’s feelings 🤨
My post was an initial response to try and gauge what you can do. As a parent of disabled children, I have a fair bit of personal knowledge. At 6 years old, her extreme poor mental health is obviously being triggered by something. I don’t mean 1 specific thing, but she is an unusual case. I hope you all get the help you need, unfortunately it’s never a quick easy process, hence why I was trying to start a basic ground to work and help with.

Edit to add, sometimes we talk to much to them. My dd just couldn’t put thoughts and feeling into words, I was making her so much worse by trying to get her to vocalise and understand.

@frazzledbutcalm
Agree that sometimes there is too much talk. At that age, therapy talk isn’t always the most helpful thing (speaking as a therapist!) and co regulation is just miles better.

Disagree that it’s very unusual though, lots and lots of ND young people at the moment age 6/7 and upwards ringing up distressed and saying they’re in crisis. Ever increasing and seems to be getting younger and younger!

Sometimes the killing myself talk is not suicidal ideation but code for 'I feel really, really bad and I need you to know how bad I feel.'

She just tried to throw herself in front of a moving truck when we went to the shop opposite our house, so it's definitely not code.

Waiting on cahms to call me today. Not sure what they will do. Hospital were very kind and supportive. They asked social services to put more support in. Social services have called and said it's down to cahms to support. Just barricading myself at home now as don't even feel safe taking her out. I have the wrist reins but they're too long if she decides to go in the road. The buggy I have isn't strong enough for the size she is now, if she tried to break free. Which she has done when she was younger.

Have you actually been to the hospital? If she's actively trying to kill herself, then I'd be sitting at the hospital and refusing to move until they admitted her, saying that you were unable to keep her safe at home. Sometimes it's the only way.

Slightly different, but with DD1 I was bounced around all the departments for months while she deteriorated. Finally, when we went to A&E she was admitted and she was taken on by the CAMHS psychiatrist as an inpatient. It would have been at least a year if she hadn't been an inpatient.

Thank you for sharing your story. How old was your child if you don't mind me asking? We did go to the hospital last night. They did bloods to check for anything underlying and they called cahms but cahms told me to go home and wait for the phone call and my daughter was begging to go home.

If it escalated I will go back though.

@Mumonthebrink2025 She was 15. I had been trying to get help for a year up until that point.

Have you looked at an SN buggy or wheelchair? With a harness if necessary. And/or a harness/reins aimed at disability rather than toddler reins. With a handle to hold on the harness itself rather than a longer handle.

Has DD had an OT assessment? To look at making the house safer and better meet her needs. What about a sensory OT assessment.

Does DD have an EHCP? If so, what mental health support is included in there? When you say you ‘took her out’, do you mean you deregistered and you are EHE?

Try keeping a detailed diary. There will be triggers. They may be difficult to spot and not immediate, but they will be there.

I can't afford one of those buggies right now. We get DLA but I'm a single mum so it goes on general living, as I can't work whilst she's like this.

She doesn't have an EHCP, I'm in the process of gathering evidence. She's home educated but won't let me educate her, but has taught herself to read. There's no triggers, we could be sitting having a chilled out time doing something she enjoys and she will just flip. It's more like I can predict when she's about to flip out based on a rhythm. So it's like a wave, she will have a wave of calm, then a wave of agitation, then a wave of calm, then a wave of agitation. All through the day.

We're at the hospital again. They're agreeing we shouldn't go home, cahms said they will come to my home on Wednesday, but they're trying to get social services to help.

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.

Have you looked at charity grants for an SN buggy? Newlife has emergency equipment loans you could also look at. In some areas, wheelchair services provide SN buggies, so it is worth checking if your area does and requesting a referral.

Request an EHCNA now. You don’t need to wait longer. On their website, IPSEA has a model letter you can use.

You can also inform the LA you are no longer EHE and request they make suitable alternative provision.

There will be triggers. They may not be easy to spot and may not be related to the moment when meltdown starts, but there will be trigger(s).

I did do an EHCP, but I was so mentally drained I didn't find the evidence and send it off in time, so they rejected it and I need to gather evidence and do it again.

I'm too burned out with paperwork ATM and I'm just waiting for get access to her go records to print stuff off. I'm trying to push social worker to help me with these things but they just say 'yes do that, that's good. I need to act more naive I guess.

We're at the hospital now, they're going to move us into the children's ward and hospital are pushing for more support whereas social services are trying to get me to go home and wait for cahms next Wednesday. They said that because cahms gave me a safety plan (lock windows, hide knives) I just need to follow that and I should be fine. There's going to be a meeting at the hospital tomorrow and I'm dreading it because I know how the social services try and put all responsibility onto the parent.

Your situation sounds so lonely and horrific for you. From the thread on elderly parents the advice is to use the words “ unsafe discharge” and get it noted. This should get you a few more days while they assess your poor dd.

Obviously it is up to you, but you don’t need to wait to gather more evidence. You can send the request now then send more information and evidence when you get it. That way the clock starts ticking now.

When was the LA’s rejection? Do you still have the right of appeal? If so, you can appeal.

I just wanted to jump.on and say how sorry I am you are having to deal with not only your child's difficulties but this awful, swamped, broken system. It's so so hard and frightening as an SP especially because it's ALL on you. I don't really have any practical advice as you sound pretty clued up already but didn't want to read and run. I think "unsafe discharge" is probably a very useful tool right now and will help you to get a little support even for a day or two. Best of luck xx