Advice on 7 Year old erratic mental health

[Holland82]

Currently in a bit of turmoil with my 7 year old.

Diagnosed ASD and school not supporting as academically achieving and said she seems fine in school.
Over the years she has increasingly shown anxiety with the world but because of being an expert at masking, even I didn't quite realise just how anxious she was. Last couple of months she has been showing more erratic behaviour such as violent outbursts, extreme meltdowns, very low moods mixed in with hyperactivity and then times when she is her normal self.
It has also been almost impossible to get her into school the last couple of month with her being violent towards me, screaming and shouting, and refusing to even go onto school grounds. It can take up to 4 teachers to coax her in and even forcibly get her in the gate. They always say she is fine and normal once she gets in despite me raising my concerns with her decline in her mental health.

She is currently self harming at school, mornings of school and the evenings before school. She says she feels scared and worried all the time and has expressed on several occassions she wishes she was dead.

The school know this and still refuse to acknowledge that she needs support in school. The school FLO has tried to befriend her and introduce her to the pastoral care team where they said they woukd try to meet with her weekly but are busy so won't be for a while. Problem is that my DD just won't talk to anyone and always says everything is fine as masks so much outside of the home.
It is getting to the point where I am being made to feel like I am neurotic and over the top or it is a parenting issue so tend not to engage too much with the school as seems pointless and feel I won't be believed.

Last week while getting ready for bed, DD became extremely distressed and was shouting hysterically for me to come upstairs. When I went up she was very distressed and crying saying someone was talking to her and it was scaring her.
She calmed down and I sent her into school the next day as said she hadn't had anymore occasions of hearing voices so thought it was just her imagination.
However it has just happened again and I was in the room with her when she became distressed again and was saying the man was talking to her again and it was coming from the TV. The TV was not on and she was hysterical as he was telling her to not go, don't trust them and that they will hurt her.
I am obviously not sending her into school tomorrow but worried about the schools reaction or what they will do as they now call me if she is off school to see why as i log it on studybugs as mental health and they check up. My plan is to try to contact the GP and also Camhs in morning (already waiting for a referral to be accepted) but I am also totally confused as she can behave totally normal, then have random extreme episodes and now hearing voices so worried no one will believe me and even doubt myself sometimes.

GP previously said it sounds like she has anxiety and depression so that is why we are waiting for Camhs help but feel stuck with no support from school and a child who is clearly struggling. I feel as a parent that I don't know what to do right now or for the best.

Any advice?

No real advice other than do what you're already doing.
Is there any way you could film her when she's saying stuff about school so you can show them what effect it's having on her? Not ideal I know, but at least then they wouldn't be able to deny she needs support.

Definitely update camhs as they may change her priority ranking based on "suicidal ideation" and hearing voices

I have managed to film some parts of episodes but as I am usually being hit or trying to stop her hurting herself, it can be hard. If she sees I am trying to film her she also goes for my phone and it makes her episode a whole lot worse but will keep trying. The school see her each morning kicking off and saying this stuff and have chase her round the carpark or physically force her in.

Picking her up Thursday, the teaching assistant told me she spent most the day self harming and making her nose bleed but excused it as nothing by saying it was probably just because it was an odd day as her normal teacher was striking.

Hard to understand how a school can think there still isn't an issue.

Agree that GP/CAHMS is a definite. As a pp said, the new development may mean she is moved up the waiting list. As you says, it is hard to understand why the school don't think self-harming is a problem. Do you have contact with the Senco? Are they dismissive too? Might be worth contacting a charity for child mental health for some guidance.

This sounds so stressful for you and awful for your daughter. I don't think this school is right for her at all, is there somewhere more supportive she could possibly move to, it might be stressful moving in the short term but this doesn't sound like a good place for her at all and they sound really clueless about ASD. Is this is a big school? Just wondering as it has a pastoral team - if so she might cope much better in a smaller school.

Write everything down so you don't forget what has happened and so you don't start questioning yourself. Push for the CAHMS appointment. I really hope dd get the help she needs.

Senco was where the first refusal to support started. Senco was the one that kept saying let's wait for a diagnosis and now we have it, I get told she is achieving academically at the moment so isn't a problem for them to support with yet they won't put that in writing despite me asking. I imagine it is more about funding and resources than anything else.

Op my sympathy at your situation it sounds very stressful and upsetting for you and your DD. Yes a CAMHS referral is the right agency but be warned their threshold for intervention is high- you may get little from them in reality to help with your DD. I would really suggest that if you are financially able you have your privately DD assessed by a child and adolescent psychiatrist urgently; does your DC have an ECHP for emotional and behavioural issues: you may want to apply for this to get her better support at school or to look at moving her to a more specialist school that suits her needs better.
I really hope things sort themselves out for you xx

We are limited on schools as waiting lists are terrible and told there are at least 20 ahead of her on the list for her year group for 2 other local schools.

It is quite a big primary. 4 classes to each yer group and they have 2 FLO's a mental health wellbeing teacher and a behavioural teacher as the pastoral care team but these are shared with the infants and juniors. Reason I chose the school is because they advertise and show off how great their support and SEN is but seems we were all duped and many parents are heard complaining about it.

I am trying to log key events as we go as suspected a while ago I will need to make a formal complaint at some point. I just hate confrontation not very strong when it comes to standing my ground.

Oh OP that sounds hard. The Not fine in school Facebook group is amazing and will help because your school sounds awful

The school must make their best endeavours to meet a pupil’s SEN. That applies whether they are academically able or not, or whether they have a diagnosis or not. Email the HT reminding them of their duties.

If DD can’t attend school the LA must provide alternative arrangements to ensure DD receives a suitable full time education.

In addition to this have you applied for an EHCNA? The benefit of this is if the LA agree to assess it can include OT, SALT, psychiatrist, clinical psychologist assessments without the need to sit on the normal waiting lists. And if you get an EHCP it can include ongoing therapies, again without the need to sit on the normal waiting lists.

That is one of my fears Genevie82 that Camhs won't help either.

I enquired about a private assessment and could afford it however they are fully booked until end of May and then wouldn't be able to afford their ongoing treatment costs so would just be an assessment.

DD doesn't have a echp plan as she "presents" fine in school although they acknowledge she self harms. School would not support us applying for one and don't know if I have enough evidence or DD is bad enough to try to get one in place myself. Without one, I would have no chance to get her into a special school where we are from.

The knew the system was failing but never knew it would be so hard to get help for a child so young who harms herself and hears voices.

Oh my goodness this is truly shocking. So sorry you and your poor daughter are going through this. The school is badly letting her down, how dare they say she's fine in school when she's self-harming!

I think you're right though: the bottom line is schools are skint and they prioritise kids that are struggling academically but it's just not ok.

It sounds like you're doing an amazing job advocating for your daughter, I know it might feel like a losing battle but keep phoning/ emailing the GP and CAMHS and the teachers because they will only help if you refuse to let up. This is also helpful for evidence.

There are places worth phoning for free help if you haven't already tried. IPSEA.org.uk are a good organisation. Also if you Google SENDIASS followed by your county, I found my local group really helpful. Also your local Autism group might be able to suggest help the school should be offering e.g. spending one day a week at farm school for kids with anxiety.

You can apply for an EHCNA yourself. You don’t need the school’s support. On their website IPSEA have a model letter you can use.

You can get an EHCP for a child who appears ‘fine’ in school, although when you know what you are looking for there are often signs DC are anything but ‘fine’.

The threshold for an EHCNA is relatively low - a) has or may have SEN, and b) may need SEN provision to be made via an EHCP.

Be careful with SENDIASS, some are good but too many repeat the LA’s unlawful policies. IPSEA and SOSSEN are better.

.. the school is certainly letting your DD down. I would seriously a consider private initial assessment by a psychiatrist - it will be quicker and more fruitful
than CAMHS and there will be an assessment with likely recommendations and diagnosis to present to the school which could be used to leaver a ECHP plan for her. Just being able to sit and talk to a psychiatrist about how to manage her MH will be hugely reassuring for you.
I work with in a field that can involve children that are placed in hospital given their MH is so significant- CAMHS will still offer very little service. Im
sure they are effective intervention to some families but if you can find a better way for your DC don’t wait on a CAMHS waiting list xx

Hi there OP bless you and your poor daughter I feel for you.
my son is 6 with extreme anxiety and possible adhd/autism so I can relate on in small part and that’s challenging enough so I can’t imaging how tough.
I would pull her from that school while you try to get her an urgent psychological assessment. I feel the school is not helping her mental health. Spend a couple of days together out in nature forget the stresses of the school system. Seek professional advice. I pray for you both that your daughter gets the support she needs. Never stop fighting. I wish you both all the love.

Don’t deregister. It is often easier to get support when on a school’s roll even if DC can’t attend. Crudely you are someone’s ‘problem’, whereas it is easier for professionals to sweep DC’s needs under the carpet if you EHE. If DC can’t attend the LA must provide alternative arrangements, but if you deregister you relieve the LA of their duty to do this.

This is more severe than my DD, but before she had her ADHD diagnosis when we had significant concerns about her mental health, we phoned 111 for advice one night when it was particularly bad. They referred us to social services for help, social service spoke to us and said they didn't feel they needed to be involved with our family as we were doing everything we could, but that the school weren't doing enough. They contacted the school and told them she needed a lot more in school support and school were a lot better after that.

I know people get worried about social services involvement, but I don't think dd would have got that support if they hadn't contacted the school for us.

It's awful the lack of support there is for children and young people with mental health issues. Adults too, but I always think if they put more resource into helping people when they are younger it might mean less is needed when they get older.

Uou need to contact social services and ask for urgent help l. Something is very wrong here, either at hone or school or both. No 7 year old should be acting this way. Very disturbing even to read.

Excuse all the typos, new phone

That sounds awful, OP.

Definitely seems like more than anxiety and/or depression. She’s having auditory hallucinations.

Definitely speak to your GP as a matter of urgency and ask to be seen by CAMHS as soon as possible.

If you’re being fobbed off, do you have a local mental health crisis team? They would be able to give you details of paediatric services.

As a last resort, call 111 and explain. I imagine you’d speak to a psychiatric nurse who could then refer you to a medic.

Your daughter’s so young, what a shame this is happening.

I know the voices sound alarming but they are actually fairly common in ASD and can be a misinterpretation of internal dialogue. CAMHS is rammed at the moment and honestly they might not be the best agency. With neurodiverse children reducing the social and sensory demands to meet their capacity is usually the best way forward. This usually means a reduced timetable, late starts to avoid busy unpredictable spaces, a cast iron predictable timetable and reducing transitions.

If you are going private then the best value would be to get a sensory profile done that will point towards what can be reduced or increased to make school tolerable. It may be that the self harm is in itself a sensory strategy and something less harmful can be identified. Ed Psych or even better, an OT who deals with neurodiversity might be the best bet. They are much under-utilised and can honestly work miracles.

I’m sorry you’re having such a hard time. I think you should consider an illness called PANS PANDAS as a cause for this. Have a read of the symptoms, see what you think. Did she have an infection or strep a couple of months ago before things escalated?

Please don't get freaked out by her auditory hallucinations. Like DaftWeeBun says this often comes with neurodiversity and being overwhelmed. She's at a really big school and no doubt reached her absolute limit.

It sounds like your doing exactly the right thing by keeping her at home. Like other pps have suggested having a reduced timetable will hopefully reduce the stress she is under but that school is failing her terribly but the LA has a responsibility to get your daughter into a more appropriate setting.

Your local SENDIASS, SOSSEN or even children's services can be very good at helping you access the local provision that is out there. You might be surprised to find horse sanctuaries, farms and gardens where they have regular days for primary aged children to attend and they're a huge boost for overwhelmed children.

One thing to note, on its own a part-time timetable should not be used long term. Part-time timetables should be short term aimed at reintegration, after this DC should either be in school full time or alternative arrangements made as well as part time school/instead of part time school (depending on DC’s needs).