Ongoing support thread?

[SouthWestmom]

Shall we have one?

It's so difficult to deal with.

Anyone raising a child or young person with mental health issues who wants to just check in?

@OhTheRoses state of children's mental health is scary. Did you see the itv programme on the priory?

@moosemama that sounds appalling and I get the loss (again) being intensified. My dc doesn't appear to help themselves either, very passive and not attended education or done any work in hospital for months now. I've had to accept that I'm now a carer.
I've said unhelpful mean stuff too. I don't know how 24/7 of this crappy life could be lived like Mary Poppins.

@midcenturylegs

This is the thread

Thank you @SouthWestmom was hunting around and couldn't find it and about to ask.

Hello all, hope you don't mind me joining you.

I'm crumbling inside a little. My DD, who's always displayed a lot of insecurities and friendship issues throughout her life has (since starting Yr 7) started going downhill rapidly.
Complains of being fat and skipping school dinners (she's slim), making friends and breaking those friendships.
What has become increasingly worrying over the last 2 months (and it seems to get worse every day) is what I think is OCD. Has to touch the corners of all furniture in the room, walking along the street darts around touching things with her feet. It's getting really bad.

I spoke to her about it when it first started and she said she had to do it otherwise something bad would happen to me, or her Dad or her sister (from her Dad's latest relationship). She's refusing to do things I ask and smashing precious things of mine.

There's a lot more to the backstory, but my gut feeling is that I need to get professional private health care now and not rely on 15 mins here and there from the school counsellor.

Any thoughts on what I should do from those who might have been through this? It seriously is rapidly getting worse, day by day. I'm making things worse by 1) her finding me sobbing 2) me ringing up her Dad for him to pick her up (I'm a single Mum, no excuse, but I am thinking this is making her feel more invalidated) and 3) me shouting at her and saying things I really not should he saying to her

Sorry - rambling post. I've not read anything prior to this on this post -will have a read after posting this. 💐

@moosemama - just read your post (am slowly slowly accepting that my kid has MH problems). I could have written half of what you had (I think the other half being an age-related difference).

Hi mid century why private and not CAMHS? Is it impossible where you are? We tried private at first but my dc became very unwell with it all. I don't think that's always the case.

Gave you tried your GP? Is your dd accepting of needing help? I found the Young Minds helpline really useful when I managed to get through.

Can I join please?

I have NC to protect DS' identity. DS is younger than your DC, he's still primary age with complex needs - I hope that is OK, or is this a thread for older DC? His primary MH diagnosis is PTSD. Just when I think things are slowly falling into place seemingly from nowhere we take several step backwards and I am left unpicking the trigger while trying to pick up the pieces.

I am at my wits end trying to sort some kind of educational placement for him which is even half suitable. He has been completely out of education for a while now and out of school for over 3 years. He is struggling with the lack of routine caused by not receiving the provision within his EHCP since last year.

Hi - anyone parenting someone is welcome.

I'm sorry about the lack of education - is he too ill to access it or is it just wrong?

Thanks SouthWestmom.

DS was in MS but his MH deteriorated rapidly to the point he couldn't cope with school and they couldn't cope with him. From then to the end part last year he attended a CAMHS day unit. For some of that time it was because that's where he needed to be, but by the end it was because there is no suitable place for him to move on to. In the end the NHS couldn't justify his placement there given it wasn't clinically necessary and put the onus on the LA to find a placement. Unfortunately, there isn't anywhere suitable. In my search I have looked all over England.

How are we all doing?

My child is taking medication and waiting for therapy.

That's appalling one step why is it down to you?

@1stepforward2back Is your LA not providing home tuition, either online or 1:1 for your son? They have a legal responsibility to provide him with a ‘suitable education’ if he is absent from school for 15 days or more. MH reasons are just as valid as physical.

Have a read of government document. [[https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/269469/health_needs_guidance__-_revised_may_2013_final.pdf]]

You need to contact your LA’s EOTAS (Education Other Than at School) Officer, as ultimately they have responsibility for ensuring is receiving an education suitable for his needs. Legally then can’t just not educated him, they have to provide home education if no other option is available. (I have a son whose physical health deteriorated in Y8 and has now been out of school since Feb 2019 - he has 6 hours 1:1 home tutoring a week, core subjects only.)

Urgh! Messed up the link. Doh!

Things have improved a bit here since ds1 went back to 6th form. He always does better with routine though, so holidays are frequent flash points.

Last therapy session was very different and very upsetting. Basically, she thinks the root of all the anxiety etc, surfaced. Lots of self-esteem stuff, plus trauma from severe bullying. So we’re going to focus on helping him work through that, in the hope that it might then help the work he needs to do on the OCD.

SouthWestmom, I initially looked at schools to see which was the most appropriate to name on DS' EHCP. When none were suitable I extended my search area and kept going.

The LA admit they don't know what to do with him, dragging their heals is saving them £££, but costing us significant emotional energy. As awful as it is DS being at home 24/7 isn't in anyone's best interests, it is bloody exhausting and other DC suffer.

moose, we are just about to start following through with our threat of judicial review, something we didn't think we would have to do. Between finishing MS and starting the CAMHS unit he had EOTAS home tutoring. Now he is being offered online provision that he can not access, and that doesn't provide the therapy etc.

Is the medication working SouthWestmom? DS takes an antidepressant and an antipsychotic (which is also used for PTSD) and while he has improved I hoped they would allow him to engage in therapy better and be at a point EMDR was suitable which hasn't happened.

Here’s that link again...

Ensuring a Good Education for Children with Health Needs Who Cannot Attend School

X post moose. DS is always much better with a structured routine and there's always a dip post difficult therapy sessions. Apparently it is after therapy sessions DS' CAMHS team sees the most crisis calls.

1step I feel for you. We had to threaten JR to get them to finalise ds1’s statement. They were deliberately holding it back, trying to avoid starting paying for his provision until the next academic year. I am so sorry they are messing you about like this, they have no idea of the damage they do to families that are already struggling.

EMDR has been suggested for ds1 to deal with trauma from severe bullying (some of which is clearly at the root of his OCD). It has worked well for my sister, but I’m not convinced ds will engage with it.

1step the post therapy aftermath was pretty grim. I couldn’t take him home, so we went for a drive and then to a cafe until he felt he was ready.

I sit in on his therapy sessions at the moment. I was hoping he might be reaching a point where he can do it without me, but she still wants me there, but not to contribute (which is how things were working with the OCD work) as obviously as his mum I feel the need to rescue him all the time and he needs to be allowed to sit with his emotions and work through them. It’s so hard though, when he sits there running himself down, full of self-loathing. He just can’t see the good in him or the reason why we all love him.

Hi guys

Meds are keeping his head above water. Left hospital almost two weeks ago with an aftercare plan (go back to school, take meds, see a CBT person 🙄) and we still don't have a CBT appointment meaning he has lost momentum and is very unlikely to engage. This has got to be one of the worst aspects of UK provision I've been unfortunate enough to encounter

SouthWestmom that is so frustrating. Totally agree with it being one of the worst aspects of UK healthcare. No joined up care or co-ordinated plans.

It’s good that the meds are helping, but ultimately they’re just a sticking plaster and without the back up care and therapy they’re never going to be enough. I hope they pull their fingers out and get the CBT sorted really soon.

We’ve found the meds have helped with the more severe aspects of ds’ rituals, but the consequence has been freeing up his brain space to come up with lots of new anxieties. Having said that, I think they’ve also been the catalyst for all the buried emotional stuff to come up to the surface. Which is a good thing in terms of working through things and hopefully processing it all, but not great in terms of what this is like day to day, for both him and the rest of the family, in the meantime.

SouthWestmom, not much of a plan then, how rubbish. We have been lucky with CAMHS since moving to tier 4 services (tier 3 care was lacking), though I think that is more to do with the influence of a medical team for a physical health condition he has.

DS' rapid swings from high to low and back are reduced by meds.

Moose, I've heard of really good results from EMDR when patients can fully engage, not quite so good if they can't. Initially DS was too young and immature to even be considered, now he is still to immature and wouldn't be able to cope or engage. The plan was meds and a host of other types of therapy to get him to a point where he can engage. It is frustrating because I know it would really help him.

At first DS needed me to stay with him during therapy sessions, it took a very long time for him to even acknowledge any therapist/nurse/psychiatrist. That option was removed at the CAMHS day unit - much to his dissatisfaction! Now he's reverted to his old ways. I find some of what he says painful and have to bite my tongue a lot.

We did try family therapy. Never, ever again.

We had to threaten JR for EOTAS after he left MS however, the threat doesn't look to have worked this time.

Interesting the experiences of Tier 4 - we found them much better. I have no faith in CAmHs anymore . I don't think it's just underfunding, I think it's attitude and ethos. Underfunding means you can't provide a service yet, ethos means you can't be bothered to tell me.

My mistakes today included

1. Forgetting DS' SN buggy when dropping his brothers at school. DS refused to walk. Not a brilliant start to the day.
2. Daring to need to go to the toilet when taking DS to an appointment at the hospital.
3. Forewarning DS that we are going to see a new clinic next week. I thought preparing him was the best thing to do, turns out it's not.
4. Cooking a risotto. Apparently DS hates it and I know he does. Well actually DS you ate the exact same meal 2 weeks ago and cleared your plate.
5. Saying it's bedtime. DH is currently consoling a post meltdown DS upstairs.

I am exhausted. Hope others had a better day.
SouthWestmom completely agree re: lack of organisation and communication. Though they have nothing on the community paed.

3. Forewarning DS that we are going to see a new clinic next week. I thought preparing him was the best thing to do, turns out it's not.

I did this with a blood test once ! Never again

Usually preparing DS helps - removes the scary unknown and gives him a sense of control. We show him photos, talk through what will happen etc. Not this time though.