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?

1stepforward2back, having read your link, I stand corrected.

In a CAMHS parent support group we were told that we weren't entitled to a carer's assesment until the child turned 18 As soon as my child went to adult services I was offered a carer's assessment without even asking, which confirmed my belief that the information I had been given was correct.

My child had a social worker following an in-patient stay but they didn't mention a carer's assessment either.

And SouthWestmom I can completely understand that you feel tired of everything.

I don't think anyone who hasn't lived with a suicidal child can really imagine what it's like.

@SouthWestmom can you do something nice for yourself today? Do you have the money to treat yourself to a massage? If getting out is difficult there are mobile ones that come to your house.. a friend treated me a little while ago to that and I slept well that night. Hugs xxx

I'm waiting to see the GP. Again 🙄. I feel like I have some form of trauma stress - I've skipped work to come but I would love to do something nice. Maybe I need to go to a different town and just escape it all.

Sorry for taking over the thread a bit.

Managing this stuff is so stressful isn't it - it's not like physical health where there are generally straightiah lines and clear answers.

SouthWestmom, I hope the GP listens. If you ask for an advocate they can help. It won't take away the worry and stress, but it will help with the chasing and feeling of fighting alone. Can we help with anything?

Roseau18, LAs will often tell people they don't have to assess, and need reminding they can not make up their own rules and must stick to the law. It comes under a different section of law for parents of children under 18 - the Children and Families Act 2014, compared to The Care Act 2014 for over 18s. And the Carers (Recognition and Services) Act 1995 if you don't have parental responsibility for the under 18 you care for.

A few model letters
over 18s
pg4 of this document for parents of U18s (sample letter 1) and other family members of U18s (sample letter 2).

I would really recommend asking for one so you (and DC) are on their radar should a crisis of one type of another occur. Sometimes there are other things it can lead to too - grants, services you didn't know about etc.

Yes GP great. I have the rest of the day now so am drinking tea:

This is what I've found helps:

Reading up before meetings (mental health act code of practice, advice on websites like mind, nhs nice guidelines) - really wish that I'd done that before the section stuff.

Thinking before answering. Deciding what they need to know. Not filling gaps with more words.

Listening to my dc and not trying to solve it. Just letting them tell me.

Oh and the referral for s.17 cin came through (late) for me to look at so I will.

I'm glad the GP was helpful SouthWestmom. I hope the rest of your day was calmer and today has been ok.

You are so right. Sometimes you can't provide answers or DC don't want answers. As much as I'd like to I can not make things better for DS. I know myself sometimes I just want someone to listen, so I can offload, you can't 'fix' things - don't try.

Making notes during meeting and following up meetings/phone conversations with emails setting out what was discussed can also help. It creates a paper trail you can use as evidence if needed later down the line.

I hope everyone is managing.

Why do you have to fight for everything? It's exhausting.

Fight for the right MH care.
Fight for appropriate education.
Fight for the right medical care.

DS can't access a MH service he would benefit from because he is either too old or too young.
The plan we thought we had for education isn't going to work.
We can't get the right treatment DS needs for a physical condition.

Hi everyone - hope everyone is managing ok.

My DD's school "counsellor" has just sent us a form to fill in for DD to be assessed for ASD /ADHD / other. She's ticked the first 2 boxes but not the "other".

I left my ex (not DD's father so no hereditary implications) for complications arising from his ASD behaviours; I know ASD sooooo welll as I read millions of books and lived it for 7 years so I can unequivocally say my daughter does not "have ASD"!

And ASD is not even a "thing" anymore - they've changed the diagnostic criteria and now there are 7 forms of autism.

Sigh. The counsellor has asked us to also fill in a page which asks questions pertaining to "please indicate xyz how this pupils performance compares to others in the class". How do I know?!?! She has 9 teachers and we've had 5 mins with each throughout the whole year?

Sorry for my rant...

Obviously I don't know your DD, but ASD can present very differently in females (especially high functioning ones) compared to males.

DS doesn't have ASD, but I have other DC who do - one diagnosed with Aspergers and one with ASD (who would have had hfASD had he been diagnosed before the switch). Some of the signs/symptoms can overlap. None qualified people often ask if DS has ASD because some of the signs of one of his diagnoses can present in similar ways, but very differently in other ways.

Have you got a link about the changing diagnosis categories? I thought both the ICD-11 and the DSM-5 criteria moved to one diagnosis to encompass all other previous strands? ASD is what all the NHS teams I know of now diagnose.

I think it is probably a good thing they are assessing, and if they think she doesn't but does have something else they will say so.

You could ask for other to be ticked too. Do you not have a grades overview sheet/report/online access. Though that Q sounds more like it should be completed by school.

On our way to first Psychologist appointment. Making place for later

@1stepforward2back thanks for your response. I did ask the question on the aspergers support thread (which I was on for ages before leaving my partner). I found this; www.autism.org.uk/about/diagnosis/criteria-changes.aspx##manuals
What I'm annoyed with re this counsellor is that she should have checked the "Other" - it's the OCD which is the worst. And focussing on the way my DD directs her rage towards me and how it is upsetting me; I am the parent and can deal with it...
She also told my DD that she was "not normal" and "odd". We checked her out on FB and she has 2 open accounts both showing pictures of her teenage girl (i.e. non-private). So I really do not see how this woman is qualified to deal with my child...
But you're right, the clinical assessment can only be a good thing but I'll make sure the "other" is checked.

@hebdenbridge - fingers crossed it goes well, keep us posted.

Good luck Hebden.

Midcentury, I think that link confirms that the move is away from different categories and towards ASD. I have checked the ICD-11 and that did change too, it's just coded differently for people with different levels of needs.

OCD can often be co-morbid with ASD, and some people with ASD show OCD like symptoms but the symptoms are part of the autism rather than meeting the separate OCD diagnostic criteria.

If your DD isn't benefiting from the school counsellor why not stop the sessions?

I increasingly find relief in momentarily thinking about ending my life. I don't know how much longer I can tolerate the screaming and shouting/melt-downs. I feel like I am trapped in an abusive relationship. Always on eggshells, trying to foresee what is going to be the catalyst for the next out burst. I am exhausted and my nerves are shot

And i dont want yo be sworn at and name called anymore

Hi Hebdenbridge, I hear you and you're not alone. Can only send virtual hug but it is heartfelt. Is there anything you can do just for you today ? You know the old airplane thing - advice for parents - attach your own oxygen mask before helping your child. It's old but so true, you need and deserve a bit of time out for you. Like feeding your spirit / inner strength so you can tackle tomorrow. You are strong and capable and those are the names to call yourself

Thanks for replying soberish, I appreciate it. I am hiding upstairs whilst dd2 watches tv, for a bit of respite. It's been too much this afternoon. Reasons I have been screamed at have included 'going to the toilet' because then DD can't go to the toilet, as the seat feels 'soft' and she can't sit on it. She peed in the bath in the end. My head is so mashed by endless ridiculous demands that I can't see a clear healthy division between 'setting boundaries' and 'choosing your battles'.
My last straw tonight was the barrage of abuse shouted at me from the adjoining room, whilst I was making the dds waffles with chocolate spread and strawberries, because I had forgotten to bring cutlery. In what universe is it ok to scream at a parent whilst they prepare lovely treats for you??! She is such a joy-sucker. Why can't she just enjoy life??

No chance for replenishing myself for the next few days as have to work;and have Thursday afternoon with her, taking her to therapy. But day off on Friday. Having a hair cut and going for a walk with a friend. Just need to keep a lid on it. If she gets wind that I won't be at work, there will commence a convoluted battle to stay home from school

Sounds tough. Hope that tomorrow's a bit better, and hope you can look forward to Friday

Think of you all often .

The normal comment is atrocious.

Hebden are you getting any support through talking therapies. Although I nearly fell off the chair when my gp suggested it when there were none available for dd due to lack of resources. The system is a complete and utter arse.

My experience too - our GP suggested I call a local community centre that offers counselling services, when I was looking for help for my DD and getting nowhere with camhs. There was some miscommunication on the call, so only after I’d booked a time did they realise it wasn’t for me but for my daughter - ‘sorry we’re not taking on any more teen patients as we are completely overwhelmed - you can try again in 6 months’.

@Hebdenbridge Hey - just dropping in quickly to see how you are doing today. Hope you are looking forward to your day off tomorrow and the sun is shining for you 💐💐

@Hebdenbridge just a thought - does your LA have a "Family Well-Being" capability? You'd get seen quite quickly through there if you told them what you've told us - and they can then refer onwards.

They are part of the Social Services team but their remit is to help stitch families back together in a supportive way. I've heard it can be a bit hit and miss but it may be worth a try? You can self-refer, use strong words describing how serious it is and they'll have to do something. Or am I being naive...

Just thought I’d check in. Things have been going around in familiar circles with ds here. No forward movement, but not a massive downward slide either. His psychotherapist basically said we needed to stop and take stock, as we were just fighting whichever fire was the most urgent on the day of each appointment and not getting a chance to deal with the underlying issues. (His anxiety end of year exams took up several sessions, costing us hundreds to end up discussing revision techniques, rather than actually doing any psychology work. He was convinced he was going to fail, but somehow managed decent passes on them all.)

His Psychiatrist wants to keep him at the same level of meds for now, as his worst OCD rituals are controlled. I’m not so sure, his big/obvious rituals are reduced, but he is constantly ruminating and his level of avoidance of well, just about everything is getting ridiculous. Dirt, germs, ‘contamination with . He basically doesn’t touch anything unless he really can’t avoid it and if he does have to touch it, he will use any means necessary to go and wash/clean his hands without being noticed as soon as he possibly can. Problem being, he denies all this when we see his Psych and says it’s just habit that eg, he doesn’t touch doorhandles and he can do it if he wants to.

The decision has been made to work on his underlying low-self-esteem and self-loathing issues with his Psychotherapist, but if he can’t cope with those sessions, she has lined up an EMDR practitioner who is going to try and work with him to adapt the EMDR to be more accessible for him.

I am dreading the summer holidays - which start in less than a week in his case, as he will just spiral, whilst at the same time refusing to come out of his —cave— room or do anything that might stop him becoming increasingly depressed.

I have been in a bad way, physically, myself and his brother has had a really bad exacerbation of his illness as well, necessitating trips to A&E for monitoring and complete bedrest, so it’s all been a bit full on to say the least. He has had to drop all but his Maths GCSE, as he just hasn’t been well enough to study. (We’re hoping he might be able to pick Science and English back up in September.) I feel like I really need a break, when in actual fact I am just about to end up with all three of them at home for 8 and 6 weeks.

I always hate these last few weeks before the summer holidays, schools suddenly seem to ramp up their demands on parents, lots of ‘events’, school trips (which as many of you will know are massively anxiety inducing in lots of our children), non-uniform days, bring in this or that, donate this or that, it’s never ending. With three children at three different schools it’s not unheard of for me to get 15 emails from schools in one day. The only saving grace is that with my younger son still being on medical leave, I can ignore the ones from his school at the moment.

Moose, fire fighting sounds familiar. At times it feels like wading through treacle. I hope your other DS improves soon.

Does the psychiatrist realise the picture from DS isn't the true picture? That must be common, particularly in people who lack insight, as many with serious MH problems do, or like those with co-morbid ASD. Do you think your DS believes it is a habit?

I hope your day off helped Heben.

Today DS had 2 appointments that were disasters. Both highlighted new problems. Both could be improved if DS had the medical and psychological treatment he needs. I am hiding downstairs comfort eating while DH deals with getting DS to sleep. Which is another thing we could do with help with, but everyone says they don't know what to advise.

Can I pick your brains about sleep issues please? DS has difficulty settling alone and wakes several times throughout the night. We have tried everything we can think of, and after another horrendous night last night I need to improve our situation. I am already dreading tonight. Has anyone cracked sleep problems?