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?

I'm really really mourning the child I had. This has just been so sudden.

I'm thinking of applying for DLa to help with private therapies. What has anyone else done?

Today I had to praise him for getting dressed and out the door for an event. This is the child who was on film sets and winning awards at school a couple of years ago. It breaks my heart.

Sorry! That was really self indulgent.
I agree that uni is probably a trigger because they are suddenly managing everything themselves and there's a huge amount of social pressure I imagine?

It is probably normal to feel that way. I feel like I am mourning the child I once had, who when her mental health wasn't too bad was bubbly, bright and funny.

That child has disappeared for now and in her place is a withdrawn and sad person who is hard to reach. I now even have to remind her to eat, otherwise she probably wouldn't. I hope we can get her back to something resembling her former self, but it could be a long and bumpy road.

She has gone to her work at a local coffee bar because she wants to keep a semblance of normality and I am pretty sure that keeping busy is a coping strategy for her, forcing her to keep going.

I am glad your DS made it out to his event. I hope he is able to enjoy it, whatever it is. Every little might help.

I was on one of these support threads a few years ago. DD was depressed, anxious and self harming: cutting, od's, witholding food. I was bereft at how this had happened and how I hadn't seen her going down. It came to a head at 16/17 and she missed a couple of terms of school but restarted 6th form. She had therapy, fluoxetine, more therapy, propranolol and was eventually diagnosed with ADHD/ADD often not noticed in high performing girls. It was a long old slog. But she did get better. Well learnt to manage her mh and will probably always be anxious. She still takes fluoxetine and ritalin has been a life saver. Looking back she was far worse than I imagined at the time.

But she is 20 now and we are much closer than I would otherwise imagine. I worry constantly. She has not harmed for about 18 months (I hope). She did very well in her A'Levels and is nearing the end of her first very good term at uni. Somehow we got through it and reached the other end.

I know her mh is likely always to be vulnerable but I just wanted to empathise and say I understand and let you know there is hope when it seems defeating. It is really important you all try to make time for yourselves and be kind to yourselves.

With love x

Thank you ohtheroses for your lovely post and I hope your dd continues to go upwards.

Ohtheroses, I did read that earlier but didn't have time to respond.

Glad to know that your DD had improved. I hope that can be maintained and built upon.

We are still right at the beginning of the process with this latest episode, so it is good to know there is hope when the chips are down.

How are we all doing?

My latest problem is my dc coming home from uni. Dc (I'll) moved into their room and previously just moved back in with other dc. Now is saying cant cope as OCD is so bad.

I will be honest, I am finding it hard to reach my DD at the moment. The MH team she is with are now considering referring her to a different team. I don't yet know the full reasons, but have been told that they hope to be able to tell me more when they manage to speak to DD later (she has promised to call them this afternoon during a free period).

Of course, that all makes it very hard, as I feel like I am working in the dark quite a bit, but they do need her verbal understanding before being more open with me. It is hard, because a 16 year old is legally still a minor, but really able to make decisions of their own about their health care, so also (rightly) covered by patient confidentiality.

That doesn't make it easy for parents who still need to provide practical and emotional support though. I need to know, in case she is a danger to herself, but sometimes I can't know until late on if DD has clammed up and is playing her cards close to her chest.

Oh what a nightmare. It's difficult as it doesn't seem to work for families within which they are dependents.

I've totally come to the end of sympathy for my dc and am finding it really hard to keep being kind and understanding. His ocd is really impacting everyone and he is becoming the recipient of the family being mean - eye rolling, remarks- as the other kids are fed up with it.

I need to use today to regroup and restock my energy to manage.

I totally know what you mean, SouthWestmom.

My DD's problem is not OCD (that I am aware of), but an eating disorder is suspected. I don't know how we will get through that one.

One step at a time, one day at a time, I guess.

Hi, can I join? Bad day here too . DC with OCD, anxiety, not coping at school. Lots of shouting, crying, frustration from all of us tbh. Totally exhausted with it. DH on the brink of a breakdown himself. DC is 13. Dont know how many years of this we can cope with.

That sounds tough, helpless. Difficult days seem to be the norm here at the moment.

Just have to get through a day at a time.

Hi helpless you are me!

Same everything.

I think it's helpful to just chat to people who get it. In RL I get helpful suggestions all the time, or I worry I'm breaching his privacy or whatever whatever.

Sounds awful, are you getting help?

I managed to chill out today and be a useful parent this evening. I've decided I can control me and no one else. Normal discipline doesn't work.

Topeyst. I am
So sorry if you are having to face an eating disorder, that must be really really scary. My dd went through a stage of dabbling and I was on the edge all the time. She's fine, jut went sideways into fitness thank god.

Hi, thanks for your responses, it is good to talk to those who understand, but I am sorry so many others are also in this situation. We are waiting for a CAMHS assessment, long wait though. OT appointment is due within the next two months apparently, for the sensory issues. School are bending over backwards and are prepared to make all sorts of reasonable adjustments but DC will not engage, the OCD means their brain gets stuck and they cannot see any way to get round a problem, very inflexible thinking. How do people maintain jobs if the DC wont go to school? We are really struggling with that.

I've negotiated a flexible start time but I think my job is at risk.

I've explained that his ocd is making this more likely but he is still more afraid of whatever is unreal than the reality around him.

I find that at the moment the worry for me is when the NHS will come up with appointments for DD, especially for the initial assessment stage when a parent is required to attend. Obviously that is important and I will make sure I am there, but it does take organisation.

I work mornings. We need the money. Sometimes I can juggle my hours and work in the afternoon instead, but not always. The more frequent the appointments, the harder it gets. That is until we hopefully get to a point where she can take herself again. No idea when that might be at the moment.

It is so hard to manage isn't it? Sometimes I feel like I will need to quit my job, but I love it and it gives me a break which stops me going over the edge too. That sounds really selfish doesn't it?

No not at all.

I'm just being really honest with my dc therapist, I'm not fantastic at this and I get cross with them and I do snap.

I'm also worried about my job - there's no support for childcare type issues really.

Trouble is all childcare options are about little ones. Once they get to a certain age you are supposed to not need it. It is hard to find someone who would want to look after a teen with MH problems.

Yes true.

Well mine had therapy last night and is now totally worse. Like a control thing:

I have a migraine after the appalling day yesterday and am now missing work to wait in the car to drive him again. I'm so sick of this, I didn't sign up for it and I'm shattered all the time. Our relationship is crap as I'm so angry with him.

It's true about the care options.

There's nothing for teenagers because I guess that most don't need it. When they do though, you're on your own.

And Helpless, not selfish at all. Your own wellbeing is important too.

Thanks Topseyt. My wellbeing seems so far down on the list of priorities at the moment!. I hope everyone's day was better today, we have made a small amount of progress with going to school but only after a lot of shouting, I feel so exhausted I can barely appreciate the small step forward we have taken. But tomorrow is another day and I hope for better things for everyone.

My DD is apparently having a hard day today. She can't articulate why but has told me in WhatsApp messages. She wants to stay at school to be doing something normal. I've phoned the school and one of the sixth form staff did agree to surreptitiously check that she is where she is supposed to be. They phoned me back and confirmed that she is there, in one of the places her care agreement states.

This is hard. It is difficult to know what you should be doing, and I agree that your own wellbeing goes somewhat onto the back burner.

We have an clinic assessment next Thursday. It was the earliest I could get for her. We have to get that far in the meantime. It feels like forever. We could get end up in A & E if she really goes into crisis. That seems to be what they advise if the correct clinic can't fit them in in time.

I feel powerless. I've looked at her school meals record via Parentpay. She buys very little there. Mainly teas and coffees, and on some days nothing at all. The odd small pot of fruit. She will eat some dinner in the evening when she knows we can see her, but only smallish portions. She will have a tiny amount for breakfast, but I don't get to observe her much then as she and DH have to be out by 7.15 and it can be chaotic.

Arrrrgh!

Please may I give all those dealing with CAMHS a word of advice. Take a note of what is agreed at every appointment. Reiterate your understanding to them. Afterwards follow up in writing what has been agreed and send it to them registered delivery, add a sentence that says if you do not hear back by x date you expect what has been agreed to be complied with. They are very inclined to move goalposts and say parents have misunderstood.

And if you can't cope then pack overnight bags and go to A&E. It's extraordinary how the NHS that can't afford earlier interventions can affird an acute admission to facilitate a CAMHS emergency review.

The system stinks. Involving your constituency MP ramps up the pressure too.

With love