Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

Hi - not too sure where to post this so please direct me if somewhere else better. My 18 year old dd has at last minute decided not to go to Uni as 5 hours from home as wants to reapply somewhere nearer next year. She has been receiving conselling from a private Counsellor/Psychotherapist for year as NHS counsellor was very unhelpful. However I think she is now in much worse place & needs something more professional/medical so wondered how I found private psychiatrist or even if that was what was needed? Many thanks!

Nothing of any help to add here just my support. I think that you are all fucking awesome. 💪🏻 I’m in Scotland so we have a different system here. It’s an outrage that help is to hard to come by. Are any of the charities any good?

@hanghang can your GP signpost you? Maybe you could arrange a call? Good luck. Such a difficult time for our young people.

@hanghang I would see if you can obtain an recommendation from your GP initially. DS is seeing a private psychiatrist here & he's excellent. He's also pretty much the only one here ☺️.
So we didn't have much of a choice.

DS also had counselling for several months. It initially seemed to work but then he started self harming again and told me he wanted to stop. CBT was bringing up all sorts of feelings he couldn't handle I think.

Hence, the Psych. has put him on an antidepressant with an anxiolytic effect. These can take 6-8 weeks to work and can sometimes make things worse initially. DS became suicidal on them 2 weeks in. We are having to keep him very safe in the hope that things will get better soon. However he's been signed off school for the next few weeks. Not brilliant in a GCSE year but the most important thing is that he gets better.

I'm just telling you this story so you know what to expect. You will sense as a parent that something is wrong with your DD and the best way to go about things. Also sometimes it's one step forward & 2 steps back.

@Bubbles our Psych. said pretty much the same thing to us. I don't think we've been discharged as we can still contact them. However we already have treatment ongoing & I've spoken to the school, so we have a plan. I don't need any NHS or local authority support. I can sort that out by myself. I realise that I'm very lucky to be able to be in a position to do that.

Many thanks

Welcome hang. To find a psychiatrist you could go through somewhere like The Priory or Psychiatry UK. Alternatively some hospitals such as The Maudsley offer private treatment.

Always you will be eligible for carer's allowance if DS receives at least MRC and you earn less than £128 after expenses. If you receive CTC or UC inform them about the DLA because you will get a disabled child element, and for UC a there's a carer's element too.

Mackencheese following both the AR in Oct 20 and the early review in Feb 21 you should have received the right of appeal either with the notice of the decision the LA didn't intend to amend the EHCP or with the finalised amended EHCP.

@1leapforward2back thanks, he has been awarded middle rate care and lower rate mobility, so I'm eligible on that, but I earn over £128 per week, although I have been signed off since May and don't think I will be able to go back, not at the moment anyway, considering asking for reduced hrs and then take unpaid leave for a year. I don't really just want to leave, I've worked there for 12 years, hate the job but its secure and that's not easy to find nowadays!

Another week another email from the LA EHC team telling me who they can't ask advice from as part of DD2's needs assessment. I have already sent several emails detailing who I would like them to request information and advice from and why this is reasonable and lawful (using large chunks of IPSEA's model letter) but they maintain that they can only get information from services who have already had dealings with DD2. Contacted IPSEA through the Friday telephone support line and they were really helpful and confirmed my request is reasonable and the LA are not fulfilling their legal obligations so I will next write to the head of children's services over the weekend to complain.

DD2 started lessons for repeat Y11 this week and managed really well on Tuesday but struggled yesterday with high anxiety levels and had to cut the second lesson short unfortunately. She then slept badly waking me up at 3.30 am to tell me and have me hunt out her old pillow and consequently she feels too tired to do anything today.

Anything DH and I try and suggest she does is met with resistance or refusal. Persuaded her into the garden yesterday as per CAMHS consultant while she informed me it wouldn't help her or make her feel better. Got her out there again today and asked her to help me get washing of the line - she got her own as she can't stand touching anyone else's!

Everything is such hard work, such a battle. She hides in her room and avoids interaction with us as much as she can. Sometimes she tells us she hates feeling the way she does and she wants to get better and sometimes she agrees that she needs to try and do small things to try and help herself but she seems incapable most of the time. We are no further forward than this time last year and it is demoralising. We have no idea how to help her and trying to juggle her needs around work is difficult.

Moan over

Muddling- moan away, I'm here to offer solidarity!

All of what you say resonates, it is all so hard, I hope better times are to come for all our DC.

It sounds to me like you are doing a fabulous job and have made progress in getting advice, fighting for what's best and getting your DD into the garden and into school, even if it not as much progress as what you had hoped.

The fact your LA has even bothered to reply to your email, even if it is to say no, is one up on my LA, any emails are sent into a void never ever to be acknowledged -unless its the automated out of office email!

And it's really good she is going outside, I have failed on that score with my DD. Its hard when I'm working, I was saying to DH sometimes I feel I should give up work and concentrate on getting her better. If I'm working there's no way she will leave her room and go outside, it's a mammoth effort and all the phones calls, emails , meetings etc are a full time job in themselves. Like you say its hard to juggle and I often feel completely burnt out.
I feel guilty that things are sliding at home and at work, I feel there is never any time to relax and not worry .

We have been on this treadmill for almost exactly 2 years, this time last year I thought she would be " better" in a year, we'd found her a private psychiatrist and counseller after becoming desperate as CAMHs offering zero support.
We applied and finally got an EHCP but are fighting for specialist provision, and even when I finally find a school that has a pIace that I might be able to appeal for I can't get her there for taster days.
I am running out of things to try. Sometimes in the evenings she's chatty and relaxed, says shes going to school or will see friends the next day, but when it comes to it she is frozen in anxiety and I can't get her out the house. Appointments are missed and rescheduled again and again. Friendships are falling away. I don't know how to help her. sometimes I think she really wants to get better other times I think she's actually content laying in bed and isn't ready to challenge herself to take small steps to recovery.
It's so hard but I keep telling myself she will get through this somehow.

Zoo- I hope everything is OK with you and that you've had a good week.

Always Do you think MRC/LRM is the correct award? From your posts I would have hoped for HRC/LRM.

Those struggling balancing work and DC don't forget about parental leave. I couldn't juggle work and DC's needs, it's just not possible.

@1leapforward2back to be honest I was thinking we would get LRC so I'm happy with middle. I am just happy he qualified after hearing the nightmares people have with it.
No, I can't juggle work which is why I have been signed off with stress. I can't see me going back for a long time so it's just about weighing up my options.

@Runnerduck34 oh my goodness, I will try and be more appreciative that my LA responds in future - can't believe yours doesn't acknowledge emails at all, that's dreadful! Think our case coordinator has a diary note for Fridays that says "fob muddling off again"!!

Your DD and mine sound quite similar in some ways. DD2 doesn't have ASD diagnosis but she has been referred for assessment - no idea if she is or not (mainly because I don't have enough knowledge),

DD2 can sometimes be quite chatty and agree that she needs to try and challenge herself in small ways but this is rather fleeting. As for getting her into school - unfortunately not for a year. These lessons are online live 1:1 with her camera off (they are really good and I am so grateful) but sometimes unfortunately she sometimes can't even manage the hour sitting at the laptop down stairs due to anxiety (DH found her shaking and upset and unable to continue yesterday's lesson). And as for the garden - angry pacing wearing a comfort blanket and counting of the minutes until she thinks she's been there long enough. But better than nothing.

I have a (hopefully irrational) fear that we will fight really hard for DD2 and that she will be unable to engage with anything and will continue to hide in her bedroom away from life. I have thought it would be a lot easier not to have to worry about work too but I think there's a strong possibility that I'd just be hanging out with myself!

@1leapforward2back - hope your week has improved and you've caught up on rest. Parental leave is something I'm aware of thank you (and good to have the option) but requesting it would be a last resort for me. Work benefits me mentally, is P/T and we need the money. I've worked with my colleagues (friends) for over a decade and we manage quite a bit of flexibility as it is but it would be a struggle if any member of our very small team was absent for an extended period.

@Stilllivinginazoo - are you ok?

Standing in solidarity too runner and muddling, can identify with the freezing and just the general feeling that you can't get through to them. I'm still looking for that magical conversation that will resonate with ds, think I need to be more realistic where that is concerned!

And also juggling work, I love my job but feel like I'm easily distracted at the moment, spinning too many plates. However a few positive steps from ds this week, but I'm feeling frustrated after an unhelpful conversation with school earlier that makes me think their patience may be beginning to wane after he struggled to get in today.

Hope everyone has as restful (as possible) weekend.

hang we found a private psych appointment through a local private hospital (BMI) - it was a lot of detective work and we ended up seeing someone online (which was actually better for DD) from a random hospital at the other end of the country. He was excellent though - I was hugely impressed.

I managed a full day at work today (with DH at home) and I am shattered. I have shingles, and I also found out late last night that my DM, who has been downplaying a few chest pains, was actually in hospital awaiting 'minor' heart surgery. The universe feels a bit cruel at the moment - it would be nice if it could stop chucking shit at me.

DD's mood is a little bit lower today, but not bad. We saw her therapist (she's not really engaging with talking therapies) but he is delighted with how much progress she has made. She saw a friend today and is going to a friend's house tomorrow with a small group - not sure if she'll cope, but it's brilliant that she wants to try. We're going to start the meds on Sunday so that it doesn't throw her off.

I read a book last week that popped up on my feed called The Boy Between - for anyone else who's DC are struggling with depression it was a really informative and easy read.

Oh how crap bubbles I hope your dm is ok and the universe gives you a break

Brilliant that dd is wanting to see friends, if her therapist is pleased with her progress too that's even better.

Get better soon bubbles, shingles is the last thing you need, is there anyone who can help whilst you rest?
Although clearly not your mum, I hope her op goes well. Sometimes the universe conspires against us ,better times will come

@Runnerduck your DD sounds very similar to my Ds. He will come out with me to opticians etc. but any mention of seeing his school or his friends sends him into anxiety freefall. His school are doing Covid vaccs. next week, but he won't go. And I really don't want to pressure him. Even though he's happy playing online games with his friends.
I'm now really worried that this will go on for a long time & the medication won't work.

Commiserations to all other posters fighting long term problems as well.
All your descriptions & issues of your children sound so similar to mine.
I just find it so difficult to know how to help ds. Whenever I try to talk to him he turns away from me & often curls up in a ball in bed.

@Bubbles your DD definitely sounds like she's perking up. I'm so sorry that you've come down with shingles and your mum is ill at the moment.

@Fferny1 my ds also curls up in a ball in bed and "goes deaf" when I try to talk about school, so I know how helpless you feel. I try not to despair. Now that I have a plan about appealing the EHCP, I feel calmer. Need a miracle to get him back into school though.

Thanks for the commiserations - ups and downs here. DM is doing really well - at home with stent fitted, and feeling much better. But DD came out to walk the dogs this afternoon, and a wave of sadness came over her. I think she realised that she wasn't going to manage going to her friend's house this evening. It's the first big dip I've seen since the immediate aftermath of her suicide attempt, and of course DH is working away until tomorrow evening, with no mobile signal.

It's so hard to see her so distressed. I just hate the feeling of helplessness. She can't bear to be touched at the best of times, and it's so hard not to be able to give her a hug, or even just be alongside her.

Oh Bubbles, everything always happens at the same time. I hope you and DM continue to recover well.

Muddling my LA always email last thing on a Friday, obviously preventing dealing with a reply until after the weekend. When outside DS1 counts down the time until he can come back in. When in the garden we set a timer because his perception of time is way off and he argues over how long he's spent outside.

We took DS1&3 kayaking this afternoon. It's a brilliant place with amazingly inclusive staff who always give DS1 1:1. DS1 coped really well until 5 minutes before the end when he got splashed and ended up crying.

I do hope Zoo is OK.

leap the kayaking sounds amazing! Hopefully DS1 will remember the good bits.

How has everyone's weekend been? And the Monday back to school? Ours has been pretty wobbly, but it feels a bit calmer now. DD started her fluoxetine yesterday - she says she feels like her mood is down on where it has been. How quickly do side effects happen? I'm a bit worried if 2 x 1ml (4mg) doses are having an impact already...

First CAMHS appt tomorrow...

Good luck with the CAMHS appointment @Bubbleswithsqueak. At least that is progress! My weekend was OK as I had quite a few social things that took me out of the house. DS refused to come with me to a family garden party yesterday, so that was a bit sad. He hasn't gone into school today either. I ask him what he hopes will happen, and he doesn't know. He could be depressed, as he has no energy to get up and do anything. Just taking one day at a time...

No change here as Ds has another 3 weeks of sick leave. So I'm missing his school run. Ds1 boards so I dropped him back at school early this morning. After sorting him out with kit for his gold d of e this weekend. Thank god for Sports Direct!
I've also spent a few days trying to get a wee sample off dear dog. He's not cooperating at all. Looks mightily affronted every time i shove a pot under his undercarriage and stops mid-wee.

@Macnncheese ds often refuses to come to social things here too. In fact he's barely left the house all summer😢.
I've recently discovered he hasn't been washing his teeth. I remind him to shower every day but forgot to do it for his teeth.

Has anyone else found their child reverting back to not eating veggies?
I've started pureeing up all veggies again. He seems to like family size pots of things in the fridge he can help himself to. So I've made a big batch of chilli. Yesterday he had Mac n cheese.
I don't want him to live on meat, rice, noodles & Ice cream. All his comfort foods

Kayaking sounded great leap, it's so uplifting when you find an activity they enjoy!
Good luck with cahms tomorrow Bubble.
Ime side effects of medication happen pretty quickly and it takes a month or two to settle down so it's not easy but hang on in there, it's worth it in the long run, hopefully cahms can give some advice tomorrow .
Mackencheese ,DD often refuses to go out with us, it is sad, sometimes we can negotiate ,say we will leave after an hour, or have a quiet space she can escape too but she often still can't manage it.
Ferny, DD isn't brushing her teeth properly either, have to remind her but even when I do she says she'll do it later ( and probably doesnt)
I hope having time off school is helping DS.
DD is noticeably brighter when school isn't hanging over her, she is anxious about lots of things but school is the biggest worry and constant pressure.

Still sending emails re EHCP into a black hole. Feel I'm shouting into the wind and no one's listening.
I had a good weekend, saw friends Saturday evening and went to Chelsea flower show on sunday, but felt guilty as didn't get DD out the house at all- not that she minded!

She wasn't in school today due to dentist appointment ,so the battle commences again tomorrow ....

Runner don't feel guilty about enjoying your weekend. Sometimes it's needed.

Bubbles I hope your CAMHS appointment goes well. We found in the first few days things worsened before improving within 2 months. But before settling on Mirtazapine DS1 tried a couple of others which either had intolerable side effects or didn't help.

We've taken DS's kayaking a few times now, the centre are amazing with them. It's rare to find somewhere so accommodating. Enjoy is a bit strong, Runner, tolerates is closer to the mark. DS1 doesn't enjoy anything other than Lego really. The LA don't know it yet, but at the next AR I plan to push for it to be included instead of one of the physio sessions with the personal trainer.