Parent and carers of anxious teens(part 6)

[Stilllivinginazoo]

Another thread full!!
For anyone new,these threads started as my D's had crippling anxiety in year 8( and was later diagnosed ASD)now about to start 6th form in September we have been running this quite a while!
This is a safe space to discuss the overwhelm that can engulf us,seek advice and find friendship with others in a similar position.
Please note this is a non judgemental space and respect and care of each other is at the centre of what we are here for.
Whether you want to vent and run,or hang around a while,welcome!

bounce that does sound hard.

When's half term for everyone?my girls break Friday(well if they were attending)D's week after.
Dd2 hasn't been in since exams.ive said try back after half term.she went to Malvern on Saturday to meet a friend,walk the hills and stay air b+b,back yesterday.i find this extremely stressful as entire train ride in on constant text call21/2 hours)and constant texts whilst away too.sge loved the hike and quiet countryside but be away from me was very hard for her(cry self to sleep after friend drop off)and really struggled with eating,which given activity levels wasn't good.she was very emotional on her return and her tics horrific before fell asleep on me.im expecting full meltdown today fromtry be ok over weekend in front of friend hunk I'm go ask g.p for something today to calm her a bit/give her a break from her head and anxiety as very stressed 24/7
.

Lil zoo hasn't been at school more than one session if 2 hours since her assessment.cant get hols anyone to give us feedback (been 4 weeks now) and she's constant got tummyache and miserable.vamhs are offloading us as font feel they're helping.we have meet about this tom.school are champ at bit over attendance but I cannot drag he put if bed.i just don't know what to do with her☹️

Hi everyone, checking in here. Dd17 has had anxiety most of her school life that mostly stems from bad friendships and general fear of social situations. She has had an ED for the last year to add to the mix. It's been sheer hell for us as a family. The ED is kind of under control in that she does eat but has a lot of routines and rituals. However the anxiety has sky rocketed. She hadn't attended sixth form for about 2 months and before that was very part time. She rarely leaves the house but will occasionally see her friend. Those times when she's out for a couple of house are my only hope that she'll ever live normally again. Extended family have been dumped and even poor dh gets totally ignored. I have to do everything for her and advocate for her and it's exhausting me to the point I'm getting ill myself.

Am I enabling her? Her social anxiety means she won't go to any shops locally. We have a supermarket and city centre 10 minutes drive but we have to drive 30 minutes to an area she's comfortable with. I often find myself driving there and thinking 'wtf am I doing?'. It's obviously not helping the situation. I've talked to her about facing fears etc but she shuts down. She refuses counselling.

How can I get out of this situation now, where I am basically at her beck and call and enabling her anxiety to control our whole lives? I'm not working at the moment as had to stop due to her ED. Being available is obviously not helping but I still need to be around to ensure she eats.

I'm thoroughly fed up. I know you will all understand just how I feel. Any words of wisdom or success stories to keep me going?

We go to a mix of comfortable and uncomfortable shopping experiences.avoidance builds fear.we only do one simple task at hard places.lots reassurance and reminders it's just feelings and you are indeed safe and all is well.practise breathing exercises etc

Welcome Bagpuss. Is DD receiving any support? What about more indirect therapies e.g. animal assisted?

It’s a tightrope between pushing enough but not pushing too much it’s harmful. Over time you will get to know the signs in DD that indicate you have reached the tipping point.

With anxiety, social anxiety and an ED is DD possibility ND? Practically, you should apply for an EHCNA - on their website IPSEA have a model letter you can use. And apply for PIP if DD isn’t already in receipt of it. Have you had social care assessments?

Zoo I know I have said this before, but I really would apply for an EHCNA and also request medical needs tuition. I would check what DD3’s absences are being recorded as too.

DS’s are on half term next week, but DS2&3 are going away so just DS1 at home and some of his provision continues through the holidays. I am going to use the time to declutter the filing cabinets as paperwork is overflowing. I am going out for friend’s birthday too.

Good to hear you are having some time out from mum duties with your friend bounce
Is D's all better now?did you ever find out what was wrong?

Bagpuss I'm sorry if that sounds blunt now I've read it back.i had dd2 in my ear stressing and wasn't giving either my full attention 💐how are you managing the stress of it all(for yourself)

I spoke to the g.p today and he's agreed a short course of diazepam for dd2 just to give her a break from her own head for a couple of days.hes also agreeing the wait has been unacceptable for help and now she's 18 1/2 he's told us how to drop her off sertraline then prescribed Prozac whilst we wait adult services.

She's ultra anxious today,and my MH is struggling as she's all encompassing 24/7.im permanently exhausted and in need of naos and have no motivation left for anything ☹️

welcome@BagpussSaggyOldClothCat

Sounds like DD really needs professional help, is she seeing CAMHS? Medication can make a difference it takes time to find the right medication and right dose but it can really turn things around so that they can engage with therapies
It sounds very tough- My oldest DD had anorexia-she has now thankfully fully recovered -dont give up hope! My youngest DD is 15 and was diagnosed with autism last year after school refusing for 2 years, refusing to leave the house, withdrawing completely self harming.
With DD1 we were told very firmly by CAHMS not to compromise at all with food, I had to work out a meal plan- with CAMHS guidance and then we had to stick to it-zero compromise. It was hell and I had to give up work for a while to care for her- I was told by CAMHS that I had inadvertently enabled her behaviour, jumping through her hoops absolutely desperate to get her to eat. So the approach was very much compassion but do not compromise.
With DD3 and her anxiety and school avoidance, I tried a similar approach but tbh it back fired. She just withdrew further and further getting worse and worse, not washing , not even leaving her room apart from going to the loo. We had no real professional support and advice from a parenting support group was the complete opposite that I got from CAMHS for ED. Basically step back, zip it, remove all pressure and acknowledge and accept what is happening. With support of private clinical psychologist I told school I was going to stop getting her into school every day, which has allowed her MH (probably autism burn out) to recover. We applied for an EHCP and through appeal she now has something called Education Otherwise than at school- which is basically home tuition and therapies.
So I would say zero compromise on food but remove all other pressure and expectation. I like zoos idea of doing one easy thing in a difficult place and lots of praise. Once they've succeeded dont push for more or to stay longer-they wont trust you next time. And if they cant manage it thats fine too.
It is like walking a tightrope and its completely draining. Do try and take some time for yourself , a walk, a bath, just something for you.
She will get better but it is a long bumpy road, really push for as much help as you can get through CAMHS or consider private help if you can afford it and CAMHS wont help.
I echo bounces thoughts about Autism, probably worth reading up on girls and autism and see if it rings any bells.

How was today zoo?
my DD always crashes after a busy day but its brilliant DD2 went and I hope even though the constant phone calls were draining you got a good nights sleep DD2 has most probably finished most of her coursework for ALevels, could school send work home and can she revise at home, just to remove a bit of pressure on her to allow her to recover and to be in a good place for actual exams and/or just go in for selected lessons?

I hope you get lilzoos results soon and that when you get them she finds it helpful, perhaps the waiting is causing her even more anxiety? Her school sound very unsympathic, does lilzoo have an EHCP? It sounds like neither of the girls schools are right for them, although DD2 will be leaving soon.

Bounce- Its hard when you have an anxious DC who doesn't want their sibling to have friends round but I think your approach is right- its not fair on the sibling otherwise. I hope you have a good half term and enjoy your friends birthday:)

Zoo Good to hear the GP is being helpful.

DS1 is back to his normal self. We didn’t find out what was wrong. I presume a viral illness of some sort despite multiple negative viral swabs, but who knows.

Runner it sounds like you used the magic plate with DD1? That is what we use. No negotiations, bargaining, swapping etc. (we would be there all day!). We ignore whinging, discuss something else and praise behaviour we want. After 30 mins for meals and 20 for snacks their plate is removed without saying anything.

How is everyone? I hope half term is providing some relaxation.
Just came on here mainly to vent lol! I have just received our draft LGO decision and they did find the council at fault, but what Im fuming about is they have only offered £150 per month compensation for missed education and only for a limited time, as they cant back date my complaint to before January 2021 and they cant consider anything after September 21 as I had a right to appeal.
Although Im pleased they found in our favour- and I know it shouldnt be about compensation- the fact is the it would have cost the council a lot more than £150 a month to provide a suitable education- if she went to a specialist school the fees are over 40k pa so more than 1k a week , our EOTAS tutors charge £50 an hour so the compensation would pay for just 3 hours tuition a month.
In essence it is advantageous to the LA to avoid providing an education it saves them a lot of money. Its like parking your car , seeing it costs £5 an hour to park, you decide not to bother as theres a high probability you wont be caught and even if you are the fine is only 50p so why bother paying ??!!
Im also a bit confused as she says the LGO give compensation for missed education of between £100 and £300 a month but an earlier decision she referred to in her judgement gave compensation of £500 a month, which doesnt make sense- also Id read somewhere was up to a max £600 per month for missed education, but cant see where now! Anyway feels like a very hollow "victory".

runnerI'd also be fuming lovely.all the time and effort you have put in fighting for what's best for DD I would feel like that's a kick in the teeth too- as you say where the incentive for LA to provide adequate education's for all😤
DS has half term next week,DDS are off this one.
Dd2 not coping at all,sertraline reductions causing ridiculously high anxiety and agitation.diazapam hasn't helped.asd/ADHD assessment is 22nd,first app adult services 24th
Have meet assistant head about lil zoo attendance next month.camha meet yesterday discuss next steps as practitioner feels not in her best interests to continue she shutdown so an hour wasted which I warned him would be the case.im to email next week if she wants stop going or make goals and continue etc.her ASDresult is 21st
DS is plodding on , stressed and negative thinking still in full swing but had couple nice moments at school incl a walk at a deer park local to school which he enjoyed very much.
Things here are volatile with DD so stressed it's very full on.ive got a window and doors inspection ahead council starting work on fitting new ones today and when I start deep cleaning/try declutter discovered we have mould.so far lost my bed,chest drawers,and two book cases and a mirror so my room is just piles stuff everywhere.kids baby clothes were all mouldy(kept couple outfits so they got washed yesterday)most by beloved recipe books and favourite books also bit the dust so tired and upset with myself about that.living room has lost a book ase and I suspect TV units not good but I e not had time to tackle that!D's room faired best,just the windowsill on one gets black quickly and tiny bit on back of a storage cube that scrubbed off fine with. It of bleach.virls room was windows and lost a mirror(MDF back gets it) and some bits in cardboard box.
Combo exhausted and not cleaning enough and choosing feed kids exactly what want over heating.the house is horribly cold,always has been in winter and as messy pups we have laminate and cushion flooring so there's nothing that can absorb any moisture....
I'd best get up and continue sorting
Hope you all have a good day

We also sofa less at mo as the springs came thru!cost £250 have a man and van take them along mouldy furniture and bags of the dvds etc that were on bookcases downstairs.was good value for money for volume stuff taken but money I don't have and had to borrow.urgh

Zoo - I'm so sorry that mould spoiled some of your furniture and possessions especially clothes and cookery books. I hope the new windows and doors resolves the problem as mould not good for any of you. Sorry too that DD2 is struggling so much and hope the appointment with adult services and ASD/ADHD assessments help. Can CAMHS vary the approach they take with DD3 if they don't feel the current one is working? I would hope they would try and tailor sessions according to her needs and it seems unfair to have rigid expectations of what she can manage. When DD2 was under CAMHS (now 18 so sees mental health professional at GP surgery) it was felt that CBT would be too intensive for her to cope with and care coordinator took a gentler approach combining elements of different techniques to try and get DD2 to open up and respond to her. She also reduced session times from 30 minutes to 20 minutes as that was all DD2 could cope with. It did seem to help.

Runner vent away! I would be hugely frustrated too - as you say where's the incentive for LA's to do the right thing in the future when they know the compensation (which I imagine very few parents pursue) will be nothing compared with the cost of providing the education they should have in the first place!

Muddling good to ‘see’ you. I hope everything is OK with you.

Runner That’s disappointing. £600 is from the LGO’s remedy guidance. The normal starting range is £200-£600 per month depending on numerous factors. We got £2k in total. LAs will continue while ever there’s no serious repercussions.

Zoo sorry to hear about the mould and ruined possessions. I hope the new windows and doors help.

Are you claiming everything you are entitled to? If you haven’t switched to UC yet check whether you would be better off, many with disabled DC are. If you would like help with checking or signposting to grants etc. I’m happy to help. Have you applied for DLA for DD3?

Rather than discharge DD3 CAMHS should be adjusting their offer, referring onwards if necessary, so DD can engage. DD3 should be receiving medical needs tuition, and I really think an EHCP is needed.

Half term is going OK here. DS1 and I went to a SEN soft play session. Despite being a teen he loves soft play as long as it’s quiet enough for him. Obviously not going to happen, but he would enjoy having the place to himself without other children.

Bounce things are ok here thank you. DD2 is managing much more now than she was a year ago which is great and she seems happier overall. She has been doing travel training with her placement and she's also decided to join in with a residential trip in a couple of months time much to my surprise!

She's just had a diagnosis of ASD - I felt relieved and emotional at the same time (not sure why emotional).

CAMHS discharged at 18 and didn't feel adult services were needed so DD2 sees mental health professional via GP every few weeks. I have found that I need to attend with DD as she tends to say everything is fine (I think because she is much happier) and things are much improved but she doesn't realise quite how small her world is and needs me to gently point out that she spends nearly all her time in her room and rarely eats with us, couldn't attend appointments by herself as wouldn't walk there alone etc. I probably need to encourage/push a bit more.

In other news I need to lose weight and was having success with WW last year but I can't seem to get back on track at the moment and keep eating all the wrong things! I have told myself to have a fresh start on Monday but that means I will have to miss out on pancakes.

Half-term for DD2 next week.

Muddling that is amazing progress and lovely to hear. Finding diagnosis emotional is normal even if you were expecting it. Does DD have MH provision in her EHCP?

I’m with you on the last paragraph. I really need to lose weight. I start well but quickly fall off the wagon.

Bounce there are no specific therapies built in to the EHCP (MH or otherwise) - additional assessments and additional funded provision is where we tried and failed and ultimately gave up fighting as they LA threatened to remove the provision DD was currently benefitting from if we appealed (when she was about to sit GCSE's at home). The placement she started attending in September focuses largely on improving students' MH with regular wellbeing and personal development sessions and helping understanding emotions and self-regulation (zones of regulation used), building confidence an overcoming anxiety. The staff/pupil ratio is high and in my experience so far, DD is benefitting from an individualised approach. The teaching staff are lovely kind people who seem to "get" DD2. I'm unsure what else might be helpful at the moment but open to suggestions. We could perhaps pay for therapies outside of her placement but I'm not sure what she would benefit from. She has self-funded computer games mentoring sessions and really enjoys them (you gave me than information about a year ago - thank you).

A takeaway was consumed in our house last night after DD2 returned late from a trip to a major city with her placement - I really must be strong-willed next week!

I’m glad the placement is working well. At the next AR I would pursue therapies - OT, SALT and some form of MH therapy (depending on DD’s interests something like art or animal therapy maybe). You don’t need to pay for them yourself. The mentoring is brilliant isn’t it? That can be funded via the EHCP too.

Thanks all for listening to my rant. I can reply to draft decision so will read the remedial guidance first, I wonder if £150 is because DD was still sporadically attending school for 2-3 hours a week and they think she wouldnt manage full time education anyway?

Zoo Im so sorry you're having such a trying time. I hope you get some new windows and doors .It must be so upsetting about the mould on top of everything else ,you have so much to cope with , please dont beat yourself up over it`- for what is worth I think youre bloomin amazing! Take up Bounces offer for help with looking at benefits- I know its daunting. I think my older DD needs to apply for PIP but we've been putting it off for months.
I hope DD2s upcoming appointments go well and are helpful for her and CAMHS can make adjustments for lilzoo,, theyve been pretty useless with my DD but muddlings experience sounds so much better- a postcode lottery perhaps?

Muddling and Bounce-can I ask about the computer game mentoring sessions? Is it Mind Jam? i have tried to contact them a few times but have had no response.

Muddling -Im please things are going so well for your DD , thats so good to hear-her placement sounds amazing, I am a bit shocked at your LA in effect blackmailing you not to appeal. TBH Im a also a bit wary of rocking the boat too much too!

I also have a lot of weight to loose, I was doing ok before xmas but havent managed to get back on the boat since. Too much comfort eating going on!

Runner yes Mindjam. I know they have a waiting list but I'm surprised you haven't heard back as I've always found them to be good with communication. I will check email addresses as I think some might have been updated recently.

It was a veiled threat from the LA dressed up as helpful information and concern really eg "if you want us to look into these options we'll have to take it up with managers and you need to be aware that DD will lose what she's getting now while we do that." Same with reports and adding provision to the EHCP Bounce - every additional assessment I requested was refused on the grounds that the EHCP team can't refer children to services! I did complain to the Director of Childrens Services and got a reply to say that usually by the time a young person got to EHCNA their needs would already have been identified and help from services given!! We did have an NHS SaLT report with some suggestions and these were added into the EHCP but no suggestion of who would carry them out. OT came rather late and wasn't particularly helpful anyway. I did request that the mentoring sessions be funded/provided as part of the EHCP but was ignored (and TBH I don't have any reports saying DD needs them).

I'm afraid I gave up at that point and took what we'd got and then we found a placement that felt right and DD actually wanted to attend. I really admire you Runner for carrying on fighting for your DD and winning!

DD2 gets PIP and we use some of it to fund the mentoring sessions. Completing the PIP form was quite a lengthy task but there's a lot of help out there. I am DD's appointee as advised previously I think by Bounce.

Runner as well as a postcode lottery I think it depends on the HCP themselves. The tier 3 team DS1 was originally under were useless, but he was referred on to tier 4 which are helpful and understanding.

DD sometimes attending would reduce the remedy figure, but even then £150 is low in my experience.

It’s a shame you haven’t heard back from Mindjam. I know they have a waiting list but, like Muddling, I am surprised you haven’t heard back. It’s worth trying again. There’s also Gecko you provide something similar.

Muddling The EHCP team can refer for assessments, if they can’t assess in house or via the NHS they must commission independent assessments. They can’t refuse to provide provision within F whilst you are appealing either. If I remember correctly the problem was the provision was receiving the. wasn’t specified and quantified in F, therefore you were beholden to LA goodwill? Your LA has gone downhill fast over the last year, they are in chaos.

Muddling Have you also asked for a credits only New Style ESA claim? To establish LCWRA in preparation for being able to claim UC. Runner I can’t re her whether DD is already 16 or not, but this is something you will want to do when DD is 16. Zoo you should do the same for DS and DD2 too.

Bounce - no I haven't, should I have (ESA)? I remember looking at UC when DD was awarded PIP but I'd left it too late and something had changed in the criteria for 16 & 17 year olds claiming. DD is now 18. I will look this up thank you.

That's interesting that our LA is in chaos. I would be interested in reading more if you could point me in the right direction time allowing. I have been told that they can not cope with the volume of EHCP applications and are months behind and perhaps that explains why our new EHCP coordinator does not respond to emails.

I was aware that new assessments could be requested during the EHCNA and I specifically requested them and went back and forth quoting the law/guidance (used IPSEA) to them but I was banging my head against a brick wall.

It took a while for DD to be allocated to a care coordinator but everyone we met was helpful and accessible. Her care coordinator even did a home visit on one occasion when DD couldn't manage to go in person. I know people within the same area who have not had such a good experience so maybe luck/postcode lottery?

Last paragraph was referring to CAMHS!

The rules on disabled young people in full time education claiming UC did change, but in some circumstances they can still claim.

One of these circumstances is where LCWRA has been established prior to the start of the course. So DD couldn’t claim UC now as she is mid course and LCWRA hasn’t already been established. But, in order to establish LCWRA prior to the start of whenever DD changes course you ask for a credits only New Style ESA claim. DD will not receive any monies as it’s a credits only claim, and because of this if you receive UC/CTC/CB they won’t stop.

Contact have more information here and their leaflet here.

I don’t have any specific articles on your LA’s chaos as my knowledge is from helping a couple of others in your LA with EHCPs and speaking to someone else on MN. They recruited someone to get on top of spiralling costs which has resulted in provision not being provided more often, timescales being breached more often, a higher staff turnover, lower morale. Someone I was helping had their section F left blank! Apparently they aren’t the only ones. I hear a complaint may have been part of the reason for CS (I will email their full name if you can’t work it out) leaving.

Thanks for the ESA information. I will look at the Contact site. It is possible DD won't need to claim UC though I suppose but then again she might.

Interesting info and yes that's jogged my memory. My complaint went to CS.

I would apply anyway. As far as DD2 has come I think it is unlikely she is going to be able to cope with a full time job at the end of the current course (and the EHCP could still be in place until 25 or 26 depending on circumstances).