Parents and carers of anxious kids/teens(part5)

[Stilllivinginazoo]

Hi guys
Just spotted we have filled another thread!
I started part 1 during the journey with my sons escalating anxiety
This thread is a non judgemental place to support each other
As parents and carers we recognise how hard,stressful,and often lonely,this unseen battle can be.others dismissing small wins as the norm for most etc
Please feel free to offload here,share your small wins,take the support and comfort this thread brings

Well done runner

@Runnerduck34 well done on today, fingers crossed for 2 weeks time.

Runner that sounds like a good outcome. Hopefully the wait won’t be too long. The 10 hour rule is unlawful. DS1’s EOTAS package is for 25 hours split into 12 hours 1:1 tuition and 13 hours of other provision.

Thanks everyone, that's interesting twirl as one of the panel members mentioned 25 hours, they were perplexed as to why we asked for 10 hours.

Runner 22-25 hours is what the LGO consider full time education, 25 hours is the amount for KS4.

25hrs is just the direct provision in his package. On top of that he has 12hrs HLTA to cover the second adult for provision and travel time outside the home. It also includes time for: planning, supervision, termly reviews/AR, professionals to review DS1/write reports and a professional to lead/oversee the package.

Speaking of the LGO, once the tribunal is settled think about complaining to the LA and then complaining to the LGO. You would have a good case.

@Runnerduck34 thats great news, I’m a little bit lost with the acronyms as I’m Scottish so not sure of the English system

thanks for the commiserations I’m ok about it. Just counting down the days to out holiday now, DD1 will need a lot of support but at least I’ll be by her side to help her

Sweetkitty I hope you enjoy your holiday. If you are flying speak to the airport/airline about adjustments to help DD.

LA is Local Authority same as in Scotland.

LGO is Local Government and Social Care Ombudsman. If you aren’t happy with the response to a complaint to the LA you can complain to the LGO. The Scottish equivalent is the Scottish Public Services Ombudsman (SPSO).

EOTAS is Education Other/wise Than At School. Where a pupil receives education outside of a traditional school setting. A minority of pupils have this in Scotland too.

AR is annual review of the EHCP (English equivalent of Scotland’s CSP).
HLTA is higher level teaching assistant.
KS4 is Year 10&11 aged 14-16.

runner that's fab news
Kitty sorry the interview didn't go well.are you travelling abroad in on holiday?

Thanks for the acronym glossary, I’m actually a SEN primary teacher so know all about CSPs etc. (And unfortunately the severe lack of funding). Yes we are going to Spain on holiday, we have been to this resort before and DD1 loves it, DD2 however has autism and hates the heat but she’s only 16 so can’t be left alone yet. I’ve said instead of sitting in her bedroom on her iPad she can sit in the hotel room with the air con.

Hope you enjoy the trip kitty

We had a dreadful day yesterday with dd2.she had a meeting at school spring upon her to sort out scheduling revision/manage workload better(it was arranged for Monday,but she emailed teacher involved who didn't reply so she came home for her frees and the head of year rounded on her yesterday for not attending...)
She was informed she needed to work in frees,dismissing her need to recalibrate from classes previous and that needs to be doing X amount 3x a week afterschool.whilst I appreciate in normal circs this us more than reasonable to DD it was too much,esp when she criticized her attendance and made very clear she Had to attend no matter what.dd rang me after in tears and when she got in flop in bed unable to speak or move til 10 pm she was so exhausted just be in school for a whole day(teacher made clear she was not to leave )she cried over an hour when surfaced at 10pm and then found herself so tired eat was all too much effort her moods in tailspin and anxiety us more than she can bare.awful watch her in such state.shes no better today so I refused send her emailing head year why.as she's got severe depression and anxiety and awaiting ASD assessment I'd expected better handling...

Zoo, that's terrible! I'm so sorry ( and fuming!) for DD , the school showed real lack of understanding and this could set her back, I would complain.
Is there any professional that could tell the school she needs down time in between lessons?

Zoo - that’s rubbish, the school are so at fault and not being understanding at all. Bothe DD1 and 2s schools were very good with DD1s anxiety and DD2s ASD giving them time away from classes and school when they needed it. DD1s school arranged from a safe space and a counsellor for her when she was still attending. I would be having stern conversations.

DH and I had heated discussions tonight about DD1, DD1 wants to apply for a Modern Apprentice starting in August DH thinks it’s a very bad idea as she can’t get out her bed before midday. DD1s counsellor has said she needs a reading to get up and out the house. DH then ranted that it’s a bad idea she’s not ready etc etc. I said we’ve got to allow her to try at least. His thing if she tries and fails it will be like school but she can’t just stay at home in her bed?!

For what its worth sweetkitty I think you are right and DD should apply for apprenticeships if that's what she wants.
Maybe it won't work out but you don't know until you try and it's fabulous she wants to give it a go so I would be encouraging and supporting her. It might increase her self esteem and give her structure.
Applying also gives her an element of control and agency which is also good for MH.
It is hard when parents are on different pages.
Hope its calmer now.

I totally agree with runner" about letting her try kitty*
Having a goal might give her some focus

Zoo I'm so sorry to hear about DD2 - she is going through so much. Any idea where you are on the ASD assessment waiting list? I hope things have calmed and that DS continues to progress through English!

Runner sounds like a very good outcome - hope it is one of many!

Kitty have a lovely and well-rested holiday.

Twirl how are things with you?

Hi DD1 had a CAHMs appt today this will be her second last one as she turns 18 soon and will transfer to adult mental health services. She also phoned the GP and said she argued for 5 mins for her to prescribe ADs. GP said she was reluctant as she’s not 18 (less than a month away) and she needs a referral from a physiatrist but CAHMs won’t refer her to one as she’s almost 18 😡 there’s no continuity of care either. I used to see one GP every month pre Covid, now it’s triage on the day phone call appointments only different person every time it’s rubbish. Especially for an anxious 17 year old. I just feel that these young people who have been so affected by covid, have been let down so much

Viking it is lovely to see you. I hope you are keeping well. How are DS’s? We are OK, DS1 is waiting for a suitable hospital bed to become available for his medical condition but other than that life is pretty settled at the moment. We are trialing another medication for sleep, it’s only been a couple of days but it seems to be helping somewhat with no serious side effects.

Sweetkitty enjoy your holiday. I agree with you about the apprenticeship. Nothing is going to change unless something changes and perhaps the apprenticeship is the change that will be the starting point. The GP’s reluctance stems from following the NICE guidelines which state antidepressants should only be initiated by a child and adolescent psychiatrist and also only in conjunction with therapy.


Zoo how is DD2 at school since?

vikinglovely to hear from you.hoe are your boys?
Twirl any improvement in sleep us a huge bonus.keeping everything crossed it buys you some more precious rest

I sent aVery Snotty email to HOY over dd2 meeting..she was due back in full time this week.did Monday(finish at lunch anyway,ditto tuesday)
Today has meet that teacher again.something mustve been said as she back pedalled on a lot what she had said was necessary.another bonus is nice weather means during frees she escaped to nature reserve right next door and sat in shade soaking up some calm nature.

she had history this afternoon.her teachers fab,streaming online if she's not in.he must've seen her struggling with revision lesson today as asked her after class needs help with anything and has happily agreed go over some things with her next Monday afternoon.
A level mocks are next week so stress levels are reaching heights I never knew were possible.we also have fallout result repeating a year as rest year she grew up with are planning exciting summers of trips and fun ahead of uni now,so she's feeling very left out and left behind☹️
I've pointed out many times everyone's paths are different and there's no set pace,she will get where she needs to be in time but to all teens that can be a hard thing to get heads around

Zoo that must be difficult for DD seeing the others finish sixth form.

Without wishing to speak too soon I think we have found a medication that helps. Last night, for the first time ever, DS1 slept for 2 straight hours without waking up. Tonight he was fast asleep for just gone 9.

Twirl that's very encouraging about new medication, hope it makes a difference you must all be exhausted. I hope DS1 is OK.

Zoo, DDs history teacher sounds fab, I hope mocks go well. My eldest DD repeated a year, now is the hardest bit but once they've left it settles down and she will start to form stronger bonds with friends in her new year group. I hope it works out for her, I admire her grit, she sounds very determined .

Hello Viking, nice to hear from you, hope everything is OK with you.

Hello, how is everyone doing?
Twirl - I hope DS1 is OK ,has he been found a hospital bed yet?

We are jogging along. Dd anxious about tribunal decision, I'm getting impatient.
Was told at end of the hearing we would hear within 10 working days which was up on Tuesday , just phoned tribunal to chase and been to it could take up to 20 working days because they are so busy😧
Then of course I have to rely on my LA to implement it with 5 weeks which I am fully expecting to be a joke....
Patience is a virture I dont possess !

Hope all well today. I have popped back to say hello and update on where we are with DD1. She's completed her GCSES and hasn't self harmed for 13 weeks, which is the longest period since late 2019. Still working through a CAMHS programme which is likely to last several more months. I'm sincerely hoping we have turned a corner though there's a lot of healing to be done.

Thats great news Teelizzy, I hope you both have a lovely summer. Im pleased CAMHS are offering her a programme, our CAMHS are rubbish, DD has been offered virtually nothing, I keep thinking we should push harder it , its virtually bankrupted us going private!

tee it is lovely to hear your positive update.

Runner patience is something I am short of these days too. All being well DS1 is booked in for next week. It’s not urgent which is why there’s a wait for a suitable bed and all being well he will only need it one night then we can continue his IV antibiotics at home but has to be booked in for 2 weeks just in case.

@Runnerduck34 it took ages, DD1's issues started a few months before the pandemic and until this came through in ?October last year CAMHS support was either Crisis (A&E) or endless let downs. We too spent £££££ on private support.

@1twirlforward2back thank you