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!

Runner without seeing the specific wording I think from your posts you will be able to enforce the 17 hours tuition as actual tuition. I also think you will be able to enforce the OT.

I am unsure whether you will be able to enforce the calming and anxiety reducing therapies/strategies and the organisation and planning skills because they sound quite woolly. That’s not to say they should be part of the 17 hours, just unless the wording is tighter I think you might struggle to enforce them - which is a separate point to them being included in the 17 hours.

Although at the next AR it is worth trying to specify what tuition will cover. For example, at the last AR DS1’s tuition hours increased to 15 and it specifies that to be: 3 hours English. 2 hours each of maths, biology, chemistry, physics. 1 hour each of history, geography, RS, computing. By subject specialist teachers. (There’s a lack of more creative subjects on purpose as DS1 hates them.)

Keep trying with IPSEA and SOSSEN.

Zoo I hope DS got off to school OK today. Has DD2 ever seen an OT?

He has had huge panic at school,very miserable now(texting on way home in taxi)
DD has never seen OT.shoukd she have?

An OT could help DD learn self regulation techniques.

What triggered the panic attack?

zoo - I hope DS is ok and you have a calm evening

Thanks bounce- the wording probably is wooly! it was paraphrased by LA from the EP report, its something that was in DDs EHCP from version 1 and never contested or changed, the provision description is a bit non specfic :
Calming and anxiety reducing strategies that integrate the mind and body, techniques such as relaxation, mindfulness, meditation, and yoga should be explored. Learning cognitive behavioural techniques for managing symptoms of anxiety would be of benefit
But on the corresponding how often column it says Individual and small group interventions of at least 5 hours per week and for who by it says staff trained and experienced in supporting DC with ASC and anxiety.
For organisation and planning it says Individual sessions to support DD with her organisation and planning of work and activities -Minimum 45 minutes each session, one session per week

Also have learnt today that the LAs independent travel team are unable to carry out the Independent travel training specified in her EHCP as we live in a village with no public transport, our PB request was turned down for this as LA said they can provide it.

I HATE EHCPS!!!!!

Just so cross that after a year of going through the tribunal process, and winning the appeal in July Im still having discussions like this with LA
Sorry this is my rant over!!

Will have sossen on speed dial for this evenings helpline and see what they say but think I soon reach the point when I need to move on try and get my life back!

RunnerI cannot articulate my anger and disappointment on your behalf.your LA are a bloody nightmare 💐
Bouncehe got overwhelmed by volume kids in his ceramic class(his favourite class so far so was very upset about it) then started to get too warm.he told teacher was stepping out and literally stepped out into the courtyard for about 15 minutes and just sat on a bench..he knew had go back in so once he wasn't as hot anymore went back in.was miserable he spoilt his favourite class and everyone was very loud.hes very anxious tonight.i think having only attended wed,Thurs,Fri then Mon ,Tues and wed following week before a migraine struck then two weeks half term he's not had chance settle in but plenty time to frenzy himself overthinking....

Runner The wording shouldn’t have been paraphrased from reports.

I know how exhausting it is and how tempting it is to give up and just accept what you have, but please don’t do that after getting this far. With all the support in place life will improve for the whole family. If you do stop LA won’t stop with what they are doing at the moment, they will gradually erode all the provision.

Unfortunately the wording is fairly woolly - “such as” (doesn’t mean any of them will actually be provided.) “should be explored” (doesn’t mean it must be provided) “would be of benefit” (but doesn’t say it must be provided) “small group” (your definition of small will be vastly different to the LA’s) “staff trained and experienced in supporting DC with ASC and anxiety.” (What training and experience). However, the 5 hours isn’t woolly. For organisation and planning it doesn’t specifically say what will be delivered.


Independent travel training could still be provided from a more central point. But if you want a PB go back to the LA and now demand one. The travel training must be provided anyway regardless of how they fund it.

Zoo have you spoken to the school about DS struggling with the noise? Does he have any OT in his EHCP? You’re right, it’s still early days and settling will take time. Going back into the class off his own back is actually a positive step forward.

Thank you bounce- feeling a bit more positive today- I think that LA are giving us the run around and being a bit devious and underhand.
Chased DDs transport , the phone line clearly goes through to a contact centre and who say they cant access the system to see when a referral was received or its status and referrals take a minimum of 6 weeks! I asked if I could be put through to anyone who could check and was asked why I wanted to check- where do I even start?!? I was on hold to be transferred when the call was disconnected....
Anyway I did manage to get through to SOSSEN who were very helpful and looked at the EHCP they think some of the outstanding provision may be suitable to JR and have said to submit a request for a preaction letter, which ive done.

Zoo, pretty sure you would have already considered this but would he wear ear defenders of some of those smaller ear plugs that go into the ear to dampen noise? Definitely worth contacting school so they are aware DS is finding it difficult, he handled it really well

Runner devious and underhand describes most LAs, I think, at least some of the time. I’m glad you managed to speak to SOSSEN and they were helpful, unlike the LA’s transport team. Cynically I suspect you weren’t accidentally disconnected.

DS3 had a difficult day at school. One of ‘his’ 1:1s is going on maternity leave at Christmas and he is beginning to spend time with the person who will be providing the cover. An internal member of staff is going to cover rather than the recruited maternity cover so he can do a slower transition but DS3 is finding the change difficult.

Runner* glad at least sossen were helpful.
Bounce new transitions are bloody hard work.at least it's been given plenty of time for adjustment.

DS had a better day.animal care ment time with beloved horses.he still struggling to find positives,but says it was a better day there than yesterday but still an effort and it's on reflection once home he hates it even more!

Dd2 didn't go in today,she was in way too much of a state.shes in meltdown currently humming,rocking and flapping chewing on a wooden piece of cutlery☹️I "think" the candy apple she had with dinner has messed with reflux and the sensations are getting to her.shes not really coherent enough to be certain.ive given her a pack of playing cards to sort into suits then into numerical order to try and pull her down a little(worked last night,and once was down a little from high alert she lay on me and we watched the gruffalo on her laptop.shes asked to watch room on a broom tonight.she finds children's shows relaxing and very nostalgic.i enjoy reminiscing with her but also feel sad at over 18 1/2she takes so much comfort from such childlike things(she also has obsession with those squishmallows soft toys)

Bounce, I hope DS3s transition goes as smoothly as possible. Change is hard but it's positive it can be done gradually. Fingers crossed he likes the new person.

Zoo- I really feel for your poor DD. You have some great strategies to calm her down, your love and experience shine through.
I love the idea about playing cards and completely get why watching favourite TV shows from childhood can be soothing. Theres nothing wrong with that! Tbh I wouldn't be adverse to sitting didn't right now and watching Jamie and the magic torch!

How is everyone?

Zoo what does DS do of an evening? What’s he like if he/his minds is kept occupied thereby preventing him spending too much time dissecting the day and focusing on the negatives?

I hate fireworks, DS1 can’t cope with them at all. I had to give him some of the Lorazepam we have for crises as he was so distressed.

bounce D's hates fireworks too..luckily this year the combo of headphones and dad be here was adequate distraction he was twitchy but not full blown distressed.
He gets in around 430/445 and has snack.
5pm-7. Allowed play on his PS.
7PM dinner.
730/8 ment have a shower(does every few days when I nag enough he smells☹️)
After that ment to colour/read/listen audio stuff and "try" to settle about 930/10 as I have to wake him just after 6 as has to be ready by 720 and he needs time to wake up properly these days..
Reality he scrolls on phone upstairs and rings dad 1030 on to chat as he's home from work then.no amount nagging has been successful changing this<am open to ideas>

Sorry to hear that bonfire night and fireworks are so difficult to cope with zoo and bounce, coming so soon after Halloween trick and treaters it must have been it a difficult week.
Hopefully next week will be better!
How are they over Xmas? I know that can be sometimes difficult too.
DD2 used to absolutely hate fireworks but now at 19 seems to enjoy them, we actually managed a family trip to a local fireworks night and had a good time.
My weeks has been mixed. DD 3 is did really well this week and managed all her tuition and therapies.
She has said she would like to do GCSE sociology which is amazing but unfortunately the tuition centre she goes to only do pearson exams and sociology is AQA. We have a PB for tuition so in theory can look elsewhere just not sure how ! And also how to find an exam centre particularly as she needs extra time/ breaks.
Eotas is fantastic for her but undoubtedly a lot of work.
Sossen came back and told us that they dont think JR is suitable after all as the 5 hours calming and relaxation strategies, thrive etc should come under her 17 hours of tuition after all .
Which is disappointing and a bit frustrating as we thought it was extra hours but i actually also a bit of relief and pressure lifting !
I am really very worried about DD2 who is 19. She has autism and has always been a very picky eater but she but she is eating less and less , doesnt like any foods and looks very very slim/ gaunt.
She has agreed to go to GP , I hope they can help.
I wonder if she has AFRID that may be merging into an ED .
My eldest DD had anorexia and that was a traumatic journey although she's now recovered and doing well.
I just dont know how much more I can take.
Hope GP can make a referral.
Just feel its never-ending worry and stress.
Sorry that's a long post and I'm ranting a bit. X

Runnernever apologise for letting go of things here my love.id be worried too by that.lil zoo has "disordered eating" and that's stressful enough.is it particular textures?all mine have specifics there..lil zoo especially likes crunch and hates bland things,D's hates chewy or hot spicy.dd2 likes bland and dry...makes meal times "interesting" when they are having difficult days and want their favourite preferences!
Well done dd3 managing everything this week❤️

Dd2 has not had a good day.huge tic attack in Asda humming sounds and flailing limbs..she stressed not at school/doing work since Wednesday last week.attfmpred some work.massivd panic that ended up walking in dark around streets with her using cold air to rein her in.its like she's on constant edge overwhelm.i looked up ASD burnout and sounds like that,but seems unable to reset herself☹️

Zoo personally I would try keeping DS busier rather than allowing him to spend too long on the PS and phone upstairs, as they give him too much time to overthink on his own, dissect the day and focus on the negatives. By all means allow some time to decompress on the PS/phone but you could try other things that would keep him busy without allowing time to overthink the day e.g. a board game, Lego, craft kit, a walk or do you have a trampoline or exercise bike or something similar (whatever would interest DS). CAMHS would also probably suggest removing the phone at bedtime.

Runner Lovely to hear DD3 managed tuition and therapies this week. A shame about the 5 hours, from the bits you posted here the wording is rather woolly which I think it probably the sticking point. Having been through it previously I can understand your worry for DD2, I hope the GP appointment goes OK - ARFID is an ED.

If the tuition centre won’t do AQA exams you could ask local schools if they accept private candidates, a few in your LA do. If you do this I would start with schools that already offer sociology as they are more likely to accept private candidates for exams they are already running. Some will offer access arrangements if you book early enough. If you know anyone in the EHE community they may know who takes private candidates, too. Alternatively Tutor and Exams offer GCSE sociology but I think your nearest centre is in London. Access arrangements are offered there if you book early enough.

You’re right about EOTAS being more work. It’s a couple of years away but we have tentatively spoken to our LA about GCSEs. It may be possible for DS1 to sit them as via the local hospital school service or a local LA SS, but with home invigilation. If not we will have to look at other centres.

DS1&3 cope reasonably OK with Christmas if we manage it well. They need to know the plans and outings/visitors need to be carefully managed. We wouldn’t take DS1 in particular to anywhere busy over the festive period as he just wouldn’t cope, not that we take him to busy places anyway but more places are busy at that time of year.

This year we are hosting a friend, my brother, SIL and DNs as well as SIL’s DM. DS’s know everyone well except SIL’s DM so I’m hoping it goes well, and if DS1&3 need to escape they will be able to. DD2 loves cooking, plans on taking over the kitchen as she often does when home and is planning the menu!

That was a long rambling post, sorry.

Xmas plan sounds lovely bounce
I know I need to be firmer,just need final mental resources for it all.dd2 had huge meltodown yesterday afternoon.she puts the rubbish in the outside bin and I gave her multiple steps to it(pick up x,check there's no empty loo rolls to add to recycling,have you emptied your bedroom bin etc) normally she will trot off and return to check she remembered them all.todat she flipped her lid confused and stressed.we had tears,load tic noises and then shutdown for 2hours of no speaking AT ALL incl a huge panic attack which was highly frustrating as expected me to know what to do to help but wouldn't communicate<sigh>.climbed on me on sofa ar 8 pm and is still on me now(about to get up) i think she actually settled around 1030/11....

Lil zoo has camhs today.first app with CBT

*CBT she prepared work with them on social anxiety but shuts down the loo issues,so not sure the benefit tbh but they hoping to gain some trust and get her talking.good luck with that...

It wasn't a rambling post at all bounce.
Thank you all for your support advice.
Zoo how did lilzoo camhs appointment go?
Things sound very difficult with DD2 atm, is she getting any professional support?
I hope you have a restful evening.

runner first three are just "get to know eachother" appointments so was fine.
Dd2 has discovered latchhook kit is quite a nice distraction(bought and been sit in some drawers for a long time).she did a few rows whilst we watched overboard film tonight.cyrremtly asleep on me,she's adamant has Togo school as three weeks behind on revision,has 3 weeks to complete personal statements hasn't even made any headway with this far and is behind in coursework everytime starts any panic engulfs her.im not expecting an easy day,it's frustrating knowing it's a flashpoint but understand she wants to do well I do admire her determination.
Will just have to wait and see how the day plays out

Zoo- pleased things sound calmer.
I always wonder how you cope when DD sleeps on you, sounds very uncomfortable for you!
On the personal statement front I would try and not stress too much about it.
Schools put a big emphasis on it but tbh I think unless you are going to Russell group uni or a doing a competitive course then they aren't as important as what they make out. When I was looking at round unis with my dc we even had a couple of unis that admitted they never even read the personal statements!!
Obviously you can't risk it -so has to be fairly good but may not be as crucial as DD thinks as long you get something in thats reasonable .

Zoo If it wasn’t for DD2 and DS’s would gladly hibernate for the whole festive period.

I agree with Runner about the personal statement, many universities don’t pay much attention to it. Having said that do you think university is a realistic option for DD2 at the moment?

BounceI don't think realistically it is.she will have to compromise and do a local one,when her "perfect" one is just over an hour away(but a commute would be nearly 3hours by train as it goes via london and too expensive to consider).she is adamant as gave up a year to repeat 12 she's not go get even further behind taking another year out.plus she's not fit to work,so what would she do?☹️
She did attend school.history double wasn't too bad.emglish double she was mute and did nothing as was too much by then came home at lunch as frees pm.was more exhausted and still then anxious but when attempted do coursework she started to panic too much and had to stop.tried again to revise,froze.lots tears.mute all evening.slept on me.was very restless last night so I'm super tired today.
She has no energy for even speaking this morning so I don't consider attending school a smart move today but what do I know,I'm just a mum...

Bless her, she so clearly wants to push herself to do it.
I'm sorry you had such a bad night zoo.
I hope today goes well.
Is she on any medication? If not that could be a game changer. Although takes a while to work/ get right dose/ medication it has certainly made a big difference to 2 of my DDs.

Didn't go in the end,was so exhausted her body gave it a big fat NOPE.
Runner she's currently taking