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!

How is everyone? I lost the thread.

Zoo sorry to hear you have been unwell. I hope you are feeling better now.

Runner can you ask precisely why DD doesn’t meet the criteria for an ADHD assessment and then complain/push back. It might be DD does but they don’t have all the information to tick the right boxes, especially as multiple professionals think an assessment is warranted.

DS3 is having a really difficult time at the moment and school isn’t going well so he is enjoying having Monday off again.

Hi bouncelovely to hear from you.my D's is also enjoying these extra days off.as the school year for GCSE children is approaching its end he's been told those leaving will likely push back and get away with more..he's frightened frankly.on Friday at forest school a kid put bit polystyrene on the fire and D's OCD was scared as his bag was nearby he wouldn't eat his lunch,or drink hus drink in case any funds "poisoned" it😞

We haven't withdrawn dd2 from a levels yet,she has zoom interview with open access tom.once certain meet criteria i guess we tell school,and child benefit she's leaving/left?she's not been able to revise etc at all

Lil zoo in Spin as found out on Wednesday from another student English poetry PPE(mock?)is tomorrow,confirmed by teacher on Thursday she didn't say the stuff told to revise was things she hasn't done/doesn't know how to do and is not good at unprepared😞I've email HOY but obvs no reply this weekend.school are currently going thru all her school books trying to find where the learning gaps are with intention setting work to plug it all up by September for year 11

I still feel awful,post viral I guess,very tired very easily and my smell and taste are still off<did check numerous times,not covid>I am anaemic,so assume that's not helped

Hope everyone else is ok

Hello everyone, hope you are all enjoying the long BH weekend ( those in UK anyway!)This weekend has been nice and chilled.
DD has also been worse recently, which is quite hard to see and accept, wish i was better at taking a step back!
The only GCSE she is scheduled to sit is maths but seems to have completely derailed her and now shes not going going to any lessons . Her mood is very up and down, CAMHS have prescribed a new medication , just waiting for prescription to go through their system before its ready to pick up which seems to take 2 weeks , then ill have to leave work early and do an hour round trip to collect!- why is nothing traightforward?!
Re ADHD CAMHS told me its becausd her school forms didnt meet the threshold ( hers and mine did) i think its because an inexperienced tutor who only saw her once or twice before completed them , and tbh she probably masked .
So tutor service are redoing forms.
We have our AR meeting coming up so thats also playing on my mind and taking up time to prep and ive been sent pip claim form ( booklet!) for DD as shes now 16 so need to complete that- by hand and post it back!

Sorry things are not going smoothly for you bounce and zoo.
I hope things settle down for your DC.
Roll on summer holidays!
Hope you are fully better soon zoo

Zoo sorry you are still not back to normal. Good luck with DD2’s interview.

Runner I’m glad the tutor service is redoing the forms. I hope the new medication helps. For the PIP form, you can type your answers if you want, just make it clear which question you are answering. The benefits and work website can be helpful, and although it’s not my LA this is the best free guide I have come across.

Sending love to all those having a hard time at the moment, I hope things get easier. It has been nice having shorter weeks back to back. I wish a three day weekend was the norm! My dd is ok, school has been tiring and socially she is still anxious but I feel she is coping better. It's small steps and there are days when things aren't great but I have to remind myself to be patient and not get too stressed myself. I don't ask her too much about her sessions with her therapist but she does seem to be engaged in them now and remembers to attend with less prompting from me. The GP has made several follow up calls to check in with her which I have really appreciated. She has decided that she does not want to have an autism assessment as she doesn't think she has it, which the GP has agreed with. I am not sure but I have decided to respect her choice.

And I second roll on summer holidays.

@vikingwoman I don’t know if you are around, but I am thinking of you today and I hope today is going as well as it can.

Having had a couple of 4 day weeks DS3 tells me he has not missed Sunday evenings with the prospect of school the next day.

bounce D's also has gotten out of routine with the BH and finds Sunday evening difficult.
He has been out in for GCSE maths this year,despite being told unlikely to pass"but can try again next year"...

He's becoming very blunt/rude recently and belittles/makes fun of myself and dd2 a lot.ive tried telling him it's hurtful he says can't see why he's "only joking" I reminded him of the knowing your audience concept and what's actually funny which fell on deaf ears.he is normally a very gentle kind boy and it's quite difficult having a sarcastic mean one in his place..he doesn't do it to lil zoo as she's super sensitive and will get very upset,so I am thinking it's more venting his frustrations than outright unkindness.either way it's hard😞

Is DS receiving any support with social communication and interaction?

After a difficult couple of months for DS3 at school we have been considering a few special schools as it may be time to move him from mainstream.

How are you all?
@okisenough I agree about trying not to get too stessed and step back but its hard!
Bounce- Sorry your DS is going through a tough time atm i hope you find the right school for him.
Zoo- sounds doffucukt when teens are being so snappy and rude , somebif ut is normal teen stuff but SEN defintely makes it harder and they usually take it all out on the person closest to them.

We had DDs AR meeting today, went ok but case worker ( new to us) clearly hadnt read any reports didnt know anything about DDs background which i was a bit miffed about as they insist on reports being in 2 weeks in advance ( seems pointless if they dont read them prior to meeting! ) So it was mainly a form filling and box ticking exercise, not any discussion about wording etc, she wasnt interested in discussing any provision, she said they will read submitted reports in the next 2 weeks and make a decision. She some made notes and said they will get back to us in 2 weeks. It could have all been done on paper tbh.

DD has her first maths GCSE paper tomorrow not sure if she will go, shes been unable to attend maths lessons since easter - very stressed and has done no revision . Nothing i can say or do will change it really so Im trying to be calm and accepting!
How is your DD doing zoo?

Fingers crossed Runner that your DD does feel able to have a go at the maths paper tomorrow. Remaining calm and accepting as a parent when feeling hugely stressed by uncertainty and worry under the surface is so challenging (well I find it is).

I was wondering how DD2's open access interview went too Zoo and I hope it was positive.

Bounce sorry to hear DS3 is having a hard time at school currently, is he ok with possibly changing setting?

I can't believe it's May already! I'm enjoying the warmer weather although I now realise how lacking the contents of my wardrobe is. Need to have a serious sort out as most of my clothes don't fit/aren't comfortable/don't suit my body shape and I've no idea why I've kept them. I find winter clothing easier and just rotate the same comfy warm items!

Runner good luck whatever decision DD makes about tomorrow’s maths exam. Sorry the AR was underwhelming. Although at least the caseworker didn’t mention school/college.

Muddling I am the same with clothes. I also have clothes I have saved in the hope of losing weight, something I am failing at at the moment.

DS3 doesn’t want to move school, but isn’t coping in MS lessons. We have viewed/spoken to a few special schools, only one is potentially suitable. DS won’t/can’t visit so I don’t know if it would even work. AR after half term anyway.

I find week days when I'm working easiest as we have an informal/optional uniform provided for us which includes polo shirts, sweatshirts and fleeces. I wear my own jeans and long-sleeved tops as a base and layer the work wardrobe depending on temperature - so easy, no thinking required! I even have a different colour long sleeve top dedicated to a particular day to minimise my decision-making further! I'm not sure what this says about me but without a set routine for things like this I can get completely lost in indecision and lose a lot of time.

I too have lots of clothes I might fit if I lose weight (also not succeeding at) but the truth is, my body shape has changed in the interim along with my taste in clothes so even they fitted, they probably wouldn't suit me.

Can totally relate bounce and muddling.
Now warmer weather is finally here ive realised i have no shoes only boots or sandals nothing in between. Im still in jeans t shirts and cardigans, also was hoping to lose weight by spring but it hasnt happened. Could do with a wardrobe overhaul as its heaving with clothes that i dont fit or are slightly stained or holey , but frankly its too much effort. Deciding what to wear is no longer the pleasure it once was. And then theres my sewing pile.....

DD managed her exam- hooray! I dont think shes answered enough questions to pass but she did it and said it wasnt as bad as she thought. Shes bouyed up by it and is going to do the other papers and may even revise! ( probably getting a bit carried away there!)

I didnt really mind the AR being underwhelming just cross they hadnt read reports and it was a box ticking exercise . Ive stiill no real dea of what the final plan after AR will actually look like! I thought most things would be agreed/ firmed up during the actual meeting. Probably went in with the wrong expectations.

Good luck with schools Bounce, change is very difficult, DD was very resistant to leaving her old school even when she wasnt actually managing to attend. It took a long time for both us to accept.

Hope everyone enjoys the warmer weather and has a good weekend ( and finds something half decent to wear from back of wardrobe!).

Runner hurrah! I am so pleased DD managed to attend the exam.

Amendments are always only firmed up after the AR meeting. The LA have 4 weeks to decide if they are going to amend and issue a draft if they are. You never really know what, if anything, they are going to do. The LA don’t even always attend ARs.

Fantastic news Runner! Great also that doing the exam gave DD a well-deserved boost.

The LA didn't attend DD's AR in Feb - placement said this is standard for our LA. Amendments (minor) and addition of ASD diagnosis/report were discussed and updated between us, course leaders & SENCO then sent to the LA. LA did respond to say they had accepted the amended EHCP! Suspect that next year we will need to get private reports and request bigger changes - hoping to have a better idea of what DD might do next by then and plan accordingly.

DD2 still up and down but I have to remind myself "ups" were few and far between this time last year and I couldn't then have imagined her being able to attempt things she had done recently. Placement is 3 days in a row whereas every other day would suit her better - she doesn't very often manage all 3 days. BUT she has been on several trips recently including a 3 day residential!! This week she has managed an MH appt at GP surgery, lunch out for DH's birthday followed by placement and a full day trip out in another town plus show! The inevitable crash comes after such achievements of course - 10 days of not being able to leave the house coupled with high anxiety/low mood after the residential and a day in pyjamas due to social exhaustion today. Placement staff are wonderfully caring and their understanding and encouragement really makes a difference for DD2's confidence.

I worry about the future and can't see how she will be able to attend a MS placement in person when she leaves current setting. Have (finally) got around to applying for credits-only ESA with DWP for the purpose of getting a work capability assessment for DD. Got fit note from GP ok and so far DWP personnel have been helpful.

Muddling that’s amazing.

It is difficult to remember during the difficult times progress isn’t linear, there will be ups and downs. For us, progress was when the downs weren’t quite so low and the swings from high to low and back again weren’t quite so frequent. He was more ‘level’. It was exhausting to watch, never mind DS actually going through it. I try not to think of the future.

Well done runner to DD doing maths paper.ds did his today,altho not expected to pass, merely looking for knowledge gaps🙄
Muddling some truly fantastic positives for DD there.irs hard seeing such a heavy price as the aftermath but it's still a huge step for her and I'm delighted for you both!
Bounce change is hard.sen or not

Dd2 had email from school today,having explained Wednesday she won't be fit to do exams,they finally employed exam officer started today.theyvd looked DD case and said had she got 25%coursework could've gone special curcs route,but as only 20 all can offer is quieter space and a taxi get here there and back.im cross as she had made peace knowledge wasn't in fit state to do it then it all been dug up again and she is a people pleaser and now very distressed and mad at herself
Not helped by uni also contact her saying can't defer as be going in via access not a level will need reapply
Cue meltdown at uncertainty and a lot distressed tears.
Didn't help had gone out on walk with dad somewhere new and he's no use when she's upset so masked til home then hysterical once he had left..
Been a rough day frankly

Zoo well done to DS.

I’m sorry DD2 will need to reapply for university. For special consideration, unless the exam board is the CCEA (which is less likely), one component worth at least 15% has to have been completed, not 25%. The rules are here - pg8.

Thanks all for your lovely comments, this thread has been a lifeline of support😊
Thanks for sharing your AR experiences, fingers crossed LA dont try and down grade anything.

Zoo, im sorry friday was so rubbish, but i hope the access route works out well for DD , it must be very hard for her to accept shes not well enough to sit exams atm. But it doesnt mean it will be that way forever.

Muddling sounds like amazing progress but i understand the downs are still very hard.
I also worry about my DDs future wonder if this is as good as it gets, will she ever be able to manage "normal" life. But then I give my head a wobble and think its not necessarily forever. I just never saw this coming and remembering how happy and normal everything was ( or appeared to be!) before she hit puberty now feels like a very distant memory. This has been our life for nearly 4 years now so nearly 25% of DDs life. I realise she was always autistic and tbh an anxious child but she managed with everyday life and was happy most of the time, I just want to her to return to being happy and a lot less anxious. Actually I want that for me too!

Well fine to DS Zoo. Sorry DD2 (and you) had bad time of it last week. Really unfortunate timing for exams officer to take things up when DD2 had accepted that she wasn't well enough for exams. I hope your weekend has been calmer.

Runner you've summed it up completely. When DD2 is having a good day (or few days) I think anything's possible but when she's low and unable to tolerate being around us, leaving her room etc it's hard not to worry about the future. Living at home with us is fine but I would like her to be able to work, and have an independent and fulfilled life as well. It felt like her difficulties came out of nowhere and I think of DD2 "before" and "after". In reality and with hindsight I know this isn't the case and there were signs and difficulties prior.

I had a wardrobe sort out and tidy and feel quite pleased with myself. I hope everyone has a good week.

How is everyone?
Hope you are having a restful half term.
Ive had a couple if days off but now back to work.
Ive come on here to rant- sorry!
Just got the proposed AR amendments through for DDs EHCP .
LA keeping EOTAS but want to delete all reference to number of hours of provision meaning EHCP is completely unquantifiable. Im alternating between rage and tears. I will ask for amendments and the 17 hours tuition wording to be reinstated but no idea if they will agree to it. At our AR meeting they never discussed the possibility of 17 hours wording being removed.
So less than a year after being awarded 17 hours by tribunal i may need to go back to the tribunal to get it reinstated. Its never ending stress.

Bounce, please can i ask a question?
I twigged last night that actually its not at all clear that our LA are actually continuing with EOTAS.
The wording referring to EOTAS have been completely removed in the proposed amendment, its not highlighted as a change or striked through as a deletion- its simply disappeared.
There is still no provision named in section I, that remains blank.
But basically with the removal of the wording specifying EOTAS and the 17 hours provision from section F together with no placement named in section I its unclear exactly what education provision the LA are proposing, anything quantifable has been removed.
After a sleepless night I have emailed them to seek clarity.
There is no evidence to support its removal, quite the contary,its like they havent read the reports submitted.
But my question is- if i need to appeal ( again!)
Does provision in the EHCP she has now continue whilst we appeal the content in her new one?? Ive read conflicting things about this- do you know? Im so sorry to bother you but id appreciate any help or advice.

@Runnerduck34 Just read your posts - can't believe your LA are putting you through this again. No knowledge or advice but hope they respond to your email a.s.a.p.

@Runnerduck34 email the LA’s Director of Children’s Services asking them what new evidence they have the provision ordered by SENDIST is no longer necessary. Inform them you will be seeking legal advice. I would also contact SOSSEN (or if you can afford it another legal aid solicitor (for JR it does need to be a legal aid solicitor) as I know SOSSEN has a waiting list and time is of the essence here) with a view to seeing whether JR is possible (sometimes is in these situations) and a LBA is if is.

Also, complain with a view to going to the LGO and appeal as soon as finalised. If you have to appeal request an expedited hearing as it is a phase transfer appeal and DD will be out of education. You can complain to the LGO about the delay in the phase transfer review, delay in provision, funding and maladministration whilst you have an open appeal to SENDIST as they aren’t dealt with by the Tribunal.

As long as section I is blank then it is EOTAS regardless of EOTAS not being explicitly stated. However, as you say with nothing detailed, specified and quantified in F it is worthless. What about section J, is the PB still there?

As soon as the amended EHCP is finalised that is the version that stands, unfortunately for you.

Thank you bounce and muddling, I so appreciate your advice and solidarity.
I sent several emails last night including councillors and director of SEN and LA have now responded to say the wording that referenced eotas was removed to give us the opportunity to name a school or college at the amendment stage as they cant assume eotas ( even though we'd told them at AR that eotas our preference ) .
Im told specification of 17 hours is still under discussion.
Hopefully it will come out in the wash but honestly i think they were trying it on.
Salt , OT and art therapies are still specified.
Will be writing a formal response this weekend, we were hoping to make it more specific not less!
The thought of going through an appeal yet again is just awful but will be following all your advice bounce - thank you. I dont think anything is specified in J re budget. I have been stuck in traffic for over an hour on my way home from work, just to add to the joy!