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!

Good luck to everyone DC who are expecting GCSE results today.

Zoo- sounds like DD is making huge progress going in day trips, amazing! Clearly takes an awful lot out of her but bloomin brilliant she's so determined to go.
I hope it gets easier for her. My DD always is anxious before a day out and crashes for a few days after too, although the pre and post anxiety/ crash time is now shortening.

Good luck to all those getting GCSE results today.

Zoo DD2 is doing well, thinking about university is a good sign. Has anyone discussed pacing and spoon theory with her? I hope going to town goes well, DS1&DS3 hate shopping, unless of course it’s the Lego shop! As hard as it is taxi arrangements are always last minute. Difficult, but means once you have them they are less likely to change a thousand times before the first day.

At this point I wouldn’t do anything about the PIP. To be considered able to do a task one has to be able to do it safely, to an acceptable standard, repeatedly and within a reasonable time period. With a few exceptions based on safety, in order to satisfy the criteria it has to apply for more than 50% of the time. Without wishing to sound pessimistic, I suspect, to one extent or another, things will revert to what they have been like when sixth form restarts. If in a few weeks time the improvement remains and what you wrote is no longer accurate then you can write to the DWP.

@Zoo your news sounds really hopeful & positive. Your DD sounds so motivated to get herself better & catch up with her friendship group. Well done her.
Well DS appears to have got the grades he requires to stay on at his school. He told me at 11.30 & they came out at 8am 🤦🏼‍♀️. So a mixture of 9's & 8's. Amazing considering what he's gone through this year. Thank you all for thinking about him 💙
Very relieved ....

@cantonet those results are amazing!
Though he clearly kept you in suspense!
What a relief he can stay on at his school.

Well done to those with exam results. Any results are ab achievement.

Zoo - these day trips are amazing. Much different to school though. A huge amount of planning, controle and less demands than school environment. Stick with rhe pip application.

Our eotas plan is finally coming together so hopefully will be approved in the next week and start week after. 3 half days a week at 3 different settings. Tutoring pe called in for later on. Some art therapy pla need in too. Camhs relationship has completely broken down. Still struggling to find private treating therapists so planning to look at that next week.

@Cantonet wow.great results!
We survived town,D's has new shoes,no full on meltdowns,but lil zoo did whine all the way back as expected to carry a bag of things(everyone else had at least 2!)
Greg's sausage rolls on the way home and a donut bought for after tea helped D's plod forward😁he knew how many shops and was quite enjoying a book about myths in the library which was last stop prior to Gregg's!
His results still weren't in at 330,I fired snotty email to staff member,who claimed many kids decided wanted email and she had been snowed under(surely first come first served in that case?I suspect she forgot tbh)
Well he got a pass in function skills level 1 and for English<drum roll>literature 5(old money a c pass)which considering only had 4months to learn everything and you tube to teach it.is incredible.language he got 8(a) again,three years out if school and very little help once in it.thsnk goodness for oak academy during the school less years and his determination and curiousity which propels his inquisitive mind!I'm so very proud of him,and he can truly take all the credit as school served him very little.onwards and upwards from September and hopefully more exams grades to come from new placement!

Thanks for thoughts on DD.shes been in awful tizz all day.huge panic surges and massive amounts reassurance required...

Cantonet hurrah. A relief for you both.

Zoo Congratulations on DS’s results.

Tiktok I am glad EOTAS is nearly sorted.

@folly115 your DD sounds very much like my DD happiest in the house except mine hardly goes out at all.

congratulations to everyone who got their GCSE results I know how hard it is with anxiety too so super well done you all must be so proud. We’re in Scotland so GCSEs and ECHPs etc confuses me

As for us not much change DD1 had her last CAHMs appt as she’s now 18, she has 10 weeks with a peer supporter with SAMH (Scottish Action on Mental Health a charity) so weekly chats with someone who has also had anxiety, then they said if she is still feeling anxious to see the GP and be referred to adult MH services 😡think we had better start saving up for a private therapist just now. She’s needs a regular professionally trained counsellor/therapist.

My MH is not the best for a variety of reasons and my days at work have been cut from 5 to 3 (a long story) not the best time for a drop in salary.

@sweetkitty I'm so sorry to hear that services for DD are at best limited and that you are struggling too.

DD has been very hard work since she got back from Carlisle,not help by fact she also acquired a bug so has had a shocking cold/painful cough and chest

Just checking in
Pleased your EOTAS plan is coming together tiktokcat.

We are still waiting for LA to agree a personal budget and direct payments for DDs EOTAS package. They haven't acknowledged our request yet and I'm concerned they are going to question it and/ or it's going to takes ages- just like everything else !
Sweetkitty,- sorry you ate feeli g low and struggling to find professionals.

I am also having some issues sourcing professionals. Im still trying to find an OT and struggling to even get a response- possibly they work school term time only so will keep trying.

Also trying to decide best way forward for DDs psychiatrist. After 2 years she was finally been given appointment with new camhs psychiatrist. So do I now let private psychiatrist go???
she can't really have 2 psychiatrists but I know camhs have problem with recruitment and retention. The camhs psychiatrist is the only one in our area, took a year to recruit and the previous one lasted only 2 months . Private psychiatrist is no longer accepting patients so tbh I'm scared of DD being left high and dry with no support.
She has a scheduled appointment with private psychiatrist Monday so I think we will go and be open and see what he says- ideally I'd like him to keep her on his books with perhaps 1 appointment a year whilst we see if camhs actually works out. If she doesn't see camhs psychiatrist camhs told me they will discharge her. Camhs haven't offered any therapy at all. It's a minefield! Any advice?

I have just been told I am at risk of redundancy and our team numbers are being reduced ( this is after recruiting a FT permanent member of staff in April!) So reeling from that as now pitted against colleagues fighting for our jobs and we won't know until December if we are successful! Feels like I'm in a never ending cycle of stress and I feel particularly vulnerable as feel I haven't been as focused at work and struggled to concentrate with everything going on with DD plus needed a lot of flexibility.

Zoo I hope DD feels more settled and gets better soon. Going to Carlisle was huge achievement, such a shame that trains didn't go smoothly on way back, poor thing, she probably had no resources left to deal with that. But bless her she survived and I hope she's proud of herself for going.

@Runnerduck34 yikes,just what you don't need - work worry on top.ive no advice except here camhs us worse than useless.
All mine revving up anxiety about going back to school

Runner sorry to hear you job is at risk.

Have the LA issued the amended EHCP yet? They should have done. Even if they are dragging their heels with the PB they must still ensure the provision in section F is delivered.

I wouldn’t say anything to the private psychiatrist until you have seen the CAMHS psychiatrist - you might not like them, they might not keep DD on their books beyond one appointment, they might not even still be working for CAMHS by the time you get to the appointment... I would wait to see what happens before saying anything.

Are therapies not included in DD’s EHCP, so if CAMHS can’t or won’t provide it the LA must commission independent provision?

Thanks Bounce and Zoo.
Yes we now have amended EHCP

There are some therapies included such as art therapy so that's probably a better route than via camhs.

Was thinking can I get LA to fund or submit invoices if they drag their heels over PB?
Trouble is they will ignore any emails requesting this . It's like talking to a black hole. Not sure anyone is listening!

Yes, even if the LA drag their heels with the PB they must ensure the provision in the EHCP is delivered. If it isn’t email the Director of Children’s Services threatening Judicial Review. More often than not the threat works, but if it doesn’t contact SOSSEN for help with a pre-action letter.

Alongside the above, if you fund anything yourselves save invoices/receipts and any communication. Once provision is in place complain to the LA (it is vital you don’t complain prior to the provision being in place, because going via the complaints process prevents you going down the JR route), exhaust their complaints process, then complain to the LGO who can order the LA to issue a payment.

Thanks bounce, that's so helpful.
I did a stage 2 complaint after tribunal so a month or two ago- no response to date- predictably. Does that scupper JR or if necessary and needed can I do JR once we have a complaint response?
Was thinking of LGO.
Have I screwed up my timings? Should I be chasing for complaint response now ? It was a complaint about EHCP process, lack of response to tribunal orders etc

The existing complaint won’t prevent you from pursuing JR proceedings if the LA fail to deliver the provision in F. You just shouldn’t begin the complaints process about that particular grievance as then you can’t go down the JR route as you have acknowledged there is an alternative remedy.

Chasing a reply to the complaint now won’t necessarily achieve anything, the LGO say to allow 12 weeks for a response.

Thanks Bounce:)

How's everyone doing with school return imminent?
DS isn't good.he can't concentrate,is short tempered and miserable.bless him,it's go take some getting used to- a full/normal timetable,much longer travel time to place he doesn't know(45 mins to old school was bear a country park we've visited on quite a few occasions)as wears new buildings and staff.we have a visit booked for Thursday to meet teacher etc.hopefylly start week after IF can get transport approval.try get hold someone to check what's happening a bit like try stop an ice cube melting in your hands...
Dd2 also in a tizz as new year and alone now as her cohort are gone and she has no friends in this year group(she did try very hard but they only friend made moved away)
Lil zoo kicking off about p.e be included in her plan now.full time table,all GCSE subjects plus pe.hasnt done it since start year 8 as we went under ED team,then she wouldn't go in o.e days so was exempt but given how much she tries adjust all rules to her liking it's been decided all in,which I'm in favour of as she just lays in bed inactive at home and she used to dance and be suoerfit.getting her to walk with rest of us is hardworking and she makes trip miserable for all if us

That sounds hard zoo and very stressful juggling everything and reassuring everyone.
I hope DS visit on Thursday goes well and transport is agreed without any drama. Really hope DD2 makes friends and lilzoo gets to do dance in PE and it rekindles her love for it.
Lots of luck to everyone whose DC are returning to school in the next few days.
We appear to have funding agreed for EOTAS☺️ LA emailed to say it had been processed and paperwork passed to the charity that manages personal budgets. But I've no idea of the details and if they've just agreed to everything we requested. Fingers crossed they have! So I'm feeling more optimistic although exact details are lacking! Im hoping DD will engage as she's been out of education for 12 months and the previous 2 years were very low attendance and covid so she hasn't done a full school year for 4 years, we are going back to build up gradually .
Still worrying about my job and risk of redundancy feels like a constant black cloud over my head I can't shake off and a bit cross with DH as he doesn't acknowledge the impact that DDs MH has had on my job ( as well as many other things such as my health) because Ive carried pretty much all of it .

It is very hard @Runnerduck34 ..dd2 has been at her dad's a couple days(very long complicated story,and he lives in shared house with tiny bedroom)she messages one of us constantly and I've watched lil zoo pop her head out if her shell a bit more- engaging in TV, chat etc it's been lovely however DD back tonight plus school she's back in shell D's circling the sun with stress of DD imminent return.i have had a bit more energy but I can feel it ebbing away☹️I love her dearly but her constant talk if how anxious she is and reassurance needing has clearly taken a toll on us all.hiwwver,when I've try tone her down in the past she then gets upset and won't take anyone,shutdown and gets very depressed so I don't know what to do..

Zoo I hope DS’s visit goes well and DDs return to school goes as well as it can.

Runner I am pleased funding is finally sorted. The EHCP should be updated with the PB in J. Is the charity going to manage the payments for you? Just so you are aware as I know your LA like to use this charity, you don’t have to. Is everything you requested not in F, so they have to provide it via PB or otherwise?

DS3 isn’t looking forward to returning to school. He has asked several times if he has to go back. DS2 on the other hand is quite looking forward to it. Some of DS1’s therapeutic provision continues in the holidays, so it isn’t such a big shock to the system for him.

Great news runner.

Hope everyone with kids going back to school is coping.

Dd here went on a visit to one of her eotas providers the other day and seemed happy. Back next week. :)

She got very upset last night because reality has hit that she is unlikely to be sitting gcses and she doesn't know what the future holds. It's heartbreaking.

@TikTokCat D's ended up doing just English GCSE and will try more for 6th form.a slower path isn't a bad one,but that still doesn't make it easier watching cohort moving on.dd2 is struggling today,all her year group are organising clubbing nights before uni,she's back at school today in year 13 after retaking 12.
Lil zoo was surprisingly good this morning.head of year providing early timetable and all "good lessons" today helped,as did be able go to the loo before she left!has taken food,remains to be seen if she eats it though..still first few weeks,rather than days,will be the defining line of what this year will bring.she has camhs Friday,but suspect will still say nothing

Hi everyone,
The return to a new school year is so stressful, isn’t it? Fingers crossed for you all that a comfortable balance is soon found.
Well ds14 is starting high school tomorrow and the sh*t has hit the fan. He had a great summer with friends, liked the new school visit and the school orientation last week. However it dawned on me how little he understood how different it would be to his middle school autism class. It has been explained but somehow not sunk in. He also has strongly suspected ADD with extreme difficulty paying attention/listening and anger issues/self regulation. So he’s angry - left house and returned twice, throwing stuff around (no judgment please), causing havoc. ‘D’H won’t have patience for this and returning from work any moment. Problem is, when stressed, DS behaviour is the same in a school setting. There were always concerns on how he’d function in high school but had settled towards the end of last school year because he was in the same class as his best friend. DS says friend keeps him calm and if they don’t have all their classes together he won’t cope and won’t go. Sigh.
Hopefully the situation will eventually settle down.
As always, thanks for listening 🌸🌸