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

Zoo, so sorry you are finding it all so difficult, its no wonder you have so much to deal with. I echo that you really need to priorotise yourself right now, with no guilt!, you are holding everything up so you need to do whatever you can for yourself.
Pleased DDs parents evening well, sounds encouraging and hope HOY call went well.
I hope on some level she can take in the the positive comments from parents evening and she's on a more even keel soon.
Relieved lilzoo had homeschooling until bowels settle that sounds a great plan, and must be a relief for her.
Hope DS review goes OK, fingers crossed for next stage, hopefully it will be somewhere calmer than current school. Really rubbish they forgot the review,especially when you have for much to contend with.

Catonet I hope you sail through results day this year, fingers crossed!

Tiktokcat I'm sorry you are having to rethink, it's really hard when you have struggled so hard to get to this stage inky for it not to work out ad you hoped. I'm glad you've got a lawyer to take some pressure off you .
Have you spoken to the school, maybe they could make some suggestions for adjustments?
DDs MH comes first, we are also hoping our DD will be able to sit GCSEs later than her chronological age

Viking I'm not sure what today is bringing but thinking of you and hoping all goes well.

Tomorrow is the tribunal deadline for LA to name a school if they want to continue to oppose EOTAS and DDs first CAMHS psychiatrist appointment. she wants to continue to see private psychiatrist but if we don't take this appointment camhs will discharge us ( not sure I'll notice the difference!!) so I'm hoping he is good and will also be able to offer some form of therapy.

Very stressful day, predictably our LA have failed to comply with latest tribunal order. So after being anxious for news we are still in limbo.
The LA tribunal lead which was dealing with my daughters case has left, new person just appointed did phone me which I appreciated ( never happened before) but she has clearly been thrown in the deep end , was very candid says our LA SEN is worse she's seen , no team stability and they have no instructions from SEN team for my daughter , she couldn't find all of our documents including what we are appealing for. It doesn’t even sound like LA are deliberately defending their position, that would involve proactive decision making, it just seems that its in a blackhole and no one is even looking at it.

Been told by a parent group that they think if we threaten JR it will enforce EHCP as it stands and not unagreed working document, any advise twirl?

On another note also today had first appointment with CAMHS psychiatrist.
DD manged to attend ( touch and go) but wouldn't talk. He will take over prescribing from private psychiatrist.
He was rushed, waa late as he went to wrong office, hadn't had time to read any of DDs reports or background, he did seem to understand but clearly very stressed and rushed, wasn't clear if we will get a follow up appointment and I forgot to ask.
He asked if we were happy with medication, it has made a big difference but DD still too anxious to talk so how would we know if that's as good as it gets or if an increased dose / new meds would be better?! I asked about therapy and he was non committal but said they don't do art therapy.

Having to combine the above with a working day ( concentration shot) and frayed tempers at home. DH forgot about LA deadline and camhs appt whereas it's constantly on my mind and I'm left doing the emails,phone calls, appointments etc I'm just feeling frazzled and like I'm carrying everything.

Runner I hope you are resting now. DD managing to attend the appointment is a positive step even if she couldn’t talk, especially when the psychiatrist was running late.

You can only JR finalised EHCPs, but you can also JR for failure to provide a suitable full time education as per s.19, The Education Act 1996 which is completely separate to the EHCP process. If section F is vague and woolly I would focus on the latter.

I haven’t met a CAMHS yet that don’t offer creative therapies such as art therapy. I feel you have been fobbed off with this. They may need reminding antidepressants should never be used alone, therapy should always be alongside. Although it’s irrelevant if you focus on getting in section F of the EHCP because then if the NHS can’t or won’t provide it the LA have to fund independent provision.

I could have written your post runnerduck

I have decided to keep dd off school for the next week but I don't think she will be going back tbh. Speaking to lawyer and Psychologist tomorrow night to find out what this does to our ehcp in process. We will be looking at some kind of alternative provision but not sure where to even start with that tbh

Tiktok you can request a change to your appeal. Things to think about: do you want a formal organised AP or not, do you want formal tuition or not, what therapies does DD need, what about other provision, does it need to be at home or somewhere else or a mix, do your reports support AP.

Thanks twirl. I haven't seen the reports yet, waiting on the final draft so I think they can be altered.

She is going to need talking therapy, emdr, some kind of eating disorder intervention, some occupational health intervention, possibly more. I'm not sure yet.

Thanks so much twirl ,that's so helpful, I think failure to provide full time (any) education would be the route to go as finalised ehcp doesn't have all her needs and is part of what we are appealing.

CAMHS psychiatrist said he would ask but didn't think they did any creative therapies. I did say that medication is meant to be supported by therapy but somehow it was brushed off. Probably I wasn't pushy enough. Feel completely ineffective.

Thanks tiktokcat, it's such a stressful process, LA and even the tribunal service make it so much harder than it should be.
EOTAS is really hard, we are going for our LAS approved provider thinking it would be easier, it's not. I spoke to them again to today to see if they had heard from LA ,they haven't, I was told again that they have " to tow the party line" and can't offer more than 10 hours a week as that's all LA will agree to fund. If I could I would try and do everything bespoke but dont have energy and to try and find numerous subject tutors who can help DD who has growing list of SEN need seems insurmountable to me atm.

Runnerduck34 since you are going to tribunal what your LA will do/normally do is irrelevant. If you don’t want to stick to the provider they try to get everyone to use you could always go for a mix of notional budget, third party and DPs. Or don’t use numerous subject teachers - many with EOTAS go for tutors who can teach multiple subjects so their DC have fewer professionals involved - similar to medical needs tuition. DS1 started with 1 tutor, then 2 and now has 3, one does maths/physics/computing, one bio/chem/geog and one English/hist/RE.

Tiktok you will need everything to be in the reports.

Sorry for not keeping up with you all well.
The new format is very hard to navigate on my phone!
DS had review yesterday.i had to stifle a laugh when the head unit said the LA had approached them regarding 6yh form placement.dhe said she told them her staff confidently deliver GCSE work from MS but a level would be too complex and unit was always intended only be year7-12.ds interrupted her pointing out nor that competently with GCSE work as he been there since sept but only last 4 months has there been proper lesson content!
She tried smooth over it with but you are already set to pass GCSE .I felt obliged to add they cannot take credit for that really given the level of input offered it's his natural ability in the subject that's going to see him gain qualifications not that teaching standard<cue silence>
On plus she did report that there's no possibility of placement and no way does she think MS is appropriate,so that's something.shecadmitted they found nothing suitable when trying to help locate a good placement,so that adds hope to case of my choice,should we ever get a definative yes from them he could attend.
The student service support rang me Monday after noon saying we should have or be getting call to do a visit,so that's a glimmer of hope.no call yet,but I plan ring her back today as she gave me her work mobile and email as a point of contact.

Oh and on top of all the everyday crazy I have COVID.felt bit meh sat,by Sunday evening wasntwell .kids had couple lft left,Monday was ok but yesterday it went dark purple second the liquid began rising up the test.no surprises how I'll I've felt

Hi Everyone, sorry I haven't posted recently but I have been reading and keeping up with everyone.

Zoo - I hope you aren't feeling too unwell. You've got such a lot on caring for 3 children with additional needs. You are doing a fantastic job. I hope your DC's Dad can help so you can have some much needed time for yourself.

Runner - sorry you're still waiting for your LA to do something (they sound awful) and no wonder you are so stressed. I sympathise with your feelings of being brushed off/not pushy enough - it's really difficult sometimes when you know what should happen/be available but professionals tell you it isn't possible. I find it really difficult to disagree and push as most people come across as pleasant and plausible! I kick myself afterwards and think of everything I should have said. (Not suggesting you are like me). Don't give up.

TikTok and Cantonet - hope your weeks are going ok.
*
Twirl* - like the new name!

Hi muddling

Sorry you are poorly zoo

Thank you twirl. The reports are being drafted now. Call with lawyer tonight was great. LA are considering a hospital school in short term whilst medium and long team needs are looked at. This could be a Semh setting or EOTAS but there will be a large therapeutic element needed as part of the ehcp. Whether LA agree to it all or not we will see but they seem accepting of her current state

Zoo I hope you aren’t feeling too ill and recover quickly.

Muddling I hope everything is going OK for you and DD.

Tiktok With a hospital school I would suggest it needs to a CAMHS unit school otherwise I don’t think DD will receive the therapeutic support she needs, unless part of a wider package, nor the staff with the appropriate training and experience. If you go for a SEMH setting choose carefully, many won’t be suitable, SEMH covers a wide range of needs including VCB. Don’t rule out some ASD SS either, DD’s MH needs are likely to stem, at least in part, from unmet needs relating to her autism, and some ASD schools can provide a significant amount of therapeutic input. Is DD’s primary need in the EHCP ASD or SEMH?

DS1 has had a terrible day today. Disappointing in many ways but I can also reflect on the fact a terrible day now was once every day. There was a point half the week was worse than what a bad day is now. Doesn’t stop a bad day today being draining though, especially when it coincided with a rubbish appointment for DS’s physical medical needs.

Can i join? 13 year old dd was having panic attacks every day, was getting better after starting CBT . I was so proud that she's doing g d of e this weekend. She was excited about her expedition yesterday. Then wakes up today full of anxiety and refused to go to school.
She wants to do the expedition tomorrow which is good.

Plus I am really struggling at work.

Welcome @malificent7
I'm sorry DD didn't make Dof E today, panic attacks are draining,I hope it goes better tomorrow.
It is very very hard juggling work whilst caring for DC with MH needs . Be kind to yourself.

Get well soon zoo home you don't feel too bad. School meeti g sounds very frustrating but hope it helps you get placement you want and student support call I hope the call goes well.

Hello muddling, lovely to hear from you

Pleased call with lawyer wrnt well tiktokcat, hopefully you will see some movement soon from LA and be offered decent provision .

Twirl, so sorry you had a bad day , good to reflect that the occasional bad day is still huge progress from where you were but as you say still draining and doesn't mean it's easy.

I've just had an email from DDs school saying health needs school are going to arrange home visit, was told in January this wasn't possible and she had to go to their centre , we had 2 appointments that she couldn't attend due to anxiety.
I am wondering if this movement is due to my complaint but after reading tiktokcat post now wondering if LA will offer health needs school rather than our preferred EOTAS.

Runnerduck - we do sound like we are in similar place.

Twirl - really important to appreciate successes over time even on bad days. Dd came down out of her room to talk to us tonight. Lovely.

All new folk welcome :) this group has helped me through a lot

Twirl - I hope you and DS1 have had a chance to recover from bad day on Wednesday - good that they are fewer now.

Malificent - hello, I hope DD managed to go in the expedition. Anxiety can be all consuming and very draining for DC and you. I'm sorry you are struggling at work also - are your colleagues aware of your situation? I have found mine to be very supportive which helps when I need to take time out at short notice etc.

DD2 has managed to do more generally over the last few months and has been enjoying things she had stopped doing like drawing. I think it's a combination of changing to Sertraline and the gradual increase in dose along with having support from different people on a regular basis. We took DD2 back to university after Easter and had lunch at a cat cafe (quite an experience!) It was the first time DD2 had eaten out in over 2 years. However she is now in a high state of anxiety as GCSE exams start next week and we have had to reduce her interactions outside the home to a minimum temporarily as she is struggling to leave the house/exhausted. The exams are taking place at home which I am extremely grateful for.

@malificent7 sorry - I see the expedition is today, I hope DD is able to go

Welcome @Maleficent. Hope your DD managed to make the D of E trip today.

@Twirl I'm glad you're only having the occasional bad day with your ds these days.

@Zoo I hope you're not feeling too bad with your Covid.

@Runnerduck thank you for your good wishes over the school offer saga.
He's been offered a slightly lower target to achieve in his Gcse's - reduced by two points. But he still has to achieve 9's in his A level subjects.

Ds omitted to tell me yesterday that he has his first GCSE in the afternoon.
I know he hasn't been sleeping well so I've had to give him the stronger meds. the last couple of days. I only know he had an exam because he forgot his exam card. They must be colour coded as his colour gives him extra time & breaks if needed. So there was a 40 min. round trip to deliver this bloody card.
He tells me he's in the big exam hall so I'm imagining this bizarre flashing of cards when required 😯

Welcome malificent7. I hope DD managed the expedition today.

Runner the LA may try to name the medical needs tuition service (in your LA it is a registered provision so could be named) but you would have a good argument for EOTAS because they won’t be able to meet all DD’s needs and you would be able to argue shouldn’t be a long term provision. EOTAS via the EHCP will most likely be more than what the LA offer under s.19 the Education Act 1996.

Muddling lovely to hear how well DD is doing. I hope GCSEs don’t set her back too much.

Cantonet I hope DS’s first exam went well. Is he not in a smaller room?

Thanks twirl, dont want to hijack the thread but please can I pick your brains?
Sorry if questions are daft but Im fumbling in the dark.
Is EOTAS different to the health needs tuition? i.e If LA offer health needs tuition will tribunal consider it EOTAS and therefore we have got what we are appealing for?
Or are you saying that as the health needs education service is a registered provider it can be named as a school?
Can you appeal for a specific EOTAS provider? Although for us this will be very difficult because as you have identified the EOTAS provider we like is commissioned by our LA and is in their pocket, I was told by them again this week that they have to tow the LAs line re what they can offer and wont do anything to upset LA. So they wont support us in a tribunal.
Ive had a busy day at work and taking DD to an appointment and have had 4 missed calls and a text message from the health needs education service, they left a message saying they want to come round next Wednesday which genuinely isnt convenient as Im going to the office for work for the first time in over 2 years , however I can sense something must be happening because after being ignored there is sudden urgency and Im not sure if its good news or Im about to fall into a trap! Of course I might be overthinking (as usual) but I cant really believe the sudden urgency is coincidence and have no faith or trust in our LA.

@Runnerduck that sounds highly stressful & yes suspicious that they've tried so urgently to get in contact with you. These sorts of things always seem to blow up at the most inconvenient time.
Can you change your in-office day?
Or trust your DH to do it?
I wouldn't trust mine as he's useless at these sorts of things.

@Twirl Ds says he doesn't need rest breaks & hasn't used any up to now.
He'd rather get the exam over with as quickly as possible.
So I guess it's there as an option.
Ds1 has rest breaks, as he's got severe ADHD & Dyslexia & gets absolutely exhausted in exams. But dd2 & ds2 say they don't need them

Runner I would be suspicious too, perhaps I am too cynical. The LA are worried and panicking. Whatever you do do not withdraw the appeal if you are not satisfied and in any case before you have a consent order.

EOTAS is any provision that is not provided in school/college. Medical needs tuition under s.19 of the Education Act 1996 can be a form of EOTAS, but EOTAS via an EHCP has a much wider scope and flexibility and would always be preferable. Tribunal won’t consider provision under s.19 of the Education Act 1996 adequate, not least because medical needs tuition provision is usually basic and rarely includes OT, SALT, MH etc. provision.

Some LAs, including yours, have medical needs tuition delivered via a registered provision, so could in theory be named in an EHCP. Although that wouldn’t be preferable as it wouldn’t meet all DD’s needs. However, I have just had a look at your LA’s medical needs tuition and they say they can’t name the provision in EHCPs (which isn’t actually true but works in your favour) and it isn’t long term provision. If I was you I would take screenshots and save the policy in case you need it at a later date as evidence, then if it conveniently disappears from the website you still have a copy. It’s also worth thinking about what DD’s primary need is - is it ASD or SEMH? because the policy states the provision isn’t normally appropriate where a neurodevelopmental disorder prevents attendance.

SENDIST won’t put a specific provider in F. For very good reasons. For example, if you have a specific tutor or OT written in F what if there’s a point where, for whatever reason, they couldn’t deliver the provision. You would have a period without provision and would need an emergency review to amend the EHCP - which the LA could refuse to hold and force you to wait for the AR or request reassessment of needs as there’s no right of appeal for emergency reviews.

As you are finding the preferred provider isn’t really independent. Despite what the LA would like, you can ask for direct payments, and a PB set out in J.

Sorry that was longer than I intended.

Cantonet even if they don’t want to use rest breaks would a smaller room help?

Runner Tiktok Next week SOSSEN have a webinar on Tribunal video hearings if it would help either of you.

Thank you catonet I'm am suspicious!
Twirl thank so much much for taking the time to reply so fully, I so so appreciate your help it's invaluable.
I have signed up to sossen webiner and been looking up and downloading LAS policies.
DDs EHCP doesn't state a primary need, I think when I asked caseworker about it at the time she said they don't put it on EHCP but that DDs main need would be autism however dont thinking followed up that with an email, will check.
When do you get a consent order? Is that if you win at tribunal ?
Should an EHCP, specifically say somewhere in it education otherwise than as school or college? Not sure ours actually uses that term, but has needs and provision that leads to it iyswim.
Minefield!

Thanks twirl.
I'll take a look.
A week off school and dd has put back on 1kg. Amazing really...