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

Happy New Year everyone. Sending best wishes to you all.
DS managed well, except Boxing Day (exhausted and overwhelmed) and NYE. He’s slept most of the time. We make sure he’s in bed at 9 every night and he will happily sleep until midday. Maybe puberty in the mix as someone insightfully posted upthread but mainly I think just because he’s exhausted. Even more so this time of year.
I’ve been busy filling forms in for CAMHS. Diaries, activity sheets, yet another RCADS and also an autism questionnaire. It looks like we are heading towards a diagnosis. I feel like a shit parent. If my ds has ASC then why have I let him get to 14 without me getting a diagnosis for him……school obviously don’t support it. His private clinical psychologist is also reluctant for a diagnosis to be made at the moment. Apparently we need to be asking questions of how it will benefit ds? It’s just all so confusing.

mummyD's was 14 too when he was diagnosed ASD.he clearly was very bright and that stopped red flags in school as academically he was never in any difficulty,socially isn't always picked up
We could beat ourselves over heads indefinitely with hindsight.reality is we know NOW.and we move forwards with that knowledge

Still no feedback from D's school a put part time hours for Starr of term tom.im livid as was actioned in taf for them to help sort with lea.i will not be just put him in taxi fulltime tomorrow he's not going back til it's sorted.hes been in a state since BOXING DAY fret over it

Zoo I wish fireworks were not available for general sale, too.

Muddling that’s brilliant to hear. Education doesn’t necessarily have to be in the traditional sense, and qualifications can always come later if DD2 isn’t ready now.

Mummy You are not a shit parent. I missed DS3’s ASD despite DD2 already being diagnosed, it was DS1’s CAMHS team who spotted it . If DS has ASD of course a diagnosis will benefit him, it is poor of the CP to say otherwise. It’s a tiring time of year for everyone, so not surprising those with additional needs find it even worse and existing exhaustion is exacerbated.

School infirm me D's cannot do half days.ge has to do 3x full ones a week for transport
They've chosen Mon,we'd and Fri.
Given his anxiety has been high since boxing day fearing school return this is not what I had hoped for(I suggested 5 halfdays)
They have no other choices to offer and I asked what happens if it does push him to the endge.we will have to try and manage that if it happens.brilliant...i prefer proactive with him not reactive as it rarely goes well but I'm just his mum what do I know?

Zoo part days are possible, DS shares transport doesn’t he? They just don’t want to pay extra for transport. However, are the LA going to provide alternative education for the rest of the week?

If the placement is at risk of breaking down you can call an early review (although you should have recently had an annual review or have one very soon for phase transfer to post 16 so the EHCP can be amended by 31st March). If DS cannot attend the LA must provide alternative education including anything specified and quantified in section F whilst going through the amendment process.

They're saying he can access the teams GCSE classes of MS in school unit and on days he's home

Can that meet the academic provision in section F, and what about the other provision in section F?

Hi my daughter (now 16) developed agoraphobia last January and has had panic attacks for some time. I just wanted to say hang in there. She started Sertraline last May and just before Xmas she made it into a classroom for the first time in a year. We got her seen by an educational psychologist quickly at school and she stated this was a medical reason. The school then backed off with the 'attendance issue'. She has been having medical needs teaching since November. If you're struggling with school request an educational psychologist but get a medical diagnosis first it will help. We had to pay for a psychiatrist as no help from CAHMS.

camperqueen54 welcome.

If DD doesn’t have an EHCP you should apply. Partly because it can give more provision than otherwise available via medical needs tuition, including therapies and other provision. But also, the LA’s statutory duty to provide alternative education to those unable to attend school only applies to those who are CSA, after this the only way to ensure provision is via an EHCP. Muddling is extremely lucky as it is extremely rare for LAs to provide provision when they don’t have to. IPSEA have a model letter you can use.

Sadly, LA EP assessments are hard to get outside of the EHCNA process due to the limited hours schools get, so you were lucky to get one so quickly.

leap the acasdemic section says should be adjusted to meet need to build his knowledge base and provide challenges
He's being given predominantly English in attempt pass GCSE (trying to condense 3yrs work into one year)and some maths...it's nothing like the volume in. MS he's used to

That is way too vague to be of any use enforcing provision.

Think just go have to supplement with the oak learning stuff on days he's at home..an hour's worth of work is ridiculous

That isn’t acceptable provision Zoo. Have you complained to the LA reminding them they have a duty to provide DS with a full time education?

No I didn't think I could being as he is technically being given something?

You can complain as it’s not anywhere near a full time education and doesn’t include any other provision in the EHCP?

Hi everyone
Good to some snippets of positive.

Waves at Viking.

Zoo - you should call a ehcp review as it sounds like ds will be in complete refusal soon

We spoke to solicitor tonight. She says the final draft of ehcp is not worth the paper is written on. La have slipped in an email today that the panel approved 15 hours in mainstream which we know is not adequate. Nowhere I any paperwork does it say this. So we are waiting for the final document tomorrow and we will be submitting another appeal. No mediation this time as it is now exactly 1 year since I submitted the EHCNA request. Lawyer thinks we might have some kind of outcome by around May but the goal is actually now to start thinking of post16.

I may consider litigation when this is all over as dd school refusal is all down to trauma she received from specific incidents at school which were then mishandled.

In positive news, she started to talk to me about her ptsd the other day. More than 2 years that has taken.

Anne I'm sorry the ehcp us proving so hard.wonderful she's starting to open up

DS firstset work appeared.bloody joke -clearly a rehash what's available to all GCSE student.but he's lacking 2 years of this and the terms and technical language went right over his head.fyminf as he's now convinced can't do it,no chance achieving GCSE
Dd2 wasbacj today.woyls t eat or drink near faunted a lot people not wearing masks/shutting windows.i had walk over and collect her after-school aswas so weak and wobbly I couldn't let her X fields by herself.oain and shaking muscles all evening.gawd knows how she will be when iwake her

Thanks so very much leap and zoo I’m so grateful for you guys.

Zoo, I’m so sorry to hear about both of your DC and the situation at school. No wonder we become exhausted when everything is such a fight. Hope your dd is ok when she wakes. Hopefully will be relaxed enough to eat something.

She didn't all day Friday again..I managed get some her favourite falafel into her at 4pm.
She cannot continue like this: her poor body is exhausted,constantly hurting and stiff from tension and shaking and she's becoming very low.i don't even know where to start to help her

Hello all just saying Happy New Year and let's hope 2022 provides some better times for all our kids.

Holidays are a mixed blessing aren't they. Remove one set of pressures and expectations and replace them with another. We just totally removed the main stressor (school) from the agenda and concentrated on trying to have some nice times together and to an extent it worked. DD did burnout and totally shutdown a couple of days, and then the anxiety started up a few days before school return.

Zoo -so sorry school is proving difficult, I suspect 3 days versus 5 half days is all to do with convenience of school transport and costs, definitely challenge it, I really feel for you and DS, also hope DD is ok, Good luck tomorrow.

Welcome Camper, DD also struggles to leave the house we also went private out of desperation as CAMHS are useless. Would also recommend applying for EHCP.

Mummy, we also missed DDs ASC she was recently diagnosed at 14.

Madness, sounds familiar DD socialised a lot more but it took its toll and she burnt out, we agreed to allow her time to herself in her room for one day to recover resulting in her sleeping all day (and most of the night) so her sleep pattern was completely ruined by just that one day which we are struggling to get it back.

Good luck with EHCP Anne.

Im still battling EHCP, as tribunal date looms I am now wishing we had a solicitor, feeling daunted and out of my depth.
However Tribunal are clearly getting frustrated with LA-they have failed to comply with 2 tribunal orders, so they now have until 12 noon tomorrow to, among other things, name a specialist school otherwise they will be barred- not sure what LA being barred would mean if it happens -would it mean we've "won" and will get EOTAS for DD or would we still have to go to tribunal?? Anyone know??
So waiting to see what the next couple of days bring, spent yet another evening on emails and going through working document etc when all I want to do is sit on the sofa and watch call the midwife!
I hope 2022 is a better year for us all and our DCs.

runnerdeffo all about cost.ds shares a taxi.will be thinking of you today no idea what barred would mean either
Dd2 not at all good.no idea what to do.sges just in school freaking out/trying control anxiety not learning.then exhausted at home

Hi all,

Got my dates wrong its by midday tomorrow LA should name a school or be barred.

Having another stressful day, failed to get DD to her covid vaccine and have just heard that our EOTAS provider has pulled out of being our witness at tribunal as they are wary of being in conflict with LA , probably as LA funds most of their places!
The LA informed them this morning that the maximum funding they will give their service is being capped at 10 hours per pupil per week. Their provision outline for DD is for 17 hours, I asked them to confirm that if tribunal orders to fund 17 hours a week that they could do so. They said in theory yes but kept repeating they are wary of being in conflict with LA.
Now Im worried they may backtrack on provision they can provide, just as I thought the end maybe in sight!! TBH DD couldnt manage more than 10 hours atm, even that might be stretching it but I want to future proof her EHCP for the next year so would like the option of increasing her hours, also worried tribunal may think EOTAS is not good enough if it only offers 10 hours a week.
See what tomorrow brings.

I hope it went more smoothly today for you zoo.
If DDs anxiety is so high she will not be able to learn, it sounds similar to how my DD was when she attended school, we stopped trying to get her in mid October as it was causing so much stress , she started to school refuse (I hate that term!) in October 2019 so did keep trying for 2 years but it was just getting worse and worse.

Ds was meant to finally be back in school today. Last night he was so worried it was 6.30am before he fell asleep, so try again tomorrow!

Sounds all too familiar Sirzy- Good Luck for tomorrow, is it a full day? Is there extra support in place?