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

Deputy head is the attendance officer, not a separate person. Sorry

Fluffy that would be a lot for anyone to cope with. I hope some time away from work gives you time to regroup.

Madness You can ask to record the meeting if you want (you wouldn’t be able to use a covert recording as evidence later down the line), but good minutes that you circulate afterwards are just as good if not better evidence. Who is going to chair the attendance panel? It can not be anyone from the LA - that’s covered in Regulation 48(3)(a) of the Education and Skills Act 2008.

Zoo you would ask the GP, but I would wait until DD2’s 18 for adult services as she’s not going to be assessed before then anyway. Your posts here definitely demonstrate DD3 should be entitled to DLA, I bet you don’t realise how much you automatically do to support her. Was today better for DS? Remember how positive you felt after visiting and taking the photographs, starting a new school is always stressful, even more so with ASD and to top it off DS has been out of school so long.

Oh yes, Zoo, I wasn’t complaining about the first aider but it highlights DS3’s poor communication skills.

Second night in a row that pheregan hasn't worked. Don't know what to do now

It’s not a magic cure always, it will take weeks for DS’s sleep to regulate. What dose are you giving, when and are you following good sleep hygiene practices alongside it?

I know it's not a magic cure but I thought it would settle him a bit
We have brought bedtime forward, waking him early in the mornings. Reading and drawing before bed, nice long bath with soothing bubbles. He still can't sleep, he just stinks, whimpers and begs for something to get rid of his anxiety

Oh and 10ml dose

*stims not stinks

Is the liquid 5mg/5ml? If so, 10ml is not enough, you can give up to 25mg. How long before bedtime are you giving it?

We are giving it 2 hrs before bedtime
Ok tomorrow we will try more

always keep plugging away at it,it does (frustratingly) take a fair few days if consistency before any signs of improvement
Leap he's doing better than I expected tbh,school are doing their best giving him more time to settle,more tasks he likes to engage home etc.such a shame he will only get one year there and then need move on.
He got first advent gift yesterday which he was outwardly nonchalant but you could see he was chuffed.he unwrap it and was a biscuit,choc coin,joke,hat and a small robin cross-stitch (he loves his birds)

*engage him

How long can we keep giving the meds? Is it just a few days?

Always only you can decide that. The drug is not licensed for use in children for sleep so GPs won’t prescribe it and unless extreme circumstances specialists do not prescribe it long term either. However, you can take it longer term for other conditions. 2 hours is probably a bit too long. When used to aid sleep the NHS recommend 20mins before bed, but I know some people need to take it closer to an hour before.

Zoo that is a shame DS has to move on so soon. No matter how old DC get inside they wouldn’t be disappointed if you didn’t do advent calendars. This year I bought DD2 (21) a colin the caterpillar one.

Back from the Attendance Panel.

LEA person was a human being. It turns out school have referred us in which will be new Deputy Head. LEA man said he didn't know why school had taken it upon themselves to do so given that there was evidence DD was clearly unwell, we as parents were highly engaged and doing everything possible. Felt somewhat vindicated.

Am still worried though as we are now "in the system". I feel like making a complaint in all honesty but not sure that will help matters.

As it goes we'd had a meeting with the SENCo immediately before who has added DD to the ASD pathway, started the EHCP process, and put her on the waiting list for the Ed psych. We're going to officially attempt a reduced timetable but it still involved attempting to go in each day. I can't see it happening.

Didn't sign anything.

definition sounds promising?

I am furious
Head unit came to see D's with head english from the main school.they asked he would like try lessons there
He freaked out messaging me saying he had go to big school.wanted come home and never go back...
They mustve realised made a faux Pas,as she got lower minion to ring me saying was miss understanding and they ment if at any point he would like to..we all know he excels at english.we also all know HE CANNOT COPE in a big busy school.i was extremely angry and told them very firmly I was really disappointed in them even suggesting such a thing.

Phew, madness. I am glad they could see there was no need for the panel. I couldn’t understand why you had been referred as they are used to try to improve attendance to avoid prosecution. Which obviously isn’t appropriate in your case! Don’t worry about being in ‘the system’, as long as it is recognised DD can’t attend that’s no bad thing.

If you are applying for an EHCNA and the LA agree to assess you do not need to sit on the waiting list for an EP. One must be part of the needs assessment. If the LA EP can’t assess within the statutory timescale the LA must commission an independent assessment. To make you aware, unless the part time timetable is short term working towards reintegration it is illegal, whether or not you agree. Did you discuss medical needs tuition?

Zoo not surprised you are furious. It’s too soon to suggest that, DS needs longer to settle in before even contemplating it.

zoo I’m not surprised your furious!

Ds has had another massive post school meltdown tonight he says there’s nothing there but I know we are missing something.

His report suggests he is doing ok academically in everything but English. He hates music and is having to leave every lesson so I am going to push school to withdraw him from music so he can have focused support for his English for that hour a week instead.

"To make you aware, unless the part time timetable is short term working towards reintegration it is illegal, whether or not you agree. Did you discuss medical needs tuition?"

thanks @1leapforward2back - How do you mean illegal? Its definitely temp to review in Feb. I'm not sure she will manage it. It still means her being in school daily even if short days/in learning support.

I have asked the school about Medical Needs tuition but they haven't replied.

Re the ECHP literally today after chasing since Sept this is the first meeting we've had with SENDco - she said get her on the EP list and then when we reapply for EHCP (assumption they'll refuse to assess, admitted it was a battle of budgets) we'll have that evidence.

God, I'm already exhausted from arranging my face.

@Stilllivinginazoo that is plainly ridiculous. What is the matter with these people?

He's very very miserable tonight.glad we have decided to put up the tree this weekend and decorate DC rooms(they have tiny 12" trees) and I bought a simple Dino Xmas cookie set on a whim earlier,so will probs do that too try keep him distracted.on Sunday dd2 having covid Vax part 2,so expecting some wibbling as has bad health anxiety/hyper body aware

Sirzy I hope you get to the bottom of it soon. Withdrawal from music sounds like a good idea. DS3 doesn’t attend all lessons because he can’t cope with some. Instead the time is spent providing the other provision in his EHCP.

Madness as in part time timetables that aren’t short term working towards reintegration should not legally happen even if parents agree to it. OFSTED and the LGO in particular are quite hot on the matter. If DD cannot attend school full time she should be provided with alternative provision. It’s the LA responsible for medical needs tuition, not the school, so contact the Director of Children’s Services.

Reapply for an EHCNA now, don’t wait, you can do it yourself. IPSEA have a model letter you can use. Schools often needlessly delay. The threshold for a needs assessment is relatively low - a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. You have enough evidence DD meets this threshold. Anything else is unlawful.

Zoo I’m not surprised DS is down. Hopefully the school won’t pull such a stunt again. It’s brilliant they recognised DS’s ability put their handling leaves a lot to be desired. Have you seen the 3D dinosaur cookie cutters?

leaplink for those??
I got these as I think other than the oven he can pretty much make by himself💖

Zoo these. There is a space version too. We have far too many cookie cutters .

Hi all, I'm back from working abroad for 3 days - it was a bit nerve wracking, but it feels amazing that I was able to do this, compared to just a couple of months ago when I was up several times a night to check on DD, and could only work from home (DH was with her, but we're even confident to leave her alone for very short periods of time, although we wouldn't give her prior notice of it).

Fluffy - it sounds like you have had an awful couple of years. I hope that you can find some time to take care of yourself.

Zoo - are you sure that you wouldn't qualify for some DLA for DD3? The award is made not on needs, but on how much time you spend each day supporting her. We found it quite an interesting process to fill out the forms and realise how much time we spend on really every day things - cooking separate meals, making sure she gets into the shower, then coaxing her out again! Getting up in the night for nightmares etc. In terms of needs, it's very much a deficit model, so you have to think about what they can't do in comparison to peers of a similar age. With DS, there is such a frustrating lack of understanding around anxiety in schools. They seem to have the idea that kids should be pushed to do the maximum they can manage at any one point even if the result of that is being able to do far less for the following weeks/months!

Madness - I'm glad the panel was sensensible. As others have pointed out though, part time attendence as a suggestion of the school constitutes an illegal exclusion, even if you agree with it.

Despite landing up on this thread because DD15 has severe depression, we are finally starting to uncover the extent of her anxiety. We are discussing an assistance dog, and she opened up last night about how it feels to go into a shop, and all the thoughts that go through her head. We had no idea what the extent of this was and it has obviously been a huge part of causing her depression. She talked about a constant feeling of impending disaster, and how she worries about absolutely everything, every possible scenario, from dropping something on the floor to not having the right money, to armed robbery. Any advice as to what therapies to look into for an anxious autistic teen? We will need to be prepared if we want to get it on her EHCP...

Morning, Just checking in.
Hope Xmas Dec's are up zoo, good luck with school today.
We also put ours up at weekend although I couldnt tempt DD to come out her room to help. She did however come with us on Saturday to visit her sister at uni which was massive, she hasn't done that in 2 years, so happy she came with us, she was clearly very anxious but she did it.

Madness - I echo what leap says about part time timetables, DD was on one for a year with the best intentions, shes school refusing and it was meant to be a way of reintroducing her to school, sadly it didnt work for DD , she still found going in difficult and then of course she got behind in every single lesson which really didn't help.
Over a year later we are still trying to get medical needs tuition, until very recently our LA/ NHS Trust refused to provide this for MH needs however this has been challenged and they now accepting pupils with MH needs but we are still waiting......

We got our working draft EHCP through for appeal on Friday, we are appealing for EOTAS but think this is much more difficult than appealing for school, looking at the document not sure what to do with it and feeling totally overwhelmed. LA still haven't named a school and haven't been in touch to offer any school viewings I strongly suspect they can't find a suitable school with a place.
Starting to despair she will ever get an education