Parents and carers of anxious teens(part 7)

[Stilllivinginazoo]

Goodness,seventh thread!
Welcome back to those who have been on board with me since the days DS was first struggling,and hello to new faces

This thread is for those who care for anxious teens.some of us have diagnosis of ASD/anxiety/depression,others are encountering and navigating escalating symptoms that are starting to prove troublesome

This is a safe,non judgemental space to share ideas,offload worries and provide support and kind words for those deep in the trenches

We get how utterly exhausting it can be and are not afraid to celebrate the small wins that in regular circles would be deemed as insignificant as participating in "normal activities"

@Runnerduck34
Thank you! I hope the transition to sertraline goes OK too.
I dread the suicide watch with the medication change.
Having said that, it is heartbreaking to hear DD say she is suicidal pretty much most days...

@DarkChocHolic so sorry your DD is so very low- it is heartbreaking I hope your DD turns a corner soon. I know what a toll it takes on us too. Take care if yourself

@DarkChocHolic I am so sorry to hear your dd is feeling so low, will be thinking of you whilst she transitions medication and trials ADHD meds. Really hope it goes ok.

With regards to us and ADHD meds - We are still on the very low dosage so dc doesn't feel like it does much but on the plus side there have been no side effects although yesterday dc had the physical symptoms of a panic attack without the actual panic. Sleep has been unaffected so far. Not sure if it was anything to do with the meds or not. However, I have noticed on this low dosage that they are less prone to emotional meltdowns and outbursts. Things that would have set them off before, might annoy them still but no explosion. We move onto a higher dose tomorrow. I will let you know how we get on.

Hope everyone has a restful weekend.

@Okisenough
I Will keep fingers crossed for you and DC for the increased dose.
No side effects is a win in itself.
Xx

Good luck with the new meds- such a worrying time but I hope it goes smoother than expected.

How is everyone?
The sun is shining here so that has cheered me up.
DD doing OK but a bit tearful and emotional today.
Lots of last minute changes with tutoring company who provide her education which are adding to my stress levels.
Waiting for our LA to finalise EHCP as amended by tribunal but don't doubt they will take the full 5 weeks they are allowed to issue it- despite tribunal having updated it already, as they wont have to fund it until its issued so will save a month's fees.

Was sunny here too! Yep last minute changes can really cause chaos and add stress you don't need. It is so sad that local government puts money first and lets children/people flounder.

Hope everyone is doing well. Haven't heard from @Stilllivinginazoo for a while, I hope you and your dc are all ok.

Our medication journey is going ok, no real side effects thank goodness but dc doesn't feel like they are doing much. So I suspect when we have the review meeting, we will need to discuss whether we should go up to a higher dose or try something different. I have noticed that their emotional regulation has improved but it definitely isn't a miracle cure. I was reminded of that today when they came home upset and stressed about school. It doesn't change the fact things are still difficult for them and things that they find traumatic are still triggering. We just understand why things are hard now. I have to keep reminding myself and them that school is nearly over and that is it. I don't know whether the next chapter will be better but we now have a diagnosis and so we can make amendments and adjust our own expectations so hopefully things will at least be easier!

Hope everyone has a good Friday and weekend

@Runnerduck34
What a pity you still have to go through so much wrangling even after the tribunal. Such a shame. Hope the tutoring company issue is sorted soon.

@Okisenough
Glad you note some improvement in DCs emotional regulation. I empathise when you say it's not a be all cure.
I say the same to myself..no.magic drug out there.
What dose is DC on?

My Dd started xaggitin XL on Sunday and is increasing dose to 27mg after 7 days. She also switched to sertraline yesterday on 50mg.
She feels flu like today and came back within half an hour from school which I fully expected.
Her appetite is all over the place but she says she feels slightly calmer..
Though I can sense the "buzz" around 9 pm which I suspect is the meds wearing off. She was rearranging furniture in her room and tidying up at 10.00 pm!!!
This is her impulsiveness to "change everything about her room as she cannot change everything about her body which she hates"

Have a good weekend everyone.. oh please stop raining!
Xx

@DarkChocHolic 27mg, I keep hearing that when you hit the right dose, the patient notices an obvious difference so I assume the medication for my dc will be increased to the next dose which I think is 34 /36mg. Today has been better and I am happy that the weekend is here!
I hope the medication changes help your dd x

3 more days and then 16 off which I am not looking forward to, going back is hard also.
We have constant wins, followed by loses. If she has a good day then she has a massive crash afterwards anyway.
Unusually I had to go in and collect her today after an hour, I was really looking forward to the time off as she’s only very part time. The next 3 days are only 2 hours and just not enough to go anywhere or do anything. I really hoped she would be in more by now.
It’s clear GCSE exams next year are going to be a disaster and I’m not looking forward to it at all. I wish we had a few more years before we were getting there.

@MinionKevin
Sorry to hear!
I cherish the time I get alone from DD and her worries too so I understand how you felt when you had to collect her early.
There is still time for gcse if it is next year. Is there an option to drop subjects and lighten the load?
I think doing the bare minimum for next stage is a good idea that many have given on MN.

DD is on reduced timetable too. Was meant to ramp up after Feb half term and obviously that hasn't happened.
The stress of school is just unbelievable for these young people...such a sad state.

@DarkChocHolic shes not doing the full lot anyway. She hasn’t done science since year 7 so I think at this stage it’s best to forget it.
It’s the maths and English is the problem and she has to do them. They are getting her back with the maths tutor and hoping to go to some English lessons soon.
Id love her to do history, if she could do it as self led I would be happy as I think she’s smart enough to do it.

She only goes in for an hour on a Friday which is no good for either of us. They are trying to allocate some TA time to stretch it out. Personally I would like her in 3 hours minimum. There’s a quiet room to work in but she’s nervous to go, so need to work on that. Sometimes I wish I could go into school and take her, it really would be easier.
2 days to go.

@MinionKevin and @DarkChocHolic that sounds really tough- the crashes after the highs are hard to see- but totally normally in this situation.
Constantly being on high alert and waiting to see if they will go into school then on tenterhooks to see you get a phone call to pick them up is gruelling.
My DD was on a reduced timetable but I think it made her more anxious, socially isolated and worried about being behind her peers.
Part time timetables are meant to be short term- DDs dragged on for over a year which in retrospect was just hiding the fact school wasnt the right place for her at all. Trying to make her change to fit an environment she found distressing just wasnt working and caused her (and me) enormous stress .
There are no easy answers, the societal pressure for DC to be in school and to sit GCSEs is huge.
If your child doesnt have an EHCP then apply-they can be in place for post 16 education support.
Also apply for DLA or PIP depending on age and where in UK you are.
The amount of support your DC needs is far above that of a child their age.

I had the house to myself today for 3 hours !!!!! it was bliss even though I was working from home, it reminds me how important some time alone is to me.
Still waiting for LA to amend EHCP after tribunal-they have 5 weeks and no doubt will use maximum time allowed-then once its issued will have to get it implemented/funding.
Im looking forward to school holidays even though I am working through most of it- I fought for DDs EOTAS package but every single day Im making phone calls/texting/emailing, always something, tutor off sick, DD too anxious to go in, taxi driver stuck in traffic, invoices, its never ending- todays been quite good only 2 emails and 1 text!

@Stilllivinginazoo how are you? I hope everythings ok
@1spinforward2back Have you got your tribunal decision yet?

@Runnerduck34
We have autism assessment this week and i plan to start ehcna after that.
DD is Still insistent she wants to stay at current school and course.
She says she doesn't like change and doesn't want alternate provision.
She doesn't want online schooling either. So I am wondering even if we miraculously get ehcp what is th point?
I feel she will stay on at current school till next year and leave with no qualification. That will then give her closure and she will move on and be ready for next steps only after.
We have come to accept that to be honest.
On the plus side, the adhd medication seems to be working.
She says she is calmer, less impulsive and she seems happier too.
She also seems to be coping on the fluoxetine to sertraline switch. I was dreading starting adhd medication and anti depressant switch at the same time but it seems OK so far...
I have jinxed it now haven't I !!!!

Hope everyone is doing OK?
Haven't heard from ordinary in a while.

Xx

@Runnerduck34’s advice is spot on.

@DarkChocHolic the assessments included in an EHCNA will help everyone understand DD’s needs better and the support she requires.

An EHCP can provide therapies DD wouldn’t otherwise receive, more often, more frequently and for longer than otherwise. If the current school is inappropriate the provision should support her to be able to access something else. DD wants to stay at the current school despite it being overwhelming because it is the known and the unknown is scary. She needs support to transition to something more suitable.

Besides, if you have to appeal, potentially more than once, it could well be next year or longer before you have an adequate EHCP. But they can continue until 25, or 26 in some cases, so it is still worth it.

@MinionKevin have you requested alternative provision?

@Runnerduck34 I am glad you got some much needed time on your own. We won. I have posted about it elsewhere on MN under another name so I will PM you.

@1spinforward2back
Am so happy you won the tribunal!
Great news.....
You have provided so much support to others on this thread and I am genuinely pleased for you.
Will get the ehcna ball rolling this weekend.
Xx

@DarkChocHolic thank you. To give you an example of how the unknown is scary. The outcome of DS3’s tribunal is what he wanted, but when we told him he cried because it means leaving his current school even though he isn’t attending full-time and when he is there is isn’t going into lessons. The transition will be hard for him, and therefore us all, but longer term it is for the best.

Congratulations Spin!
So pleased for you, I Hope DS adjusts , accepting school didn't work out is really hard .
My DD also insisted she didn't want to change schools despite being too anxious to attend. It took her a long time to accept it wasn't working but by time we'd gone through ehcp process and tribunal - which took 18 months!- she understood she needed a change of provision.

Pleased the adhd meds are working darkchocholic, good luck with autism assessment.
I would start ball rolling with ECHNA straight away- DD was waiting diagnosis when we started the process.
You can add reports later on.

@1spinforward2back she was offered but she is another who doesn’t like change. She does have a lovely group of friends at school and has a good relationship with certain teachers.
She copes with actual school much more, it’s the content of lessons that’s the issue still.
She is already stressed about what will happen after next year as clearly she can’t stay for 6th form. There is art college but it’s all new people.

After the meltdown the other day the senco is finding her a little more TA and maths tutor time. Which all really helps her. She had an amazing TA last year but she left for teacher training. She could push her whilst in school, makes a big difference, I need someone like that again, someone who she likes and trusts.

@MinionKevin definitely request an EHCNA. That is the route to ensuring more support, including TA support.

In the meantime, AP doesn’t have to be instead of school. DD could still continue with whatever school she can attend. Then AP, such as a maths tutor, for the other time. The provision should be adjusted so DD gets to a point where she can access other support. It doesn’t happen overnight and the first support isn’t always the right type.

I'm about to take my dd off the school roll. Year 10, EBSA, ASD anxiety. She had a No to ECHNA because the LA say that the schol need to provide more evidence if what they have done to het her back in. I have an online school lined up which dd is happy to do.

Can I still appeal the No decision to assess if I take her off roll? We just want to move on with certainty.

Thanks!

@MackenCheese you would still be able to appeal the refusal to assess.

However, personally, I would advise not deregistering. It is often easier, although not easy, to get support when DC remains on the school’s roll even if they can’t attend. Crudely, you are someone’s ‘problem’ whereas it is easier for others to sweep DC’s needs under the carpet if you deregister.

Also, if DD can’t attend school, the LA has a statutory duty to ensure she still receives a suitable full-time education, that could be online school, but if you EHE you relieve the LA of their duty.

I know thank you, but it leaves things very uncertain for my daughter. The LA agenda is to provide alternative provision (already waiting to start) which is temporary with a view to getting her back into school.

I want to propose they pay for the online school (not AP) until 16 as she cannot attend school and I'm appealing. At least that would give my dd a sure foundation for next year. Can I do that? I don't want to burn bridges, and if I give up and EHE I worry I can't appeal.

it leaves things very uncertain for my daughter.

It is no more uncertain than deregistering and appealing. From DD’s perspective both scenarios can mean DD never returns to the school and both scenarios can mean you can appeal the refusal to assess. Both can mean online school if that is what is suitable.

I want to propose they pay for the online school (not AP) until 16 as she cannot attend school and I'm appealing.

If you deregister and EHE the LA is highly unlikely to fund any s19 AP. They will say you are making suitable alternative arrangements thereby relieving them of their s19 duties.

The LA agenda is to provide alternative provision (already waiting to start) which is temporary with a view to getting her back into school.

Of course. The majority will return their current school or another school. For those where returning to a school isn’t suitable, s19 provision is temporary until EOTAS via an EHCP is put in place (even if that means via appeals).