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!

A bit late Runner. Legally the LA must finalise the phase transfer EHCP by Friday.

Have evidence of progress and the continued appropriateness of EOTAS.

Write a list of amendments you want/need and evidence to support them. Split these into the EHCP sections (e.g. B, C, F etc.) and then split the amendments needed in each EHCP section in to 3: 1) what is included already but where the wording is vague and woolly so needs tightening up, 2) what is included already but needs altering e.g. if you need more tuition hours in F, and 3) things that aren’t already in the EHCP. If the EHCP is right then the continuation of EOTAS should not be in dispute.

Look at PfA, especially as I don’t think your current EHCP includes much/any.

Make a list of anything that isn’t working but the SEP doesn’t need changing e.g. anything where the problem is the LA not the provision. Also a list of anything else you want to mention and any questions you have.

During the AR take minutes. If it is looking like the LA are going to remove provision, name a placement or cease I would remind the LA they should not remove provision recently ordered by SENDIST simply because they disagree with it. They must have new evidence. But don’t mention this unless it is looking like the LA are going to as you don’t want to put ideas in the caseworker’s head.

Today DS1 has needed a lot of time on the trampoline and other sensory stuff we have to self regulate. I’m not quite sure why.

@cleowasmycat hello my DD was the same very anxious at school she ended up never completing school she was so unwell she couldn’t attend. She was 4 weeks off her 18th birthday and the GP was still refusing to prescribe a SSRI, 4 weeks!!!! After a lot of arguing he did then she got anxious after reading the side-effects convinced herself she had them all and stopped after a week.

positives this week she went outside to a show with me first time she’s out clothes on and stepped outside in over a month and only the second time this year.

Cleowe were refused kalms at pharmacy under 18.reescuecremedy(Bach flowers) helped for a bit,esp the night one).g.p can prescribe Propranolol which slows the heartbeat which eases panic attacks<worth's try>
Runner I could scream the hoops you have been jumping through💐
Bounce hope D's is ok.
Sweet kitty we do love a positive story,that's wonderful news to share!

Meet went ok,we are going in on Wednesday to sign a contract with school basically lil zoo starts Thursday phased return..as part of this she must attend even if feels unwell but has designated areas to go to if class feels to much,ditto if during lessons she feels unwell it's an hour a day for Thursday and Friday so she doesn't have Easter hols to dwell in stuff,building to two hours on second or third week week depending how she's managing then a review which I thinks very reasonable given we know it's her perception of pain/stomachache which is actually anxiety that's causing the block to be there.faikure to attend will lead to school contcting LA for external agency support and if that fails they will need to look at if a school change is required.as she doesn't seem to find anything particular difficult<IE overwhelm at size school etc>I think it'll be ok UNLESS she's masking,which with her it's hard to tell.they are also intending to put her with a similar ASD girl in time in the hope of building a friendship.
Senco have been putting together ehcp paperwork,and now her ASD diagnosis paperwork is in they can send it off shortly

Bounce, thank you so much, that's really clear advice to follow and so helpful. I hope your DS is OK today but it's really good he has strategies to regulate and recognises when he needs to use them.

Zoo, I've got everything crossed for lilzoos phased return. I hope school send paperwork off for EHCP before Easter holidays.

Sweet kitty- thats fantastic- a huge win, it made me smile. I hope DD is OK today, my DD usually crashes after a big achievement and needs a day of complete rest.
ime it's often a bumpy road , one step forward one step back but a great sign she is starting to reengage.

Sweetkitty that is lovely to hear. I agree with Runner, DC often need time to recover so don’t worry if it appears DD goes backwards in the coming days.

Zoo I’m glad the meeting went OK and an EHCP is going to be applied for. I still feel you need to push for medical needs tuition as well as trying a phased return. Part time timetables should be short term, that is usually considered 6 weeks ish. Given DD3’s needs it is unlikely she is going to be able to attend full time in 6 weeks, so other provision should be being made as well.

Runner DS1 needs lots of prompting and direction to self regulate so whilst it’s progress we aren’t quite at the point where he recognises what he needs.

I agree that it is definitely a bumpy road, we have a good day and I think yes progress and then the next day we hit a bump and go flying! DD came from school and had a real meltdown, very angry but also sad. She starts with her therapist properly this week, and I am already nervous as she seems to be backtracking and saying things like zoom is glitchy and the therapist looks scary. Not sure if I should encourage her to go through with it or pull her out. She didn't want to start the beta blockers until Easter but I think it would be better to start now while she is at school to see if they help her cope. When she's at home, she's normally fine, so what would be the point then. I feel a bit defeated today.

@Stilllivinginazoo Good luck for Thursday

I have given myself a gentle talk tonight and now feel better. I need to remember to look after myself a little bit as have been feeling more and more overwhelmed lately.

okisenough absolutely,it's all too easy to put everything we have into trying to help our children but we cannot do that if we are overwhelmed and exhausted ourselves💐

How is everyone?

We have had a quiet day after a busy week.

Happy Easter everyone.
We had extended family round today, a bit chaotic with 3 DNs with ASC and ADHD, whose behaviour can be challenging and some intolerant adults!
But had a good day anyhow, after a bit of peacemaking!
DD was really good, she is favourite cousin by a mile and managed to spend most the day with us before retreating to her room.
I'm in the middle of 2 weeks annual leave so enjoying pottering around but its going too quickly and I think my plans of what I was going to do/ achieve was vastly ambitious!
DD just had her birthday, now 16. She had a couple of friends round and we went to a favourite cafe but in the evening was very depressed and tearful. She's still very up and down.

Runner I’m glad you had a good day, even if it wasn’t straightforward. Lovely to hear DD managed. With DSs I find hosting easier than going elsewhere. Happy belated birthday to DD. Birthdays can be difficult. I hope you manage at least some of what you planned.

Happy Easter to everyone. I hope you’re all well.
I’ve been grappling with something so challenging to me that I get palpitations. I’m wondering if anyone else has been through this. My mother's been very ill and in and out of hospital the last 15 months. We are very close and she was always there for us when the DC were younger. We’ve been discussing death etc to prepare the DC, and DS2 in particular has had therapy around this.
They are scared to attend the funeral and do not want to. They are 20 and 14 years old now and her only grandchildren. If it were only up to me I wouldn’t push them to attend, as I understand everyone processes things differently. However I am totally stressed with how my relatives will view this. My mother was born in Eastern Europe and her large family views funerals as an obligatory ritual to attend. Furthermore it is open casket which I know could traumatize my autistic boys. Not having older grandchildren present is something I have never seen before at other family funerals and I know I will be judged for their lack of resilience/“caring” in not attending. I think most know they are autistic but don’t comprehend how much their anxiety and OCD can affect their actual functioning in such a situation.
help!😥

Im so sorry your mothers so ill @vikingwoman
It sounds a very difficult and emotional time. Family dynamics are hard but do not feel you have to make your DC do anything they are uncomfortable with.
They are her grandchildren and some of her most loved and closest relatives. The funeral should be about celebrating your mums life and allowing people to mourn in their own way. I know this is easier said than done and your emotions must be all over the place right now but do what is best for your boys and you and ignore any misinformed comments or sniping, concentrate on whats important to you.

I read once about a ring of grief with the closest impacted in the centre then a series of rings around the centre which moving outwards to include other relatives, friends, colleagues etc People support those in the ring close to the centre but direct their own feelings of worry and distress to people in the outer circle. Try not to let those less impacted by your DMs death dump their expectations on you and your sons. You are in the centre and allowed to do whats right for you

Oh Viking, I am so sorry. I wouldn’t push DSs to attend if they don’t want to. You have to do what is right for you/them. As difficult as it is ignore what others think. You will be the one picking up the pieces, not them. Sadly some judge no matter what, I imagine you would be equally judged if DSs attend but find it too stressful.

DS1 has PTSD in relation to the death of DD1. He went to her funeral but hasn’t attended others since. He wouldn’t cope.

I want you thank you so much runner and bounce. I know it sways a bit from what this thread is about but I felt it was the only place I could share with those that understand.
I’ve actually saved both your responses - they were so helpful.
bounce, my apologies if my post brought up such a difficult topic.
❤

Viking you don’t have to apologise.

None of your relatives actually know what they would do as none of them are in your situation. It is easy for them to say what they think they would do when they aren’t actually in your shoes.

@vikingwoman I am so sorry to hear about your mum, and the situation you are having to deal with. I completely agree with the advice already given. The only thing I can add is a big virtual hug.

Sorry I've been MIA it's been busy/stressful here.

@vikingwoman I'm so very sorry about your mum lovely,and apologies for dipping so I wasn't here when you reached out to us.
Another vote for not letting the opinions of others override what you know is best for your boys.tou are their advocate and safety and there's no way I would push any of mine into something like this which has the potential for much distress.ds in particular olds into things he hears/sees that distress him and it would be traumatic both short and long-term.sending bighugs💐

@Runnerduck34 lovely to hear you DD had a nice birthday and spent time with others.anxiety can damage friendships/isolate teens so much.

How's everyone doing?back to school anxiety yet?

Little update on us.
DS has been very poorly since week before hols with worst cough/cold hes ever had.he literally never coughs,covid last year result few tickly coughs and that was first cough of his life (it's like he has limited reflex for it,having multiple chest infections as a young child??)he was very agitated by it and miserable.sidnt eat much week 1 and half of week 2.by Easter he was improving a little,then dd2 dropped...
It was wretched in things seem be improving then sneezing coughing worsened again😞he finally seemed better Thursday of this week .dd2 still cycling better/worse but much less affected bar can't smell or taste.neither tested positive on three seperate COVID tests.lil zoo and I(so far) remain free of it!
Easter was ok,did some clues and stickers local to us so they got a walk in on egg hunt.then lots anxiety issues on all three ment second hunt was shelved.finally did puzzle one at home yesterday,and whilst all liked it they don't work wellas a team as dd2 takes the rules very seriously and found D's and lil zoo messing around upsetting and words weresaid between them,which them reduced lil zoo to introvert as sees as personal attack<sigh >they completed it in the end for egg and decorated ginger chick biscuits with dinner.

Dd2 turned 19 on 13 th.she had texts from 2 friends,and was sad no one else she knew bothered.uts taught her who really cares and matters in the hardest of ways😞
Her dad took her to a pig sanctuary on his day off and she had a perfectly lovely time(pigs are her thing,and have been since forever)she came home with a top trump set of the rescue pigs and a LOT photos and videos of them❤️

Shessuffering so badly with anxiety I am very worried it's an autistic burnout(not officially diagnosed but given both others area d she's the one most "quirky" and child like I will be stunned if she isn't) and no idea how to help her.
Exams are looming,submitted coursework was done on last day available with lots stressed meltdowns.norevising or completing of content had occured she's adamant not trying us failure yet every time attempts to work has meltdowns.she on constant edge,irritable and depressed.escitalopram was given two weeks ago,with phone review booked Friday that wasn't given.i rang to query on Friday at teatime,assuming was just a busy day at surgery.reception promised email him but heard nothing.not happy at all.
She's panicking sec Wakes til moment asleep,requiring intense reassurance over everything from eating to "I'm going to be ok".it's a huge drain and she has no let up,rarely leaves my side.bedtimes now include lay on me for Enid blyton to be read to her(wishing chair)

I'm at breaking point myself of exhaustion and depression.if she doesn't do exams,go uni then what?fears she will end up having nothing to work towards and getting more unwell plague my thoughts.any ideas/thought welcome.

Sorry for the essay,wil check in again tonight see how those with school returners tom are doing x

Very quiet here.hope everyone's doing ok.
DS was stressed but was ready for his 730 taxi.

Lil zoo went,albeit it 5mibs later than planned as she refused eave until the feeling needed the loo subsided.

Dd2 still here,contemplating if should do today lesson(11-1 sociology) I'd hoped someone might've been around with a nugget of wisdom over what we should do about her a levels/education

Sorry I wasn’t around this morning Zoo when you needed someone.

Happy belated birthday to DD2. Birthdays can be difficult, bringing lots of issues to the fore. Sorry to hear DS and DD2 have been unwell.

The transition back to school after holidays isn’t easy. Despite not finding it easy it is brilliant DS and DD3 managed to go to school today. For DD2, I would remove all expectations and say if she attends, she attends and if she doesn’t, she doesn’t. And if you haven’t already apply for an EHCNA if you suspect university won’t happen.

Have you asked for social care assessments? They could provide support to you all, but especially relieve some of the pressure on you caring for DD2.

DS3 was very stressed about going back to school, but he is there, which is a positive since I wasn’t convinced he would go.

Hello zoo, so sorry you are having such a difficult time especially with DD2.
So pleased ds and lilzoo managed school today.
I feel so much for your DD2, it does sound like it could be autism burnout. I wouldn't put pressure on her to go to school and echp bounces advice. So eased she got her coursework in, that is a big deal. I'll keep everything crossed for exams. Does she havd special consideration, extra time, quiet room etc? I would slso ask school if they would gknsidef applying for special consideration in the event she manages to do one or two papers/ exams for a Subject but misses one of them. Exam boards can give average grades in such situations, helps to have a letter from medical professional, definitely worth investigating .
Birthdays often end in tears, too much expectation. You're right MH can leave our teens very isolated, my dd has 2 friends she's managed to keep in contact with but others have fallen by wayside. I'm am very grateful for those 2 friends.

DD has her first tutoring session today, I'm not entirely sure she's going to.manage it tbh but she won't say a outright no.
Going back is hard, I return to work tomorrow not looking forward to it.
I've got EHCP annual review coming up, and have just had a letter about applying to transfer to pip now dd is 16 , she also have a review appointment at camhs re medication and we've just been told she doesn't meet criteria for a full ADHD assessment, which was a surprise after what her tutors and psychiatrist said- so lots to think about.... but I just want to hide under the duvet tbh!!

Hello everyone.
@Runnerduck34 @Stilllivinginazoo belated birthday wishes to both of your daughters.

@Stilllivinginazoo it sounds like you have had a really difficult time recently and I am sending you a huge hug as I know the toll it must be taking on you physically and emotionally. In terms of her A-levels, has she got a plan for revision? My dd gets into a spin about revision with thoughts racing all over the place to the point of almost blind panic, but often if myself or dh discuss a plan with her she then calms down. Yesterday it was heading that way, and I said did you plan to do xxxx today, yes, then stick to doing that and don't worry about xxxx as that's tomorrow. It worked and fingers crossed it continues too. I do understand your worries for her future as it also stresses me out a lot. We went from looking at places all over the UK to universities within a two-hour train journey and now we are thinking within commuting distance or a year out. I don't know what will happen. Things have been better and I don't know whether that is due to beta blockers, the therapy, being off school or a mixture of all of the above. Once school resumes, I guess I will know! The school thought it would be a good idea to have mocks straight after Easter, downside less restful holidays but upside she only has to go into school for exams this week.

For all the dcs back at school, I hope it is going well for them.

@Runnerduck34 hope the tutoring session went well for your dd

How is everyone doing?

DD has managed most lessons/ therapies but not all, its never all! But Im better at accepting that.
Shes had huge mood swings, happy ,chatting non stop one minute then low and tearful and feeling suicidal the next. Im not sure if increased medication is helping or making it worse.
But sometimes shes seemed really hyper and behaving a bit odd. Which is concerning.
Things have settled down a bit now though.
Neurodevelopment team have scored her ADHD forms and said she doesmt meet threshold to go on waiting list for ADHD diagnosis.
Ive got mixed feelings, its obviously positive if she doesnt have ADHD but her psychiatrist, senco and SALT all independently seemed to think it was a possibility so now Im a bit confused/ unsure. wondering if CAMHS have just decided shes 16 wont get to top of their wait list or shes not severe enough to go on waiting list,
Or maybe i should just trust good news?!
I think shes got some traits but it seems hard to tell as a lay person whats autism and whats adhd.

Still trying to prep for annual review. Trying to figure out changes for EHCP , if shes met targets and if they need changing , what wording to suggest and gather evidence etc rather be reading a good book or watching a box set- although my concentration is rubbish atm!

Runner* that sounds hard.im rubbish at making decisions!
Hard to tell on criteria front,like you say as lay people who knows for sure what meets criteria?

Dd2 still not doing great,school rang yesterday and when I said I'm not convinced will be for to sit exams they go as exam officer give us a ring.at this point still no revision done,I can't decide for her what to do as it's such a big life decision really- sit or not,affecting uni options after already going back a year.i have no further education and am frankly a bit overwhelmed and confused by options..and she's getting very stressed.
Lurgy D's had,then gave dd2 finally reached me last wednesday.thurssay and Friday couldn't move off sofa,but after that case have pick up and carry in.kids were ill best part three weeks before back to full power and I'm very very tired and bleurgh but it degenerates so fast if I turn my back on stuff as no one helps consistent clear up etc.

Lil zoo has,so far been in school for her two hours everyday as agreed,some in lessons and some in pink room.wibbled about going yesterday but did go as knew was only there for a while.review if hours due again soon I think.

How's everyone else doing?

Im sorry youve been so ill zoo, it is hard to rest when you are responsible for everything in the house.

We are also unsure if DD will manage to sit GCSE maths- the only GCSE she is sitting this year. She walked out of maths lesson last week, shes incredibly stressed about the whole thing , hasnt done any revision or test papers.
She says shes going to fail.
Ive no idea if she will manage the 3 exams that she needs to sit for the gcse.
Ive said to her its her decision if she sits it or not and if she wants to do it next year instead its fine. she does have the option to sit the exam to next year which I realise your DD doesnt.
The BF of my oldest DD dropped out of Alevels and has just completed an online access course and now has a offer to study environmental science at Reading uni from september so being unable to sit Alevels isnt the end of the world even though it can feel like it, especially after doing all the coursework.