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!

Moggy If the tutor and well-being department haven’t been helpful I would contact the course director and head of disability services.


Zoo I’m sorry things are so difficult. It’s worth reconsidering help from social care - a carer’s assessment for you and assessment via the disabled children’s team and adult social care for DC. There’s only so much you can carry yourself.

I hope the trampoline and camera help DD2 self regulate. The GP will be able to adjust DD2’s medication, can you try to get an appointment with them whilst waiting for the adult MH team. Does DS take anything to help with his sleep? Hopefully once school restarts he will get back into a better routine.

How is everyone?
DD restarts tomorrow after being initially told by her tutor it was next week. Quite remarkably she has taken this last minute change in her stride, although tbf it's her favourite lesson tomorrow.
I hope the return to school and work goes as smoothly as possible for everyone. Wishing you all luck.

bounceD's refuses meds to do anything,even his migraines preferring just lay still til passes.
G.p isn't comfortable changing dd2 meds as her age increases suicide risks.
DS went back to school yesterday.taxi was 20 minutes late,and he was very anxious.but he did it and say was "ok".(helped he had ceramics,and today has animal care).
Girls are due back today.dd2 nervous wreck.shes been really restless overnight,so I'm very tired and so will she be mock a levels start tom and barely revising as simply cannot absorb the necessary information ...
I had a call camhs yesterday.to reduce backlog they're doing ASD assessment and had a cancellation for this Friday if we wanted it for dd
.i snap that up so we going in morning for it.its in our town,as opposed next one over that D's had his done which is easier for us.
She has CBT camhs today(I'd forgotten about that)so going to be back and forth there this week!she has a fringe added yesterday afte six months of begging and me be reluctant case hated it and freaked out.it looks lovely,but I do fear the maintenance of blow dry it to stop it parting and fact she has slightly wavy hair so it needs some taming will be a flashpoint as her need for everything to be just so can be quite overwhelming.

Good luck to all those returning today/this week hope it goes as smoothly as possible🍀🍀🍀🍀

*dd3 has the fringe,camhs and assessment this week

Sending you and your DC lots luck for today zoo.
I hope this morning was bearable.
Good luck to DD2 for her mocks. Did you get access arrangements resolved?
Pethaps she needs to consider stepping away from A levels if it becomes too much for her MH and do an access course for uni instead when her MH has improved. Even researching this might make her feel anxious about A levels as it would be a plan b? I do admire her determination to keep pushing when she is so so very anxious but it can be detrimental.
Well done to DS for managing yesterday.
Cancellation for Autism assessment is like a lottery win- hurrah- you deserve some luck!
I hope this week goes OK. Take care of yourself

I'm furious.cbt workertold dd3 she needs think she actually wants CBT if not they stop next week.what really got me was told her she doesn't have to do ASD assessment if doesn't want to.not his place to say that😤

How is everyone?

Not a great week here so far, not getting into school at all and gradually retreating from activities again due to anxiety.

I know this is about him and not me but I honestly don't think I can keep doing this. How do you all stay so strong? Tonight I feel like I want to run away.

Also what do you do about online use? He's glued to his phone, I worry whether the social media stuff he is accessing is making him worse. We do have filters etc but he's quite secretive, I feel like limiting his use would possibly help but I'm also aware that it's a vital connection to his friends, particularly when he's not seeing them.

takingtimehow old is D's?(my brain is not firing well,so apologies if I'm asking the same questions repeatedly,I come in via my phone and hard to scroll backwards through the thread)
I don't limit phone time as such as my youngest is 15,but I do if it's to the detriment of EVERYTHING else(and only then) so I will encourage to do X,y,z then gave it back so it's limited removal but achieving necessary interactions(unless it's dd2 then I don't as walking together is her big support and she vlogs/takes photos on it whilst we are out).

It is hard not to take it personally,and to feel bogged down by it all.thats no different from any of us!watching your child fold in on themselves to a shell of the person you knew isn't easy and anyone who hasn't been there wouldn't know just how gut wrenching it is.i wish sometimes they were small and I could just give them a cuddle and make it better.but I know I cannot.

The only way to help you child is to remain consistent and strong and to do that you have to look after yourself.easier said than done I know,but it's the only way to protect your mental health from sliding under the stress.
Think if what helps you cope- preferably not alcohol/food/destructive behaviours(we've all been there applying face to copious amount sweets etc to try and numb the hurt).
The "pillars of health and wellbeing" are sleep,movement,food,hydration,and relaxation/things to do for pleasure and calming.
Sleep I think is the biggest,less than 6/7 hours and you will feel it keenly.ive almost got dd2 down to before 11 every night we settle(à tnearly 18 she's currently sleeping on me as cannot regulate)as I get up at 6 to sort D's to be ready for school taxi by 720.
I'm not so good with the hydration and food.i get the theory but I don't have thirst cues and rarely get hungry so that's one of my works in progress for this year!
do you exercise/do yoga/walk?movement has a huge impact on how well I manage.i walk daily,lucky enough to live near a protect wildlife reserve so I spend hours each week treading familiar to me paths and watching birds,squirrels,foxes and rabbits go about their business and focus on the wind on my face,the changing landscape of the seasons.
I also bake sometimes,and I read or colour(there are some great adult colouring books out there,swearing ones if that's your thing!)and knit.im learning to crochet too.i also love word puzzles.
Do I do these all daily ?nope.should I ? probably but I'm time poor and prioritise my walk and fit in anything else when there's time ,even if it's just a few minutes.
I say it over and over,you wouldn't let your phone battery die,don't let your emotional one!top it up with whatever works for you

@TakingTime2
Really sorry it's so difficult right now. I have been there, that awful sinking feeling when you wake up each morning not knowing if they will make it into school or what the day will hold.
Watching them retreat into themselves is heartbreaking.
You are right to recognise its about them and not you, so hard when you want to fix it all for them and can't. Don't blame yourself. Took me ages to get to the stage of accepting this!
Zoos advice is brilliant, and self care is so important but very hard to achieve.

DD only turned a corner when we stepped back removed all pressure and stopped trying to get her into school.
Tried to zip it and not keep asking her questions and anxiously hovering but listened to her , acknowledging how hard it is without leaping in and trying to fix everything.

Medication has also helped DD, therapy has limited success but she's best with activity based therapy like art so less intense focus on her.
I am rubbish at limiting phone use. Totally weak!! I do think it is harmful, for example she told me adverts for binders were just popping up so goodness knows what else was being pushed at her, but her phone was her only contact with school friends, used it to stream movies, music etc so it's a minefield.
I only ( barely) succeeded in removing it at 11pm so she didn't have it over night. This was a very stressful battle. When she was very ill I also tried to check messages, browser history etc to ensure nothing harmful
I hope today is OK.

Zoo I’m sorry CAMHS didn’t go well. Was it DD3 or the CAMHS psychologist that relayed what was said? If DD3, could she have said she didn’t want the assessment and part of his response was factually stating that any assessment would need her consent? Good news about the ASD assessment, I hope you can get DD3 there today.

The GP is being over cautious not altering DD2’s medication, they could start small and monitor her. What would they do if she didn’t meet the threshold for adult psychiatric input?

Runner I hope DD’s first week back is going well.

Takingtime Not being able to fix things is one of the hardest parts. We do limit screen time, and did the same for DDs. You can still limit screen time but allow enough time for him to communicate with friends. Did you apply for an EHCNA and ask for the LA to make alternative provision?

I comfort eat, not just related to DS1’s MH difficulties but other things too. I have started a diet as I currently weigh more than I ever have previously.

DS1 has been unwell for about a week now and gradually seems to be getting worse. His anxiety has increased too.

As ever thanks for the wise words zoo runner and bounce it's very much appreciated

After a failed attempt this am he got in for 2nd lesson.

He's 13 zoo but been dealing with school based anxiety on and off for quite a while.

Self care completely makes sense and is probably something I don't focus on. Sleep can be difficult for me, ds will often message me in the night saying he can't sleep then I end up awake worrying.

The thing I struggle with is that ds is so much happier when he's in school, he is literally a different boy, he comes home happy, he has a great bunch of friends and has really good reports from all his teachers. When he doesn't go in he is obviously unhappy, low, withdrawn, irritable with us.

If we back off entirely he just won't go in and that doesn't actually seem to make his mental health better, he just declines. He seems to respond better to a degree of firmness but trying to implement that without it feeling like pressure is hard!

School have been very good, he's always had plenty of reasonable adjustments but he doesn't like drawing attention to himself so doesn't engage with some of the options. I haven't formalised anything re applying for an EHCNA as I have felt school have been working hard to meet his needs but if he continues to struggle after the initial going back I will look at next week, I understand it might help identify hidden needs too.

I'll monitor the screen time, at the moment he will spend time with us, he does have his phone at night but I spoke to him last night about better sleep hygiene habits and encouraged him to read or watch a bit of light tv instead. I know he will kick off if we try to remove it at bed time as that's not something we've done since he was much younger. I worry about creating battles with him when he's low but I also know there does need to be boundaries.

Thanks again, it helps to share and hear others experiences

Time picking battles in this age group is deffo the name of the game!
Bounce is it a new illness or part of his ongoing difficulties?what a worry for you I hope he turns a corner on it very soon.
i comfort eat sweets,mainly because I get too stressed to eat they keep me upright.i am currently teetering on underweight.i have very disordered eating habits and no thirst(never have had) or hunger cues anymore.

Think assessment went ok.she couldn't do two of the tasks on the ADOS- one she was given a candle,playing card,car,piece string and something else and told to make a short story.the other was what's happening with sequencing cards that were "weird"(her words- fisherman with cat nicks fish,pelican eats it etc).she also was slightly perplexed asked to show how washes her face.they had a bar of soap which threw her a bit.she realised as recounted story to me forgot to dry her face...
I'd said multiple times she has quite a static face and in the rejoin chat she made eye contact and whilst blushed dark red did speak a few times,with idiom..this is NOT the norm for her.we shall have to wait 2-3 weeks for a decision

Zoo I am glad the assessment went well. The ADOS is a strange one, you will be surprised what they pick up. Reassure DD it doesn’t matter she forgot to dry her face, it’s not so much what you do but how you do it.

If I removed the junk I comfort eat my diet is healthy, and if I could cut out the junk I know I would lose weight. Until now comfort eating always wins out, but I need to get on top of it.

I’m not sure what is going on with DS1. He is lethargic, complaining of pain everywhere, lung function is down but not drastically and blood sugars are all over the place. At the end of last week wes swabbed for viral infections, a sputum sample sent off, bloods taken and he started treatment dose of his antibiotics. The swab didn’t show any viral infections, sputum sample hasn’t shown anything new, and bloods weren’t too bad. We repeated the tests and added some extras in yesterday so waiting for the results of those.

Time you really should apply for an EHCNA. DS’s needs aren’t currently being met otherwise there wouldn’t be school refusal. It is likely to be can’t rather than won’t engage, so the provision needs adapting to enable DS to get to a place where he can engage. An EHCNA can provide much more than any school can at SEN Support level e.g. OT, SALT, MH therapies. I would also push for alternative provision as well as school if DS can’t attend full time.

One of the first recommendations sleep clinics make is to improve sleep hygiene, including limiting/removing screens late evening and overnight. If you are going to limit screen time this is where I would start. There would still be time for DS to decompress/self regulate and communicate with friends.

Thank you bounce I've just been doing some reading around the EHC request process for my area (that's the same thing I'm assuming). I will get the ball rolling, do I need to let school know? He's on the SEN register due to anxiety which we had to push for back in year 5 I think....

Completely agree with you re the sleep hygiene, it's a battle I'm not looking forward to having but I think needs to be addressed.

Time also read about EHCNAs (yes it’s the same thing) on IPSEA and SOSSEN’s websites as the process is the same everywhere (it is governed by law) and some LAs like to make up their own unlawful policies. I would let the school know, but only as a courtesy, don’t let them put you off.

My PP should have said “an EHCP can provide…” rather than EHCNA, apologies. The EHCNA is the initial step.

Thank you bounce

I'm sorry DS isn't well bounce, I hope he improves soon. It must be worrying for you.
I am also queen of comfort eating and I'm trying to quash it but it's cheap, takes no time and makes me feel good until I realise how overweight I've become!

Pleased ASC assessment appointment went well zoo. I found them difficult when I did parent part for my DDs - overthinking responses etc. I hope you get the results soon.
I've been told similar by DDs CAMHS CBT therapist in that if she's not actively ready and able to engage they will stop sessions. It's frustrating.

DD had mixed week didn't manage art but did maths.
I've just heard that she has been awarded a blue badge- applied months ago when I heard you can get one for MH and I had trouble coaxing her out of the car.
However she's improving now and I dont want her to feel disabled iyswim, so have mixed feelings about using it , still it's there of we need it.

Dd19, recently diagnosed with autism and she probably has afrid- has issues eating anyway. has asked me about applying for PIP- she knows her younger sister has DLA and also has a friend receiving PIP. So thinking about that but not sure if she'd get it and it sounds stressful process.
Has anyone on here gone through PIP process for Autism?

Hope you all have a relaxing weekend

Runner I understand why you feel as you do about the blue badge, but you shouldn’t. It will help DD. DS1 and DS3 both have blue badges.

It is worth DD2, or you as appointee on her behalf, applying for PIP. For a small charge the benefits and work website is helpful. Also this guide - not my LA but it’s a useful resource, the best one I’ve seen by an LA. DD2 doesn’t receive PIP now as she copes very well with her ASD these days, but did 16-19 and I have helped others successfully apply.

Thank you bounce, that's a really helpful guide and link. DD2 isn't really known to professionals in the same way as her younger sister- just known to GP and has autism report, no medication, although we are thinking about that.
Just wondered if she would need more medical evidence.

I know you are right about blue badge. Just have mixed feelings about it.

Runner the ASD report and information from the GP may be enough. For example, ask for a copy of the GP notes from when you discussed DD2’s eating difficulties.

Hope you have all had a good weekend. We have had a quiet one. DS1 is still unwell.

I do hope D's turns a corner very soon bounce you must be exhausted by the additional workload this causes.sending hugs X.

Dd2 has more mock. Levels this week,and IBS has royally kicked off and anxiety is peaking Tuesday will probably be a flash point as she has two that day.german politics of ww2 (struggles understand the content)and poems for eng lit(should've learnt 16 poems- confidently knows 4).Thursday sociology exam is anothe tough one on topic not confident over the following week they're daily culminating on the Friday with 21/2 hour russian history.sge has time out card,but in main hall.

She has initial ASD/ADHD assessment contact with adult services booked via teams on 22 Feb.

DS has become very argumentative,rude and short tempered(not usually any of the above so quite a shock to the system)he's unsettled by school I think.hes to help rejig the double decker bus library from the main younger years site(will be assessed on it,so think it's a kind of library AQA) he's worried will be actually working younger kids and how go get to other site etc,plus aware they're shifting his timetable from a LOT self study towards interaction with others and he's not impressed,although I do believe this is critically important.

Lil zoo has had tummyache on and off all weekend,very bad last night.think a combo of lots fibre(had a lot hummus/pop orn etc) mixed with laxido and I do wonder correlation with ASD assessment anxiety?suspect a battle over school today,if that's case I'm unlikely to win...

Their dad bought his Xmas gifts over Saturday,he has chosen to work ridiculous amount hours recently and rarely sees them.it was awkward,like a stranger in the house who trying rejig the way we do things.he left earlier than planned citing tired,see you tom then didn't show up and when dd2 text him said has headache.ds was upset,dd2 glad he wasn't here.i appreciate he has MH issues too but I cannot be coddling him like I used to as my healths crap,MH awful and the kids all spinning on their own tangent's I cannot spare the mental capacity that would require.we are ment to be together still but he's like a stranger in my home

In other news,dd2 indoor trampolines arrived and hogging space in front room,and her eBay Nikon camera which both had her flapping and vocal tics in overdrive!she was beside herself happy,rare and a beautiful thing.

Hoping this week is kind to us all!

I hope your DS improves soon Bounce , I'm sorry to hear he is still unwell. Take care of yourself.

Zoo that all sounds exhausting , I hope DDs mocks go well , fingers crossed for her ASD/ADHD assessment.
Really pleased she loves the trampoline and camera.
I hope changes to DSs timetable works out OK in the end, change is unsettling and more interaction with others is probably stressful and tiring.
Did lilzoo make school? Hopefully you wont have to wait long for ASD assessment results.
You can't carry your exs MH on top of everything else. I'm sorry visit was difficult.

I've just spent hours phoning DLA and home to school transport.
DLA sorted although was on hold for an hour! Home to school transport just can't get through to anyone who knows any answers, was just told to email in again....

Hope everyone week goes OK.

runner that's frustrating but at least a little progress made.

Lil zoo didn't go in.dd2 was a NIGHTMARE ranting and snapping allorning,exam didn't go great.yom has German politics ww2 and knows cannot get info in and has had accept go fail that,very stressed.im exhausted by it all.

DS went to the double decker bus at power kids site today to start work organising the library.he put negative spin on it(as with everything) but think he quite enjoyed it tbh

Please can I join. Two school refusers now. one was bad enough.

One in sixth form. Trying but has geniune gastritis pain that flares with stress and anxiety.

Other started GCSEs. Ok but has bad days. Feeling sick panicky. Has attendance of 88 percent generally. 😢😢😢

Im so sad for my lovely kids.

Looking at getting a psychiatrist for dd to assess ADD. She has had proper quality therapy over a year now. Think she may need AD.

Ds a therapist

Welcome HeBeaverandSheBeaver. Are DC receiving any support at school? Do DC have EHCPs and are the LA providing alternative provision for DC2?

Runner I would email the Director of Children’s Services if you aren’t getting anywhere with the transport team.

Zoo, I’m pleased the indoor trampoline and camera made DD2 happy, I hope they help her self regulate too. Good news you have a date to begin the ASD and ADHD assessments - do you suspect ADHD as well as ASD? I hope today’s mocks go better than expected. Why aren’t the school putting other access arrangements in place as well as allowing rest breaks? With DS only being at school less than a term he is still settling in, there is bound to be bumps. I hope you got DD3 in today.

As much as DC’s DF has MH difficulties he also needs to realise he has 3 DC with additional needs who require him to pull his socks up.

We’re waiting for the specialist nurse to visit.