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!

You haven’t failed her Tiktok, that is the MH difficulties and lack of insight talking.

She is sorry now. But that's almost worse. I just feel so helpless, but I've been in contact with 12 different organisations/specialists this month alone. I have a job, but this is a job in itself.

I agree with @1twirlforward2back it's the MH talking.you are doing all you can @TikTokCat
@sweetkitty that sounds very hard at the moment.

DD has completely crashed and burned.the fallout after was epic.she exhausted herself "being ok" and has been impossible with attitude and temperament to the point Words Have Been Said(along the lines of wind your neck in,don't speak to me like that!)
She's refused to do chores and catch up outstanding school work,declaring its "all too much" and been very demanding she's also tearful her friends are off to uni/have jobs etc and frustrated she's not in a similar place

She's arranging to go to a local historical building (900 years including nuns,wealthy family etc) and also has old stables,a lake and walled gardens which are open to the public at all times,but the actual building we've never entered so she's really excited.sges meet time2talk counsellor there(it's 45 minute walk away,so not far)and in town so not like she's pounding country lanes etc to reach it.

DS is Not Coping with the heat,and tbh me neither.its relentless and the nights are hideous.roll on autumn!

Tiktok the admin is a full time job itself, isn’t it?

I am glad today has been cooler. DS1 doesn’t cope well with the heat. We are going to get an air conditioning unit for next year.

Hello everyone, just catching up. I have written a long post and it's failed to post twice now, once mumsnet/ Internet crashed. Then my phone decided to do an update! Lost the will!!

We have just returned from holiday. Dd did really well, came out with us every day, helped it was a very familiar holiday place , had some wobbles but on the whole she did amazing. Almost " normal" iyswim. Back to earth with a bump today. Forgot how bad her room is atm and now with a overspilling suitcase of holiday clothes it's even worse, I literally can't fully open her bedroom door. She doesn't want me to help or touch anything.
Have today off before going back to work tomorrow, feeling overwhelmed about everything, just have too many demands and things to juggle.

Will try and respond to pp later as I typed long reply and then lost it!
But sorry things have been so hard @tiktokcat and @sweetkitty.
Hello @folly115.
Hope DDs trip to historic house went well zoo.

Pressing post and hope it works this time

6 months since dd actually self harmed so she is proud of herself. Planned to bake a cake with her but reality hasn't quite met her expectation.
Her sleep is all over the place and she isn't waking until after lunch most days, then can't sleep at night.
She is refusing to see camhs at all now. I need to find private psychiatrist and Psychologist but it just isn't that easy. Sigh.

@TikTokCat 6 moths without self harm is something to celebrate, shes done amazing. But Im sorry everything else is so difficult, looking after a teen with MH problems is like a full time job on its own, its exhausting navigating the system. I hope you find a psychiatrist and psychologist who DD can engage with. Having the right people is crucial but I know how frustrating it is, i spent a lot of time and energy finding an OT for my daughter, found an OT who specialised in ASC and anxiety, who was highly recommended and only lived 5 mins away, waited 5 months for an appointment but annoyingly DD just didnt click with her, we limped on for a few sessions but once DD has decided she doesnt like someone there is no going back from it so we've given up and now back to square one:(
Not waking up until midday is normal for a teen so you are fighting biology as well as anxiety. TBH if shes not at school I wouldnt worry too much as long as shes up by lunchtime and isnt awake all night, so might need tweaking slightly but sleeping patterns like that is very common for teens with anxiety and depression and of course if you are working its even harder to shift the pattern.

Thank-you @runnerduck34
Everything you say makes sense and makes me feel a bit better.

Cantonet good luck to DS today. I hope he gets what he needs.

Runner is it a sensory OT you are looking for?

Tiktok if you are struggling to find a psychiatrist and CP yourself have you considered approaching The Owl Centre? I haven’t had any personal experience of them, but I know others on the SN board have used them.

Thank you so much @1twirlforward2back. It was my ds1 who got his A level results today & dd2 who did As's. Ds2 is next week for Gcse's. I mainly discuss ds2 on this thread as he's the one with MH issues.
But the others have suffered short term crisis as well.
But ds1 has ADHD & dyslexia & got into his first choice uni. so I'm thrilled. DD 2 has ADHD & got all A's in her As levels after an incredibly tough year last year.
We just need to get through his GCSE results next week 😟

That's really good news @TikTokCat .
DS here is still occasionally self harming when stressed.

Congratulations Cantonet.

So sorry I have been a bit quiet we have been away for a week but thank you for your kind welcome.

DD's job was going ok and although she was still very very anxious she managed 3 shifts the week before last , she felt very sick and didn't eat anything before any of her shifts but came home proud saying she had done it.

She was sick yesterday before her shift - the anxiety was obviously worse because she hasn't been there for a week.

So to cut a long story short before any thing she has to do out the house without me or her dad she spends a day worrying about so with work and social events and soon a new college or 6th form she literally spends most of the week scared, feeling sick and not eating.

My DH says maybe we should just give up now and leave her be she is so happy in her room watching tik tok and speaking to friends over social media. She has a massive appetite (maybe too much!!) when she is in her own house. She laughs he jokes and is fun to be around it is when she has to be out the house without us that she changes. If we visit friends or family she is so happy and confident but if we suggested she go alone she would become very anxious and would worry for days.

She has beta blockers which she had when she had exam anxiety so she has been living on these and I think they have helped a bit.

I got her to every single exam although she was sick, to school every day bar 1 in year 11 , I have made her make plans and stick to plans with friends and only gone to pick her up once when she wanted to come home the other times I made her stick it out for more than a few hours and I really encouraged her to get this job. The thing with the job is she says she doesn't really go out (only because I make her) so she doesn't need the money.

It is making our family life in general hard to manage now so I just think is it easier to just let her stay in all the time where she is so happy. She has basically said she is fine going out with us but she isn't the type of girl that is able to work and she isn't interested in going out with friends.

On holiday she had a good time but was stuck to me all the time she wouldn't make friends. Her 14 yr old brother was off with his mates and she just stayed with me and my DH all the time. She loved the holiday but the twice she did venture off from us she felt an overwhelming fear of dread so she ended up back with us and she was quite happy. She got quite cross at one point because she said we were on a family holiday and all we wanted to do was to get rid of her!! She often uses this and says we are a family but I keep pushing her away from the family and she doesn't like it!!!

If I let her give in to the anxiety and never leave the house except with me or DH i feel it will get worse and she will never leave the house but pushing her seems to be making her feel ill nearly all the time because she worries so far in advance.

It is like a separation anxiety and when she was 1 and I went back to work we had to change nursery because she screamed solidly every time she was left and twice she made herself sick. The next nursery was alot more patient with her and although it took her a while she eventually realised I would come back and last night I was thinking this now at 16 is exactly the same as when she a year old. She is basically scared to be left!!!

I could take her back to the GP and I am going to get her to self refer to CAMHs now she is 16.

Hello, have I found my tribe?

Feeling overwhelming and anxious at the moment, have been offered AD but frightened of side effects.
Have just moved house..stressful, and not what I wanted to do but wanted to be from a rural to a more urban area as my DS didn't have his needs met. He has been out if school for 4 years! But finally diagnosed with ASD and ADHD.
I just feel exhausted, but have no one in RL to tell, so thank you.

@1twirlforward2back
Please can I pick your brains??
Been advised to apply personal budget / direct payment for DDs EHCP.
Trying to get my head round it and hoping I won't bite off more than I can chew!
If we apply for a personal budget and direct payment but then cannot source the provision can we hand it back to LA at any point? Just wondered if personal budget relieves them.of their responsibility iyswim.
We need to source a new OT for sensory integration and executive functioning and haven't found one yet. From previous enquiries they all seem to charge roughly the same so can make a stab at budget, but not sure if LA will approve a budget unless we can show we have someone to do it??
I know LA has struggled to recruit OTs, so not sure if they are in better position to source it than us. And due to previous experience we need to make sure it's a good fit.
Do you know if personal budgets can include mileage/ travel and if so do I need to ask for a specific quantifiable budget pot or just submit ad hoc expenses as they arise?
Can we have an element of personal budget for materials that would usually be provided by school? Texts books, art supplies etc. We can buy these but just wondered if you could get an allowance under personal budget for it??
If you ( or anyone else ) has any experience id be really grateful .

Welcome @ononanotherday
I hope you've found your tribe with us!
My DD has been pretty much out of school for 3 years. Finding the right provision is tough and caring for a DC with MH/ SEN is draining. Does DS have an EHCP? I hope you enjoy living in the new area and your AD settle and start to help.

Thank you, sadly DS was refused an EHCP first time due to not enough evidence. Since diagnosis he was seen and refused again! As in the words of EP he is very bright and with help should do OK...but he can't access education. Hence the move! I will attempt to take AD's and start the fight all over.

Welcome onanotherday, although I’m sorry you have a need to join us. You can be academically able and have an EHCP, DS1&DS3 are academically able and have EHCPs. Did you appeal the refusal - was it a refusal to assess or refusal to issue? The majority of appeals are upheld. Separately, the LA should be providing medical needs tuition under s.19 of the Education Act 1996 if DS cannot attend school full time.

Folly you have to find the balance between pushing enough and pushing too much, and the signs in DD that you have reached the tipping point. Perhaps work is too much right now, but e.g. a walk would be manageable.


Runner A personal budget is the overall notional budget necessary to deliver the provision. Direct payments are one way the PB can be delivered, you don’t have to have DPs for all the provision. The other ways a PB can be funded are the LA controlling funds, a third party arrangement, or a mixture. You can tell the LA you no longer wish to receive DPs and want them to arrange provision. Obviously, provision won’t be in place immediately though.

Depending on when you enquired the previous OT prices may be out of date, most seem to have raised prices. For a good SIOT who is an advanced practitioner (which is what you want) you are looking around £150ph and ‘normal’ OT around £100ph. You are more likely to find a good SIOT who is a good fit yourself. You also need planning/review/report writing/meeting time and travel time/mileage if they come to you. If you do go down sourcing someone and want suggestions I’m happy to have a think depending on how far you are willing to travel/the area you’re willing to/can pay travel within.

A personal budget can include mileage/transport. Sometimes this is via the personal budget for education and sometimes it’s funded separately via a personal transport budget. You would want transport specified if it’s e.g. a taxi (would DD also need an escort?) or a specified ppm if it is mileage.

A budget for sundries, resources, trips out etc. can be provided. Such provision should be in F as well as J. DS1 has a monthly budget for resources, activities/trips out and sundries. This covers things like stationery, paper, textbooks, educational resources, science equipment, trips out and life skills resources with the OT.

@folly115
That does sound very hard for your DD, and having an anxious child impacts the whole family and puts a strain on parents too.
DD did so well going to school every day and to sit her exams, that's a massive achievement with such high anxiety. Fingers crossed for the results.
I would definitely go back to GP and do self referral to camhs - which takes ages, she might need support, , lots of questionnaires going to and fro, it's very longwinded and then there's a wait for help. Some GPs will prescribe ADs/ SSRIs to 16 year olds so this may be worth considering as it can help anxiety. Recommended practice is for only child psychiatrist to prescribe Ads but GPs sometimes will do so, depends on GP, a bit hit and miss. It can be frustratingly difficult to get help.
From your pp it sounds like there's a genetic link, do you think there's a possibility of autism?
Its a fine line between encouraging activities and pushing too far. Push too hard and it will backfire and often it's a case of one step forward two steps back. But I do understand your fear of her world shrinking. Its a tightrope. Just encourage small steps.
A job may be too much right now, particularly as she is also starting new college so lots of changes.
If she struggles at college/ 6th form it's worth considering applying for an EHCP to get her extra support.
It's difficult comparing DC to others their age and having to adjust our expectations but their MH has to come first. If she's happier spending time with you as family I would accept that, its good she's happy at home. Does she have friends she meets up with ?

Thank @1twirlforward2back 😊
Yes please for recommendations in Kent ( we are East Kent)
DDs SALT is in East Sussex. She's excellent and DD really like her and engages well but it takes soo long to drive there. Satnav says 75.mins but with traffic it's usually 90 mins and really it's too far to be practicable. But she shouldn't need as many SALT sessions so I'm pushing through and taking her on my day off as it's such a good fit. OT is likely to be a much longer process so not keen to commit to such a long journey long term if I can avoid it!

Is the SALT HP? Will they travel to you?

Abbie Hancock and Emma Mocrei are in Kent. I don’t know much about either I’m afraid.

If you don’t find anyone closer Jenny Carey is in East Sussex. Vicky Ruffle is in West Sussex, but I think she will do home visits. Ashleigh Dick and Louise Williams are also W. Sussex/Surrey area and are well thought of.

Into London is probably too far, but there’s several there including Aniesa Blore, Diana Pierags and Moyna Talcer who are excellent.

I will keep thinking as I’m sure there are others closer to you.

Thank you, yes we appealed but sadly he has just turned 19. Now we have moved LA's I am going to try again. He wants to try the local college so hopefully they will help.

Runner I don’t know whether it’s any closer for you or just as far but in the opposite direction but Lara Breaker-Rolfe has a clinic in Essex.

onanotherday Apologies, I thought DS was younger. In that case the education via the Education Act won’t apply as he is no longer compulsory school age. As DS is already 19, without an EHCP he won’t be eligible for funding for a new college course. Students are only eligible for funding if they are 16, 17 or 18 on 31st August prior to starting the course in September. If he was already on the course and turned 19 that would be different. Here are the funding guidelines.

Was the appeal refusal to assess or refusal to issue? Did you have independent assessments and/or any help with the appeal? Now DS is over 18 if you need to appeal again if he will be eligible for Legal Aid in his own right if he meets the criteria.

Thank you so much twirl😊
I really appreciate your time and trouble . I will investigate your recommendations

Gosh,you lot have been busy since I last posted!
Apologies,my phone hasn't been alerting me to new messages here and I'm still so exhausted I've let many things slide lately<ignores state of the house>
@onanotherday welcome.
@Cantonet good luck for GCSE results tomorrow🍀🍀🍀🍀.
I can't scroll back well on my phone so apologies<again>for the short personals.
How's everyone doing as the back to school run up begins?

DS has his results tomorrow,I had email head Sen unit stating no idea how we get results try<insert staff of MS email address>try here😤😤luckily she was amenable- she said has to sort those in school collecting but will email D's his after they're all done<after lunch>luckily his placement next year isn't grade dependant!talking new school year no news on funded taxi yet and getting hold anyone is,as always in our LA,night on impossible.meanwhile D's circles the sun with the uncertainty!
Dd2 has been doing LOADS of things.post Brighton,she has visited a local stately home by herself which involve 20 minute bus trip to somewhere never been before.she needed continuous phone support<via text>but took a pack lunch and was gone 9.30-4.took loads photos,made friends with a cat there and was chuffed she did it.tends to have very high anxiety couple days after as "holds in" anxiety whilst doing things/around strangers(?)

We visited our local uni Saturday and she's interested in the history course for sept 2023.rheres a possibility could stay in uni accomodation 2nd or 3rd year,and there a student "village" I didn't know existed 10 minutes from our home(the uni was over multiple campus but moved to one spot pre covid,one old sites is now housing,but I didn't know has a student village within it)that has free bus services to uni(which is about 20 minutes on a bus away).it's been hard her cohort now doing off to uni things together(for newbies DD resat year 12 and thus is now alone for 13 as they have left and she was unable to find a new tribe in her year)
.
Yesterday she broke every rule she's ever had...she's been talking a friend online(fan group) for 3 years.we live in East Midlands/east of england.said friend is in Carlisle.she agreed they wanted to meet.saud friend has POTS and us a little younger (nearly 17) and her mum refused allow them to meet at a halfway point.dd decided to go for it and go to CARLISLE ALONE.granted she had no idea how far that was when booked it,only inkling was the length train trip.it was 31/2 hours there,with one change at nearby station.trip back was 2 changes 41/2 hours.she had bad IBS night before left and I got about 2hours sleep as she slept on me and was up at 4 to leave at 5 to be accompany to station for 6.we had constant text contact on way.i did,as for Brighton,train schedule with changes,all the stations to tick off and little facts about each place.it was hard but she got there!
Did bowling with her friend,visited a mcvities factory shop and saw the cathedral and a nice park.bit charity shop shopping.by 3pm her social battery was on the way out and was get overwhelmed but made it through the day and friend was very happy they'd had a chance to be together.they got on like a house on fire❤️.trip back wasn't as good.lots panic surges,bad ones.wibbled a bit at unclear boards when changed at Preston then train got to Wolverhampton ten minutes early but then left 12 minutes late,missing connection at Birmingham international.she freaked so bad,then cancelled next train..luckily her big sister who has train apps,regular train user was able to locate a train home and drove me to meet her.shoukd have been back 915pm,was gone 10 and there were lots tears as I greeted her on the platform
Today she's been like a silent shell,huge panic surges and withdrawn.i regret letting her go,but haven't Said so.
Popped out church and signed up to do volunteer work in community cafe that's restarting list covud.dd worked there 4 years previously waiting tables and I help in kitchen for most of them.lil zoo has agreed man the coffee machine,D's will help wash up/clear tables.i think will be good for them.
Tomorrow we need to go to town and but D's shoes(difficult as he doesn't recognise shoes are too small etc) and get the girls some bits.dd needs to go to the library about some history coursework also(our local library was closed as part council cuts just as covid started).D's hates town so huge deal.
Curiously DD is start panic about managing school.her arguement is big trips are one off with downtime each side.day to say stress is cumulative and overwhelming socially too..I applied pip pre trip now I don't know what to do.shes deffo not better,these trips are HUGE but day to day she's still in a constant pickle.thoughts on this @1twirlforward2back ?

Sorry for the essay!