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

Tiktok that’s brilliant. Long may it continue.

Runner A consent order is when you and the LA settle before the hearing. Together you draw up an agreement, it is sent to SENDIST and agree (or not) to issue a consent order. LAs often try to get parents to withdraw the appeal before a consent order is issued.

An EHCP won’t necessarily state EOTAS/C (or EOTISC - which seems to be being used more and more which some are concerned about as one could argue legally there is a difference between in school and at school) but the provision of the bespoke package should be in F and I should be blank.

I posted too soon as suicidal ideation has hit again. Period due so definitely hormonal induced. I will be contacting gp tomorrow to see if we can get her on the pill.

tiktok I hope the GP was helpful, you and DD can’t keep on as you are.

Thanks twirl😊

I'm sorry it's tough atm tiktokcat, hope GP can help at least you have made the link and fingers crossed the pill works.

Gp still hasn't got back to me :/

Period started today and mood instantly lifted so I am pretty sure it is pmdd

Taf meeting scheduled for Monday. Youth worker wants us to invite school but likely she won't go back so a bit torn. Think I will need to tell them we plan to leave before we have that meeting.

I hope GP has got back to you tiktokcat.
I sympathise re meeting sometimes it feels overwhelming having decide the best course of action.
LA after failing to name a school last week, submitted no further final evidence this week, tribunal in 3 weeks and they have just emailed to say they are considering the evidence ( fgs what have they been doing for the past year!) And will "revert " their response "soon".
I've gone beyond feeling hopeful of any resolution just feel.so stressed by it all. DD who did like the idea of eotas now says she would rather be in a school! the trouble is there isn't one that can meet her needs and tbh I'm not sure she'd really manage it.
Just not coping very well atm and feel overwhelmed.
Did the sossen webinair and it was really really helpful. Thank you so much twirl for signposting.
Now thinking about adding personal budget for tuition to working document, the LA have finally returned it to us after 2 months but made no changes so its exactly as it was when I sent it to them! If we had a personal budget we would then have a bit of control and choice but it also feels like hard work.
Anyone here have any experience or advice on personal budgets ??
Zoo, hope you are OK

Runner I am glad SOSSEN’s webinar was helpful.

Do you think DD is saying she prefers the idea of a school because that is what she knows, she doesn’t know EOTAS. Check the WD is actually unaltered, even if hasn’t got anything altered in the way it should be some LAs try to sneak changes in without using the format they should.

You can have a personal budget in different ways.

1. a notional budget whereby the LA or school control the funds and commission support directly.
2. Direct payments - where you are given monies to organise provision yourself.
3. A third party arrangement where a third party are given the funds to manage on your behalf.
4. A mixture of the above.

There are pros and cons of each way. The PB should be set out in section J but it is incredibly important all provision is still specified and quantified in F - you can’t appeal section J. DS1 has a PB for his EOTAS and we have a mixture of the first two.

Runner Tiktok if you haven’t already, you need to inform/remind SENDIST DD is out of education. There will be more adjournments over the coming months due to lack of court time and SENDIST are prioritising phase transfers and those out of education, IPSEA are recommending you highlight to them if it applies to you.

Thanks twirl, we have received our notification of hearing letter with instructions so I am now hopeful it wont be adjourned.

Runner not to put a dampener on things, but some cases are being adjourned within a week of the hearing. SENDIST is a mess at the moment, the system is broken.

Morning everyone.sorry for the prolonged MIA.covid wiped me out!
Dd2 had breakdown and had 2weeks on calming meds.shes now started sertraline again.ds viewed possible school on friday.we love the vibe there.
They ment be ringing today to discuss potential options.hes disappointed can't do English but we are thinking GCSE history,poss geography and then a mix of more therapeutic subjects like ceramics,animal care,woodwork and art.
Lil zoo still having tummy issues.schiol want her back in today as she's only done 2days this term.the initial agreement was once on meds and having predictably timed bowel movements to come back in but we are now in 3senna a day and still not regular timing so they're antsy.shes in lots pain,bloated and getting quite miserable.another meet nurse Wednesday to discuss poss going up to max dose (4).I personally don't think it's agreeing with her body,and am not sending her today if she feels uncomfortably like needs to go (but can't)

Twirl, that sounds depressing but not surprising, our hearing has been postponed twice already, when I started this process I thought tribunal would help us but in fact they have hindered us almost as much as the LA . It is depressing.
As you can see it early hours ( need to be up in 4 hours for work:( )and I'm lying here awake unable to sleep for worry,can't stop my mind whirling. sent working document back to LA and i know it won't be returned before tribunal,last time they kept it two months before returning it to us with no changes whatsoever. Hopefully its good enough but now I'm worrying about practicalities of eotas and how much more strain it will put on me and how DD really wants friends.
Hello zoo lovely to hear from you, I've been thinking of you I hope you feel better.
Fingers crossed for DS school, I hope setraline helps DD and lilzoo improves soon and can go back to school soon. Sounds very stressful and upsetting for her.

Hey runner - we are living the same life right now...

Zoo - take care of yourself. You're going through so much.

tiktok/runner I hope you both eventually got some sleep.its such a frustrating process,which it really shouldn't be- wanting an appropriate school for your child isn't asking for the earth.

We "got the call".they've accepted D's and will inform LA can meet need.ive now listed them as chosen school will ring today to find out how long this will now take given I had told them my intentional place,but needed to be sure they could accept him before naming it(last year we had a set to over naming a school which then flatly refused saying couldn't take him despite literally being around corner from my house).

TAF meet today.
ds has eng lit GCSE tomorrow.fretting himself silly and current school aren't supporting his revision with anything but you tube.i can't wait get him out of there.what a waste of year 11 it's been

Tiktokcat, thank you for your solidarity! makes me feel I am not alone. I hope it all works out in the end for both our DCs. Its an awful process, so stressful for us and unfair on our DCs.

Fantastic news re DS school zoo.
I hope LA agree to it swiftly and without a fight.
Finding a school is so so difficult.

Zoo I hope you are resting and taking care of yourself whilst recovering. Hope the TAF goes well.

It is good news the school has offered a place. Is DS sitting both Lit and Lang this year? If it’s only lit is the school offering language next year? Email the Director of Children’s services reminding them the EHCP should have been amended by 31st March (don’t mention you didn’t know what school was your preference at that point). Give them a deadline of 5 working days otherwise you will be forced to begin Judicial Review proceedings as they are in breach of the statutory timescales and frustrating your right of appeal.

Is DD3 receiving medical needs tuition and have you thought about applying for an EHCNA for her?

tiktok runner I hope you both managed to sleep after you posted.

Runner if the hearing is adjourned again you can object. LAs are notorious for delays with the WD. There should be a timescale for engaging with them.

Hi can I join? 17yo DD1 with crippling anxiety (I remember asking MN if my waters had actually broken how time flies) anyway she’s not been in school this year and obviously no exams sat. Stays in her room most of the time, doesn’t go out with friends etc. All the GP has done is give her propranolol which I don’t think is helping. She’s had 2 CAHMs visits but as she turns 18 in 2 months that will stop. I’m sick with worry, fear and guilt.

kitty welcome.there should be a transition period from child to adult services if there are any concerns regarding self harm/addictive behaviours/at risk.otherwise my understanding was for my DD(possibly different in other counties) it's pretty much g.p care only
Has she not been offered any therapy/anti depressants as if she's isolating highly likely depressed also?
What does she do all day(not in a rude way,I'm curious how she spends her time)
Have you other children to care for/any support yourself(friends/family as caring for an anxious child is very hard work emotionally)

Twirl dd3 has had full access to online content,meaning she gains most of her lessons - there are a couple that don't always pop it up(EP/sometimes french).we had a review with continence nurse yesterday and she feels there's moderately low risk of accidental soiling (goes every couple days roughly 18&20 hours after taking 3 senna)and she should restart reduced hours,which she did yesterday(in school til 11,doing double science).she saw head of year after this and was asked what lessons she has today she reeled off them all(should be in all day from 11 if on her timetable as currently only doing subjects she is taking next year)they asked her to go see them at lunch and if she's had enough can go home or feeling able to do pm also.sjes now convinced has to stay all day.last night crippling pain and a headache.withdrawn and miserable.
In other news we had a call from camhs offering her a 6week goal focussed therapy by external source they are working with to reduce wait times.
The trainee psychologist I spoke to said initially it was this,then when I query it(as I was writing down what she said) she said it's a type assessment to speed up care.i wasn't convinced as she's on list for additional assessments so I asked where she was on said wait list.no1 has taken up the external care offer so she's moving into 1st place,awaiting available clinician.i point out 1 1/2 years waiting proper care I think we can wait a little longer given she's on list for ASD assessment and will likely shut down a stranger trying to do goal based work they will say not engaging and discharge!fingers X it's not much longer now as she goes into year 10 sept and we really need progress to help her keep up volume of work GCSE will bring.shes not having any external contact with other students anymore and this isn't helping her feel being onsite is fun/worthwhile plus outside school hours she lays in bed watching films/on phone mostly.
She heard back yesterday she cannot do higher science as got 55 marks which wasn't enough on test papers she did on only two days attended this term in person.she was I don't care it's no big deal but her irritable replies and demeanor show she's actually crushed as she studied very hard.i guess she missed some lessons and wasn't up to speed to be able to secure a high enough score for that to happen

Dd2 had a bad day yesterday.i can tell now I'd her clothes"don't feel right" she gets herself in utter state at school can't focus on anything but her discomfort of clothing and then has very high panic levels.she came home in frees and didn't return for afternoon sessions but did crack out a stack revision notes ahead mock a levels in a few weeks so I'm taking that a huge win.

Yes D's is doing Lang and lit(school were are you sure you want to try lit? And have not been at all helpful trying to support it,all u tube stuff.barely any Lang work as mocks he got 8/9 without virtually any input previous to that and he's predicted "probably" scrape a pass in lit too.yesterday they did "jubilee stuff" and he was very upset on return.having spent time with head of ms and senco and had to join in Uno etc other students he was exhausted,tearful and irritable.i text school mobile asking anything happened.nipe.he was amazing and chatted staff which was a pleasure and played nice all the kids.his version of events was new/different head he didn't like and hated playing with the others.head unit said he mentioned twice they'll soon forget him and thinks he's scared next steps.his reply to that was can't wait get out that madhouse and start a real education so I'm not so sure on that one!!he has half-term next week then eng lit on the Wednesday,Lang on Friday then 2weeks with nothing to do before he can officially leave.theyre talking about maybe a project or doing some of his social stuff off EHCP,yeh good luck convincing him to go in for that as in his mind schools for gaining education...

<Sorry for the essay there!>

sweetkitty welcome. Will CAMHS be referring DD to adult services? If DD doesn’t go out often does DD take vit D supplements? Does DD have an EHCP?

Zoo I hope today was OK for DD3 and you hear soon about assessment. You could still apply for an EHCNA. Why are the school deciding now whether pupils sit higher or foundation? Usually it’s decided nearer the time.

DS could redo Lit next year if he doesn’t do as well as he would like. It might not be the same exam board/literature but it would enable him to continue with English since he enjoys it. Could DS be convinced to give the other stuff a go with education is about more than academics which is why it is in the education part of the EHCP? It wouldn’t work for DS1 but would with DS3 even if he isn’t happy about it.

Hi I’ll try and answer your questions. DD1 what she does all day - mostly sleeps and watches Netflix she has turned night into day stays up all night and sleeps all day. She’s almost 18 so we can’t force her to do anything, plus I’m also terrified of her hurting herself.

I have 3 other DC and work FT as an ASN teacher. My DH WFH and they just wind each other up. He really doesn’t understand her anxiety. I do as I’ve suffered from it for years and have came to the conclusion that I will be on ADs for life. I want DD1 to go on ADs as well as your correct she is depressed too but they’ve refused until she’s 18.

No ECHP as were in Scotland, her school were not supportive really. So now she’s officially left, am hoping she can make it to college but she is too anxious even to put in the application form.

As you are in Scotland have you spoken to Enquire?

Why won’t CAMHS prescribe ADs? The majority of GPs won’t prescribe ADs to children and young people due to NICE guidelines but CAMHS certainly can.

I would try to move DD1’s sleeping pattern as sleeping all day and being awake at night will be exacerbating her anxiety and depression. Not easy, but will help. It is one of the first things CAMHS or adult services would advise. If DD struggles sleeping you could ask about melatonin. I would also ask for bloods including VitD and B12.

If you are ever worried DD1 is at risk take her to A&E.

How is everyone? Just checking in.
This half term has snuck up on me as DD not in school so half term is meaningless which makes sad. However she is managing to catch up with friends this week so that's a positive.

Welcome @sweetkitty
That sounds very difficult, medication has really helped my DD, was hit and miss finding the right one but its now really helping, I would push camhs to prescribe, unfortunately we had to have a private psychiatrist appointment to get a prescription as long wait for camhs and then they wouldn't refer her to child psychiatrist , honestly they are hopeless, maybe things are easier once over 18 as GP can then prescribe .
My DD (15) also became a night owl, I think.night time became a safe place as no one expected anything of her at 3am so easier to be awake then than at 11 am when someone might expect her to do something or go out. With melatonin we slowly adjusted her sleep pattern but she was a bit resistant as she didn't see it as a problem.
If your DD has finished Alevels or equivalent, perhaps a gap year to help her MH might not be a disaster, she can pick.up a college course later.
my DD school refused and having a few months off school, like you would for work, definitely helped her MH.
What does DD want to do? Can she apply to college and defer a year if needed?
It's very difficult when not all family members understand anxiety, particularly if its dad, I think there is sometimes a bit of denial .it's hard to get your head round, I didnt really get it until DD was ill and I'm still learning.
Do you think it's possible she may have ASD? My DD was diagnosed at 14 after starting to avoid school/ high anxiety. Girls in particular are amazing at masking and there's a strong link between high anxiety and ASD.
It is extremely difficult caring for an anxious child, it's emotionally draining. I hope you get a little bit of time for yourself .

Zoo, I hope lilzoo is OK, moderate/low ish risk of soiling wouldn't be low enough if I was a teenage girl going to school.
I'm sorry she's disappointed in her science results but sounds like she did amazing in the circumstances.
DD2 being more sensitive to clothing when anxious rings a bell. my DD is exactly the same and clothing not being right can quickly escalate to meltdowns . I hope its all a bit calmer now.

Hope everyone gets some much needed rest and relaxation this half term

runner catching up with friends is a good sign.only dd2 has a friend.ds hasn't had a solid friendship in years and lil zoo has let her only friendship eitherkitty I second working at routine and sleep.my dd2 is 18 and I still wake her everyday at civilised hours(helps she has meds to take) and lil zoo is verging towards up most night sleep in day also gets awoken and repeat woken if tries daytime naps!

Thanks for welcome to the club we all don’t want to join 🙁
@Runnerduck34 I’ll try and answer your questions, definitely not ASD my 16yo DD2 is exactly like you described a girl who masked it for years, I’m also a SEN teacher so well clued up on ASD. DD1 is 18 next month so I’m hoping GP will prescribe her medication then, we will be going private for counselling then as adult mental health care is horrendous as you all know. The problem is she’s doing nothing that CAHMs have recommended, they said go out for a walk once a day even for 10 mins with your Mum she won’t do that. She doesn’t try to correct her sleep pattern. She had a go at her today for waking her at 9.30am as she went to sleep at 5am, she could have slept on a bit but chose to get up then.

As for school she didn’t do too great in 5th year (Scottish system) so started 6th year full of hope and it was too much for her. She didn’t go back after Xmas so has nothing to show for this year. Her plan is to be a teacher eventually but she will need her GCSE maths equivalent first. She keeps saying about doing a NHC in Early Education and Childcare at a local college but I don’t think she’s ready for it. What I don’t want to happen is for her to think it’s ok to stay in her room for a year doing nothing that’s not going to help her.

She has a big weekend coming up, she still wants to go to her prom and a concert she’s been looking forward to but I don’t know how she will get on.

As for myself, I’m burst out too 3 and a boy weeks until the holidays, I’ve a job interview this week and a tonne of work to do, who said teachers wind down in June?!!!

Hi, how is everyone? Long time no post.
We are still in the same position with my 8 year old but he's making small improvements like going out on the trampoline and having a friend over now and then.
We have a CAMHS case worker and a psychiatrist now, and are waiting for his EHCNA.
The psychiatrist has now suggested we start him on 4mg of fluoxetine but I'm so worried. I'm worried about side effects, I'm worried because he is so young, worried they won't work. I have so much going through my mind. Anyone with experience with younger kids on meds, I would really appreciate hearing from you. Thanks