Parents of anxious kids/teen support thread(part 4)

[Stilllivinginazoo]

Hi everyone
I cannot believe we are moving onto a fourth thread!
This is open to anyone looking for support or advice with a child or teen who suffers from anxiety
This is a long running thread and we have some popping in and out,some long term and some who just dip in for advice- all of these are just fine!
We understand the challenges of raising anxious children and how small wins matter(to others they're nothing special,and many are rude enough to say so!)and the sheer exhausting all consuming efforts that parenting very anxious children can entail
Only thing we ask is that others are respectful and kind.all situations are unique ,and there's no judgement allowed

Jump thank you for the advice and links and for taking the time to post. Emailed LA case worker end last week asking for copy decision letter by end of today (will follow up) and emailed one EP so far. Will contact DWP later and also look at registering with careers service. Also SAR's. Have been reading IPSEA and SOSSEN websites - so useful. Needs to write a list and could do without work today so I can concentrate on planning appeal.

Runner agree it's all about knowing what questions to ask. It all seems so disjointed and everyone says they have your child's best interests at heart but actually every organisation has it's own agenda and doesn't do a lot unless parents know what to ask for. So frustration! I hadn't heard of LIFT but gather it's not country-wide from what Jump said.

Hello Bagpus it is a great help to be able to share with others who understand and don't judge.

Jump, thank you for advice, just looked at family fund but it looks like you need to be in receipt of certain benefits or tax credits to get it.
Im a bit annoyed about medical needs tuition, I asked school about it a few months ago, search high and low for info and finally found something online and it looked to me that DD met the criteria, however both senco and pastoral manager said they have tried several times but never managed to put in a successful application for mental health ,even although it is a listed criteria, their view was yes it listed but its widely known ( within schools) that LA never give it for mental health reasons and basically school would be wasting their ( overstretched) time form filling and going through application process. If memory is correct referral has to come through school and not something I can do?
Hoping LA will agree to issue EHCP and we can fight for provision from that. We should hear within next 2 weeks.

Time for a big confession....

Lil zoo has spent 4weeks at dd1 house,refusing to come home,and not speaking at all dd2.only communication when wants some thing with me.i insisted came home Saturday as nothing was changing and I feared she would never come back
Ds has visited as dd1 has him and lil zoo fortnightly overnight and he said lil zoo was happy there,but not here

I have anxiety and OCD,it's been wobbly a while thanks to hormonesbut think biggest stumbling block is dd2

Since she was small she's absolutely done her best to be in charge.shes wasn't a naughty kid as such just needed a lot of attention and to be the centre of everything.birthdays were all about her,taking over others new toys and playing up despite my best efforts and expected royal treatment every sec of hers.couldnt take turns,loves repetition of same books.
Until 6 had no friends and play by self in sandpit at school and nursery.
All her closer friends have gone on to asd diagnosis.she hates unpredictable(scared most animals /drinks etc)she works best in 1 or 2 or gets overwhelmed by the effort of it all.spent hours as a child trampolining,or play in sand..always needed to know what was for tea as drop at school
Anyway fast forward to end year 8,start have increase anxiety which I now know was masked as D's was start to unravel with anxiety..
Totally left railroad just before covid hit under pressure if GCSE.
Since she's coasted,missed huge chunk school and failed to get on with sertraline,leaving her fearful try anything else
She's permanently over anxious,hyper vigilant for health and every twinge is agony saying eatings excruciating but still wants to eat and if unusual happens and distracted no word of it.shd won't settle at reasonable hour fighting sleep til exhausted as occasionally wakes in panic in night and this is her way to stop that.refuses stop using laptop/phone as distractions.shes 17 and any questioning of it I'm personally attack her.her moods are legendary and her need constant
Since lil zoo returned on Saturday D's and I are try to create a calmer more fun home as I recognise it's not that right now.its stressful and the anxiety is heavy in the air all the time from DD.
I've been accused ignoring DD now lil zoo back as I stop watch multiple episodes her fave showreducing it to one or two a day,one before I fall asleep at night...
We are excluding her as she don't want watch the film we choose and won't even try and join in trying to have a laugh and sit in bed sulking and sending crying messages to friends how shit her life is and how we don't care about her
Her anxiety restricts all areas and she won't medicate.she won't go anywhere and don't want me to leave her either,won't eat/wear/do virtually everything
I'm exhausted and I don't know what to do.its so obvious now lil zoo returned and there's so much tension between them as lil zoo tries find some semblance of a voice and DD trying to stamp her dominance over it
Where do I start.i feel terrible I never got to grips with it when she was small but it's always been just me manage them all time,dad doesn't help with anything but fun stuffand I've no family/friends
Da wants everyone to be happy and whilst says feels sad doesn't get time with me is willing to let dd2 take full attention as long it makes her happy
Thoughts?

Zoo you told me not to apologise for posting what was in my mind last week so the same goes for you.

It sounds really difficult and stressful for you at the moment being pulled in different directions by DC's needs. You care and are doing everything you can on you own

Bagpuss does DD get DLA? If not, apply, if DD is awarded DD at least middle rate care you can apply for carer's allowance.

Muddling your LA will have a similar specialist teaching service to LIFT, just by another name. For your LA try googling advisory teaching service and your LA. If I've got the right LA they have a phone line parents can ring.

Runner sorry, I thought you may receive tax credits. DD does meet the criteria for medical needs tuition. The SENCO is talking nonsense. The LA may try to wriggle out of providing support but parents can challenge it. You can force the LA to provide education via Judicial Review. Often the mere works as it shows you are willing to enforce DD's rights.

Your LA like schools to refer, but there is no legal requirement for them to insist on this. Write to the LA, inform them DD has been too ill to attend school since x, school refuse to refer her for medical needs tuition and the LA have a statutory duty to provide education to those unable to attend school for medical reasons, including MH needs. Give them a deadline, 5 working days is adequate, and state if they fail to meet their statutory duty you will be forced to begin Judicial Review proceedings.

Zoo I'm not surprised you are stressed! You have so much on your plate to deal with on your own. Have you had a carer's assessment?

DD2 needs to realise she may be anxious, but she can not rule the house, especially since she isn't the only one with additional needs. It doesn't help anyone, least of all her, and DD3 and DS will become resentful if she dominates the house all the time. She has to help herself. Can you put in place screen limits? I know she is 17, but it won't be helping and she has shown she can not self regulate and as a result her behaviour is negatively effecting the rest of the household. Also, if she does have ASD she will be developmentally around 2/3rds of her chronological age.

One or two episodes is still a fair amount. It's not exclusion if DD2 is given the option to join in and refuses. Nor is it fair, or helpful, if you stop going out when DD2 has the choice to go with you or stay at home.

If allowed DS1 would take and take. We could give in to one thing, but there would always be something else.

@1jumpforward2back - sorry , more questions but would SAR come from DD2 as 16 or could we send if she signs a permission letter to go with requests?

Also read that if school is an academy there is no legal right to obtain the child's educational record and parents must go down a different route but doesn't specify what). DD2's school is an academy.

Got the EHCNA refusal letter today which seems to focus around lack of evidence around how an EHCP would help DD2 in a school setting and that her the evidence we provided focuses around her mental health needs and that there is no evidence of a reintegration plan having been put in place.

Much of the focus of refusing is based on private therapist assessment and report last September (not Ed Psych) when we hoped DD2 could manage school with adjustments and the fact that she hoped to move to a different post 16 setting to do a specific course rather than A levels. Letter states that the adjustments suggested in the report would not be above what a school would normally be expected to provide through their notional funding. That was last September and school did make the adjustments but DD still couldn't cope.

She won't be getting any GCSE's and is almost housebound so the situation is very different now.

For some reason the letter indicates she is predicted 4/5 at GCSE level (number? level?) This it would seem to have come from the medical needs education and I've no idea why!

Beginning to wonder if school submitted anything to LA when requested!

DH emailed private report to LA when we were submitting evidence and called the therapist an Ed Psych in error. I spotted the mistake almost immediately and emailed case worker at the time to correct. Rejection letter is full of reference to "Ed Psych" much to my annoyance.

Not sure if I should reply to case worker and point out Ed Psych mistake or any other incorrect information (predicted GSCE's) or just safe it all for appeal?

Started the process of applying for PIP today

Hmm council have a handy form to complete online for SAR however they state

please be specific about the information required as we cannot deal with requests such as "Provide all data held about me"

DH thinks we should state that we are requesting all information gathered for EHCNA request for DD2 and the date we submitted it. I wonder if this is too narrow and specific - I want to get it right!

You can submit a SAR on DD's behalf if she gives you written authorisation. Usually 12 is the cut off for data purposes.

There are 2 ways to access information held by schools. In maintained schools parents can request a pupil's school record under The Education (Pupil Information) (England) 2005. This is quicker, but will not disclose all data just what is in the school record. This is separate to the Data Protection legislation, which applies to all schools, and should disclosure all data held. For the LA it would be a SAR anyway as the former only applies to schools.

The LA can't refuse to disclose all information held if that is what you request. Although if you do so they may try to deem it a complex request and therefore extend the timescale. Just requesting information from the EHCNA process is not enough, for a start it will not include the medical needs tuition correspondence, it is also very easy for them to classify something unrelated. From the LA I would request all information held since whenever DD's difficulties started]m, including but not limited to all personal data in relation to: communication with the school, communication with the medical needs tuition service, the EHCNA.

I wouldn't bother pointing out the EP mistake at this stage, it's unlikely to alter the LA's decision. Focus on building evidence now. The SARs should help show the school made adjustments

Are you sure DD won't be given some GCSEs? It's possible the medical needs tutors have been able to gather enough evidence.

Thank you so much Jump, I am back on the case this morning before work. Yes, unfortunately I'm sure DD will not be awarded any GCSE's - school SENCO phoned to advise me of this several weeks ago after they had completed a thorough review of all work in all subjects.

Medical needs tuition has been in one subject only, two lessons per week since Easter as it was felt DD couldn't cope with more.

Thanks @1jumpforward2back I will look into that support. I’m not sure we would be eligible as my DD goes to school at present and is fairly stable.
I don’t know if they would count on my obsessive checking as necessary care! I’ve had so many nasty shocks I just can’t relax I’m sure everyone on here feels similar.
I’m sorry I don’t have anything useful to add about school issues just so sad that as with anything child mental health families are left to fight for their child mostly alone.
Step one foot wrong with attendance and the world is interested/ child cannot make school for MH reasons and no one seems to move fast at all or offer advice.
My friend has a DS who won’t attend (waiting on ADHD diagnosis) and only after about a year did they mention online tuition that is available in key subjects.
For me I’m hoping the mood stabiliser brings the lows up a notch as those cause the most damage with self harm etc.

Well our run of good luck hasn't lasted, DD back to school refusing.
Had phone call from school yesterday, DD had put on a WhatsApp group she was going to punch someone, this was them bought to schools attention and i got a phone call yesterday. DD said it was a " joke" I think there has been a falling out between 2 of her friends and DD has got dragged into and made the punching comment that was really unkind and stupid. she had deleted whatsapp group by the time she got home so I cant see what exactly was said or context. School have said they will have to talk to her about it when she next goes in, which i understand but obviously that doesn't help me try and get her into school!
The daft thing is she has a birthday card and present for the girl she said she would punch and seems genuinely not to understand what the fuss is. She has ASC but we've never had anything this before. Not sure if she was trying to fit in, thought it was a joke ( which is what she said) or was really being mean - which is out of character.
Feeling deflated and upset.
Last week was the most time she'd spent in school for over 18 months.

Bagpuss I would think DD should be eligible. A child who has been prescribed mood stabilisers has significant mental health difficulties. You have nothing to lose by applying, I bet you do more than you realise. Have a look at the Cerebra guide.

You posted DD hasn't been diagnosed with bipolar, but do they suspect she has it? If so, since she is 14 have you been referred to the Early Intervention in psychosis service.

Has your friend applied for an EHCNA?

Runner I hope you get to the bottom of it, and it doesn't set DD back too much. It sounds typical of a situation arising from autistic social communication and social interaction difficulties.

@1jumpforward2back no I will ask my friend about the EHCNA she does seem to be getting appointments through now for various assessments so hopefully this is moving forward.
Regarding the psychosis referral there does not seem to be much issue with this area although the psychiatrist has suggested we could look at a tiny dose anti psychotic in the future if needed.
DD reporter occasional visual hallucinations but she is aware they are not real and they don’t upset her. The current medication often Settles this aspect too so he didn’t want to jump right in yet which my DD was fine with as it is the mood swings that cause the distress.
I will definitely look into it though I feel the more knowledge he better in any situation than you.
@Runnerduck34 that sounds hard for your DD they do say these daft things on what’s app and don’t realise the consequences of it being a group chat. In their mind it’s a throw away silly comment but it looks terrible written down.
I wonder if you can arrange to go in with her for the chat as support and explain how it’s setting her back?

I have had recorded delivery letter from dd2 school asking make app to go in as her attendance is 39%and she's not engaging with my tutor online

Zoo- I am so sorry, how stressful for you. That is a rubbish way for school to approach you,
Write all your concerns down before the meeting such as unpredictability of tutors etc. Is there anyone who can go to meeting with you? Some parental support groups will arrange for someone to attend the meeting with you. When DD was under early help our early help worker attended school meetings which was really helpful as they can represent you and arent as emotionally involved.
Does DD not have a timetable, 10mins notice before a lesson sounds rubbish-you need more notice than that surely, it has to be properly planned?! I cant see how that and change of tutor each time is doable for any child let alone one with anxiety and possibly other difficulties too, its like they have set it up to fail.
Can you email head of you and find out her timetable? My DD wouldnt be proactive in finding out either.
I hope she can calm down soon, try and do something relaxing, I hope meeting isnt as bad as you think and you can some productive outcomes.
If provision for DD is poor can you write to your MP or local councillor and ask for their help and support?
I know this takes energy that often we dont have when we are running on empty but they might be able to help and get results.
Good luck keep us posted

Well DS came home from school today and told me that he's been told not to go back until sept. Sent me a text even though sat right next to me! He's resitting his as levels as this year has been terrible but it's still something of a shock. I think he's shocked too. Just sitting in his bedroom in the dark which is what he does when bad things happen. I tried to talk to him but he pushed me out of his room and threw things at me and just shouted go away.

Last year attempted suicide in aug after long period at home for lockdown and now at home for ages again.

Husband is livid - says he should just leave and get job at McDonald's as will be just as bad and lazy next year - but I don't feel we can stop him trying again.

How do you all cope with your children missing school and being home all day?I struggle with trying to keep normal routine going when there is no need to get up and nothing to do. I know we could give him school work to keep him learning but he's not going to do that.

@Tisforptarmigan it's something I struggle with too.
Dd sits in her room all day, watching Tik Tok (she's 12). In a way I feel fortunate that I work full time (from home, while she's home) as I don't have the ability to keep trying to get her to do this or that or wake up or get washed. I'm on calls all day.

At some point I'm concerned my employer will say enough is enough as I've had to take every Wed and Thurs off to sit in the new provision car park while she attempts to go in. We have had progress, yesterday she let me leave for 45 mins. I was hoping today might be a half day but her period has started and it's thrown her into a tis wos.

It's even harder when they're older, you have my huge sympathies. Will he allow you to open the curtains and window at least?

I'm just losing it in the little loo.

I just want some of my life back. Every fucking second of Wednesday and Thursdays is dictated by my child. And the rest isn't only because she's shut away in her room on a screen, which is not really OK, is it!
I feel like I have no autonomy over my own life.
Nearly 3 hours since she was dressed and she still isn't ready to leave. I can't force her. She still hasn't taken her meds. And I'm anxious because she still hasn't put her socks on which takes at least another half hour of gentle tween reminding to please put on your fucking socks!!!! Grrrrrrrrr

The other 2 kids are just able to put their socks on. Might need a reminder or two but they do it. So unfair on her and on me and I'm sick of it.

Tis- why have school told him not to come in, has school term finished , have they said this to everyone or just him?
Can you find out from school whats happening?
I can see how lack of structure and a huge long break is really bad for him.

@putyourbackintoit, sorry you are feeling so low today, its ok to lose it in the small loo! We all lose it sometimes ,its so bloody hard, feel free to vent

After a wonderful start after half term DD hasn't been in since monday after WhatsApp message incident and now compounded by being told by senco they are removing german from her timetable ( she was immensely relieved) to senco apologising profusely and saying she made an error head of year wants her to continue, emailed head of year she replied saying they need to follow procedures and assess DDs progress and she can talk to DD about trying instead of refusing! ( The well worn phrase used on here can't not won't springs to mind) Ive requested phone call.
DD withdrawn crying,and feeling sick in her room.
Feels like im banging my head against a brick wall

runner in my experience dropping "difficult"(proving aren't core English,maths,science) subjects isn't normally an issue if helps in the long run(not sure if that's just our schools tho)
Put

On a treadmill here too.dd2 hypervigilant state means heads in sand over schoolwork.ive had letter need contact them.i have a meeting on Wednesday(which wild horses won't get her there,but she's already panicking over the outcome of))they saying need professional note saying not fit for school.camhs saying they need contact them,school saying against policy info needs be given TO them not them source it.ffs.ended up contacting g.p asking note(which of course had to be in writing so as I don't drive trail over to hand that in) school want it in time for meet.doc says 21 day turn around for note
Camhs contact asking what support we have for DD(erm,I thought was you?!) And sending links for uass and about school refusal

I'm totally worn down at the moment,kids all going off on tangents and I'm in the middle,alone,pulling my hair out not knowing which way to turn...

I have second covid vaccine laterwhich hoping don't result in any issues.first one I was so tired and joints hurt so bad I couldn't move most day after.not ideal when D's needs support prep food for himself(even then he's only just managing cereal )and dd2 needs walking out when stressed...

Bagpuss if the Psych suspects bipolar NICE guidelines state, at 14, she should be referred to the Early Intervention for Psychosis Service regardless of symptoms. As an aside, have you ever suspected ASD? It is relatively common for high functioning autistic females to be misdiagnosed with bipolar first.

Runner complain in writing. Changing the plans knowing DD has ASD is unfair. I would insist she is allowed to drop German as a reasonable adjustment, dropping MFL when there are additional needs isn't uncommon.

Put I hope today has been a little easier. Hard to manage alongside working, but can you limit screen time? It won't be helping DD's MH.

Zoo CAMHS should know school won't request evidence because it adds to the complexity as CAMHS would then need to ensure they have permission to disclose information. School should know written evidence is unlikely to be available less than a week after requesting it. Do CAMHS agree DD2 isn't fit for school? Have you thought about applying for an EHCNA?

Tis if DS is restarting A levels I can see why school are suggesting not going back until September. Some of the focus now will be on post 18 options - UCAS, apprenticeships, careers info etc., and depending on the subjects there may be little point moving on in the syllabi if DS hasn't built the foundations.

However, if DS does want to attend until the end of term, legally the school can not force DS not to attend. They can not remove DS from the school roll and they can not exclude without sufficient reason. You could ask them to reconsider, pointing out the lack of routine for so long is likely to hinder his progress. Although be aware resitting is not a right so if challenged the school may decide DS can not restart A levels.

Can you come up with a routine together? I think you have to insist on going to bed at a reasonable time and getting up each morning, otherwise becoming nocturnal exacerbates mental health problems. Easier said than done, but despite being 17 sometimes they can not rationalise what is best for them. Give him jobs to help with at home, cooking, exercise, time spent outside each day. He may not manage this alone but could you help him organise his folders, make revision notes to keep the content fresh in his mind and ensure he is organised for September.

Is it bedtime yet? It's been a long day.

@1jumpforward2back thank you I will ask the psychiatrist about the intervention programme.
I can’t match ASD to her in many ways as she has always been excellent with relationships/eye contact/emotional intelligence etc. There are no symptoms along those lines at all. I know people can mask but it’s just she’s always had friends and been warm and loving and if anything over concerned about how others feel etc.
We thought maybe ADHD but again so many of the symptoms just don’t align at all.
She had a long session with a psychotherapist who specialises in mood disorders and she felt my DD had described classic symptoms of this but clearly something chemical not in response to any deep trauma or anything.
I do feel they will explore other ideas with us though as we go through trying certain routes they are not stuck on one idea if that makes sense.
Not saying that those other conditions mean people are not loving etc it’s just the symptom list always shows lots of struggles showing emotion and relationship problems.