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

Twinkle DD wouldn't have finished school. Even now Judicial Review is relatively quick. Usually the threat works, if not the pre-action letter 99% of the time does, it is unusual for parents to need to go all the way to a hearing. If the LA are refusing to provide medical needs tuition or they are in breach of the timescales you should threaten JR.

Whilst an appeal submitted to SENDIST now would be heard next year, although before June, it is still worth pursuing because EHCPs can last until 25, so if the LA refuse to issue you should appeal.

Bubble I'm not amazing, but we have been through the EHCP process for both DS1 and DS3. If allowed LAs take liberties, make up their own unlawful policies and fail DC. Without being on the ball DS1 wouldn't have all the provision he does and I doubt DS3 would have an EHCP at all. Don't be intimidated, the system is designed so parents can apply, don't listen to the school or LA if they tell you DD won't get an EHCP.

Thank you all for wishing us good luck- it must have worked as DD managed to attend- hooray! One day down 3 to go...
She was slow getting up so we were late leaving ,she then announced if we were even a minute late she wouldn't get out of car! We were 5 minutes late but thankfully she did get out of car and go in.
It's the first full school day she's managed for over a year. She's exhausted and I haven't managed to get much information out of her tonight. I hope we can keep ball rolling, that she likes it and is offered a place so we can start tribunal process. We will appeal for a specialist placement either way.
Also had a meeting with existing school senco and provision evaluation officer today.
The PEO basically wants us to retry everything we tried in the last year , I have a feeling LA would like to stall 2 years , wait for her to fail gcses due to struggling to access school then in 6th form and offer her specialist provision,the likes of vocational skateboarding academy, or a music media academy were dangled like carrots in front of me, not tempting options as DD has no particular interest or talent in either but is bright and in right environment is more than capable of GCSEs and A levels .
When I asked about specialist 6th form for Alevels or retaking gcses I got a blank look and was told there wasn't any.
Just looked at tribunal forms and lost the will to live. Started to draft something but will take a lot of time and effort.
Any advice for filling out the form, reasons for appeal etc greatly received.
Zoo- how did you get on today?

Does anyone's else's child just refuse to leave the house? That's what's happening with us and it's so hard. He gets so anxious and his world is becoming smaller and smaller.
He has his tutor virtually and he's anxious about that, it takes ages for him to settle down. How I am going to ever get him back to school I don't know!
I don't know if he is manipulating the situation, but there is genuine fear when we talk about going somewhere.
I am still waiting on CAHMS, have started the EHCP process and waiting for his ASD assessment. We are thinking PDA as well.
When did yours start with the anxiety? 8 I feel is so young, he 'should' want to be hanging with friends, being sociable and playing, but he just has no interest in it, and on the rare times we have played with friends recently, he has enjoyed it but becomes more and more anxious and needs to come home. I'm lost.
I was a very anxious child, can remember feeing anxiety from age about 5. I masked until I was about 11 but was still able to go to school and socialise, I loved going out with friends.
Im just so worried as it's started so young and I can't see an end to it.

@alwayscared that sounds so difficult.
@1leapforward2back i'm another one in awe of your knowledge.
@Bubbleswithsqueak i'm another one that gets angry.
To all othe other posters well done on yesterdays small triumphs.
ds's scholl have finally contacted me. Yes, its to tell me off!
The adhd form one of his teachers has to complete i've asked my dd to hand in to him. As he also teaches her.
Apparently i havent followed the schools chain of command and should have done it via two other heads.
The one who 's berated me never answers her emails.

Bubbles that sounds petty and frustrating, I think you have other priorities right now!
Always- I completely understand, I wish I had a magic wand.
DD didn't manage second taster day at specialist school today, tbh it was like setting her up to fail, 4 full taster days of school to be offered a place when she hasn't managed that for over a year.
They have said if she can't manage taster days they can't meet need as she won't go.
If she manages the next 2 days they will offer her a place, no pressure then! They think then can help her, have helped many other dc in her position but she has to be ready to engage and may not be ready yet. They are totally independent so LA can't force a place( LA funded schools are full and dont have 6th form ,she's in year 10)
Not being ready to engage is same line CAMHS used .
So between a rock znd a hard place -do I leave my lovely but vulnerable DD alone in her room and wait for a miracle ?!

That makes me so cross on your behalf runner the not being ready or willing to engage is a cop out. Often these children and young people can't engage and without mental health support won't be able to get into a position where they can.

I've heard the same line from other people countless times from CAMHS, the very people who are meant to be helping being so dismissive.

4 days at the new school is incredibly unrealistic and way too much pressure for a child that is struggling with school attendance, I'm sorry dd didn't make it in today after a positive day yesterday.

It's tough that so many of us and our children are facing these issues

Thank you Starrynight, your outrage made me feel better somehow.
Scared, the only small consolation I can offer is that you have time on your side, I have been talking to a parent support group and it took many parents 4-5 years to get the right support and provision, it's depressing and exhausting but you do have time on your side.
DD is 14 and if they procrastinate that long they can wash their hands of her.
Do apply for ECHP and get things moving, I would also recommend applying for DLA.

Runner - four full days to be offered a place for a child whose issues are around anxiety around attending school?!! Surely their job is to get her to the point where she can engage? If she could do four straight days, she wouldn't need the specialist support?!! I am a teacher and sometimes I despair of my colleagues. In whose mind does this make any sense?! Surely just getting through the door of a new school building is a demonstration of commitment and engagement?

I managed to have a very brief conversation with DD yesterday about her anxiety - she was able to tell me (via answering questions) that interacting with people didn't feel any harder than it used to, but that she feels like she has less energy and resources to push herself to do it. We also managed to talk a tiny bit about schoolwork, and whether the main issue was interacting with people, concentrating on the work or both. She said both, but she is going to have a go at doing a little bit of work on her own and see how that affects her. It felt like a really good bit of communication because we were able to say that it was ok to push herself if the end result was that her mood improved, like when she pushes herself to get outside with the dog. But if pushing herself was detrimental, then that wasn't a good thing. It seemed to click a little bit more for her that she is ill, and that the most important thing for us is that she starts to get better. It's also quite sad because it feels like we have spent a lot of her life pushing her to do things that she finds difficult...

I think we have (maybe temporarily) completely let go of the idea of getting her back in school, and it's very freeing. She will do her GCSEs if and when she can , and if and when she needs to.

And a possible small win - she has asked to go to a friend's house as part of a small group on Saturday evening! Not sure how she'll cope and how exhausted she'll be, but it feels like a positive step!

@Runnerduck34 I'm sorry DD couldn't manage today's taster today and I hope she knows how brilliantly she did yesterday. As others have said, it does seem quite a tall order that she has to attend 4 whole days to be offered a place given the difficulties she has around anxiety and school - that's a lot. I hope tomorrow happens for you.

Everything about trying to get help is so difficult and frustrating and everything takes so long. No one seems to tell you what you need to know in real life and I have incorrectly assumed that professionals know what they are doing and will do the best for my DD on so many occasions. If I knew what I know now at the start of things I would have done a better job I think.

@StarryNight04 Runner is right that thankfully you've got some time to get the right help in place. Small consolation I know. DD missed most of year 11 last year and now needs to retake GCSE's somehow which we are now fighting for.

@Stilllivinginazoo how is this week going for you?

fferny1 here.
@Runnerduck34 i will l be thinking of you and your dd over the next couple of days.
@Bubbleswithsqueak i'm so glad youve managed to chat to your dd today.
Here ds is bumping along the bottom. He's spent all day in bed.
He has just recently got up for a shower & eaten some thai beef with basil.
Although i've had a reasonably constructive day, apart from the draining worry over keeping ds safe.
In contrast with everyone else Camhs were not helping here. I'm very glad they admitted today they couldnt help & it was pointless us coming to see them.
The doctor on their team admitted that we were doing all the right things. And i'm even more glad i spoke to the same person as yesterday.
Also i had a constructive conversation with the school amazingly. They actually seem to be taking mental health seriously for a change.

Muddling If I knew what I know now at the start of things I would have done a better job I think.

I think we all would. Everyone has regrets, but it doesn't help to dwell. You did what you thought was best at that moment in time.

Runner I'm sorry DD didn't manage today after a successful day yesterday. Has she spoken about yesterday? If the school can tell you now they would offer a place based on yesterday if DD attends tomorrow and Thursday then I would push for them to offer a place regardless of what happens over the next 2 days on the basis that starting properly allows for a slower transition. You have nothing to lose by pushing this point. DD has shown with the right support she can engage. Have you looked at out of county schools?

Being full (which isn't legally defined) isn't enough of a reason to refuse admission. The LA have to prove they are so full it is incompatible with the efficient education of others or use use of resources. The bar is relatively high.

Try to get an appointment with IPSEA or call SOSSEN. IPSEA are trialling a call in helpline on Fridays, too. IPSEA information on their website is a starting point. And, SOSSEN have booklets and webinars on appealing you can purchase. You aren't eligible for legal aid by any chance? You need to appeal B&F as well as I as they will be written to support the placement the LA name in I.

Cantonet that's a cop out, don't let CAMHS discharge DS. They can help, don't let them tell you they can't.

Always DS1 was 5 when his MH difficulties started. At 6 he was diagnosed with PTSD with associated anxiety and depression. He then reached crisis point and started attending a CAMHS day unit. DS3's anxiety became noticeable at 6/7, although his anxiety is related to his ASD rather than a standalone problem. With appropriate autism support it isn't a huge barrier.

I think you have to push DC to an extent - as Bubbles posted, enough to push them out of their comfort zone, but not so it's detrimental. Sometimes DC can't rationalise what is in their best interest. Can you make leaving the house part of fulfilling functional needs. For example, saying I need to go to the bank/walk the dog/post a letter/take sibling to school and you can't stay here on your own. Or I need your help to wash the car/weed the garden/paint the fence/rake the leaves/carry the logs... Once DS is leaving the house every day to fulfil functional needs you can work on more. You can make an exposure ladder - in the garden/go to the end of the drive/the end of the street...

@runnerduck34 you did well to get her in yesterday. Tomorrow is a new day. Fingers 🤞 that she goes in.
My ds13 spent the whole day today in bed. The furthest he got yesterday was to get his uniform on - complete with blazer- and sit on the bed.
I'm getting a letter from the GP to sign him off school do that we can try to access some education while we get an emergency review of his ehcp. Its all so exhausting and depressing isn't it? There will be a whole army of anxious young people with no qualifications in a few years time. Interesting!
It's my birthday tomorrow and I'm determined to have a good day, whether or not he goes to school. Most likely not as he's got 2 inset days coming up on Thursday and Friday 🙄

Mackencheese the LA shouldn't wait for medical evidence before providing education and any other provision in section F.

@MackenCheese Happy birthday , hope you have a great day, also had days where DDs got dressed then everything gone pear shaped at last minute and not actually made it in, keep on keeping on..

@Bubbleswithsqueak I think you have made the right call on stepping away from school this year-must be very liberating, and asking to see a friend is so positive.
@Cantonet I hope DS continues to show signs of improving, I am sure you are doing everything right but unbelievable (or actually maybe not) that CAMHS say it pointless coming to see them.

Thanks Leap for your advice, atm I'm a bit angry with specialist school and feel like telling them * off . Had a calm conversation with DD tonight, well it was a bit one sided but she appeared to listen at least. Talked about pros and cons of specialist versus staying in mainstream etc see how we go in the morning, if this doesnt work will try and push for EOTHAS although neither LA, School, or provision evaluation officer has mentioned this as a possibility only heard about it on here and another parents support group, will no doubt be a battle, Muddling you are right , it appears no professional freely offers information or help

Happy Birthday @MackenCheese hope you are having a good day

@Runnerduck34 sounds like you had a good talk with DD yesterday. Hope you have remained full of resolve and a little bit angry today - I find it quite a useful frame of mind for getting things done!

I haven't heard from the LA yet this week - suspect they are wasting time and planning to email Friday afternoon to tell me they can't possibly do anything I've requested. Wonder who they will have written to this week to ask if they've had dealings with DD2 - postman? Vet?!

One of the parents at DS old school messaged me today, (for background, she is snidely) to ask how we are. She then asked how long I was keeping him off for 🙄
Like this is my choice! Argh, angers me. Usually I let it wash over me but I'm feeling really sensitive at the moment!

Alwaysscared- ignore ignore ignore, I know it's easier said than done especially when you are feeling low. Many people dont understand anxiety especially of they've never had experience of it and say things like you need to be firmer or you shouldn't let them refuse to go to school etc etc.

DD didn't make it into taster day today, they were actually very sympathetic and immediately offered another taster week after half term.
Not sure this will actually make a difference to DDs likelihood of attending taster days and might just be prolonging the agony.
Stupidly I asked for a mediation certificate last week so this will now run out before rescheduled taster days.
But it will still, just , be within 2 months of final plan being issued.
Does anyone know if this is still OK for appeal even if mediation certificate is over a month old?
Cant name school on appeal unless I know they can meet need and offer a place, I don't want to just say specialist as I've heard many dc have specialist provision listed but no school so I want to pin down a placement in appeal.

Thanks @Runnerduck34 I usually ignore, just grated me today.
Good news though, we got the text from DWP saying DS qualifies for DLA. Don't know at what rate but at least it's something!
Sorry I don't have any advice for you @Runnerduck34 it's all very new for me!

Just checking in guys! DS didn't go into school, but my birthday was going well today....until I had a look at the Final EHCP that was issued last year, only to find that Section F is completely missing!! I'm so cross with myself for not spotting it at the time, but it was all so rushed and I never saw the final version that went to the school. My lawyer will have a field day with this, no doubt. Meanwhile I'm close to pinning down a date for an emergency review of the EHCP so that I can appeal. I didn't sleep well last night with all the worry

Hope you sleep better tonight mackencheese, try not to beat yourself up and enjoy the rest of your birthday.

Its made me realise I haven't gone through DDs 'final final' draft, they sent an updated final version after original final version iyswim!

went through first final version with a fine tooth comb but when the second final version came through I felt completely burnt out and have put off going through it properly , so totally relate!

Zoo if you are lurking I hope you are OK.

Always some people are so bloody nosey! I agree with Runner, ignore. Well done on the DLA, it often brings mixed feelings, relief at being awarded it, but sadness at confirmation of he tlevel of need DC has. Once you know the rate awarded there are other things you can apply for. Also, check if you are eligible for a Family Fund grant.

Runner I am sorry DD didn't make in again, although the school's stance seems to have mellowed. The deadline is 2 months from the date of the finalised EHCP (you should have a finalised version not just a draft) or 1 month from the date of the mediation certificate, whichever is later. However, don't panic if you don't have a school to include on the initial submission. LAs often don't have a school to put forward initially, sometimes even by the hearing date, and they successfully get an adjournment, so it isn't the end of the world.

The LA won't mention EOTAS. LAs are generally against it for many reasons, one being an adequate EOTAS package with tuition and other provision e.g. therapies is expensive. It is why when LAs are forced into EOTAS they try to get away with only providing a few hours of tuition.

Mackencheese Happy Birthday. Do you mean last academic year or calendar year? If calendar year the LA are, or will be, in breach of the requirement to review EHCPs every 12 months if the next AR isn't until Feb. You should have received finalised version when you received the letter detailing your right of appeal.

DS1 has had an hideous day, I am exhausted.

@1leapforward2back sorry to hear it's been such an awful day for you and DS1, hope you get some rest tonight.

@1leapforward2back thank you, I will check the family fund. I also need to check if I'm eligible for carers allowance as I am going to have to give up work for a while
Sorry you have had a shit day, its so hard

@1leapforward2back it was finalised in October 2020. I never got a copy of the final report, nor a letter about the right of appeal. I have managed to get a review for mid October now (there was an emergency review in February 2021). The LA are definitely in breach because the ehcp is incomplete.

zoo - hope everything is ok and you are lurking x

Cantonet, I am so sorry that CAMHS are being useless. Our private psychiatrist said that under no circumstances should we let CAMHS discharge DD - he said we needed to keep her in the system because (god forbid) if she ever needed residential care it would need to be funded by the NHS - we don't have health insurance and even if we did, it wouldn't be covered.

Mackencheese I hope you managed to enjoy the first bit of your birthday! It sounds like you are doing a great job of holding the slippery buggers to account.

Runner - hope the school are being a little more flexible and understanding.

Although DD is still bumping along the bottom, to steal Cantonet's phrase, it is quite peaceful bumping. She is showing signs of some actual enjoyment when she is outside, watching things and spotting things. And she is interacting a little more with me and DH - some laughing and joking (even if it's around telling us to leave her alone and get out of her room). She is doing a little bit of craft stuff, and has even tidied the kitchen for me. So the day to day is easier, but she is still very clear that the long term hopelessness is there. She is planning on seeing a small group of friends on Saturday night, so that will be a big test, I think.

My body has decided to let me know that I'm not coping as well as I thought by giving me a dose of shingles. Luckily the MN hive mind worked out what it was, and I was able to get the antiviral drugs in time to make a difference, so fingers crossed it won't be too bad...