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

Uh, rubbish day. Spoke to LA regarding a carers assessment for me, but they won't because he doesn't have a diagnosis. Does that mean I can't apply for carers allowance?
Spoke to the team that will be doing his ASD assessment because I'm worried that, because it is virtual, he will mask his symptoms. They haven't asked for any input from us. They are going to ring me back.
Told to not apply for EHCP until he has his assessment.
Lots more waiting for people to ring back and assessments. Don't even get me started with CAMHS!
DS meanwhile has been so anxious today, he hasn't even left his one particular comfy chair downstairs. Won't even come for a cuddle.

Well CAMHS was surprisingly positive, although only really because we don't need anything from them as we're paying for everything already...

They agreed that DD should not be even considering going back to school, even online provision. School are not making any kind of fuss at the moment about attendance (I love her school), but if they need a letter the CAMHS nurse will write one. She is pleased that DD is on medication. She said that if we had to wait for a CAMHS psychiatry appointment she wouldn't even be able to say how many months that would take - fucking disgusting, and terrifying for anyone who can't afford £100s for private.

She also thinks that there's no point trying to force DD to engage with talking therapy until the meds start to kick in and she is more receptive. But she is going to support DD to write a safety plan via email.

We are in the system, and I'm going to start the marathon of the EHCP process so that we stay that way and can get what DD needs to get some sort of education when she's ready.

Fferny - we make pots of tomato based sauce with veggies blended into it. We call it fussy child sauce. We use it in as many things as possible - pasta sauces, lasagna, shepherd's pie, curries - it's surprisingly versatile! And smoothies help for some fruit. Better than nothing...

Runner - your mental health is important too! Oxygen mask and all that... Glad you had a lovely weekend.

Bubble the CAMHS appointment sounds positive. I hope they continue to be supportive.

always carer's assessments and carer's allowance are different things. Carer's allowance eligibility is based on caring for someone in receipt of at least MRC DLA and income, so being refused a carer's assessment doesn't prevent you from claiming carer's allowance. However, it isn't lawful for the LA to refuse a carer's assessment because of a lack of diagnosis, one isn't necessary, complain. See here.

Who told you not to apply for an EHCP? That is wrong, don't listen to them, apply now. You don't need a diagnosis, and waiting only delays DS receiving support.

Ok thanks @1leapforward2back
I just feel really lost right now
Our new head teacher told us to wait as having a diagnosis will help with it. But we might not even get a diagnosis!

Always don't listen to the HT, schools often put parents off applying, either full stop or delaying, but when parents apply they successfully get an EHCP. Many posters on MN were dissuaded from applying but now have DC with EHCPs after submitting a parental request.

leap can I ask do you know why schools put parents off? I'm thinking of starting process for ds as school are starting to imply they don't have teacher resources to spend time encouraging him in, in the mornings (despite the fact that with time and patience he has managed to get in every day since starting there 3 weeks ago). Is it a funding issue or something?

Starry it is multifaceted. Some school perpetuate the LA's myths (need a diagnosis, be 2 year behind, have spent £6k, 2 cycles of assess/plan/do/review...) because staff are ignorant to the law and process and swallow the LA's unlawful practices hook, line and sinker.

Others intentionally dissuade parents and repeat the LA's unlawful policies for a number of reasons. Primarily because they may be tied to providing a higher level of support than they have been providing, which they have to partially fund (usually schools are expected to fund the first £6k of support from the notional SEN budget). Other reasons include because it creates paperwork or the LA have strong armed them (every LA has schools that are more in the LA's pocket than others).

If the school need more funding to support DS whilst you are going through the EHCP process they can apply for high needs top up funding.

Thanks very much leap. I naively thought school would have his best interests at heart but I'm definitely getting the vibe they are less patient then they were. It adds pressure to an already difficult situation.

Leap - tolerates in this house is what I've optimistically reclassified as enjoyment, it's as good as it gets, for the moment anyhow!

Always- do apply for EHCP now, DDs school also tried to put us off, saying they are giving maximum help already, have to do several cycles of support etc. At the time of applying she was waiting for ASC assessment but not formally diagnosed.
But we got EHCP, took over 30 weeks rather than statutory 20, and LA are insisting on mainstream, so not perfect and we may appeal but we got it!
It takes ages to go through process, her school are saying they can't meet need so even though she has it its not fully implemented, mainly because she's not going in very often but even if she was I don't think they have resources to deliver it.

Bubbles, pleased camhs appointment was good but as you say would be a different story if you were relying on them completely, it's shocking our children can't get help on NHS when they need it.

Couldnt get DD into school, going to try a different track of going in for just 1 hour and spending it in sen area and try to increase slowly, been there done that bought the t shirt but have to keep trying.

Thanks everyone, I'll start the EHCP application ASAP

Starry sadly many pupils with SEN are not having their needs met at school when more could be done to support them, even if that is applying for further provision. LAs are not blameless by any stretch of the imagination, but some schools are also at fault.

Runner as good as it gets fits perfectly. I'm sorry DD couldn't manage school today. How does she feel about the new plan? Resources aren't your concern. If the school need more funding they need to approach the LA. If DD can not attend the LA must still provide the provision. If the provision in section F isn't being delievered complain to the LA. It is the LA who are legally responsible for ensuring the provision is provided, not the school. You can enforce any provision that is specified and quantified in section F via Judicial Review if necessary. Unfortunately, if section F is vague and woolly it isn't enforceable.

@Bubbles glad you had a good meeting and I hope the ehcp application proves to be relatively straightforward. The sauce thing sounds a brilliant idea. I used to do something similar when my kids were younger but I'd forgotten. I'm amazed at all your stories of school manipulations & mistruths. Thank goodness for your knowledge of the system @Leap. A system that sounds so hard to navigate for parents. Maybe made deliberately tricky.

I think Ds is picking up. It's just over a month on the pills. Small glimmers, in as much he asked me to buy some healthy food today and no more sweet things. DH has been buying him lots of Ice cream to cheer him up and he's developed a tummy. So he's been marinading chicken and chopping things and we had to trust him with a knife for the first time. Knives have now gone to bed 😴 But he's got the broccoli out👍.
Still nocturnal though...

Starry - I too thought school would have my DC's best interests at heart and they certainly seemed well intentioned. In DD2's case I now know there was a lot more school could and should have done and outside agencies they could and should have involved. The school has relatively few children with SEN so I think there was a problem with lack of experience and knowledge. Certainly DD2 appears to be the most extreme case of anxiety/too ill to attend school that they have had. This is not an excuse and the MH policies section of the school website would suggest a better understanding than we experienced. I hope they have learned from our situation. I assumed school and LA would work together but I know now that's not necessarily the case. No one from school suggested an EHCP to us although they agreed it was needed when we said we were applying!

I have gained tremendous knowledge from this support thread and this forum which has helped me to understand I should be doing to try and get DD the help she needs. It really does seem to be down to parents and I don't trust anyone else to have DD2's interested central to them.

I had a non-Friday email from the LA this week and it didn't have the usual refusals (although didn't agreed to anything either). Triggered I suspects by complaint we sent.

I hope Zoo is ok.

Apologies for the spelling mistakes in my last post.

Muddling , pleased you got an email from LA, mine are ignoring me, I seem to be invisible.

Fferny , it's encouraging you are getting glimmers of hope, I hope you soon see more and more of those glimmers .

Haven't been able to get DD into her school for nearly 3 weeks now, she had one taster day at potential new school and then completely stalled.
I just don't know how best to help her or what to appeal for.
I think she probably needs a combination of specialist school and EOTAS to help her re-engage with education, but atm I can't find a school for her and LA aren't helping even though she has no placement named on ehcp.

I also hope zoo is OK, I think recently she had problems with phone and/ or laptop so hopefully that may be why she is quiet.

Sorry people are struggling to get DCs into school, and that schools are being rubbish with support. I'm finding the EHCP forms hard going, but if anyone needs help with DLA I'm a wiz at those!

We have had a hard couple of days - DD isn't really any worse but I think the realities of what lies ahead are starting to hit for DH and I, and we have just been feeling incredibly sad. I had an emotional conversation with my mum tonight - just being honest about how tough things are and are likely to continue to be.

Someone on another thread recommended a Flow device for depression (although they're not licensed for under 18s) - I thought it was quackery, but there are actually NICE guidelines about them. Has anybody tried it? (the treatment is called tDCS). Also negative ions? The evidence for that is even less robust, but I can't see any harm in bunging an air purifier in DD's room if it might help...

@Runnerduck34 - I'm sorry DD hasn't been able to make it to school for the last few weeks, it's so difficult. I know you are appealing for specialist placement, can you complain to your LA in the meantime (appreciate black hole of no reply)? Could they provide medical needs tuition which can be online on home visits as DD is unable to attend? We were told that only consultants or level 3 CAMHS could refer however I don't think this is true @1leapforward2back ?

Hi All,

I got recommended the below treatment program for my child's anxiety. Has someone come across it before and any thoughts about it?

www.osianxiety.ac.uk/#!/

Thanks!

Fferny LAs certainly make life harder for parents, but while ever they are allowed to continue with their unlawful practices without repercussions it will continue.

Runner have you considered residential? If that's not for you, and it isn't for everyone, I would push for EOTAS. A proper EOTAS package though, with therapies and other provision, not a few hours tuition on its own. Does the EHCP specify a type of placement in section I or is it completely blank? In the meantime, as Muddling posted, DD should be receiving tuition. The LA must also provide any specified and quantified provision in section F.

Muddling where evidence isn't quickly available from consultants or CAMHS LAs shouldn't insist on specific evidence, instead they should seek other evidence such as from the GP. The guidance is clear on this. If the LA refuse to provide medical needs EOTAS tuition you can threaten Judicial Review.

Bubbles We have HEPA air purifiers to help with a condition DS's have. I don't think they make a difference to DS1's MH but who knows whether an ioniser would. I have heard of tDCS, both success stories and not, but no personal experience.

Hello ForeignH- I havent heard of that program before, so no feedback-sorry.

Muddling and Leap, will email LA yet again and ask for tuition and support to help her re engage with education .School said last week they will now do a referral for health needs tuition (originally asked for this in February) but have been told its unlikely to be successful as they arent accepting referrals on MH grounds, although they should.
I really dont know what to do about the appeal, I have got different advice from different sources (including SEN and IPSEA) and now totally confused.
I am struggling to find her a specialist school, LA funded ones wont say if they can meet need just tell you go through LA, which is hopeless, but all of them add we dont have have places.
Independent specialist, with the exception of the one with the failed taster days, are are full. And theres a very very small pool of suitable schools.
Finally managed to get through to ipsea today and they said to appeal section I we need to name a school, I was hoping if it came to it we could appeal type of provision (specialist instead of mainstream) and not name a school -not ideal- but doesnt sound like that option is open to us. So we can appeal content but would need to find a school who would take her to appeal section I and that is looking so unlikely.
To make it even more difficult DD(14) is now insisting that she doesnt want to change schools, I think she she scared about the change. She says going to a different school wont make getting up and going any easier, I think eventually it might if the environment is right although would clearly be difficult to begin with, but she is hard to reason with.
Just feeling overwhelmed with it all and tbh becoming a bit resentful of DH as I am carrying it all(meetings, phone calls, form filling, research etc etc) Just want to scream!

On the plus side I have managed to secure a phone call on Monday with our LA provision evaluation officer so thats something at least.
Hope everyone has a good weekend

@Runnerduck34 I know hiow you feel. It sounds like you're further down the line with your appeal than me. I've found 2 schools that I like that I want to appeal section I for, but I worry that they are full or will find some reason not to take my ds. I know I'm getting ahead of myself, but I'm not looking forward to fighting with the LA to get him the education he needs

@Runnerduck34 - sorry it's all getting on top of you, it sounds so very complicated and way beyond my understanding. It strikes me as dreadful that it appears to be down to parents to find the school to name in the EHCP. Glad you got through to IPSEA but unfortunate you go conflicting advice from SEN (?) Don't think I've heard of them.

I hope your phone call with the LA provision provider evaluation officer (another new thing to me) is helpful.

I have also been known to be a bit resentful of my DH at times which is unfair as he is fully involved and does attend meetings/appointments if needed. My main gripe is that he lacks curiosity about researching things around DD2 and finding out what we should be doing. I tend to spend hours trawling the internet and emailing people which doesn't seem to occur to him - last time we discussed it he said he doesn't know about these things which annoyed me intensely as no one knows until they start looking which can be painstaking and time consuming. He just doesn't think the same way as me - I can be quite focussed and all consumed in a way he isn't (or he can be but about trivial things of personal interest to him!) Most of the time I can let it go but every now and again when I'm having a bad day I confront him.

I hope you get to do something nice for you this weekend.

Hi lovelies
Apologies to any newbie's
Been absolute nightmare here recently and I had to come out of anything that wasn't 100%essenyial to running if zoo house to try and manage what was drowning us here
I'm back now,will try and catch up over the weekend.hope everyone ticking over

Mackencheese unless the schools are wholly independent being full on its own is not enough of a reason to refuse to name your preference, the LA have to prove they are so full it is incompatible. There's also no legal definition of being full.

Runner the LA can not choose not to provide medical needs tuition for MH reasons, especially since DD has an EHCP. You can enforce DD's rights via Judicial Review. The LA SS claiming they don't have spaces is irrelevant, as above, being full, which isn't actually legally defined, is not enough of a reason on its own to refuse admission. Appealing just the type of placement is pointless when you want the type to be specialist. But, you could appeal for EOTAS - in which case section I should be blank and the EOTAS provision written in F. What would DD think about that?

X posted.

Lovely to see you Zoo. You don't have to apologise, I hope things are calming down now and you are looking after yourself as well as DC.