Parents and carers of anxious teens(part 7)

[Stilllivinginazoo]

Goodness,seventh thread!
Welcome back to those who have been on board with me since the days DS was first struggling,and hello to new faces

This thread is for those who care for anxious teens.some of us have diagnosis of ASD/anxiety/depression,others are encountering and navigating escalating symptoms that are starting to prove troublesome

This is a safe,non judgemental space to share ideas,offload worries and provide support and kind words for those deep in the trenches

We get how utterly exhausting it can be and are not afraid to celebrate the small wins that in regular circles would be deemed as insignificant as participating in "normal activities"

But if we can afford private on line school what is the reason for appealing? Just to make a point with the LA? I'm a single mum, trying to work and having 2 anxious teens I see this as the least painful route,( I have no funds for education lawyers) or am I being short sighted?

I would appeal because unless you are extremely rich, an EHCP can give far more support than the vast majority of parents can afford to fund via EHE. It can provide far more than just online schooling. What about therapeutic input, non-academic provision, PfA, mentoring/accessing the community/enrichment, professional support, equipment/resources? It would be a very poor EOTAS package that only consisted of online schooling.

But now I am confused because you were the one worried EHE would prevent you from appealing. If you don’t plan to appeal, why are you worried about that?

You don’t need lawyers for an appeal the refusal to assess. If you need independent assessments and aren’t eligible for legal aid, contact Parents in Need.

If you need a pre-action letter for failure to provide s19 provision, contact SOSSEN. If the pre-action letter doesn’t work, JR proceedings themselves would be in DD’s name so she can be eligible for legal aid in her own right.

Thanks for your helpful reply. I've just been wavering today, so im sorry for the confusion! Provision under s19 has been arranged and can start next week. I have done my (costly) independent assessments/reports and still LA have said no. It just seems like stalling tactics but I suspect there are far more needy children out there.

I'm not saying I'm fabulously wealthy, but dd does not need specialist equipment or expensive mentoring. Plus I'm not convinced the EOTAS packages are that good, and a lot of it I'd have to organise myself. Plus, I'd have to fight about 2 years for EOTAS in the first place, and I'm not prepared to do so. Forgot to add, a few years ago, I appealed for my sons EHCP, got to 10 versions of the draft and still didn't get the school I really wanted!

If you EHE the LA is likely to stop the s19 provision because by EHEing you relieve them of their duty. s19 provision including online schooling is alternative provision so I think you are confused about terms.

but dd does not need specialist equipment or expensive mentoring.

I disagree. A child whose SEN is at the level they are unable to attend school does some kind of mentoring or similar support. I also suspect DD’s needs are at the point where equipment is required e.g. laptop/computer/tablet and accessories, printer/ink, sensory equipment, equipment related to any subjects she wishes to study/hobbies. If DD is unable to leave the house often exercise equipment.

I'm not convinced the EOTAS packages are that good

We will have to disagree with this too. They can be transformative when written correctly, which yes, may take appealing. DS1 has an EOTAS package that is worth over £150k pa. There’s no way we could afford that.

a lot of it I'd have to organise myself.

Parents cannot be compelled to organise, deliver or facilitate any part of an EOTAS package. Programme oversight can be included in EHCPs. So, no, you do not have to organise a lot of it yourself, you can force the LA to.

Thanks for clarifying. Hopefully others will benefit from your explanation, too. My DD can leave the house and goes to the shops and the local gym on her own, so I think our case is borderline . It's just school she can't cope with. Already has laptop, printer etc and I wfh.

So some of the things I said don’t apply, but what about the other aspects e.g. therapies, professional time, PfA, assistive technology, sensory equipment, gym membership.

We pay for the gym membership, but yes it would be nice to have this paid. The issue with therapies is that she is having counselling, but she needs it NOW, not in a years time after fighting the LA, so we have had to go private and hope it won't be forever!

Obviously EHCP provision isn’t going to be in place quickly, but someone with DD’s needs is going to need therapies, not just MH related, for years to come. So, IMO, an EHCP with therapies included will come in useful because unless rich it isn’t possible for families to fund SIOT, SALT and MH therapies on top of other therapeutic provision, online school, professional time, PfA, non-academic provision, equipment/resources/memberships/subscriptions… for years.

I understand @1spinforward2back
Yes, I will keep options open re ehcp.

Hello everyone, I'm still here in the background. Sorry to see so many of us are still battling the system. Feeling a little overwhelmed today. DD is feeling very isolated and lonely and I feel that I'm taking on all of the emotions she's feeling. She still has no real friends to do stuff with and her mental health has gone down again. The fluoxetine seemed to be working well for her mood but not so much the anxiety. She is due to start her tutoring this week under the section 19 provision. It's taken weeks but we've finally got somewhere. She will have 24 hours a week up until the end of May. This will see her through the GCSEs so we've been quite fortunate. I knew there would be no way she'd go back to that school except on the exam days.
If she could magically get a social life, she would feel so much better. Are there online sites for teens to make friends, does anyone know?

@Theordinary
Sorry to hear DD is feeling isolated.
We had the same thing several weeks ago when she was hardly in school.
Are there any SEN youth clubs in your area DD would go?
There are a few in my area and the people who run them seem so lovely and welcoming. They even offered DD a 121 tour of the facilities so she feels comfortable before coming to the sessions but we haven't managed it yet.
I feel it's one more thing I have to push and she doesn't seem keen so I have no energy to do the nudging.

With the fluoxetine, when DD was on it we noticed no improvement.
Does your DD need her dosage upped as it does seem to work for her? They do tend to cap it to 20mg for under 18s but it's always worth asking for review.

I hope the tutoring helps. Don't worry about school now. If she can manage to work with tutor and just get to exams, that's all you can ask from her.
Look after yourself. It is a long slog toll end of May. We didn't have any of the MH issues during DDs GCSE and it will still stressful enough.

Xx

@DarkChocHolic There is a local group for autism but there's no way she'd go. She really doesn't help herself as she is so rigid in her thinking (asd, obvs) She says she dislikes other autistic people, as if she's met them all! It's annoying. She just won't entertain the idea of mixing with anyone who's not exactly like her. I wish she could just find her people. Most of her problems are due to her social anxiety and lack of friendships. It's so sad. She's got up from a nap and feels a bit less negative. I'm bloody drained with it all as always!

@Theordinary what are DD’s interests? Would joining an online group related to her interests be a way forward. Until you said DD doesn’t enjoy socialising with other autistic teens (that is more common than you think) I was going to suggest Spectrum Gaming.

@Theordinary
The Mix is another youth group that comes to mind. It isn't just for SEN teens.
Sadly the one local to us closed due to funding issues.
Check your local council website for suggestions. I do appreciate how hard it will be to make DD attend one.
It's frustrating when they bat away every suggestion. We just have to keep trying unfortunately. I have been guilty of even bribery. I recently made DD go to some exercise classes just to get her out of her bed. Promised her some clothes shopping vouchers!
I wouldn't try if she genuinely couldn't leave the house. My DD was fine to go out with friends so leaving the house was not an issue.
I hope you find a way. I think once the stresses of exams are out of the way, your DD might feel like a weight is off.
Would she be open to trying for a part-time job during the summer holidays?
That's the one thing that has kept my DD going through the darkest of times.

Xx

In exactly the same situation with DD feeling isolated and lonely. We might check out the local youth club, but she's scared to go!

Morning All, thanks for all your posts. At the moment Dds main interests are Goth subculture and how to get a boyfriend 😂
She's still extremely socially awkward and but if there is anyway she can manage a part time job I think that would help a lot. I'm just not sure if she's ready for it yet.
She's doing her very first day of online lessons today. She's finding it a bit tough speaking to the tutor over Skype but she's giving it her best efforts.

@Theordinary fingers crossed for the online lessons!

@Mackencheese- sorry it's so difficult I do understand the temptation to deregister to try and remove stress.
I resisted temptation because I'm bloody minded and wasnt letting LA off the hook 🤣
I think spins advice is good. Is there anyway you can just keep her on roll but not send her in- perhaps with letter from CAMHS or GP to support this?
We stopped trying to get DD into school for a year before we got EOTAS via tribunal . We put some therapies in place during this year which we funded- could you do the same with tuition whilst you appeal?
IME Tuition companies charge £65 p/h plus vat- although if you pay tutor direct this will likely be £30 p/h. SALT , OT and Art therapies are about £110 per hour.
So cost is huge.
Whatever you decide I hope it work out well for you all.

I heard from Zoo btw, she's been poorly but asked me to let people know she hopes to be back online soon- I know a few of us were concerned about her. If youre reading this -Get well soon Zoo!

@MackenCheese how are things today? I was trying reading back and trying to catch up with how everyone is doing. I saw that you were thinking of deregistering your DC. I know how you feel actually. You just want to draw a line under it all and get them out of the toxic environment. I do agree with the others though, who say it's probably best not to. When I see what we've been given under the section 19, I'm fairly happy. Although it's taken forever, I am glad that I held the LA to account for her education. It's all just too expensive otherwise. Parents shouldn't have to foot the bill for having a poorly child. There's no way we could have afforded 24 hours a week of tutoring. I do hope you get a decent package of out of school provision. Is your DC in year 10?

@Theordinary good luck with the online lessons. If they don’t work there are other options. They don’t work for my DSs. Especially DS1 who disconnects when things get emotionally difficult.

@Runnerduck34 I am surprised you can find good tutors for £30ph. DS1’s tutors aren’t via an agency or tuition service but are SEN specialists, they all cost more. DS1’s HLTAs’ wages are £25ph (much to the LA’s annoyance).

@1spinforward2back so far, so good with the lessons I think. She found it quite intense and is absolutely exhausted now. The two tutors are SEN trained which means they are pretty patient. She's has rejection sensitivity so even the slightest sign of annoyance in someone's voice upsets her and I've let them both know this so I hope they are mindful of this.

@theordinary
Pleased the tuition went well. 121 is pretty intense nowhere to hide.
My DD also very sensitive to tutors moods and hates to do
anything wrong.

Spin- you maybe right re tuition fees- it's a flat rate the tuition company charge regardless if experience of tutors ive become picky about who can teach DD- they will go for less qualified cheaper option if they can but despite charging LA £75 p/h I've been told tutors are £30p/h
In our area of the country its very hard to find tutors and options are limited.
I would like to employ them myself but DD likes going to tuition centre and its good for her to go out- plus I need them as an exam centre

Thanks for checking in @Theordinary . Our mutual friend @1spinforward2back , reminded me of the importance of not deregistering, so we are still with school. I actually had a good chat with the SENCo who also seemed to think we should keep the ehcp in mind for next term. Currently waiting to start s19 AP after Easter. I will keep you posted!

DS is about to crash out of GCSEs completely sadly. We have his annual review coming up, so looks like we will move to EOTAS for post-16. Is that a possibility?

@Runnerduck34 nothing wrong with being picky about who works with DD. Getting the right person to deliver the provision is just as important as the provision itself being right. If either the person or the provision doesn’t work, DC’s needs aren’t met.

@MackenCheese if DS Y11 now, you should have had a phase transfer review already and the LA must finalise by 31st.

EOTAS is possible. I have 1 soon to be 2 with EOTAS. (Or rather 1 with EOTAS and one with EOTIS - frankly I don’t care what the judge wishes to call it. There are far more important things to focus on than what vowel is used or whether there is a C or /C on the end.) Mine are still CSA, but the same rules apply to post 16 and lots do have it post 16, including runner’s DD. Unfortunately, you may have to appeal.

@Theordinary pleased to hear the tuition went well.

Thanks, the review is tomorrow . The LA have been poor and have done nothing about phase transfer even though year11. If 31st March then we're stuck as it's the middle of the bank holiday weekend. What a mess! Ill be pushing for EOTAS. DS so distraught he can't even tell me what he wants...

You need to remind the LA of the statutory deadline and push them to act ASAP. This is important because if you need to appeal, and many do to get a good EOTAS package, you need all the time you can get. Send IPSEA’s model letter. If that doesn’t make the LA act ASAP post back here for the next steps. Do you have evidence EOTAS is required?