Need help, reassurance, advice... anything. SEN teen pushing me to the edge.

[Theghostofchristmasarse]

This is long and complicated sorry.....im just at the end of my tether.

DD is 15, 16 in April. Autistic , possibly ADHD but refuses to get assessed. She's been out of school since September of year 10, I managed to get her an EHCP and eotis. She's got online school, doing 3 IGCSE. English and maths and English lit. Only started in September, a year behind. Very clever academically able

I've got funding for more. She can't do it. I don't know if it's don't want to or can't to be honest. More online provision, game changers and an animal care course. Flat refused to even try.

Tribunal in Jan 2027 because the LA won't write the EHCP for eotis, it still has school provision and I'm worried this means they'll try to take it away.

She's at home all day by herself, apart from a half day I take in my planning periods (teacher) and my day off, which is mainly me taking her to a guitar lesson, which she loves, and a dog walk with the guitar teachers dog, and things like coming with me to the shops as she's not able to get out independently.

I had a chat with her today as she's under UCLH to get support for chronic fatigue and hyper mobility. She's refusing to go to the group online meetings and now, to the next appointment. So they're going to discharge her.

Which means no help or support, no evidence to help with appeal and nothing to help apply for PIP.

I mentioned that we will get the pip forms in about two months, she wants to fill them out herself. She's very clever, very mature in a lot of ways, but she cannot manage this. She would probably downplay all the help she needs and get nothing, or just not fill them out. It wasn't guaranteed anyway, and she obviously would have had a chunk of it in her account, but it covers all the driving I do to get her places, appointments, send support online, heating, food, clothes to replace the ones she trashes, or new bedsheets when she's wet the bed so many times they need replacing...it allowed me to be part time so I can be around for company, she has no friends and goes nowhere.

Her DLA means I get some universal credit, which makes up for the shortfall from full time teaching. As she's doing IGCSE until at least June 2027, I had planned to try to keep doing what I'm doing so she's not alone all day every day. Now I'm thinking I'm going to have to ask my employer if there's enough teaching for me to do full time from September (unlikely unless I taught something else in addition to a nearly full time timetable and head of department role, which would just add to my workload and probably tip me over the edge quite frankly)

I don't think she would have got pip anyway, as the life she has now means she can cope, but at least if I'd applied we would have had a little longer of DLA to tide us over. I just know she's going to get the forms and ignore them, or throw them away. Or say everything is fine (it's not). Even if she got to an interview assessment she wouldn't go, or would tell them everything is fine, or wouldn't speak at all. Could toss a coin to guess what she'd do.

I'm just so frustrated. She spends all day doing whatever she pleases with an hour or two of online lessons at most. I come home to the kitchen in a state, her bedroom is a horror, food everywhere, clothes just spilling out, disgusting bedsheets, because she won't let me in there to help. She barely showers most days, has loads of fillings as she won't brush her teeth. She's low on iron, folic acid, etc, but won't take the tablets. She's exhausted by basic tasks, can't walk around for more than half an hour without being in pain or exhaustion. A day out means two days in bed.

It's what she's needed so far, I know that, I've had to remove all demands to help her get better. But I've given up so much to get her to this place. I've basically had a second job managing her EHCP and she's just throwing it all back in my face. Her life is shit compared to other teenagers, I feel so sad for her that she's got no one and she's alone all the time.

I'm so grateful that she's learning, she's ok mostly, she's healthy mostly...its better than it has been...but it's been after years of hell, self harming, eating disorders, violence to me and her brother...burnout, not leaving her bed for days, and ebsa. It's only just now where I've got to the point where I'm not having to bring her food just so she will eat in the last few months, I'm not waking up in fear that something has happened to her while I've been asleep, I don't worry all day or drive home because she's not looked at a text and I'm scared she's done something..but I'm just so worried about the future, I don't know how we are going to afford day to day if I don't go back full time, but also if I do, how she's going to cope with no one here for 5 full days.

I can't reason with her, she gets angry and can only see her side of things. I try not to push anything, any questions are answered with 'i don't know'.

I'm in tears yet again today because it all feels so hopeless. I can see her doing the GCSEs (and potentially not doing the exams at all, there's every chance she would just refuse to sit them) and then just refusing to do anything else. She's only coping with life now because she literally doesn't have to lift a finger. If she's having a bad day she can just stay in bed. There's no way she could cope with getting a job or going to college, at least right now I can't see it.

I'm trying not to worry about the future, I know she'll get there eventually, but I just feel so angry and hopeless right now. On top of that I have a divorce going through and an autistic 10 year old DS who is waiting on an ADHD assessment and who cries about school every morning, masks whilst there and explodes most evenings.

Her dad lives an hour away and is fun every other weekend dad and stepmum, they get her best side. I think they've been feeding her crap about how well off I am and how they're suffering because of the financial agreement we came to. I have to sell the house in 2027 and I need to be able to afford the mortgage until then, 18 months at least. After that I have to be able to buy somewhere smaller and more affordable but also so she has some independence and space to herself, as I can't imagine her being able to move out anytime soon.

If you got to the end of this thank you. I can't get advice from anyone, my friends all disappeared, I don't go out apart from work, I see my partner once a week and he's very supportive but feels I need to sit her down and explain the money situation and how the pip application might allow me to be home for her, but I know she won't understand, she'd just get angry because understandably she just wants to be normal and everyone just to leave her alone.

That all sounds so hard. I don’t have any advice but you sound like an amazing mum. 💐

If you asked DD I'm the worst ever...😭i know she loves me and she does show it sometimes but she's so hard to live with sometimes. I walk on eggshells all the time. I can't even be in the kitchen if she's cooking because she hates being watched doing anything. Even if I'm not watching!

Teenagers are hard, add SEN and it’s even harder I’m sure. I hope you occasionally get to do something nice for yourself. You deserve it.

Take a breath. You aren’t the worst ever. This isn’t your fault. But neither is DD choosing to throw your support back in your face.

For the PIP, you can request to become appointee. If you haven’t already had a letter about that, you should contact DWP. You don’t necessarily need DD to agree to you being appointee. You can explain why it is necessary, why DD cannot manage the claim herself and point to any evidence to support that. (You can use the EHCP are evidence for the PIP.) If you are appointee, you would be the one completing the form, speaking on the phone (some assessors push to speak to the claimant but you can push back) and, if awarded, receiving the money to spend in DD’s best interests. If called for a F2F assessment you could request to change the type of assessment, if that isn’t agreed she would have to attend but you could speak.

From your posts, DD should get PIP. I know you said her restricted life makes it appear she copes, but she doesn’t. Read your post again. She isn’t coping. If she was, you wouldn’t be writing the post you just have.

For the EHCP, it is very early days. DC often build up EOTIS packages slowly. Some much slower than what DD has managed. She needs more therapeutic provision. If she can’t engage in direct provision right now, that could just be indirect provision right now. You can request an expedited hearing.

For travel costs related to the EOTIS provision, are you receiving mileage?

Have you had a carer’s assessment?

Some parents find counselling helps.

Would DD take liquid iron &/or folic acid? Or would she be amenable to infusions?

Thank you..I had assumed that we would have someone call or visit to ask her, she will say no, or potentially just not speak to them.

I sent off the appointee form a few weeks ago, assuming she'd want nothing to do with it.

I'll just have to see how it goes, if the forms arrive and she's still adamant she wants to do it, then I'll take copies just in case she decides to throw them away or make out she's got no issues.

I might start just giving her money from her DLA now each month so she can start to budget for herself, all the sweets she buys when we go shopping can come out of that. Hopefully she'll realize just how much we rely on it and the value of applying.

And yes, I'm just trying to remember she's in a much better place than she was, online school is going well. She's just not ready for anything else I guess. Can't be encouraged to try anything new, including anything therapeutic.

She won't take anything consistently. I'm not sure why, she knows it'll help a bit st least, but it's almost as if she doesn't want to try anything that'll help or remind her she's not like other teens.

Sorry not sure what a carers assessment is? I get carers element? I earn too much for anything else. Tried counseling but I just can't fit it in consistently, all my free time is work, house stuff, DS or DD.

Some have a home visit as part of the process to becoming appointee, but just because the person objects or refuses to meet them doesn’t necessarily mean the person requesting to become appointee can’t be appointee. Some are made appointee despite the claimant’s claims they don’t need one.

Therapeutic provision can still be included in the EHCP, even if DD can’t engage. Indirect provision doesn’t need DD to engage. Sometimes it doesn’t even need the CYP to meet the professional.

If infusions could be arranged, they don’t always have to be consistently given. Some only need occasional ones. Would DD be amenable to that?

You can have a carer’s assessment regardless of what you earn. It is a social care assessment. On their website, Contact has a model letter you can use. They also have one to request an assessment of DD’s needs if you wanted to do that.

Ok thanks so much. It looks like my local council only do them for caring for over 18s, I'll do a bit more digging.

Infusions as in needles? I can't imagine she would. It took 5 appointments where she refused or they couldn't do it or couldn't get a vein and then a specialist hospital appointment to get blood drawn for tests recently, she had a full meltdown and it was managed eventually...Last time she had inoculations she fainted in the car on the way home and I had to pull over to help her.

I'll just have to see what happens with the appointee request I guess, depending on her mood she'll either say no I don't need one or just refuse to talk to them if they need to see her.

Today she wouldn't wake up for her regular guitar lesson, bad day. Still in pj's and not eaten. I'm worried about evidence for PIP, all I have is consultant letters and her EHCP. I could get her online school to write something but it might not be useful, I guess it could show how many hours she manages each week and that she barely ever speaks, her guitar teacher could write something about how even though she loves it she sometimes can't cope with going and I have to support her to go. He's known her three years and that's happened regularly. I've just collected his dog and brought her back to ours for DD, it's perked her up.

I really don't have much else, evidence that was used for the EHCP over a year ago, attendance records from her old school maybe.

I just don't know if it'll be enough, or if she will downplay everything on the form. I've got a local charity who help with pip applications contacting me in a next few days for some advice, she might listen to them.

@Louloubelles thank you...yes teenagers can be horrible! I should know, I work with hundreds of them...I do enjoy them mostly though, and I guess I'm struggling because I see the "normal" things they're doing at her age, every day.

I try to get time, usually whilst I'm waiting for her to do a guitar lesson I'll have a mooch in a charity shop or something. My evenings are working and spending time with her as otherwise shed just be wallowing in her bedroom. I do get every other weekend free mostly which I'm know I'm really lucky to have, problem at the moment is it's mine and DPs only time child free together, but also the only time for jobs like clearing the loft or DIY...

Your council cannot say they only conduct carer’s assessments for those caring for over 18s. It comes under different legislation when caring for your child under 18, but you can still request an assessment.

Yes, an infusion would involve a needle.

For many, consultant letters and an EHCP (and the evidence contributing to that which should be listed in K) is more than enough evidence.

Thank you, I'll try the letter instead then, as there's links for carers but nothing specific to parent carers, plus it's a self assessment questionnaire with 'helpful videos' with suggestions like ' get out more' or take some time for yourself...of course, hadn't thought of that!