14 year old daughter always in bed

[AEEG]

Hi. Just wondering if anyone has experienced this with their teens and out the other side. Really need some hope please 🙏🏼

So my daughter started with EBSA last Feb. We changed schooled, tried dragging her in…nothing worked. School is shocking and no support whatsoever. She turned 14 in Oct and stopped going. We’re fighting for section 19 at the mo. Since taking the pressure off about school I thought she would improve but she seems to be getting worse. She couldn’t go on holiday with her dad. She couldn’t go to the Christmas markets with me and her sister. She’s okay most of the time when with friends and will do things. They give her confidence. She was really overwhelmed going out for a meal with her god parents. Me and her sister Xmas eve. We had to leave. She gets very upset and she did go back in the end but was very uncomfortable. She comes across as so rude because she won’t interact but that’s her anxiety. Shes an angry ball most of the time and is horrible to me and her sister. I get it’s half anxiety and half being a 14 year old girl. When she’s not with friends she doesn’t get out of her bed. Please tell me this is a stage and things will get better
Thankyou

I know 2 sets of parents who have been through this. Both have eventually been diagnosed with ME ( one after 7 years in the bedroom, one 4 years)

There is a blood test now apparently that can show if you have had ME in the past. Both of the people I know no longer have it but are both in a cycle of anxiety/depression caused by it. You can pay privately for the rest I'm told.

I have ME, there is no blood test.

Also, we asked about this for my dd. At the time she was seeing an nhs pyschologist who specialised in burnout. She told us she would get turned away from an ME clinic as it was then a diagnosis of exclusion.

However that has changed l think, but it is very unlikely to be ME. With ME people want to do stuff but can’t. With burnout they just want to hide.

Also the anxiety/depression would have lifted after recovery of ME.

This sounds like misdiagnosed burnout and it is often the case. The marker of ME is post exertional malaise. If it’s not there it’s not ME. It doesn’t need a blood test.

I was incredibly lucky and school requested section 19. I asked school to request and they did.
You have already seen the resources at ipsea? If not, see letter 22b here - https://www.ipsea.org.uk/asking-the-local-authority-to-arrange-alternative-education-model-letter-22
The LA is failing in its statutory duty towards your daughter - regardless of whether or not she has a diagnosis, she is too unwell to attend school at the moment and it has a very clear duty to provide her with an education.

In terms of diagnosis, I v much second PP on try Right To Choose pathway - you request this via your GP. It's private providers carrying out assessment on behalf of (and funded by) NHS.

All of these posts resonate so much with my experience with my 15-year-old daughter. She has been out of school since April, and is classed as EHE because I thought we could engage in the local home ed community but everything just seems too much for her. She was so unhappy at school and was spending most of it hiding in corridors or empty classrooms, I had no idea how much she was missing while she was actually there despite asking again and again for support.

I have reduced my hours at work to spend more time at home with her but we do very little, most things she says she just cannot face.
The saving grace is that she does attend college 1 day a week for a vocational course, if it weren't for that she wouldn't see anyone else outside of the household at all.

We have the first appointment in ASD/ADHD assessment next week. This has been postponed as anxiety got the better of her at our first booking. I am trying not to pin all my hopes on the process but really do hope she gets some kind of answer from it to help her understand herself a bit better.

Some days I feel calm about it all and just accept that this is what she needs, time and peace and quiet, other days I panic and think I am doing the wrong thing and should just enrol her in a new school. I don't really think that would be a good move though. Some family members thing I am coddling her, and that she will have no resilience. I think she needs love and care. I often feel frustrated that I cannot do more, that there is a whole world out there for her and she deserves more than this.

Also, OP, regardless of a ND diagnosis, your daughter is legally protected from discrimination under the Equality Act 2010 of course - "You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities."
If her anxiety (I agree potentially linked to autism, but who knows) has prevented her attending school and family stuff since last Feb, it's long term and substantial.

Sorry being quite transactional here - have a few free minutes... but thanks also to everyone who has replied here. Really helps to feel less alone.

Well, I'm only saying what doctors have told my friend who has had her child lie in bed for 7 years. He did have a blood test that showed he had ME in the past. I think maybe the current depression is because he couldn't do anything for so long. I don't know, but I do know his life is ruined and he has been misdiagnosed in the past. It's very hard to come back from 7 years in bed refusing to go out, not getting any qualifications, having no human interaction.

My friend has tried everything over the years to find out what's wrong, has spent fortunes on therapy and private treatment, battled with the school and social services.

Hi. I didn’t see the message @BeQuaintRubyRobin put before it was deleted ha ha. What did it say?! Some people have nooooo idea do they 🙄

@AEEG
Indeed. Some people can’t help themselves can they?! It said

‘sounds like phone addiction to me’

🙄

Ahh Thankyou so much. That’s given me so much hope and helped a lot xxx

@AEEG

Going back to your original post.. DD was also a ball of anger at 14/15/16. It was complete eggshells every second of every day. She would go from 0-100 in the space of 3 seconds.

Apart from the teen hormones I think it was also emotional disregulation (ADHD), anxiety (ADHD and Autism) and also her very black and white thinking (mainly Autism) .. there is no middle ground in her thought process. And just a general anger at the world as she was very unhappy with her place in the world.

It’s not perfect now but so much better and we have a much happier home life / relationship. She said the other day ‘sometimes I miss being as angry with everyone and everything as I was when I was 14/15’

I don’t!!

@ProfessorInkling I totally understand the second guessing your decisions and panicking that you may be doing the wrong thing. I think it's inevitable when our children are so unwell and there is no clear advice and zero or minimal professional support. We're supposed to see CAMHS every 2 weeks but in reality it's more like every 2 months weeks due to staff shortages - and I know we are luckier than most to have even that. It also doesn't help that we and everyone around us want them to be "fixed" ASAP, but the thing that will really help is rest and time. It's so hard to watch.

One thing that reassures me was that last time we went CAMHS advised me to let her rest completely and take off all pressure (even eg let's go for a walk) and that she should stop even thinking about trying school work. Helped me that this advice was not just coming from randoms on Facebook groups. Have you read Naomi Fisher's book on burnout? I found that reassuring too (although I still have to stop myself going over every decision I made in the past that didn't prevent her getting to this point).

Sounds great that your daughter has a day at college. Does she seem to be coping ok with that? Mine was so similar at school - going in but barely getting any education.

Thank you @lozwanger - that's really helpful, I hadn't heard of that book but have just ordered it (and the sample for my Kindle so I can start reading it now...) It actually sounds totally logical that burnout needs rest and a lack of demands altogether but the day-to-day reality of that sometimes jars with the idea of 'missing out', and while I really do not think she is lazy, sometimes the thought sneaks in. I hate this for her and wish she had never had to go through all that she has over the last few years.

Does your daughter engage with her tutor/CAMHS?

The course my daughter attends is within the 14-16 setting of a large college near us, she has had a couple of wobbles but is otherwise coping though I don't think she engages with the other students much which is a shame. Maybe that will come, she started in September which feels like ages ago but one day a week I guess takes a long time to be familiar with each other. Most students do two days, or go to other settings as well. She has talked about doing an additional day next year. This leaves us self-funding/organising any other GCSEs but we will cross that bridge a bit further down the line.

Hi @ProfessorInkling, I sometimes have thoughts like she just needs to sort herself out and stop being so lazy - but I know really that she is ill and can't. It's so heartbreaking to see what they are missing out on. School just had a language exchange for her year and seeing the smiling kids on social media was hard. Her life is on hold while everyone else is carrying on without her.

It's very early days for us with the tutor - we've just met her and she seems nice but I doubt that DD will be able to engage at this point with the actual learning. Still, the tutor is experienced and says she can take things as slowly as DD needs. We will see what happens.

The 14-16 setting sounds good, and really positive that she wants to do another day next year. Going in the right direction. Hopefully friendships may follow.

Do you have an EHCP or are you applying for one? We're right at the beginning of the process and I keep reading that it takes bloody ages, but I wonder if that might be a route to your DD's GCSEs being funded by the local authority? I think at any time you can stop being an elective home educator and the LA then has responsibility for the child's education again, and some EHCPs state that the child should have education other than in a school (EOTIS). But then I guess this might risk messing up the 14-16 placement, which you wouldn't want. It's such a minefield and I have no useful advice or experience. (Hah that last sentence just about sums up my entire life right now...)

Thanks again @lozwanger

That sounds like a good start for your daughter, with the tutor - personally I think the learning is a secondary goal in this sort of scenario and that any engagement/conversation is a success.

I totally hear you on feeling like everyone else is carrying on, living a full life. I can imagine the sting seeing the other kids apparently thriving. It's hard to sit outside of that.

Until your message I honestly hadn't even considered an EHCP - I assumed that as EHE it would be out of bounds, and that it's too late. Maybe it's not? I don't know, my head is spinning a bit today.

We - well, DD - had the first appointment with a psychologist yesterday. A lot came out of it and honestly I am so proud of her for being able to cope with the appointment, talk openly. I am trying to process it all!

@ProfessorInkling you can request an EHCNA even if you EHE. It isn’t too late. Although, if you get an EHCP and decide to continue to EHE, the LA doesn’t have a duty to provide the provision in the EHCP. A very small minority get a small personal budget for EHE, but that is very rare and mostly limited in value.