To ask for positive stories if you or your child has been anxious and out of school?

[BeethovenNinth]

I’m really needing some positive good news stories!!

i have posted a few times about my eldest DD. Affected by lockdown school closures, and then just never settled at high school, developed eating disorders and had a kind of burnout breakdown and dropped out of school. We have fallen between many cracks - not bad enough for CAHMS other than once, no help from school, tried a few counsellors. Ultimately it’s been time and talking and removing pressure.

we are two years in and she is doing ok. She still has disordered eating but is healthy with better self esteem and body image. She now wants to go back to school. I do not think she will cope well with this but her story constantly surprises me and she feels ready. We are very close and she speaks to me. I have moved from parent in control from when this started (age 12) to trying to let her feel she has some control. She knows that her mental health and eating is my red line so that if she is too anxious to eat, I will then step in.

I have had to give up work. I feel many days like I am wading through treacle. Has she eaten enough, have a I got her out the house. I have other kids and animals to care for. I’m just bust with it all, friends largely don’t understand. DH doesn’t get it - lovely man - just doesn’t get anxiety and MH issues.

we are making progress. But where to from here. I have very dark days when I can’t see her having any kind of normal life. Other days I think she is doing well and wants to get back to an education. She is kind, intelligent, and thoughtful. The kind of person who will do the right thing. No desire to rebel. She has one or two friends she messages but hates seeing anyone socially. (This is also new - very sociable until her burnout). Happy in her own company, brilliant relationship with siblings. She is happy in the house and laughs and sings (again).

does anyone have any positive stories of maturity and time helping?

ps neurodiversity? Who knows. Perhaps and perhaps not. But she is adamant she doesn’t want to discuss it and isn’t so it’s a moot point. She was a completely happy and content child until High school. No meltdowns or issues.

It is great that she is wanting to go back to school. If you suspect ND I would recommend getting a diagnosis since it can help being within the SEN system at school. (That said, our kids were accepted into the SEN system before getting diagnosis confirmed). DD is treated differently by teachers where we have asked - eg not picked on randomly to supply answers in class, which makes her anxious (asd and probably adhd).
Also for all our kids, the ND only made itself known at adolescence, although looking back there were some quickly behaviours that when they were young.

You have done incredibly well to get to this stage. Make sure you have support for yourself whether it’s friends or a therapist, it’s a lonely road if DH can’t engage. My DH doesn’t get it either - lovely man, probably asd. Just saying!

My DD missed all of y11 in covid. But made it through 2 years at college, is just finishing a 'gap year' still working on mh plus work experience, and is returning to college next month.

Sounds like my DD, diagnosed with autism this year. Also suffers terribly with anxiety. You need to work with the school closely (amd I've found I've had to be a squeaky wheel). Negotiate a very reduced timetable to start, perhaps just sitting in the pastoral room for a lesson then build up gradually from there. My DD has been doing a reduced timetable for some time. It's still very difficult but she does go most days.

Burnout is very common with autism. I would try to get her referred for assessment. There are long waiting lists so by the time it comes around she may be more open to the idea. There's not a lot of support available for kids post-diagnosis but if she is ND there may be different types of support available for further education and in the workplace in the future.

Thanks. I suspect more ADHD as she forgets to eat but that is also part of the eating disorder. How much trauma manifests itself as neurodiversity? She found post lockdown very hard - in Scotland masks were used in classrooms for months and she struggled. She won’t discuss the concept of neurodiversity with me - says I am obsessed by the label and that she doesn’t see herself that way.

school finally woke up to our plight last term and is being vaguely helpful (1.5 years in!) and so know that if we get her back, each teacher will be well warned in advance that even getting her in the classroom will be an effort

i just so hope for good news longer term stories that she might one day manage a job and a life

I am DREADING the return to school. It's next week here in Scotland

Found with my DD that telling her it was her choice, her decision was the way to go but as her parent I had a responsibility to make sure it was the right choice.

Therefore we would do as she wished as long as she promised to talk to me if she was struggling and would engage with me if I felt there was a problem.

Re poss ADHD, if she doesn't wish to discuss it, you'll never get a diagnosis but you can put things in place to offset some of the issues. Eg, 2 nights a week, comfort nights. She comes home, does the bare minimum that she needs to, eg gets showered and into pj's, eats dinner. Then she just does as she wants. That might be laying in bed, mindlessly scrolling tiktok. It just gives her chance to decompress and process what's happened over the last few days.

Please also consider if PANS PANDAS is part of the picture for her too - the PP UK charity website has information. It can develop after any common infection and can include anxiety, ARFID and so on. Often not picked up on.

Thanks quarter I know. It was my first thought too. I did some private tests that suggested it wasn’t that. I’m still scratching my head about it all though. It seemed to come from no where and I’m not sure it didn’t start after Covid itself. It was like she changed neurologically overnight

This was my dd now on her way to recovery.

Refused school last year she 16. Already diagnosed ASd. Had very supportive psychologist who said she was in burnout.

We got an EHCP.

Then an ADHD diagnosis. Medication was a game changer. 18 months out and she’s recovering and rating to go.

Its been a dark time.

She refused diagnosis at first. This indicates she needed it even more. I paid her, and we were on our way.

I have a positive story. My DC was out of school in adolescence through anxiety. They gained qualifications and have coped well at university and in the workplace. Maturity and time do have an effect but partly because you have taken the pressure off and are providing support and understanding. Your DD is doing really well, as are you, despite the toll the situation takes. Do get some support for yourself if you can; it is a hard road to travel and most people don’t understand. Or, even worse, can be judgemental. We had very little input from CAMHS and there was no assessment for ND, although it is a possibility. School weren’t great unfortunately but we didn’t ask for any special consideration, mainly due to DC not wanting to stand out. My DC is an amazing and very special person, who I truly admire for what they have come through. I think it is important not to lose faith in, or sight of, our child’s abilities and personal strengths, just because anxiety is present and causing problems. Building on those strengths can increase confidence and resilience in managing anxiety. I wish you both well for the future.

Glad you are PANS PANDAS aware. Immunologist says it was triggered by COVID and strep for both of ours.

I had a similar experience in my sixth form years. For me it was hormonally triggered – it came on almost overnight after I had an ovarian cyst removed. Coming off the pill helped a lot, and I still can't take hormonal contraception. It might be worth looking in to for your daughter. My experience is that it is easily and readily dismissed by medical professionals but can be extremely damaging.

If it comforts you at all, I went from barely being able to leave the house to getting a First at university and going on to have a good job and a family etc. The only other time I've had serious mental health problems was after the birth of my daughter – again, hormonal. I even coped with the sudden death of my DH, something my parents could NEVER have imagined me doing. The disordered eating hasn't gone away, but it's much more under control now.

Sending you and your daughter love and solidarity.

ds2 was out of school for years and rarely went out of the house due to anxiety. He got his GCSEs and A levels with the help of home tutors and amazingly he has recently completed his first year away at university.

GD missed two years of school. Got an EHCP and attended a special school. Got 6 GCSEs and has just got a good BTEC and is going to college to do her degree.

Thank you. Some of these posts made me cry. I have found all this so incredibly isolating,

Just to add.

Mine dropped out of school in March of Y12. She’d gone from great GCSE’s to nothing. She would have sat her A levels this year.

Shes managed to get herself on a foundation degree at our local redbrick. They have certain reasons for a foundation course. Illness is one of them.

14 months ago she was self harming and refusing to leave her room,

She researched contacted and wangled her way onto a pretty impressive course from nowhere.

Ive been in the depths and its not over yet. But she’s made huge huge strides.

Mine started y7, by January they were barely attending. They were dark times, lots of anger, barely sleeping, wetting the bed, taking it out on siblings. It was tough. Diagnosed Autustic, ended up deregistering from school. Did some online learning, took time to figure out how they learnt best, took a long time to heal and smile again. Going into year 10, starting 14-16 course in September at local college. A year ago I would have said no way.

It's been a tough ride, we tried lots of things, lots didn't work but we kept on going. We learnt as we went along but we put our son in control gave him options but spelt out consequences for these, both good and bad, made him responsible. It's taken time but we are all now in a much happier place and I now see a much brighter future.

I love that your daughter is happy and sings at home.

Online school and a local charity were fantastic (camhs, well they were crap) and made a big difference to us. It's tough going but sounds like you are a brilliant mum, make sure you take time for yourself to as I don't think people can appreciate just how hard and intense it is.

I've been tutoring individuals and small groups in a local secondary school under the governments "catch up" scheme for the past few years (basically since COVID). I've worked with quite a few students who have been out of school for various reasons, some trauma, some anxiety, some SEN, and some with anorexia, and other issues. I've seen lots of ups and downs, and some have ended up needing more specialist provision. But I have seen a couple of remarkable recoveries. I have seen students come back from serious mental health problems and return to being fully integrated into school life. I can't guarantee that it will work for your daughter, but I do know that it's not impossible because I have seen it happen.

My positive story is ongoing and has involved some tough decisions and stuff happening but it's going ok .. my DD went through Camhs for anxiety and non attendance. Turns out she was indeed Autistic. Camhs then wouldn't help her because they said autism wasn't in their criteria (?!) and she was school 50% . She was the Covid GCSE year , had to do an extra year of college - but actually that was ok - she needed it tbh due to the pandemic and loss of friendships . MH problems continued but she miraculously left college with 2 good A levels last year . She's 20 and working PT and she's still getting there .
I do wish you the best - however , my DD is in a good position with qualifications but there's a long way to go for her into adulthood. Se needs to think about next steps . I couldn't work more than minimum PT for years but things are better now than they have ever been . It will get better honestly but yes it's very isolating.

Please read this:

Emotional Based School Avoidance (EBSA) is a term used to describe children and young people who have difficulty attending school due to emotional factors. This can lead to prolonged absences from school.
Some risk factors that can contribute to EBSA include: Difficulty managing and regulating emotions, Low self-confidence or self-esteem, High levels of family stress, Relationship difficulties, and Academic demands.
Some ways to respond to EBSA include:
Recognizing feelings and empathizing
Consider a time when you may have experienced a similar emotion and help the young person feel you understand their emotions.
EBSA can also involve developing and implementing a structured plan that addresses the identified needs of the child or young person both at home and school. This plan can involve the child, family, school, and any involved professionals.

https://schools.westsussex.gov.uk/Page/10483#:~:text=Emotional%20Based%20School%20Avoidance%20(EBSA,in%20prolonged%20absences%20from%20school.

Thanks moll

im in Scotland and it’s impossible to explain how disinterested everyone is. I was at the GP again last week (as she stopped eating due to stress of trying to go school). We aren’t eligible for any cahms help, nor GP help. School doesn’t care. Social services isn’t interested as she is safe. I just don’t know where to go to get help. It’s like the education department in Scotland is broken!

so I continue to battle on largely instinctively and needing hope!