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Lost in the system

Kentron5000

Apologies if this gets a bit ranty. I'm largely at my wits end and I really don't know what to do next.

We noticed our child might be neuro-diverse towards the end of Primary School. The signs were probably there sooner, but they're the only child I've really known and they always reminded me of me ( spoiler alert: I probably have ASD myself).

Started process to get formal diagnosis in September 2019 (when in Year 6), naively thinking this would kick in before secondary school.  We got to Triage stage in March 2020 when the bottom fell out of the world. Finally managed to have an online assessment in July2020 where it was just confirmed what we already knew.  They might have autism.

Secondary School started in September, but the school refused to include them as SEN without diagnosis. That, coupled with them starting period, and the whole Covid backdrop led to a severe decline in Mental Health.  Panic Attacks, Self-Harm, Suicidal thoughts and developing a severe sensory reaction to eating/breathing which they term Misophonia.

We finally get a proper assessment in April 2021, it took longer as our child would refuse to use Teams/Zoom and so we had to wait for CAMHS to start face to face sessions again and a few months later we get the ASD diagnosis - a mere 21 months after starting.

CAMHS referred them to School Cluster Pastoral Care (and that alone)... the school said they didn't subscribe to that but would have their own in house counsellors from next school year.  Given there was only 2 months left and much of that was in lock down - we let it run.  We did speak to CAMHS about extra support but as far as they were concerned they'd made their diagnosis and we were discharged.

To coincide with Year 8 starting we paid for private CBT. It's cost us a fortune, but they really help - if only as a reset button for the week.

Across Year 8 and Year 9 (where we are now) school support has been woeful. We have meetings, we talk about what support our child needs. The teachers nod, they agree, they sympathise - nothing changes. We've had cases where my child self-harmed in the middle of a lesson, was taken out by the teacher and threatened with isolation and nobody spoke to us about it. I complained and didn't get a response for 4 days and when I did get a response they said they didn't know anything about it.  They are seemingly trying a "tough love" approach, reasoning that these are cries for attention from our child. It's such a misguided approach, and so far off the mark, that you'd think it was a plot line in a dark comedy - except the reality is that you're watching a school gradually add fear of authority to an already long list of anxieties our child has to deal with.

Meanwhile the self harming is getting worse and we've had a suicide attempt.  With CAMHS washing their hands of it and School unable to support we try GP.  GP refers us back to CAMHS, we had a new CAMHS assessment in August 2022 (after 9 months of waiting) and are still waiting for the results of that 3 months down the line.  

Effectively we're 3 years down the road, watching a sweet & intelligent (but neuro-diverse) child turn into a teenager with serious mental health concerns that's failing at school and spending al day every day crying and looking for sharp objects (obviously these are kept away as much as humanly possible).

I think part of the problem is that they're in the terrible position of needing help, but not a lot of help. Of acting out, but not acting out too much.  Struggling with lessons, but still getting a passing grade.  They're easy to ignore but they need help so much.  

If I, as an adult, walked into a doctors surgery and spoke in my childs words as if they were my problems I'd be offered near immediate counselling and prescribed medication. Because it's a child it's somehow okay and normal to wait years and years watching their life slipping away and wondering if they can ever recover.  It's so heartbreaking.

I feel lost in the system. I have no idea what I can do other than sympathise, hold them (until my breathing causes them sensory harm and they have to leave ... god that makes me feel bad) and tell them that it will get better (will it?).

The only options I can see are;

1. Go hard on the school.  Keep at them, keep complaining, try to involve OFSTED (although I don't think they can do much).

2. Complain through NHS.  But I don't think we're being unfairly dealt with comparable to others - it feels like the whole system is on the brink of collapse. So I don't think a complaint will achieve anything

3. Change Schools...  but their friendships are so important to them (although that's this months friends, friend groups and social interaction have been a constant source of depression and turmoil)

4. Go Private for Mental Health Care ...  they seem so few and far between with waiting lists that will take us well into 2023 and 2024 ... and the cost just feels unrealistic in the current climate (Not that I want money to be a barrier)

As I said before, I'm probably on the spectrum myself, so dealing with all these parties doesn't come easy - but I'll walk through fire if I have to.

I don't know, part of this post is probably more therapeutic for me - giving me the opportunity to scream into the abyss.  But if anyone out there has any real advice I'd love to hear it.  Hell, I'd be happy just to hear a few "Me Too's" and "I understands".

  • Thanks all.  A lot to digest there.  Particularly interested in the existence of PALS and IPSEA, so more research needed there I think.  But you've all agreed with, what in my mind, was the immediate course of action needed - to tackle the school issue.

    To answer on the offer of a new school.  Yes we've broached it but it's hard to gauge their true feelings - I think to them it's a very abstract idea and they can't work out what it would mean long term.  Some days, the bad days, they'll plead to go to a new school and other days they'll tell us how important their friends are and how they'd die if they didn't have them.  

    There is a 14+ school in the city centre (just over 10 miles away), which is more laid back and is all about individual teaching, which they could join from Year 10 (so all kids would be new), but it's very hard to get into. We're going to an open day and will check it out. At the moment I think it's the best solution whilst encouraging them to keep their old friendships (which is a lot easier with Social Media than it was 30 years ago).

  • I understand this. My little sister is still at primary and we get a lot of what I call 'false school promises' where agreements and plans are made but then they never follow up on them and when mentioned later on the school can't remember them. So infuriating. Schools don't seem to care at all these days which is damaging for the kids in the long run.

    I think you should definitely go hard against the school, for your child and the other children as well. This school is bad and they need a kick up the backside to make them take notice. 

    You can post and 'scream' as much as you like here. I hope you can get things sorted and it gets better for you all.

  • in reply to Fibonacci Squid
    Fibonacci Squid said:
    If someone is so desperate for help that they are harming themselves to get the help, you should probably give them some help.

    Well said!

  • Hello, I am so sorry that you and your child are being put through this ***. The CAMHS pressures will always be written off as waiting lists, currently being on a few myself and having been on many in the past I am all too aware of how frustrating they are, but you should still check up. Unfortunately in this system it is sometimes those that shout the loudest that get help first. If you feel like things are getting worse and you don't have another option, PALS is there for a reason.

    The school on the other hand is utterly infuriating. And I'm going to be very harsh in my recommendations because they are failing your child and probably other children and you can choose to take as much or as little from them as you want.

    1. I know you've had a lot of meetings, but do you have plans in writing. Writing is very important because then you can hold them to things, or at least point out when it isn't followed.

    2. Building on 1. Have you considered applying for an EHCP? While it's another long wait, there is then a legal impetus to get it done and your child has the right to have an assessment done. Something to be working in the background while you try and tackle the school head on. https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help 

    3. The actions that your school made over a self harming incident in class is a safeguarding incident. A serious one. It needs to be reported. Your school should have a formal complaints procedure that is listed on their website. Follow it to the letter. If you think it isn't being taken seriously you can complain to DfE. If I had pulled something like that teacher and not followed all the necessary reporting channels (which is the optimistic view of why they 'don't know anything about it') as my work as either a technician or volunteer I would never have been allowed to work in that school again and possibly not any. Here is a helpful link about making complaints https://www.gov.uk/complain-about-school/state-schools 

    4. Your school may also have a separate form to complain about SEN provision. Or they may say to go to your local authority. Consider both.

    5. https://www.gov.uk/topic/schools-colleges-childrens-services/special-educational-needs-disabilities Keep throwing paperwork at them until they admit they haven't followed best practices? I'm personally very fond of this one, but it takes a very long time and can get quite combative, but I also have no idea of how much of your and your child's rights you understand so I feel like this is a good starting page. Not all will be applicable, but enough will for it to be hopefully useful.

    I understand why you are reluctant to move your child's school, but I'm interested in whether you've offered the option to them and what they think of it. I'm also quite frankly wondering if talking to your GP about getting some time off school may be an idea? I'm not sure what your capabilities are to keep them at home but if your child is successfully self harming at school with the knowledge of the school then they are not being kept safe. 

    Also just because I really hate the 'cries for attention' line that gets applied no matter how wrong it is. If someone is so desperate for help that they are harming themselves to get the help, you should probably give them some help.

    This was a long one. I'm happy to do more form and procedural looking up if you would find that helpful, I love procedures and policies, and I also like pestering people to follow them. Our education may be failing but it's not failing that much, that's just your school not following best practice.

    I wish you and you child the best and hope you can find a way to manage this that works for both of you

  • I can sympathise with struggles. Our worst experience was with Primary. This was especially with meetings where things were agreed and not followed up.

    I also agree that it can be difficult being autistic personally at times, but it also makes me more determined.

    From experience, it is important to put things in writing. I tend to copy in head of year, SENCO etc. I have challenged the use of isolation. In my opinion and from my son's experience there have been times when he has requested this to get a break from a challenging experience and school have said it was not applicable. Sometimes there is a need for a quiet place in Secondary, but nothing available.

    It is worth looking at school policies. These should be on the school website. The experience you mention of self harming is concerning as I would have thought there should have been a safeguarding concern and a record have been made of this event.

    You could also contact the school governors.

    It may help you to have some support. I am wondering if IPSEA helpline may be able to advise you or others may have other suggestions. You do need to challenge the school if they are not working on strategies to help. I am not sure if there are specific things that make things difficult where adjustments could be agreed. We also contact individual staff where there are issues in a certain subject.

    Regarding CAHMS we have called them if we haven't heard after a while. We have also been able to arrange an appointment where there were further challenges.