A personal account about emotionally based school avoidance (EBSA)
By an ESPCF member
During her family’s most difficult time with EBSA, a parent carer in East Sussex kept notes of how she was feeling. With her and her child’s permission, we’re publishing it here in the hope that it will help others. This is of course a personal experience, and every child is different.
It’s not an easy read, but for this parent carer and her family they are now in a better place – as described at the end of this account. We hope by sharing this experience it will help other parent carers know that they aren’t the only ones going through this, and it is not your fault.
We’re incredibly grateful to this parent carer for sharing her story with us.
A very lonely journey no one seems to understand
Watching your child struggling with their anxiety causes a rise in your own stress levels, and so the cycle goes on.
You get that awful letter threatening prosecution. The fear of prosecution, going to prison and getting a criminal record is overwhelming and distressing. Yet it feels so unjust as you have not done anything wrong.
The guilt that you can’t fix the problem and help your child.
Constant daily battle and stress.
Traumatic for all concerned.
Conflicting feelings
You are split between the turmoil of your own thoughts and feelings, and the professionals’ advice you are forced to follow, as surely they know best – but does this actually help? You know how to help your child best and no one listens.
The ‘system’
You enter a massive learning curve of how to navigate the system and are shocked at how unsupportive you find it.
You buy books, attend courses and sit on social media absorbing as much information as you can so that you can help your child the best way possible.
Shame and judgement
The daily walk of shame in the playground.
Feeling judged and scrutinised as a bad parent. Even though you have two older children who have thrived in a system that suited them.
You become ‘that parent’ and you don’t want to be.
Disapproving looks. If only the people in reception just asked if we were ok, offered a cup of tea and an understanding ear. We’ve been through a long and heart wrenching journey to get through those school doors.
Those unhelpful “why don’t you just make them go” comments.
Exhaustion
The exhaustion from your brain having to constantly adapt and adjust your communication skills to avoid meltdowns and prevent further trauma to you and your child.
The hours spent negotiating, reassuring, finding solutions to problems and sitting outside school saying it will be ok when it’s clearly not.
You don’t sleep because you count the hours till you have to deal with it all over again in the morning.
Fighting for your child’s needs
Being told you don’t need an EHCP – an education, health, and care plan. So, you go it alone, you fight to get one, and still nothing changes. Your child still can’t go to school, not won’t.
Paying thousands of pounds to provide evidence your child has needs that need to be accommodated in the hope they will be met, so they can access an education and prevent further deterioration of their mental health.
You pour out your stress through emails to school as you need to validate the situation constantly.
You remind yourself constantly that the barriers to your child not being able to enter school are unmet needs. You want to shout “my child is not frightened to come home as I meet his needs”. If it was the other way round it would be a safeguarding issue.
He wants to go to school but he can’t.
Survival mode
Your stress rubs off on your child and your family. All involved end up in survival mode.
Your whole life changes when you realise we can’t do school.
You feel you are the only ones going through this.
You want to run away.
You agree to things just to get out of that meeting as you’re still in survival mode.
The unbelievable comments made
Does your son have asthma?
No, it’s a panic attack.
You paid privately for a diagnosis so you got the answers you wanted.
A GP’s comment; so little understanding it upset me greatly as it was not necessarily the answer I wanted, but one that I needed in order to get the help he required.
So you think he’s autistic.
A small primary school’s headteacher’s comment; you’ve already been assessed by CLASS , advised to get a diagnosis, and you’ve been on the waiting list for an ASC assessment for almost a year already.
It’s the law to go to school.
A comment made by a trusted teaching assistant, who was trying to get our son to get out of the car at school.
Why don’t you electively home educate?
A comment from another head teacher. I don’t choose this, I have to work. Also, it won’t work for me or my son; I’m his mum, not a teacher and he can’t even do homework. How am I supposed to home ed him?!
Remove all devices and make home boring.
Local authority staff member advice. We did as advised. It made no difference and we punished his anxiety.
Just ignore the self-harming behaviour and get them into school.
From a local authority staff member. The shock comment which stopped me in my tracks, made me laugh out loud and then feel empowered that indeed I knew best, not them. The wanting to complain about the comment but not being able to for fear of retribution. The fear she made this comment to others and the damage it could have done.
Empowerment
That moment you realise those professionals around you don’t get it.
The total disbelief that all the local authority will do is prevent provision at all cost by stalling and ignoring your child’s needs in the hope you will give up and electively home educate.
The realisation you paid thousands of pounds on educational advocates and evidence for no one to listen over and over again. And the local authority still has the stance there is no new evidence for this provision. And you can’t decide whether to waste more money if it’s of no value to helping your son.
The moment you choose to stop, take a deep breath, change and adopt a different way to do things.
We finally made a choice to stop what we were doing. It was too damaging for all concerned.
You want to shout, “they are unwell and unable to go to school, not truanting”.
You decide to put their mental health first, not their education.
You give up work and tighten your belt.
Acceptance and reconnection
You accept you don’t fit in with parents and friends at school now. You most importantly reconnect with your child and regain their trust.
You rearrange your priorities. School was not the answer to gaining an education and we learn to let go of the guilt.
Like going through a grieving process: denial, anger, bargaining, depression, acceptance.
You remind yourself that qualifications do not hold the key to a happy, successful life.
You remind yourself that the relationship with your child is far more important than school staff and attending school.
You drive past school and get palpitations and feel sick as your body goes back into survival mode from those bad memories.
Recovery
The desperate need for life to become more relaxed, predictable and connected again.
The priority changes to rebuilding the lost trust, making him feel safe again and giving him time to heal from the trauma school caused.
The empowerment of making your child the priority and that it’s ok to choose a different way to learn.
You finally get time to process what you have all been through as a family.
A journey you would not wish on anyone. Damaged by other people’s actions, lack of knowledge and support available. The 10-foot brick walls you have to constantly knock down to protect your child’s mental health. A journey more difficult than having a child on chemo for three years. A journey that’s not ended yet as you know your child will be manipulated back to formal learning that they just can’t cope with, as people still hang on to the notion that attending school is best.
And now…
Looking back, there were some good people out there, within the local authority and the school setting, fighting our corner as best they could. But ultimately it was a system in which our son was never going to ‘fit’.
Several years have passed now since he set foot inside a school. We fought the LA by appealing every step of the way to assess for an EHCP, issue an EHCP, and to agree to provide EOTAS (Education Otherwise Than In School).
He currently has the interim service provision, doing a couple of hours of online self-directed learning and indirect mental health support, again online. This provision meets his needs as he has a PDA (pathological demand avoidance) profile of autism. Now 15, he’s starting to access the outside world a bit more at times and he regularly chats with old school friends online. He’s happy in his calm, consistent and safe environment. He no longer feels he needs to mask to survive.
Recovery from the trauma that school caused has been a long slow process. He’s a beautiful soul to the core and has the most wicked sense of humour. We very much live in the now, however the future looks bright whatever it brings; but I doubt it will involve setting foot inside a school again.
If you are going through EBSA with your child or young person, or have been through it, and would like to share your experiences, please get in touch.
Information, guidance and support
East Sussex Parent Carer Forum worked with the local authority schools mental health adviser and other representatives to produce guidance and resources for families who are experiencing EBSA. The specific sections we developed are: listening and talking with your child, working with the school, and looking after your own wellbeing.
Click here to read the parent carer EBSA guidance.
This guidance will be reviewed in the coming months, and ESPCF hopes to have two parent carer representatives involved in the steering group which will be overseeing this work.
You can also find information and advice here:
NHS – Every Mind Matters (advice and links to further support)
Not Fine in School – a resource for families experiencing school attendance barriers