September is always full of those three little words that strike fear into lots of families across our nation (August for those in Scotland): Back To School.
For many children and their families, this is an exciting time. The chance to enter a classroom full of peers and teaching staff and talk animatedly about what you've been getting up to over the summer holidays can be a fun experience for some.
Sadly though, for far too many children, school causes increased levels of anxiety and stress. Not Fine in School is a website providing support for families with children experiencing school attendance barriers. Some parents have been told by staff that their children are 'fine' in school... but at home the children show clear signs of school not being 'fine' for them. There is a corresponding NFIS Facebook group with over 44,000 members, pointing to the fact that these are not isolated, one-off stories.
With this post I am restarting my Not Fine in School series; this is week 13. The words below were written by a neurodivergent individual, Chloe. They clearly show the impact of the school system due to a lack of understanding and flexibility. Chloe has been sharing her life experiences on her Facebook page Me Just Me and Instagram and I would urge you to show her some support over there.
Please follow the links at the bottom for previous posts sharing examples of struggles with the education system.
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***Trigger warning - SCHOOL TRAUMA ***
So this was me... very young, I left school just before I turned 7 years old! I left because I became a shell of a person... I was losing myself, I couldn't bare the pain of entering the building any longer, the anxiety build up, the constant misunderstandings, the gaslighting, the alienating and isolation I felt... I was so young and I should of never felt any of these things... and yet I did.
The last words in a meeting about me was "Chloe doesn't quite fit in, she's an anomaly! she isn't able to effectively transition back in to the classroom, out of the 5 children in our SEN group, Chloe is the only one we are struggling with, there is a PDA workshop booked but it isn't for 6 months time... we are not sure what to do with her.... have you thought about home education?"
That was the conversation held in front of me, it was wrong, shameful and a lot of other things! Quite rightly so, my mother just got up looked at all the staff, shook her head and then we left. We did not go back!
My parents had just bought a flat so I could go to this new school where 4 days out of 5 I was in a SEN room. There was two teachers one that was caring and one that was well...not or at least to me didn't seem to care. The promises made were broken, they got funding for me yet I was not seeing any of that. The SEN room days went from 4, to 3, to 2, to 1... then it was all about integration and getting me to adapt. When that didn't work, I was placed in this open corridor space... alone with a book of my choosing, with a monitor person.
I struggled with the rush at lunchtimes so was allowed to go 10 minutes early with a friend of my choosing, until other children said it was unfair, so I had to have a different child each time (wether they were my friend or not, wether they were nice to me or not) as I should accommodate them and they were helping me and by doing so they get to understand me... that was how it was explained to me! An autistic six year old told that my needs were expected to adapt to others on the basis of their jealousy because I got extra time so I needed to be fair to them. It turned lunchtimes into anxiety, a demand to choose who went with me, if they would be nice to me. Play times were the same...
I could go on.... in the earlier years in my previous school, where I was assigned a teaching assistant, who had an autistic child yet because I was so different to her own I was being manipulative and disruptive, I was supposed to go home 10 minutes early as I struggled with how busy it was collecting your coat and bag, I would usually just run out without until it became apparent so I was held back till everyone had left and it was just the naughty children and me left to collect our things, where the children were mean.... I remember my mum running in and just grabbing me away from them... she could see it from the school gates... yet the teacher assistant did nothing!
I have more stories they go on and on, when I was forced to wear arm bands at school swimming when I had a swimming vest that kept me afloat, something my parents got me to help with my sensory needs and was approved, but yet because other children complained I was told I had to be like everybody else and have the arm bands instead. I was told off for crying and when I was collected I was still crying.... again my mother just grabbing me away from a teaching assistant telling me off to stop crying!
These are memories that had stuck with me and despite being out of mainstream education longer I still carry them, I no longer have the huge resentment I had, but I still question why my needs were not adapted to, given how I had an early diagnosis and countless communications from my parents.
My mum took a decision that had a huge financial impact on our family, she put on hold her business and home educated me. I understand not everyone can do this but for me it was the only way, another school would of just crushed what was left of me. My mum said the fight is just too big! she could exhaust herself like she had done so before fighting to get just fundamental help, help that should be so easily accommodated with communication and adaptable solutions but it would mean she could lose me in the battle and whatever obstacles that comes in our way, it doesn't matter because she will have me!
School trauma caused lots of issues, such as separation anxiety for many years, eating problems; food I used to like I associated with school, friendships and trusting people especially adults. Swimming and water... still cause issues now.
It took a whole year for me to do things... I never wanted to leave my home, I felt safe at home. A walk to the park, a visit to the quiet art gallery or a cafe that I liked, would be all I could do on a good day and we barely went out.. That would be for an hour at most, as I would feel the anxiety again and need to return home, to my safe place. It took nearly 2 years for me to just be able to do all the things many people just take for granted. I needed so much time, trust and patience for that to happen. I had that!
Just think, if the understanding, communication and adaptability was there how I wouldn't of had to go through that, who knows if my tics and sleep and eating would of been way better. Just think if that understanding, awareness and action was taken how other children who have similar stories may not have suffered. Something needs to change!
I am lucky that I could be home educated that I left a place that was causing too much trauma and upset. But I shouldn't of had the trauma in the first place, if the understanding was there! This is the message that needs addressing why should children have to go through such turmoil, why should their families... to then take on education themselves because there is no other way?
Thank you for reading. Over the coming weeks there will be more examples of families being failed by the system. They won't all be the same as this one but they will all share common themes. It's important to remember that most of those families caught up in the system currently will not have the time or energy to be able to write about their experiences just now, so these will be only a very small representation of what is going on out there in the arena of education.
If you feel up to sharing your 'not fine in school' experiences please email me at stephstwogirls@gmail.com. This issue of the outdated, failing system is huge and should not continue to be brushed under the carpet. I understand how difficult it can be for families to talk about this topic - for some there will be a need to stay anonymous, which is totally fine.
For any parents and carers needing help right now, I highly recommend the incredibly helpful Not Fine In School website (notfineinschool.co.uk). There are many supporters behind the scenes and in the linked Facebook group who have been through difficult times during the school years. Plenty of knowledge is being shared which could make a real difference to other families. If the system is not fit for purpose we need to shout that out loud. Please help, by sharing your story or sharing this post to get the message out there.
For those who are keen to help make a difference, I also suggest getting on board with Square Peg. They are making great strides in terms of raising awareness across different media formats and also with legal challenges around attendance policies. A review of their book can be found at Square Pegs: Inclusivity, compassion and fitting in (Book Review).
For the other posts in this series please click the links below:
"My daughter said school felt like prison. She felt six hours a day of constant concentration was too much – it literally frazzled her brain. Since deregistering our daughter her daily headaches have disappeared. She sleeps better as she isn’t worrying about the next day."
"We have been incredibly lucky with the primary school she was at. They supported her as best they could, accommodating her needs as far as possible and being flexible with her school attendance. Even so, she found the whole experience overwhelming and ultimately it impacted on her life in significantly negative ways.
Just 48 hours into Year 7 our home education journey began, not unexpectedly!
“Keep pushing her until she has a breakdown. We need to see it happen.”
Those are the words our SEN caseworker said to me when I told her my daughter's secondary school placement was unsuitable."
"At the beginning of Year 6 he started to school refuse and had a high level of separation anxiety. Over the next three months we struggled. I made him go to school, sat in school with him for hours, came back at set times to show him that I would come back, but nothing helped. His behaviour was very volatile and the school were struggling to cope. When I woke him up in the morning his first words were “I'm not going”. He would refuse to get up, or get dressed, would be very tearful and plead with me not to take him. I dreaded every morning as he did."
"She was given detentions and was sanctioned because of her attendance. I always complained and they stopped it but in every incident, more damage was done. She went to 70% attendance. I reapplied to CAMHS for crisis intervention as she was depressed and talking about not wanting to exist anymore. In December 2020 we were given medical intervention and I pulled her out of school. She is now in Year 9 and school have arranged for her to be on a part-time timetable."
Week 5 of Not Fine In School - Eliza Fricker, Missing The Mark
"As families we have explored everything to help our children to manage to go to school and yet the pressure and the anxiety of the school day are overwhelming for them.
This leads to enormous guilt on our part as we have failed to achieve one of the most basic parenting exercises- to get our children to school (we are also appalling at any textbook bedtimes too, in case you need to know).
So we live for many years as parents, as mothers, as women, feeling the guilt and judgement that we have failed.
We lose friendships and family who struggle to understand, our relationships become consumed by this, our careers often end, as we cannot manage it all."
"I was on a knife-edge the entire time he was at primary school, waiting to get that call to come and calm him down (the perils of being a freelancer, working from home) or for the teacher to beckon me over at pick-up time to talk about the latest ‘incident’.
The school told me outright that he wouldn’t get an EHCP and that I could apply on my own, but it probably wasn’t worth it. Undeterred, I sought the help of a professional who could help me navigate the difficult system."
"As I said before, the SENCO at his current school is doing the best she can. But my son has been struggling in mainstream school since last September, to the point that he has already been temporarily excluded twice, and has only been in for a couple of hours a day since they went back in March. He has regressed against all his EHCP outcomes, and is spending what short time he is in school separated from the other children (too many aggressive meltdowns when with the class) - just him and 1 or 2 teachers in a room, doing their best to keep him happy and calm while he plays. Any attempt to bring in some sort of learning, even well-disguised, triggers his anxiety. So he’s getting no benefit, educational or social, from being there."
"I had been warning both the school and the local authority since the beginning of the year, about my daughters school anxiety, the sheer amount of effort, it was taking to get her to school was exhausting for both of us; and seeing her freeze at the school gate and beg not to go in was heart-wrenching for me, but I felt blamed by the school as if it was my fault, because she has a typical female presentation of autism, and an all too familiar story, where she masked in school and let it all out at home with Violent and Challenging Behaviour (VCB) in her safe space- the classic Jekyll and Hyde presentation.
When she was first awarded her EHCP a year ago, I wanted a specialist placement for her then, but her mainstream primary was named. I was told then by the Local Authority that she would have to “fail” at mainstream before they would even consider a special school placement for her."
"My son is nearly 10 years old and is a shadow of the boy he used to be. It breaks my heart just thinking about it. He started in a small village school at 4 years old. His older sister also attended and loved it. We started noticing he was having difficulties with other children that same year and was falling out with them on a daily basis. I was called in a few times to speak to his teacher about incidents that had happened but it was just out down to “bad choices” and, because he is so bright, they just shrugged it off and said he would grow out of it.
He carried on like this for a couple of years until he started in year 2 and the cracks started to show even more. I would struggle to get him out the car to go into class. He would jump away from the door as I opened it and sometimes climb into the boot and hide. The head teacher would sometimes come over and talk to him to convince him to come into school. Whenever this happened, he would instantly put on his mask and go with her but plead with me with his eyes. I spoke to his teacher about it but he just shrugged and said “he’s fine in school”. "
"From the very first full day at school our daughter struggled. She vomited every lunchtime pretty much as soon as the bell went; we were never sure if it was the bell or the thought of the dinner hall that terrified her. Very quickly she was vomiting before school and getting extremely distressed about going, clinging to me in the playground and screaming. It was awful.
Then one day after I left her at school she escaped and tried to follow me. She got out of the school grounds and into the road. Luckily a childminder we knew was standing on the pavement chatting and she grabbed her and phoned me. I wish I had taken her home that day and never taken her back but I did what society expects us to do; I returned her to school."
"The problem here, is that school still followed the reward, consequence method so the inconsistencies weren’t helping him at all. He managed to scrape his way through the reception year without too many major issues, other than the odd school fight. I was the mum who’d get called over to chat to the teacher at the end of the day. I loathed this, as I could see my son squirming next to the teacher as they talked about him making ‘poor choices’. His response upon leaving school was often ‘flight’, he loved the freedom from being outside of the school gates, and I was the crazed mum weaving in and out of other parents chasing him down the road. I mostly succeeded in suppressing the inevitable eruption and he saved meltdowns for the safety of home."
"After a long fight to see the paediatrician, our son was diagnosed with Autism (PDA profile) at the age of six. School put in strategies based on this diagnosis but it still wasn’t enough. We applied for an EHCP and during that assessment the Educational Psychologist advised a specialist setting, so we began our search for a special education school. However, as our son is a bright boy, specialist schools told us they could not meet his needs as he was not behind academically. So we were stuck between a rock and a hard place - mainstream schools couldn’t meet his needs and special schools were saying they couldn’t meet his needs. It was such a hard time in our lives, feeling our son just didn’t belong anywhere academically. We were so shocked by the lack of educational provision available."
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