Time for another post in my Not Fine in School blog series. These posts attempt to highlight some of the issues around school attendance, and aim to start conversations around what is or isn't working within the school system. Sometimes there is good practice to be shared but more often than not, we hear of inflexibility and a lack of understanding of how to help children who are struggling.
Many parents are told that their children are fine once they are in school. But it is often the case that children who seem fine once they have been forced into school may well be masking and internalising all the stress. Forcing children into school and into an environment which does not meet their needs is not going to help them overcome anxiety.
Children and adults alike are affected by the simple fact that our education system is at breaking point. For too long, little thought or attention has been given to those for whom the mainstream system does not cater. 'Inclusion' is a term bandied around to try and make everything sound better when in truth what often happens is attempts to fit square pegs into round holes.
The child in this week's story was clearly struggling from the very beginning; school was not the right environment. How do we fix this?
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Our story is a long one but basically our daughter was never "Fine" in school, or pre school or college.
When she tried to stay full days at pre-school she couldn't eat her lunch, and she kept going to sleep when the morning children went home. The staff just assumed she was tired but I realised she was shutting down because she hated it. She never did more than three morning sessions a week after that so she was not at all prepared for full days at 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. From that day she was met on the door by a Teaching Assistant who slammed the door and shook it to show us it was locked every day for the rest of her Reception year. She had a TA to meet her on the door for the rest of the time she was at that school and she ate her lunch in the corridor or the classroom. But the school maintained she was "Fine". She really wasn't and we had so many incidents of stress. Sadly this trauma has stayed with her.
Socially she seemed on the surface to be managing but I realised that she generally only played with children who would follow her lead. She "policed" the other children, telling staff if they broke rules, which of course didn't make her very popular. She hated noisy parties and wouldn’t let me leave her, often refusing to go at all. We never forced social stuff because we could see how difficult she found it. The school maintained that she had lots of friends and was very popular but when we removed her she never once asked about these so called "Friends".
She was diagnosed as autistic at age 9. It took them three and a half years to assess; we were sent from pillar to post because they didn't understand her presentation. Now at 18 she has about ten different diagnoses so I guess it was no wonder the professionals were scratching their heads.
The head teacher (who was also the SENCO) made it very difficult for us to get through the assessment process. She tried to blame me, and on one form for CAMHS she wrote that she "couldn't substantiate mum's concerns". Eventually a locum psychiatrist decided to do a DISCO assessment and the scoring indicated that she had "Atypical" autism. The psychiatrist said no one would know what that was, so she diagnosed ASD.
Ultimately anywhere away from us and home was extremely scary for our daughter. The vast majority of school people did not understand that the whole environment was so difficult. Never having a single trusted adult away from home, when she was at school, meant that she was in a constant state of fight, fright, freeze at school.
We moved her to another school after the diagnosis but the trauma was too deep and she was no better there. Some of the staff were kinder, but that was all really. We started our battles with the local authority to get a Statement for her but to be honest, apart from creating a whole lot of stress, it didn't help. The school system had failed her before any useful support was put into place.
Secondary transfer was the final nail in the coffin. Promises of support and reasonable adjustments never materialised. She developed selective mutism and was completely unable to access the "help" that was on offer because it all required her to tell someone she was struggling.
It was awful.
We did three tribunals in two years. She was falling apart and had pretty much stopped going to school before the last tribunal. We won and the Local Authority had to issue a Statement, but it was too late. We told our daughter we were going to stop sending her to school and then I lost my job. So we deregistered and started our new life.
After one pre school, three schools and one college all failed to be able to help our daughter feel safe we finally managed to get a small personal budget. This was to get some support for our home education programme which had been successful for the whole of secondary age but which had been self funded.
She now has three adults from outside our family who provide support and who are working really well with her to build confidence and self esteem, because these sadly completely disappeared after failings at a mainstream college.
She is a talented musician and photographer and with the support of a charity called Darwin Dogs she is training an assistance dog to help with gaining independence.
When I am asked about what could be different now for autistic children in schools I say that school staff need to learn to recognise stress indicators. The child in a class who is chewing their sleeve or eating their buttons or their pencil is not OK. They are "Not fine in school" and if the parents are telling you they are not fine, then do something.
School and college staff are responsible for our daughter’s trauma, not me, not her dad or her sisters. School staff did this to my child and it still breaks my heart every day that I didn't remove her from that toxic environment sooner.
School is not for everyone and society as a whole needs to see this and stop blaming families who really can't continue to force their children to attend and watch them become more and more traumatised day after day.
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With thanks to R K Tenacious for sharing their experience. There are many more examples of families being failed by the system. Not all exactly the same as this but all sharing the common theme of school not working. 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, so what I'm sharing here will be only a very small representation of what is happening across the country.
If you feel able to write about your family's 'not fine in school' story please email me at stephstwogirls@gmail.com. I understand it can be difficult for families to talk openly about this topic - for some there will be a need to stay anonymous and that is fine.
For any parents and carers needing help right now, I highly recommend the incredibly helpful Not Fine In School website (notfineinschool.co.uk). Square Peg is an organisation making great strides in terms of raising awareness across different media formats, and also looking into legal challenges around attendance policies. There are many supporters behind the scenes and in the Not Fine In School Facebook group who have been, or are going, 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 the other weeks in this series please click the links below:
All of these reports are heart-breaking, so many families affected, so little being done by the people who could make a difference. Keep on fighting everyone and help Steph get the message out there.
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