Already we are up to week 18 of the Not Fine in School series - so many stories of children and their families being failed by the education system have been shared and there are more to come. A bigger push from the Government to enforce high attendance levels is not helping those children who find it difficult to attend school because the environment is not right for them, or because the teachers are not able to teach in the way that child needs to learn.
My passion for talking about this subject has of course stemmed from having a daughter who has spent several years as part of that 'Not Fine In School' cohort. I want to speak up about this issue to help highlight the cracks in a system that will never get better with the aid of sticking plasters.
I think it is important to recognise that it is the system at fault and mostly not those who work in it. I have come across so many great education professionals who really do want the best for each child. Some of them are drowning in the system also, not able to provide the help they would like to. Some might be able to offer more help if they understood the system or the child's needs better themselves - the fact that Special Educational Needs is still only a tiny part of the teacher training course needs to be reviewed urgently.
This week's writer shares how she was made to feel useless as a parent, despite years of experience of working with children. Many parents of children who find it too difficult to attend school will have come across this kind of gaslighting and judgement - it seems like only a minority receive understanding and support.
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It Was The End, Not The Beginning
On the surface, it all went wrong in September 2022. That was the month that my 9 year old daughter only made it into school for one day. That was the beginning of an autumn term where effort after effort, strategy after strategy, approach after approach was suggested by school and by copious professionals. And it was the beginning of us not being able to deliver the result they wanted: improved attendance.
Now, looking back, it is clear that that was the aim – schools are evaluated on their attendance and attainment data, and our daughter was the anomaly. The experienced SENCO had dealt (extremely effectively) with anxious children and autistic children before. These children kept coming to school and were, at some level, able to access mainstream education.
Our daughter could not do this – and the assumption was firmly made that she would not, and that we would not comply with the advice. And what a lot of advice there was:
- Prepare her for exactly what would happen in advance
- Make visual timetables
- Repeat the same phrase in clear, straightforward language (e.g. ‘you will go to school today’)
- Use social stories
- And then that gradual approach of her meeting the same person outside school, closer to school, just inside school, further inside school…
Oh the well-meaning advice! Professionals, who work as experts with children with severe anxiety, told us to ‘just keep trying’ and that there would be a period of extreme resistance but then there would be progress. Our daughter would get comfort from our consistency and would eventually feel calmed and regulated enough to go with the plan.
But it didn’t work. Noises were made about how if the plan carried on not working, perhaps we should think about ‘elective home education’. By this point I was beyond the end of what little tether I had left, and – despite the fact I avoid confrontation at all costs – I shouted at the professionals in the meeting. My frustration was in the word ‘elective’…what part of that decision would be elective? We knew we couldn’t educate her – lockdown proved that time and time again – and we were realising she needed a specialist approach, which we couldn’t provide. And, most importantly of all, we were not choosing to keep her off school.
My guilt doubled, tripled, quadrupled…every day I felt worse. Because I am a specialist. Sitting feeling very small in an online meeting with a CAMHS professional, describing the benefits of visual timetables to me when – as a speech and language therapist, specialising in autism – I have been advising parents and professionals on using visual timetables for over 15 years!? Could I feel more like a failure? Feebly, we protested that we had used them – they had worked more effectively with our elder daughter, who is autistic, but our youngest would enjoy the novelty for a short time and then steadfastly stop engaging with them. Far from providing her with reassurance and consistency, they seemed to make her anxiety worse. Emphatically, I was assured that ‘I am mum’ and that is why the approach wasn’t working. Even more feebly, I protested that it had worked. I’m really good at using them, as a professional and as mum, and at putting them in place.
The approaches were not allowed to fail. There was no place in the system for a child for whom these approaches didn’t just not work – they caused her more distress. The only way the professionals could explain this was by blaming us – we obviously weren’t invested in the advice (we were explicitly told this). If we weren’t really Doing It, all the time, then how could it possibly work?
And gradually…our awareness seeped in. We were doing it. And we hadn’t just been doing it since September 2022, we had been doing the approaches for years. Ironically, they were right – we weren’t invested. Because the advice had not worked before, wasn’t working now, and would probably never work.
When she turned 2, and her separation anxiety increased, we prepared her, we had a good routine, we provided her with stability and predictability.
Between 2 and 3, as the transition between home and nursery caused her so much anxiety, I battled through meltdowns, being kicked, screamed at, and more meltdowns.
When she was overcome with toileting fear and constipation, we were patient, provided excellent visual books and got to know them with her, used all the anxiety strategies in the book and got her through that phase.
When she resisted getting ready for school, almost every morning since starting in Reception, we used visuals, routine, preparation, choices…all the tools of my trade that I knew back to front. Because I’m bloody awesome at using them!!
And when she was able to go into school as a keyworker’s child, over lockdown, I started the strategies up again and rejoiced in the tiny class size she was in, which clearly benefited her and helped her feel settled.
Year 3 hit, and the anxiety increased. Such a quiet, compliant girl at school – the epitome of ‘fine’ – she melted down almost every morning and every evening at home. There was no point going on about it, because no one would ever believe us. Out came the visuals, planning, preparation, social stories provided by the lovely SENCO. She also gave us a sensory box for her and lots of support around anxiety. By the end of Year 3, despite this support, she had to start school late and regulate with her class TA, every day. Some mornings she couldn’t make it in at all.
Following a highly busy, chaotic and dysregulating summer, and a removal of the later start time when she returned to school, it’s not such a surprise that she only made it in for one day of Year 4.
Because September 2022 was not the start of it all. It was the end of a long, long, painful haul for our daughter. As she grew, so did her anxiety about the demands, expectations and transitions involved in school. We had already referred her, with school’s support, for autism assessment and – following a lightbulb moment with a Steph’s Two Girls post – I realised we were looking at PDA.
When that diagnosis was confirmed, things started to turn around because – as those very few professionals who know about PDA are aware – the traditional approaches for anxious and/or autistic children don’t work for children with a PDA profile. We now knew why Emotionally Based School Avoidance approaches didn’t work. The proof was there that we had been trying the wrong tactics. The worrying evidence was there that actually the strategies and approaches may have been distressing her even further. (The CAMHS professional told us to be ‘careful using the word trauma’. I don’t think we should be wary of using that word at all – that professional never saw her retreat into herself and reach a state of helpless panic on a regular basis when school was mentioned).
Some professionals at school still talk about how we ‘missed the boat’ in the autumn term. They still don’t get it – but I guess they don’t live our life. They may never believe that we were not choosing to have those experiences – we would have given anything for our daughter to respond to the strategies and to go back to school and to smile and to actually BE fine.
I know now that PDA experts are relatively few and far between, and that we have to find those who are local and involve them with our daughter’s education. Our long long journey to secure an EHCP has just started, and, in my professional role, I have now helped a few families to write EHCP’s for children with a PDA profile. I have the skills to fight that fight, and we are learning more every day about low-demand parenting and co-regulation. We have spent years and years trying the old approaches – and I am hopeful, thanks to the support and advocacy of the PDA community, that the new ones will gradually give us a happier and less-masked little girl. I have no idea what her education will look like over the next few years, but I hope she will never again have to act like she’s ‘fine’ at the expense of her mental health.
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Thank you for reading. There are many more examples of families being failed by the system. 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 these experiences 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' experiences 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. This issue of the outdated, failing education system in our country is immense and should not be ignored any longer.
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 there 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 posts in this series please click Not Fine in School to see all posts or the weeks below (short extracts given here):
Week 1 of Not Fine In School
"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."
Week 2 of Not Fine In School
"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."
Week 3 of Not Fine In School
"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."
Week 4 of Not Fine In School
"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."
Week 6 of Not Fine In School
"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."
Week 7 of Not Fine In School
"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."
Week 8 of Not Fine In School
"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."
Week 9 of Not Fine In School
"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.
Week 10 of Not 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."
Week 11 of Not Fine In 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."
Week 12 of Not Fine In School
"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."
Week 13 of Not Fine In School
"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."
Week 14 of Not Fine in School
"Masking is a way of hiding your true feelings. Usually because you don’t feel safe or happy and someone around you doesn’t like how you are feeling or understand what you need.
Masking is exhausting and adds weight to my shoulders.
But it makes other people happy because I’m doing what they want, even if it is making me feel very bad, sad and hurt.
Masking usually leads to a meltdown."
I have Aspergers and was diagnosed at the age of 62 years old. Follow the money. Schools in the United States are funded by the amount of kids in school. No kid, no money. My father who was a principal running the school had Aspergers. He tried to change the system from within with a little success. Thank you for this wonderful article.
ReplyDeleteLoren