Monday, 20 September 2021

Not Fine In School. Experiences of a broken system: Week 1

'Not Fine In School' are four little words that have become a big part of my life over the last ten years. Not just for me though; for hundreds, thousands of other families who are struggling with the education system on a daily basis.

At the start of term every school year it can be difficult for those families to see lots of photos of happy children posing in their uniforms, ready to go back to school, posted across social media. 

Of course we all know that social media doesn't tell the full story; it's easy to imagine that all those smiling children and families are finding school and life super easy but of course that's not always the case. For some, the struggles hit home after a few days or weeks, for others the reality is that they never make it out of the home front door on a school day at all. Even the word 'school' can be enough to induce extreme anxiety and in some cases PTSD (Post-traumatic stress disorder).

There can be many factors leading to not going back to school or not being fine in school. Anxiety and additional needs are arguably the two main ones. Some more aspects are covered in my post Back to School, or not, 2021

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. School refusal is a phrase which has been overused for many years - throwing the blame firmly at the feet of the children who are unable to attend. School anxiety, school-based anxiety or school induced anxiety could all be used as better alternatives, or we could use the term 'School Attendance Barriers' suggested by the team on the Not Fine in School website. 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.
A black background with a multicoloured heart logo in the middle, with the words not fine in school, experiences of a broken system
Some will say that this situation has been the case for years. Some will say that the recent pandemic has caused more problems. Both are likely true. Huge numbers of children are being left by the wayside and that's why I've decided to launch this new series on my blog, called 'Not Fine In School. Experiences of a broken system.' 

This is a chance to highlight what is going wrong; how the education system is not simply leaving children behind, but actually chewing them up, spitting them out and then attempting to forget about them. Some parents spend years battling with the system, trying to get what is right for their child, and others are battled by the system, drained of all energy and left wanting to turn their backs on it completely.

My blog has focused on a particular profile of autism known as Pathological Demand Avoidance over the years but let's be clear, the 'not fine in school' issue is not restricted to PDAers and their families. However, according to the PDA Society's Being Misunderstood survey in 2018, it was found that children with a PDA profile of autism seem to find it especially hard to thrive in school, with 70% unable or regularly struggling to attend. As is the case with our daughter, this is often not because they don't want to go but because the environment is not catering for them. And the same is true of many other families, PDA or not.

This week's post is from a family who were facing these issues and who felt they had to turn to home educating. One of the positives of social media is that it can be used to shine a spotlight on issues like these and bring them to the attention of those who should be improving the system. Please share this post, tweet it, email it, talk about it. Let's make some noise, and make a difference for all those who are being failed by the current system.

 
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"Further to deregistering our daughter from her mainstream school during year 4, we have been home educating for a year and a half.  We decided to home educate as she was not sufficiently supported at school and she was struggling, both academically and mentally. 
My daughter, who would now be in year 6, attended a school where the infant and junior schools were joined but on separate sites, with different headteachers.  Our concerns started in infant school when she would come home and have meltdowns.  Over time we noticed they eased during the holidays.  So I regularly approached school with my concerns, but was told she was meeting academic expectations and showed no signs of anxiety at school.  By the end of year 2 her meltdowns were becoming daily during term time before and after school, and despite a referral to the school nursing team and a counselling service, no one was offering help to us.  In fact, the counselling service told us she was too far advanced in her anxiety to help her.  

When she then started the junior department we met with its headteacher and SENCO (who despite working at the infant site had never become involved in our concerns).  They finally listened and suggested an autism referral.  At this point, we did feel we were starting to get the support we thought we needed.  A year later she was finally diagnosed.  During this time I researched autism to find techniques for us to help her.  I came across references to PDA, Pathological Demand Avoidance.  This was my “lightbulb” moment.  She showed many traits associated with PDA and techniques to help manage PDA were the only ones that helped. “PDA is widely understood to be a profile on the autism spectrum, involving the avoidance of everyday demands and the use of ‘social strategies’ as part of this avoidance.” (PDA Society).  It is driven by the person’s uncontrolled anxiety and need to be in control.  

School told us they could manage her anxiety, but it became clear that they couldn’t.  

Rather than writing a list of school failures, I have quoted ways to support a child with PDA given by those who have experience and given examples of how school failed my daughter.  

Ruth Fidler talk “Engaging children with PDA in learning & promoting their emotional wellbeing” 18th April 2018 at the PDA society conference in Birmingham on 18th April 2018

Understand the individual child and meeting their individual needs (not treating all children the same, with the same strategies)
There was another girl in her class with autism but who showed her behaviour in class.  By year 4 the teacher assumed that what interested this girl would also interest by daughter, not treating them as individuals but collectively.  The strategies for both children were very different.  In fact, this other girl, because she showed her behaviour in class, got more support and attention than my daughter did, being left to struggle in silence.  My daughter even said the teacher assumed she would have the same interests.

Commitment to working closely and openly with families
We built up a relationship with her junior school headteacher and SENCO but at class teacher level it was different.  In year 4 we had a home/school communication book, but it went “missing” for over a month at the end of the first time in year 4.  After a long email after the Christmas holidays about my daughter’s struggles it “reappeared”.  She didn’t want my input to help her – she wanted to do it her way.  My daughter became anxious about school trips.  When I raised my concerns about a visit to a local museum in year 4 her teacher replied that when my daughter realised she was the only one who did not want to go, she would go.  Her teacher had worked out that my daughter didn’t like to look different in front of her class (my daughter was worried she would be bullied) and so knew she would “toe the line”.  However, this would be at great cost to my daughter’s anxiety building inside her.  This also broke down relations between my daughter and her teacher because she could see the teacher wasn’t trying to help her.

Listen to and believe parents’ stories as part of a holistic understanding
The SENCO and headteacher did listen, but on a daily basis her year 4 teacher lost interest as she also had to manage two pupils with dyslexia and dyscalculia.  As they were behind academically, these children were her priority.  

My daughter compartmentalized aspects of her life – school was school and home was home.  Once home, she rarely discussed any part of her school day or problems because that part of the day had passed and to her, she was in her safe place once home.  This created problems with homework as that meant a part of school was in her home environment.  Her year 4 teacher offered to adapt homework to concentrate on learning her times tables but this never happened.

Allow more processing time – children with PDA not only need time to process what others on the autism spectrum need time to process (sensory environment, social demands, information, the task in hand) they also need time to process whether they can cope with a demand at that time.
Every week in junior school they had a times table test of 60 questions to be completed in 10 minutes.  My daughter struggled with this because the page was visually overwhelming, full of numbers before she even started.  However, a different teacher took her for maths but was not made aware of her autism and anxiety so no adjustments were made.  Eventually her class teacher said she would speak to the maths teacher.  It became clear that where she had a different teacher for a subject, information was not shared and so it was like starting from scratch again.  The school put together an intervention plan in year 3, yet it was never passed onto year 4 at the start of the year so her class teacher had no idea what small amount of support she had in year 3.

By year 4, before a child could ask the teacher for help they had to try and resolve their problem themselves by asking the pupil they sat next to.  My daughter was lost in all of this, and it didn’t help if the child she was sitting next to wasn’t doing it correctly.  My daughter felt she couldn’t ask an adult for help.

Use visual clarification systems but not in the same way as they are used for children with a more straightforward presentation of autism as this is too prescription for children with PDA and will be perceived as a demand.  Use them to create some structure but flexibility within it.
They introduced a visual timetable for my daughter in year 3 but she didn’t find it helpful, as it gave her time in the day to worry about what was coming up.       

Use novelty and variety …… to be engaging…
My daughter struggled with many of the topics at school, they caused her anxiety.  Many of the books she read raised her anxiety because she took things literally and no one explained their meanings – because my daughter comes across with a good understanding of the English language they thought she comprehended what she was reading.  In fact, although on the outside it looked like that, she lacked the depth of understanding.  For example, in year 4 they studied and wrote about Baba Yaga, a witch who steals, cooks, and eats her victims, usually children.  

Use personal interests to set up missions, challenges and projects to engage a child.
Our teachers only used the curriculum, no matter how much a child struggled.  My daughter didn’t like many of the topics they studied, especially as she also took what she was told literally.  For example, for half a term all their subjects focused on the fire of London.  It was only in year 3 did the teacher say it couldn’t happen like that now because of houses being made of brick.

Reward systems don’t tend to work well for children and PDA because there are lots of demands involved.  
Every class had a behaviour traffic light system.  The top positions was the sunshine. Our girl was anxious, the whole time she was at school, that she would be moved off the sunshine – she never was.
In junior school each child worked towards their pen licence.  This was to improve their handwriting and the reward at the end was to be able to work in pen.  On many occasions my daughter was given positive encouragement that she was near receiving her licence but for weeks she didn’t.  She continually asked me whether at Senior School she would still have to write in pencil.  Finally, she became so anxious about the pen licence and that her handwriting wasn’t good enough she screwed up her homework.  Only once I showed this to the Senco did the school appreciate how much the stress of working towards getting her pen was causing her.  

Remember sensory sensitivities because they are likely to impact many children with PDA. 
My daughter struggled with many sensory issues at school:
She couldn’t cope with other people in her space, it created too much bustle and overloaded her brain.  
She hated stuffy classroom atmospheres, feeling she couldn’t breathe.  
She disliked the environment of the classroom, corridor and daily assemblies in the large hall with the whole school.
She didn’t like the smell of the dining room.
She didn’t like the smell of other pupils’ deodorant.
She got a daily headache learning from the projector screen.

The school changed their uniform at junior stage from polo neck and jumper to shirt, tie and jumper.  She didn’t like the shirt.  It was more restrictive than a polo neck.  Every morning it got harder and harder to get her ready for school.  The school policy changed as the executive head felt if you felt smart you would be ready for learning.  My daughter’s attitude was she could only learn if she was comfortable.  School only relented when I said I would have to find a new school for my daughter that wore a polo shirt as we were at school refusal stage.  She was then allowed to wear a polo shirt with her tie, although they hoped by the next winter she would be able to wear the shirt.  

In year 4 her teacher said she would create a sensory box for my daughter to go to when she felt overloaded.  This never happened.

In year 3 we asked whether she could have a fiddle toy for when she was feeling anxious and stressed.  We were told she could have a small amount of blue tac in her pocket so it wasn’t obvious, because a fiddle toy was too obvious to other members of the class wanting one.

Think very carefully about what can be done to support the child’s emotional wellbeing.  
Following her autism diagnosis, the SENCO told me it was not necessary to apply for an EHCP, that they could manage her anxiety.  However, it was very clear that a lot of my daughter’s anxiety was driven by life at school.  She attended ELSA sessions on a one to one basis.  She enjoyed these as they were one to one with a member of staff and away from her classroom.  When I asked school if she would be able to continue these long term, as a reasonable adjustment for her coping with school, I was told no by the SENCO because the waiting list for the sessions were too long.

Understand the profile of the child who camouflages or “masks in school and then has meltdowns at home and realise that those two things are related.
“Those who haven’t experienced the frustration of being misunderstood as the parent of a child with Autism can find it hard to believe that the perfectly behaved little girl (and it usually is little girls) who keeps her head down at school and tries really hard to comply and ‘fit in’ with the other children can suddenly change when she comes out of school.  ………….. Girls in particular can be very good at ‘masking’ their worries and anxieties.  They will smile, laugh and joke with the other children, appear to be getting on with their school work and have lots of friends.  However the strain of trying to keep this up all day can be huge.”  

Although the SENCO and headteacher of the junior school understood masking, my daughter’s teachers didn’t and assumed if she looked fine she was alright.  

“It is important to develop a strong relationship with a child who has high anxiety.”

In year 3 the SENCO recommended her class teacher make contact with her at the end of the day just to check in.  This stopped after a few weeks as the teacher ran out of time and my daughter looked okay.  My daughter felt let down by the teacher for not doing this. 

Look at the day and week ahead, to anticipate what might be tricky for the child.  Identifying the predictable triggers will mean you can plan strategies in advance.
At the start of year 4 a member of staff highlighted the topics over the course of the academic year that my daughter may struggle with and adjustments that could be made to help her.  However, when it actually came to these topics her class teacher denied all knowledge of them being areas that she may struggle with, told us she had to learn them, we would be comprising her education if we didn’t.  

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.  Since a young age she suffered from constipation issues and we were under the GP about this.  At junior school stage they could only access their bottles at breaktime and lunchtime.  I had to pay £40 for a doctors letter to allow her bottle to be on her desk otherwise she wouldn’t have any water all day.  

Home educating our daughter lets us deliver a person centred education, tailored to her interests and delivered in a manner she will engage with.  We can provide variety, and change what we are doing if we see she is struggling. 

“In place of firm boundaries and use of rewards, consequences and praise, PDA adults and children respond better to a person-centred, holistic approach based on trust, negotiation, collaboration, flexibility and careful use of language”.  

She is in an environment she feels comfortable in, where her sensory tolerances are kept low.  She has time and space to learn about herself.  Since deregistering her the meltdowns have reduced in number greatly.  Occasionally after school she would try and hurt me as I was her safe space from school.  Professionals liken this to a cola bottle gradually being shaken and then explodes.  I read numerous publications about PDA to ensure I am able to meet her needs.

“It is unacceptable that 70% of young people in families surveyed are either at home or struggling to access school environments, and because their needs are being misunderstood, many are missing out on education.”    

“As our understanding of the PDA profile grows, so does recognition of the implications for those who live and work with children and young people.  Due to their high levels of anxiety and need for control they respond better to flexibility, negotiation and a less direct style.  Putting this sort of learning environment in place requires significant adaption from schools as organisations as well as the individual style of those working directly with the pupil.  When these adaptations are made tolerance levels increase and lead to greater engagement in the learning opportunities.”  

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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. 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. But this issue of the outdated, failing system is huge and should not be brushed under the carpet any more. 

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, 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 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.

For the other weeks in this series please click the links below:






For more information about PDA, please read any of the books in my post 
Books about the Pathological Demand Avoidance (PDA) profile of autism 
Stack of book spines, all books about PDA listed in the post link given

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.


What is PDA (Pathological Demand Avoidance)?


Ten things you need to know about Pathological Demand Avoidance


Does my child have Pathological Demand Avoidance?


The difference between PDA and ODD


Strategies for PDA (Pathological Demand Avoidance)


Pathological Demand Avoidance: Strategies for Schools


Challenging Behaviour and PDA


Is Pathological Demand Avoidance real?


Autism with demand avoidance or Pathological Demand Avoidance?




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2 comments:

  1. My youngest had a terrible time at primary school and the first year of secondary. She was bullied, the school didn't really care about her being deaf in one ear and at one point was assessed for Autism but was diagnosed with social anxiety. We were failed by the school. I dread to think what would have happened if we didn't move house. My girl started a new school who have been so supportive and she is doing so well now!

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    1. Ah that's lovely to hear that you've found somewhere good. Some of the issues can be down to attitudes for sure, but some are more system driven too x

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