Families affected by school refusal share their stories

https://www.bbc.co.uk/news/uk-england-derbyshire-49758800

Version 0 of 1.

The experiences of a 14-year-old boy, whose social anxiety disorder has led to him missing school for much of the academic year, have prompted others to come forward to share their stories.

Kai, from Chesterfield, has a condition known as school refusal, but his mother Debbie Bendall said he was treated like a truant and the family had faced threats of fines over his non-attendance.

Since Kai's story was published, a number of people have come forward to tell similar stories of how their conditions affected their school life.

Ms Bendall said she shared the family's story to help others and had been inundated with messages of support from parents going through the same difficulties.

"Too many people are quick to judge and don't recognise the bigger picture," she said.

"There is a lack of empathy... but it's good that we've got the issue out there."

'I laid down and thought I would die'

After reading Kai's story, Jon Ward, 60, from Clacton-on-Sea in Essex, realised he had experienced the same condition in the late 1960s and early '70s.

"It could have been me. I did all of those things," he said.

"I never really thought school was anything to do with [my anxiety]. No-one gave it a thought."

Mr Ward, who married in 1986 and has a daughter, said he enjoyed learning but found many aspects of school "stressful" and did anything to avoid it.

His mother would usually write him sick notes for PE, but on one occasion she refused.

It was a decision that could have ended in tragedy because Jon responded by taking a bottle of painkillers to the garden shed.

"I swallowed the whole lot," he said. "I laid down and thought I would die."

Thankfully he woke up but, still faced with the prospect of school, he "skived off" and visited the library instead where he could relax and read.

"No-one ever discussed anything about mental health," he said.

"I was seen as a rebel but I did have an interest in school. There was zero help."

'Re-plastering holes in the wall'

Harry (not his real name), who is 14, was diagnosed with attention deficit hyperactivity disorder (ADHD) at the age of six and autism at nine.

He has not been to school at all since February 2018, which has led to his mother, a trained social worker, being taken to court and fined.

When Harry started high school in 2016, his mother said she was led to believe he would get the support he needed but it never materialised and after the half-term break he started refusing to go to school.

She said her son had pathological demand avoidance - a behaviour profile within the autistic spectrum - which meant he needed to be in "control of everything".

As a result, the demands of school on her son had the "coke bottle effect", she said, with everything shaken up in the day before being released at home.

"Trying to get him to conform causes anxiety which manifests itself as aggression," she said.

"I have been physically attacked, had TVs, windows, doors smashed. [I have given] up re-plastering all the holes in his bedroom wall."

She said her parenting had been blamed but she believed his behaviour was because he "couldn't cope in a mainstream classroom".

After years of trying, she has succeeded in getting an Education, Health and Care Plan, intended for children who needed more support than was available, for Harry - but it had come at a cost.

He has largely missed two years of education and as his mother had been unable to work she was at risk of losing her home because of the loss of earnings.

However, Harry has since started on a foundation learning programme in animal studies and horticulture and his mum said she hoped this would get him back into a routine.

'Pressure led to marriage breakdown'

The mother of a 10-year-old told the BBC his journey through the education system had been "shambolic".

Sarah said Charlie (not their real names) was diagnosed with ADHD at the age of four and subsequently with a number of other problems, including high anxiety levels and sleep issues.

He has been out of school completely for about a year.

Sarah said Charlie found it hard to process what he was being taught in class and without one-to-one support he struggled, which led to him not wanting to go to school.

His school refusal "pulled her world apart" leading to her splitting from her husband and having to give up her career as a marketing director to care for her son full-time.

"I would drive him there and he would be kicking at the windscreen and taking his seat belt off," Sarah said.

"[On arrival] the teachers would just say 'well, he's here now'."

Sarah said she would often be told Charlie was "fine" and that she was an "overbearing parent" who should "toughen up".

But she said it was the schools Charlie attended that had failed to recognise or accept his disabilities and special needs.

Charlie would "explode" following a day at school, sometimes becoming "violent" and "withdrawn" and even "self-harming", Sarah said.

"The damage to me and him has been immense and there are thousands of us," she said.

Sarah remains positive, however, and has managed to secure funding to get Charlie some private tuition.

'No two cases are the same'

Mind said children experiencing social anxiety disorder or school refusal experienced emotional distress about attending school.

Fran Morgan runs a parent-led organisation called Square Peg that aims to bring about national change for families experiencing these problems.

She said there could be a "variety of different scenarios" for a child's school refusal and "no two cases will be the same", adding that many parents have been fined and prosecuted, while others have been investigated by social services.

"These children want to go to school and their parents want that too, it's just that they can't," she said.

Harry and Charlie's mums have both worked with Not Fine in School, a similar organisation supporting the families of children struggling with school attendance, which has about 8,000 members on its closed Facebook Group for parents.

Not Fine in School and Square Peg both said they wanted the government to recognise the challenges many parents faced and have called for an overhaul of the attendance system with more help for children who are struggling.

The two organisations have also called for the accountability of schools and local authorities to be improved.

A Department for Education spokesperson said: "The advice to schools is clear, they should authorise absences due to illness, related to both physical and mental health."

Names in this story have been changed to protect the children's identities.

Follow BBC East Midlands on Facebook, Twitter, or Instagram. Send your story ideas to eastmidsnews@bbc.co.uk.