I had a breakdown and had to be signed off sick because my six-year-old son kept getting in trouble at school

ANSWERING the phone call from her son’s school, Rox felt a surge of anxiety as she was told she’d have to collect him because he was out of control.

This was far from the first time Rox, an occupational therapist for a local authority, had been forced to cancel an appointment at the last minute and set off on the 40-mile drive to take her son Joseph*, who is autistic and now aged 12, back to the family home.

“My heart was racing and my head pounding, as I tried to cancel the rest of my appointments for that day.

“I worked in the crisis team and felt terrible letting my patients down,” says Rox, 40, from Lincolnshire.

“At the same time, I had to keep my eyes on the road and try not to catastrophise about what he’d done, as I knew on previous occasions he’d upended tables and thrown chairs.

“As it turned out, this time he’d escaped from school grounds and had to be brought back by staff.”

Last March, after a string of suspensions, Rox eventually had to make the difficult decision to give up her job and home-educate Joseph, when his mainstream school said it could “not meet his needs” and there was no place in a specialist school available.

‘With schools so poorly equipped, it means responsibility falls time and again to parents’

Rox is just one of thousands of mothers to children with special educational needs (SEN) whose lives are falling apart under the pressure of simply trying to access an education for their kids.

Their careers, mental health and relationships are all crumbling under the immense strain caused by a growing crisis.

Latest statistics from the Department of Education show that more than 1.6 million pupils in England – around 80% of whom attend mainstream schools – have SEN.

Of their parents, 90% say they have to “fight” to get appropriate support in an education system that is failing their children.

A recently published report by the Children’s Commissioner also revealed that 22% of the 2,900 children “missing” from education in England – which means they were neither enrolled in a school nor being appropriately educated elsewhere – have SEN.

As Rox knows, it is parents – and often mothers – who are bearing the brunt of their children being unable to access the support they need.

Collectively, parents of children with SEN experience higher rates of mental illness, and 41% of those caring for kids with a disability have thought about suicide, according to a report published last year. **

“I don’t blame the teachers, who had neither the facilities nor resources to support Joseph,” says Rox.

“However, with schools so poorly equipped, responsibility falls time and again to parents, usually mothers like me.”

Joseph was diagnosed with autism at five and, having been awarded an Educational Health Care Plan (EHCP), benefitted from one-to-one support from teaching assistants throughout his primary school years.

The school occasionally had to call Rox when Joseph started shouting and insisting on leaving the classroom to escape the noise and bright lights that caused him to suffer from sensory overload.

But it was when he transitioned to secondary school in September 2023 that the calls started coming several times a week.

“The TA at secondary school was shared by several children, all of whom had additional needs,” explains Rox.

“This meant that when he absconded, the TA couldn’t follow him, because she had other kids to support.

“Although he’s academically bright, it was clear a mainstream secondary school could not accommodate his needs.”

The impact on Rox and her husband, who works in education, was crushing.

By the time Joseph’s school told her it wasn’t possible for them to meet his needs, Rox had become so anxious and depressed, juggling the demands of her job while dreading calls from her son’s school, she was constantly on the verge of tears and unable to sleep at night.

Her GP prescribed antidepressants and recommended counselling, which given how much pressure she was under, she couldn’t find the time to attend.

From March until November last year, Rox home-educated Joseph, but she found it incredibly demanding.

She says: “If an autistic child doesn’t want to learn, you can’t make them, so we spent time on low-demand activities, like watching an episode of Doctor Who and answering questions on a worksheet.”

Managing on one wage was a struggle and the family could no longer afford day trips or meals out, which made the daily demands feel even more of a slog.

Joseph was deeply unhappy, too, missing school so much that he began self-harming and talking about “wanting to die”, which Rox says was heartbreaking to witness.

‘If your child isn’t in school, it affects your ability to work, creating financial difficulties’

In November last year, a place became available in a private specialist school 25 miles away, funded by Lincolnshire County Council.

So far, Joseph’s needs are being met, as there are only six children in his class.

There’s also a sensory room, where he can go if he’s feeling overwhelmed by sights and sounds, as well as support on hand from an occupational therapist.

However, navigating the education system for her child has put a significant strain on Rox’s own mental health.

She’s still on medication, and has taken a significant pay cut to work from home as a call centre handler, which has had a knock-on impact on the family’s finances.

She hopes to one day return to a role in occupational therapy.

However, Joseph’s transition from home-education to his new school has been a gradual process, and he’s still only attending up to four days a week.

Educational psychologist Dr Michele McDowell gets enquiries weekly from parents who are “anxious, stressed and exhausted” from trying to get support for their kids.

“Parental stress is exacerbated by a system that is at a crisis point,” says Michele.

“One in which there are not enough professionals and there is not enough money, leading parents to feel disappointed, mistrustful and let down.

“The impact on family life can’t be underestimated.

“If your child isn’t in school, or is regularly sent home, it affects your ability to work, creating financial difficulties.”

Laura, 42, from Dorset, is one of the “lucky” ones, whose son Max* has an EHCP.

However, at the age of six he has already been suspended from school six times and has just joined an 18-month waiting list to be assessed for autism and ADHD.

‘I was shaking, sobbing and thought: “I just can’t do this any more”’

In the meantime, Laura, who works in charity communications, is on constant alert, anticipating a call from her son’s school at any point during the day.

Seeing the number flash up on her phone provokes feelings of such intense anxiety, she believes she has “mild PTSD”.

Her husband, while a devoted dad, works as a teacher and is not in a position to collect Max from school in the middle of the day.

“I’ve been told I need to collect him because he’s knocked over trays and thrown pens and paper around the classroom, or he’s turned on a hosepipe in the playground, spraying teachers,” explains Laura.

“On other occasions, he’s pushed another child, thrown a stone that hit a staff member’s car and he’s escaped underneath the school gates.”

Laura says she experienced a “mini breakdown” last June after school drop-off.

“My son had been screaming at me all morning.

“On the walk home, I burst into tears thinking about sitting at my desk, getting a call from school and having to explain to my boss that I needed to leave to collect my son – again.

“I was shaking, sobbing, and I thought: ‘I just can’t do this any more.’

“Dealing with Max having another meltdown while watching other parents calmly walking into school, I couldn’t help but think how much easier life would be with a neurotypical kid.

“I don’t resent him – I love him dearly.

“He’s a really lovely child, it’s just that life and especially school, is much more challenging for him.”

Laura was seen by a mental health nurse that day, who signed her off sick and also made a referral to a cognitive behavioural therapy course.

After suffering panic attacks and having trouble sleeping, she decided the only way she could continue to function as a working mum of a child with special educational needs, was to resign from her job and go freelance.

“My husband can’t leave his classroom during the day, which means it all falls to me,” says Laura.

“We have a good marriage, but the demand of meeting our son’s needs doesn’t leave a lot of time for us as a couple, which puts a strain on the relationship.”

Sam Carlisle, whose disabled daughter, Elvi is now 23, says the battle parents face in seeking support for their SEN children has always been tough, but has “got so much worse” in recent years.

Sam gave up her role as a newspaper executive eight years ago, because the fight with authorities to secure support for her daughter, who has a rare genetic condition, was consuming all her time.

She now runs Cause Communications, creating campaigns for charities, including those supporting children with SEN.

‘It becomes a full-time job for mothers fighting for everything their SEN child might need’

Sam puts the struggles so many parents are facing down to a growing need for services, because of a raised awareness of neurodivergence and that children with complex needs are living longer.

“Local councils were stripped of funding during the austerity period and that coincided with this growth in need,” she says.

“It created a perfect storm, with councils unable to cope, in some cases breaking the law by refusing to assess children because they thought: ‘If we don’t assess them, we won’t have to pay for provision.’

“But then, further down the line, these children’s needs escalate and their mental health issues, behaviour or school refusing gets so much worse.

“It becomes a full-time job for parents, mostly mothers, fighting for everything their SEN child might need to access education.”

Rox is all too aware of the toll this fight can have.

She says: “Now that Joseph has a place in a school that seems able to meet his needs, I feel a lot more positive about the future, though it’s still early days.

“However, it feels unfair that fighting to ensure he has a safe and happy time at school has had such a devastating impact on my own career, finances and mental health.”