Parents caring for a child with special needs are twice as likely to be diagnosed with mental health conditions

39% were diagnosed with a problem

A further 31% believed they had experienced a mental health condition, but suffered in silence

90% said that receiving treatment for their mental wellbeing would have benefitted them

Under Siege:

Parent carers and the battle for mental wellbeing

by Laura Woodroffe | July 2017

It was 01 September 2001 in London, a warm summer evening. Behind the walls of the Queen Charlotte Hospital in Hammersmith, a very premature baby boy had just made his precipitous entrance. Max, the first child of lawyers Sophie and Henry, had arrived.

A young and inexperienced locum was covering the birth. Within seconds of Max's arrival, she abruptly offered her unvarnished opinion of their firstborn.

"She just turned to Henry and said, 'There's something wrong - Down Syndrome or something.'" remembers Sophie. "That was the wonderful announcement of his arrival. I went into complete shock. It literally felt like the end of the world. Everything collapsed."

That night she was separated from Max, who was taken to intensive care. Sophie lay on her hospital bed and cried and cried. She can't recall precisely when Henry left. "All I remember is feeling very clearly, that up until this moment my life had been perfect. Now, suddenly, everything had gone wrong".

After several dizzyingly stressful weeks in hospital, Max would be diagnosed with a rare chromosome disorder. That day, Sophie and Henry started on a journey shared by millions of people around the world. A journey as carers, as well as parents.

Chapter One

"It's so much to bear sometimes"

Listen: Helen, London, mother to Marigold

Parents like Sophie and Henry face particular challenges to their mental wellbeing. And research carried out for this article suggests they often have to cope without professional support.

They are anxious for their child, and some are frightened by the medical issues they must deal with. They are grieving the loss of the life they had planned and the healthy child they expected or once had, a recognised condition called chronic sorrow. They must navigate alien systems of social care, medical services and education. On top of this, they are pummelled by an overbearingly negative societal narrative about disability and difference, which positions their situation as a tragedy, rather than something that can be dealt with.

Over 150 parent carers took part in a survey. They shared information about their mental health, the things that affected their wellbeing and their experiences accessing support.

Survey question


Have you ever been diagnosed with a mental health condition?

19% were diagnosed with a mental health condition before they became carers.

Statistically, this is in line with data from the Mental Health Foundation that one in six people from the general population has suffered a mental health issue over the last seven days.

39% were diagnosed with a problem after discovering their child's condition

This is an increase of over 100 per cent. So more than one in three parents who are also caring for a child will be diagnosed with a mental health condition at some point.

In addition, many go undiagnosed. Just under half of the parents, who did not have a diagnosis, believed they had also suffered some form of mental health issue. That means that overall 70% of the parents surveyed had experienced problems with their mental wellbeing since also becoming a carer for their child.

Ten parents, all mothers, took part in in-depth interviews to tell their stories. Combined with the survey, an on-going, and often lonely, struggle to maintain mental health is revealed.

Sasha, 31, is a single mum of five children, two of whom have special needs. Her description of the state of mind she finds herself in when it all becomes too much is uncompromisingly honest. "I don't feel like myself anymore," she says. "I feel like I'm constantly fighting and... I'm not fun anymore. I don't want to be around people. I've lost a lot of friends, I take sleeping tablets. I should probably take anti-depressants, but I won't go to the doctor, I'm afraid that if I admit I'm not coping, someone will take my children away. Some days I just don't want to get out of bed."

Many parents in this situation are reluctant, as Sasha was, to ask for help. They feel that not coping is a negative reflection on their parenting ability. So, if professionals they come into contact with do not ask the question, it is highly likely that mental health issues will go unmonitored and untreated.

Survey question


Have you ever asked a professional for help?

Even though these parents are often in front of people that can help, that question does not always get asked. 64 per cent of the survey respondents and six of the ten women interviewed had never been asked by a professional how they were coping.

"Counselling should be offered to parents with a SEN child as a matter of course," says Sasha, "even if it was just a telephone service. Otherwise, that's a really big number of people that are getting no offers of help."

The surveyed parents agreed. Ninety per cent of the parents felt that receiving support would have helped them in some way.

Caring, parenthood and mental health in the UK

6.5mThe number of unpaid carers in the UK.

Estimated to rise to over 9 million by 2030

source

1m children of school age in the UK have special educational needs

That's 15% of the school population

source

1m adults in the UK with learning disabilities.

Some of these adults will still be dependent on their parents for care.

source

82%of carers report a negative impact on their health

source

84% per cent of carers reported feeling more stressed

source

55% of carers suffered from depression

source

£132The number of billions of pounds that unpaid carers save the economy a year

That's equal to the entire health budget in 2015

source

1 in 10 women develop a mental illness during pregnancy or in the first year after having a baby. The biggest cause of death amongst women during this time is suicide

source

Of course, not all parent carers become carers at the birth of their child. Many conditions are not apparent or do not develop until later. But for those parents who do face a diagnosis early in their child's life, they have to deal with it at a time when their mental wellbeing is already challenged. Birth, attachment and feeding are all fundamental aspects of early parenthood on which a weight of expectation is loaded. Facing difficulty with these initial experiences, as many parents of children with additional needs do, can put any parent in a fragile position mentally.

Picture: Nikolay Osmachko, Pexels

The counsellor's view

Emma Sice is a person-centred therapist accredited by the British Association for Counselling and Psychotherapy. She works with clients to uncover the roots of behavioural patterns, which contribute to their presenting condition.

Photograph: Charlie Carter

Change is difficult, especially when your identity is challenged. Big life changes can unearth things that are lying in the unconscious. They get rolled into the present and make things even more emotionally disturbed."

All parents feel the weight of expectation and responsibility. But for the parent of a child with additional needs this is multiplied. There are more reasons to feel you are not getting things right. And there is the fear of judgement and the shame of difference, of not fitting in."

Chapter Two

The shock of diagnosis

Listen: Rebecca, Croydon, mother to Talia Rose

The figures above reveal a mostly invisible army, one that is propping up our medical and social care services. But this is an army under siege. For parent carers, the spectacular joys of bringing up their child are accompanied by a particular set of stressors, often from external sources. For many the first of these is diagnosis.

Whether it is the results of genetic testing or an assessment of a disorder such as ADHD, diagnosis can be a profoundly difficult time for a parent carer at whatever point in their child's life it comes. They often feel grief as powerful as that experienced after bereavement. This is a crucial moment when parents need support.

"I am still having a hard time dealing with it. I'm seeing a therapist, and I want to say that I have accepted it - that I have gone through the stages of grief, but I'm not there yet. My son is going to have a hard life - if there were some way I could take it off him and put it on me I would."
Kate, USA, mother to Max

Diagnosis is not just hard in and of itself. Many parents face a fight to get one, and then a lack of information or signposting once they have it.

Sasha was 21 when her son began to miss his milestones and faced outright derision from professionals. "On one occasion the doctor actually said to me, "You're just young, you're probably not doing what you're supposed to." But I already had two other children, so I knew that wasn't true." Her son eventually received a diagnosis of Mosaic Down Syndrome three years later.

And the problem with fighting for diagnosis is that it is also a fight for treatment. Without it, many services are just not available.

Kate Bozek from the US is the mother of Kevin, a 26-year-old man with the rare disease Jacobsen's Syndrome. She battled both medics and teachers for years. "The paediatrician just kept saying, "He's just a boy, he'll be fine." Then his teachers told me his behaviours were because I was doing something wrong at home. When he was diagnosed at the age of twelve, it was such a relief. Finally, we could get the help he needed. No-one ever apologised for blaming us though."

In the UK, there is evidence that situations like this will become more common. Cuts to budgets mean that some local authorities are already reluctant to facilitate diagnoses of conditions like ASD.

The effect of repeated scepticism at the hands of professionals and institutions manifests itself throughout conversations with these women, which are punctuated with exclamations like, "No one listens to you!" Half of the parents interviewed had similar stories and were disheartened by it.

None of that behaviour is affirming. It's all discounting, disaffirming. It activates the need to fight because people receiving this kind of reaction from others begin to anticipate a negative response, to protect themselves in the future."
Emma Sice, Counsellor

Chapter 3

Consumed by the fight

Listen: Sophie, London, mother to Max

Confrontation with people in authority can become part of carers' lives as they fight to access the support their child needs.

In an early episode of the ABC series 'Speechless' Maya, mother to JJ who has cerebral palsy, runs through a list of schools, trying to identify which one has labelled her as difficult to her son's current headteacher. The list is long - she's had a lot of battles. Speechless' characterisation of Maya is humorous, but not far from the truth for a lot of parents.

In this scenario, fighting can quickly become second nature. Emma Sice believes this could be a trigger for mental health problems.

I'm not at all discounting the difficulty of navigating all these systems, of having to be armed and ready on behalf of your child. But fighting can also be a distraction from the things you can't change and the emotional issues that are so hard to be with. A way of avoiding what it is you need to work on for yourself, to make you happy. It could prevent you from accepting your situation, and only by accepting it are you able to feel change within it. Otherwise, you are stuck."
Emma Sice, Counsellor

In the case of complex children, the conflict is exacerbated by the sheer number of different agencies involved. Sharon Scott is a Family Link worker for the Croydon branch of Parents in Partnership (PIP), a charity, which supports parent carers. "I once did a comparison of the number of people involved with a typical child compared to a lady we were working with," she says. "For a typical child, it's usually just two, a health visitor and a GP. Her son had 42 agencies involved with him. She had to juggle all of those people, all of those appointments. Managing all that is incredibly difficult."

Hayley Browne from Croydon, near London, has a son and a daughter with significant additional needs. Her experiences have been mostly positive, and contrary to the stereotype of the stressed parent, she exudes a calm contentment that many parents of typical children would envy.

She smiles as she says, "A lot of people just don't see the SEN world for what it really is. I am really happy in my little special needs bubble."

But even she has had her upbeat disposition and determination thrashed on occasion, in particular when it comes to claiming benefits.

Many parents in the UK dread the bi-annual chore of filling out the application for Disability Living Allowance. The form is seventy questions long and requires reams of evidence.

Hayley used to have what is known as high-rate mobility for her son Alex. But it was removed by the DWP. "They said he was mobile, so he doesn't need the high rate," she says. "But he isn't safe to walk around on his own. So by rights, he should still get it. I appealed four times. I was on the phone to them in tears constantly. In the end, they said they would take all his benefits away if I appealed again. I wish I hadn't given up. But I was just so distraught by all the fighting."

Hayley is not alone. A recent FOI request underlines the procedural difficulties placed in the way of people accessing disability benefits and the level of stress this can cause. It was discovered that ATOS, the private company that deals with applications, has an internal target to reject eighty per cent of mandatory reconsiderations as one of its staff's key performance indicators. Despite this, over 60 per cent of reconsiderations that are taken to appeal are upheld, suggesting that this is an unnecessarily high target.

Finances can be a source of major stress for parent carers, who may lose jobs and careers as a result of their caring. Many surveyed felt that benefits and support were made disproportionately tricky to access, requiring them to fight more than they would like.

Education can become another place of confrontation. Two of the parents interviewed had recently removed their child from a mainstream school because they were not receiving the right support.

Judith Lunnon is the SEN Improvement Advisor for Croydon. She works with primary and secondary schools in the borough, helping local SENCO's (SEN coordinators in schools) deliver an excellent service. She points to a conflict between the needs of individual children, versus the needs of the school.

"The funding for children with SEN has been devolved from local authorities to the schools, and it isn't ring-fenced. It is the responsibility of the schools to manage their budgets. That can bring them into conflict with parents who, quite understandably, want the funding for their child and don't see that bigger picture."

The scenario Judith presents looks set to get worse. The campaigning website schoolcuts.org.uk claims that 93 per cent of schools will see a per-pupil cut in income by 2022. Many will be forced to lose teaching assistants and teachers. These staff losses could cause even more problems as schools struggle to meet the needs of pupils who require one-to-one support.

Judith also points to a lack of training as a cause of pain between parents and schools. "The SEND Code of Practice states that all teachers are SENCO. But is that requirement reflected in the teachers training?" she asks. "Are they taught the skill of properly engaging and communicating with parents, something that is essential when a child with SEN is involved. There is an organisation that runs training, but whether the teacher receives it or not, is dependent on whether their school is part of the programme."

Chapter 4

Combatting isolation and social exclusion

Listen: Helen, London, mother to Marigold

Most of the people interviewed did not socialise as much as they used to. Even those with considerable family and social networks could find themselves feeling isolated and unable to reach out even to those closest to them.

"Isolation can have serious consequences. In the extreme, it can lead to serious mental unwellness. Humans are social beings. We are affirmed by our friendships. We need to be heard. We need conversation, eye-contact, reciprocity. Isolation can cause paranoia, OCD behaviours and even addiction. It's crucial that someone experiencing mental unwellness is exposed to positive social experiences."
Emma Sice, Counsellor

Theresa* lives in New Zealand and has a 14-year-old daughter with a rare chromosome disorder. Her voice breaks as she talks. "The social things are really, really difficult because she struggles to fit in. Birthday parties... oh those are the worst. There are about 30 parties in her year every year. She stopped hoping to be invited in the end. It's so hard."

This social exclusion does not just affect her daughter. "You isolate yourself because every social engagement is just so difficult," she says. "Fifteen minutes in something goes wrong with the other children, and she just wants to go. And eventually, you stop being invited."

And even family are not always there to support them. Theresa tells a story about her Father, "Last year I was telling my parents how hard it was at school. She was being bullied and wouldn't go back, so the school counsellor had to do a suicide risk assessment. And my Dad says, "Do you think it's because you give her too much attention at home?" I left quickly that day!"

Lack of opportunities to articulate their situation can make parents feel socially excluded. That, in turn, increases the feeling of isolation.

A less obvious cause of isolation, even for those surrounded by friends and family, is the inability to tell one's story and feel heard. Here then, is a genuine role that talking therapy could play to alleviate the mental health challenges that feelings of isolation cause.

Sometimes it is hard to talk about something as difficult as this without feeling that you affect your friendships. Your friends may think 'oh no, they're talking about that again'. This can feel complicated and difficult. Unlike therapy, where there is no judgement, you may find you have to manage your communication with friends. You perhaps have to make it socially acceptable."
Emma Sice, Counsellor

Helen Burness recognises this. Her three-year-old daughter, Marigold, almost died during an apnoea attack aged one and was diagnosed with a rare chromosome disorder. She writes a popular blog about her experiences. "I'm regularly approached for advice by people who want to write their own blog," she says. "Most of them never do it. I wonder if it's because they are actually just searching for a platform where they can feel comfortable telling their story."

She recalls the first time she told a group of her friends Marigold's story. "I'd been talking for ages, and I suddenly looked up. They were all [mimes mouth open and eyes wide] they just didn't know what to say. Then one of them got really upset, and it ended up with me comforting them. I think it's a massive thing. You never get to articulate it all, because it's just too much for people to take in."

Chapter 5

How online support trumps friends, family and professionals

Listen: Helen, London, mother to Marigold

Support for their mental health from professional channels was not something that many people were able to access.

Of the parents surveyed that had received some kind of treatment most of them were given medication, and around half of them expressed dissatisfaction at this. Those that were able to access talking therapies through the NHS were often disappointed by the waiting lists and brevity of the treatment offered.

Survey question


What treatment were you given?

Sally* from Cumbria was referred for CBT after years of dealing with her daughters severe syndrome without a name. "At first it was frustrating," she says. "I think it took the counsellor a few sessions to grasp that this was a different kind of situation from the usual she dealt with. One that was not going to get better or improve. But it was very helpful. Just knowing there was someone I could unload everything to, rather than having to put on this front of coping. But you only get 12 sessions - according to the NHS, I'm cured now! I can't be referred again for quite a long period of time."

So if they aren't receiving professional support, where are they finding help? In the survey, parents were asked to score various sources of support depending on how much they relied on them.

Survey question


Score these sources of support...

1st
  Partner
2nd
  Online
3rd
  Friends
4th
  Family

The fact that online support scored so highly in the survey is significant. Beverly Searle is CEO at Unique, a charity that supports families affected by rare chromosome disorders. The charity was set up in 1984. In 1999 they launched their first website.

"The internet and social media have made a huge difference to our ability to help support families," she says. "Our membership went up exponentially after we launched our first website in 1999. It meant that people affected by rare disorders could suddenly find us, and we were able to help them find one another."

Chart


How the internet has affected Unique's membership

In 2008 Unique set up a facebook page and subsequently, a number of private groups. The biggest private group has nearly 5000 members, most of whom are parent carers. The conversations on it reveal an active, honest and supportive group of users. "Facebook brought about another sea change for us," says Beverly. "People go straight there when they want to find something out these days, so more and more people are finding us there. What is amazing about the private groups is to see just how many people are using it to access one-to-one support from other parents. Sometimes because they have literally no-one else to turn to. It's incredibly powerful."

Advocacy services, run either by local councils, or more often charities, are another important source of external support, but they are dependent on funding and rare.

What sets them apart from other services is that they focus on the parent's needs rather than the child's. Parents in Partnership in Croydon run an advocacy service. Sharon Scott says, "It helps to protect the parents' on-going relationships with the professionals they are dealing with and makes sure their voice is heard."

Mind in Croydon also ran a service. "Advocacy gives the parent a safe space to say what they need to say," says Nicola Harris, Independent Mental Health Advocate at Mind. "We focus purely on them and their needs, something that often gets overlooked in a child-centred process." Nicola's programme was a casualty when its funding ran out. "It's a real shame," she says. "We made a tangible difference to many people. But there is still a lot of work to be done, and there are no existing agencies that focus purely on the parent."

Chapter 6

"That day I thought the world had ended. Actually it turned out to be a whole new beginning"

Listen: Hayley, Croydon, mother of Alex and Sophie

Exploring the special needs parenting community through the people and organisations who are a part of it, and reading the many blogs and websites such as The Mighty and Special Needs Jungle - it's clear that it is dynamic and proactive.

It is a community forged from shared experience, positive as well as negative. Many people interviewed talked of great friendships they had formed with other parents or professionals that supported them. For Sasha, it was her portage worker and a fellow horse-riding SEN parent, who are now her best friends. For Helen, it was an outreach worker, "Meeting her was a real turning point because I just felt that here was someone who I could talk to about anything". Sally's* daughter's community paediatrician regularly goes beyond the call of duty for them, "She has been our hero. She's always there if we need her."

And fifteen years after Max was born in the Queen Charlotte Hospital, his mother Sophie has become a kind of 'poster parent' of the special needs world. She runs a local SEN support network. Her social media feeds are full of signposting to services, training courses and inclusive leisure activities. "My salvation as a mother of a child with special needs has been education, education, education," she says. "I've discovered that there are so many brilliant things going on for adults with learning disabilities. Having that knowledge earlier on would help parents who are very gloomy after the diagnosis of their child." She is an advocate of the positive aspects of special needs parenting. "Would I have my life again, with Max normal?" she says. "Well good grief no, it would be beyond belief! I would have been a completely different person. I enjoy the whole business enormously."

Sophie navigated her way out of the chronic sorrow and depression that many parents experience. But she had to do it on her own. "Those first two years were miserable," she says. "There was no emotional support, and I just felt endlessly guilty about all the things I should be doing with Max." She also acknowledges that she has resources that not all parents can draw on. "I dwell on the guilt that if I fight for something, another parent, less able to fight, might lose out."

But this resilient community is not always enough. Parents overwhelmingly agreed that professional support for their mental health issues was usually missing from their lives. 90 per cent of them felt that treatment of some kind would have helped them.

Counselling is a non-judgemental space where you can talk about all the things that you feel you can't usually. In an effective Therapeutic Relationship, there is the opportunity to give a person who is struggling a new sense of perspective and connect them to their emotional selves. We all carry around all sorts of emotional responses that can be unhelpful to us. If we can sort these through, we can function much better."
Emma Sice, Counsellor

For those that can access it, treatment may be a lifeline. But it is clear that there simply are not enough opportunities for parent carers to receive the help they need. For those that can't, people like Sophie and charities like Unique and Parents in Partnership are the connecting threads in a network of support. A network that has been amplified and stretched around the world by technology, helping to shelter families from isolation. As Beverly of Unique put it:

"There is strength in numbers, and these parents need to be a part of this great groundswell, this army of community that technology has enabled."

About

Some names in this article have been changed at the interviewee's request. This is denoted by '*'.

This project was part of a Masters in Digital Journalism from Goldsmiths University.

The author, Laura Woodroffe is herself the Mother of a child with a rare disorder. She was inspired to research the support that other parents in her situation recieved, after hearing many similar stories from parents. And after experiencing first-hand the level of support available from the community online.

To Rebecca Farquarson, Helen Burness, Sophie Sainty, Sasha Cole, Theresa*, Sally*, Kate Bozek, Kate Slogar, Hayley Browne and Violaine for sharing your stories in such detail.

To Sharon Scott, Judith Lunnon, Nicola Harris and Beverley Searle for your expert contributions.

To Emma Sice for spending so much time explaining a therapists view of things.

To the 154 parents who completed the survey.

To Miranda Maclachlan and Andrew Freeman at Goldsmiths for their brilliant teaching and patience.

To family and friends for all their support, especially James Toop.

Laura is also a freelance content strategist and copywriter.