Mum reveals fighting for her autistic son left her so desperate she Googled ‘gentlest ways to die’……
Cheryl Joyce, 36, has spent the past eight years fighting for her autistic son, Liam – at the expense of her own mental health
Sitting down alone at her computer at 2am, after an argument with her husband, Cheryl Joyce felt desperate and completely lost.
For eight years, she had desperately fought for her autistic son, Liam, trying to give him the best therapy and childhood possible.
But now, she had reached a point where she felt like the only option was to “end it”.
Staring at the screen at her Merseyside home, the mum-of-three found herself Googling the words: “The gentlest ways to die…”
After numerous breakdowns, thoughts of self-harming and feelings of sadness and anger, she says she had finally “had enough”.
But thankfully, the thought of leaving her young children – something she “couldn’t” do – prevented her from ‘ending it’.
“I knew I needed help when I found myself Googling ‘the gentlest way to die’,” said the 36-year-old. “I had had enough.
“I wanted it over with so I wouldn’t have to carry on feeling like I did.
“I had suffered breakdowns, considered harming myself and then, the only way seemed to be to end it.”
It was Cheryl’s children, though, who ultimately saved her and kept her going.
“I couldn’t leave them,” said the mum, whose struggles had seen her gain two dress sizes, lose friends and become isolated.
“And as I Googled ways to take my life, a verse popped up ‘I have set before you life and death, blessings and curses.
‘Now choose life, so that you and your children may live.’
The verse is from Deuteronomy 30:19.
She smiled: “I never thought I would have a tattoo, but it inspired me to get one with an angelic symbol meaning ‘Choose Life’.
Cheryl had only ever wanted the best for Liam, who was diagnosed with autism when he was three years old.
But her battle for her adorable boy came with a cost – her own mental health.
When Liam, now 10, was born in 2006 there was no indication anything was wrong.
He was meeting all his milestones; could name shapes, colours and numbers and had a great memory.
“We thought we had a little genius on our hands,” said Cheryl.
“But then he regressed and it was like Liam had been taken away and replaced by another child.
“He was eventually diagnosed with a severe form of autism.
“I remember feeling like the world was attacking me. I was emotional and angry, and was upsetting everyone around me.
“I had an emotional breakdown when I found myself kicking off at a policeman who said I had a bad attitude, which is not me.
“But I felt I had completely lost my identity.”
Cheryl managed to get herself well with counselling sessions.
She got to the point where she and her husband, Tony, wanted to have another baby, partly because they wanted a sibling for Liam.
But she ended up raising a newborn, Isabella, at the same time as she was trying to toilet train a four-year- old son, and deal with his sleep and communication issues.
Cheryl said she ended up feeling “exhausted’ and like a “complete failure”, with Liam only sleeping for about two hours every night.
“I asked for help from the disability social worker but was refused as they said his sleep problems were expected for a child of his age,” she claimed.
“I became severely depressed, not wanting to go out, not getting dressed.
“My job as a government procurement manager was about solving problems – why couldn’t I solve this one?”
After more counselling, Cheryl decided to return to work to give her something else to focus on.
She added: “A few months later, we found a therapy that actually helped Liam, Applied Behavioural Analysis (ABA).
“On his very first session the therapist got him saying 100 words, including mummy and daddy, and helping with other skills such as toileting.
“It gave me hope but was very expensive, costing £60 an hour for a qualified therapist and £7.50-£15 per hour for tutors.”
Cheryl said she and Tony fundraised to help pay for the therapy – and some of the costs for school were covered by the council.
However, she said the couple had to pay for the costs at home – something that became difficult following a change in work situation.
“During this time, my husband was made redundant and had to change job, taking a significant drop in pay, which meant the pressure of paying for Liam’s therapy and keeping a roof over our heads fell to me,” she said.
“When, in 2011, I fell pregnant with our third child, Summer – unexpectedly – my mental well-being plummeted further.
“This time I needed medication as I was starting to have harmful thoughts and every time I tried to come off them, I couldn’t cope.
“And, as much as the antidepressants help with the sadness, they suppress the happiness too.
“I looked around at my beautiful family, the progress Liam had made, I couldn’t feel anything.
“I tried to come off the tablets again… and that’s when I thought it would be easier if I wasn’t here.”
Cheryl had previously arranged for Liam to undergo biomedical treatment, a combination of diet, nutritional supplements and detoxification.
However, this was also expensive, involving tests and consultations with nutritional therapists that cost the youngster’s parents at least £170.
Cheryl said there were a number of other potential therapies that she and Tony were unable to consider due to the price.
The mum started writing three years ago as an escape from the pressures and challenges of daily life.
She has recently self-published a novel, The Grass is Darker, about a modern day woman, Danielle, a wife, a mother and a businesswoman, and her struggle with everyday life. Like many, Danielle thinks an affair is the answer.
“I needed to write the book to prove to myself I wasn’t a failure,” said Cheryl.
“To remind me of the strength I have inside. That although sometimes I feel weak, at other times I feel invincible.
“This sort of stress can destroy marriages too but, thankfully, it brought Tony and I closer together – we go for walks up Snowdon to remind ourselves that we are strong and we have a life worth living.
“The battle goes on with Liam but we have now found a wonderful school for him where he can go until he is 25.
“I will never feel angry or bitter towards my boy, but I am cross that every day since he was diagnosed I have had to fight for what is best for him and that shouldn’t happen. I paid with my own health and that can’t be right.”
For the mothers the world has left behind http://www.huffingtonpost.com/entry/the-ones-they-left-behind_us_585b479ce4b014e7c72eda33?ncid=engmodushpmg00000004 … via
I composed my resignation letter slowly and tearfully. After two years at a job I loved, I was forced to resign. I had chosen my employer carefully: I worked for a children’s hospital that served families who had children just like mine. I had given my whole heart to my job, but in the end, had received little in return.
The official word is that I left because of my son, Aaron, who has Down syndrome. The unofficial – and truer – reason is more complicated than that.
I left paid work because my son is 13 and now too old for daycare. He can’t be left home alone, never mind find his way back and forth to school like most 13-year-old kids. While there are rare childcare spots for youth with disabilities, they can be only accessed by meeting narrow criteria at the Ministry of Child and Family Development. But my son doesn’t have the right diagnosis to secure one of those coveted spots.
Add to that, the school day in special education in high school is shortened – meaning fewer work hours are available between drop off and pick up time. I also need to be visible at school – to build relationships with teachers, to attend meetings and to respond to the occasional phone calls to pick him up early. My son also has medical appointments and therapies that are all scheduled during the workday.
These are all system problems, not Aaron problems. There is a distinct lack of support from our government for parents of children with disabilities. This gap makes it difficult to contribute to the paid workforce. Many ministries willingly contribute to the problem: Education, Child and Family Development and Health.
There is a distinct lack of support from our government for parents of children with disabilities.
Earlier this year, I asked my employer for a more flexible work environment so I could be available for my son. I wrote a proposal asking to be converted to contract, where I’d be onsite for meetings, but would work outside of the constraints of typical office hours. I was told no –- Human Resources would not allow this arrangement. This was an ego-shattering conversation, as it was clear that accommodations would not be made for me.
Workplaces that are neither family-friendly nor flexible are also not Aaron’s fault. This is an issue that affects mostly women, who statistically make less money than their male partners and are the ones in a relationship who typically have to drop out of paid work. This is a feminist issue.
I’ve been asking my community of moms who have children with disabilities what they do about paid work. Many moms do work when their kids are young – this is when daycare spots for kids with disabilities are more plentiful – if they can get to the top of the long wait lists. Other moms have teenagers and have been forced to opt out of paid work. And some have flexible employers – although these types of employers are sadly the exception. Yet others piece together a freelancing life, picking up work here and there, like I do now.
Many families slowly inch their way towards poverty. We bleed money every month. Ironically we need a higher income even more than we did with any of our other kids. We pay for our son’s therapies out of pocket and we need to save for his adulthood because of the abysmal government rates of disability assistance that loom in his future.
“I left my job I had for 20 years when my son started high school, too,” one mom told me last week over coffee. When he was younger, they had cobbled together care with grandparents, but their son’s needs became more pronounced when he hit adolescence and the grandparents inevitably aged – the arrangement no longer worked. So the mom had to resign.
While I was employed, I didn’t think about the single moms or the families teetering on the brink of poverty because the system made it impossible for one parent to work.
Other moms have left established careers to become Educational Assistants in the school system -– low-paying, but at least the work hours paralleled their children’s school hours. One nurse left her profession to be a part-time receptionist. Other moms have to opt of the paid workforce entirely to concentrate on homeschooling, unpaid advocacy or caregiving work instead.
We make work literally work, somehow. While I was employed, I didn’t think about the single moms or the families teetering on the brink of poverty because the system made it impossible for one parent to work. But I’m thinking about it now, a lot, having been soundly humbled and sitting here in my (relative) place of privilege.
As with many of the issues in the disability world that are not okay, the lack of support to allow women who have children with disabilities to work is also not okay. This is an equity issue. Women with typically-developing children have fought for many years to have choice – to choose to stay at home or to choose to work. This choice is automatically taken away from women who have children with extra needs.
Ellen K. Scott from the University of Oregon wrote an excellent paper called “I Feel As If I’m the One Who is Disabled: The emotional impact of changed employment trajectories of mothers caring for children with disabilities.” In it, she says:
“…mothers mourned an identity transformed and the loss of an essential part of themselves. They blamed the lack of alternative care, the inflexibility of the employers, and their child’s (or in some cases children’s) extraordinary needs, which required extensive direct and advocacy care.”
Our kids’ needs are only one part of this formula. How do our governments and workplaces support – or fail to support – those of us who care for vulnerable children? This is an important equity and economic question. We are the mothers who feminism – and the world – has left behind.
Please go onto www.justgiving.com/henrynormalfred and write your name(s) next to your payment. Venue: Jordans Village Hall, Green West Road, Jordans, Buckinghamshire HP9 2SY £10.00 (includes first drink!) Date: Mon 10 October 8-9.30pm (including interval) Then we will put your names on the door. No tickets will be issued. Thanks so much.
Alternatively, if you aren’t able to pay on-line, please pay in the Jordans village shop thank you to Emma Holdsworth and your name(s) will be put on the door after payment.
Nearest train station : Seer Green & Jordans Approx 10 minutes walk
Or – Gerrards Cross and Beaconsfield stations – 10 min taxi ride from there
All trains come out of Marylebone if coming from London.
Approx. 20 mins. by car from West London
It’s been 20 years since Henry Normal’s poetry got an airing on the wireless, but A Normal Family (Radio 4) is so moving and cheery it’s worth the wait.
Normal, who’s perhaps best known for co-writing The Royle Family and The Mrs Merton Show, goes back to his roots in a show that’s part stand-up, part poetry recital and a total outpouring of love for his autistic son Johnny.
“I remember saying to myself that he was going to have a better life than me,” says Normal, voice cracking with emotion as he recalls seeing his newborn baby Johnny for the first time. “Things that had held me back wouldn’t hold him back. I’d see to that.”
As the live audience falls silent, Normal times his brightening of the mood to comic perfection. “I’ve brought along a toilet roll, just in case,” he jokes. Johnny went to the zoo as a child and his favourite bit was a monkey bin; now his parents celebrate small victories, like the moment when he behaved like a typical teenager, shouting for the iPad. He’s a happy boy most of the time and his family tried everything to make things right. “Music therapy, art therapy … and of course swimming with dolphins,” says Normal. “Like any parent, we’d have skydived playing the ukulele if it would help.”
It’s a rare and lovely thing: half an hour of radio that stops you short, gently demands your attention and then wipes your tears away while you have to have a little sit down. The poems are succinct, heartrending and peppered with gentle punchlines. In King Canute Should Have Checked The Tides, Normal pays tribute to his family’s strength. “Bring on your highest wave,” he says. “The glory is ours. We live here. We own this weather.”
Parents Of Children With Autism Face ‘Exhausting Battles’ To Get Educational Support ‘This is putting an unnecessary strain on often already vulnerable families.’
Almost three quarters (74%) of parents found it difficult to get the educationalsupport their child needs, a survey of 980 parents and carers of children with autism by the National Autistic Society (NAS) revealed.
“Parents should not be facing long, stressful and exhausting battles, just to get the right education for their children,” said Mark Lever, chief executive of the NAS.
“This is putting an unnecessary strain on often already vulnerable families and risking the long-term prospects of the one in 100 autistic children in England, who have so much to contribute to our society.”
“With the right education and support, children on the autism spectrum can achieve great things and their families can live full and happy lives,” added Lever.
“Without it, families are left to struggle alone and children can miss out on years of education, putting them and our society at a huge disadvantage.”
The findings come two years after the Government introduced a new special educational needs and disability (SEND) system in England, with the aim of making it easier for children to get support and making the process less adversarial for families.
Asked about the survey’s findings a Department for Education spokesperson said: “We have made changes to the system of support for special educational needs and disability (SEND), which put families and children at their heart, making it less adversarial for them – and we are seeing good progress.
“Mediation is now available for anyone thinking about an appeal. This is seeing results with 75% of cases in 2015 resolved without the need to appeal that year, while the number of appeals is also on a downward trend.
“We’ve also invested in an advice service, run by the National Autistic Society, to help parents and teachers to help children with autism remain in school, and Ofsted and the Care Quality Commission (CQC) are now looking at how well local areas are providing for children with additional needs.”
The latest Government data shows that councils are delivering nearly 60% of new Education Health and Care (EHC) plans within 20 weeks, excluding exception cases.
However, among parents questioned in the NAS survey, 69% said their child waited more than a year for support after concerns were first raised, and 16% waited more than three years to get support.
“The Government tried to fix the education system for children with special educational needs but many of the same problems remain,” said Lever.
“Too many parents are having to take legal action to get basic support for their children and education, health and care services still aren’t working together as the Government says they should.”
There are an estimated 120,000 school-aged children on the autism spectrum in England. The vast majority (73%) are in mainstream schools and many rely on the SEND system.
For some children this will mean minor adjustments, like having time out from a busy classroom or a teaching assistant to help them process their thoughts. Others, who perhaps have an extreme sensitivity to light or sound, or who are unable to communicate verbally, may need a much higher level of support at a specialist school.
Although the majority of parents surveyed by the National Autistic Society say their child is in their preferred type of school, many parents faced an uphill battle to get to this point – with 17% saying they took their local authority to an SEND Tribunal to get the right support.
The most common reasons reported for appealing were the local authority’s refusal to issue a statement or EHC plan, or to change the school named in the statement/plan.
The NAS is now calling on the Government to review how councils are implementing the new SEND system and, based on this, to decide whether additional resources are needed to complete the reforms by their 2018 deadline or whether more time is needed.
“The Government must take responsibility for its reforms and review how local councils are using the extra funding and what difference the reforms are making,” said Lever.
“The Government must then act, whether that’s increasing resources to complete the reforms by the 2018 deadline or delaying implementation until local authorities can fulfil their legal responsibilities properly.
“The most important thing is to make sure that the speed of the reforms don’t compromise the support children need.”
One mother told the NAS she has had two very different experiences getting support for her sons Cameron, 13, and Harry, 11, who are both autistic and struggled in mainstream schools.
“My son Cameron was heavily bullied at school and struggled with depression and anxiety,” explained Jody.
“I took the difficult decision to home-school him while I looked for more appropriate placement that met his need.
“I faced a huge battle and ended up going to an SEN Tribunal, which eventually ruled in my favour but took a heavy emotional toll on my family. But his latest placement recently broke down so I feel like I’m back to square one.
“Getting a SEN statement for my younger son Harry was much simpler and he’s doing well at an autism-specific school.
“His statement was recently transferred to an EHC plan, under the new system. It took around six months to finalise the plan and I’m very happy with its contents and how the school implemented it.
“Thankfully, Harry is continuing to flourish.”
The National Autistic Society run the Education Rights Service, which provides impartial, confidential information, advice and support on education rights and entitlements for parents and carers.