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Thought how useful the reply might be to some of you when a friend/relative says they want to help but they don’t know how to…..

0 Comments | This entry was posted on Jun 01 2017

Dear Graham Norton: ‘My stressed-out sister’s at breaking point – how can we take the pressure off her?’

Graham Norton
27 MAY 2017 • 7:00AM

Dear Graham

I was wondering if you could advise my sister. She is 43 years-old, married with two children, one of whom is autistic (he is nine, his sister eight).

Her husband is unable to work or drive for health reasons, so she does everything in the house and with the children. She works part-time and just about covers the bills. They have no mortgage, having both sold their previous houses, but still it’s a struggle financially.

We help out when we can, but it’s clearly wearing her down. She is talking about paying for someone to take her children out at weekends, as she says she can’t cope with them. But I don’t see how they can afford to do that more than once or twice.

I’m starting to feel concerned for her mental health but I don’t know what more we can do. Do you have any suggestions?

Anon, via email

Dear Anon

Obviously money is an issue for your sister; but it seems to me that the far more pressing problem here is time. She needs a break and, happily, she knows it and is planning to do something about it.

Perhaps it won’t be practical to pay for help every weekend – but just knowing that at some point she can step off the treadmill for a while is bound to improve her outlook on life and make the situation she finds herself in more tolerable.

You don’t specify whether the help you give her involves money or childcare: if it’s the former, that’s very welcome, I am sure; but maybe it would be even better if you occasionally took her children out for the day or had them for a sleepover during the week.

Be the person she can talk to

Although things are very difficult for your sister, they may improve once her daughter becomes more independent. Presumably she has already investigated what help is available from social services with regard to her son.

She needs to figure out a way of coping that she can maintain for the long haul. This is a marathon, not a sprint. After nine years it seems she has hit the wall, and it is time to re-evaluate things.

Be the person she can talk to. Allow her to vent her fury at life. There will be days when she hates her husband and her children, and you need to let her know that is OK.

I imagine that one of the hardest things about your sister’s situation is how alone she sometimes feels. She is single-handedly keeping the show on the road. No one expects you to join her every step of the way; but simply knowing that you have her back – and can offer an extra pair of hands occasionally – may mean the difference between coping and not.

A mother’s howl of anguish: Caring for severely autistic son ‘I found him blood-covered, banging his head against the wall, but all I could do was go back to bed’: Mother of severely autistic son, 26, says there is no help available from the NHS in a crisis

0 Comments | This entry was posted on Jun 01 2017

A mother’s howl of anguish: Caring for severely autistic son

  • For 26 years Jan Lane put her needs aside to care for her severely autistic son
  • She lost a career and two marriages in the process – but now is speaking out
  • Finding out just how little specialist help is available for Luke will make you angry
  • Jan says: ‘In a crisis, no care is provided, it seems, except medication’

The anguished howls that woke me in the early hours of the morning sounded more animal than human, but I knew instinctively that it was my son Luke, lost in a pit of despair.

He is autistic, the result of the encephalitis he contracted as a seven-week-old baby, which left him with invisible brain damage. He also suffers from chronic anxiety which, untreated, can cause debilitating depression.

For the past 26 years, I’ve always slept on the brink of alertness, ears attuned to the slightest sound that might indicate Luke is in distress and about to wreak harm on himself or havoc on our home. Twice in his life he has tried to kill himself, so I live with the perpetual sick fear that a third attempt might prove successful.

For 26 years Jan Lane put her needs aside to care for her severely autistic son, Luke

For 26 years Jan Lane put her needs aside to care for her severely autistic son, Luke

But in the half-light of that morning, ten weeks ago, I stumbled from my bed and took perverse comfort in the fact that the unearthly noise Luke was making indicated that at least he was still alive.

I heard the rhythmic thud of something repeatedly hitting the kitchen floor and, opening the door, I realised it was Luke’s head. Laid out in front of him, with forensic precision, were two kitchen knives, two screw drivers and a sharp blade.

I did not realise until later that morning — when I saw the sofa splattered in blood — that Luke had already been slashing at his arms with the blade. He had also carved an obscenity into his leg, indicating the depths of his self-loathing.

He hadn’t spoken a word for the previous two weeks, and was inflicting physical pain on himself to deflect from the mental anguish that was torturing him.

It is a measure of how dreadful his torment is at times like this that he would rather suffer almost any amount of tangible pain than have to endure the tumult in his mind.

So what did I do when faced with this terrible scene? Did I run to the telephone and dial a well-remembered and trusted number? Did I scramble a team of highly trained professionals to swoop in and rescue my poor boy — and me — from this unbearable situation, so they could give him the urgent specialist psychiatric care, and me the rest, we so desperately need?

Finding out just how little specialist help is available for Luke will make you angry

Finding out just how little specialist help is available for Luke will make you angry

No, I didn’t. I went back to bed. That help is not there — it never has been. I’m on my own with this problem, and totally out of my depth.

There was nothing I could do for my boy. He wouldn’t let me touch or comfort him, and made it clear he wanted to be on his own. All I could do was crawl back under the duvet and pray for him to get better. In time, he calmed down.

Two kind and well-meaning professionals, our GP and a mental health nurse, have seen Luke during the recent weeks of this latest crisis, but I suspect they, too, feel out of their depth. Our doctor prescribed powerful drugs — intended to calm him, lift his mood and make him sleep — but they seem to just render him temporarily oblivious. It does not deal with his pain or the underlying cause.

The truth is our overstretched NHS simply has not got the resources — or, it seems, the expertise — to look after my son. It can take weeks, or months, for an appointment. I have to fight for everything, and I don’t always win. So I write now, in despair.

 The truth is our overstretched NHS simply has not got the resources — or, it seems, the expertise — to look after my son. It can take weeks, or months, for an appointment. I have to fight for everything, and I don’t always win. So I write now, in despair – Jan Lane

Prince Harry has brought mental health to the forefront of our minds by speaking out about the depression he suffered when his mother Diana died. While I do not want to demean the helpfulness of this brave gesture of solidarity with others who suffer the quiet torture of mental illness, what young men like Luke need are not words, but deeds.

This is what our health service — focused on physical well-being — apparently cannot offer us. In a crisis, no care is provided, it seems, except medication.

My life revolves around Luke. I scratch by, barely coping financially or emotionally, as I am his support system. It has cost me my career and two marriages.

Before his birth and subsequent illness, I was the treasurer of a private merchant bank in Bristol, married to my first husband (Luke’s dad), who ran a successful courier company. We had a lovely home we’d built ourselves, set in a third of an acre of Wiltshire countryside.

Luke was conceived during a skiing holiday in Verbier, Switzerland. I intended to go back to work three months after his birth, but of course, I haven’t been able to work a day since.

I adore Luke with a fierce maternal love, but he is hell to live with and is the main reason for the breakdown of my first marriage, and the cause of my second divorce four years ago. Not many people can cope with this intense level of parenting. Now it is just Luke and me, battling against all the odds.

Luke has so many labels he once had business cards printed with all the letters after his name — he has a quirky sense of humour and a love of irony.

My PROUDEST ‘mum moment’ came when he was chosen to carry the Olympic torch in 2012. In 2011, he also went to Parliament to launch an initiative to make banking easier for people with disabilities

My PROUDEST ‘mum moment’ came when he was chosen to carry the Olympic torch in 2012. In 2011, he also went to Parliament to launch an initiative to make banking easier for people with disabilities

Aside from his autism, he has attention deficit hyperactivity disorder (ADHD), which, allied to his anxiety and depression, is an explosive mix. He also has Tourette’s syndrome — uncontrollable outbursts known as tics — and pica disorder, which means, like a dog, he chews and eats inanimate objects like TV remote controls, fabrics, wrappers, wine corks and so on.

I don’t think a day of his life has gone by when he hasn’t vomited — either through anxiety or because he has eaten an indigestible item or something tastes or smells ‘wrong’ to him.

Frustration often makes him violent, too. The walls and doors of our home near Chippenham, Wiltshire, are dented with the imprints of his fists. He lives in a perpetual mess, his bedroom is every mum’s nightmare and he has little short-term memory.

He can be funny, angry, aggressive, misogynistic, politically incorrect and pedantic.

 I don’t think a day of his life has gone by when he hasn’t vomited — either through anxiety or because he has eaten an indigestible item or something tastes or smells ‘wrong’ to him

He also has a sharp insight into his condition, which, in a sense, makes it harder for him to bear. Were his autism more severe, he would be blissfully oblivious to the differences which set him apart from others. As it is, he is painfully aware of them, while unable to change himself to suit other’s expectations of him.

But Luke also has talent, wit, charm and an unerring ear for mimicry and impersonation. At his best, he is a hugely entertaining character. Given the right environment and the support of experts who understand his condition, Luke thrives. Without specialist guidance — adrift in the world — he sinks.

We know this because while he was at mainstream school he started to flounder and was expelled, aged 15, for retaliating against the bullies who had systematically tormented him because he didn’t fit in. After that, he slit his wrists, his first suicide attempt — he thought he had failed at everything and it took this level of despair to finally get him a place at a special school in Wiltshire.

Here, because he was given the expert help and support he needed by the incredible headmaster, Mr Williams, Luke thrived, calling himself ‘the best of the worst’ instead of being ‘the worst of the best’. He became an ambassador for two national charities and proved himself as a leader and an inspiration to others with his conditions.

 Luke has so many labels he once had business cards printed with all the letters after his name — he has a quirky sense of humour and a love of irony

Six years ago, as youth patron for the charity Ambitious about Autism, he completed a five-day trek across the Arctic, mentoring pupils from his former school: this was filmed for the BBC and Luke provided the commentary.

My PROUDEST ‘mum moment’ came when he was chosen to carry the Olympic torch in 2012. In 2011, he also went to Parliament to launch an initiative to make banking easier for people with disabilities.

However, since Luke left school at 18 he has desperately wanted to be independent and support himself, but this has proved impossible without the appropriate understanding.

He has the attention span of a flea, a toddler’s emotions and propensity for tantrums, and the strength and intellect of a man. Left to fend for himself in a world he finds totally alien, how can he survive?

He has had a succession of jobs, but as he has been beset by such paralysing anxiety they have been cut short.

He worked at a supermarket checkout, but suffered panic attacks which caused him to vomit, before being transferred to the warehouse, where his social anxiety and sensory overload became debilitating. Two years ago, Luke took an overdose of his prescription pills. My daughter Abbi, 23, and I found him unconscious. A note beside him thanked us for our ‘futile’ attempts to help him and concluded, heartbreakingly: ‘I am beyond help.’

It is a measure of his desperation that when the paramedics arrived and Luke was resuscitated, he reproached himself for failing in his attempt to end it all.

He wasn’t sectioned then — he should have been, for his own safety — as there was nowhere to take him. The paramedics read a book I have written about Luke while caring for him. I wanted them to understand that he’s not mad or bad, he’s autistic.

'It is a measure of his desperation that when the paramedics arrived and Luke was resuscitated, he reproached himself for failing in his attempt to end it all'

‘It is a measure of his desperation that when the paramedics arrived and Luke was resuscitated, he reproached himself for failing in his attempt to end it all’

And so we have survived, until ten weeks ago, when this latest breakdown happened.

There was no obvious cause for it: Luke had been working on a self-employed basis with a local builder and was loving the job. He is adept at carpentry — a skill he has largely taught himself — and seemed to be coping so well.

The day before, we’d had a lovely family party to celebrate the birthdays of my dad and one of my three sisters.

Then it was as if a switch flipped in his head. The awfulness began. He could not leave his bedroom; nor could he sleep unless dosed to oblivion on his prescription pills.

I spoke to our GP, who, although kind and supportive, is out of his depth with Luke’s conditions. He prescribed antidepressants.

We soldiered on, Luke and I, until the night I came downstairs to find him howling like an animal, in such palpable mental pain that no parent can bear to witness.

The next working day, I consulted his GP and requested an urgent crisis referral to a psychiatrist. We waited three weeks for this appointment. It makes me boil with rage that there is no emergency care available for Luke.

The mental health nurse we saw was superbly caring, but has no experience of autism, so we again found ourselves in limbo.

She said she would recommend that we should be referred to a specialist unit in Bath, with a psychiatrist equipped to deal with Luke’s needs, but first we must fulfil several criteria. What these are I have yet to find out.

 Then it was as if a switch flipped in his head. The awfulness began. He could not leave his bedroom; nor could he sleep unless dosed to oblivion on his prescription pills

The nurse has told us that we will have to ‘fight’ to get Luke this help. ‘Who are we fighting?’ I asked.

My whole life is a fight, I am exhausted with fighting. I find myself preparing to battle an unknown adversary as, once again, I pursue a relentless quest to get my son the help he needs. Broken promises for better help litter Luke’s life.

I am so angry there is such scant and inadequate support for those, like my beloved boy, who try so hard to embrace their difficulties and yet always live life close to the edge.

If Luke had lost his legs when he was so ill as a baby, we would have had immediate and lifelong care. But as his conditions are invisible, we are isolated. Consequently, Luke feels ashamed of himself.

Often, I ask myself how he’d cope without me to manage him, and the answer scares me, because I think he would either be homeless, dead or in prison.

A friend of Luke’s, a young woman with similar difficulties to him, took her own life two months ago and, in the midst of our shocked grief I begged Luke: ‘Please, please tell me you’d never do that.’

The answer he gave chilled me. He said: ‘I can’t promise you I won’t.’ It was the most harrowing thing a child could say to a parent. It utterly broke my heart. How bad does it have to be before help is forthcoming for my Luke and all the other Lukes out there?

It took eight exhausting weeks before our GP finally received the written recommendation from the mental health team that Luke requires an ‘urgent’ referral to the specialist unit in Bath.

Our GP agreed to try and secure the funding for us. When I asked how long this will take he replied: ‘It’s a waiting game.’

You may consider me cynical, but I believe those who run our inadequate and over-stretched mental health services take the view that if they procrastinate long enough, the problem could just be solved for them. It might simply be too late.

LIFE at the Edge And Beyond by Jan Lane (formerly Greenman) was published in 2010 by Jessica Kingsley

Read more: http://www.dailymail.co.uk/femail/article-4559928/A-mother-s-howl-anguish-Caring-severely-autistic.html#ixzz4ijfx0o4p
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From The Washington Post – ‘In ‘Shtum,’ parents wreck their home to find a better one for their autistic son.’ Such an honest book – thanks Jem Lester x

0 Comments | This entry was posted on May 25 2017

To write a novel about someone who has severe autism is to grapple with a paradox. After all, severe autism repels language, turns it chaotic or, in the case of autistic mut­ism, simply absorbs it wholesale, as a black hole does light. This hasn’t, of course, kept fiction writers from regularly using autistic and developmentally disabled narrators and protagonists in their work.

In “Shtum,” a moving, darkly funny new novel by British journalist Jem Lester, who is the father of a severely autistic child, the narrator is a somewhat dissolute 30-something man named Benjamin Jewell. The main subject of the novel, however, is Benjamin’s 10-year-old son, Jonah, who is autistic and mute. “His mind,” the father says memorably of Jonah, “is like a dictionary with the pages glued together.”

As heart-rending as mutism in severe autism is, it often arrives with the particularly cruel backstory of a child who speaks somewhat normally in the first year or two of life and then gradually, mysteriously relinquishes language until disappearing entirely into silence. As Ben observes, “Jonah was born and it was fluffy clouds and sleepless nights. But as he reached three, the fairy tale revealed itself an impostor — the red hood fell away to show the Big Bad Wolf of autism.”

“Shtum” opens on that crossroads moment that afflicts all parents of children with severe autism: where and how to place the child in a residential facility. No matter the good intentions of the parents or how self-sacrificing their desire to keep their child at home, adolescence, with its onrush of agitating hormones, tends to make home care an impossibility. In the case of Jonah, he’s still in diapers at age 10, and on an average day, he paints the walls with his feces, burgles the fridge for food that he then flings around the house, bites his father and takes the majority of his rage out on himself.

Yet as disabled as Jonah is, he may not, it turns out, be autistic enough. He may not, in other words, qualify for the luxurious, garden-like Highgrove Manor School, which costs a staggering 200,000 pounds a year, all of it provided by the state. He may have to remain “in borough” and make do with the local, far less impressive and less costly Maureen Mitchell Secondary School. As his mother, Emma, says poignantly, “We’re being punished because we love and care for him and he’s not as good at autism as he could be.” To which Ben responds, “He’ll never play autism for England.”

Although it is typically mothers who do the heavy lifting in families with disabled children, in “Shtum,” it is Ben, a perennially underemployed alcoholic, who is the devoted and central parent. Emma loves their child no less, but as a lawyer and a highly organized careerist, she is simply less available.

Their response to the quandary of where to place their child is to pretend to divorce, in the belief that Jonah will be more readily taken by the expensive facility if his home life seems to depend on a single parent (why this would convince a judge to make such a choice is never made exactly clear). To that end, Ben and Jonah move out of their home and take up with Ben’s elderly father. The portrait of the father, a cantankerous yet loving Hungarian Jewish refugee from World War II, is one of the surprise pleasures of the book. And the midsection of the novel, which describes the way the sham divorce slowly becomes a real divorce while the grandfather and Jonah bond without words, is deeply affecting.

What “Shtum” does do well, and memorably, is describe the ferocity of attachment a parent feels toward a disabled child. It unsentimentally lays out the terrain such a parent must negotiate both at home and institutionally, and paints a vivid portrait of a family under siege by this most mysterious of contemporary maladies. To its credit, “Shtum” proposes humor as a balm in even the darkest of situations. If paying detailed attention to one’s characters is a form of love, it is also a powerful, and even remarkable, love letter to a child.

KEEP FIGHTING … xx

0 Comments | This entry was posted on May 24 2017

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Bang Said The Gun for Fred

0 Comments | This entry was posted on May 23 2017

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HAPPY EASTER! LOOK AFTER YOURSELVES MUMS AND DADS, EASIER SAID THAN DONE WE KNOW XX

0 Comments | This entry was posted on Apr 16 2017

Fighting Caregiver Burnout

The Arts are SO important

0 Comments | This entry was posted on Mar 31 2017

http://www.artswork.org.uk/news/spotlight-on-priors-court-school-and-their-artsmark-journey/

0 Comments | This entry was posted on Mar 26 2017
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Mum reveals fighting for her autistic son left her so desperate she Googled ‘gentlest ways to die’……

0 Comments | This entry was posted on Jan 13 2017

Cheryl Joyce, 36, has spent the past eight years fighting for her autistic son, Liam – at the expense of her own mental health

Cheryl Joyce has spent the past eight years fighting for her autistic son, Liam
Cheryl Joyce has spent the past eight years fighting for her autistic son, Liam (Photo: Copy Media)

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’.

Cheryl, pictured with Liam at a younger age, said battling for her boy left her feeling like she had to "end it"
Cheryl, pictured with Liam at a younger age, said battling for her boy left her feeling like she had to “end it” (Photo: Copy Media)
The 36-year-old said her son is now at a "wonderful school"
The 36-year-old said her son is now at a “wonderful school” (Photo: Copy Media)

“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.

Cheryl is pictured with Liam, her husband, Tony, and her daughters, Isabella (front) and Summer
Cheryl is pictured with Liam, her husband, Tony, and her daughters, Isabella (front) and Summer (Photo: Copy Media)
When Liam, now 10, was born in 2006 there was no indication anything was wrong
When Liam, now 10, was born in 2006 there was no indication anything was wrong (Photo: Copy Media)

“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.

Liam met all of his milestones; could name shapes, colours and numbers and had a great memory
Liam met all of his milestones; could name shapes, colours and numbers and had a great memory(Photo: Copy Media)
However, the youngster then regressed and was diagnosed with a severe form of autism
However, the youngster then regressed and was diagnosed with a severe form of autism (Photo: Copy Media)

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.

Cheryl said she had an emotional breakdown and "kicked off" at a police officer
Cheryl said she had an emotional breakdown and “kicked off” at a police officer (Photo: Copy Media)

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?”

"My job as a government procurement manager was about solving problems – why couldn’t I solve this one?” asked the mum
“My job as a government procurement manager was about solving problems – why couldn’t I solve this one?” asked the mum (Photo: Copy Media)

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.

Cheryl said a therapy called Applied Behavioural Analysis (ABA) helped her son
Cheryl said a therapy called Applied Behavioural Analysis (ABA) helped her son (Photo: Copy Media)

“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 started writing three years ago as an escape from the pressures and challenges of daily life
Cheryl started writing three years ago as an escape from the pressures and challenges of daily life(Photo: Copy Media)

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.

The mum-of-three says she is "cross" that she has had to fight for what is best for Liam every day since his diagnosis
The mum-of-three says she is “cross” that she has had to fight for what is best for Liam every day since his diagnosis (Photo: Copy Media)

“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…..“I Feel As If I’m the One Who is Disabled”

0 Comments | This entry was posted on Jan 10 2017

For the mothers the world has left behind 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.

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