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A sister writes don’t forget about us…The Forgotten End of Autism

0 Comments | This entry was posted on Jan 17 2019

I spent last night in my room in peace. I went to bed around 11, watching a TV show and enjoying the silence of my house. My brother wasn’t home for the first time in a while, and we were able to relax for a few hours. The night before, I went to bed at 11, frustrated as I’d just had an argument with my mum. We were both exhausted as, for the fifth time that day, we’d dealt with my 17-year-old brother having a meltdown over – I kid you not – the Teletubbies.

There is no physical way to explain to someone who hasn’t experienced autism what the emotional labour is like on a family. It challenges one beyond what they think they can cope with, because it forces us to take a look at life’s fundamental question: what is the point?
The issue I broach is one that is rarely expressed in mainstream media and politics – that autism is not and never has been one uniform block of distinction. The actuality is this: autistic people are no more alike than neurotypical people; the condition is an intricate web of varying aptitudes, inabilities and struggles. There will never be an ‘accurate’ depiction of autism because it is not possible to instill the qualities of every autistic person into a single caricature, and that is widely acknowledged across the autism community.
Even so, there is a ‘general’ notion of an individual with autism. Lacking social skills, including eye contact and perception of emotion and tone. Sensory overload, instances of stimming. Whether we mean to or not, when we hear the word ‘autism’, we construct an image of what we assume the person mentioned will be like. We do not think of the ignored edge of the autistic spectrum.
The forgotten side of the spectrum falls to the “low-functioning” children; the ones who cannot feed themselves without making a mess, or perhaps not at all. The incontinent teenagers, the barely verbal adults. Those whose ‘mental age’ is much less than their physical. People like my brother, Stephen, who seem to exist only in their immediate family circle.
For us, it is simple yet heartbreaking. Stephen will never be able to live independently. He requires constant supervision, can’t talk beyond basic requests, can’t use the toilet or dress himself; he can’t so much as cross the road by himself. He doesn’t grasp the notions of money and spending, or even of life in general. His autism is so severe that his world revolves around a rigorous routine of school and home. He thinks in numbers and colours and children’s TV shows. In brutal honesty, I don’t believe he knows what day it is. ‘Mainstream’ is a word that hasn’t left our lips in years.
First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don’t see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.
Secondly, there is no general understanding of severe autism sought. I mean, who can I tell? Family rarely if ever come to visit him, be it for reasons of ignorance or genuine lack of awareness. There is only so much empathy my employers can show me when they have never met him. I worry that friends won’t comprehend, or that they won’t want to know him. I positively panic that potential boyfriends will be put off by him, or reject the idea that he has to come first in my life. The media show nobody like him; journalists don’t bother to highlight our situation. Politicians have never asked what we might need. We are completely and utterly alone at our side of the spectrum, in the dark and in the cold.
I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I’m going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?
And you know what? I love him so much. I love him more than anything in this world, because if anything he is pure. He doesn’t know anything of sickness and pain; he has no awareness of hatred. All he knows is his little bubble of love and care that we provide for him, and in some ways I envy him. He makes me laugh with his wittiness and smarts, and he has kept me going through some rough times. He is a positive influence on my life, and I am not taking away from what he is or has done for me.
But the reality is this: we are tired, and we are alone. Families on the severe end of the spectrum feel they cannot write into support groups, because often their experiences feel too extreme. It is impossible to ever establish a sense of normality, or to lull ourselves into the illusion that things will get better. Our children and family members are not just struggling socially, but struggling merely to exist, to function. With no consciousness among the general public of how hard it truly is, there is no relief from this feeling. We simply have to get on with it. We must continue to take care and love a person who will never comprehend what we have done for him, how much we have sacrificed for him, and will never thank us for it.
Understand this also: if you are part of a neurotypical family, you take much for granted that we will never experience. Family dinners out don’t exist. Holidays could never happen. Stephen will never attend a school disco, bring friends over for dinner, or bring home a partner. I will never get to ask him, “do you want kids?” There will be no wedding for me to attend. Never will he have the satisfaction of a job, a home, a sense of fulfilment in this world.
This is what makes my heart ache the most: my brother simply doesn’t understand his own existence.
This is why, when asked the loaded and complicated question of, “would you take away Stephen’s autism if you could?”, my answer is yes. He doesn’t understand his actions, or the consequences of them – the hurt and exhaustion, but also the happiness and love, that he brings on our family. He makes no decisions about himself or his future, and has no comprehension of any normal, everyday concepts that we grasp so simply. We all want the best for our children; all Stephen wants is a box of Teletubbies and a can of Diet Coke.
We don’t have the luxury of forgetting about it. You probably don’t see these children often – families find it hard to take them out in public, as it is much too stressful and we are judged immensely. These children don’t attend your children’s schools; they simply pass you in traffic on a bus, so you don’t have to experience their presence. You have the luxury of avoiding “low-functioning” children altogether.  In a 24 hour, 7-week job, we do not.
The reality is that it cannot be taken away. Whatever becomes of us, we will continue caring for Stephen far into the future. All that I ask for in this time is awareness of the hardships autistic families go through in the meagre task of existing, of living at home. As invisible as we may be in everyday life, we are here, sacrificing normality in the name of love. Don’t forget about us.
Katrina xo

Stephen and I with his beloved Teletubbies. lol
Taken from “KATRINA MC Blog – Lipstick and Politics In which I document my views on makeup and why democracy doesn’t exist. Sometimes.”
*The first somewhat mainstream representation of the broader spectrum of autism that I have ever come across is Louis Theroux’s Extreme Love: Autismwhich shows children attempting to navigate their way through a mainstream school, verbal children on the cusp of being integrated into “normal” life, all the way to children who are barely or non-verbal and have serious self-harm issues. For those willing to delve into the world of autism, it’s a good start. It is available to stream on Netflix.

Whistleblower nurse who lifted lid on autism abuse scandal reveals how she felt powerless for 12 years – until she saw one victim being so violently restrained by NHS staff they broke his NECK. Article by Ian Birrell

0 Comments | This entry was posted on Jan 16 2019
  • A senior mental health team leader said she was asked to assist a cover up after staff restrained a patient with learning disabilities so forcibly he was paralyzed
  • The hideous story revealed by Elaine took place in an NHS psychiatric unit in the South of England six years ago
  • This newspaper has spoken to more than two dozen distraught families whose children have been stuck inside unsuitable secure units

The man was only taken to hospital two days later, after doctors intervened, and was found to be paralysed.

The senior team leader, who does not wish to be identified but I will call Elaine, says she was then asked to assist a cover-up at the NHS hospital but refused and quit her job instead.

‘I had to leave because this incident and the aftermath went against everything I believe in,’ she told The Mail on Sunday. ‘These places are horrific, they are barbaric – we have created a system that is simply geared to abuse.’

Four Hospital workers Struggling with a patient. A mental health nurse has revealed she saw staff in a secure psychiatric unit restrain a patient with learning disabilities so violently that they broke his neck

Four Hospital workers Struggling with a patient. A mental health nurse has revealed she saw staff in a secure psychiatric unit restrain a patient with learning disabilities so violently that they broke his neck

The whistleblowing nurse, an expert in restraint techniques, stepped forward following our campaign to stop the routine locking up of teenagers and young adults with autism and learning disabilities. Last week, two other nurses and a senior carer blew the lid on what they called ‘shameful institutionalised abuse’ taking place behind the locked doors of a different institution, Meadow Lodge, a privately run unit in Devon funded by the NHS.

Ian Summers said he saw patients more often violently held down, attempt suicide and forcibly drugged while working in the unit holding vulnerable teenage girls than when he looked after killers and psychopaths at Broadmoor high-security hospital.

This newspaper has spoken to more than two dozen distraught families – some breaking gagging orders – who have told how their children have been taken from them for years and stuck inside unsuitable secure units that only lead to mental deterioration.

Much of their anger has been focused on private firms charging up to £730,000 a year for each patient – but the hideous story revealed by Elaine took place in an NHS psychiatric unit in the South of England six years ago.

The victim was a 36-year-old man with mild learning disabilities. ‘He was lovely if treated the right way,’ said Elaine, who is in her late 30s. ‘But there were four members of staff who did not like him, so they wound him up and he became abusive in response.’

She said the carers held him down before dumping him in a tiny seclusion cell. ‘Normally he would pace up and down in there but he lay on the floor in his own faeces and urine. They said he was putting it on and left him there for two days.

The hideous story revealed by Elaine took place in an NHS psychiatric unit in the South of England six years ago (file image) 

The hideous story revealed by Elaine took place in an NHS psychiatric unit in the South of England six years ago (file image)

‘Only when the consultant came in was he sent to hospital, where they found his top two vertebrae were broken. He was in agony.’

The man was left paralysed for two years, eventually recovering some ability to walk with sticks after intensive therapy at another hospital. Elaine claimed she was then asked to cover up the incident by colleagues. ‘I was supposed to say it was an accident and there had been proper restraint methods used. I refused, so they made it impossible for me to work and I quit.’

She was relieved to leave a system she had joined full of idealism, inspired by an autistic godson and a relative who killed himself, but came to hate over 12 years working in secure units and ‘short-stay’ assessment and treatment units (ATUs).

The nurse said there was frequent abuse and bullying of patients – one man with Down’s syndrome who loved drawing would have his crayons hidden by staff to infuriate him – and regular over-medication to sedate people. ‘There is this view that staff are normal people and patients are not, which leads to institutional abuse across these ATUs and secure units.

‘It is difficult not to get sucked in and become part of the system. I have worked in more than ten of these places and I wouldn’t put my dog in one. They should be bombed.

‘Everything is locked, there is lots of seclusion and restraint when six adults push someone on the floor. It’s horrible.’

The use of restraint in ATUs has soared in recent years, rising from 15,065 incidents in 2016 to 22,620 in 2017. There is also growing concern over use of long stretches in solitary confinement, with patients held in padded cells under permanent observation. ‘If someone shows signs of challenging behaviour they are secluded, which is awful,’ said Elaine. ‘Imagine being placed in a room 6ft by 6ft with a plastic mattress and no access to a toilet unless a full restraint team accompanies you.

‘You are fed through a hatch, spoken to through a hatch. How does this help anyone?’

What is autism? By The National Autistic Society

Families have complained that this kind of incarceration is ‘a spiral of cruelty’ since innocent people are shut in conditions that only serve to intensify their anxieties and stresses, which then makes it harder for them to win freedom.

Yet this latest whistleblower, who now works to free patients, said families do not have a clue what really goes on behind locked doors.

‘I tell parents they should never seek help from the system because they will lose control of their child,’ Elaine said. ‘Ask for help and you risk losing your child.’

This is a terrifying indictment of our public services. Yet it is one I have heard echoed by despairing families, such as one distraught man who asked for three days’ respite help only to have his autistic son locked away for three years so far.

Elaine believes a broken system is being fuelled by big profits, with private groups expanding operations despite Government pledges to move people with autism and learning disabilities back into supported living in the community.

There are 2,375 people with autism and learning disabilities held in assessment and treatment units at a cost of about half a billion pounds a year, with the number of children more than doubling over the past three years, and scores more are held in other secure units. One man is thought to have cost taxpayers £10 million after being held against his family’s wishes for 18 years.

More than half the patients in ATUs have been detained for at least two years, and almost one in six for more than a decade. ‘It is all about money,’ said Elaine. ‘Why else do they keep people in these conditions, costing maybe £7,000 a week, when other mental health services are struggling and community facilities crumbling?’

Elaine, who has helped extricate 13 people over the past five years working as a care partner with local authorities, added: ‘I once thought I could save every autistic person in the United Kingdom – but sadly I am only able to help a handful.’

We trigger 4th autism inquiry  

A major investigation into the abusive care of patients with autism is set to be launched by MPs – the fourth since The Mail on Sunday revealed how hundreds of teenagers and young adults are being locked up, forcibly drugged and violently restrained.

It is understood the Health and Social Care Select Committee, chaired by Conservative MP and former GP Sarah Wollaston, will examine the scandal and the floundering care system that leads to routine abuse and detention.

Westminster sources confirmed they were deciding on the scope of the investigation, which is likely to begin in the spring.

‘We are very keen to look hard at these issues,’ said one key figure.

Health Secretary Matt Hancock has already told the health watchdog the Care Quality Commission (CQC) to investigate after admitting that he was ‘deeply shocked’ by this newspaper’s revelations that children as young as 13 were being incarcerated in secretive secure units.

Distraught families have told how relatives with autism and learning disabilities are locked in solitary cells, fed through hatches like animals, and forcibly injected with drugs to sedate them.

One man has been held for 18 years, and 40 autistic patients have died in assessment and treatment units since 2015, often in abysmal conditions.

But a group of cross-party MPs last week accused Mr Hancock of ‘backtracking’ over such ‘inhumane detention’ in the Government’s new ten-year plan for the NHS.

The plan only commits the NHS to reducing the number of people with autism and learning disabilities in hospital units to less than half the 2015 levels by 2024, despite previous pledges to end such detention.

The MPs – including former Liberal Democrat Minister Norman Lamb, Labour’s Shadow Minister for Mental Health and Social Care Barbara Keeley, and Tories Johnny Mercer and Charles Walker – accused Mr Hancock of abandoning a target to cut numbers held by up to half by March this year.

The Health and Social Care Select Committee, chaired by Conservative MP and former GP Sarah Wollaston, will examine the scandal and the floundering care system that leads to routine abuse and detention of people with autism 

The Health and Social Care Select Committee, chaired by Conservative MP and former GP Sarah Wollaston, will examine the scandal and the floundering care system that leads to routine abuse and detention of people with autism

‘Those held in institutions, who could live independent lives with support, have their human rights breached in an unacceptable way,’ the MPs said in a letter to the Health Secretary. ‘We know the use of force is endemic in many institutions, which is a further assault on their human rights. There is also grave concern over use of medication on patients.’

Mr Lamb, who organised the letter, said he was horrified that the Government was effectively encouraging the NHS to ‘take its foot off the pedal’ to end abuse.

Mr Walker, who has admitted to his own mental health issues, called on the Government to act quickly. ‘This has been overlooked for too long and we can’t let this suffering continue,’ he said.

Harriet Harman, chairman of the Joint Committee on Human Rights, which has already started its own investigation, has also written to Mr Hancock over ‘perverse incentives’ that lead to detention in ‘inappropriate’ institutions.

She demanded to know if private providers had a ‘vested interest’ in keeping autistic patients locked up, which can cost taxpayers £730,000 per person a year.

Ms Harman also asked if divisions between the NHS and local authorities stopped patients being freed. ‘This is not a good use of public money given that community care is often less expensive than inpatient care,’ she said. Her letter followed questioning by the committee last week of three senior NHS and CQC officials. ‘They just spouted gobbledegook and theory,’ said one infuriated MP.

The Mail on Sunday has also discovered that a report commissioned by the Department of Health and Social Care before the Winterbourne View scandal in 2011 – which revealed abuse in a privately run Gloucestershire care home – warned that the model of private provision, funded on debt, would frustrate efforts to free those being confined.

After the Government refused to publish the findings, it was released by a think-tank.

Rob Greig, former national director for learning disabilities, who co-wrote the report, said: ‘I was very disappointed that they [the Government] showed little interest in what we were saying.’

Over the past decade, the proportion of people with autism and learning disabilities in privately-run beds has soared from one-fifth to more than half as new players muscled in and opened secure units despite Government pledges to close them.

Children’s Commissioner Anne Longfield is also investigating the scandal.

MANCHESTER EVE NEWS ‘An inquest heard that former sea cadet Jane Kavanagh, 33, killed herself the next day after struggling to get support from council and healthcare officials.

0 Comments | This entry was posted on Oct 30 2018

A single mother who killed herself after struggling to care for her disabled daughter called her GP to say she was suicidal – and was offered an appointment 12 days later.

An inquest heard that former sea cadet Jane Kavanagh, 33, killed herself the next day after struggling to get support from council and healthcare officials.

She had been a full-time carer to her 15-year-old daughter, who was autistic and suffered from the degenerative condition cerebral ataxia.

Her parents did offer support, but their house was deemed ‘inadequate’ by council officials in Rochdale – so Miss Kavanagh and the children had to move to a messy nicotine-stained property described by family members as ‘appalling’.

In a suicide note to her parents, Alan and Irene Farrar, Miss Kavanagh, who lived on her own with her two children, wrote: “I just can’t find a way to drag myself out of this f.cking sh.thole of a life, I hate myself. I want to die all the time, I have for a few months now, every day.”

She was later found by neighbours hanged at her home in Rochdale having earlier left the children with Mr and Mrs Farrar.

 Miss Kavanagh killed herself on Saturday, April 21, this year. It emerged during the inquest that on the Friday she had called her local GP surgery and explained that she had suicidal thoughts – she was offered an appointment for 12 days later.

Tests showed she had been surfing the internet for ways to take her own life.

At the Heywood hearing Mrs Farrar wept as she said: “Jane was 19 when her first child was born and she had some difficulty with getting assistance from the authorities and she became her full time carer.

“Her eldest was diagnosed with autism but it took a few years for the authorities to accept that. She then started having trouble with her leg, which got worse and worse, and she was diagnosed with cerebellum ataxia in 2015 – she was just 12 and had lots of hospital appointments in Manchester and one in London.

Jane Kavanagh

”We helped when we could and they all used to live at our house, but they conducted a review and moved them out to a bungalow and her daughter moved to a specialist school.

“Jane wasn’t getting assistance at weekends or evenings. She was offered no respite. Her other daughter had some assistance from her dad.

“She wanted help for in the mornings, getting them washed and dressed and ready for school. She was looking after two children essentially on her own and she struggled. At first she was staying with us and her two children and there were no adaptions to the house or anything.

”She then went to a rented bungalow, but there wasn’t enough room for them all, so she was told to go to this new address as they said there was nothing else available. It was a mess, the walls were covered in nicotine, it was in an appalling state. She had to paint it and clean it herself.

“There was nothing there for her daughter, no adaptations to the bathroom, the bedrooms were upstairs, there wasn’t even a grab rail for the stairs. She had to shuffle on her bum to get upstairs. She spent the last 15 months in that property.

”She lost a lot of weight and she sometimes rang up distressed and said she felt she would end up in a psychiatric ward. We were concerned about her drinking, she was drinking a lot. She had financial issues too.

“On April 21st we had her daughter stay over on the Friday night, Jane then came over the Saturday morning to pick her up. She got her about lunch time and then came back at teatime. She told us she had eaten, so she had something. She seemed to be in a happy mood.

Jane Kavanagh

“Jane then asked to go to her friends and promised she would be back for 8pm. She didn’t come back. We expected her to stay over. Her daughter rang her, but her phone was off.

”Now we now have the same problems Jane had. Her daughter can wheel herself around but she needs constant care 24/7.”

Mr Farrar said: “We were absolutely devastated. We knew she had financial difficulties but no idea how bad. I went to the bank the day after she died and found that she had been transferring money to different people over the previous six months.”

Miss Kavanagh’s GP Dr Ayman Ramadan said: “In March 2018 she was talking about feeling depressed and her mother came with her. Although she seemed well, she was low in mood and was encouraged to self refer herself to ‘Healthy Minds’ so she could help herself.

Watch: The Samaritans – talk to us…

SAMARITANS: TALK TO US…

”She rang the surgery on April 20 and wanted an appointment. The receptionist used the triage system and made the appointment for May 2nd. At the time there were no red flags with how she was behaving.”

Recording a conclusion of suicide Coroner Nicholas Flanagan said: “Jane struggled to obtain support and assistance in her care of her eldest daughter. She had significant help from her parents who lived close by and they provided a lot of assistance.

“They initially moved into a bungalow but they did not have the sufficient space as Jane did not have a bedroom. She was supplied with a property, which was not adequate.

“There was no mechanisms for her daughter to go downstairs, get into the bathroom or go to her bedroom. Nothing was adapted. The property was not in a good state of repair. They found it difficult to live in there.

Jane Kavanagh

“This affected Jane’s ability to care for her children and the cause of her stress was down to the care of her daughter. In December 2016 she presented to have gone through a mental health crisis and she was prescribed medication to alleviate the depression.

“There is no evidence her medication was regulated or reviewed. She was advised to self refer herself to the appropriate services. On April 20th, Jane rang the GP again and she said she felt suicidal. She requested an appointment and was provided the next available date on May 2nd, some 12 days later. There was no evidence a GP or clinician considered Jane’s case following the phone call.

“There is no evidence other organisations were being called in or were called by way of explanation for how Jane was feeling. I find Jane suffered from depressive conduct due to her being the primary carer.

 

THE ROYAL PARKS HALF MARATHON 2018 LONDON IS DONE…THANKS TO ALL OF YOU WHO SUPPORTED ME FROM THE BOTTOM OF MY HEART.

0 Comments | This entry was posted on Oct 15 2018

I really struggled yesterday for various reasons but I did it!  Here are some photos of me dancing wildly with my medal  – very happy in the knowledge that I have raised nearly £5,000!  Every penny of which will go to brave families with autistic children.  Lx 8e5af00b-f183-42e0-b42f-a5284c7e57a1 happy in the knowledge that I raised nearly £5,000 for all of the brave families with autistic children Lx Read more »

ROYAL PARKS HALF IS THIS WEEKEND -click on link for latest news on Lucinda and new photos!

0 Comments | This entry was posted on Oct 09 2018

Fred’s mum training in wild Co. Donegal for The Royal Parks Half https://uk.virginmoneygiving.com/fredfoundation…last big run before the big day. 2hrs 20. Done

0 Comments | This entry was posted on Oct 03 2018

PHOTO-2018-10-03-10-22-50PHOTO-2018-10-03-10-22-52PHOTO-2018-10-03-10-22-51PHOTO-2018-10-03-10-22-51 (1)PHOTO-2018-10-03-10-22-51

‘I WAS A CHILD CARER’ – When you are a carer, it can be hard to relate to your friends, with their “normal” lives. You have responsibilities. You have to grow up very quickly. “You can’t muck about and be so carefree.

0 Comments | This entry was posted on Jul 29 2018

‘I was a child carer – it made me who I am today’

Rhiannon Lucy Cosslett and her brother

From the age of 12, writer Rhiannon Lucy Cosslett helped look after her severely autistic brother. Like hundreds of thousands of other young carers, she took on major responsibilities early – but says it made her the person she is today.

Being a young carer makes you different from your friends. This is one of the first things that you learn. You visit their houses after school and notice how different their lives are from yours. Their houses seem tidy, quiet and peaceful.

Mine was the opposite.

My younger brother is severely autistic. He was diagnosed when he was four, but we knew there were issues before then.

Even as a baby, he wouldn’t stay still when you tried to hold him – my mum, Anna, said he was like an octopus wriggling in her arms.

As a toddler, he was hyperactive. He tore through our house, leaving chaos in his wake. He would climb furniture and banisters, empty cereal packets and cartons of orange juice on the floor, scribble on the walls.

Rhiannon Lucy Cosslett's brother

He didn’t sleep. He didn’t talk. We knew our lives would be changed by his autism, but we didn’t realise by how much.

I am six years older than my brother, and cared for him along with my mum until I left home in North Wales at 18 (my parents separated when I was 12).

It’s been estimated that 700,000 children and young people across the UK, some as young as five years old, are caring for family members. But the true number is likely to be much higher, as many are hidden from view.

I know what an isolating and difficult experience it can be – growing up, I had no idea there were so many other children out there in similar positions, caring for ill and disabled relatives.

When you are a carer, it can be hard to relate to your friends, with their “normal” lives.

You have responsibilities. You have to grow up very quickly. You can’t muck about and be so carefree.

Rhiannon Lucy Cosslett and her brother

I certainly didn’t misbehave – I felt that my mum, who did the lion’s share of the caring, had enough to deal with, without me being naughty as well. My brother barely slept and she was exhausted most of the time from getting up more than four times a night. I would care for him while she snatched an hour of sleep and, as I got older, for much longer stretches so that she could go to work or spend the evening with her then partner.

I did have moments where I felt quite separate from my classmates, who were still having their dinner cooked for them when I was preparing meals from scratch. On the other hand, being able to cook stood me in good stead in the long run, as did many other skills and traits I learned from being a carer – responsibility, compassion, empathy, selflessness, multi-tasking, patience and generosity.

A sense of humour was a must, especially when it came to toilet trouble. Mum and I cleared up enough poo for a lifetime (this may be why, at 31, I am still not sure how I feel about having children).

It taught me basic plumbing – give me some string and a coat-hanger and I can fix a broken toilet – but also how to laugh when you’re up the proverbial creek. You had to, because otherwise you would cry. Then again, we did lots of that too.

We had two floods and a fire, and endless weird and embarrassing moments. People loved my brother – he was a very cute child with a huge goofy smile and big blue eyes, but his behaviour was – how can I put it? – unpredictable.

Rhiannon Lucy Cosslett's brother

Sometimes when we were out and about he would take his clothes off and run around while we chased after him, waving his trousers desperately like a flag. He was always falling into lakes and rivers, or reaching into people’s bags of chips and plucking them out.

He had no sense of fear so you had to be hyper-alert. He once ran into a field with a bull, which was terrifying. Thankfully we got him out in time.

He also had tantrums in public and people would stare and make comments. I always confronted them when this happened – being a young carer made me quite feisty. I had a keen sense of injustice from a young age and that has translated into my journalism, particularly when it comes to the hardship and discrimination that disabled people often face.

Schoolwork was difficult as sleep was disrupted, and the house was really noisy all the time.

I learned how to concentrate even if all around me was total chaos. I developed a love of reading and tore through several library books a week. In a way, being a carer is what made me a writer. When things were difficult, I needed a way to escape, and reading provided that, but it also made me interested in people.

Rhiannon Lucy Cosslett and her brother

You learn so much about humanity when you are looking after someone vulnerable and you need empathy, a vital skill when it comes to creating your own characters.

Teachers didn’t always understand. I’m not surprised that Carers Trust Wales have found that many children who are carers are not known to local authorities. Adults often don’t think to ask, or when you try to explain why your homework is late, or indeed why you are, they will just say that you are making excuses. I’ll never forget the horrible reaction of an after-school drama teacher who refused to accept that I had missed a rehearsal because I had to look after my brother.

Nevertheless, for every nasty person there were many more kind ones.

I had a couple of close friends who lived nearby – Hannah and Kate – who have always been there, and would keep me company when I was on my own with my brother at home because mum had to work or pick up a prescription. (Hannah is now a mental health nurse and says her experience looking after my brother helped inspire her to pursue that career.)

As I grew older, I opened up to more friends about my home situation. They were all really supportive, treating my situation as though it were no different from anyone else’s. Sometimes people act as though they are uncomfortable around my brother because of his strange seeming mannerisms and noises, but they never did. They helped me realise that there is no such thing as a normal family.

My mum trusted me, and in many ways that worked out quite well – as long as I made sure my brother was OK, I could have people over and she could benefit from finally having a bit of a social life. Often friends would help put him to bed, and I remember being particularly touched to find my friend Sam reading him a bedtime story.

Rhiannon Lucy Cosslett's brother

Leaving home was hard. By that time, my brother was in a special school, staying overnight during the week and coming home at the weekends. Yet I still felt like I was abandoning my mum, who was finding it increasingly difficult to cope.

My brother had grown very big and strong and she couldn’t control him any more. He had also developed epilepsy, which needed careful management and supervision, and his obsessive-compulsive disorder meant that taking him outside was more and more difficult. She became very isolated.

I missed them both terribly, because although things had been hard at times, we were a family.

I cried for two weeks, and I think the sadness and the exhaustion are with me even now.

Although I have a good job and a happy life, there are some days where I still feel very low.

When my brother was nearly 15, things became so difficult for my mum that he went into school full-time. He is now 25 and lives in a care home. He is very happy there – his carers are brilliant, and I see him as much as I can for walks on the beach and trips out for lunch.

Rhiannon Lucy Cosslett and her brother

I am grateful for how lucky we are – not everyone receives such good government support. If the help hadn’t been there, I might never have left home. I certainly wouldn’t have gone to university or have established a career as a writer.

Whenever I meet young carers, I want to give them a hug and tell them that I know what they are going through.

They should be given more support – both practical and respite care. I certainly would have benefited from some counselling.

No child’s education should suffer because they are looking after a family member, they should be encouraged by adults, and given the help they need.

Sometimes I am asked if I wish my brother had been “normal”. It’s a strange question, because it’s essentially asking me if I wish he were a different person.

Rhiannon Lucy Cosslett's brother

Obviously, I wish that he did not have to suffer, which he does as a result of his epilepsy and anxiety. But I love my brother for who he is, and looking after him has been the defining experience of my life.

Caring has made me strong as well as sensitive. It has made me a kinder person and given me the motivation to fight for social justice. But most of all I feel lucky to have felt such profound, unconditional love for my little brother. That has been a gift.

HIDDEN LIVES – HAPPY FATHER’S DAY!

0 Comments | This entry was posted on Jun 17 2018

Anyone can be a father but to be a Dad to a severely autistic young person is quite something else.  So, to all the unsung heroes who care for autistic loved ones and especially to the Dads who care for profoundly autistic young people and never have a day off from worry or strain. HAPPY FATHER’S DAY.  We see you.

The Hidden Lives of Siblings of Children with Disabilities’ – ‘WHAT ABOUT ME?’ By Avidan Milevsky Ph.D

0 Comments | This entry was posted on May 14 2018

“What about me?” Enhancing the Lives of Siblings of Children with Disabilities by Avidan Milevsky Ph.D

There is one member of the overall family system who has been neglected as part of the effort to attend to disability issues: namely, the siblings of those with disabilities. As I have argued in multiple venues, sibling issues in general is an area that has been neglected in research, application, and the law despite the fact that siblings play an integral role in the lives of people throughout life. This neglect of sibling issues is even starker when examining the attention given to siblings in overall disability services.

To begin shedding some light on this problem, allow me to present several common issues faced by siblings of children with disabilities:

SIBLINGS MAY DEVELOP MULTIPLE DIFFICULTIES

Siblings of children with disabilities are at a greater risk than average of developing emotional issues, anxiety, and stress. These problems are known as internalizing issues, not obviously visible, and may be an attempt by these siblings to hide their problems; they may want to be well-behaved or protect their already overburdened parents. Other issues that these siblings may face are peer problems, as well as a lack of engagement in extracurricular activities and academic issues as a result of limited time and money.

SIBLINGS BECOME OVERLY RESPONSIBLE AND INDEPENDENT

Considering the attention given to the child with the disability, siblings may neglect their own issues. In some cases, siblings experience parentification where they are expected to have many responsibilities for themselves and their sibling, developing duties similar to those of a parent and overlooking their need to act like children. This responsibility may seem positive to parents but may actually be precursors to emotional distress.

SIBLINGS MAY FEEL NEGLECTED BY PARENTS

The family focus on the child with the disability may take away from the attention desired by the sibling. Time spent on medical and therapyappointments for the child with the disability limits the amount of time parents can spend with the other siblings resulting in their feeling neglected. Furthermore, parents may spend a great deal of emotional energy on the child with the disability leaving little emotional energy to support the sibling.

SIBLINGS FEEL IN THE DARK FROM PARENTS AND SERVICE PROVIDERS

Siblings may have similar questions about the sibling with the disability as do parents but have little information or resources available to them. During doctor visits, they are often left in the waiting room. Parents may want to keep well siblings away from the treatment environment or may want to protect the privacy of the sibling with the disability leaving the well sibling feeling in the dark about what is going on with their sibling. They may have many unanswered questions about their sibling including whether their disability can be transmitted and what will be in the future. With little or no information, siblings may develop their own ideas about what is happening, often much worse than is actually true.

SIBLINGS EXPERIENCE MIXED EMOTIONS

Sibling may experience a range of emotions about their situation. They may feel guilt wondering if they caused the disability of their sibling or they may feel guilt about why the disability did not happen to them. They may feel fear about the health of their sibling or about what may happen to their sibling in the future. Siblings may also experience resentment, anger, or jealousy towards their sibling considering the attention and resources expensed on their sibling. An additional common feeling is embarrassmentas a result of the behaviors and appearance of their sibling. In some cases the embarrassment may be so great that they disassociate from the sibling with the disability. They may claim to be an only child or may not invite over friends so that they do not have to answer questions about their sibling.

SITUATION PROVIDES OPPORTUNITIES FOR SIBLINGS

Beyond what is known as the pathogenic perspective, which highlights the difficulties associated with having a sibling with a disability, this difficult circumstance may also offer some opportunities for siblings. These siblings often develop certain positive characteristics such as self-controlcooperationempathy, tolerance, altruism, maturity, and responsibility as a result of dealing with their family situation. They may develop loyalty and a protective attitude towards their sibling. In some cases these siblings use someone’s attitude about special needs as a test for screening friends and mates. Their involvement with their sibling may even lead them to choose future occupations in the helping professions.

I see first hand at my university the great strides that have been accomplished in offering an environment that offers everyone a chance to succeed regardless of limitations. I am inspired by the great work of our university’s office of disability services in caring for the needs of all students. This great work is being replicated in many industries and institutions across the country. Focusing on some of the unique issues faced by siblings of individuals with disabilities is an important step in the continuous work that is being done in disability services overall. I hope to highlight this focus in future columns about variations in how siblings experience the above outcomes and some recommendations that can be used by families and service providers in helping these brave and burdened siblings.

https://www.psychologytoday.com/blog/band-brothers-and-sisters/201406/siblings-children-disabilities?eml

Avidan Milevsky, Ph.D., is an associate professor of psychology at Kutztown University of Pennsylvania.

On ‘NATIONAL SIBLINGS DAY’ WE JUST HAD TO SHARE – A SISTER WRITES….the truth is powerful

0 Comments | This entry was posted on Apr 17 2018

The Forgotten End of Autism

I spent last night in my room in peace. I went to bed around 11, watching a TV show and enjoying the silence of my house. My brother wasn’t home for the first time in a while, and we were able to relax for a few hours. The night before, I went to bed at 11, frustrated as I’d just had an argument with my mum. We were both exhausted as, for the fifth time that day, we’d dealt with my 17-year-old brother having a meltdown over – I kid you not – the Teletubbies.
There is no physical way to explain to someone who hasn’t experienced autism what the emotional labour is like on a family. It challenges one beyond what they think they can cope with, because it forces us to take a look at life’s fundamental question: what is the point?
The issue I broach is one that is rarely expressed in mainstream media and politics – that autism is not and never has been one uniform block of distinction. The actuality is this: autistic people are no more alike than neurotypical people; the condition is an intricate web of varying aptitudes, inabilities and struggles. There will never be an ‘accurate’ depiction of autism because it is not possible to instill the qualities of every autistic person into a single caricature, and that is widely acknowledged across the autism community.
Even so, there is a ‘general’ notion of an individual with autism. Lacking social skills, including eye contact and perception of emotion and tone. Sensory overload, instances of stimming. Whether we mean to or not, when we hear the word ‘autism’, we construct an image of what we assume the person mentioned will be like. We do not think of the ignored edge of the autistic spectrum.
The forgotten side of the spectrum falls to the “low-functioning” children; the ones who cannot feed themselves without making a mess, or perhaps not at all. The incontinent teenagers, the barely verbal adults. Those whose ‘mental age’ is much less than their physical. People like my brother, Stephen, who seem to exist only in their immediate family circle.
For us, it is simple yet heartbreaking. Stephen will never be able to live independently. He requires constant supervision, can’t talk beyond basic requests, can’t use the toilet or dress himself; he can’t so much as cross the road by himself. He doesn’t grasp the notions of money and spending, or even of life in general. His autism is so severe that his world revolves around a rigorous routine of school and home. He thinks in numbers and colours and children’s TV shows. In brutal honesty, I don’t believe he knows what day it is. ‘Mainstream’ is a word that hasn’t left our lips in years.
First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don’t see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.
Secondly, there is no general understanding of severe autism sought. I mean, who can I tell? Family rarely if ever come to visit him, be it for reasons of ignorance or genuine lack of awareness. There is only so much empathy my employers can show me when they have never met him. I worry that friends won’t comprehend, or that they won’t want to know him. I positively panic that potential boyfriends will be put off by him, or reject the idea that he has to come first in my life. The media show nobody like him; journalists don’t bother to highlight our situation. Politicians have never asked what we might need. We are completely and utterly alone at our side of the spectrum, in the dark and in the cold.
I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I’m going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?
And you know what? I love him so much. I love him more than anything in this world, because if anything he is pure. He doesn’t know anything of sickness and pain; he has no awareness of hatred. All he knows is his little bubble of love and care that we provide for him, and in some ways I envy him. He makes me laugh with his wittiness and smarts, and he has kept me going through some rough times. He is a positive influence on my life, and I am not taking away from what he is or has done for me.
But the reality is this: we are tired, and we are alone. Families on the severe end of the spectrum feel they cannot write into support groups, because often their experiences feel too extreme. It is impossible to ever establish a sense of normality, or to lull ourselves into the illusion that things will get better. Our children and family members are not just struggling socially, but struggling merely to exist, to function. With no consciousness among the general public of how hard it truly is, there is no relief from this feeling. We simply have to get on with it. We must continue to take care and love a person who will never comprehend what we have done for him, how much we have sacrificed for him, and will never thank us for it.
Understand this also: if you are part of a neurotypical family, you take much for granted that we will never experience. Family dinners out don’t exist. Holidays could never happen. Stephen will never attend a school disco, bring friends over for dinner, or bring home a partner. I will never get to ask him, “do you want kids?” There will be no wedding for me to attend. Never will he have the satisfaction of a job, a home, a sense of fulfilment in this world.
This is what makes my heart ache the most: my brother simply doesn’t understand his own existence.
This is why, when asked the loaded and complicated question of, “would you take away Stephen’s autism if you could?”, my answer is yes. He doesn’t understand his actions, or the consequences of them – the hurt and exhaustion, but also the happiness and love, that he brings on our family. He makes no decisions about himself or his future, and has no comprehension of any normal, everyday concepts that we grasp so simply. We all want the best for our children; all Stephen wants is a box of Teletubbies and a can of Diet Coke.
We don’t have the luxury of forgetting about it. You probably don’t see these children often – families find it hard to take them out in public, as it is much too stressful and we are judged immensely. These children don’t attend your children’s schools; they simply pass you in traffic on a bus, so you don’t have to experience their presence. You have the luxury of avoiding “low-functioning” children altogether.  In a 24 hour, 7-week job, we do not.
The reality is that it cannot be taken away. Whatever becomes of us, we will continue caring for Stephen far into the future. All that I ask for in this time is awareness of the hardships autistic families go through in the meagre task of existing, of living at home. As invisible as we may be in everyday life, we are here, sacrificing normality in the name of love. Don’t forget about us.
Katrina xo

Stephen and I with his beloved Teletubbies. lol
Taken from “KATRINA MC Blog – Lipstick and Politics In which I document my views on makeup and why democracy doesn’t exist. Sometimes.”
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*The first somewhat mainstream representation of the broader spectrum of autism that I have ever come across is Louis Theroux’s Extreme Love: Autismwhich shows children attempting to navigate their way through a mainstream school, verbal children on the cusp of being integrated into “normal” life, all the way to children who are barely or non-verbal and have serious self-harm issues. For those willing to delve into the world of autism, it’s a good start. It is available to stream on Netflix.