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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.”
____________

*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.

FAMILIES sidelined by law on over 18s with learning disabilities…The Sunday Times 18.02.18

0 Comments | This entry was posted on Feb 18 2018

To think that as a parent,  you have given much of  your life over to  caring for a profoundly autistic child with no mental capacity, then, when they reach 18, the authorities don’t have to include you in any decision about them is pretty galling.  Sometimes the only way you can be included is to  fight for something called ‘Deputyship’ or go for a Judicial Review – not many can afford that and why should they…..’

Article from The Times below:

‘Parents of children with autism and other learning disabilities want to use a test case to challenge a law that sidelines families when a child turns 18.

Rosa Monckton, whose daughter, Domenica, 23, has Down’s syndrome, said that although the children might technically be young adults, they lack the mental capacity to make key decisions.

Monckton said she had heard from “hundreds” of distraught families who had been ignored as officials made “terrible decisions” for their children.

Under the Mental Capacity Act 2005, parents who want to be the decision maker for a young adult must ask the Court of Protection for “deputyship” — awarded only in very difficult cases.

Families sidelined by law on over-18s with learning disabilities

https://www.thetimes.co.uk/article/families-sidelined-by-law-on-over-18s-with-learning-disabilities-hdht5l2wk

ROCKET ARTISTS PRESENT ‘ART BY (the amazing) JOHNNY EXHIBITION’ April 2nd-29th – please click on link for all info and press release……

0 Comments | This entry was posted on Jan 17 2018

PRESS RELEASE Rocket Artists present Art By Johnny[2]

Johnny has a book of his art coming out 2nd April. Art By Johnny

 

Angela and Henry Normal’s book about Johnny ‘A Normal Family’ comes out 20th March.

 

Henry Normal’s  third BBC Radio 4 show ‘A normal love’ was recorded recently and goes out 13th and 14th feb (Valentine’s Day).

The Fred Foundation Accounts 2016

0 Comments | This entry was posted on Oct 19 2017

Fred’s Dad’s office is raising money again – they never forget about The Fred and we are so grateful xx

0 Comments | This entry was posted on Jul 05 2017

https://www.justgiving.com/fundraising/turnmillsummerfest

turmill

Book Early – its going to be good ….www.justgiving.com/henrynormalfred

0 Comments | This entry was posted on Sep 28 2016

www.justgiving.com/henrynormalfred Fred Foundation Henry Normal Poster[1] (dragged)

Accounts for Year to 31.12.2015

0 Comments | This entry was posted on Sep 19 2016

HOW TO BOOK YOUR PLACE(S) FOR Henry Normal BENEFIT FOR THE FRED

0 Comments | This entry was posted on Sep 17 2016

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

Henry Normal, co-writer of The Royle Family and other comedy hits, beautifully folds in the pathos as he talks about his son who has ‘mildly severe’ autism
THEGUARDIAN.COM|BY HANNAH VERDIER

Parents Of Children With Autism Face ‘Exhausting Battles’ To Get Educational Support ‘This is putting an unnecessary strain on often already vulnerable families.’

0 Comments | This entry was posted on Sep 03 2016

02/09/2016 15:20 | Updated 22 hours ago

Many parents of children with autism are facing “exhausting battles” to get the right education and support, according to a new charity report.

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.”

JGI/TOM GRILL VIA GETTY IMAGES

“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.”

ABLEIMAGES VIA GETTY IMAGES

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.

NAS
Jody and her sons Cameron and Harry.

“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.

This Is Autism

Thanks

0 Comments | This entry was posted on Jul 05 2016

We have recently given out a number of  grants to families.The money all came from the donations you made towards Lucinda running the Marathon. Here is a thank you we have already received.

Thank you so much for our recent grant. This money has helped us secure a place on the R. S. workshop being run by my ABA therapist in November. It has also covered the last 2 sessions and the remainder is going towards an intensive Summer ABA
Programme to get Rob out of nappies before school and expand on his talking as he has started using vocal communication. I am over the moon with his progress.  Thank you.