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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.

Renuke & friends at Spark Foundry UK supporting The Fred yet again! www.justgiving.com/fundraising/london2parisforfred

0 Comments | This entry was posted on May 21 2018

THANK YOU ALL SO MUCH FROM THE FRED!

https://www.justgiving.com/fundraising/london2parisforfred

Just in case anyone knows anyone or is interested…please share

0 Comments | This entry was posted on May 20 2018

We are working with to appoint a Corporate Fundraising Manager. If you have an ambitious, innovative and proactive approach to fundraising, and a passion for this cause, we would love to hear from 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.”
____________

*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.

Mothers of Children on the Autism Spectrum Experience High Levels of Fatigue and Mental Distress ……

0 Comments | This entry was posted on Mar 13 2018

Mothers of Children on the Autism Spectrum Experience High Levels of Fatigue and Mental Distress

Studies indicate that the demands placed on parents caring for a child with autism contribute to a higher overall incidence of parental stress, depression, and anxiety and adversely affects family functioning and marital relationships compared with parents of children with other intellectual, developmental, or physical disabilities. Mothers of children with ASD, in particular, appear to face unique challenges that potentially have an impact on their health and wellbeing.

Parents of children with an autism spectrum disorder (ASD) are increasingly involved in the provision of early intervention and learning activities to promote positive outcomes for their children. However, several studies have documented that parental stress as well as a lack of time and energy are barriers to providing early intervention activities. Because autism impairs social relatedness and adaptive functioning, parent stress can decrease helpful psychological processes and directly influence the parent or caregiver’s ability to support the child with special needs. Consequently, understanding factors, such as lack of energy or fatigue that may limit the capacity of the parent to assist in promoting their child’s development is critical.

A study published in the journal Autism examined the extent to which parents experience fatigue and its relationship to other aspects of wellbeing and parenting. Fifty mothers of children ages 2-5 years with ASD participated in the study and completed questionnaires assessing level of fatigue, parenting self-efficacy (belief about the ability to parent successfully), children’s behavioral and emotional problems, sleep quality, parent support needs, and overall physical activity. The study found that compared with mothers of typically developing children, mothers of children with ASD reported significantly higher fatigue, with overall scores in the moderate range. Factors associated with high levels of fatigue were poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was also significantly related to other aspects of wellbeing, including stress, anxiety and depression, and lower parenting efficacy and satisfaction.
These findings were somewhat expected given the additional caregiving demands, parenting challenges and pressures of managing family life when raising a child with an ASD. Likewise, It is also probable that symptoms of depression, anxiety, stress and worry (body tension, increased heart rate and rumination) can be mentally taxing and contribute to, or exacerbate fatigue. The researchers also note that it was not surprising that poor sleep quality was associated with higher levels of fatigue given the large amount of research indicating that inadequate sleep and poor sleep quality is associated with a range of physical health and wellbeing difficulties. Parents of children with ASD are at particular risk of sleep disruption and poor sleep quality owing to the high rate of sleep problems in their children. Parents reported that their child waking was the primary reason for sleep disruption. For other parents in the study, stress, anxiety and not being able to wind down were stated reasons for sleep disruption.
Implications
 
What are the implications of this study? The findings clearly indicate the need for interventions to specifically target parental fatigue and its impact on families affected by ASD both in the present and longer term. In addition to interventions targeting child sleep problems, parents are likely to benefit from psycho-education about fatigue and its potential effects on wellbeing, parenting and caregiving. This includes information about strategies to minimize and/or cope with the effects of sleep disruption, increase health and self-care behaviors, and strengthen opportunities for social support. It is well established that social support is protective of optimal parent wellbeing and, therefore, is an important component of any intervention to address fatigue and wellbeing of parents of children with an ASD. Parents with limited assistance to share the daily demands of caregiving and family life are likely to be at greater risk of fatigue than parents with more support. For parents with limited support, there might also be fewer opportunities to engage in self-care behaviors that are likely to alleviate or protect them from fatigue.
From a clinical perspective, professionals working with families of children with an ASD should be aware of negative effects of fatigue in addition to other wellbeing difficulties, such as stress and anxiety. An assessment of the presence and severity of the physical, cognitive and emotional symptoms of fatigue, as well as the perceived impact on daily functioning, mood, relationships, parenting and other aspects of caregiving is important. Lastly, future work in this area should involve the development and evaluation of information resources and intervention approaches to assist parents of children with an ASD to manage fatigue and promote their overall wellbeing. The longer-term benefits for parents in terms of strengthening their overall health, wellbeing and parenting should also be a focus of research.
Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism, 17, 465-480. DOI: 10.1177/1362361311416830

Lee A. Wilkinson, PhD, NCSP is a licensed and nationally certified school psychologist, registered psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. He is also editor of a best-selling text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools and author of the book, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

BIG THANKS TO THE FRED’S FRIENDS – HENRY & ANGELA – your honesty helps us all.

2 Comments | This entry was posted on Mar 10 2018

© Henry Normal and Angela Pell. Extracted from A Normal Family: Everyday Adventures with Our Autistic Son, published by Two Roads on March 22 (£16.99)

https://www.thetimes.co.uk/article/henry-normal-life-with-my-autistic-son-zsf3zwrx7

There’s a Bafta on the sideboard in Henry Normal’s dining room, overlooking the sea in Brighton. Normal was the writer and producer behind some of the best, most groundbreaking comedy on television. The Mrs Merton ShowThe Royle FamilyGavin & Stacey and The Mighty Boosh, to name just a few, were all his programmes.

For 17 years he would commute to London to work at Baby Cow Productions, the company he co-owned with Steve Coogan. He is 61 now, and retired from the high pressure of managing a production company. But he’s still working. A Radio 4 monologue has been adapted into a one-man show about being the father of 19-year-old Johnny, his only child, who is autistic. At the end of every performance, fathers queue up to talk to him about their own autistic child. Often, they’ll cry. Normal might cry, too. Tears come easily, he says. “Sometimes on stage I have to pretend it’s a dramatic pause, but in reality I’m trying not to cry.”

Now he’s written a book with his wife, Angela Pell, a scriptwriter, about life with Johnny. It’s rare to hear from the parents of children at the severe end of the autistic spectrum. Dramatists tend to focus on the high-achieving end of autism. As Normal acknowledges, “Our lives are not dramatic enough to be in a drama; not comical enough to be a comedy.” Johnny, for instance, communicates in very few words; he’s never had what you’d call a conversation.

It’s rare, too, to hear from the fathers of autistic children. The many books about autism are usually written by mothers, something Normal would be the first to agree is as it should be. It was, after all, Pell who was at home with Johnny, especially in the early years when he was slow to talk or walk or play; when he bit and hit because he couldn’t manage; when he seemed unreachable, in his own private hell.

But in A Normal Family, he has given fathers a voice, including the guilt he felt when he buried himself in work. When he first brought Johnny home from hospital, he can remember saying, “You are going to have a brilliant and beautiful life …” The book is about how he grieved for the life Johnny isn’t able to have – and learnt to celebrate the one that he does.

It’s the kind of book they wished they’d had when they first got Johnny’s diagnosis. “You get so many books that are about the big picture,” says Normal. “But you’ve still got Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday to get through. You’re living day to day. I don’t think we knew what a week would look like with Johnny.”

Johnny isn’t expected home until later – he is at a local authority college that focuses on special needs. Yet his presence is felt throughout the house. “If he was imminent we’d be rushing around like meerkats,” says Normal. “We always have to think two moves ahead. Just making sure everything is sorted and Johnny will be OK.” We’re sitting in the living room, which is full of Johnny’s paintings. Next month they are being shown in an art gallery in Brighton.

When Johnny gets home his routine will be the same as it every other college day – a bowl of cornflakes, painting, iPad time, dinner with his parents, bath, stories, bed by 9pm.

Johnny is 19 now, 16st and 6ft-plus. He is unlikely ever to have an argument with them, or have a girlfriend, or leave home.

Normal with Steve Coogan, his partner in the production company Baby Cow
Normal with Steve Coogan, his partner in the production company Baby CowREX SHUTTERSTOCK

Pell says there have been “times in the past when I’ve thought about killing myself and Johnny. I’ve driven along the seafront with him and thought, for a split second, about turning the wheel and heading straight over the cliff.” It’s a taboo thing to admit, and brave, too. She explains: “I feel like I’m his translator. In the early days I worried that one day I wouldn’t be around for Johnny. Nobody knows him as well as I do. Nobody, apart from Henry, loves him as much as I do. Sometimes ending it all felt like the easiest …” Solution? “Yeah.”

Early on they searched for a cure. “Getting ‘rid of’ [it] was, of course, how we felt then,” says Pell. “Not knowing anything really. Not understanding then that Johnny’s autism runs through every cell of him. It’s in his DNA – wanting to banish it is akin to wanting to banish him.” A course for parents with autistic children in America called Son-Rise helped the most – instead of trying to “fix” Johnny, it was Normal and Pell who adapted. The course taught them how to engage with Johnny and play with him as he was, not how they wanted him to be. “They told us, ‘You start from nothing and everything else is extra.’ ” At home they took turns to play with him intensively all day, every day, for four years. “He learnt that he could depend on us,” says Normal. “And that we had his best interests at heart.”

These days, Johnny is calmer, happier. For his parents it’s a balance between accepting Johnny how he is and encouraging any progress. They can go on holiday now (“Airports are handled like the D-Day landings,” says Normal), celebrate birthdays. Christmas, though, is ignored. Johnny finds it too overwhelming, says his father.

Normal was born Peter Carroll in a working-class family in Nottingham. His mother died in a car accident when he was 11. He thinks if she hadn’t died he would have ended up being a greengrocer, just like she had been. After school he became an insurance broker, but he used to do performance poetry gigs in his spare time. It was moving to Manchester and falling in with the likes of Coogan and Caroline Aherne that helped him get his break.

I wonder what it must have been like for Normal to live in two such different worlds – high-profile banter with Coogan, James Corden and Ruth Jones at work, and then come home. “I used to think that I was a bit like Captain Kirk in that I was born on Earth and worked in space. Angela and Johnny gave me a centre of gravity. I knew that this is where I was, and while I was outside I was on a little expedition, and I’d be coming back.”

Normal would have liked more children but Pell was focused on making sure Johnny was OK. She was exhausted, especially early on when Johnny barely slept. It means Pell, who is 12 years younger than Normal, has resigned herself to a solitary old age. “I will eventually become too old and frail to manage Johnny and he will move into supported living arrangements. I will most likely die alone. Johnny may or may not come to my funeral.”

Normal says, “The biggest fear is what will happen when we die. Johnny might survive us for 40 years.” The money he made from Baby Cow has gone into a “war chest for Johnny”.

As we talk it becomes clear that the book is as much a portrait of a marriage as it is of a young man with autism. Johnny sounds profoundly content and much of that I’d put down to his parents’ love for one another, as well as for their son. Possibly Normal is the nervier of the two; certainly, it would be hard to be more calm than Pell.

Normal recalls his wife getting angry only once, when he blamed her for Johnny’s struggles. “She told me if I didn’t like it, I should just go.” He looks crestfallen at the memory. I suspect that the thought of a life without his wife in it was unbearable. “It was so difficult. But in the end, it was us who changed, and that was much more empowering. It was down to Angela and me.”

He looks over at his wife, and we laugh as she offers him a tissue.

Rocket Artists Presents Art by Johnny is at phoenixbrighton.org

‘I SOBBED WITH GRIEF AT MY DESK. I COULDN’T COPE’
Henry Normal on the day he received his son’s diagnosis

A couple of memories jump out at me from when Johnny was a baby. I was changing his nappy once and he struggled and I distinctly remember being pleased. I was particularly aware that here he was asserting his own will. It’s a strange thing to come back to me and I can only think it’s because it must have been so out of the ordinary. This was the first moment I suspected something was different about him.

On a later occasion while I was changing his nappy I spoke to him and all I recall was the look on his face. It was a look of confusion, not mild or temporary confusion but the sort of look you’d expect from an Alzheimer’s patient. It disturbed me. I wasn’t sure what it meant. I wondered if he didn’t like me. Was I doing something wrong? It was as if I wasn’t his dad. As if we weren’t connected. As if we had never met.

With hindsight I now realise that the fact he never raised his arms to be picked up wasn’t standard behaviour for babies. He never crawled; before he learnt to walk he shuffled along on his bottom. Also, he would clench and unclench his fingers, which could have been a strategy to help him feel in control of his environment.

I knew I loved my son. Yet underneath the surface I could feel there was a strange emptiness in our lives. I didn’t understand it and I would never mention it to my wife, Angela. To be honest I was a little embarrassed at the thought that it was me. No, embarrassed is not quite the word – ashamed.

While we were at home we could grit our teeth and get through the bouts of crying, the sleepless nights, the worry about Johnny’s antisocial behaviour and lack of response; but the real problem was when we went out. We had a couple of friends who discuss films and comedy and other trivia couples talk about when they don’t have kids. In many ways they were us before parenthood. But when we visited them in London with Johnny approaching his second birthday it became apparent that our lives were now so different.

Johnny cried continuously and nothing Angela or I could do would calm him. Nothing appeared to be getting through. It felt like the longest night of my life. I was embarrassed. I was confused and frustrated and at a loss. And I did the worst thing I could do. I blamed my wife Angela.

Johnny with his mother, scriptwriter Angela Pell, at home in Brighton
Johnny with his mother, scriptwriter Angela Pell, at home in BrightonTOM JACKSON

I love Angela to her bones and yet here I was betraying her. Maybe this sounds overdramatic but in that moment I had nothing to hold on to. Angela doesn’t argue, so she took my rant in silence and, driving away from London the following morning, I felt sick inside. I wanted to escape.

I can see why parents with an autistic child often break up. There is a desperation. It felt like I didn’t know who I was. I was lost.

I’m not sure this story would go down so well at a live performance. This is the day I knew something was wrong with my son. This is the day I had to stop pretending it was all going to go away.

Finally, Johnny was seen by a specialist. This would be where we would start to put matters right, I assumed. A woman I had never met before and have never seen since took us to a room without windows. She handed us a leaflet for the National Autistic Society. On the front of the leaflet was a logo of a child crying and the word “incurable”.

It’s not easy to remember the exact words that were spoken that day. The main thrust of the conversation was the triad of impairments. Johnny had problems with “social communication, social interaction and social imagination”. These were not things we didn’t already know but now it was official, and these phrases certainly sounded official. What this all added up to, we were told, was autism.

We were told our child was “mildly severe”. I still don’t quite know what that means.

When we got home I was numb, trying to take it all in. There we were again, alone as a family, like coming back from hospital after the birth, only this time with a task 1,000 times more daunting.

Angela made something to eat. She was very strong and resolved to do whatever it took. She came up to my office to see how I was getting on. I was collapsed over the computer sobbing with grief. “I can’t cope,” were the only words I could say. “You can,” she said. I was more than embarrassed. This is not the image of the stoic hero I’d looked up to as a child. Clint Eastwood as the Man With No Name, seeing all but saying nothing. Showing no emotion, just defiance in the face of overwhelming odds. How could I let Angela down? How could I let my own child down?

I had no choice; I would have to cope. No, it was more than that: I would have to fight.

———-

I’m not sure when I last saw Johnny cry. It was many years ago. Probably when he was about eight and feeling ill. Angela tells me she’s seen him well up since on the very odd occasion when she’ll shout at him, in pain, to stop pinching her lips. When he’s really upset he’ll bite the back of his hand. As he’s never eaten a sweet, other than an occasional mint in the car, his teeth are quite healthy and strong and some bites have been so deep that we have had to put bandages round the wounds.

When he was two it was a different matter. He would hit and bite Angela and me and anyone else who got in the way. Even though it was painful, I decided that I wouldn’t rise to the bait. We never smacked Johnny, although occasionally in those early years we’d shout at him out of exasperation. Always later we’d try to explain calmly but we were never sure how much, if anything, was sinking in.

Up to when Johnny was around ten, if you left him alone for five minutes you were never sure what you’d come back to. Once Angela left him in a room where they’d earlier been playing with red paint. When she returned, it looked like the scene of an axe murder. Another time, returning after having nipped to the toilet, Angela found Johnny had coloured in his private parts with black permanent marker.

He went through a stage of nicking people’s chips right off their plates in restaurants and cafés. We talked to him time and time again, but he would never give us any. Not everyone affected saw the funny side of it.

The only reference I had to autism before Johnny’s diagnosis was Rain Man. I liked Rain Man, but it’s not the Tom Cruise film I’d previously thought would be most relevant to my future. I was hoping for something more glamorous, like Mission: Impossible. Although the title Mission: Impossible did soon start to seem relevant.

I must say, unlike “Rain Man”, Johnny has no savant qualities, though he does have a very good trick where he suddenly claps really loudly and gets us through queues very quickly. It’s worth instigating at the right point in time. We’ve been escorted through airport security before now. They didn’t seem bothered that we might be a security risk. Johnny’s sudden loud claps in the bank are always interesting; bank tellers can get a little nervous.

When we first found out that Johnny was autistic, we looked at everything we could find that might help. We looked into PECS, which sounds like a gym for musclemen but is a picture-based communication system; ABA, which sounds like a boxing association but is a teaching system; and Tomatis, which sounds like tomatoes, but is a listening therapy. We tried oxygen therapy in a pressure chamber, homeopathy, music therapy, art therapy, a gluten and casein-free diet, supplements, omega-12, some weird exercise that took him back to the womb and, of course, swimming with dolphins. Let’s face it, like any parents, we’d have skydived playing the ukulele if we thought it would help. (It wouldn’t help, I’m fairly sure.)

Every Saturday morning I would sit down with my laptop and go through the Google Alerts for autism. I’d read about young autistic kids being helped by dogs or surfing, or suddenly speaking because they’d found an interest in music or art or video games. Angela and I were open to anything. We went to several conferences and listened to lectures on how the brain works and the latest theories on education. We wore our name badges saying “Parent”. We bought the books and DVDs, read the leaflets, the magazines and the web pages.

I have recently had strangers ask about Johnny, saying, “What’s wrong with him?” To which I always want to reply, “Nothing’s wrong with him; he’s autistic. What’s wrong with you?”

Generally, though, I find Johnny brings out the best in people. I know he brings out the best in me.

———-

Johnny will be 20 this month. Angela and I were drinking a cup of tea in bed a couple of weeks ago and Johnny was in the upstairs office, having finished playing on the computer, when we heard him shout to us one word: “iPad.” Nothing else, just “iPad”. We burst out laughing. He sounded like any other lazy bloody teenager. The thing was, this was the first time he had ever shouted for something from another room. This was a good day. You have to celebrate these small victories, I feel, and little by little they all add up.

Angela and Johnny, Brighton, 2007
Angela and Johnny, Brighton, 2007

As I walked down to the beach this December with Johnny, unprompted he declared, “The café is closed.” No one had used this phrase that day; it wasn’t echolalia. No one had asked him a question. It was a genuine comment, perfectly audible and directed at me. This was the first time in his life I could be sure he was voluntarily communicating, verbally, an observation of the world without any outside instigation. Now Johnny is motivated by food and drink, so I’m sure that this was part of the drive, but it was certainly a breakthrough moment. He was comfortable enough with my presence and confident enough to speak.

Occasionally at home, when we sit at the table waiting to be served food, he will sing, “Why are we waiting?” There is certainly an element of fun to the song and to his mum’s mock outrage, which he enjoys. If Johnnyis singing it is quite likely he is in a good mood. I must confess I am to blame for teaching him this song and there have been a few embarrassing times in restaurants when I’ve regretted it.

Johnny wakes up early. Too early for me. Usually between 3am and 6am. Nowadays Angela can usually persuade him to go back to sleep, but he is still ready for breakfast by 7am.

Before Johnny, the prospect of an early night would usually mean sex. Nowadays not even sex comes before the opportunity for a decent sleep. I do a joke sometimes on stage. I say, “Now I’m semi-retired Angela and I get to spend more time together. The other afternoon she said to me, ‘Johnny is at college and we have the house to ourselves. Let’s have sex.’ ‘That’s all very well,’ I said, ‘but when do I get some me-time?’ ”

Now although it’s a joke, it does play to a truth that many parents of autistic kids face. What with planning, preparing and anticipating, or even reviewing or tidying up and putting stuff away, there is never enough time to just chill. Stacking the dishwasher or watering the garden are things I enjoy just for the escape of a mundane task that doesn’t tax the brain. Mindless television or even staring out of the window can seem a luxury at times. Angela told me today that going for a mammogram meant she had a lovely quiet 15 minutes to herself.

This may seem a little over the top and Angela and I both try to take each day as it comes. You never know though when even the simplest of things could present a problem. There was one day when Johnny was about seven; he must have been thirsty. Turning our attention from him for a few moments, we didn’t see him take a bunch of daffodils out of their vase and drink the water. We spent the rest of the day in hospital with Johnny being treated for poisoning.

The biggest problems we’ve had with Johnny’s schooling over the years have been with his hitting teachers, pushing and hitting fellow pupils, or biting the back of his hand so badly he still has scars. He even had a phase of night terrors and Angela did wonder if he’d developed epilepsy, but it was just the transition from one school to another. Nearly all these problems come down to sensory overload. If people get too in his face or sounds get too loud Johnny needs a coping mechanism. We are lucky that his schools and now the college have instigated a quiet room for him; when overloaded, Johnny will choose to go in there, and when he is feeling able he chooses to rejoin the class.

When Johnny turned 16 we were told he wasn’t legally ours any more. Because he’s officially “mentally incapacitated” he became a ward of the state. We had someone from the government visit our home, and they came in, and went to talk to Johnny. The woman asked him two questions, then, realising he wasn’t able to answer, she came and talked to me and Angela. I don’t mind admitting I was scared by this visit. I didn’t know what was going to happen. I had this terrible feeling that our ability to protect and nurture Johnny was no longer in our control. Everything we had put in place to help him seemed under threat. Well-meaning as she may have been, this woman didn’t know my son. Did she even like him?

Even now we are still wondering what this all means. Do we have to ask someone’s permission to take him out of the country on holiday? We’ve been abroad several times and not been stopped at the border. Do we have to ask permission for medical treatment? Well, he goes to the dentist regularly and occasionally to the doctors and nothing seems to have changed. Can we even cut his hair or his nails? Stupid as it sounds, these are questions that have occurred to us over the past couple of years.

How could I tell this woman what our son is like? How can I explain the journey we’ve been on? The challenges he’s overcome, the progress he’s made and continues to make, albeit almost imperceptibly slowly at times? She doesn’t know his routines, the extent of his noise intolerance, his favourite foods, his artwork, the people he gets on with, his love of walking, his trips to the tip with his grandad, his dislike of scarves, his favourite books, his films, his love of music, the fact that, every once in a while, without any warning, he won’t walk on a bare hard floor in bare feet, where he enjoys getting his hair cut, what he can do himself and what he can’t, what he means when he says words that don’t seem to make sense to anyone else. She doesn’t know he will put his arm around you while watching television, that he can swim in the sea, or take his shoes off and walk with you along a beach as though everything in the world was perfect.

I can’t remember what exactly we said at that meeting but in the years since, we have never seen that woman again.

We hosted a music-themed quiz night recently at our home with about 20 friends in fancy dress. Angela was the quizmaster, dressed and made up as Amy Winehouse, complete with fake tattoos and pretend cigarette. We don’t have that many friends round very often as we are never sure if Johnny will cope. We gave him plenty of information in the days leading up to the quiz and got him involved with the preparations. Johnny has at times sported very cool sideburns, so I came up with the idea that he and I could both come as the Blues Brothers.

Angela took some photos and Johnny delighted in getting involved. Over the course of the evening friends and family arrived as Abba, Dr Hook, Ginger Spice, Lady Gaga and others I can’t remember – or possibly didn’t actually recognise. Despite the heightened noise, Johnny wandered around the periphery enjoying the atmosphere. Everyone complimented him and he looked comfortable having his photo taken. Angela and I were relieved, but more than that we were so proud and impressed that he was not only coping but really enjoying the event.

The quiz was to get under way after his usual bedtime, so I asked him if he wanted to go to bed. He confirmed “bed” without any hesitation, so he said a big “good night” to everyone and I took him up the stairs. We closed the bedroom, quietening the noise from downstairs, and I started to help Johnny get out of his costume. “What’s wrong with me?” he said.

He often repeats words and phrases from films and I couldn’t be sure that this wasn’t just a phrase he picked up, but the timing and the nature of the phrase stopped me dead. “What’s wrong with me?” he repeated. It was like time stopped and my head filled with so many things I wanted to say. It didn’t matter whether it was something he was just repeating, I reasoned. Of all the questions or phrases he could choose, why would he choose this one now? There were so many things I wanted to explain to him. There before me in this quiet room was my 19-year-old son, going to bed at 8.45pm rather than joining in with our family and friends in a night of fun and laughter. He looked so grown up now in his shirt and tie. He looked smart and cool and he stood there taller than me, asking the most difficult question in the world. I just wanted to hug him and kiss him like he was a baby again, all 16st of him, but he was a man now. I squeezed his arm and said the only words that would come to me. “There’s nothing wrong with you,” I said. “You’re my son and I love you.”

Johnny got undressed, put his pyjamas on and cleaned his teeth. “Do you want a story?” I asked. “Finding Nemo,” he requested. We lay on the bed and I read him the book. Then I closed his bedroom curtains and said good night. I walked down the stairs and into the living room, where the quiz was in full swing.

I sat in my Blues Brothers costume and put my shades back on. At the end of each round I totted up the scores and announced the leaders, but in reality I was still upstairs standing in front of my son trying to find words. Even writing this today I’m still standing there.

© Henry Normal and Angela Pell. Extracted from
 A Normal Family: Everyday Adventures with Our Autistic Son, published by Two Roads on March 22 (£16.99)

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

Royal Parks Half Marathon for The Fred – Fred’s mum is running it…https://uk.virginmoneygiving.com/fredfoundation

0 Comments | This entry was posted on Feb 18 2018

https://uk.virginmoneygiving.com/fredfoundation

 

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).