The Dwyer Family Blog

The Dwyer Family Blog

Steve Unwin - Theatre Director and Chair of KIDS

RosiePosted by Rachel Dwyer 19 Oct, 2018 07:29PM

I was lucky enough to hear Steve Unwin speak on Thursday at a conference 'The Cultural inclusion manifesto' - which really means making the arts accessible to ALL .
I couldn't possibly have written down what he said ,it was too emotional and very earthy . So as a second best ,i found this article that he wrote around 6 years ago
''Some people would say that my second son is stupid. I understand what they mean. But it's a word that I've come to use less casually than most. Just a few days before the opening ceremony for the Paralympic Games, he had a pretty significant birthday. But while most boys would have celebrated turning 16 by tasting the forbidden fruits of adult life and drinking too much cheap cider, Joey blew out the candles on his birthday cake with a giggle of excitement, jumped up and down with pleasure unwrapping the presents he'd been given and went to bed – entirely sober – at 7pm.

Because, you see, Joey is very different from most 16-year-olds. He has profound and multiple learning difficulties. His condition is still undiagnosed, although it's almost certainly the result of a genetic glitch. He's an attractive boy, with a shock of brilliant blond hair and a dazzling smile. But he's very small, sometimes painfully thin and suffers from severe epilepsy. His coordination is poor and he's extremely timid. He's terribly vulnerable and when the epilepsy is bad, he's pitiful. Most significantly, he has very restricted cognitive abilities and only a limited understanding of what is going on around him. He communicates in rudimentary Makaton Sign language (and makes noises with a clear commitment to what he wants) but has never uttered a single word: not "mum", not "dad", nothing. What at first was termed "developmental delay" is now quite clearly a profound and serious learning disability.

Joey does learn, by modelling. I once spent the best part of a weekend showing him how to put on a sock (it's counter-intuitive: you have to pull the heel in the opposite direction to get it round the corner). He can write a handful of words: but the great challenge is getting him to understand the relationship between the word and the object.

He's pretty adept with an iPod and watches a handful of Pixar films over and over again ("a gold medallist in repetitive DVD watching", as an uncle of his affectionately quipped). He listens to his four-year-old sister's CDs but loses interest when it's not playing one of his two favourite songs, and can't be tempted to follow the books that we read her.

He loves pulling at willow trees and watching flowing water, and bounces up and down in delight at the sight of a passing train. He's very sociable and quite capable of accosting complete strangers in the park to point out to them the trees, the trains and the water that he loves. And, gloriously, his brother enjoys making him laugh so much that he farts and sometimes wets himself.

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He goes to a brilliant special school in Waltham Forest – Whitefield school is the sort of place that restores your faith in society. He attended a mainstream primary school for a few years but the great dream of inclusion requires things that are impossible in a busy state school. Securing the right statement of special educational needs required endless letters, phone calls, lobbying and legal advice – and when it finally came through I tried to imagine what it would be like for a child with less pushy parents (I'm proud to be one for Joey). And the enormous form (thankfully, about to change) required to claim disability living allowance is a masterpiece of bureaucratic hurtfulness. As Joey's parents, it's essential for our sanity to hang on to the positive as much as we can, but to make the self-evident case for support we have to stress how helpless, vulnerable and problematic Joey is on every one of its almost 50 pages.

Many different specialists have seen Joey, but there is a limit to what they can do, and one of the big challenges has been accepting that the medical profession does not have the answers. For the most part, they are careful to take into account his particular problems, but learning difficulties can make hospital appointments a harrowing business: just getting him weighed or taking his blood pressure is traumatic enough, but pinning him down while the anaesthetist at Great Ormond Street hospital held the gas to his face is something I never want to go through again. He had no idea what was going on, and we couldn't explain a magnetic resonance imaging scan in terms that he could possibly understand. For a boy who hardly uses his vocal cords, his screams of terror were heartbreakingly loud: it felt as if I was holding his face under water.

The circle of Joey's life is small: school, home, the park, the occasional holiday and his family. We have to be careful about what he can cope with: we couldn't take up free tickets for the water polo at the Olympics because he can't cope with loud noise and crowds. He's terribly sensitive to other people's moods and gets very upset if anyone around him is cross, even when it's not directed at him. As he's grown older, he's become more emotional and, in moments, swings from extremes of giggling, laughing and cuddling to weeping, thrashing and floor-hugging despair. Being around Joey can be pretty exhausting. He needs very careful handling and many a plan has been scuppered because we expected too much of him.

People sometimes say sympathetically, "Oh, Joey is such a tragedy." In some ways they are right: we all wish that Joey was developing along more normal lines. But it's also counter-productive because it reinforces the negative and does nothing to help relieve that "tragedy". Another reaction is, "Surely something can be done, let's throw money at the problem." Again, well-meaning as this undoubtedly is, it doesn't help anyone, least of all Joey. The fact is, there are no miracle cures for Joey, no simple happy endings: it's the people around him who need to change and the challenge of Joey's disability will be with us all our lives.

Joey has had a huge impact on his large and, frankly, high-achieving family. We've all been through a range of emotions: confusion, denial and despair one moment; optimism, humour and determination the next. Looking after Joey on a day-to-day basis is very hard work – he can't do much for himself, needs dressing and undressing, wears a nappy at night and can't be left alone – and it's important for everyone to get some respite.

But I was so moved watching him jump into the arms of his elder brother, an undergraduate at Cambridge, outside the main gate at King's College: it felt as if the walls between knowledge and ignorance, pomp and simplicity, the elite and the dispossessed might, for a moment, come crashing down.

Our society has a confused attitude to learning disabilities, which are all too often swept under the carpet. Physical disability is much easier to relate to, and it's hard to construct narratives of heroic struggle against the odds for people with learning difficulties. There are no obvious role models, no Stephen Hawking, no Oscar Pistorius and no Stevie Wonder, no high-functioning people with profound learning difficulties made Companions of Honour, winning Paralympic medals or being hailed as musical geniuses. And, despite the tremendous work done by Mencap and others, there are still issues with the way that they are treated by the rest of society. The Papworth Trust recently published research showing that 90% people with learning difficulties have experienced hate crime or bullying, and almost a third say that it takes place on a daily or weekly basis.

I was brought up to value language almost more than anything else and, as a theatre director, it's integral to my work. I'm ashamed to say that as a young man I was completely ignorant of people like Joey and assumed that people as well-educated as me couldn't possibly father children like him. But I think I've learned the hard way that words aren't everything, and by looking into Joey's eyes and watching his behaviour, I've seen something beyond words, something that lies behind the words, something that can't be expressed in words. It's been the single biggest challenge of my life, but also the most rewarding. Because Joey, in all his fragility and his vulnerability, has opened my eyes to the real meaning of difference, to the tyranny of normality, to another way of thinking about human beings.

Joey is what the religious would have called sancta simplicissima, a holy fool. And, yes, he's "stupid", and there is no getting away from that. But the great lesson that he offers – which we all forget at our peril – is that being clever isn't everything. And that nothing is too good for those who cannot help themselves



...with laughter

RosiePosted by Rachel Dwyer 18 Oct, 2018 07:48AM
I was greeted at breakfast by my Thai student dressed in full Harry Potter regalia - made me howl !
( he's 32...and the teacher of the group !)



Jane Rosemary ( how she hated that name ) Brown

RosiePosted by Rachel Dwyer 16 Oct, 2018 08:44AM
My little Jane Brown's birthday today - she would have been 66 .
She had it tough ,but we always did good birthdays and pushed the boat out and I know I'm in danger of repeating myself - but we bestowed on each other the highest level of trust , when we agreed that we were the only person we'd let order from a menu for us .

D.I.D

RosiePosted by Rachel Dwyer 15 Oct, 2018 08:19AM
I love Nile Rogers .

A few years ago ,I was lucky enough to see him ,and Chic , perform in a small space .He was amazing .Everyone danced and sang and came out a lot happier then when they went in ...

But why did he chose 5 ( out of 8 ) records ,that he'd produced or sang on , to take on his desert island .It seemed a bit odd .

And while we're on the subject , Lauren Laverne . A bit like Jo Whiley on Drivetime , a really bad and wooden choice .I would have gone for Simon Mayo - brilliant with people and does great interviews

Wish i could have seen it - the exhibition ,not the dog

RosiePosted by Rachel Dwyer 13 Oct, 2018 04:06PM
I was a bit scared this morning .

My friend and I set off on our Marble Hill , put the world to rights , walk , when about 7 yards in front of me I saw a brown ,baldy ,thin, dog running towards me - I just knew something was going to happen when he didn't appear to slow down or make a slight body swerve.

He then made a huge leap up and smashed into my top of the chest/ base of my neck bit .I really thought he was going to bite me . He jumped down and then back up again , while I screamed to his owner ( who looked as petrified as me ) ''get him off me'' , to which she replied ''he's only a puppy'' to which I replied '' I don't care if he's 100years old'' , he shouldn't be let loose .

There was no blood , no bite , but I couldn't stop shaking .My friend , who has 2 little dogs , said she'd never seen a dog jump so high . I don't know if that's a badge of honour for the dog or me ...

So when I get home and took a look at Instagram , this put a big fat smile on my face .....

https://www.instagram.com/p/Bo3YkH5BXeg/?hl=en&taken-by=tenement_house_nts

Rosies' Friends- I doubt they are aware of how lovely and inspirational and important they are

RosiePosted by Rachel Dwyer 07 Oct, 2018 10:11AM

I don't spend my whole life , thinking about , reading about , listening to stories about .... grief . But I'm drawn to it . I don't mean to dumb it down , but it's like dieting - always hoping there is a miracle cure and if there's not ,sharing other peoples stories and getting hope / less feeling of being a failure / encouragement , from hearing them . But all the time knowing there is no magic wand . I'm stupid really .

So this week , it was the omnibus edition of Listening Project ''Changed by Loss- the impact of sudden death or suicide of a young person,on those left behind ''. Three stories to break a little bit more off your heart - my words not the BBC's .

So here comes to the link to this website - friends .

The first Mother ,talked of her son ,who took his own life . She spoke so fondly of his friends ,and what a great source of love and support they had been to her . I can only mirror her words and celebrate some of them with the photos that Darren has chosen-

Rosie with Florence and Jacob('s arm) in California

Rosie with Laura and Joe C in Benicassim ( I think )

Rosie with Georgina at The Drayton Prom ( I think )

Bless them all



Glitter

RosiePosted by Rachel Dwyer 06 Oct, 2018 12:15PM
About half an hour ago there was a knock on the door - it was Postie .

He handed me the parcel and asked me to sign in the magnetic box with the magnetic pen . But I couldn't - my eyes were full of tears , i couldn't see properly, I couldn't speak and my nose was about to drip . I gesticulated for him to wait while I retrieved my linen hanky ( for those of you who know me , I always carry a hanky because I do cry a lot and I never know when it is going to happen ) and then I scribbled RJ somethingorother.

Why the tears ? It's a Saturday - the joy of the weekend .We'd had some special friends round to supper last night .We are going to new, never been to their house before , friends , for supper tonight .We await a Thai teacher tomorrow ( not a teacher whose going to teach us Thai ,but a teacher whose bringing his Thai students to London - all bar one , who was meant to be staying with us , but was refused a visa ) , we have nice things planned , it is raining -which means my goldfish is happy.

It's because I dug deep and stole myself to watch BBC's ''George Shelley : Learning to Grieve''

In May 2017, George 's 21 year old sister ,Harriet died in a sudden accident. He has spent the last 12 months trying to cope with her loss and has struggled to talk about it. He has suffered with depression and anxiety and in a bid to help himself cope better, and to understand the impact grief has had on his life and mental health, he made this documentary.

Lots of things hit home , too close at times - being strong / grieving for the future / life being flipped upside down /the impact of the person's handwriting/ the what ifs? /why ? / thoughts sending the mind into overdrive ....I could write so much , but you've heard it before so i'll just give you george's best analogy of

''grief is that it is like glitter...........

no matter how much you try and tidy it up , you're never going to get rid of it all and you're ALWAYS going to find bits of it somewhere .''

What will we leave in the hall , behind the sitting-room door ,this time ?

RosiePosted by Rachel Dwyer 27 Sep, 2018 08:51PM
Emerald is having her last run of the summer - she's off ( taking John and I )to Eype .
It will be lovely cos it is beautiful and relaxing ( unless you forget half the bed like we did last time), but just not the same without Mary and Tony - we're hoping that one day Mary and the dogs come and stay in a pod , but until then ,we'll gaze misty eyed at the pitch Tony cooked us up a fry-up and thrashed us at Scrabble.

Good luck to everyone doing The Ealing Half Marathon - we're rooting for you

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