SUNDAY BLOG: THERE ARE NO WORDS

The A Word

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We get all upset when someone we support gets kicked out of Strictly Come Dancing.  We get really het up about Brexit although we no longer have any control.  It really annoys me when I go all the way to pick up something I want from a shop in town only to discover the girl on the phone had made a mistake and they were out of stock.

What can you say?

You can say ‘so what’, totally immaterial  when you  remember there are much more vital and terrible things going on in the Middle East.

There are no words to adequately reflect the grief felt  at the news of 345 men and boys shot dead, bombed to death, 45 minutes of carnage, can you imagine, 45 minutes of shooting?  No wonder there were only a few survivors.  Suddenly a town of widows their men gone.  Women stunned to realise their men had been murdered, sons, brothers, cousins, husbands, innocents mowed down at prayer in the mosque in the most brutal way.  And you know what, the spotlight has already moved on.

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And what of the 128 or so injured, their lives will never be the same, no one’s live will ever be the same.  If we were becoming desensitised to atrocities of this nature, this surely is a wakeup call.  It’s been said there may never be a claim made by the murders such has been the worldwide disgust but the fact they were carrying Islamic State flags might be a giveaway and it’s probably well known to those in authority hence the air strikes by Egyptian forces.  The feeling of frustration is immense, even words fail.  Prayers are inadequate but it’s about all that’s left to us.

Our Happy Home Place

I had the pleasure of contributing to Woman’s Hour last week along with Rosa, a young mother from Ballycastle and Kellie Turtle,  of the Woman’s Resource Centre and women’s sector lobbyist.   In about eleven minutes we were tasked with convincing listeners that Northern Ireland is the happiest place for women to live.  Apparently the programme had researched women’s status in England, Scotland and Wales but for some reason didn’t include Northern Ireland so we were a bit of an after thought.  I only hope we represented ourselves well because, despite everything, I’ve never met anyone from here who didn’t want to live in Northern Ireland!

Autism

The A Word

The A Word

 

Autism is a complex disorder, a spectrum of degrees and in the BBC television serial ‘The A Word’, young Joe, an attractive, determined 9 year old, brings home to viewers his frustrations and those of his parents.
There are three main areas within Autism, social communication, social interaction and social imagination and Joe displays all of these, he can’t carry on a conversation, he’s not happy in company and he has no appreciation of danger or of the outcomes of his actions.
But then so many of us have difficulty in saying the right thing at the right time, awkwardness walking into a crowded room, not confident enough to chat to strangers and we take awful risks at times without appreciating the dangers.
But we’re talking here about something much more serious. The majority of us get through life OK but there are over 30,000 individuals affected by Autism in Northern Ireland and for them and their families it makes a devastating difference to their lives and the lives of those around them.
This is an incurable lifelong development condition that affects how people perceive the world and interact with others. Over 7,000 school children here are diagnosed as having Autism with many more waiting for diagnosis – waiting time is at least 35 months.
As one parent told me, once diagnosis had been given, all they were left with was a list of organisations to turn to for help. Organisations like Autism NI that supports individuals and their families and provide vital services for the 30,000 people affected by Autism throughout Northern Ireland. Their Helpline receives over 3,000 calls each year, and the Family Support Team co-ordinates work with over 6,000 families, offering information and advice and importantly, early intervention services to those with a newly diagnosed child informing parents what to expect.
In one case a seven year old decided to wash the cat and so followed her mother’s routine and put it in the washing machine. Thankfully it was rescued before the worst happened. I’ve noticed that Autistic children are logical in their thinking, there’s reason to their behaviour, perhaps only know to them.
I was visiting a home and popped into the little girl’s bedroom to say hello and was told to get out in no uncertain terms. I sat on the stairs feeing sad and rejected. Suddenly this pretty little figure appeared beside me and said: ‘I love you Auntie Anne,’ then was off again into her own world. I suddenly realised I’d encroached into that world, she didn’t dislike me, she was just being honest.
What are the signs?
One father explained that his son wasn’t reaching the typical development milestones, he wasn’t progressing with language or play. To him repetition was important be it lining up his coloured bricks over and over again or getting upset when a promise was cancelled. His life required routine for him to cope.
“We noticed he was hypersensitive to noise, he couldn’t cope with sensory overload. The bright lights in supermarkets, the noise and the crowds would frighten him.” So what happens? “When he gets disturbed I hug him tight and he likes the pressure. I carry a little printed card saying: My child is not having a tantrum, he is Autistic, please be patient. I’ve never used it.”
Typical symptoms include a lack of eye contact, disruptive behaviour and most of all difficulty in forming relationships, this is why Autism NI have sessions for schools, employers and parents offering support especially in education, think of the trauma of moving from primary education to secondary. Orla Kelly, training and development officer, organises sessions to explain the intricacies of Autism and how best to work with those with this condition – as simple as slowing down speech, using simple words allowing time for processing and responding and if speech interaction is difficult writing it down. There are many practical suggestions to allow the young person at school or at work to manage to the best of their ability, especially important as across Northern Ireland one in forty children (aged 4-15) in our schools is diagnosed as having Autism, an 67% increase in the past five years and figures continue to rise.
It’s a shattering diagnosis to hear.
“It was difficult enough when my daughter was little,” was another comment. “I could lift her out of situations, she’d run through a store knocking things over, shouting at the top of her voice and making a real exhibition of herself. People were looking at me chasing her and trying to calm her all the time tutting and criticising me for not controlling her or punishing her for bad behaviour. In those days I didn’t explain I just got out of the place as soon as I could.”
A kind word is all it takes to be of support.
“As she’s grown older and stronger I can’t do that so we don’t go shopping anymore.” And that’s sad because there’s a chance such outings will help develop social interaction and give pleasure to the child. Instead they go running to burn up energy.
Every person is different – low functional Autism being the most severe where children have extreme behaviours and are unable to live independent lives. Moderate requires assistance but also means some degree of independence. They will find challenges with communication, often prefer their own company to the exclusion of others and again repetition is evident and distress when their normal routine is disrupted. Other children are wary and it takes a toll on parental relationships. High functioning Autism is the mildest form of this disorder and many will live and work normally. Their use of language and conversations can be difficult but they are less likely to display anti-social behaviours. Many develop an interest in a single topic and excel at their chosen subject.
Much more to be said and for professional information www.autismni.org – advice line 028 9040 1729 and please read Welcome To Holland, an essay by Emily Perl Kingsley written about her Down’s Syndrome son who went on to become a successful actor. It applies to so many aspects of life.

 

Welcome To Holland.

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

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But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

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But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.” 

Written by Emily Perl Kingsley

 

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2 Comments on SUNDAY BLOG: THERE ARE NO WORDS

  1. Shirley Gault // November 26, 2017 at 10:59 am // Reply

    Yes Anne have been to ‘Holland’ on a few occasions I really wanted to be in Italy! Your way with words covers so many aspects of life , thank you 🙂

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