Posted in Digital Democracy, Motherhood, Pembrokeshire Post

Tuesday Terror

To avoid emotional paralysis I turn to my blog for an outlet and some calm. Steady steady, you are a grown-up: pointless hand-wringing will do no good.

On days of shock and outrage Twitter gives a blow-by-bomb account; we are all journalists now. Most of the country woke up to the news. I heard it in the wee small hours and in my sleepy state kept wondering if I’d been having a nightmare.

What I  learned: apparently late last Monday night a man detonated some sort of nuts and nails device in the box-office foyer area of a major venue in Manchester; positioning himself adjacent to 21,000 mainly girls and mums enjoying a teeny-bopper night out; he killed himself and 22 (including an 8 year old little girl) and physically maimed 60.

He caused carnage and chaos and succeeded in bringing a city of diverse communities together in crisis as taxi drivers switched off their meters, hotels and locals opened their doors. 60 publicly-funded ambulances alongside armed police arrived within minutes. People gave blood.

Every woman and child had been searched by security on their way into the auditorium, each stick of lipstick inspected. Their murderer, armed with explosives, simply sauntered unchallenged into the public entrance hall (holding a suitcase reports later suggested).

I get that wherever the security is set up there will be the world beyond that line but it still sticks in my craw.

City dwellers will now see soldiers positioned at significant venues and a higher number of armed police will be on the streets. The ‘threat level’ is raised to ‘critical’.
These atrocities create fear, panic, loathing, upset. They also inspire people in a weird way. People get the opportunity to be amazing and kind and good.

Bombings are going off all over the world of course. It’s been a major news item from various countries around the world my entire life. I do not want to feel more grief for the death of victims in this country compared to other places, because we are all members of the human race living on just one planet together. But it is shocking nonetheless.

I shake myself out of a feeling of dispair. Such situations can capture people so that we all become hostage by freezing and becoming ineffective in our own lives.

It was tempting to fall down but I pulled myself up and into action.

It’s because the mundane everyday seems at odds with the harrowing anguish being experienced by those directly effected. But I know that keeping calm and carrying on is the only response.

And so I do so, sorting out the day-to-day details that my own children are relying on. Order more heating oil. Pick up and clean a ‘new to me’ picnic set for future happy excursions. Call the washing machine company AGAIN to get progress on a repair job now 6 weeks old.

I box up old videos and start to tackle my messy guest room. Family is coming to stay soon. It feels strange. I realise I’m numbing myself. My tears and sadness won’t change or improve anything. But attending to the details of my family’s life will.

Acting out of love is all the weapon I have against this hatred.

I pull food from the freezer and begin to plan a meal. There are bills to pay and I’m interviewing someone for a job this afternoon.

The position available is to help local rural communities work together on ideas to improve their lot. It’s what is known in the trade as ‘community engagement’.

It seems somewhat trite, today of all days, but I know that disengagement can lead in some extreme cases to murder and mayhem. And this reminds me that things are not so futile. All our small efforts working with others do in tiny ways make things better.

I’m contacted by a grandmother whose daughter has been told her unborn child may have Down’s Syndrome and they are desperately worried.

I do what needs doing, making use of social media to help connect those who feel desperate with those who have knowledge and can help.

And I wait for the return of my teenagers; sad for those whose children never went home today.

Posted in Digital Democracy, Media, Motherhood, Pembrokeshire Post, The Up-side of Down's, Uncategorized

A World Without Down’s?

I’m a big fan of Helen Fielding’s ‘Bridget Jones’s Diary’. When I first read it, some of it felt EXACTLY like my own diary – especially the daily stats on weight; food and alcohol consumption and generalised bitching about this squeeze or that. Well, OK Fielding’s diary was FUNNY!

Continue reading “A World Without Down’s?”

Posted in Motherhood, My Grand Disaster, Pembrokeshire Post, The Up-side of Down's

Shhhh it’s all on social media

A sneak peek into the secret world of social media

And how it’s saving Down’s syndrome

By Sarah Hoss

Down's is a medical term; not my label. Social media is being successfully leveraged to help society improve its attitude towards disability.
Down’s is a medical term; not my label. Social media is being successfully leveraged to help society improve its attitude towards disability.












Social Media (Facebook, Twitter, blogging, Pinterest, LinkedIn etc.) – or ‘Shmedia’ as I like to call it – is saving Down’s syndrome.

That’s a very bold statement. Stay with me, and I will show you how. But first, a little personal history:I was holed up in a leaky caravan in remote west Wales when I first began searching online for information and inspiration about Down’s syndrome. I was involved in a restoration project at the time. As a family we had a temporary caravan base for work and living space. Outside I was growing my own vegetables and keeping livestock. Sounds idyllic? I found it very tough.

Continue reading “Shhhh it’s all on social media”

Posted in Motherhood, The Up-side of Down's

Living with DS. My life’s nice! How’s yours then?

I wrote this a while back but I stand by it all. Tomorrow is World Down’s Syndrome Day – so I’m reblogging to raise awareness. Peace and love 🙂

Sarahhoss's Blog

My daughter and disabled son all dressed up for a weddiing We do occasionally get invited – and we do dress appropriately 🙂

It can be a tough road, with many potholes along the way. A great deal of information about what a disaster Down’s Syndrome can be is available already online. I don’t intent adding to it! Instead, I prefer to accept that for many, their mindset is such that they will never manage to get over their own discomfort and that becomes a barrier for them in seeing beyond the disability to the person and the valuable life that they are leading.

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Posted in Arts Review, Friendship, Motherhood, Pembrokeshire Post

New colts in the stable

Trotting round the county agricultural show of this particular shire I am enjoying and enduring family, familiar fun and attractions that marquee-based organisations offer such events; networking and soaking in the atmosphere of light drizzle and grizzling buggy-tied babies; brass bands, brassy mammas and farmer types; motorised senior citizens on their scooters, city-folks up for the day looking dazed, and the countryside crowd all mingling with the best brawn and beef that this green and lush part of Wales breeds, rides, kills and eats.

Continue reading “New colts in the stable”

Posted in Arts Review, Motherhood, Pembrokeshire Post, Uncategorized

Energy of youth raises funds and hopes

It was a tale of two cultures this evening as I hot-footed it up to the rural village of Boncath in the Preseli’s  to the Urdd Eisteddfod, (where my youngest was performing) – while a few miles away another group of youngsters was preparing to showcase the songs, dancing and beats of their home village too – from Madadeni, South Africa.

Continue reading “Energy of youth raises funds and hopes”

Posted in Motherhood, The Up-side of Down's

Is Down’s Syndrome Cool?

Hello is it me you're looking for?
Hello, is it me you’re looking for?

‘Get me an agent’











I have the occasional word about my experiences around Down’s Syndrome on this blog, and tend to keep this aspect of my life separated from my professional life as a journalist and PR. But this week my worlds collided, leaving me wondering if this post belongs on my personal or professional blog. Perhaps I will post on both?

In the week that I attended three interesting conferences – one about Autism and two about social media my social networks were buzzing about a little boy with Down’s Syndrome chosen to model for mainstream British retailer Marks & Spencer.

Suddenly Down’s Syndrome is cool! That is a sentence I never thought I would ever have the need to write.  Amazing things do indeed happen.

Continue reading “Is Down’s Syndrome Cool?”