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People with learning disabilities are human too – we must all demand change

Recently the BBC’s Panorama programme exposed appalling abuse of autistic people and people with learning disabilities at Whorlton Hall Hospital in County Durham. Despite political promises, it appears that nothing has changed since the Winterbourne View scandal eight years ago.

The parallels between these two cases are striking; in 2011, Panorama showed patients at Winterbourne View being pinned down, assaulted and bullied by staff who were entrusted with caring for them. Eight years on, a similar undercover investigation found residents of Whorlton Hall being needlessly restrained, physically and psychologically abused by care workers.

In 2012, the Department of Health committed to moving many more people with learning disabilities out of institutions, back into their local community and closer to their loved ones. Yet more than 2,000 are still in Assessment and Treatment Units (ATUs) or other inpatient provision. ATUs were intended to provide short-term secure placements for mental health treatment, but the average stay is over five years.

Successive governments have failed on the promise to ‘transform care’ for autistic people and those with learning disabilities. A lack of community-based services means people are stuck in institutions that are inappropriate for their needs. Patients are isolated from the outside world, governed by inflexible regimes and given little chance to express their own identities. Instead of building greater independence, this environment reinforces dependence and foments a culture of dehumanisation.

Policymakers deserve criticism for failing to deliver a transformation to a new model of person-centred care in the community. However there are deeper questions to be asked about how society views people with learning disabilities. Winterbourne View was horrifying, and yet the initial calls for action were quickly pushed down the political agenda. If voters remain ambivalent towards demanding an adequate social care system, the human rights abuses at Whorlton Hall will be quickly forgotten, and nothing will change.

Society is contributing to the attitudes exposed by Panorama. People with learning disabilities are ‘othered’, subconsciously deemed inferior in ways that justify lower standards of treatment. I have no doubt that there are many good, compassionate individuals working in the care sector. However, some staff don’t understand nor relate to the people in their care. Patients are sometimes treated like children, denied the freedom to make basic choices within a safe environment. In other cases, challenging behaviour is wrongly seen to represent malign intent. For example, autistic meltdown might be misinterpreted as a deliberate act of nuisance. This would be met by an angry response from staff who had failed to identify and alleviate the person’s anxiety trigger.

We must re-shape attitudes to bring about a much-needed culture change. After many years confined in institutions, resources should be redirected towards helping patients make the transition into the community, whether that be residential care or supported living. Investment in care workers is essential, both in terms of attracting suitably qualified and motivated people, but also delivering training to give them the right skills. Caring should be acknowledged as a skilled occupation, with professional registration and development opportunities.

Politicians will not act unless we demand change. It is time for us all to recognise that people with learning disabilities are human beings. They have their own fully-formed personalities and interests, likes and dislikes. They feel the full gamut of human emotions. They have dreams and ambitions they hope to fulfil. They are our equals. When this sinks into the public conscience, we can exert our combined influence so that the human rights of people with learning disabilities are finally protected.

Shropshire Disability Network, thanks Thomas for asking us if we can share his blog on our website

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Fighting Dementia-Sharing the Positives.

My name is Phil Slater. As it was Dementia Awareness Week recently, I am hoping you would like to read our story.

My Dad lived with Dementia for 11 years. My Mom (now 84) and my son, who is now 10 years old helped me to care for my Dad at home for 10 years until he was taken out of our hands (against our wishes) and moved into full time care.

Our experience in my Dad’s final year in care is very sad. He was healthy and active, weighing 12 stone when he was moved into care, but he didn’t last 12 months before he passed away at less than 6 stone on the 17th of May 2017. The final year is a story in itself. I eventually hope to share the detail to spread awareness, so that the way my Dad was treated and the mistakes that were made can be learnt from, to prevent others suffering the way my Dad did and the effects it has had on our family.

This isn’t the reason for me sharing my story now. I want to share the positive side that others may find inspiring.
During the 11 years my Dad lived with Dementia we created over 100 positive Facebook posts and videos captioned ‘Fighting Dementia’. They showed activities to stimulate the brain, to show that not all is lost and that our loved ones are still there. You just have to find ways to bring out their true personalities and happiness. This included many armchair sports such as boxing and football. My Dad was an ex-professional boxer and had a great passion for football. He loved taking part in armchair boxing and football.

My son Kodi was born into his Grandad’s Dementia and from an early age he learnt all about the condition, including learning all his Grandad’s favourite wartime songs so that he could sing with him.
The following is a video telling Kodi’s story of his Grandad and how finding a passion in football has helped Kodi to overcome the loss by focusing on something he now loves. https://youtu.be/9d3kvw8QSqU

Sport Bible, an on-line sports news and entertainment site, are due to release their edited version of this next week on their Facebook social media page. They will be including a link to the Alzheimer’s society and they will also include this link to Langdale Care.  https://www.facebook.com/270005893155841/posts/1228130774010010?s=100000273406276&v=e&sfns=mo

Langdale Care in the East Midlands has been inspired by our ‘Fighting Dementia’ posts and incorporated armchair sports in all 5 of their care homes. Kodi and I donated brand new equipment and now 180 of their residents are benefiting from these activities. The feedback has been phenomenal. Something I had been trying to promote for years has finally taken off. I’m due to take Kodi to visit the homes for a photo shoot where he wants to take part in these activities with the residents just like he did with his Grandad and other residents at the time.

Kodi’s own story has been so inspiring during our fight back. He has met the footballer, Dele Alli, after winning his competition ‘Who’s the God Trick Shot Challenge’. Dele now follows Kodi’s Facebook and Instagram page. Some of Kodi’s social media videos have reached up to 11 million views. He has appeared on American TV ‘That Kid’s Got Game’, represented Football Flick (football training equipment) at a major London event and appears in many of their adverts on social media.
However, his proudest moment since he started playing football only 2 years ago, was being filmed for CBBC’s Match of the Day ‘Can You Kick It’. I had to take him to Manchester for trials. He had to complete a course in the fastest possible time. He was up against selected kids from across the country aged 10-15. Most of the kids played for professional clubs. I think Kodi was the youngest and probably the first to appear on the show having only 2 years’ football experience, which is an incredible achievement.

All these positive outcomes have been born from the sad circumstances surrounding my Dad’s condition. We have taken our experiences and built on them. We hope by sharing these experiences we can inspire others in their journey with dementia and can assist carers and relatives support those with the condition.

Kodi and I hope you enjoy the links.

Best wishes,

Phil and Kodi Slater

Autism Acceptance Month

AutismAcceptanceMonth – Awareness is Not Enough

Tuesday 2nd April is World Autism Awareness Day, seen as a global opportunity to take action towards improving public awareness of Autism.

There are approximately 700,000 Autistic people in the United Kingdom. According to the National Autistic Society, 99.5% of the general population have heard of Autism, but only 16% of Autistic people feel that the public really understand them. The implications of this gap in understanding are felt in all aspects of our lives.

Autistic people are significantly underrepresented in employment; just one in six of us are in full time work, and yet over three quarters of those who are unemployed say they want to work. Employment will not be right for everyone on the spectrum, but many employers don’t understand that we can be well-skilled, highly qualified and employable. In addition to personal traits and individual strengths, it is very common for Autistic people to have excellent memory, attention to detail and ability to concentrate on a task for long periods.

While there are some challenges around social interaction and anxiety, these can be overcome by engaging with the employee to identify workplace adjustments. Such accommodations should be tailored to the individual’s needs; they are generally easy to implement and incur minimal costs. For example, the employee may be allowed to wear noise-cancelling headphones at work, or there may be a small amount of additional training for line managers to understand what communication styles will work for the individual.

Four in every five Autistic people feel socially isolated. The difficulties we face filtering out sounds, smells, sights and information can make us overwhelmed and anxious in busy public spaces. A ‘meltdown’ or ‘shutdown’ is an involuntary response to sensory overload. This behaviour can lead to us being labelled as naughty or anti-social. However, meltdown is different to a temper tantrum, and shutdown is not caused by shyness.

Most Autistic people have experienced judgmental attitudes, or even outright hostility while out in public. More than one in four of us have been asked to leave a public place because of autism-related behaviour. These attitudes impose pressure on us to mask our neurodivergent traits, in order to appear calm in uncomfortable situations. Only when we feel accepted are we free to embrace our Autistic identities and express our unique personalities.

Autistic people are living in poorer health and dying younger than our mainstream peers. This is partly due to a lack of understanding across the health and care systems, which creates significant inequalities in the healthcare we receive. A 2016 study from Norway found that people on the spectrum are more than twice as likely to die prematurely in almost all ‘cause-of-death categories’. It is widely known that mental health conditions are much more prevalent within the Autistic community; evidence suggests that stress related to social stigma is the reason behind this.

There are countless Autistic adults who have never received a diagnosis, perhaps recognising that they are different but not knowing why. They may have struggled through years of school, work and daily living without adequate support. They may be known to mental health or learning disability services, but a lack of Autism-specific knowledge among education and healthcare professionals can mean that their Autism goes unnoticed. Diagnosis is often a great ‘liberation’, which provides an explanation for many years of not fitting in.

For all the above reasons, we need to move beyond awareness and bridge the gap to meaningful understanding of how Autistic people experience the world. In light of this, Autistic self-advocates, our loved ones and allies are celebrating Autism Acceptance Month throughout April. This event is built on the neurodiversity paradigm; the belief that Autism is a ‘natural variation of the human experience’; a different way of thinking rather than a deficit.

You can help Autistic people by learning to recognise the challenges that we face, and how we may react in certain situations. If you’re not sure where to start, a National Autistic Society survey (2015) identified the top five things Autistic people and their families want others to understand about Autism:

  1. The need for extra processing time
  2. Anxiety in social situations
  3. Anxiety from unexpected changes or events
  4. Sensory overload
  5. That overload can lead to meltdowns

I am convinced that if everyone takes a little extra time to understand different ways of thinking, society will naturally become more positive and empathetic towards Autistic people. We all have the power to open up great possibilities for those who see, hear and experience the world differently.

Shropshire Disability Network, thanks Thomas for asking us if we can share his blog on our website

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When the Wilderness Called

We thank Ellie for sharing this blog with us. It is an interesting story on how nature has and is helping you overcome anxiety.

My interest in the natural world came back to me at a time in my life, when I really needed something to occupy my mind. During this period the state of my anxiety was at its lowest ebb and I did not know where I fitted in. As a result, I was regularly frustrated, upset a lot and spent large amounts of time in my bedroom. I locked the rest of the world out. Even though at this point, I was on medication and was seeking counselling, I was yearning for anything to break this cycle.

In the latter part of 2012, I was undertaking a job centre six-month employability course in Harborne, Birmingham at the QAC college. Whilst I was there I lived in supported accommodation with several others, and often felt very homesick. However, it was during this time, I began seriously asking the question, what do I want to do with my life. I met some amazing other students who knew exactly what they were planning to do with their lives. I felt envious of them and I feared that, I might end up doing a job that would give me no passion or joy.

As the winter nights began drawing in, a carpet of snow covered the large garden adjacent to the house. Each evening before I went to bed, I would regularly look out the window upon this pristine snowflake threaded ground. The landscape surrounding me echoed my seasonal state of mind, cold and isolated. My only comfort was writing, it was the only thing I knew and all I lacked was a subject that would fill this void of expression so deeply embedded within me.

One night after reading, I had quick glance at the winter palace outside and closed curtains, turn off light and huddled into bed. A few hours later, I heard what could only be described as a murderous scream, I jumped out of bed and looked out the window. I saw something but I could not make it out as it disappeared into the night, some people who I lived with were frighten but I was intrigued. This sound made the feel a rush of adrenaline and woke up a sense of excitement inside of me, which I had not felt since I was a child.

Then it happened again the following night and I rushed over to my window and threw back the curtains. It was looking directly towards me, it had a feather duster tail, and lanky legs with black socks on and rather prominent snout. The mysterious creature was Vulpes vulpes, a vixen fox calling to tell potential males, that she was ready to mate. It was fascinating witnessing the natural history of this species play out in front of my very eyes.

The fox’s call lit a flame in my soul and reignited a passion which I thought had long since gone. It was a call from wildness to rewind myself with my old child and teenage self. I felt like that 14-year-old girl again who had once been so excited to see a sett of badgers in her garden. That spring and summer of 2013 was spent going to my local woodland and learning about a whole array of invertebrates from butterflies to grasshoppers. I finally knew what my calling in life was to do, it was to work with wildlife and to share my knowledge of nature with others, through my writing.

By encountering nature, I discovered an inner personal connection with it and in return it gave me an inner peace, a focus. However, I do still have bad days with my anxiety, but they are less often than they once were and have reduced as result of going out into nature. I wanted to tell you this story not for pity but as a sign of hope in what can feel like a dark world at times, where the light seems distance. If you are going through anxiety at the moment, try to go outside even if it’s just the garden or walk with your dog to the park. I know from my own experience of anxiety, how difficult it can be to take that initial first step outside, but I can assure it will be okay. Immerse yourself in the wonder which is nature and who knows you too could experience the call of the wildness.

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Charity Titan Zip Wire Challenge – Part Three

Part Three

In the last edition of my blog, we had reached the point where we were waiting with mounting excitement to be called forward for our team’s turn.

Suddenly it was time to kit up and venture upwards.  We were given red overalls.  Mine seemed to have been made for someone twelve inches taller than myself, so I found I was wiping out my footprints as I walked.  We had hard hats and goggles.  Trying to fit the goggles over my glasses was a feat itself.  They pressed so hard, I had indentations around my eyes for hours afterwards.  But I was determined to see where I was going.

We left our supporters at the base of the third and final zip wire.  They would know we were coming from the reverberations of the wires.

Onto the bus to be taken way up to the first of the three wires.  It was freezing by now, but at least it had stopped raining.  We were told that this was the longest but slowest of the three.  We were strapped into our seats and connected to the wires.  All four bears were tucked snugly away.  Maude was with Steve, Cuddles with Jo, Murphy with me and Alf with Jess’s Auntie Sue.  All the staff wanted to know what the bears signified.

There we were poised behind the metal gate which would spring back to release us into the void.  The wait seemed interminable, but suddenly we heard ‘Three, two, one’ and we were off.  My immediate thought was ‘whoaaaaaaaa’, and I think I probably screamed it too.

Titan 7         DCIM110_VIRB

The wind was trying to turn me round, so I manipulated the straps as we had been told and soon I could see where I was going.  I could see the others.  Steve and Sue were already well ahead, with Jo and I bringing up the rear. It really did not seem to be that fast.  But thirty seconds later we hit the block at the end of the run and were hauled in to clear the wires.

All the others followed us down.  The bears welcoming everyone as they arrived.

We were all shouting to one another. ‘That was great’. ‘I want to do it again’. ‘What a great view’.  Not one of us wanted to stop there without doing the next two wires.  From here we had to walk to the next zip wire station.  I brought up the rear, wiping out everyone’s footprints with my overalls.

Wire number two was steeper and faster and was over the quarry.  Because you were so far from the ground it seemed much faster.  Just before we were strapped in, the sun came out.  The wet grey slate beneath now shone up at us.

Finally, we were at number three wire.  We were told this was the fastest.  We could see our supporters at the bottom.  They knew we were next down.  And away we went, the fearless Muskebears and their transporters.

This time we all had the confidence to let go of the straps and to wave as we went over the spectators.  Going faster, we hit the block with such force that I felt I was going to somersault over the wire.  We were all laughing like fools and wanting to go back up and do it again.

Jess and Ruby had been waiting for us and were both nearly frozen.  We all had so much adrenaline, we were not feeling the cold.  We handed back out kit and went for a hearty bowl of soup in the café.  While we were all thawing out, I went around with my recorder asking what people had thought of the experience.  With no exceptions, everyone had thoroughly enjoyed themselves and were thrilled they were raising money for good causes.

These were some of the comments:

 Meg and Tom thought it has been really cool and wanted to do it again.

 The views were breath-taking.

 The second wire was the most exhilarating.

 We need coffee to warm up now

 Fantastic.  I want to do Velocity now.

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 Totally awesome

 It was amazing.  I wanted to do it again straight away.

 Fantastic experience.

On the journey home, Steve and I discussed what we could do next.  We both want to do the Velocity Zip Wire, which is faster and longer than Titan.  We will even consider a tandem parachute jump, but only if they partner us with someone professional.  Be warned, we may be after you for sponsorship money again next year.

IDPD 2018

Treat the individual or change society? Disability as a social construct

Monday 3rd December 2018 is recognised as International Day of People with Disabilities. Thomas Vaughan from Autonomy has written this blog “Treat the individual or change society? Disability as a social construct”. Thomas works for Capgemini in Telford, and recently became co-chair of their UK Disability Network.

“3rd December has been designated as UN International Day of Persons with Disabilities since 1992. The theme for 2018 is ‘empowering persons with disabilities and ensuring inclusiveness and equality’. This is linked to the UN’s 2030 Agenda for Sustainable Development, acknowledging that disabled people, “as both beneficiaries and agents of change”, can play a key role in building a more inclusive world.

Historically, the medical model of disability has dominated mainstream thinking. According to this approach, the individual has an impairment which should be treated so that they fit into the world around them. Some disabled people identify with the medical model, as they seek treatments to cure their illness or ease their pain. However, others experience lifelong impairments which cannot be cured. Under the medical model, these people will always be unable to participate in daily life.

Another model is needed which doesn’t define individuals by what is ‘wrong’ with them, or suggest that some people must inevitably be excluded from society. This alternative approach accepts that medical cures are desirable for many, but recognises what all disabled people have in common – we inhabit a social environment which, in one way or another, is not designed to meet our needs.

The social model of disability has gained wider acceptance in recent years. It says that a person is not disabled by their impairment, but by barriers within society. These barriers can be physical/environmental, organisational or attitudinal. For example, steps at the entrance to a shop are a barrier in the physical environment which disables wheelchair users. A public body which only provides information in standard format documents is creating an organisational barrier. An employer who assumes that someone with a long term condition will take a lot of sick leave is imposing an attitudinal barrier.

“When a flower doesn’t bloom, you fix the environment in which it grows, not the flower” – Alexander Den Heijer

The social model shifts our focus away from treating the individual impairment, and onto what society can do to break down barriers. Sometimes the solutions appear obvious; ramps can be built and entrances widened to provide wheelchair access, while organisations can provide information in a range of accessible formats (eg. large print, easy read, braille). As a safety net, legislation is in place which gives disabled people protection from some of the worst inequalities.

Attitudinal barriers are much more challenging to overcome, and often contribute to the imposing of other barriers. Whether through ignorance or fear, no-one should be seen as incapable or treated like a second class citizen. However, disabled people generally do not want sympathy either, nor do we wish to receive special praise for performing everyday tasks. Even if well-intentioned, these attitudes can create an ‘us and them’ mentality which hinders our acceptance as equal human beings. The best way to overcome this is through familiarity; by living and working alongside us you will come to recognise our shared humanity, seeing the person rather than the impairment. You will learn to accept any support needs or ‘adjustments’ as a means of enabling each individual to express their personality and abilities.

 People who have disabilities are experts on the inequalities we face, so we are best placed to set the agenda and shape the key discussions around accessibility. By helping to break down environmental, organisational and attitudinal barriers, you will not only enable us to participate in everyday life, but also empower us to lead the development of a fully inclusive world”.

Please note these words are Thomas’ own thoughts and do not necessarily represent the views of his employer.

Shropshire Disability Network, thanks Thomas for sharing his thoughts with us.

 

 

 

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Charity Titan Zip Wire Challenge – Part Two

Part Two

You may remember that we were now one team member short, when Allan, my husband felt he could not face the heights.  Luckily, in his place, I was able to recruit a colleague from our local quiz team.  Steve was raring to go and volunteered to carry Maude.

October 6th, 2018, the big day, dawned wet, cold and miserable.  We had been checking the weather forecast all week and were not heartened by the impending rain.  At 0845 Steve and I were on the road.  With so many layers of clothing stashed in the boot, it looked as if we were going on a polar expedition.  We were asking ourselves if we’d made the wrong decision to get out of bed that morning.

A short detour into Shrewsbury ensured that we collected our supporter, Ruby (Chair of SDN).  We then settled in to the long journey to Blaenau Ffestiniog, where we would meet the other twenty mad individuals who were taking part.  The country around that part of the world is spectacular and the leaves turning red and gold enhanced the scenery.

We got to the centre far too early, so while we waited, we tried the local Welsh cakes with a pot of tea.  My mother used to make great Welsh cakes, but I think fear and trepidation heightened our taste buds that day.  They were gorgeous.

When everyone had arrived, we took lots of photos.  I had brought my digital recorder to ask people why they were doing the challenge before they set out, and to record comments afterwards.  The overwhelming sentiment was one of love for Jess and a desire to help her chosen charities.

                                     Titan Group

The following are some of the comments I recorded.

  • Vicky from Redditch is a Guide Dog Volunteer.  She was at the event to support Jo and Jess.  She had Oreo, a Guide Dog Puppy-in-training.
  • Tina met Jess a few months ago through Guide Dogs.  When she heard Jess was organising the event, she volunteered immediately.  Tina was looking forward to doing the zip-wire.
  • Alan, Jo’s husband was looking forward to the event.  “It should be a laugh, if nothing else”, he said.  He felt sure he would want to do it again.
  • Ruby, Chair of SDN was supporting Jess’s Gang.  She was not able to do it herself but was there for the whole team.  She said we were all brave people and that the charities appreciated what was being done today.
  • Megan from Ironbridge Bookshop was with her other half, Tom, who was a little bit scared, but was looking forward to the view.  They both wanted to do something for Jess and Jo.
  • Kevin was looking forward to the excitement.
  • Megan was hoping she could keep her eyes open during the descent.
  • John was doing it because his wife made him do it.

So, there we all were – keen to start but needing to wait until our time slot.  We paced around and took more photos.  We all knew we couldn’t back out now and everyone was encouraging everyone else.

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Join us for part 3 of this blog to find out what the Zip Wire Challenge was like.

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Foetal Alcohol Spectrum Disorder (FASD) by Beth Harrison

Shropshire Disability Network has seen an increasing number of parents contacting them in relation to Foetal Alcohol Spectrum Disorder which sadly seems to be escalating.

What is Foetal Alcohol Spectrum Disorder (FASD)?

Foetal Alcohol Spectrum Disorder (FASD) is a term used to describe impacts on the brain and body of children exposed to significant amounts of alcohol during pregnancy.  FASD is a lifelong disability caused by brain damage and can affect: cognition, learning, physical health, behaviour and social ability.  

FASD includes the following:

  • Foetal Alcohol Syndrome, FAS
  • Partial Foetal Alcohol Syndrome, PFAS
  • Alcohol Related Neuro-developmental Disorder, ARND
  • Alcohol Related Birth Defects, ARBD

The Research

Research suggests that at least 7,000 babies are born every year in the UK with FASD.  These numbers are higher than the combined number of children born in each year with Down’s syndrome, cerebral palsy, cystic fibrosis and spina bifida. Moreover, over 70% of children with FASD have been fostered, adopted or in some way involved in the care system.  

Often children are arriving with new families without a diagnosis of FASD. FASD is notorious for going undiagnosed, or being misdiagnosed, for example as autism or ADHD, or attachment disorders and this can lead to misunderstandings about the care and support they require. FASD is frequently termed an ‘invisible disability’ because to someone who does not know the child, they may not appear to have additional needs based on outward appearance.

How does it affect children?

These children can experience numerous challenges to include, but not limited to:

  • Behavioural issues to include issues with attention, concentration and hyperactivity
  • Have a tendency towards untruths
  • Can become fixated and obsessional about things
  • Struggle to plan, organise and follow instructions
  • Inability to learn from mistakes
  • Academic issues (particularly with maths)
  • Memory issues (particularly short term)
  • Difficulties in social situations, socially immature, inappropriate and lack of social awareness
  • Visual, hearing and sensory impairments
  • Difficulties regulating emotions
  • Physically – growth restriction and facial features

Preventing FASD

It is hoped that most birth mothers do not intentionally set out to harm their unborn child. Many women who drink alcohol during pregnancy, and excessively so, may not have understand the consequences of doing so or, may not have indeed known they were pregnant at the time of doing so.

However, in a society where drinking alcohol is on the rise and the NHS struggles to deal with alcohol related illnesses, the recommendation now from the UK Chief Medical Officer is that no alcohol be consumed in pregnancy and when planning a pregnancy. FASD is only preventable when there has been no prenatal alcohol exposure.

The Future

As a parent of a child with FASD you are going to have your ups and downs, periods of worry, difficulty and undoubtedly exhaustion. So firstly, make sure you get support for yourself and remember the importance of taking a break occasionally. However, the most important thing to remember is that your child will have skills, strengths and talents. They may not develop these at the same rate as their peers, but they can and will achieve.

Many children with FASD are creative, particularly with art and music. Their vivid imaginations and love for fantasy can make them great story-tellers! They are often very caring, loving and friendly children who embrace affection.  They tend to be good with children who are younger than them. They are often good with animals, showing specific skills in this area. They can also be very athletic and good practically with things such as woodwork and car mechanics.

Support

The lasting thing to remember is that you are not alone. There are many other parents in the same position as you are.

There are local support groups that you can use, some of which are accessible on social media such as Facebook and Twitter.

There is also the National Organisation for Foetal Alcohol Syndrome UK (NOFAS-UK) which is a registered Charity. It provides information on FASD, links families where possible, runs family activity days, conferences and training sessions, has a library of resources and publishes a regular newsletter. The NOFAS-UK website which is a great starting point for information, support and signposting.  www.nofas-uk.org

The FASD UK Alliance is a coalition of groups and individuals across the UK who are united together for positive social change for those affected by FASD. Their website https://fasd-uk.net can point you toward support groups – including the FASD UK Facebook Support Group which provides daily support and insight.

You can also access the UK-EU Birth Mothers Network on www.eurobmsn.org

The Samaritans are also always at the end of the phone – 116 123.

Two books that you may also find useful are:

  1. ‘Foetal Alcohol Spectrum Disorders: Parenting a Child with an Invisible Disability’ by Mary Mather and Julia Brown (2014)
  1. ‘Understanding Foetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals (JKP Essentials)’ by Maria Catterick and Liam Curran (2014).
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Charity Titan Zip Wire Challenge, October 2018 by Ann Shaw, Secretary SDN

Titan Zip Wire Blog

Part One

My friend Jess is a very brave person.  She continually pushes the boundaries of what people believe a person living with disabilities can achieve.  She has published 3 books with her mum, Jo.  She has won a gold medal for playing Boccia in the Special Olympics, despite only taking up the sport recently.

Each year she raises money for charity by challenging her mum to take part in something that takes Jo out of her comfort zone.  Last year it was abseiling down the MK Dons’ stadium in Milton Keynes.

I had no idea that I would be so closely involved with this year’s challenge – the Titan Zip Wire Challenge in North Wales.  Jess wanted to raise £1500 to be shared equally between Guide Dogs (for whom she volunteers), Macintyre (they provide care for Jess) and Shropshire Disability Network (SDN).

Jess was bitterly disappointed to learn that she would not be able to take part on the day.  The organisers have strict medical guidelines, and, because of Jess’s eye problem, she found out she would be excluded.  This was where I came in.

Back in February, I think I must have been feeling particularly rash.  When Jo mentioned a zip wire event in October, I signed up straight away.  I also signed my husband Allan up.  If I was doing it, so could he.  At least that was what I thought.

Jess and I both have a ‘thing’ about teddy bears.  Cuddles is her constant companion and my house bears are Murphy and Alf.  They became our mascots – the Three Muskebears.  The idea was that they would take part in the zip wire, tucked down our overalls.

If any of you have seen the video on the Titan Zip Wire website, you will know that participants take part in groups of four.  The search was on for a fourth brave bear.  Maude was found lurking in a charity shop.  She had the sort of face that said, ‘pick me’.  So, I did.

 We decided quite early on that the mascots would wear the colours of each charity – purple for Macintyre, Blue for Guide Dogs, Pink for SDN and orange for Safe Places (part of SDN).  Luckily, I can turn my hand to most things.  I made the t-shirts that the bears would wear on the day.  They all looked very smart.

The following seven months came and went, and, to be honest, I didn’t really think too much about what we were doing in October.  Suddenly, I realised the day was nearly here and I had done nothing to raise any sponsorship money for the three charities.  I soon put that right and was amazed at the generosity of my friends and colleagues.  I’m sure many of them just wanted to see me throw myself down Snowdon.

Two weeks before the big day, Allan backed out.  His fear of heights was too much for him.  He thought that I, too, would chicken out when I was presented with the zip wire.  What would happen next?

 Look out for part 2 of this blog to find out whether I made it.

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Enter if you dare!

How would you react if you received an invitation to enter a Dragons Den?  Would you accept or decline such an offer? When the invite dropped into our Chair’s inbox, all sorts of things entered her head. Would it be a fire spewing serpent or reptile or some monster? Would she get out alive or manage to escape unscathed? Reading further, Ruby discovered it would be similar to the TV programme but the invitation was to “pitch” to some friendly dragons.

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The invite came via Shropshire Providers Consortium (SPC).  The aim, to connect businesses for social good, providing a link between industry and voluntary and community enterprises (VCSE) in Shropshire. The Dragons’ Den style charity event would enable local businesses to support community organisations to benefit Shropshire communities and people.

For businesses this is a great way to not only demonstrate corporate social responsibility (CRS) but to create PR and interesting news, connect like-minded people and develop mutually beneficial relationships with community organisations.

The plan was for each VCSE organisation to have a maximum of 10 minutes to pitch to the business judging panel.  Once all of the pitches had been made, the businesses would decide which organisations to support. 

How has Shropshire Disability Network benefited?

After the first “pitch” in Shrewsbury, resulting in a “score” not by a dragon but by another “pitcher” who offered storage for SDN equipment, Ruby dared to enter another den, which was held at The British Ironwork Centre, Oswestry. This has resulted in two way support by one of the friendly dragons.

What does SDN working in partnership with The British Ironwork Centre mean?

Clive Knowles, Owner/Managing Director, was very keen to meet with Ruby, to talk and give support to SDN. But Dragons Den was never meant to be “one way”.  So, SDN are supporting The British Ironwork Centre by using and sharing our knowledge and skills around disability issues to make this 5-star attraction even better.

So far:

  • SDN has benefited from a generous donation.
  • The British Ironwork Centre has a link on our website.
  • SDN will be supporting the submitted application by the British Ironwork Centre to Shropshire Council to get the new toilet block completed and open so that it will not be necessary to bring in extra porta loos for the busy seasons.
  • We are making suggestions i.e. to have a “Stoma Friendly Toilet” as well as tweaking some signage and ideas re prevention of trip hazards.
  • SDN will continue to make visits to look at maintaining and expanding upon this “disabled friendly” local attraction. We will introducing an award scheme that we will use for places like The British Ironwork Centre (certificates of bronze, silver, gold and platinum).  When we are invited to engage, we can give awards depending on how we rate them for disability facilities.
  • The British Ironwork Centre is now part of Safe Place Shropshire. They have a supply of “I need help cards”.
  • SDN has made suggestions on having some aids available that visitors can lone while visiting and are supporting on this.
  • The British Ironwork Centre have requested 2 SDN collecting tins, so that they can support our work. They also have SDN leaflets.

SDN are very pleased to have “dared to enter” and accepting the invitation to take part in the Dragons Den style events. By taking part in the Shrewsbury event, it was like a practice run for the second one. As Ruby said when reporting to the Management Committee “There were pluses from Shrewsbury i.e. storage space”.

We are so grateful to Shropshire Youth Association for assisting us with storage as it had become a real issue for our charity. Plus, by “daring to enter” it highlighted that we need to educate and raise more awareness of our work, as some dragon feedback showed a need to understand how SDN charity works.

By working in partnership with The British Ironwork Centre we feel this has been a great outcome from the Dragons’ Den style event and we know that Clive and the staff at the British Ironwork Centre feel the same.

Watch this space for updates of how our partnership working develops.