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Category Archives: Postural care

How a tweet can end with a flight to Gaza

19 Sep 2018

Ornately draped curtains hung around the room blocking out the midday sun. Sioned stood teaching. It was all so familiar; a room full of delegates, PowerPoint presentation, projector and screen. The humid room though, was a tell-tale sign that behind the green curtains lay the bustling hubbub of Gaza rather than the green fields of North Wales

From Chester to Gaza

Usually on a Wednesday morning Sioned Davies would be working as a paediatric physiotherapist in the Countess of Chester hospital seeing a range of children with neurological disabilities. Then one impulsive tweet and series of emails later she found herself using annual leave to jump on a plane to Gaza rather than a sunny beach in Spain. Alongside Colin, a Paediatric Physiotherapist from Addenbrookes Hospital in Cambridge, Sioned flew with the charity Medical Aid for Palestinians (MAP) to shadow practitioners at work and provide a three-day training course for paediatric physiotherapists focusing on spasticity and postural care management.

The Goldsmith Indices

Readied with a The Goldsmith Indices measuring equipment and wealth of knowledge, the three-day course was crammed full of evidence based practice which the therapists could use directly in their public and privately funded clinics. When asked what incident will stick with her from the trip, Sioned told of a four-year-old girl she meet in ITU who had been on a ventilator for ten months. Despite high tech, specialised care keeping the preschooler alive, it was obvious to Sioned that the lack of postural care was contributing to her hips slowly dislocating whilst in hospital.

It was a stark indicator of some of the dramatic differences with practice in Gaza and the UK. Although therapists undergo a comprehensive four-year training course to qualify as a physio, post graduate training is minimal. With very little structure and accountability, specialties within practice rarely develop and there is little drive for continuing professional development or evidence based practice. Add to this the lack of specialist equipment and antispasmodic medications, and what results is predominantly poor postural care management.

Standardised care

Back at home in the specialist school she works, Sioned has seen positive change in the prevention of deformities and maximizing function in the children she cares for. Through staff training, postural care has become an integral part of the school day. The improvements in children’s posture has then been proven using the Goldsmith Indices as an annual outcome measurement. Where previously they had depended on unreliable x-rays and photographic pictures to monitor postural changes, the Goldsmith Index has allowed care to be standardised, providing reliable measurements of postural alignment.

 

In Gaza, therapists were so grateful for the knowledge Sioned and Colin shared. Quickly they could see how postural management not only impacted function and movement for mobile children but also when thinking about chest physio and the respiratory system. Every aspect of a person’s quality of life can be impacted positively by good postural care management. With the intensive training provided, therapists were inspired to take a leading role in postural assessments. Encouraging them to acknowledge small postural changes which have the potential to prevent deformities. It is a big mind shift for practitioners and families who are used to ‘treating’ patients for a short episode of care before allowing child to return to ‘normal life’.

Painful and life-limiting contractors accepted as inevitable

Before the training by MAP, therapists accepted painful and life-limiting deformities as an inevitable consequence for those with neurological disabilities or limited movement. A reality witnessed by Sioned who noticed a higher prevalence of excruciating and limiting contractures compared to the UK. One young six-year-old, who participated in the case study aspect of the training, had to be lifted everywhere by his family. With incredibly high tone, no wheelchair, no walker, no splints, no baclofen, his quality of life was dramatically reduced. Sioned reflected,

“We take it for granted. Baclofen, splints and the equipment we have available. The impact on the family was incredible, having to carry their 6-year-old every single day.”

The frustration of not being able to provide highly specialised equipment and medications was eased when it came to night-time postural care. Having never seen any kind of sleep system before, the therapists finished their course inspired and equipped with the necessary principles of care needed to help families. Using locally sourced or improvised equipment, therapists can now provide the essential nighttime support children need to help prevent body shaped distortion in a gentle and humane way. It is an achievable goal with the life-changing potential to reduce pain, maximise function and improve quality of life

What next?

Now back home, Sioned is already dreaming of her next trip to Gaza. It is hoped with the necessary funding, MAP will be able to broaden the work they have started. Together they dream of further equipping therapists with the knowledge, skills and equipment. In particular, they hope to begin to engage families in their vital role in providing 24-hour postural care. For Sioned it is a seemingly small but very strong step forward in a long and worthwhile journey in improving the lives of children two and a half thousand miles from her rural home in Wales.

Simple Stuff Works 10th Birthday

10 Jul 2018

2008 was epic

Usain Bolt broke the 100m world record at the Beijing Olympics, the world banking markets crashed and Barak Obama was elected President of the United States of America. It was a pivotal year in global history not least because Simple Stuff Works was born.

Ten years ago, in a town not far away, a family passionate about postural care resolved to work together to positively change the lives of people around the world. Focusing on humane and comfortable products, training and person-centred care, Simple Stuff Works Associates brought together decades of knowledge, experience and resources to take a stand against unnecessary destructive changes in body shape.

Simple Stuff Works 10th Birthday 

This summer, Simple Stuff Works celebrated its 10th Birthday in the same way it tackles everything else, with its family values at its core. Simple Stuff Works is proud to be a family business focused on improving the lives of families whose loved ones have limited movement. Family life is important to us and we know it is important to the people we support. It may be an aged loved one whose final years should be comfortable and rewarding, or protecting the body shape of an infant too young to know what the future might hold, or even a teenager with physical disabilities who, like everyone else, wants to make the most of their life. Each person is surrounded by families and carers who want the best for them, and so do we.

“Simple Stuff Works dreams of a worldwide end to body shape distortion through accredited training and comfortable, gentle products.”

Our birthday celebrations were met by the perfect summer afternoon. The sun was shining, the bunting hung and an ambitious water slide erected in the family garden. The scene was set for a fitting celebration.

The Simple Stuff Works ‘Goldsmith Grandparents’ hosted the day

Grandpa Goldsmith John Goldsmith is a passionate and hard-working man who has dedicated his life to creating incredible solutions to support individuals with complex healthcare needs. John is an animated man whose brain is always working towards the next new, inventive piece of equipment that might improve people’s lives.

Granny GoldsmithLiz Goldsmith has been a physiotherapist for 50 years, graduating in 1968. Her dedication to the people she supports has seen her develop the world’s first tool to measure body shape and body symmetry. She is determined to raise standards and ensure future generations don’t have to suffer the consequences of body shape distortion.

Fueled by both their parents’ passion and own personal experience of disability, Anna Waugh MD (left) and Sarah Clayton CEO (right) set up Simple Stuff Works Associates to continue to spread the word about body shape distortion. They wanted to create simple, affordable postural care solutions whilst inspiring families and healthcare professionals that they have the power to make a difference.

Simple Stuff Works Associates is a family run business and we wouldn’t be anywhere without the support of our wonderful family including our sisters Polly and Julie.

Polly’s husband, Russ, was a member of our team for a number of years before his death in 2016. Part of our passion for the work we do is to ensure that his hard work and legacy is never forgotten.

From our family to yours, thank you for being part of our journey.

Here’s to you, Simple Stuff Works Associates and the next 10 years.

The only way is UP

12 Jan 2018

Looking into our crystal ball, you’ve had a 6-week cough, shares in Kleenex have rocketed solely based on your nasal secretions, you can’t remember when you last saw the sun and you’re broke.

It must be January.

January is dark, grey, cold and everyone is counting the days until payday.

So, the only way is UP, right?

It’s a new year. Time for starting afresh.

Around the Simple Stuff Works office, we have made some pretty significant New Year’s resolutions to mark this momentous occasion.  As ever our CEO and pioneering leader, Sarah, is showing us all how it’s done by committing to no longer wear maternity nighties. A lofty aspiration, you will agree. Rumour has it this has been attempted before but her resolve has been broken after only a few days. This year more drastic measures have been employed and the said maternity attire has been permanently removed.

So, if you see this woman, guiltily loitering in the maternity section of your local department store, please help her to help herself and not let her buy any more oversized – but oh so soft – nightwear.

Your help is appreciated.

But it doesn’t end there. Not only are we transforming our lives, the office has had a clear out too. We now have a collective skip in our step as we embark on a new and exciting year. We can’t contain our excitement over our brand-new product, our growing international connections and seeing the life changing impact good postural care can have on the whole family.

At Simple Stuff Works we know that for many of our family’s a new year can bring foreboding and anxious expectation. The family’s we work with often face an uncertain future.

They anticipate challenges in the health of their loved ones.

They expect to have to fight for care and provisions.

And often they may feel overwhelmed and under supported.

But, they have an extraordinary resilience that marks them as a remarkable community that we at Simple Stuff Works feel privileged to serve.

But the political landscape is uncertain for the families we support. With increasing cuts in social care, health and education, the squeeze is felt strongest by the vulnerable. But thanks to a fantastic coalition of charities the Disabled Children’s Partnership is championing the needs of families by highlighting the #SecretLifeofUs.

It is reported that most of the population are not aware of the challenges faced by those caring for someone with complex needs. Sharing the Secret Life of Us, it is hoped, brings awareness and with awareness, understanding. And when the public understand the reality for families, they will support the Disabled Children’s Partnership in fighting to make a real difference in giving families access to the services they are entitled to, when they need them the most.

And at Simple Stuff Works we are pioneering for change too.

In 2018, we are launching the first evolution in postural care for a decade. To secure one of our limited early access demonstration slots please email us or call the office.

We hope the APS system will show everyone our dedication, not only to caring for the needs of those with limited movement, but also  to prioritising the needs of their carers too.

Because at Simple Stuff Works we know that good postural care isn’t simply reliant on well trained professionals or specialist equipment, but it is founded on the families and carers supporting their loved ones 24 hours a day, 7 days a week and 365 days a year.

That is why we get up, when it’s still dark, get dressed, out of our non-maternity PJ’s, and face a new day. Because we want to continue to shine the light on postural care and the difference it can make on a person’s quality of life.

This January we are going to stoke our postural care lanterns brighter than ever, shining a light in all the dark places as we keep on keeping on.

Because…it must be spring soon.

What challenges are you facing in 2018?

What are your dreams for the year ahead?

Join in the conversation on Facebook and Twitter.

Growing old and living well.

17 Oct 2017

Everyone is getting old!

Dawn French is 60.

The Queen is 91.

Maculay Culkin is 37.

And today, you could be arrested by someone born the same year Wannabe was released by the Spice Girls.

We’re all ageing.

In the UK today, there are over 11.8 million people aged over 65 with 1.6 million over 85 years old. The predictions are that by 2040 nearly a quarter of the population will be over 65. It seems we are living longer and with that comes the potential for increasing health needs.

In our recent animation we celebrated the International Day of Older People.

On the 1st October 2017 the United Nations theme was Stepping into the Future: Tapping the Talents, Contributions and Participation of Older Persons in Society.

The UN’s aim was to explore the participation of older persons in various aspects of social, cultural, economic and political life. In our short animation, we followed the lives of Max and Phyllis.

In 1955, Phyllis is a 19-year-old art student with a flair for dancing at the weekends. It is also the year baby Max is born, who grows into a young man with a passion for football.

With the blink of an eye, Phyllis glides through being knee deep in children and her thirties, to find herself in her fifties. Her children have grown and flown the nest, leaving her teaching at the local art college and still dancing at the weekends with her husband.

When Max becomes a father, his footballing dreams are lived out through his daughter who plays for his favourite premiership club. Yet his favourite place remains the football pitch where now he spends his time shouting from the side-lines.

After tragedy hits the lives of Max and Phyllis, they both find themselves in need of twenty-four-hour care.

Because we love happy endings at Simple Stuff Works, Phyllis and Max receive excellent support in hospital and a residential home. Phyllis is assessed and sits every day in a good chair.

A chair not too shallow, too wide, too deep, too short or too high.

Like Goldilock’s chair, it is just right.

And after years away from painting, Phyllis picks up her brushes again and finds a long-lost part of herself. Having the right postural care support means she can create and participate. She can contribute to her local environment and be who she is.

For Max, a long period of rehabilitation follows a stroke. But thankfully, medical staff know that his sleep position affects his ability to sit and be active. So, with help from the multi-disciplinary team, Max’s night time positioning is comfortable, symmetrical and safe.

And for Max, having high care needs, does not stop him from showing up at the football pitch to coach the local girls’ team. Because with imagination and dedicated team work, every person can be who they are, contribute to society and live a life that reflects their own story with their unique skills.

The story of Phyllis and Max is fictional, but here at Simple Stuff Works we know many Phyllis and Max’s whose lives are transformed with good postural care. That is why we are so passionate about what we do.

Real life Phyllis’s get to continue their hobbies because of good seating.

Real life Max’s get to participate in their community because of a good sleep system.

In the coming months, we hope to share some of these stories with you. Tales of real people and real lives that have been touched and changed by Simple Stuff Sleep Systems and good 24-hour postural care.

Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.

 

 

A-Z Guide to a British Summer (especially for complex families)

16 Aug 2017

We are half way through the school summer holidays and it feels as though we have had approximately 3.4 days of sun. For those parents counting down – stay strong, you’re now closer to the end than the beginning. If you’re loving it; three weeks left – make it count.

Either way to brighten your day, here is a Simple Stuff Works A-Z guide to a British Summer (especially for those with complex needs).

Accessibility

Days out aren’t planned simply with fun and entertainment value in mind, accessibility and inclusion are just as important in the holidays as term-time.

Bed-in-a-bag

The Simple Stuff Works Bed-in-a-Bag is fantastic for going on holiday. It also has the added bonus of being particularly useful on a sun-bed. For information or a quote email admin@simplestuffworks.co.uk or call 01827 307 870

Changing places

Without these vital facilities, many families find themselves limited or laying their loved ones on a dirty toilet floor to be changed. You can show your support to the campaign here.

Dancing

Mostly in the rain.

Equipment

Simple Stuff Works equipment is award winning, silent, gentle and for all ages. We are passionate about posture and improving lives.

Flying kites

John is captured in this moving video flying a kite and sharing his powerful poem about the ‘Impossible gift of sleep.

Click here to watch it.

“My twisted body
gnarled and tired like an old vine
simply cries enough
A child locked in with no speech
implores our realignment
Hugging me like an old friend always there
Relieves discomfort and pain
Simple Stuff just works

My psyche now free from struggle with my body
Simply clears and calms resting and peaceful sleep
Impossible gift now mine.”

Gravity

Gravity doesn’t go on holiday.

At Simple Stuff Works we know that the 24-hour postural care provided by families and carers continues, in every season and everywhere.

Have wheelchair will travel

Have wheelchair will travel is a great resource full of advice and support for those adventurers on wheels. Check it out here.

Ice-cream

It’s the summer.

You have to eat ice-cream.

And if you are wearing three layers of clothing, with Goosebumps prickling your legs and rain streaking across your face, well that just makes it even more authentic.

Jam

Traffic – not strawberry. Unless you’re on the A12 by Tiptree, and then you might just get to experience both.

Kids to Adultz Scotland

On 14th September Fast Aid, the Simple Stuff Works distributor, will be setting up shop at Kidz to Adultz Scotland and blowing the trumpet of changing lives with kind and gentle postural care. So, if you’re north of the border come and check it out.

Location, location, location

We’re not talking Kirsty or Phil here, but the reality that going on holiday is often more challenging.

For many families, it is the same issues, in a different (often less equipped) place. It is frequently a change of location rather than rest. That doesn’t stop it being fun or wonderful, it simply means the hard work continues.

Memories

As well as the busyness, chaos and exhaustion, families create memories at this time of year. Taking time out of the routine to do something extraordinary. These precious moments of time may be captured on a selfie or simply tucked away in our memory for a later date. Either way, they are like precious treasured jewels ready to be re-lived and enjoyed in the future.

Number 24

Check out this short animation about the unexpected lives of those living at Number 24.

Objective measurements

Here at Simple Stuff Works, we recognise that as well as a specialist clinical eye, objective measurements are important in assessing in body symmetry and the effectiveness of postural care. That is why we advocate and train professionals in Goldsmith Indices. Click here to check out our training in Body Symmetry and other on-line courses.

Packing

It takes longer to pack the kit, caboodle and specialist equipment than the actual holiday itself.

And for families of loved ones with complex needs, the chances are, if you forget something, it can’t be bought in Boots on the way (other pharmacies are available).

Quiet

Hahaha!

There’s none of that.

Rain

The bell tolls at the end of the summer term and the storm clouds slowly sweep across the bright blue sky. Rain starts the day schools breaks up but coming the beginning of September and we’ll all get to revel in the late Indian Summer.

Sun

Occasionally – in short bursts.

And as soon as that bright orange orb hits the blue sky it becomes fashionable for men of every shape and size to have their T-shirt tucked in their back pocket rather than covering their chest.

Temperatures rise (occasionally)

At Simple Stuff Works we know the importance of regulating body temperature day and night. So our sleep systems are especially designed to help the body regulate its temperature every season of the year.

Uniform

‘Back to School’ signs littering the High Street herald the need for a shiny new uniform. Then by the end of August, parents are separated into two camps. There are those who lovingly sew a name label into every item of uniform or a permanent marker gets dug out of the drawer the night before school starts.

Vacation

Are you going on a vacation or trip?

If you aren’t sure then check out this great blog that will help you work out the important difference

World Para Athletics

Usain Bolt limped off the track.

Mo fought hard for a Gold then Silver.

While the 4x100m Men stormed home for GOLD.

But it doesn’t stop there. The World Para Athletics started on 14th August. It promises to be an inspiring ten days of beating the odds, overcoming adversity and challenging perceptions.

X-rays, therapies and appointments

These don’t stop just because it’s August. For adults and children with complex needs, everything continues, even though kids aren’t at school.

Youtube

Now you’re stuck in doors with hail pelting the window, you may as well check out our Youtube channel packed with helpful guides and animations (including the Simple Stuff Works Super Hero – Myth Buster)

Zzzzzz

Sleep is the coveted goal of every parent, carer and person who benefits from twenty-four-hour postural care. Simple Stuff advisors are trained and ready to help, just give us a call.

 

Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.

A new Superhero with unbelievable powers

17 Jul 2017

Behind the doors of Simple Stuff Works lies a deep, dark secret.

But the truth will out.

A short and brilliant animation by Simple Stuff Works may give us a glimpse of the secret life of Simple Stuff Works. In it we are introduced to a new kind of Superhero, Myth Buster.   

It seems the Simple Stuff Works cover is finally blown.

Traditionally, Superheroes are defined by their super powers.

Superhero

Super Powers

Superman Strength, flying, seeing through walls, has a really strong blow!
Spider man Can shoot webs from wrists, climb up walls
Incredible Hulk Turns big and green when angry and becomes incredibly strong
Cat woman Wears super tight shining black jump suit
Batman Very rich and has lots of gadgets

Myth Buster, however, has the long-awaited ability of…

Understanding the complexities of postural care

Myth Buster Video

The animation begins by challenging the idea that all those with a disability are not always in a wheelchair. In fact, disabilities can take all shapes and sizes. People with disabilities aren’t all depressed or need congratulated for getting out the house. And, it is pointed out, being disabled doesn’t instantly make you inspirational.

Then, in Myth Buster’s pursuit of postural care excellence, he Kepows and Booms his way through four postural care myths that can be barriers to quality provision.

1) Postural care isn’t just for children.

Anyone who has limited movement, at any age, with a variety of conditions can benefit from postural care.

2) Postural care isn’t in competition with surgery, pressure area care and freedom of movement.

They can all work together for the benefit of a person as they journey towards maintaining a good body shape.

3) HealthCare professionals, Simple Stuff Works advisors and other dedicated equipment providers never say one size fits all.

The focus isn’t on the product but rather on the person being cared for; their needs, desires and aspirations.

4) Body shape changes are preventable but postural care is a marathon, not a quick fix.

Quality postural care has many components and many barriers. Both professionals, carers and families benefit from accredited postural care training. Partnership with the families, practitioners and multidisciplinary team bring about the best results. Objective measurements of body shape changes and bespoke equipment that suits the needs of an individual is the corner stone of postural care that improves a person’s quality of life.

But it seems, the greatest power Myth Buster has is the ability to morph into many forms.

For excellence in postural care requires an army of Superheroes. It isn’t simply down to good equipment and informed professionals. It requires hard work and determination from those still caring at 2 o’clock in the morning.

Most importantly it needs engagement and persistence from the most important person – the one in the centre of it all. The person living the life that is immeasurably improved by minimising body shape changes.

But big questions still remain.

Like, why is the Simple Stuff Works office window always open?

How come you never see Anna Waugh and Myth Buster in the same room as each other?

And why do the Simple Stuff Works order so much Lycra?

Maybe, we’ll never know…

Simple isn’t the same as Easy

17 May 2017

The simplest way to get fifty on a dart board is by hitting the bullseye, but it isn’t easy.

Simple Stuff Works prides itself on offering uncomplicated solutions to prevent and correct body distortion. For those with limited mobility, postural care is a twenty-four-hour occupation. Seven days a week. Three hundred and sixty-five days a year. So, the solutions need to be simple.

At Simple Stuff Works we understand that simple isn’t the same as easy

It’s simple that your two-year-old needs to brush their teeth – but it isn’t always easy to get them to do it.

It’s simple that if you eat that large pizza you’ll put on weight – but it isn’t easy not eating it (especially ifyou are in our office on a Friday afternoon).

It’s simple that going for a jog will improve your mental and physical health but, where did I put my trainers?

Here at Simple Stuff Works we help families work out how to make the simple easier

Within our popular Train the Trainer course, we help practitioners understand the many factors that affect implementing night-time postural care. Sleep is a very personal and individual experience. We all sleep in different positions and have different preferences.

The foundation of every sane household is sleep

Sleep deprivation is an implement of torture still in use today – just ask any new parent. For families of those with complex needs, sleep is often as priceless as gold and rare as a four-leaf clover. We understand this, and we want our sleep systems to promote sleep and well-being in the lives of the whole family.

A person that doesn’t sleep can’t concentrate to learn and is more likely to suffer health problems. A parent that doesn’t sleep is prone to weep, shout and need coffee to sustain them through the day. A good sleep system helps a person to sleep, giving the whole home much needed rest.

When you call us to come and assess a person’s needs, our advisors pride themselves at looking at the whole picture. We are passionate about person-centred care and that is why it is important we come to your home. We are committed to finding solutions that overcome an individual’s unique difficulties and providing solutions tailored to their needs. Often the solution is not a quick fix, but requires time, partnership and creativity.

Good postural care is a process

No piece of equipment is good enough to meet everyone’s needs.  Even though our multi-plane stabiliser is flying off the shelves, we won’t ever send out a piece of equipment that we aren’t confident suits the needs of the person using it. Our advisors are not paid commission and have no financial incentive to recommend equipment. Their primary concern is serving you well.

Sometimes a solution will require incremental steps. At Simple Stuff Works we recognise and celebrate the individuality of our clients and recognise their need for bespoke solutions. With families and care agencies, we want to guide you through the process of assessing where you are at where you want to be.

Postural care is our passion. Protecting body shape for the most vulnerable is our expertise.

We know that life is complicated for many of our families and we are determined to make our simple solutions as easy as possible.

Do you need advice on postural care?

Are you concerned your family member needs extra support?

Have you noticed changes in body shape?

Please call our advisors on 01827 307870 and we will be more than happy to help.

The unanswered questions and simple answers

10 Apr 2017

When a child is first diagnosed with a complex medical condition or disability, a tidal wave of unanswered questions sweep through life.

For me it was as though, one minute I lived in a town that I recognised, one I had lived in my whole life. A town with familiar faces, understandable street names and identifiable buildings. Then the next minute I was thrust into a new environment. A place where the landmarks were unfamiliar, the people dressed differently and spoke another language.

Soon my brain is whirring with long words that I couldn’t pronounce, never mind spell. And in every new conversation with medical teams more words and new advice were hurled across to my side of the table.

And all this time I had my own unanswered questions

Why did this happen?

Who is to blame?

What went wrong?

Why my son?

Why me?

Why now?

What could I have done differently?

For many parents, these questions that will never be answered, they simply sit in our lap taking up space and energy. It can be tiring carrying around unanswered questions and can make it even harder to engage in conversations with doctors and therapists.

Because in this new town, a parent can be speaking one language and the therapists another. The parent wants to know why it happened, while the therapist wants to instruct what can be done. A parent is desperate to know what the future might look like but all the therapist can do is tell of things that might make a difference – to an unknown future.

Parents instinctively do all you can for a child – everything.

We try every new-fangled therapy, medication and specialist piece of equipment. Anything that will make a difference because we want to make it better – we want to fix it.

But before long there is saturation point or at least exhaustion. It isn’t possible to do everything we’ve been advised to do. We only have two hands and twenty-four hours in the day, and we still have to eat and go to the toilet.

It is even harder to be motivated when we feel worn down by unanswered questions.

At every appointment,  there is hope that we might be relieved from the weight of one question. Just one ‘why?’ that we can lay to rest, but it rarely comes. Instead I’m given even more suggestions, more advice and it can feel overwhelming.

Sometimes I reminisce of the days back in my old town, where life seemed more simple, easier to understand and I long to go back.

But then a day comes when a therapist instructs me of a therapy that makes sense. Something I feel is achievable. I’m given a reason to do it and it’s a reason that I understand…

Because the future is not yet written

I realise along with the unanswered questions is an unwritten future. One that, as a parent, I can influence. Click on this short animation to see the simple and profound ways postural care can impact the life of a child with complex disabilities; his life and his future.

There are so many unanswered questions that remain. But like it says at the end of the film;

‘I take the advice I’m given, along with the challenges of real life and do the best I can. Because as a parent I can make a difference to my child’s quality of life and future.’

Rachel is a nurse, writer and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading parent workshops as well as training professionals.