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Category Archives: Disability

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.

The Unexpected: Halloween, fireworks and No. 24

01 Nov 2017

It is the season of the unexpected.

Last night, Halloween brought a host of unexpected guests to our front door. It was an opportunity to meet neighbours we don’t normally speak to under the guise of passing on tooth decay to the next generation. Pots of treats sat in the porch ready to be dished out, hoping to warn off any unwanted tricks. It’s the one time of year we encourage children to knock on a stranger’s door and take sweets from them.

By the end of the week, small cardboard packages will turn into unexpected displays of light against a dark sky. An unassuming flame magically ignites a small paper rocket which shoots swirls and spirals of coloured delight while our necks crane to watch. The florid colours will cause ‘Ooohs’ and ‘Aaaah’ from every generation (unless you’re a dog, or child who hates bangs!).

Being the parent of a child with additional needs often marks the beginning of an unexpected journey. Many previously held hopes and dreams must be set to one side or adapted. We are faced with loving the daughter we have, not the one we expected. It isn’t a difficult task – loving. Especially not with our incredible, beautiful children. But uninvited pain can sweep at unpredictable times.

The trick is to ride the waves.

As a parent, our own journey is marked by milestones of acceptance. Many have written about this unexpected journey. The well-known poem ‘Welcome to Holland’ by Emily Perl Kingsley likens our unique parenting to a planned trip to Italy that ends in Holland. It just isn’t the same. We can feel pained at losing all the intoxicating Italian beauty we expected or we can look for all the beauty Holland has to offer.

More recently, a Facebook post by Shana L Anderson drew out the heart and soul that lies behind being the parent of a child with disabilities. It describes how our version of parenting can be a lot like a shopping trip to Ikea. The massive bright blue and yellow signage beckons us into an unplanned shopping experience. What you go in for, is rarely what you come out with.

The treats are not what we expect

Only Ikea is able to turn an expedition to buy bedroom furniture into  a three-hour wander. Browsing aisles and filling a trolley with tea lights and rugs you didn’t know you needed before devouring the best gravy and meatballs ever.

My own memoir is titled The Skies I’m Under. Because finding myself in a story much bigger than myself was all about learning to love the skies above me, rather than what I had expected.

It’s about letting go of the planned and finding treasure in the unexpected.

Part of our unexpected journey includes equipment

Equipment we didn’t even know existed, never mind longed for.

Decorating the nursery was not originally focused on visual stimulation or space for physiotherapy. We hadn’t banked on needing walkers, standers, frames or AAC. But alongside the beds, dining table and cabinets comfortably sit specialist seats and sleep systems. As parents, we become fluent in a medicalised, foreign language and regularly receive letters in this alien tongue.

Unexpected professionals become household names and bring with them large, bland boxes. These oversized packages contain a new kind of hope. Hope that improvements, no matter how small, will occur.

Hope that development will come, muscle tightening delayed or distortion corrected. And from the unassuming box of tricks comes seemingly simple things. But simple things, like lights against a dark sky, can brighten our life and have us unexpectedly ‘ooohing’ and ‘aaaahing’ with delight.

Sometimes, Simple Stuff really does work

So, why make it complicated? Life is challenging enough and full of the unexpected. As the popular Simple Stuff Works animation concluded,

“I didn’t expect to be a resident of Number 24 – no-one does.

I hadn’t planned on learning about medications, therapies and postural care.

But, I take the information 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 son’s future quality of life.”

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…

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.