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Category Archives: Parenting

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.

 

Childhood Cancer Awareness Month

14 Sep 2017

“I remember standing and looking at the dual carriageway that runs outside Birmingham Children’s Hospital and thinking,

“How can you all be carrying on with your lives, don’t you know what just happened?”

Now, every time I pass the same window, I think of the parents that are looking out and thinking the same thing.” Sarah Clayton, CEO of Simple Stuff Works.

September is Childhood Cancer awareness month but for the family behind Simple Stuff Works, every month is cancer awareness month.

Ten years ago, in September 2007, Abi, the daughter of Sarah, CEO at Simple Stuff Works, went to Birmingham Children’s Hospital for tests. After several months of going backwards and forwards to the GP, Abi was booked in for a scan. On the morning of the appointment Sarah promised a trip to Toys R Us, but first they had to go to the hospital. By late that afternoon, the importance of toy shopping was swamped by the news that a large tumour had been discovered on Abi’s cerebellum.

Every day, at least 10 children and young people get the news they have cancer in the UK.

10 families changed immeasurably.

10 uncertain journey’s.

Yet, with thanks to investment into treatment and research, four out of five young cancer patients can be successfully treated.

To mark Childhood Cancer Awareness Month, we interviewed Abi and Sarah to find out more.

What do you remember about your cancer diagnosis?

Abi: I remember being a bit wobbly and not understanding what people were saying. I remember the very scary walk up to the hospital.

Sarah: My clearest memory was a nurse putting her arm around me and her badge pressing against my face. I’m not a very touchy person and it made me feel really uncomfortable.

Who was your favourite professional?

Abi: Clever Claire was a play therapist and I remember laughing when she tried to explain to me what was going to happen with a tube going up my nose. She wasn’t making any sense because she put it on the dolls head, we sorted it out in the end and had a good laugh.

Sarah: There have been so many health practitioners, nurses, teachers and therapists but one constant has been Dr Peet. I first met him at about 9pm on Abi’s first night in hospital. He gently talked about what he had seen on the scan and what needed to happen over the next few days. I came to know the room we were sitting in as the ‘Room of Doom’ and quickly worked out that it was where you were taken for terrible things to be said. At one point, I refused to go in there anymore but it made no difference, terrible things still needed to be said.

Dr Peet has been honest, kind and compassionate from Day 1. He listens to Abi, genuinely cares about her views and has been a source of support and honest information (no matter how painful) from the very beginning. He has been Abi’s consultant for 10 years and recently signed us off. We will meet her new consultant in the coming weeks but I will always be eternally grateful to him and am lucky to consider him a friend.

Tell us a memory you will never forget.

Abi: Me and Clever Clare were playing with Hama beads and a little girl made us jump. The Hama beads flew in the air so it was racing Hama beads. I also remember being terrified when Clever Clare had to tell me what was going to happen in my big operation.

Sarah: I’m afraid there are too many moments that flash up before my eyes. Every anaesthetic has been tough, the wound on the back of Abi’s head after her surgery. The severe burns behind her ears during and after radiotherapy, her beautiful long blonde hair falling out in my hands as I brushed it. Trailing behind Abi as she went to the toilet whilst hooked up to four IV pumps delivering chemo, anti-sickness and fluids. Watching a machine breathe for her in intensive care, holding her little foot during every MRI Scan, praying for a good result. Despair as she would vomit another NG tube up knowing we needed to get straight to the hospital to have another. Worst of all, the funerals of children with whom she had become friends, knowing that the next could be hers.

However, I will also never forget the people we met along the way. The parents who will be lifelong friends, the sheer bravery, determination and grit of children facing gruelling treatments. The elation of good news, the kindness of others and the simple beauty and pleasure of the once ordinary and mundane moments.

What would you like other people to know about Childhood cancer?

Abi: I wish I never had cancer. I wish people understood that I can’t hear very well, that I struggle to understand things quickly and because of my memory, I can’t play ‘My Grandma went to the shop and bought’.

Sarah: That it’s never actually over. The treatments used have lifelong effects. Cured doesn’t mean that you are back where you started. I wish people knew how lonely it can be for some children after treatment. I would also like people to know how little is spent on research for childhood cancers compared to adults. If you are going to donate money for research for children’s cancers look carefully at who you donate to, Christopher’s Smile is a great place to start.

Who has had the biggest impact on you?

Abi: Clever Clare, the play therapist who made things a lot easier for me.

Sarah: Abi. I had no idea a child could be so bloody brave. I am so proud of her and the way she has handled her experiences. I can’t wait to see her enjoy the next phase of her life as she starts college.

Abi and Sarah going off to do something they love.

There are many ways you can support Childhood Cancer Awareness month. Spread the word, share Abi’s story, donate, buy your golden ribbon, add a Twibbon to your FB and Twitter profiles.

For us, we need an awareness month to highlight the stories, to get us talking about Childhood Cancer, to cause change and get the essential funding needed. For the Simple Stuff Works family though, Childhood Cancer Awareness month is also January, February, March, April, May, June, July, August, October, November and December.

Written by Rachel Wright, 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 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 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.

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.

The women behind Simple Stuff Works

24 Mar 2017

For many, Mother’s day brings a mix of emotions. Both men and women can sense the loss of their mother’s more acutely. Other’s are grieving being unable to parent children or that motherhood is not what they expected it to be. Meanwhile many of us women are pulling our hair out as we walk this complicated, exhausting and rewarding gauntlet called motherhood.

Simple Stuff Works is proud to be a family-run business, committed to putting families at the centre of its work. They proudly support campaigns like ‘Don’t call me Mum’ because they recognise how important it is to treat parents as partners and put families first.

Three generations of Simple Stuff Works Women

In both its past and present (and maybe its future), Simple Stuff Works has been pioneered by amazing women. So I asked Sarah Clayton (CEO) and Anna Waugh (MD) about their own mum and how being a parent has changed how they work.

How did your mum shape who you are today?

Sarah: My mum taught me that everyone is equal – but that systems and culture don’t always reflect that innate equality. Mum is the most courageous, authentic woman I know and I hope that I’m half as brave!

Anna: Our mum is the most caring, supportive and unstoppable woman. She taught us the value base which underpins Simple Stuff Works, one of respect, compassion and dignity. She is utterly relentless in her passion for postural care and her enthusiasm for her work has fed straight down to us. I hope we lead with the same passion and fire.

How has being a mum changed the way you work?

Sarah: I’m much more efficient! I can get more done in half an hour than I ever did in a full day before having children.  My kids also provide a great benchmark for my own internal quality control system.

Anna: Being a mum has changed the way I work in every way. When I am supporting families I always consider my own children and how I would want them to be supported.

How do you think your kids would describe you as a mum?

Sarah: I’m too busy… they often say that and that I should slow down (usually seconds before asking me to drive them somewhere they urgently need to be). They would probably say that I am bossy and that I nag them a lot… but I think they would also say that they feel loved and supported.

Anna: Funny, a bad cook and possibly a bit shouty at times! They’d say I was caring, kind and good fun too (I hope!)  

What is your greatest challenge as a mum?

Sarah: Remembering where they all are – genuinely. Keeping track of them, remembering to drop them off and pick them up again is a military operation in our house. The last thing I do at night is a roll call in my head… 

Anna: As a single mum and running a family business, I battle continually with guilt. I feel guilty if I have to work away, or if my kids have to be looked after by family. I worry that I spread myself too thinly. I’m trying my hardest to be present when I am with them and not be distracted by my emails or my phone ringing… but it can be a real challenge.

What is the most rewarding part of being a mum?

Sarah: Seeing them growing up into confident and happy young people. I wish that I could package up experience, knowledge and self-esteem in a tablet and make them swallow it… but then I realise that they are getting on fine and that fills me with pride.

Anna: Seeing their gorgeous faces when I get home, watching them grow and change, seeing their personalities develop. I am so proud of both of my children and I am so proud that, as a threesome, we achieve so much on a daily basis. Everything I do is driven by me wanting to provide them with the best start in life and I think that they have made me a better person.

What is the one thing you would like to say to the mum’s who come in contact with Simple Stuff Works?

Sarah: A big thank you for trusting us to support you. We know that your children, no matter how old they become, are the most precious thing on the planet – we will do all we can to help you to help them.

Anna: I would like any mum who finds themselves needing our support to know that we are absolutely dedicated to getting it right. We will support every family with compassion, dignity and respect. We are here to answer any questions that people may have as, at the end of the day, we’re here to support your family.

See, I told you they’re awesome.

There are so many challenges to being a mum and so many reasons to raise a glass and thank the women in our lives who shape and nurture us.

 Happy Mother’s Day

from everyone at Simple Stuff Works

 

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.