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Category Archives: Complex disabilities

The antidote to the feeling of losing control

15 Jan 2019

One of the first things to disappear when you become the parent of a child with complex needs is a sense of control. Where once you felt the master of your own destiny (foolishly or not) the world and your week become shaped and determined by other people and their growing list of tasks.

It’s the beginning of the New Year.

2019 is unravelling before our eyes.

A shiny, new calendar is hanging on the wall.

The empty diary pages expectant ready to be filled.

Only kidding

The diary has been filled for months with appointments and therapies, tasks and responsibilities.

When I train professionals and lead workshops with parents, I talk about the initial experience of becoming the parent of a child with disabilities.  To me it feels as though we fall headfirst into a Vulnerability Labyrinth and is probably the same for any person who has heard the carefully crafted words of someone breaking bad news.

In the beginning, there is a diagnosis, trauma or significant event. We experience a defining moment that splits our life into before and after; changing our hopes, dreams and expectations for the future.

Then often, we sit in the centre of the storm as people buzz around. Sometimes it feels as though life goes in slow motion. Everything around us happens relentlessly as every minute ticks by with the slow monotonous pace of a midnight clock.

All we have is the present

The past seems so insignificant and the future unknown. The people surrounding us start using language and constructs that we don’t understand causing us to stumble into a rabbit warren of disability jargon and medical liturgy. The rope of life we have been diligently climbing shoots through our gripped hands, no matter how hard we try to hold on. Instead we slide to the ground deflated and tired, leaving our fingers red and raw.

Very soon, that age old saying becomes true; the tail begins to wag the dog.

The complexities of disability morph and grow, out sprinting the simplicity and ordinariness of family life.

Then sitting at our computer, in the wee small hours of the night, you find yourself scrabbling for information –  for control. Google becomes a best friend and arch enemy. One minute a lifeline of hope is flung your way, quickly followed by a stark truth you are ill prepared to read in black and white.

Compounding this sense of confusion is the lingo, language, secret policies and protocols that frame the world of disability.

“Such and such can’t happen until you’ve seen this person.”

“You can’t have this help until you’ve got this diagnosis.”

“Yes, you need to see this therapist, but that professional has to refer you and they have a three-month waiting list.”

As a parent, as a person just trying to determine their own destiny, sometimes all I want is to simply be a person that contributes to the decision.  I don’t necessarily want the weight of responsibility to lay entirely on my shoulders, but I want to be part of the decision-making process.

But there is hope.

There is something that can help dispel this vulnerability labyrinth.

There is a magic wand.

Effective communication

Effective communication between parents and professionals is paramount to empowering and enabling parents to engage in their lives and in the lives of their children. It is the first ingredient for partnership and co-production. There is a natural gap between parents and professionals. Both are experts in their own right. Both have skills and knowledge necessary for best care to be provided. But the gap between them needs to be bridged with effective communication.

Sometimes information will be hard to hear.

Sometimes hard conversations need to happen.

But the way a professional builds trust, supports and listens will directly impact the feelings a person, parent or relative has when they leave a conversation. I might not like what is being said, but if I feel heard, if I trust the person speaking to me, if I know they have me and my child’s best interests at heart, then the sting of hard news is easier to bear.

After all is said and done, I don’t want to be left sitting in my vulnerability labyrinth scrabbling for control. Rather, with effective communication, I can feel like an essential part of the team of professionals trying to get the best for the person I love.

For training in effective communication between parents and professionals check out the Goldsmith Centre and Born at the Right Time. In a time of austerity and uncertainty we need to ensure the way we communicate improves each other’s lives and the lives of the children we love and serve.

 

Written by Rachel Wright for Simple Stuff Works.

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 conferences, leading workshops with parents as well as training professionals.

 

 

Dear Professional…

27 Sep 2018

Dear Professional,

There are so many of you, I’m not sure where to begin.

Maybe you’re the Physiotherapist, OT or Speech and language therapist who arrange with each other when it is best to meet, then ask I comply with the time and date. Please know I’m grateful for your input, skills and knowledge. My son and our family benefit from your care but remember I have a diary too.

I am an equal partner in any discussion about my child.

Maybe you’re the receptionist (GP, pharmacy, school, artificial feed company) who have to handle my call when I’ve run out of my son’s medications, pads, syringes or milk.

Please forgive my forgetfulness, I have a lot on my plate.

Maybe you’re the teacher, learning support worker, school transport assistant, SENCO or visual impairment teacher who hears the brunt of my frustration and floods of tears. Please know I’m only focused on trying to get the best for my child; even if I don’t show it well. Help me see you what you think is best for my son too.

Maybe you’re the carer who walks in my home at 7am in the morning or 10pm at night to care for the son I want to mother alone. Please know, I appreciate you being here; your support and tender care. But really, I’d rather this was different. I wish you didn’t need to come.

It is hard watching you do what I want to do alone.

Maybe you’re the engineer or company representative who knocks on the door talking about equipment we need but I would rather we didn’t have. Please know I’m grateful you use your innovation and creativity to serve families like mine. But don’t forget,

I miss just popping to town for my son’s Christmas trike like everyone else.

Maybe you are the person who helps when the splint is broken, machine won’t stop beeping or hoist sling is too small. Maybe you’ve asked me to do this one little thing…

Please be kind, I’m doing my best but life just seems to keep on happening.

Maybe you’re the Specialist Nurse or Consultant who thinks,

‘Surely one appointment a year isn’t too much to ask.’

Please know I want us to communicate well and appreciate your valuable input.

It is never just one appointment, it is always one more appointment.

Maybe you’re the expert coming to give advice about a sleep system, specialist chair or wheelchair. Please remember this is my home and you are talking about the private life of my family. Please inspire me to see what you can see. Help me understand what can be done rather than walking out the door and leaving my good friend ‘guilt’ behind.

Dear professionals, you are an army of wonderful people who support families like mine. Often you go above and beyond what is expected. I don’t underestimate how fortunate we are to have such a wide variety of specialists supporting us

Each day I wake and try to stand tall amongst you all and yet I can feel lost.

I can quickly feel overwhelmed with yet another task on my to-do list.

In my life as a parent carer, I can feel so small.

With each diagnosis, therapy, appointment and piece of equipment, the authority I have in my world shrinks.

It is you who dictate my daily life and weekly routine.

Often, I am left feeling dwarfed with no real control.

But dear Professional I want to say thank you.

For listening, working, caring and trying. Thank you for so much but especially when;

  • You take the time to listen as well as speak
  • You look me straight in the eye and know my name
  • You see my child the way I do
  • You practice in a way which puts power back in my hands
  • You acknowledge the pressure and strain I face
  • You demonstrate your value and respect for who I am and what I do
  • You show me we are a team and all working towards the best for my child
  • You inspire me and trust me with knowledge and skills
  • You support me, especially when the tears are ragged and the day is hard

Thank you

 

Written by Rachel Wright for Simple Stuff Works.
Images by Nicola Parry Photography 

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.

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.

Lots of famous people and Gethin Jones: BAPs 2018

08 Jun 2018

Gethin Jones met my husband the other day.

‘Who is he?’ I hear you ask.
Well, my husband is the handsome man in this picture, and has been the leading man in my life for over twenty years.

Gethin Jones (the other bloke), well I used Google to research him. It seems he was a Blue Peter presenter long after my time but you might also know him as the chiselled faced, bright eyed bloke from Strictly Come Dancing or …presenting various television shows. I found him to be warm, professional and a genuine man. And should you happen to touch his left arm in mid-conversation you might notice he has very firm biceps.

Meeting my husband was such a momentous occasion for Geth (best buds now) that he took to Instagram to tell the world. This portentous occasion came about because I had the privilege of being the finalist of the BAPs Awards, Bloody Awesome Parents Awards, run by My family Our Needs and Bringing us Together.

It was a glitzy affair in Coventry which brought together the bloggers of parents of children with disabilities. The tables were perfectly set. Music and chatter filled the room, while the lighting made us all appear slightly blue; which was great as it camouflaged the rose-tinted cheeks inflicted by free prosecco and jittery nerves.

It was always going to be a great night. Pack a room full of people who write about their lives, wear their hearts on their sleeve, share a rare form of camaraderie and who rarely get a night out – and you create a heady cocktail of community, laughter and letting your hair down. It is uncommon for a room to be packed full of people who understand each other in a deeper way. People who recognise the pressures, the joy and rollercoaster of emotions from being the parent of a child with additional needs.

It was also a roll call of blogs which I avidly read and make me feel a little less alone.

Some whose children have very different conditions to my own like:

Joseph and his Amazing Spectrum Coat (Tina Medlock) – she shares the truth about life with her son who has autism and she might swear a bit… actually, a lot. Here she is doing her Catherine Jenkins operatic impression on the night.

Mamma Unexpected (Hannah Young) – she’s fierce and funny and I want to be like her when I grow up. She developed Girl Tribe a non-judgemental place for women to get together and shout about how great they are (and they have cool T-shirts).

Autism from a Dad’s eye view (Kevin O’Neill) – won best microblogger and raised the cool stakes in the room by a mile.

 

 

Stories about Autism (James Hunt) – took it all in his stride having won at last years awards.

 

 

This photo of Geth attempting to take a selfie of James and Kevin would suggest a boy crush was flourishing on the night.

 

 

Autism kids on tour – Autism without limits (Star Harford) a new blogger on the block giving useful and dynamic advice about places to go and things to do with children who have autism.

 

 

My kid loves Broccoli (Annie)– her chatty and informative blogs drop into my mail box regularly.

There were also some amazing finalists missing:

Faith Mummy (Miriam Gwynn) – who writes about her two very different children with autism. Her daughters own post, The reason I don’t like to eat, and is an insightful and powerful read.

Revelations of a Slummy Mummy (Lucy Parr) – my friend Lucy is lyrical and witty, with more determination in her little finger than most people have in their whole body.

But then there were other bloggers walking a very similar path to mine

My Daily Miracle (Rochelle Fellows) – who writes with authenticity and love about her beautiful son who is the spit of mine ten years ago.

Little Mama Murphy’s (Emma Murphy’s) mum stole the show when Gethin revealed she had said out loud what half the women in the room were thinking; offering him the other side of her double bed that night. However, Emma was there, not to get her mum a date, but because her blog Dear Doctor beautifully depicts what is so often happening under the surface of routine interactions.

When she isn’t swooning at Gethin Jones, Emma recently shared how, with thanks to the support of Simple Stuff Works and the private physio Tess, her son’s hastily deteriorating curvature of his spine has been halted. A profound testament to professionals working with families like ours that taking the time to inform and educate can make a tangible impact through equipping parents with the knowledge that can change their child’s life.

But the person who probably impacted the most people in the room was Nikki Lancaster from Living with Lennon.

Amidst the fun and frivolity, Nikki talked about her son Lennon who died suddenly on 3rd August 2017 and without dampening the mood but with dignity and poise, she challenged everyone in the room to think about how we give our children a good death, not just a good life.

And for some of us sitting with fizz in our hands that reality was poignant and true. ‘It’s about quality, not quantity’ she said simply. It’s a truth which remains just as important when dressed to the nines and hoping to win an award.

We aren’t good at talking about death. We try to parcel it up and save it for darkened rooms with boxes of tissues. But Nikki showed everyone in that glitzy room full of smiles and laughter that as heart-breaking as loss is, it can be done well; leaving the legacy of our loved ones continuing long after their last breath.

Gethin met my husband  the other night, right after he awarded me with the Blogger making a Difference Award. If you want to imagine how it happened, think rabbit and headlights. I was shocked. I didn’t even look at my husband after my name was read out. I simply stood up and started walking towards the stage like a dazed gazelle (it was elegant – I didn’t stack it up the steps).

It was a fab night, with the best biceps in the room going to…the husband.

 

 

Professional photographs courtesy of Ravi Chandarana and My family our Needs.

Written by Rachel Wright for Simple Stuff Works.

Rachel is best friends with Gethin Jones, a nurse, author, speaker and mum living in Essex with her husband and three sons. 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.