Disabled Living

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Sensory Wellness Inspired by People with Profound Disabilities

This is a guest blog for Disabled Living written by Joanna Grace from The Sensory Projects. It has been written in Joanna’s perspective around the pandemic and her thoughts on sensory wellness, inspired by people with profound disabilities.

As lockdown began, many people with profound and multiple learning disabilities who had been used to leading rich and varied lives, attending schools or care settings, suddenly found themselves at home, isolating with their families or their care teams.

Whilst some people around them struggled, many of the people with profound and multiple learning disabilities that I know thrived. And as they did so, they reminded those closest to them of the resources available to use all to boost our wellbeing.

Here are three top tips that I have learned from them.

Take joy in simple things

Overthinking stuff can really clog up the capacity for fun in our lives. One family sent me a video clip of their son laughing hysterically at a sneeze, and another shared the bubbling joy of their son’s experience of an ice lolly: the surprise on his face at the coldness, the grasping of his hands against the slippery ice, and the chase of this strange object around his lap tray. What started out as bemusement quickly slipped for him into a joyful exploration.

Sometimes we do not allow ourselves these pleasures, would we look silly if we let ice slip out of our hands, do we politely supress our giggles at how funny that sneeze sounded?

In your own life watch out for the simple things that bring you joy and welcome them, one of the perks of lockdown is that you are not in a public space, you are in the privacy of your own home and you make the rules here. If you want to play with your food: play with your food!

Spend time in a sensory moment

Anxiety is born out of a fear for a future that maybe. In a pandemic, when any of our futures and any of the futures of our loved ones, could include a horrible illness we have a lot of reason to feel anxious. Justified as it is, it is no way to live. Taking time to spend in the here and now, in the present, without fear, is immensely valuable.

I am in contact with lots of teachers, all struggling to provide a meaningful education online, in our chats many of them talk about how much they are missing the steadying presence of their students in their lives. If you are in the company of someone with profound and multiple learning disabilities you are in the company of someone who is a master at connecting with the present moment. One teacher who contacted me spoke of her students being a “daily reminder” to her to connect with the present.
I have begun a class in sensory-being online. Sensory-being is a form of shared mindfulness based around a wonderful sensory object. A parent who took the class told me it had given her a way in to the peace in a moment that her daughter (who has profound and multiple learning disabilities) knows instinctually. She described how with two other children at home and her husband working from home everything can be very fraught. But by spending time with her daughter, sharing a moment of sensory engagement, it is as if she can take a little step out of the busy chaotic world around her and enter a little pool of quiet and calm.

Enjoy the nearness of people you love without need for words

Several families I know made the decision at the start of lockdown to bring their loved ones home from their care settings. One in particular agonised over the decision. Their son’s care placement was so good, he had friends there, access to all sorts of equipment and activities that he didn’t have at home, and although many of them would have to cease no matter where he was because of the restrictions they knew that the care team he was with would go above and beyond to provide him with interesting and exciting days. In comparison, they worried, what could they offer him at home in their terraced house? Ultimately they went with their gut instinct, which was in dangerous times to gather their family close and they bought him home. I have the privilege of watching their lives through the window of Facebook, and aware that they were worried I kept an eye out in my newsfeed for their posts. Initially they seemed to be going above and beyond creating activities for him. Their posts were fun, but something about them was a little too loud, a little too bright. They were trying a little too hard.

The parents are well into their late sixties and their son is in his late thirties. I had a few brief messenger conversations with the father, asking me questions about colour changing lights and where they could get particular gadgets they’d seen. I do not have a lot of tech knowledge but I suggested they could get a similar effect with a torch, some coloured cellophane and a big umbrella.

I kept watch, the umbrella was purchased, there was the son’s smile of amusement at the light show cast by the torch upon it and the proud smile of his father beside him. In time there were less posts. Now I see the odd one or two, they take him to a place they love to walk that has path that is easy for his wheelchair at times of day when they know no one else will be there. He sits in the garden alongside his father as he does the gardening, plant cuttings are placed on his lap tray for him to explore.

I sent a message. “How are you getting on?” I asked. His Mum wrote back. She said they had been so worried about being enough for him, but through wearing themselves out trying they had had to stop, and when they stopped they realised he was happy to just be with them. She said now he is a part of their lives rather than a job they are doing. And she described how he will vocalise along with his Dad singing as he gardens, and that she loves to stand in the kitchen window and listen. She said previously her husband would have sung from time to time whilst gardening but their son’s vocalisations encourage him to do it more and that brings her joy.

Being close to people you love and trust is incredibly precious. You do not need to be anymore than you are. And you do not need to talk or have words for things. Sharing time is precious.

The pandemic has been and continues to be incredibly hard, but through its darkness much light has shone. I’ve been impressed by the embodied wisdom of people with profound and multiple learning disabilities, as I’ve shared above. At the start of the pandemic I grumped about possibly delivering my training, that has always been done in person in the past, online. But when I did finally get myself in gear and do it I was touched that people joined it from around the world, in person I can touch lives as far away as the trains in the UK can get me, but online I can touch lives around the world.
The staggering kindness of people has been one of the brightest lights, we’ve all watched the heroism of the NHS staff and the keyworkers that have kept everything going. Through my little Facebook window I’ve seen glimpses into just how bright that light can be. Recently a man I know who has profound and multiple learning disabilities caught COVID19. He lives in a care setting and it was so frightening for his family to be unable to be with him. But his care team closed around him and supported him as if he were their own son. When some of them got sick too and had to be replaced his family were amazed by the care workers who volunteered to leave their own families at home and move in with him 24-7 so they could be the support he needed. In times of greatest need, strangers to them stepped forward and offered to help.

I see kindness everywhere, in big ways and in small. Since the start of lockdown I have been curating a list online of free resources people and organisations have been giving away. It is as if, when faced with this awfulness, everyone looked around for what they could do and offered it up. The news will report those not following the rules, but the great majority are, it is one big team effort to keep each other safe, one enormous act of care. People are awesome!

March 8, 2021
Mother’s Day Gift Guide by Disabled Living

As Mother’s Day approaches, you may be stuck wondering what to get your Mother to say a little thank you. If your Mother is elderly or has some mobility issues, then why not consider taking a look at Disabled Living’s online shop? From cosy slippers to memory boxes, we have picked out some of our favourite gifts here.

Shopping Trolley with Seat

Both thoughtful and practical, this shopping trolley has a unique design feature that includes a fold down seat. This is particularly useful for those who would like to take a little comfort break when they shop. The bag itself is light and foldable, making it perfect for storage and transportation.

Purchase here: https://www.completecareshop.co.uk/mobility-aids/shopping-trolleys/shopping-trolley-with-seat?a_aid=59d50a2275cd7

Wool Fleece Wheelchair Seat Cover

Made from real wool, this wheelchair fleece seat cover is perfect for the colder winter months. It is guaranteed to keep your mother warm and cosy, whilst keeping skin from becoming clammy. Allowing the skin to breathe effectively is an important factor in effective pressure care management and reduces the risk of abrasions on the skin, which is another reason why wool makes the perfect seat cover.

Purchase here: https://www.completecareshop.co.uk/wheelchairs/wheelchair-clothing/wheelchair-fleece-seat-cover?a_aid=59d50a2275cd7

Bed Tray Table

This bed tray table is an excellent daily living aid for individuals. With its light wood finish and folding legs, it is ideal for mealtimes when seated in a chair or bed. It is also perfect those who like to read or write without having to sit at a desk. Not only is it an attractive piece, but the wooden finish makes it durable and easy to wipe clean.

Purchase here: https://www.completecareshop.co.uk/beds-and-bedding/bed-trays/bed-tray-table?a_aid=59d50a2275cd7

Burgundy Slippers

These gorgeous, high grade slippers in burgundy with a floral design make the perfect Mother’s Day gift for those looking for something both comfortable and stylish. They are ideal for the elderly or disabled and have non-slip soles to prevent slips and falls for maximum security. These high-quality slippers are also easy to put on and accommodate swollen feet with ease.

Purchase here: https://www.completecareshop.co.uk/dressing-and- -aids/ladies-slippers/ladies-slippers-burgundy-size-7?a_aid=59d50a2275cd7

Memory Box

This memory box is designed for individuals with dementia or other conditions which result in memory loss. Ideal for those living in care homes, this beech memory box can provide and instantly recognisable and reassuring place to aid the user. Why not include mementos and photographs to show different aspects of your mother’s life? This can be a great way to initiate conversation and aid effective communication.

Purchase here: https://www.completecareshop.co.uk/therapeutic-aids/reminiscence-therapy/memory-box-beech?a_aid=59d50a2275cd7

We hope you have found our Mother’s Day gift guide useful. If you are interested in looking at some of the other things Disabled Living‘s shop offers, please visit: https://www.completecareshop.co.uk/?a_aid=59d50a2275cd7

March 1, 2021
5 Best Audiobooks If You Are Raising A Disabled Child
This is an article written by Annabella at 10 Audioz for Disabled Living.

Parenting can be a challenging aspect of life. Nevertheless, parenting kids with special needs can sometimes pose extra challenges. At first, they need to learn about their child’s disability. Parents will do a lot of locating, research and access resources and effective treatments. The journey of life is never easy. If you have a child with a disability, you may also face extra physical and emotional demands.

A useful source of knowledge to help you raise a child with a disability is via audiobooks. Here is a list of the best children audiobooks that will help you and your child.

Will My Kid Grow Out of It? A Child Psychologist’s Guide to Understanding Worrisome Behaviour (2014)

The audiobook by Bonny J. Forrest provides practical solutions to parents if their child has:
- Autism
- Schizophrenia
- Eating Disorders
- Depression
- ADHD (Attention Deficit Hyperactivity Disorder)
Dr Forrest in Will My Kid Grow Out of It gives invaluable advice to parents. The advice answers many questions that parents may have about their child’s disability. It includes a list of questions that the author suggests parents should ask professionals.

The audiobook links to notable scientific articles, websites, and books. Additionally, the author believes in screening children from a tender age. Through screening, a child will have access to resources. It also provides assurance to anxious parents on how to cope in this scenario.

Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs (2005)

Written by Kate Strohm, the book provocatively tackles how siblings may feel when their brother or sister has a disability. The author grew up with a sibling who had cerebral palsy. Kate Strohm is a health educator as well as a counsellor. She discusses growing up with her sister and some of the challenges that incurred.

The author explores the feelings she felt and provides coping methods for if things become difficult. This is a must-listen audiobook to work out through emotions. The author uses her own experiences alongside the experiences of others who live with disabled children.

Ten Things Every Child with Autism Wishes You Knew: Updated and Expanded Edition (2012)

The audiobook speaks about the characteristics which shed light about autism in children. The experiences and techniques in the audiobook are very much helpful. However, the most important thing parents should remember is that all children are different.

Parenting can be tough whether your child has a disability or not. The central idea of the audiobook is to help your child progress. Everyone deserves opportunities as well as resources to grow.

The Complete Guide to Creating a Special Needs Life Plan: A Comprehensive Approach Integrating Life, Resource, Financial and Legal Planning to Ensure a Brighter Future for a Person with a Disability (2013)

The name of the audiobook reveals its message to parents. Hal Wright’s holistic guide focuses on everything which is needed to raise a child with a disability. The audiobook will teach you several types of planning. It will also give you an insight into legal and financial plans. The author of the book is a notable financial planner and raises a disabled daughter.

If you are interested in finding out more about how to plan your finances for you child, then why not give this audiobook a listen.

The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son

This memoir has been penned down by Canadian Journalist Ian Brown. Brown’s son has Cardiofaciocutneous, a genetic syndrome. Cardiofaciocutaneous aka CFC is a rare syndrome due to which Ian devoted his life to understanding the disorder.

The best feature of the memoir is that it is brutally honest. At the same time, the memoir is relatable to many parents with disabled children. Brown’s son’s condition means that him and his wife devote much of their time to nurture him. Moreover, the author suggests how both he and his wife are the son’s greatest advocates.

Overall Thoughts

The audiobooks on this will hopefully make life easier for you and your child. The techniques mentioned in these books are unique in their own ways. However, it is important to consider that children might react differently to professional help from books and audiobooks. Visit 10audioz.com to explore a range of audio books for children.
December 1, 2020
Are You Sitting Comfortably?

This is a guest blog for Disabled Living written by Peter Wingrave, Sales Director at AAT GB

Postural support: it’s one of the biggest headaches for carers and healthcare professionals, how to balance appropriate cushioning with health and wellbeing.

Treating pressure sores costs the NHS £1.3m/day⁽¹⁾. Before that stage is reached, how much time do carers- paid and unpaid- spend re-adjusting and turning their charge to prevent pressure, adjusting their position to ensure they are comfortable, stabilised and supported, plumping up cushions etc?

In many cases, just a change in thought process and choice of postural support would reduce or even eliminate the risk of a sore even beginning.

Health & Wellbeing

Health & wellbeing is not just pressure sores. It’s about sensory wellbeing, giving someone that feeling of safety and security without feeling restricted. It’s about physical wellbeing, supporting the body during a spasm, protecting during involuntary movement.

Health & wellbeing affects everyone involved: the person needing that postural support, and the person or people who look after them. Anyone involved in care is aware of the issues of moving and handling, so any system that helps reduces loading on them has got to be good too.

The benefits of the bean bag concept are widely accepted, as are the disadvantages: that the slightest movement changes the shape of the cushion leading to at best inadequate support or at worst the user ending up on the floor! A more solid stabilisation is needed.

Vacuum Posture Technology

Traditionally, Occupational Therapists are used to a rigid version, a fixed mould type system. However, the one inevitable in life is that our needs change with time- we grow, our condition deteriorates, or we develop other issues. These all impact on the size and shape of the mould. Changing that mould takes time and costs money.

What about an option developed in conjunction with Occupational Therapists, that enables you to perfectly, finitely adjust the shape of the cushion- whether a small arm support through to a bed? An option that can be used for sitting, lying, sleeping, bathing, swimming, travelling? An option that then holds that shape, firmly, but that you can easily adjust as needs change? An option that you can change at no cost, on the spot, instantly, and without having to organise specialists to attend?

Vaccuum technology addresses all those limitations. It works by simply positioning the user on the cushion and attaching a pump which sucks the air out from between the ‘beans’ so it forms firmly and evenly around the body area to be supported and stabilised. It forms without pressure points and holds that shape for weeks. It exactly mirrors the shape required and can be infinitely and minutely adjusted for optimum user comfort and support.

To create/maintain the shape, simply attach the pump and provide suction for a few moments. To create a new form, allow some air to re-enter via the valve, attach the pump, and turn on for the few minutes necessary until the required degree of firmness is achieved.

See how it works here: https://youtu.be/Apng8U5cYK0 and https://www.aatgb.com/posture-cushion-user-guide/

Any appropriately-trained carer can create the support as needed. In these COVID-different times, there is no need to arrange for a specialist appointment, and wait days, weeks, months for a new mould.

Not Just a Posture Cushion

The structure also means the bag can be used as a sensory aid: pop an appropriate music player underneath, and the sound, beat and rhythm will transfer through the cushion.

The outer fabric is waterproof yet breathable. Thus the cushion can be quickly and easily wiped clean, disinfected and sterilised. It can be used in the bath or swimming pool.

Small, velcro-fixed versions mean a single limb can be stabilised during a period of therapy. Large versions replace bed mattresses and can be exactly formed to shape and support the trunk and limbs as needed, even allowing creation of abduction wedges. Cushions can be taken wherever the user needs them: one Stabilo user has taken part in a disabled sports challenge, using his cushion to stabilise him in a canoe! More typical usage is stabilisation in a car seat, a swing or a wheelchair.

To find out more about how AAT Stabilo vacuum posture cushions can support you and your charge in daily life, click here: https://www.aatgb.com/posture-cushions/, call 01978821875 or email sales@aatgb.com.

Reference(s):

(1)https://nhs.stopthepressure.co.uk

October 13, 2020
DMUK Baywatch Campaign

This is a guest blog written by Heidi Turner on behalf of DMUK for Disabled Living.

DMUK’s Baywatch campaign, which looks into levels of disabled parking abuse at supermarkets, is changing format for 2020.

A common problem for many disabled motorists is not being able to park at their desired destination, especially at their local supermarket. The major complaint is that the disabled bays are all occupied with cars not displaying a Blue Badge.

Disabled Motoring UK’s Baywatch campaign seeks to address this. This campaign researches the level of disabled parking abuse at supermarkets, by asking disabled motorists to survey their local supermarket car park. Specifically, they count how many disabled bays are provided and how many cars that are parked in them without displaying a Blue Badge.

We launched this year’s campaign in March 2020 with a great response from supporting organisations and the campaign’s sponsor, the British Parking Association. DMUK is so pleased with the positive response it gets from its members, the public and organisations. Last year was our best campaign yet with record numbers of participants. However, this was before the world was swamped by the current Coronavirus pandemic. Even though many areas of the UK are seeing a decrease in infections and deaths from Coronavirus, and the government are easing lockdown restrictions, DMUK has decided that it is not appropriate to ask individuals to physically go to a supermarket car park and count cars not displaying a Blue Badge which are parked in disabled bays. This could put participants in a position where they find it harder to social distance and we would never ask people to put themselves at an increased risk of catching the virus.

Join our Survey

Instead we will be running a survey for the month of August which participants can complete without leaving their home. DMUK will ask individuals to think back over the last 12 months to consider their general parking experience and ask them to answer some questions about this experience at supermarkets and on their everyday journeys. We will use this data to tackle the supermarkets and other parking providers over their disabled parking policies. As a thank you for taking part there will also be an opportunity for one participant to win a £25 M&S voucher.

The survey will be printed in the August issue of Disabled Motoring and there will be an online version going live in August which can be accessed through the website: https://www.disabledmotoring.org/baywatch-2020

We hope that in August 2021 to have this pandemic long behind us and run our usual Baywatch Campaign.

The campaign has support from Baroness Tanni Grey-Thompson, she commented: “It’s so sad that Disabled Motoring UK has to run its Baywatch Campaign. Disabled bay enforcement should be mandatory, especially for the big supermarkets that can afford to invest in policing their car parks. I see disabled parking abuse every day, it’s never a surprise to me, including at my local supermarket. There is a real lack of understanding about how essential these bays are to disabled people and I applaud DMUK’s Baywatch Campaign as it plays a vital role in highlighting the issue of disabled parking abuse at supermarkets.”

Heidi Turner, Communications and Campaigns Director at DMUK, said: “Baywatch is one of the charity’s longest running campaigns and is really important to draw attention to the parking problems that disabled people face when just trying to do their everyday grocery shopping. The charity has decided to change the format of Baywatch this year in order to keep our supporters safe. Nevertheless the new survey will provide us with some really useful data to keep the pressure on the supermarkets to do more to manage their disabled parking bays properly. Disabled motorists face parking problems in all aspects of their life and the new survey will also encompass some more general parking questions which will expand the scope of the DMUK Baywatch Campaign.”

DMUK Baywatch Appeal

In October 2019 DMUK launched its Baywatch Appeal as a way of raising additional funds to support the charity’s campaigning efforts. Since its launch the charity has raised an extra £5740.58 in added donations. Any extra money the charity can raise to support campaigning is so helpful. We understand that many people are under financial pressures at this time and ideally the best thing that individuals can do is to fill in the Baywatch survey in August, but if you can help with a donation too that is very much appreciated. Donations can be made through our website www.disabledmotoring.org or by calling 01508 489449.

DMUK Baywatch Sponsor

DMUK has worked for many years with the British Parking Association (BPA) to improve parking for disabled motorists. The BPA sponsored the campaign in 2019 and is once again sponsoring it for 2020.

Kelvin Reynolds, British Parking Association, Director of Corporate and Public Affairs, said: “We wholeheartedly support DMUK’s annual Baywatch campaign. With one in every five disabled parking bays being misused at supermarkets, this campaign is a great way to raise awareness of the importance of only using disabled bays if you are a Blue Badge holder. We encourage as many people as possible to participate in the survey.”

August 4, 2020