ISSUE 12 / MAY 2021
IN THIS ISSUE... CALLING ALL SUPERHEROES: FIND YOUR POWER CHALLENGE FUNDER FINDER – FINANCIAL SUPPORT EMOTIONAL WELLBEING IN PARENTS OF DISABLED CHILDREN TOP TIPS FOR HELPING CHILDREN’S FINE MOTOR SKILLS BED WETTING PROBLEM? HELP IS AT HAND!
NEW! PERSONALISED BED/COT VIDEO ASSESSMENTS AND DEMONSTRATIONS
with our Occupational Therapist, Shaun Masters Easy, fast and safe for all families and professionals • Easy-to-use appointment calendar • No need for home visits or travel – Covid safe! • FREE individual assessments with safe software • Great way to include family members, carers and therapists in one call • Individual or multiple products can be seen and recommended in one appointment • Opportunity for us to see the right place for a child’s cot or bed in your home • Recommendations from a highly experienced OT • Working smart to achieve faster positive outcomes for you • 14-day Suitability Guarantee on all products CLICK TO BOOK A VIDEO ASSESSMENT HERE
Future proofed, fully modular Mascot cot beds available fast from stock
CLICK FOR A VIDEO
A leading and proven choice from the extensive Theraposture range of adjustable care cots
BS OHSAS 18001:2007
Trading name of SN Registrars (Holdings) Ltd
Freephone: 0800 834654
YOUR INDEPENDENCE, OUR COMMITMENT
Theraposture Limited, Kingdom Avenue, Northacre Industrial Park, Westbury, Wiltshire. BA13 4WE. Open: Monday – Friday, 8:30am–5:30pm. Answerphone messages can be left at all other times.
CLICK TO EMAIL US
www.theraposture.co.uk Proud to work with:
WATCH OUR KIDZ VIRTUAL WEBINARS: 28TH JUNE 11AM-12, 29TH JUNE 11AM-12, & 1ST JULY 11AM-12
WELCOME TO OUR LATEST ISSUE
e have just crossed another milestone as Covid restrictions are eased further and we can now meet indoors. It has been a long haul especially for the children, but hopefully having the opportunity to meet up and stay over with friends and relatives will go some way to getting back to ‘normal’. We have an action packed edition of the Kidz to Adultz Magazine, kicking off with an article about ‘The Superhero Series’, the UK’s one and only disability sports series for the everyday Superhero. We have information from the charity Dressability, with step by step instructions on how to make bibs and cravats from school sweatshirts. DanceSyndrome tell us about young people who ‘feel like they are flying’ and we have some great tips for helping children’s fine motor skills. During the Pandemic much has been written about the impact of mental wellbeing on young people, but are we at risk of forgetting the parents? Joanna Griffin, Counselling Psychologist and parent to a young man with cerebral palsy, a learning disability and autism shares with us an extract from her very recently published new book, ‘Emotional Wellbeing in Parents of Disabled Children’. I adore reading the articles sent in by parents about their journey, challenges and achievements. Lisa, mum to Avery tells us about ‘A Very special journey’. Venue to Virtual is back at the end of June, with a difference as we showcase equipment for children and adults with disabilities, older people and those with long term health conditions. We are calling this final virtual event, ‘The Disabled Living Collective’ as we bring together all of Disabled Living’s services – Kidz to Adultz, Equipz and Bladder & Bowel UK. This was a suggestion from a few of our readers, who were also supporting parents and grandparents who had mobility problems during Covid Restrictions – our readers have such great ideas! Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions Disabled Living #kidztoadultz
CONTENTS... Calling all superheroes........ 4 Venue to Virtual.................... 6 Starlight Children’s Foundation............................ 8 A very special journey........10 Enuresis (bedwetting) alarms..........13 Dreams come true for Grace..............................16 From a school sweatshirt to a designer accessory.........17 Unique – rare chromosome disorder support group.....18 Four tips for helping children’s fine motor skills.........................20 Day by day: emotional wellbeing in parents of disabled children................24 Funder Finder: Part 1..........28 New book: Microwave Cookery............30 The benefits of dance for children and young people with disabilities or additional needs............32 Clear expressions...............34 Discover something new from the comfort of your home!......................36
FANCY BEING IN THE NEXT ISSUE?
If you would like to talk to us about promoting your company or organisation in the next issue of Kidz to Adultz magazine, call us on 0161 214 5959 or email us at firstname.lastname@example.org
Disabled Living, Burrows House, 10 Priestley Road, Wardley Industrial Estate, Worsley, Manchester, M28 2LY
AS NEWS EMERGES THAT LOCKDOWN HAS HIT DISABILITY SPORT PARTICIPATION HARD, MARVEL UNITES WITH SUPERHERO SERIES TO LAUNCH A SUPER COUNTERATTACK…
he Superhero Series, the UK’s one and only disability sports series for the everyday Superhero is back - with the announcement of the ‘Find Your Power Challenge’ taking place 29 May-05 June 2021. Partnered with Marvel’s #FindYourPower, a campaign that showcases the everyday superhero powers we all hold within and to inspire confidence within the next generation, the event will see approximately 3,000 ‘superheroes’ take part in a virtual ‘race to the Avengers tower and back’ covering a total distance of 50,000km.
Led by a group of celebrity captains to be announced in due course, participants will be divided in five Marvel-themed teams and can take part however they choose, with no restrictions on equipment. With a roadmap out of lockdown now in place there is a light at the end of the tunnel for this group and the Find Your Power Challenge will empower those who have struggled to powerup and work towards a common goal. Figures show that twice as many people with disabilities felt the pandemic greatly reduced their ability to do physical activity,
THE FIND YOUR POWER CHALLENGE!
WHEN: 29 MAY TO 5 JUNE 2021 WHERE: HOMES AND NEIGHBOURHOODS AROUND THE GLOBE!
compared with non-disabled people. A study commissioned by Activity Alliance reveals that sport and physical activity among the UK’s 14.1 million people with disabilities has significantly decreased and 39 per cent have done no activity at all during lockdown. Although overall figures look bleak, Superhero Series bucked the trend with its biggest year to date with two ‘At-Home’ events in partnership with Marvel, that saw a record 7,000 Superheroes and Sidekicks rise to the challenge. “The tremendous response to our ‘At Home’ events show how much opportunities like these are wanted and needed,” says Superhero Series founder and Paralympian Sophia Warner. “We’re super excited to be able to reunite with Marvel to give our growing community another incentive to get active and kickstart new sporting passions. Marvel and Superhero Series share the same belief that everyone has their own unique powers, and we cannot wait to see them unleashed!” Entrants are given the freedom to set their own tracked challenge and can use any type of ‘gadget or gismo’, from powerchairs and adaptive bikes, to canoes and rollerblades to achieve their mission. To ensure the challenge is 100 percent accessible, they can also choose from a range of sensory challenges, such as popping bubbles and fun food tasting tests, or invent their own. Each sensory achievement is simply converted into kilometres
Research shows that 39 per cent of people with disabilities have done no physical activity during the pandemic. In response, Marvel is joining forces with the superhero series to create a one-off, ultra-flexible challenge calling participants with any kind of disability and their family and friends everywhere to ‘find your power’. Each entrant will be put into one of five super teams, led by a celebrity team captain, to virtually race from london to the avengers’ tower in New York and back – a total of 10,000km per team!
towards their mission and will be able to chart their team’s progress on a Super World Map portal. Combining their powers of storytelling and event knowhow, Marvel and the Superhero Series have designed an accessible challenge that encourages Superheroes all around the globe to find their own power. All will each receive a Super Race Pack with a medal, T-shirt and finish line tape to celebrate those all-important finishing moments. To help remove any barriers to entry, Marvel is covering the cost of the Super Race Packs and participants will only be asked to cover packaging and postage to enter (£5 for UK residents and £15 for overseas). “Now more than ever Marvel hopes
to inspire everyday Super Heroes to Find their Power. Through the power of our characters and storytelling we hope to welcome back previous Superhero Series participants, who perhaps may try something new for the event, and of course encourage more people to take part and join in the fun.” Sara Hanson, Director of Enterprise Social Responsibility, The Walt Disney Company EMEA. To find out more and sign up for the Marvel Find your Power Challenge, head to www.superheroseries.co.uk
DISNEY’S SOCIAL PURPOSE As well as being a responsible business, Disney is dedicated to providing comfort and inspiration to those in need and creating inspiration and opportunity for those who want to improve their world. Disney’s partnership with the Superhero Series is an example of how, working with others, we help build emotional resilience. Together we bring the power of our brand, stories and characters to inspire and create Moments that Matter for children and young people when they need it the most. In 2019, we created over 26,000 life-changing moments across Europe. For more information on our programmes and our long-standing charitable partners please visit www.thewaltdisneycompany.eu
Venue to Virtual THE DISABLED LIVING COLLECTIVE Monday 28th June – Friday 2nd July 2021 www.kidzexhibitions.co.uk/venue-to-virtual
ARE YOU SUPPORTING SOMEONE WITH A
disability or additional needs of ANY age? which will feature equipment and information for people who access all of Disabled Living’s services. Venue to Virtual will offer you an opportunity to view the most advanced and individually tailored equipment and services all in one place. As we look forward to Covid restrictions easing further in June, Venue to Virtual will help you to decide which companies you may choose to contact in the future to arrange assessments or appointments.
WHAT IS IT? A FREE week-long virtual event featuring over 50 of the most prestigious and award-winning companies, demonstrating their equipment and highlighting their services.
WHO IS IT FOR? People of all ages with disabilities and additional needs, and the relatives, parents, carers and professionals who support them.
HOW DO I REGISTER?
WHY ARE WE DOING IT? In November 2020 and March 2021 Disabled Living’s Kidz to Adultz team, organised two Venue to Virtual
events specifically focusing on equipment and services supporting children and young adults with disabilities. We were overwhelmed with requests not only from adults with disabilities, but also the professionals who work in adult services for a Venue to Virtual with adult equipment. The team love a challenge and are delighted to bring you our next Venue to Virtual event, The Disabled Living Collective,
To keep up to date with the latest news on Venue to Virtual – The Disabled Living Collective, please register now.
STARLIGHT CHILDREN’S FOUNDATION OVER 12,000 CHILDREN ARE ADMITTED TO HOSPITAL EVERY DAY IN THE UK, AND THEY ALL NEED PLAY AND DISTRACTION, WHICH ARE CRUCIAL FOR THEIR SOCIAL AND EMOTIONAL DEVELOPMENT
tarlight Children’s Foundation is the national charity that aims to provide vital play in hospitals for every child. Having access to play in hospitals is key in aiding recovery, alleviating anxiety, and making fun possible in the most unlikely circumstances. Starlight provides hospital services, bringing play and entertainment to children receiving treatment and staying in hospital. Life in hospital isn’t easy, especially when you’re young. It can not only be scary and
isolating but during the pandemic there are heightened anxiety levels with unfamiliar wards and staff in additional PPE. Starlight provides boxes to hospitals filled with games designed to distract and aid recovery. Distraction Boxes contain toys and games specially chosen to ease children’s fears when they are worried about medical procedures. Boost Boxes contain toys, games and art materials from stress balls to slime, playing cards to puzzles, to help children laugh and learn while in hospital. Research shows that there is a disproportionately higher number of children and young people living in deprivation admitted to hospital than the general population. This group of children are also more likely to experience the long-lasting effects of hospitalisation than other
children. That’s why it’s so important that Starlight has a particular focus on reaching hospitals in these areas of the UK to ensure play is available to all children, irrespective of their backgrounds. Despite the pandemic, Starlight hopes to distribute even more boxes over the next 12 months and has created new storytelling boxes, seasonal boxes and products that create immersive experiences for children including promotion of physical activities. For more information visit Starlight’s website at www.starlight.org.uk
I'M ONE VERY LUCKY GIRL! an awesome specialised bed from Centrobed
Carmela Chillery-Watson, from Wiltshire, lives with LMNA-CMD which is a progressive muscle wassng disease which weakens every muscle over me aﬀeccng the ability to walk and use her arms and hands. Since her diagnosis aged just three, Carmela and her family have worked endlessly to help fund vital research into potennal treatments and ullmately towards a cure Some of Carmela’s fundraising challenges have included walking a kilometre a day for 30 days and a 100-day ﬁtness challenge to share kilom physiotherapy exercises and inspiraaon. To mark the end of Carmela’s 100-day ﬁtness challenge, Centrobed were delighted to deliver Carmela a bespoke Caribbean Bed, complete with Wonder Woman theme! The Caribbean is a paediatric, fully proﬁling bed that turns, has independent leg movement, and will grow with the child. This specialist speciali bed has a wide range of movements available that can help children reposiion and ﬁnd comfort with minimal intervennon. (An automaac turning system is available)
The Caribbean is suitable for children of all ages, from toddler to teen with a starrng length of 60” growing to 66” then ﬁnally 72”. The Caribbean can have its frame and panels customised to the user’s own personal preferences. Choose the colour and theme to complement any room Carmelas mum, Lucy: ‘Every single member of staﬀ we have spoken to are incredible. They all genuinely have interest in welfare and care and their customer service is outstanding.’
UK's leading manufacturer of bespoke specialist beds & cots. www.centrobed.com t: 01233 635353 e: email@example.com 9
A VERY SPECIAL
journey ON THE 23RD OF MAY 2016 WE WELCOMED AVERY INTO THE WORLD, A HEALTHY BABY BOY WHO LOOKED SO MUCH LIKE HIS OLDER BROTHER LOUIS. HE WAS BRIGHT, ACTIVE, LOVED HIS FOOD, SAT UP INDEPENDENTLY AND ALL WAS GOOD
ut just after his first birthday we began to get concerned that he was missing his gross motor development milestone when he showed no interest in crawling. A friend of a friend worked as a paediatric physiotherapist and suggested we ask for a genetic blood test as there was a small chance it could be Spinal Muscular Atrophy (SMA), a degenerative muscle wasting condition. Avery’s doctor referred us to a paediatric consultant, then followed a summer of misdiagnosis, miscommunication and despair. Avery had tests after tests and in November 2017 we were called into hospital to receive the heart-breaking news that it was in fact SMA Type 2. The consultant described to us how Avery would never walk, was at significant risk of severe complications from chest infections and his life expectancy was late teens. We were offered a glimmer of hope, with a drug called Spinraza that was producing positive results.
Spinraza is administered directly into the central nervous system 3 times a year using intrathecal injection. However, it is one of the most expensive drugs in history, $750,000 for the initial dose and then $375,000 per year for life. Despite cost, the drug was approved and being administered to patients in France, USA, Sweden, Austria, Germany, Italy, Japan amongst many others, but not available in England. We realised we had to begin planning for a very uncertain future and consider how to support Avery living at home, through education, building a career, making friends but not thinking too far ahead. It is difficult to articulate how this situation has affected us as parents. To call it a rollercoaster of emotions seems a dramatic understatement. As you can imagine, we have good days, bad days and some very dark days. We could already see Avery was getting weaker. He could not roll over,
sit for periods of time unaided, and he even struggled to lift a drink to his mouth. So, we looked at the options; the first was to start a new life in France or Italy where treatment was available. Not an easy decision; our eldest son Louis was thriving at school and had a solid group of mates. We also had a strong support network; since diagnosis, our family, friends and local community had rallied round for
us. There were also the practicalities of working and getting support for Avery in a new country. The other option was to gain a place on a clinical drugs trial, so we contacted hospitals in Boston, LA, Liege, Lille, Paris and Milan and started the process. A drug called Risdiplam by the pharmaceutical company Roche had performed well in safety stages. The drug worked similarly to Spinraza, but instead of injections into the spine it was administered orally, just like taking Calpol. But the trial was accepting only 60 type 2 SMA patients worldwide (aged 2–25 years). After numerous emails and phone calls, Avery was invited to take part in screening tests in Milan, but in May 2018, as we were booking flights, we received the devastating news that the trial was now full. However, weeks later, we received a call to say a final place had become available. Avery was subjected to challenging physio, cardio and optical tests administered by clinical staff who spoke little English. He did brilliantly but in Roche’s view he had not followed the correct instructions during the physio test. We and the clinical team argued he was only two years old, and Roche agreed to retest. In August 2018 Lisa and Avery left the family holiday in France and started a journey by planes, trains and automobiles back to Milan. Avery did amazingly and in September became the last and youngest member of the trial.
One last hurdle: a third of patients were to be given placebo, the unlucky ones would however be switched to the drug after a year, so we believed it was worth taking the risk! We had to wait for positive signs and thankfully they came! Within weeks Avery had a new energy and confidence, started to gain weight and it was clear he was gaining strength in his arms and legs, he had a real hunger for life again. By 6 months, Avery could hold his drink, roll over and even use a lightweight manual wheelchair, something we never thought possible! The progress our little guy has
Digging deep in the most desperate of times, not accepting being told no and fighting for treatment has been the most important lesson we have learned and one we hope to inspire in others. There is still a long way to go on our own journey and there are no guarantees. But both for us as parents but more importantly for Avery, it is reassuring he will now have hope, something to work towards and something to fight for. Alex and Lisa Visit our Facebook page: www.facebook.com/SMAType2
made has been stunning and we are daring to believe that one day he might even be able to live a full independent life... The investment of money, time and emotions we and others have put into the trial have now enabled Roche to agree early access for other UK SMA patients. We watch with excitement as the wider community begins to discover the benefits. We face the same frustrations and battle for equipment as all parents of disabled children do. The battles with our local council over house adaptions, the cost of power chairs and mobility support, the inflated prices of special needs equipment – it should not be this way! But Avery is a bright, intelligent boy with a mischievous sense of humour. He constantly lightens our world and brings fun to all that know him. This journey has taught us so much.
NATASHA, DISABLED LIVING’S MARKETING MANAGER, ASKED LISA ABOUT HER EXPERIENCES OF ATTENDING THE KIDZ TO ADULTZ EXHIBITIONS... “We have visited the Kidz to Adultz Middle event at the Ricoh Arena for the last couple of years having been told about it by Avery’s physio. I remember the first year, not long after Avery’s diagnosis, was quite daunting but It opened our eyes to a whole new world of equipment and resources to help us on our journey. We have met so many lovely people, all so helpful and knowledgeable. Avery loved coming along too! An invaluable event that we would recommend to everyone!”
25th may 2021
take action WORLD BEDWETTING DAY IS AN ANNUAL EVENT THAT AIMS TO RAISE AWARENESS OF THE IMPACT OF BEDWETTING ON CHILDREN, YOUNG PEOPLE AND THEIR FAMILIES
edwetting used to be considered a straight-forward condition that would get better on its own with time. However, it is now known that bedwetting after a child’s fifth birthday is considered a medical condition with several underlying possible causes. Bedwetting may affect children’s self-esteem, behaviour, confidence
and emotional wellbeing. It can cause stress for families. Many children need assessment and treatment to become dry at night. For World Bedwetting Day 2021 Bladder & Bowel UK are releasing a series of blogs about bedwetting at https://www.bbuk.org.uk/blog/ and there is more information on Bladder & Bowel UK’s website at
https://www.bbuk.org.uk/bladderresources Other useful websites include the one at www.stopbedwetting.org If your child is affected by bedwetting then use the message of 25th May to take action and speak to their healthcare professional about assessment and treatment.
BEDWETTING ALARMS WERE FIRST USED IN THE EARLY PART OF THE 20TH CENTURY TO LET NURSES KNOW WHEN CHILDREN NEEDED TO BE CHANGED AT NIGHT. WHEN IT WAS NOTICED THAT SOME OF THE CHILDREN BECAME DRY, THE ALARMS WERE DEVELOPED INTO A TREATMENT FOR BEDWETTING
larms continue to be used as one of the first line treatments for bedwetting. Bedwetting is considered a medical problem from a child’s fifth birthday, so long as they have been toilet trained during the day for at least six months. Bedwetting is usually caused by a
child not being able to reduce the amount of urine (wee) they produce overnight, so that the kidneys make more urine than the bladder can hold, and/or the bladder not holding urine as well as it should. All children who wet the bed are unable to wake to full bladder signals.
Children are more likely to wet the bed if they have constipation. This is because the full rectum (the bit of the bowel nearest the bottom) puts pressure on the bladder and reduces the amount of space it has available. Bedwetting is also more likely in children who are drinking a lot before
they go to bed, who are not drinking well during the day, who forget to go to the toilet just before they go to sleep, or who have snacks later in the evening that contain a lot of salt or protein. This is because salt and protein encourage the kidneys to make more urine. Bedwetting alarms are not suitable for all children. An assessment will help identify which children are most likely to benefit from an alarm. They are most successful in children who are bothered by the wetting, and really want to get dry. They also tend to work better for children who have families that can support them. Traditionally alarms were only recommended for those aged 7 years old or more. However, they are an appropriate treatment for some children as young as five years old, as well as for some children with physical and/or learning disabilities. There are two types of bedwetting alarm available. The body-worn alarm attaches to the pyjama top (usually on the shoulder) and has a sensor that should be placed on the outside of close-fitting underwear. The bedmat alarm has a sound box that is placed near the bed and a sensor, shaped like a mat, that goes under the bottom sheet. Both alarms work by making a noise when the sensor gets wet. This is designed to wake the child, although most children need a parent or carer to wake them as the alarm sounds. As the child improves, they should learn to wake quickly to the alarm, be able to finish passing urine into the toilet, wet patches should get smaller and the period of time between falling asleep and wetting should get longer. The alarm requires commitment, as it needs the child to be prepared to wake up when it sounds, get up, try to use the toilet, and then get changed. However, for the right children the alarm can be a permanent solution to the bedwetting. Improvements are usually apparent in the first three to four weeks, with most children becoming totally dry within 2 – 4 months. If none of the progress described above is seen in the first
month of using the alarm, it may not be the right treatment at that time. Therefore, the child’s healthcare professional should be asked for advice and support. Alarms are also helpful for toilet training some children with additional needs, particularly those who do not seem to know when they have done a wee. The body worn alarm sound box can be attached to a child’s clothes on their back (so they do not pull it off), with the sensor on their underwear. When the child starts to pass urine, the sensor will make a noise. This noise alerts the parent or carer, who should then
say the child’s name, the word ‘wee’, or something similar and then ‘toilet’ before taking their child straight to the toilet. This helps the child to associate the bladder sensations with going to the toilet. Alarms are usually available to borrow from the local children’s bladder and bowel service if there is one in your area. Your child’s health visitor or school nurse may also be able to provide more information about them or how to borrow one. Some parents choose to buy their own alarms; they are avoailable online. For more information about treatments for bedwetting visit the children’s bladder section of the Bladder & Bowel UK website at https://www.bbuk.org.uk/bladderresources/ For more information about using an alarm to support toilet training there is a leaflet available at: https://www.bbuk.org. uk/wp-content/uploads/2019/04/ Using-a-wetting-alarm-for-toilettraining.pdf To access all the information leaflets for children’s bladder and bowel issues visit: https://www.bbuk.org.uk/childrenyoung-people/children-resources/ Davina Richardson Children’s Specialist Nurse Bladder & Bowel UK
Medpage MP5-ULTRA bed seizure movement alarm •
COMPLEX EPILEPSY SEIZURES
AIRFLOW MATTRESS SUITABLE
£439.00 with VAT exemption The most advanced seizure movement monitor in the MP5 range. The ULTRA features specialist software programming that accurately detects nocturnal seizure movement from people of all ages who experience non-typical convulsive seizures while in bed. Suitable for complex epilepsy, specialist beds including airflow mattresses The ULTRA is programmed with specialist seizure movement detection modes which can be selected to suit the different type of seizure movement patterns that the user experiences. Myoclonic detection mode can be selected to detect broken periods of movement which can be useful for detecting small cluster seizures or groups of Myoclonic movements. Seizure movement detection relayed to Parent/Carer via radio pager (2 included).
Recording wireless video baby monitor • • • • • • • • •
WIRELESS VIDEO BABY MONITOR AUDIO MONITORING NO NEED FOR WI-FI RECORDING TO SD CARD (32GB CARD INCLUDED) OPERATING RANGE UP TO 100M (LINE OF SIGHT) NIGHT VISION MODE CRY/SOUND DETECTION ALERT BABY ROOM TEMPERATURE REMOTE PAN & TILT CONTROL
EnuSens Enuresis alarm Incontinence alarm system with wireless parent/carer alarm EnuSens ELES-02K1 ✓ Children’s bed wetting alarm ✓ Incontinence detection in the elderly or disabled ✓ Vomit detection (when used inside the pillowcase) ✓ Machine washable, tumble dry safe soft enuresis sensor
World bedwetting day (28th May) Special Offer scan the code Visit our website to see our entire range of home carer support products
Medpage Limited t/a Easylink UK www.easylinkuk.co.uk T: 01536 264 869 15
COME TRUE FOR GRACE SHARON, THE MANAGER AT DRESSABILITY, SHARES WITH US HOW MEETING GRACE ALMOST MADE THEIR VOLUNTEERS INTO FAIRY GODMOTHERS
e met Grace two years ago, initially when her dad brought her in to have a couple of pairs of trousers shortened. Dad tells me that Grace was born with a rare genetic condition called Proximal Femoral Focal Deficiency. Grace’s case is unusual as she has it in both legs rather than one leg and she was born with very small femurs and no hips. Grace also has bilateral talipes (club foot) which is treated via the ponsetti method and was due to have more surgery on her foot. As a result of Grace’s disability she had a non-standard body shape, and finding suitable clothing was nearly impossible. The team at Dressability were captivated by Grace’s bubbly personality and the little toy cat she brought with her. Conversations with dad Chris, revealed Grace had lost her mum when she was only a year old and he welcomed any help with her clothing. We had been working with the Make A Wish Foundation at the time and the dresses were displayed in our workshop. Initially, Dressability volunteers
offered to make Grace a party dress to wear at her upcoming birthday party, however, we were so taken with her enthusiasm for life that we ended up making her two dresses. Grace was able to wear one of the dresses to Nanny and Gramps’ wedding anniversary party. Dad says, “Grace spent about an hour on the dance floor, whirling around in her wheelchair.” Dad said in a short film made by
BBC Points West that Grace’s white dress “reminded him of her mum on their wedding day.” Since the film was made Grace came back to be measured up for her first ever school dresses which were altered to ensure they were a perfect fit. Wearing school uniform and ‘fitting in’ is vitally important for children and we were so happy we could help with this. We have continued to stay in touch with the family and more recently adapted a unicorn onsie that Grace had for Christmas by removing length from the legs and re-attaching the cuffs. Being able to wear what every other little girl can wear is what our service is all about. At Dressability we encourage independence with dressing and undressing, ensuring that pride in appearance and preserving dignity are at the heart of everything we do. You can view the story about Grace on our website. Making a little girl’s dreams come true – Dressability. For more information about Dressability visit www.dressability.org.uk
FROM A SCHOOL SWEATSHIRT TO A
designer accessory MARLA, A VOLUNTEER FROM DRESSABILITY, HAD A FABULOUS IDEA WHICH HAS MADE SUCH A DIFFERENCE TO CHILDREN AT A LOCAL SCHOOL
efore retiring, Marla was an SEN Co-ordinator in a mainstream school, supporting children with a wide range of disabilities. Marla was conscious that some children there was a need to wear bibs due to oral secretions or to protect their clothing as they strived for independence to feed themselves. However, the bibs stood out a mile against the child’s school sweatshirt. Marla’s idea was to recycle school sweatshirts, make them into bibs and cravats that would blend in seamlessly to the child’s uniform, preserving dignity and increasing self-esteem. Working closely with the school and parents, Marla put her idea into action and designed a bib and cravat from a school sweatshirt, which was no longer worn. The bibs and cravats are lined with both a layer of towelling, (although this is not necessary as the sweatshirts are made of fleecy fabric)
and a waterproof layer before being backed with a complimentary fabric, edged in bias binding and Velcro attached for easy and safe fastening. Both a bib and a cravat can be made from just one sweatshirt. It could be that they are child specific, or school has a ‘stock’ that could be used for a number of pupils... even out of any suitable unnamed lost property! The idea became so successful it has now extended to pupils from other schools. This is a relatively simple way to discretely maintain a young person’s dignity whilst still allowing them to be independent. An instruction sheet is available on how to make the bibs and cravats, please contact Dressability: firstname.lastname@example.org and visit our website: https://www.dressability.org.uk
ABOUT DRESSABILITY Dressability, a small charity based in Swindon, which provides services throughout the UK, supports the clothing needs of individuals with disabilities and those with limited dexterity. Dressability provide a personal, tailored and bespoke service developing practical solutions to everyday problems. By adapting people’s clothing and not their style, we enable our clients to maintain their independence, and enjoy a sense of wellbeing based on their own personal choice. Our service is provided on a personal basis sensitive to the specific needs of our range of clientele.
– RARE CHROMOSOME DISORDER
UNIQUE IS A SMALL CHARITY, PROVIDING MUCHNEEDED HELP, SUPPORT AND INFORMATION TO FAMILIES WHO HAVE CHILDREN BORN WITH RARE CHROMOSOME AND GENE DISORDERS
ffecting many hundreds of babies every year, these complex conditions are present at birth and caused by parts of one or more of their chromosomes missing, added on or rearranged, as well as changes in single genes. Many are born sick and with severe learning and/or physical disabilities, unable to walk or talk and totally reliant on their parents and carers. This can put lots of stress and strain on their families. Some of those affected, however, have relatively mild or no symptoms and only find out they have a chromosome disorder later, e.g. when they try to have children of their own. Although individually rare, when added together the disorders are much more common; more common, in fact, than even Down’s Syndrome. However, this individual rarity means doctors and other involved professionals often have little knowledge about them, leaving parents feeling distressed, isolated and confused. Imagine having a much longed-for baby, only to receive
an upsetting and confusing diagnosis but being left with many unanswered questions about what this means for their future.
This is where Unique comes in, supporting and informing them, answering many of their questions and giving them the help they
need. Unique’s services include a ’Listening Ear’ telephone and email help service, staffed by an experienced team. It is the first point of contact for parents, carers and professionals. They are able to provide tailored responses and have published a library of more than 300 disorder-specific information guides. Available free of charge they go way beyond the purely medical aspects of each disorder, covering other significant issues associated with it. Unique also have a series of practical guides on topics which are common to many rare chromosome and gene disorders, including behaviour, communication, education, sleep and what happens after you receive a diagnosis. As families can feel very isolated, Unique also run events such as conferences and study days for parents and doctors to learn more about the disorders and family days to bring families together to relax
and have fun. A family matching service puts families in touch with each other for mutual support, so they can help each other through the difficult times. Each family also receives a welcome pack of resources to help them in their daily lives, as well as a regular members’ magazine and support from a network of over 200 local volunteer contacts, helping families in their own area. New technology means lots more chromosome and gene disorders are being discovered all the time. More families than ever are receiving diagnoses and demand for Unique’s services is increasing rapidly. Unique now supports almost 10,000 UK families, part of a global network of more than 22,000. As no other charity does what Unique does to cover such a breadth of rare chromosome and gene disorders, services are under greater pressure than ever before. Unique relies on voluntary donations and
fundraising – much of which is done by the very families who need help and support. For more information about Unique, please visit https://www.rarechromo.org Unique – Rare Chromosome Disorder Support Group Registered Charity in England & Wales, Charity Reg No. 1110661
Connect with Kidz to Adultz on Social Media!
0161 214 4592
Kidz to Adultz Exhibitions, Part of Disabled Living, Registered Charity No: 224742
Four tips FOR HELPING
CHILDREN’S FINE MOTOR SKILLS FINE MOTOR SKILLS ARE ALL OF THE SMALL MOVEMENTS OUR HANDS AND FINGERS MAKE WHEN WE COMPLETE FINE MOTOR ACTIVITIES. DOING UP BUTTONS, SQUEEZING TOOTHPASTE ONTO A TOOTH BRUSH, CUTTING WITH SCISSORS AND HANDWRITING ARE EXAMPLES OF FINE MOTOR ACTIVITIES. IN FACT, ANY ACTIVITY THAT YOU DO WITH YOUR HANDS AND FINGERS IS A FINE MOTOR SKILL 20
ome children have poorly developed or delayed fine motor skills. Or, they may have neurological conditions, such as cerebral palsy, which affect the control they have over the muscles of their hands. This article will explore four strategies you can use to help to support skill development and includes key areas to focus on. A LITTLE BIT ABOUT DEVELOPMENT Whilst the touch sense is fully developed at birth, the brain needs the experience of touch to fully understand touch sensations. As babies start to feel their environment, the brain creates an internal map of body sensations. Initially, babies have very little control over their hands; their first movements are large and poorly coordinated. Then, they start to hold onto large items like a bottle. By the time they are twelve months old, they can pick up small things like a sultana. Another thing that helps to develop the arches of the hands is crawling. The pressure on the hands when a baby crawls, helps strengthen the hand arches. Crawling also helps to strengthen the shoulders and to improve postural stability. Some children of readers of the Kids to Adultz Magazine will have missed out on these developmental milestones and will need additional support to develop their fine motor skills.
Messy play – supporting hand awareness Messy play is a fantastic way to support hand awareness for these children. I know that when occupational therapists take out sand, cornflour and playdough, it can look like we are just playing. However, messy play is a fun and engaging way to help hand awareness and hand eye co-ordination. I expect that readers are already familiar with many messy activities. Water, sand, flour, pasta, beans, cream, cornflour, playdough, ice, foamy soap and slime are all great options. If there is a risk children will put the items in their mouth, make
sure they are edible. Rather than list out all of the potential messy play items, I would like to explore some practical ways of using these activities to help with hand development. USING MESSY PLAY TO HELP FINE MOTOR SKILL DEVELOPMENT • Burying hands underneath – this helps the brain to map the front and back of the hands and also in between the fingers. It also helps with understanding object permanence which is the understanding that something is still there even if you cannot see it. For children who cannot reach down and in, the messy item can be put into a bag and brought up to their hands.
• Squeezing – helps to give the same type of pressure to the palm that crawling does. Water play is a great way to support this. Large car washing sponges and be filled with water and squeezed out. Filled shampoo or plastic ketchup bottles are great fun to squeeze, especially, if you have different coloured water in the bottle (e.g. blue) and the container (e.g. red). Spray bottles are a great option for those children who have the ability to squeeze them. • Filling and emptying – helps with hand eye coordination, shoulder stability and hand strength. This works with water and any loose items, e.g. sand or rice. Small and large containers and jugs can be used. A NOTE ON TOUCH SENSITIVITY Some children find different textures more challenging than others.
Sometimes this is because they have not been able to participate in messy play when they were younger, so they have not had messy experiences. For example, learning to eat solid food is a very messy activity that children of some readers may never have experienced. If there is significant sensitivity, occupational therapists might call this tactile defensiveness. These children can perceive touch sensations which others think are normal as uncomfortable or painful. Their preferences must be respected. It is important that they are never forced to touch items that they are uncomfortable with. Play and gradual exposure to different textures is the strategy sensory trained occupational therapists would recommend. Typically, dry textures are more easily tolerated than wet. Sticky textures (e.g. honey) are usually the most challenging as they are much harder to remove from the skin. If the child demonstrates extreme discomfort with different textures, a referral to occupational therapy is recommended.
Don’t forget finger songs and rhymes Finger songs and rhymes (e.g. Where is Thumbkin?) are also a fantastic way to improve hand and finger awareness. Children of readers may have missed these at the ‘expected’ age, so might need to go back to them when they are able to. Songs that include clapping also help with the coordination of using both hands together.
Cause and effect toys – supporting switch use and communication Whilst cause and effect toys may not immediately seem to fit into an article on fine motor skills, most of these toys have a button or switch which requires some dexterity to operate. For children who will go on to use switches for mobility (e.g. a joystick on a powered wheelchair) or communication (e.g. an AAC), cause and effect toys are the first
ABOUT THE AUTHOR...
step in this journey. They offer an opportunity to understand the relationship between a switch and an action (e.g. I press this button and the piano makes music). And, they are a motivating way to practice fine motor skills and finger dexterity.
Functional skills The final recommendation I have is to start focussing on functional skills from an early age. It will take much longer for a child to do these skills by themselves initially, but without practise they may never learn. There are some children whose neurological conditions do not allow them much functional movement, however for those that can here are some items to start with: • Finger feeding • Pulling a coat zipper down and up • Putting on and taking off a hat • Taking off socks
• Peeling fruit, e.g. clementine, banana • Washing arms and legs in the bath • Using a spoon • Pouring a drink (half-filled 1 pint milk bottles are a good container to start pouring from) • Opening food packets and containers • Buttering bread
Helpline Live chat
Kim Griffin is a paediatric occupational therapist. She has extensive experience working with children who have sensory and/or motor skill challenges, including those with autism and dyspraxia. Her current focus is creating online training and resources for schools, teachers and parents, including training on sensory processing and fine motor skills. www.GriffinOT.com @Griffin_OT @GriffinSensoryOT Fine motor skills are important to support independence, play and learning. I hope that this article has given you some ideas you can use with your child.
College placements for young people 16-25 with complex needs including vision impairment
Free legal advice service
Information / resources Facebook support group We are here to support family and carers of seriously ill children and young adults 0808 8088 100 email@example.com www.togetherforshortlives.org.uk
sensory studio , swimming pool, hydrotherapy pool, outdoor learning spaces , adapted residential accommodation. specialist teaching and support staff including in-house mobility, Braille, nursing, mobility and therapy teams.
Find out more online wescfoundation.ac.uk
Day by day:
IN PARENTS OF DISABLED CHILDREN
JOANNA GRIFFIN, A PARENT CARER AND COUNSELLING PSYCHOLOGIST, GIVES US AN INSIGHT INTO PARENT CARER EMOTIONAL WELLBEING WITH AN EXTRACT FROM HER RECENTLY PUBLISHED BOOK 24
s parent carers, looking after our own emotional wellbeing can be a challenge at the best of times. Living through a pandemic has highlighted the importance of taking active steps to maintain our emotional wellbeing – without guilt on a daily basis. In this article I describe some of the ways that parents can look after themselves. These ideas are based on my research with parent carers and are included in more detail in my new book: ‘Day by Day: Emotional wellbeing in parents of disabled children’. WELLBEING AS BALANCE Life always involves adversity; we cannot escape that. What we do have in our control, though, is how we respond. This includes strategies we develop to deal with challenges and how we look after ourselves. It can be helpful to think of wellbeing as a process of achieving balance. At times there will be more stressors, or difficulties in life, so it’s important we re-gain balance by engaging in more replenishing activities. For example, after a difficult hospital appointment or meeting in your child’s school, making time to talk to a good friend, taking a walk in nature or just sitting and reading a book with a cup of tea can allow us to gain equilibrium. This is an ongoing, dynamic process. Being aware of our own emotions, including knowing in advance that something may be difficult, can ensure we build in a protective cushion around ourselves at these times. WELLBEING INVOLVES BALANCE Below is an overview of some of the strategies parent carers found helpful: FLOW When our attention is entirely focused on the task in hand, we gain a feeling of control that prevents other anxieties entering our awareness. Time flies when we’re truly engaged in something. What this might be is personal to you and
could include gardening, reading or even baking. We often achieve this feeling in creative activities, such as painting or singing, but can also be garnered through work, education or other activities. What can i do? Engage in an activity that fully focuses your attention – a colouring in book or app, yoga or writing a letter. Flow activities tend to help us develop greater skills so doing something that pushes us a little can reap the most rewards.
MINDFULNESS Mindfulness is well recognised as beneficial for wellbeing. Allowing thoughts, feelings and sensations to arise without judgement can help us deal with stressful moments. Noticing how they come and go, much like clouds or waves upon the sand, rather than getting caught up in attempts to remove them. What can I do? There are many mindfulness apps (Headspace, Calm, Be Mindful Online) and the more you practise the easier it becomes, so try to make a regular commitment. Some people find it helpful to set a timer as a reminder. But you can become more mindful without apps or formal classes. It can be useful to start with focusing on your breath. Take a deep breath, count to 4, exhale for 8. Repeat. NATURE You may be able to tap into the same benefits of mindfulness through other ways. Getting out in nature is shown to support our wellbeing
and we can be mindful while taking a walk, noticing the leaves on the trees or listening to the birds. New research suggests that even a small space, such as a tiny front garden or potted plants can have the same effect. The study found that over a period of one year there was a 6% drop in peoples’ stress levels. The researchers state this is the equivalent to the long-term impact of eight weekly mindfulness sessions. The study can be viewed here: https://theconversation.com/greenfront-gardens-reduce-physiologicaland-psychological-stress-149793 What can I do? Connect to green spaces every day. If you have a garden spend time in it. Otherwise buying a plant or flowers can help you engage in mindful appreciation of nature. Bringing nature into your home can also give us a boost. The mental health charity, Mind, recommends collecting natural materials, such as leaves, tree bark or feathers and using them to decorate your living space or create art projects. GRATITUDE AND JOY Human beings have an innate tendency to notice negatives. Spotting dangers was a warning that kept us alive in the past, however, at times it can go into over-drive. The good news is that we can re-train our focus to notice positives, with a little bit of a practise. Positive emotions replace negatives. For example, research suggests that if you smile you are more likely to feel happier. We can also spend time appreciating little moments of joy and connection – with our child(ren), friends (online and in person) and wider community. Although lockdown has been hard for those unable to see friends or family, one of the positives for many people was making new connections – such as helping out neighbours - with whom we were previously disconnected. What can I do? A simple way to start is to write down
or name three things that you are grateful for right now. The food in the fridge, family, health, a sunny day or your friendships. It can be anything – but really inhabit that feeling of gratitude. You can use a gratitude meditation, journal or ritual that encourages you to think about things that you are grateful for on a regular basis.
What can I do? Adopt a compassionate and kind voice with yourself, rather than challenging or criticising. Compassionate breathing can help; taking in one breath for yourself and breathing out for those you care for. You can follow a guided meditation for caregivers by Dr Kristen Neff
COMPASSION Having compassion for yourself and compassion for others are two sides of the same coin. This includes accepting that human beings make mistakes, adversity is part of life and we all struggle at times. Often people find it hard to apply this compassionate approach to themselves. Self-compassion may take a little more practise but it is possible to change inner critical or judgemental voices that many people find detrimental to their wellbeing.
A LITTLE ABOUT THE AUTHOR... Joanna Griffin is a parent carer, Counselling Psychologist and founder of www.affinityhub. uk which signposts to emotional support for parent carers. Her eldest son has cerebral palsy, a learning disability and autism. Her book ‘Day by Day: Emotional wellbeing in parents of disabled children’ is published by Free Association Books on 7th May. And can be ordered here: https://www.amazon.co.uk/Day-Emotional-Wellbeing-DisabledChildren/dp/1911383531
Queen Alexandra College
WHEELCHAIR BASKETBALL ACADEMY
new and exciting fo!r 2021/22
DON’T MISS THE FUTURE ISSUES OF KIDZ TO ADULTZ MAGAZINE...
Photograph by David Dunbar Purple Swan Photography
Queen Alexandra College (QAC) are working in collaboration with University of Worcester and The Albion Foundation to deliver a unique and ground breaking bespoke Wheelchair Basketball sport performance programme. The programme is specifically designed for ambitious young sports people aged 16-24 years who use a manual wheelchair and are eligible under the International Wheelchair Basketball Association (IWBF) classification criteria.
For more details please contact: 0121 428 5050 or firstname.lastname@example.org
QAC: Registered Charity No. 1065794 Registered in England No. 3387540
here: https://www.youtube.com/ watch?v=jJ9wGfwE-YE Supporting our emotional wellbeing is an ongoing, dynamic process. A crucial factor is learning to recognise our own emotions and making time for the strategies that help us, day by day.
As well as being distributed at each of the Kidz to Adultz shows, you’ll find each new issue online, so you can always keep up to date with what’s new and read all the interesting articles. Just visit...
DO YOU WANT TO RECEIVE A COPY OF BBUK’S
‘ Talk about...’ B
ladder & Bowel UK produce a quarterly e–newsletter specifically for people of all ages who may have bladder and/or bowel problems or those who need support with toilet training. This really useful newsletter offers information, advice, practical solutions, product news and a whole lot more. If you would like to receive a free copy please email email@example.com You can look at recent editions of the Talk About newsletter on the BBUK website https://www.bbuk.org.uk/newsletter/
Bladder & Bowel UK National Confidential Helpline Information and signposting to anyone affected by a bladder or bowel problem. Individuals, their families, carers or clinicians may contact our helpline.
Bladder & Bowel UK Just Can't Wait Card Please complete an online request form via the link https://www.bbuk.org.uk/just-cant-wait-cards/ To obtain your free card - please send a stamped address envelope to: Bladder & Bowel UK, 10 Priestley Road, Worsley, Manchester, M28 2LY www.bbuk.org.uk firstname.lastname@example.org
0161 214 4591
Bladder & Bowel UK, Part of Disabled Living, Registered Charity No: 224742
THE TEAM AT KIDZ HQ HAS ACCESS TO OVER 1,500 CHARITIES WHO PROVIDE GRANTS TO CHILDREN AND YOUNG ADULTS. THESE GRANTS RANGE FROM £10 FOOD VOUCHERS TO LARGER CONTRIBUTIONS INCLUDING GRANTS FOR DOMESTIC ITEMS SUCH AS WASHING MACHINES, WHEELCHAIRS AND HOUSING ADAPTATIONS
ia the Equipz helpline we may be able to assist you or your clients to access funds which may be available from: • General Charities • Occupational Charities
• • • •
Charities by Beneficiary Illness and Disability Charities Livery Companies Orders and Membership Organisations
Equipz Helpline 0161 214 4591 or email email@example.com
Newlife: The Charity for Disabled Children – Newlife the Charity for Disabled Children changes the lives of disabled children and their families across the UK by providing specialist equipment through grants, running the UK’s only emergency loan service which aims to get equipment to families in crisis in 72 hours, free loans of specialist sensory toys in Play Therapy Pods, and a free Nurse Helpline to give families vital support and information. To find out more about their services visit www.newlifecharity.co.uk
The Fashion & Textile Children’s Trust (FTCT) is a grant giving trust, which supports the children of people who work or previously worked for a UK fashion and textile company. FTCT grants help to fund therapy, equipment and everyday essentials for children aged 18 years and under, provided their parent or carer has worked for a UK fashion or textile company, for at least one year, within the last nine years. More information can be found at www.ftct.org.uk/about-our-grants
Boparan provide funding to children with disabilities, life-limiting illnesses and those who are in extreme poverty across the UK. Their grants can fund specialist equipment such as wheelchairs, trikes, sensory toys not available on the NHS, and treatments such as a Speech & Language Therapy and Behavioural Therapy. More information can be found at www.theboparancharitabletrust.com/apply
Caudwell Children aim to change the futures of all disabled children by providing access to the services, equipment, therapies and treatments they need. They aim to enable disabled children to lead an active and independent life, reaching their full potential. To apply for support with obtaining specialist equipment for your child, visit www.caudwellchildren.com/apply-support/
Family Fund will look at any grant request that relates to the needs of your disabled or seriously ill child, young person and your family, take a look at their list of grant items to find out more. When applying, think about what would make a difference to you and your child. They consider grant requests in order of priority. If you would like to ask for more than one item, make sure you tell us what is the most important item first. More information can be found at www.familyfund.org.uk/faqs/how-do-we-apply
THE SHAW CENTRE IS AN ACTIVITY CENTRE FOR ADULTS WITH LEARNING DISABILITIES. THE PEOPLE WE SUPPORT HAVE WORKED ALONGSIDE THE STAFF TO PRODUCE THIS MICROWAVE COOKERY BOOK, AND THEIR INPUT WAS INVALUABLE
he microwave cookery book stemmed from the idea of making cooking safe and simple for everyone. For a person with a learning disability preparing a meal brings a sense of independence, it increases their self-confidence and helps them to feel more empowered and fulfilled in their life. However, this book is also an ideal purchase for anyone else who has a busy life and is looking for a simple and practical approach to cooking. All the recipes are made in a
microwave using basic household utensils, for example, a mug and cup measures. There is a conversion chart that can be used if you do not have cup measures at home. By producing this book, we hope to help people with a learning disability live more independently but also, to help people who have limited time and or resources to still eat a healthy well-balanced meal. The book is available from firstname.lastname@example.org at cost of £4.95.
Custom designed, safe, living spaces and beds for people with complex needs.
Versatile, strong environments for safe sleep and relaxation. Ideal for high or low sensory use and the promotion of behaviour self management. Regularly funded through the DFG.
All our products are custom designed and made to meet the needs of individual or multiple users.
Home At Keeping Families Together
Schools In Strong, comfortable and safe high sided beds designed to meet varying nursing needs. Can be used with hoist.
ospital s nH Enabling Treatment for Acute Conditions
Quick assembly safe travel beds for holidays, respite & trips away from home.
Visit our website for our full product range Contact our expert team for purchase, rental and funding options. Call 01706 816274 or email email@example.com
The benefits of dance FOR CHILDREN AND YOUNG PEOPLE WITH DISABILITIES OR ADDITIONAL NEEDS
UNBRIDLED JOY, PALPABLE PASSION AND ENERGY, EFFERVESCENCE ALL FUELLED BY A SHARED LOVE OF DANCE, OF LIVING UNIMAGINABLY FULFILLED LIVES, IN SPITE OF HAVING LEARNING DISABILITIES
here are few people who have disabilities for whom this is normal. But this is the norm at DanceSyndrome where dancers with learning disabilities lead the charge into uncharted waters making waves as they go, welcoming new participants. They leave behind a trail of happiness, disbelief, encouragement for those who experience a very different world, afforded a glimpse of the future where every person is valued, wanted, embraced and respected in
Jess Reid by Brian Slater
an inclusive, diverse society. Dance has the power to transform lives for all who choose to immerse themselves in this way of living, whether you have learning disabilities, physical disabilities, additional needs, or no disability. In 2019, two dancers, Jessica and David, both of whom have Down’s syndrome worked alongside two dance artists to choreograph and perform a duet. It was one of sixteen performances selected for inclusion in the regional event at The Lowry
delivered by young people under 25 years of age, of all abilities. Of those sixteen, only one would represent the North West in the national festival in London. Jess and David’s piece was the one chosen and crucially, feedback from the judges was that disability didn’t feature in the decision making process, they competed on a completely equal footing with their peers and they secured the only place at the national festival! Jess is so proud. “It’s an exciting time for me because I haven’t done this before. I’m really shocked and surprised actually. It was really fun doing it as well and it felt amazing.” David loves to perform, loves leading dance and creating
Jess: “Dance has helped me a lot with confidence. You can make new friends, learn new moves. It’s not always about doing it right… just be yourself, just enjoy it.”
choreography. Give him five seconds of movement and he will creatively expand it to twenty seconds. David is very clear he wants dance to always feature in his life. Dreams really can come true. The dance leaders at DanceSyndrome all have learning disabilities. They lead from the front, they inspire, empower, inform. They work inclusively alongside non-disabled dance artists using a model of co-production. You are entitled to aspire to your dream too. In a diverse inclusive society, every person is an equal, every person is valued and respected for who they are, and every unique individual contributes to the whole. Through dance you can embrace life, kick the stigma surrounding disability into touch, experience social inclusion. It can be accessible, a hobby or vocation, break down barriers considered insurmountable, address issues of identity, nurture real meaningful friendships. Dance and disability can belong together for any of us. Importantly, it’s your choice. Jen (39) is a dancer, has Down’s syndrome. She is coFounder, Director, or as she prefers to be known, the Queen of DanceSyndrome! Jen Blackwell is 21 and has dance coursing in her veins. Dance can open up the world giving purpose to life. It’s why Jen gets up in the morning. Finding her voice through dance has created more opportunities to use
I live for dance. It’s my passion and my life. I have the right to a life of my choosing. My future lies in dance’
verbal communication whether in conversation, interviews, chatting with friends, or speaking at black tie events! Her speech has improved markedly. Living with disability in your family can be tough, often very tough. You can feel left behind, isolated,
Max (4) has Down’s syndrome. He loves co-leading weekly sessions with mum Cristina and learning through dance whether flying like a bird or floating like a cloud.
forgotten. Dance is a language, a place to lose yourself when life gets too much, a powerful way to communicate.
Lucy Burgess by Nicola Selby
“In addition to the well documented benefits of dance for physical fitness, coordination and wellbeing, dance provides young people with rich and varied social opportunities. Meeting new people, working as part of a group and sharing creative ideas are hugely beneficial for young people with learning difficulties. The sense of community that comes with being part of regular dance sessions is just as important as the physical activities themselves,” says Sarah Hawthorne, Director, Primary Dance UK. Something extraordinary is happening. Society is beginning to recognise that every person can contribute in a world when afforded appropriate support and equal opportunity. You can be a dancer, a leader!
ABOUT DANCESYNDROME DanceSyndrome is zooming! We are learning disability led, inclusive, born out of the woeful lack of opportunity for dancers who have learning disabilities to train to become dance leaders. Please check out DanceSyndrome – YouTube for inspiration. For participation opportunities, contact us via social media or www.dancesyndrome.co.uk
Anna by Nicola Selby
Looking forward to connecting!
AS WE MOVE ONE STEP FURTHER TO COVID RESTRICTIONS LIFTING, IT MAY BE NECESSARY FOR SOME PEOPLE TO CONTINUE TO WEAR FACE COVERINGS FOR THE FORESEEABLE FUTURE
ane Weller from Basingstoke is the inspiration behind the development of Clear Mouthpiece Face Coverings and has been recognised for making a powerful contribution to society, the economy and communities. Jane, has been named as one of the UK’s most 100 inspirational female entrepreneurs by Small Business Britain’s f:Entrepreneur ‘#ialso100’ campaign. Jane, who founded Clear Mouthpiece Face Coverings by Clear Expressions in June 2020 due to Covid-19, is being showcased alongside 100 female entrepreneurs from across the UK, as part of the campaign’s recognition of the multiachievements of women that have proved critical to society during the Covid-19 pandemic. Now in its fourth year,
f:Entrepreneur was launched in 2017 to highlight amazing female role models to help and inspire all small businesses, through content, stories and events. It particularly aims to showcase trailblazing female entrepreneurs that lead small businesses alongside a roster of other responsibilities, such as volunteering, mentoring and community support activities. Michelle Ovens CBE founder of the f:Entrepreneur Campaign, highlighted, “Jane was also called out for her speed of action to bring to the fore, face coverings to be used in Low-Risk areas to support the vulnerable to help lip read and see the expressions of the face.” Jane added, “If you can’t see the lips, you can’t here.” This is one of her mottoes, along with “See smiles for miles.” With over 60K dispatched
and more on their way watch this space, and importantly watch out for ‘Clear Expression’s’ at your local Trust Audiology Department or local school. For further information www.clearexpressions.co.uk
The Disabled Living Supplier Directory provides information about companies and organisations that provide equipment, products and services to support disabled children, adults and older people. You’ll find the Supplier Directory on our website www.disabledliving.co.uk
HERE’S THE EASY WAY TO FIND WHAT YOU ARE LOOKING FOR...
Venue to Virtual is back on 28th June, showcasing equipment, products and services to support disabled people of all ages and older people who need a bit of extra help.
Wednesday 17th November 2021 ACC Liverpool NEW VENUE!
Thursday 17th March 2022 Ricoh Arena, Coventry
CANCELLED NOW TUESD AY 17TH MAY 20 22
Tuesday 18th May 2021 Farnborough International Exhibition & Conference Centre, Farnborough
WALES & WEST
CANCELLED NOW THURS DA 7TH JULY 20 Y 22
Friday 25th June 2021 The International Conference Centre (ICC), Newport NEW VENUE!
CANCELLED NOW SEPT 2022
Thursday 9th September 2021 Royal Highland Centre, Edinburgh BACK BY POPULAR DEMAND!
Discover something new
FROM THE COMFORT OF YOUR HOME!
GIVEN THESE UNPRECEDENTED TIMES, DISCOVERING SOMETHING NEW AND EXCITING HAS BECOME MUCH MORE DIFFICULT. HOWEVER, WHILST WE ARE USED TO GETTING OUT AND ABOUT AND PARTICIPATING IN ACTIVITIES FACE TO FACE, THERE ARE STILL WAYS TO HAVE FUN FROM THE COMFORT OF YOUR OWN HOME! READ ON TO DISCOVER SOME FANTASTIC VIRTUAL WORKSHOPS THAT YOU AND YOUR CHILD CAN GET INVOLVED IN MOVEMENT WORKS ‘Movement Works Online’ is currently being funded by Youth UK and they are pleased to be able to offer an inclusive programme of dance and movement classes suitable for a wide age range of young people 0-25 (and their parents/carers). They are delighted to be extending their online offer from
April 2021 with a programme specifically to support children and young people with autism and related differences. This will be a closed group and places will be limited in order to offer a fuller package of support. Webinars, taster sessions and Q&A’s will be available before registration.
The programme is free to access nationwide (at least until the Spring) and can be found here: https://www.movementworks.org/ movementworks-online-sessions/ If you are interested, contact firstname.lastname@example.org
TAILORED LEISURE After the success of their Sit to be Fit at Home classes for adults during lockdown, Tailored Leisure have since received additional funding to further this support to include children and young people to access fun accessible FREE 8-week online boxercise class. The sessions are run by a fully qualified instructor with a DBS check. It is essential that a parent/ guardian is present in each session to support their child. Sessions are via Zoom on Monday afternoons (dates and times to be confirmed upon registration).
For more information, visit: https://tailoredleisure.co.uk/ exercise
MUSIC THERAPY WORKS Music Therapy Works is based in the West Midlands areas, however, Good Vibes Digital Group Drumming Sessions are offered to young people nationwide. A djembe is the preferred participant’s instrument with drums available locally for loan or hire from Music Therapy Works. Inspired by the known positive effects of drumming circles to aid physical, social and emotional wellbeing, the group utilises a fusion of African Drumming
along with Pop Music to provide a positive and creative experience accessible to all. The health benefits and outcomes include well-documented improvements in stress levels, extended social skills, and reductions in feelings of isolation for young people. For more information on Music Therapy Works and the Good Vibes Drumming Group please visit www.musictherapyworks.co.uk or contact operationsmanager@ musictherapyworks.co.uk
BOOGIE MONSTERS Boogie Monsters are a 5-piece pop and rock band who perform fun and interactive chart hits, funky action songs and rocked up nursery rhymes. Kelly, the keyboard player, runs a weekly Zoom song request session where each child gets to choose a song for everyone to have a virtual boogie along to! This is a paid for session, at £5 per household. They also run a weekly free song request session every Saturday at 4pm in their Facebook Group with Kelly the keyboard player and Ben
the guitarist (Boogie Monsters VIP Club). Over half term, they will also be running a free song request session Monday to Thursday at 4pm. The week will finish with a big Zoom party on the Friday at 4pm with a performance of interactive pop and rock tunes and action songs. £5 per household. For more information and tickets, visit: https:// boogiemonsters.co.uk/ upcoming-gigs
Donate to Disabled Living with AmazonSmile
When you purchase items on AmazonSmile, a small donation will be given to Disabled Living at no extra cost to you!
To get started, follow the steps below: Log in to your Amazon account
Search Disabled Living in the ‘Pick your own charity’ bar Select Disabled Living You should receive an email asking you to confirm this Get ready to shop!
equipment and products to make life easier in partnership with ...in partnership with Shop online with Disabled Living for What’s the advantage? equipment and products to make life easier
The best of both worlds...
partnership with The main...in advantage of purchasing via the Disabled What’s the advantage? website, is the online and get free TheLiving main advantage of shop purchasing via the Disabled opportunity for you or your Living website, is the opportunity for you or your professional advice clients clients to speak to to speak to With over 250,000 items in stock at With over 250,000 items in stock at Occupational Therapists or Therapists Occupational competitive prices, weor are offering Continence Specialists for competitive prices, we are offering you choice from a wide range of freeContinence impartial help and Specialists for manufacturers including mobility advice, ensuring you choice from a wide range of aids, daily living products, and unnecessary purchases are help free impartial and continence suppliers together with manufacturers including mobility not made. telecare and telehealth equipment. advice, ensuring aids, daily living products, and unnecessary purchases are continence suppliers together with not made. telecare and telehealth equipment.
www.disabledliving.co.uk/online-shop Telephone: 0161 607 8200 Charity number: 224742
Over 250,000 items in stock at competitive prices
When you shop online with Disabled Living for equipment and products to make life easier you or your clients can speak to Occupational Therapists or Continence Specialists for free impartial help and advice, ensuring no unnecessary purchases are made. Telephone: 0161 607 8200
Large choice from a wide range of manufacturers, including Charity number: 224742
mobility aids, daily living products, and continence supplies Telecare and telehealth equipment
Why not take a look today at www.disabledliving.co.uk/online-shop Telephone: 0161 214 4590 Charity number: 224742
THIS IS WHO WE ARE AND WHAT WE DO…. DISABLED LIVING
A charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled children, adults, older people, carers and the professionals who support them. We have a range of services which you can access via our helpline, through the website or at our Kidz to Adultz exhibitions. www.disabledliving.co.uk
The team comprises occupational therapists, trusted assessors, moving and handling specialists, physiotherapists, nurses and continence specialists. We respond to enquiries via our helpline and website. Some people opt to visit the Disabled Living Centre based in Manchester for a free equipment assessment. Helpline: 0161 214 4590
BLADDER & BOWEL UK
The team provide information and advice for children, young people and adults with bladder and bowel problems. We provide a confidential helpline managed by a team of specialist nurses and knowledgeable information staff. In addition, the website offers a wide range of downloadable free resources. Helpline: 0161 214 4591 www.bbuk.org.uk
KIDZ TO ADULTZ EXHIBITIONS
We organise the largest FREE UK exhibitions totally dedicated to disabled children, young adults, their families, carers and the professionals who support them, with over 100 exhibitors at each event. We currently deliver five events nationally in Coventry, Farnborough, Newport, Edinburgh and Liverpool. www.kidzexhibitions.co.uk
We run a comprehensive training programme for professionals and carers. Most of our courses are accredited by Open Awards and others provide CPD opportunities. Our training courses can be ‘tailor made’ to suit your organisations requirements and can be delivered throughout the UK. www.disabledliving.co.uk/training