Kidz to Adultz Magazine Issue 11

kidz

to

ADULTZ

MAGAZINE

ISSUE 11 / MARCH 2021

IN THIS ISSUE...

WHEN AUTISM BECOMES A SUPERPOWER POSTURAL CARE – NEW REPORT MENTAL HEALTH & WELLBEING FOR CHILDREN & YOUNG PEOPLE SKIN CAMOUFLAGE – MORE THAN JUST MAKEUP KIDZ TO ADULTZ VENUE TO VIRTUAL – AVAILABLE UNTIL END OF MARCH

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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.

PRODUCT AWARDS

WINNER OF EXCELLENCE IN CARING

www.theraposture.co.uk Proud to work with:

Welcome!

WELCOME TO OUR LATEST ISSUE

I

have just sat down with a cup of tea, to put the finishing touches to this first issue of the magazine for 2021 and cannot believe it is twelve months since the onset of the Pandemic. With all the challenges we have faced I would have thought the year would have dragged, but it most definitely has not! The team at Kidz HQ had resigned themselves to the fact there would not be any Kidz to Adultz Exhibitions in 2020, but we really did hope come the new year, we would be giving you good news that it was ‘all systems go’ and we would be back on the exhibition floor. However, that is not to be, so it is important you keep an eye on our website for the most up to date information. In the meantime, what do we have in store…

The first week in March we held another live ‘Venue to Virtual’ event which showcased equipment, products and services from an abundance of companies and organisations. You can still watch all the videos until the end of March and you will find full information on the middle pages of this magazine – take a peek and don’t miss out!

So what else do we have in this edition? We have part one of a three edition feature, highlighting organisations who can provide funding for equipment, holidays and other essentials. There are three amazing articles giving an insight into the lives and achievements of Jordan, Bobby and Jessica. One of our Trustees, has developed a financial product to support people with a disability, so we will introduce you to our colleague, Tippee. Lesley Woolnough, a Skin Camouflage Practitioner gives us an insight into how the application of specialist creams and powders can reduce the appearance of a mark, scar or skin condition. Andrea Chatten, founder of Unravel provides us with her top tips to support a child’s emotional wellbeing. We hear from a number of charities who provide the most fabulous support, so maybe they can help you or the families you work with. This is just a taster, there is so much more…

Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions Disabled Living #kidztoadultz

CONTENTS...

Jessica’s stoma journey...... 4 Posture Positive................... 6 Where there is a will there is a way......................... 8 Cosmopolitan Care: The first ever user led care company...................... 10 Disabled Living Trustee wins banking award........... 16 Mental health & well-being Support............. 18 Venue to Virtual.................. 20 Skiggle.................................. 26 March Madness – free online festival............. 28 My superpower................... 29 SpokeGuards Christmas Wheels competition winner................................... 31 Skin Camouflage: It’s more than just make-up.............. 32 The power of words........... 34 Has your child experienced a change in personality following an illness?.......... 36 Raising awareness of Dravet Syndrome................ 37

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 magazine@disabledliving.co.uk

Disabled Living, Burrows House, 10 Priestley Road, Wardley Industrial Estate, Worsley, Manchester, M28 2LY

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journey JESSICA’S STOMA

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SIX YEAR-OLD, JESSICA, HAS SUFFERED FROM CHRONIC CONSTIPATION SINCE BIRTH. IN 2018, SHE HAD A COLOSTOMY STOMA FORMED AND DEVELOPED DIVERSION COLITIS. JESSICA’S MUM, KIM, TELLS US ALL ABOUT HER JOURNEY WITH APPLE (THE NAME SHE HAS FOR HER STOMA).

J

essica Dowle was born in September 2014. She was three weeks early and weighed 6lb 11oz. Jessica was taken home the next day but still hadn’t passed meconium and didn’t until four days old. However, the midwives were not concerned. After Jessica finally passed the meconium, she suffered with constipation daily and was in so much pain and discomfort. The GP referred her to Alderhey Children’s Hospital for a rectal biopsy for Hirschsprung’s disease, which luckily was negative. But Jessica still suffered daily. She had medication and enemas her whole life, and at the age of two she got put on bowel washout (Quafora Mini System) which her parents have done at home for nearly two years. She has also had anal fissures removed and botox into her sphincter muscle which was effective for about one to two weeks. But then she was in pain again.

In August 2018, the Doctors decided a colostomy stoma would help Jessica and give her body a break from pain. So, on 8th November 2018, two months after her fourth birthday, Jessica had her stoma formed. She was so brave and handled it so well she nicknamed it ‘Apple’. She was back in school three weeks after her surgery.

She accepted her stoma pretty much straight away, but then she started suffering pain again in her rectum which ended up with an admission to hospital. Jessica was given suppositories, pain medication and enemas. This pain

and mucus flared up every few weeks and in May 2019 she was rushed to theatre. It was here that she was diagnosed with diversion colitis, a painful complication from having a stoma.

Things still weren’t great in August 2019. Jessica’s stoma narrowed inside, meaning she would need a refashion of her stoma which she had done in November 2019.

It was another big operation, and it took her two months to recover from it at home. Jessica then had a great six months with only little flare ups of pain. However, in September 2020, she had a big flare up again and continued having pain and inflammation. She is currently undergoing tests and is now on picosulfate, Movicol and short chain fatty acid.

Whilst Jessica has been going through all this, she still smiles and doesn’t let her condition get her down. She also fundraises for a bear named buttony and all the bears Jessica sponsors go to Alderhey Children’s Hospital. Jessica also raises awareness via social media on her “Jessica’s Stoma Journey” Facebook page where she helps children and parents who are living or getting a stoma to build confidence and acceptance.

If you would like to keep up to date with Jessica’s journey, and follow her on Facebook, visit: https://www.facebook.com/ jessicasstomajourney/

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POSTURE

Positive

A COLLECTIVE VOICE TRANSFORMING THE LIVES OF PEOPLE WITH LEARNING DISABILITIES THROUGH EXCELLENCE IN POSTURAL CARE.

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he Posture Positive Collective started as a joint collaboration with NHS England, NHS Improvement, Born at the Right Time and Simple Stuff Works. The Posture Positive 2020 report shares the reality and impact of postural care service provision for people with Learning disabilities amid the Covid-19 pandemic in England. It was written after surveying over 100 people; practitioners, families and people with learning disabilities.

Postural care is defined by Mencap

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Postural care is not nice to have, it’s essential

as ‘using the right equipment and positioning techniques to help protect and restore body shape’

(Mencap, 2010). The Covid-19 pandemic placed an exceptional burden on families and practitioners providing postural care for people with learning disabilities. The study set out to understand the impact of Covid-19 restrictions and propose improvements for the future.

For further information about the collective, how to get involved and to read the report https://www. bornattherighttime.com/posturepositive

Centrobed bed’s that keep growing The brand-new Amazon bed, has all the features of a profiling bed, but has the added advantage of ‘growing’.

Regardless of the height or age of the person, the Amazon will fit and profile in all the correct places.

In addiion to the Amazon, our Quoddy and Caribbean beds also ‘grow’. These beds are fun, vibrant and colourful. Fully bespoke, these paediatric beds do not look like a standard hospital bed. All of our beds can be customised to make each one excepponal.

At Centrobed, we are always seeking innovaave methods to improve our products, to assist evolving medical condiions, promote dignity and comfort as children grow.

All of our beds are designed and manufactured in the United Kingdom. manu

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Telephone Assessments Video Assessments Presentaaons & Home Visits www.centrobed.com t: 01233 635353 e: sales@centrobed.com

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WHERE THERE IS A WILL

there is a way SUMMER 2015 SEEMS SUCH A LONG TIME AGO NOW, BUT DURING THAT SUMMER HOLIDAY, MY SON (JORDI) AND I DISCUSSED HIS NEXT MOVE AFTER HE HAD FINISHED TRELOARS COLLEGE THE FOLLOWING YEAR. HIS WAS REPLY WAS “I WANT TO GO TO UNIVERSITY.” I THOUGHT THIS WAS AMBITIOUS BUT PERFECTLY ACHIEVABLE. THE ONLY STUMBLING BLOCK WAS MAKING SURE HE GETS THE RIGHT GRADES.

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et me let you in to the world of Jordi. He has an undiagnosed muscle weakening condition, his older sister has a similar condition.

They are both nonverbal and power wheelchair users, he needs 24/7 support.

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The academic year 2015/16 was broken into three bite size chunks (terms), we would assess where he needs to step up a gear with his studying at the end of each term.

There were moments where he did indeed need to do this and to his

credit, he really did shove it into top gear - especially in the final term. I thought I would add a little sweetener to boost his work ethic if he needed it, so I told him, if he made it to University I would take him to the Grand Prix in Abu Dhabi in 2016.

Jordi and I must give a huge amount of credit to all the people at Treloars, they really supported Jordi above and beyond the call of duty. Suffice to say he did achieve his grades; he would start University in September 2016 to study Sports journalism at Solent University. So, that meant my credit card took a hammering, in November 2016 we headed out to Abu Dhabi to see the F1 Grand Prix. I pulled a few strings and managed to get us into the paddocks to meet the Sky media team, after the race we also met some of the drivers. However, what happened during that visit to the paddocks was totally unexpected, we were introduced to an F1 journalist called David Tremayne, he enquired about the subject Jordi was studying and then offered to be his mentor through University. It was a wonderful and amazing gesture which David has kept to even as I write this.

As you start that journey to University, there is lots to put in place. First of these is navigating the Student Finance England (SFE) website, hacking into the pentagon is probably easier. Among these tasks were accommodation, PA’s/Carers, computers, printers, replicating his home equipment hoists etc. and of course, the right of passage to Ikea to kit out his room. Jordi boarded at Treloars school/college during the week so was not to be daunted by suddenly leaving home. Although, this was full independence, no staying with dad at weekends or holidays. For him this was to be a breeze.

As he completed his third year, we got some advice on his forthcoming final year from another student, he had just completed his final year and told Jordi “start studying well before you start the final year”. In many ways, Jordi has to do that anyway. Nevertheless, full of verve he hit the ground at full speed and that advice served him well. At the end of his final year, he had achieved a 2:1 in sports journalism and I was one very proud father. Sadly Covid19 scuppered a well-earned graduation

day, but no doubt the university will set up some day in the not too distant future to celebrate that.

Since both my children were very young, I have always told them that despite their disability nothing should stop their dreams and aspirations, but I have always tempered it with a bit of pragmatism.

There are clearly some barriers, but there are also lots of other doors that are open - all you have to do is assess them and unlock them.

If you are reading this and you have a teenager with a disability tugging on your coat tails to go to university, then roll out the red carpet. I know Jordi would tell you it has been one of the best experiences of his life, so much so that in September 2019 he started a two-year course doing a Masters in Broadcast Journalism.

Solent University have been and still

are amazing, they have a dedicated access team who are incredible and always available. If Jordi and I were to offer a small bit of advice it would be do not be afraid to ask.

What about me, the author and dad, how did I cope? Up until he left for Uni our weekends were just me and him, footy, F1, Concerts etc. I also did all his care. Suddenly I am on my own, I have to say it was not easy some days were very emotional.

It took some time to readjust, but re adjust I did.

Chris Wood, a very proud dad!

Chris Wood is founder of Cosmopolitan Care. The first ever user led care company.

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COSMOPOLITAN CARE:

THE FIRST EVER USER LED CARE COMPANY

CHRIS WOODS FOUNDER OF COSMOPOLITAN CARE SHARES WITH US HIS VISION FOR A COMPANY PROVIDING NEXT GENERATION CARE.

C

are Companies are fickle enterprises and come in all shapes and sizes. I should know I have had over 10 years of bouncing from one to another, the bad ones often make news headlines, but overall, most have the best of intentions.

However, during lockdown I took some time out to research what I thought was missing from the world of a care company. The big ones seem to have a good cross section of carers employed at their disposal, the ones that manage funds for a specific client employ no carers/PA’s directly (often in the small print) but aspire to find the carers and PA’s as part of the service. I have used both models and I think they fall into two categories. The larger care companies are more associated with elderly care, and therefore by design offer their client little choice as to the person who delivers the care service directly – although there are exceptions.

Whereas the management companies are typically smaller concerns and will always try to match the client with the carer/PA by way of personal interests that the client desires, ultimately the client is the employer.

I have two young adults both in their mid 20’s who require support, they are both wheelchair users and nonverbal. They both need 24/7

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care, however their care whilst not overly complex they do have specific requirements when it comes to someone supporting them. As both my children have grown up, I have had to learn a huge amount about their medical needs, I can now change most types of catheters, peg feed buttons to name but a few, learnt a bit of physio and the names and uses of various types of equipment. Yet, I have never been medically trained (YouTube helps), I found myself ‘learning on the job’ as they say. Also, any wheelchair user, or parent thereof will know how critical it is to have a set of Allen keys at your disposal!

My conclusion is that you can teach care, but you cannot teach a personality and character, more importantly a PA/Carer of a similar age to the client really offers so much more, in many cases a friendship.

I wanted Cosmopolitan Care to have that approach, but I also want the company to be driven by the very people that use and/or deliver care.

I am fast approaching 60 years of age, so doing care can be physically demanding. Without exception, all the companies I have used over the years have left me as the parent to invariably be ‘the cover’ on numerous occasions. I have also found myself doing the interviews, leg work etc.

I would invite parents who have

found themselves in a similar situation like myself to join me on this venture, after all if we are going to have to nurture our young adults along then we may as well be involved as it will be an inevitability anyway. A consortium of parents using the wealth of talent we have by all those that use and deliver care makes for a behemoth of a movement. Together we can create and evolve a great infrastructure and get remunerated at the same time for our work, use the community to gradually build the foundation so it can carry on generation after generation. I am sure many people reading this are like me, they want as best a future not only for our children but also for our older selves.

For further information visit www.cosmopolitancare.co.uk or email chris.wood@ cosmopolitancare.co.uk

Next generation care.

Driven by the community.

For the community.

Rewarding the community.

The Motability Scheme enables disabled people to lease a new car, scooter or powered wheelchair without the worry of owning and running one. Parents and carers can drive on behalf of the customer.

The vehicle should be used by, or for the benefit of, the disabled person.

Making life easier for disabled people

“We went on our first family camping trip.

Something we couldn’t have done without the new car.”

Sam, Elisabeth’s mum

Who can join the Motability Scheme?

You may be able to join the Scheme if you receive one of the following: • Higher Rate Mobility Component of Disability Living Allowance (DLA).

• Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP).

• War Pensioners’ Mobility Supplement (WPMS).

• Armed Forces Independence Payment (AFIP).

What’s included on the Motability Scheme?

Insurance Breakdown assistance Servicing and repairs

How Motability, the Charity can help We can provide charitable grants for: • Car adaptations to help make travelling as comfortable as possible.

• Vehicle Advance Payments for larger, more expensive vehicles.

• Up to 40 hours of driving lessons, to ensure disabled people have access to driving tuition in specially adapted cars as necessary.

To find out more visit motability.org.uk or call 0800 500 3186

Tyres and battery replacement

To find out more about the Motability Scheme visit motability.co.uk or call 0800 093 1000

Motability is a Registered Charity in England and Wales (No.299745) and in Scotland (No.SC050642). Motability is authorised and regulated by the Financial Conduct Authority (Reference No.736309). All cars, scooters and powered wheelchairs provided under the Motability Scheme are leased to customers by Motability Operations Ltd, who operate the Scheme on a contract basis for Motability. Motability Operations Ltd is authorised and regulated by the Financial Conduct Authority (Reference No.735390).

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We’re the CO Crew and we’re on a mission to protect ourselves and our homes from carbon monoxide (CO)!

Get involved!

We’re Loz and Mimi and we are looking to recruit new members to our crew to learn about and share the dangers of carbon monoxide!

Will you help us to spread the word about carbon monoxide?

Carbon monoxide is a poisonous gas which can be very dangerous and could make you very ill. You can’t see it, hear it, smell it, taste it or touch it and it is called the silent killer.

So, it’s really important that you know how to tell if there is carbon monoxide in your home, and what to do if you do spot it.

Join us to discover what carbon monoxide is, where it comes from, how it can affect your body and what you can do to protect you and your family from this dangerous gas.

Get involved at thecocrew.co.uk

Invite the co crew to your school The CO Crew are keen to teach KS2 children about the dangers of carbon monoxide and we are offering free teacher-led virtual visits to your school.

The session focuses on educating children in a fun and engaging way on the dangers of carbon monoxide, what the symptoms are and also how to stay carbon monoxide safe.

If you’d like the CO Crew to visit your school please get in touch:

thecocrew.co.uk/schools

Parents Connect Supporting parents of disabled children and those with additional needs Parents Connect from Scope is a service to support and connect parents across England and Wales.

We are currently running: • 6-week group Zoom sessions • One-off workshops on a range of topics, including Resilience & EHCPs No diagnosis needed Please complete the online referral form at: www.scope.org.uk/family-services/parents-connect/

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.

Supporting Inclusion

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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 info@safespaces.co.uk

SAFESPACES.CO.UK

DISABLED LIVING TRUSTEE WINS

banking award

WITH A PROPOSAL TO SUPPORT DISABLED PEOPLE

TIPPIE MALGWI, SENIOR BANKING EXECUTIVE AT ARBUTHNOT LATHAM AND TRUSTEE OF DISABLED LIVING SHARES WITH US HIS INSPIRATION FOR THE DEVELOPMENT OF THE ‘SERIOUS LIFE INJURY CARE ACCOUNT’, WHICH LED TO HIM BEING AWARDED THE CHARTERED BANKER INSTITUTE’S YOUNG BANKER OF THE YEAR 2020.

WHO AM I? I am a Senior Banking Executive at the Manchester office of Arbuthnot Latham & Co. Ltd and a trustee here at Disabled Living. Arbuthnot Latham has been associated with banking since 1833 and we offer private and commercial banking, wealth planning and investment management

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services for our clients. We believe in traditional relationship and serviceled banking powered by modern technology. Our personal approach enables us to provide innovative and flexible solutions to help our clients achieve their goals – for business, for family, for life.

WHAT DO I DO? I specialise in providing banking and investment services for individuals, solicitors and court of protection firms catering for serious injury & disabled persons. We do this by providing designated client and court of protection accounts together with wealth planning support to enable

them to manage their finances.

The bank also provides investment management solutions to enable our clients futureproof their funds.

concept account also incorporates a life care planning forecasting tool and investment management advice to enable them plan for the future.

ABOUT THE AWARD? I was named the Chartered Banker Institute’s Young Banker of the Year 2020. The question we were asked to answer was: What idea would you implement in your organization to improve outcomes for customers, colleagues, and communities? This should be consistent with the UN Principles for responsible banking.

I designed and built a conceptual banking solution for people living with serious injury and severe medical conditions called the Serious Injury Life Care account (aka the SILC account), which culminated in me winning the award at the virtual live final back in September. The SILC concept provides the disabled person, deputy, and any associated carers with a one-stop solution for their banking needs. The SILC

WHY DID YOU SIGN UP FOR THE COMPETITION? Responsible banking to me is about making a positive contribution to society, starting with our clients and connections. It is about us bankers effectively cultivating relationships to understand what’s important to our clients and working in their best interests for the betterment of their businesses and the wider society. The SILC account combines the existing service offerings we have at Arbuthnot Latham into one holistic product specifically targeting this vulnerable sector, which

for everyday adventures

is an example of the forward-thinking initiatives championed here at the bank.

WHAT HAVE YOU LEARNT? I’ve learned that I have a duty. Banks & by extension bankers have great power but with that power comes responsibility – I’ve learned that it is up to us as bankers to actively champion positive societal change & this needs to be evident in our values and how we do business with integrity, empowerment and diversity serving as the core principles.

For more information on how Arbuthnot Latham can support you or your client with their banking and financial planning needs, please contact Tippie at TippieMalgwi@ arbuthnot.co.uk

mental health & well-being

SUPPORT FOR CHILDREN & YOUNG PEOPLE

UNRAVEL IS A CHILDREN’S EMOTIONAL & BEHAVIOURAL PSYCHOLOGY SERVICE WHICH HAS QUICKLY BEEN EMBRACED BY SCHOOLS AND PARENTS DESPERATE FOR BESPOKE INTERVENTIONS DURING CHALLENGING TIMES.

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hey recently celebrated their 6th birthday and over that time, have positively supported over 3500 children with a team, who are passionate and committed to improving children’s emotional well-being. Even better, every child has anonymously reported that they have helped them make changes

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for the better. Andrea Chatten founded Unravel, after spending over 25 years working with children’s emotional & behavioural difficulties and has since become the BBC’s go to expert when such issues arise in the news and is also author of The Blinks novels to support children’s emotional well-being. Here she tells

us why a change in mental health support is needed and how you can best support your child.

There has always been a service missing to translate and transform children’s behaviours quickly and to help highlight the relevant issues so each young person can develop positively. Our approach is aimed

at seeing the behaviours that every child presents, as a form of communication and every emotion that we feel is telling the truth.

Punishing a child for feeling and expressing a negative emotion will never resolve the issue. Instead we need to understand, guide and look at the causes that are activating the emotions in the first place. Until we are brave enough to ask, listen and validate a child’s concerns, the volume of the emotions will only ever increase.

The same principles are subtly incorporated into The Blinks books which I developed so that our philosophy could reach more children. Entwined in each story are subtle effective strategies to help understand and move negative feelings forward so that they don’t impact too long on well-being.

The series titles include Worry, Anger, Self-esteem, Sad, Shy and Love. They also tackle other social issues including bullying, bereavement, separation and divorce, school avoidance, elected mutism and running away. Alongside each novel is a Reference Manual so parents, carers and professionals can be one step ahead in nudging their child’s emotional well-being more confidently in the right direction. If you are interested visit www.theblinks.co.uk TOP TIPS TO HELP SUPPORT YOUR CHILD’S EMOTIONAL WELL-BEING Get in sync – emotional connection is key. It is normal to disconnect with our children, life is demanding.

However, when children don’t feel positively connected to us, it impacts

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on their well-being which is often communicated by negative behaviours Communicate as much as possible from as early as possible. Talking with each other is how we learn, and problem solve, and it starts younger than we once thought. If you want to be having meaningful conversations with your teenager’s start being open and honest when they are two or three.

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Listen to what your children tell you – they will teach us.

It can be difficult hearing hurtful things from our children, but they are telling us what they need.

Don’t hear what they say actively listen.

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Avoid general praise – be specific. Avoid using words like good and bad with kids.

This can negatively impact on identity and well-being. Instead reward and praise the action, progress or value. They are less likely to reject this kind of praise and it fosters healthier self-esteem

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Keep reflecting. The only difference between a positive parent and a negative parent is reflection. It certainly won’t stop us making mistakes, but we might make less mistakes and certainly not keep making the same ones!

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Help children to name and claim emotions. Our emotions are designed to keep us alive. We must acknowledge them otherwise the brain will turn the volume up on them meaning we feel emotions much more intensely. Once we name them our brain relaxes in

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the hope, we will then do something about it.

Help your child challenge their worries and fears with evidence. Most of our thoughts are just guesses. Become emotions detectives with your kids and help them to learn that our brain isn’t always our friend.

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Don’t be afraid to show your variety of emotions so that children see that they are normal and that they come and go. Talk about them together and if you have not dealt with an emotion as well as you would have liked, apologise and explain.

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Model the behaviours you want to see in your child. If you are shouting and slamming doors because you are stressed, then they will learn to do the same.

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Check in on your own well-being. If you aren’t feeling great, then neither will your children and vice versa. As parents we must make sure that parenting goes one way and that is from us to them. Invest positively into your children even if you aren’t always feeling it and their behaviour will follow suit meaning you benefit too, win-win.

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If you are interested in how Unravel can help you contact hello@unravelsupport.co.uk or have a look at www.unravelsupport.co.uk and www.theblinks.co.uk

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YOU HAVEN’T MISSED OUT...

JOIN US!

AT THE BEGINNING OF MARCH, THE KIDZ TO ADULTZ TEAM ORGANISED THEIR SECOND VENUE TO VIRTUAL EVENT – ALL SESSIONS ARE AVAILABLE TO VIEW UNTIL 31ST MARCH 2021.

TAKE A LOOK AT LUNCHTIME, IN THE EVENING, AT THE WEEKEND – ANY TIME TO SUIT YOU.

VENUE TO VIRTUAL RECEIVED 11,559 VIEWS, OVER 1.7K VISITORS REGISTERED OVER 3 LIVE DAYS FROM 23 COUNTRIES s

“Really easy to navigate the site and join the event workshop – love the demonstrations”

“Having a virtual option facilitates more people to ‘attend’ and therefore gets products & services known to a wider audience”

“I appreciate the reminder. I have also gone back today and had a look at some other sessions which I missed yesterday”

Click here to register & view

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PROGRAMME MONDAY 1ST MARCH 09:00

THE BOPARAN CHARITABLE TRUST

12:30

PORTLAND COLLEGE

09:30

COSMOPOLITAN CARE

13:00

IRWIN MITCHELL

10:00

CENTROBED

13:30

KINGSLEY NAPLEY LLP

10:30

MEDPAGE LIMITED T/A EASYLINK UK

14:00

WESC FOUNDATION

11:00

MANFRED SAUER UK

14:30

SECOND SKIN

11:30

THERAPOSTURE LIMITED

15:00

AERGO

12:00

CLARKE WILLMOTT

15:30

ASKJULES LTD

Find out more about funding from The Boparan Charitable Trust.

Provide a care service supporting people through further education. This video will outline the user-led expereince.

A demonstration of a selection of our paediatric beds and cots including the new turning bed which grows at three stages, suitable from child to adult.

Showcasing a wide variety of products (Assistive Technology) to aid the care of people living with epilepsy, senility and special education needs.

Our videos demonstrate the urology products we feel would be useful for children and young adults with bladder problems.

Understanding why Theraposture adjustable cot beds are the considered choice for families and healthcare professionals.

Personal Injury Damages – the new landscape for accommodation claims.

Take a closer look at our superb facilities and magnificent surrounding in Nottingham by joining us on our virtual tour.

Information for families on investing, tax wrappers such as ISA’s and pensions and the importance of cashflow planning and goal setting.

Showcasing how specialist legal services can help those needing assistance in managing their financial affairs due to loss of capacity.

An introduction to our amazing campus and information about the support we offer.

An overview of neurological splints and compression garments.

Learn about the key features of Aergo PS and how it helps to manage sitting posture.

Introduction to AskJules and the support provided to our clients so they live a truly independent life with total choice and control.

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PROGRAMME TUESDAY 2ND MARCH

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09:00

CENTROBED

12:30

NATIONAL STAR COLLEGE

09:30

HEREWARD COLLEGE

13:00

DERWEN COLLEGE

10:00

JIRAFFE

13:30

SAFESPACES

10:30

HOME FROM HOME CARE

14:00

BRAINWAVE

11:00

THERAPOSTURE LIMITED

14:30

THE WINGATE SPECIAL CHILDREN’S TRUST

11:30

IRWIN MITCHELL

15:00

CPOTENTIAL

12:00

GRIPABLE LIMITED

15:30

WIDGIT

This video demonstrates Centrobed’s range of bespoke beds and cots which are modular and recyclable.

Look at the facilities. Hereward learners choose a study programme designed to meet their individual needs.

Postural Management Secondary Complications Jiraffe’s National Clinical Training Manager presents education on ‘Postural Management’?

This film highlights how the environments and support packages are tailored to individuals within Home From Home Care.

Understanding why Theraposture adjustable cot beds are the considered choice for families and healthcare professionals.

Find out more about Deputyship. Information if you care for, or support a child who has a degenerative, physical or mental illness, as they transition in to adulthood.

Introducing GripAble! The two in one assessment instrument and training device that entertains while you train.

Take a virtual tour of our National Star College campuses in Ullenwood, Cheltenham, Hereford and Mamhilad in Wales.

Supporting young people with SEND to explore further education options.

Providing an in-depth product demonstration of the Safespace.

Find out more about our online virtual therapy service, delivered by our qualified therapists.

A tour of The Wingate Centre that can cater for the most complex needs.

A one-stop shop of expert led holistic therapy and services for children and young people with movement disorders.

Create symbol materials and visual supports from 100’s of easy-to-use project templates.

RD MARCH 3 WEDNESDAY 09:00

BEYONDAUTISM

12:30

THE MOVEMENT CENTRE

09:30

QUEEN ALEXANDRA COLLEGE

13:00

AMBITO CARE & EDUCATION

10:00

SLATER & GORDON LAWYERS

13:30

BLADDER & BOWEL UK

10:30

FIREFLY

11:00

THERAPOSTURE LIMITED

14:30

SMARTBOX ASSISTIVE TECHNOLOGY

11:30

IRWIN MITCHELL

15:00

DISABLED LIVING

12:00

RAHANA LIFE

We are experts in educating children and young adults with autism.

QAC is a national residential college and charity that supports a diverse range of student abilities and needs aged 16 and above.

Understanding Ultrasound Scanning in Pregnancy (NHS and Private Care).

Find out more about Targeted Training therapy.

A Salutem Company: Introducing Beaumont College’s residential and day programmes.

‘Problems with Poo’ – constipation, toilet training and bowel related problems presented by Davina Richardson.

Toilet training a child with a neurodisability.

Understanding why Theraposture adjustable cot beds are the considered choice for families and healthcare professionals.

March is cerebral palsy awareness month. Join us, to hear Lottie, Josiah’s mum’s experiences from the time her son was born to today.

Assistive technology to help children and adults with disabilities communicate and live more independently.

An overview of Disabled Living services, offering information, advice and practical solutions to what may seem unmanageable problems.

A demonstration of the range of Armon mobile arm supports and devices to help those with weak arms regain arm movement.

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CLICK BELOW TO READ MORE...

kidz ADULTZ

to

MAGAZINE RACK

EVENTS

There will be a Venue to Virtual Event in June with a difference. We have taken onboard all your suggestions for a wider range of equipment, products and services – keep your eye on the website!

LIVE!

WE’RE BACK

NORTH

Wednesday 17th November 2021 ACC Liverpool NEW VENUE!

MIDDLE

Thursday 17th March 2022 Ricoh Arena, Coventry

SOUTH

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!

SCOTLAND

CANCELLED NOW SEPT 2022

Thursday 9th September 2021 Royal Highland Centre, Edinburgh BACK BY POPULAR DEMAND!

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WATERPROOF FALL ALARM • Pendant button with fall sensor • Carer alert via message pager • Suitable for epilepsy day care • Detect falls in the shower

£139.00 (EM300-BC346) MEDPAGE GPS TRACKER • Instantly find a missing child or adult • 2-Way voice calling • 7-10 Day battery life per charge • Fall sensor & SOS calling No subscription or monitoring fees

£70.83 (MMTBV45)

MEDPAGE SEIZURE MOVEMENT ALARM • Rapid bedtime seizure detection • Alert to carer/parent via pager • Under-mattress movement sensor • Manufactured in the UK by Medpage

£170.00 (MP5-UTB)

Carer support technologies Epilepsy Autism Cognition impairment Sensory loss Safety & security New product guide out now

www.easylinkuk.co.uk T: 01536 264 869 25

“ SKIGGLE – A UNIQUE CHARITY PROVIDING HELP AND SUPPORT TO DISABLED PEOPLE, THEIR FAMILIES, AND CARERS OF ALL AGES.

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o-founded by Christine Singleton and Helen Taylor, Skiggle operates a round-theclock emergency SOS alert service, an online marketplace where people can safely donate and share care products and equipment, and a forum offering help and advice.

Skiggle was founded in 2016 after Christine found herself miles away from home without the specialist food her disabled son, James, needed to survive. Realising what a lifesaver it would have been to have had someone close by to help, the idea of Skiggle, and the innovative

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UK-wide emergency alert system was born.

Now a rescue service for the disabled world, Skiggle’s growing community of more than 7,000 people step up to help each other with vital pieces of equipment and care products. The charity’s goal is to grow to a point where, regardless of where in the UK you may be, help will never be more than 10 miles away. Skiggle is there to make sure life comes before a disability.

In the event a child needs to use the SOS service or access products or equipment on the Skiggle

Made a boo-boo and left our pump charger at home, I put out an SOS on Skiggle and a lovely lady came to my rescue within minutes - cannot thank everyone enough it was the difference between a holiday and having to go home.

Ideal place to locate items for disabled kids and adults. Lots of feeding stuff for pegs etc and you can put a plea out if desperate.

”

marketplace on behalf of a parent, movement around the site is fully moderated to keep them both safe, and legal, online.

The charity’s current fundraising campaign, ‘Songs for Shielding’, is helping to raise vital funds whilst putting a smile on people’s faces during these challenging times.

To find out more about the work of Skiggle, to join the community, or make a donation of any size, visit https://www.skiggle.co.uk

QUOTE THIS ADVERT FOR SPECIAL PRICE!

HERE’S THE EASY WAY TO FIND WHAT YOU ARE LOOKING FOR...

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

NEW! Makes every bed a safe bed in 5 minutes – wherever you are CloudCuddle is a unique award winning, lightweight, easily transportable, take anywhere bed surround that can be used on nearly all types of single beds. Attaching the CloudCuddle is very straight forward as is taking it down. It takes up minimal space when packed and can be carried by Motor Vehicle, Plane, Train or Coach with ease. No complicated pole constructions or taking of vital luggage space with large components with this Award Winning product.

AWARD WINNING Strong, Safe & Durable Assembles in 5 mins Disassembles in 5 mins Lightweight – take anywhere Fits to nearly all traditional beds at home and Respite Fits to Community High/Low Beds Fits to Hospital Beds CE marked Class 1 Medical Device

SpaceSaverBeds Tel: 01905 347538 info@spacesaverbeds.co.uk www.spacesaverbeds.co.uk

s s e n d a M h c r a M – FREE ONLINE FESTIVAL

FESTIVAL SPIRIT HAS ORGANISED MARCH MADNESS, A FREE TO ATTEND MUSIC FESTIVAL TAKING PLACE THIS SPRING EQUINOX ON THE 20TH MARCH 2021. THE ONLINE FESTIVAL WILL FEATURE AN ARRAY OF DISABLED AND NON-DISABLED MUSIC ARTISTS, THOUGHT LEADERS, COMEDIANS AND POETS.

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ith self-isolating, shielding measures and the cancellation of festivals the charity ‘Festival Spirit’ have decided to bring the festival spirit into peoples’ homes.

The event is free for all to attend and tickets are now available from www.MarchMadness.co.uk CONFIRMED ARTISTS The first batch of performers and artists have now been confirmed.

Acts range from the rapper Kray-Z Legz to the Olympic gold medalist, Greg Searle MBE. On the first day of Spring, March Madness will provide the full festival experience and a little something for everyone. The festival will feature rap music, dance music,

SK Shlomo will host the March Madness festival

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rock, classical, comedy, poetry and inspirational talks. There will even be ‘Conversations around the campfire’.

Conversations will take advantage of “breakout” streaming technologies.

Conversations will be led by artists and spontaneously devised by festival attendees.

“For the last 10 years our charity Festival Spirit has helped bring people to music festivals who otherwise would not be able to attend. We provide weekend accommodation in a beautiful tent and facilitate people attending by providing hospital profile beds, electric hoists and a range of other special equipment. We even heat the tent to keep us all cosy! People have a great time and make lots of new friends. March Madness was born out of the idea of recreating that special atmosphere, we call the festival spirit, we experience at each festival”.

Steve, Trustee, Festival Spirit ABOUT FESTIVAL SPIRIT Festival Spirit is a charity providing the full festival experience to young people who would not normally be

Greg Searle MBE at the London 2021 Olympics

able to attend and enjoy such an event due to life-limiting illness or disability.

We are passionate about helping people who never thought they could attend a festival safe in the knowledge that they will have the facilities, support and back up necessary for their condition.

Our accommodation on site is an amazing specially adapted marquee with hard flooring, heating and electricity and close to disabled facilities such as showers and toilets.

We provide 'buddies' to assist guests and their carers to get around the festival site and to make the most of the weekend event, see their favourite bands and acts and attend all the other exciting workshops and activities on offer.

r e w o p r e p u s MY

BOBBY TRUNLEY WAS DIAGNOSED WITH AUTISM AT FOUR YEARS OLD. BOBBY STRUGGLED THROUGHOUT HIS LIFE TRYING TO FIT IN, WHILST DEALING WITH BULLYING AND DISCRIMINATION AT MANY LEVELS. LITTLE DID HE KNOW HIS OBSESSION FOR TOY CARS AND SPINNING THEIR WHEELS WOULD BE THE WAY FORWARD TO A FULFILLING AND HAPPY FUTURE. MY SUPERPOWER I was born with a superpower. I didn’t know it for the majority of my life because I thought my Autism was more of a curse than a gift.

I couldn’t get the words that were in my head to come out because when I tried to speak they would come out wrong, so I gave up. I would get angry and frustrated because I couldn’t say how I felt, what I needed

and what I wanted to do. It made me anxious so I would take myself away and find my own world with the things I loved the most, my toy cars.

I had hundreds and I loved them. I loved the ones with the smoothest turning wheels, these were always the fastest. If the wheels turned freely they would shoot across the floor and I would imagine they were on a race track. I spent hours

spinning their wheels, listening closely for the sound which told me the car would be fast. I would then choose the best and the racing would start. I still have every car packed away in the loft. Memories of the many happy hours spent.

Starting school was the hardest thing for me. I didn’t speak well and found it hard to make friends.

Playtime couldn’t come quick

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enough. The toy cars would come out of my bag and the quiet corner of the playground would become my race track. I would spend every school hour dreaming of cars. I couldn’t get them out of my head.

When I was ten I was invited to a karting party, I really wanted to go but I was petrified. When I arrived I became overwhelmed with all the children, the noise inside the building and the smell of the karts.

My senses were in overload and I ran for the door refusing to go back in.

My friend’s mum asked if I could have a go in a kart when all the children were having a break. After much persuasion I went back inside and discovered the very thing I had been searching for. A sense of freedom, calm and control. When the helmet went on my head the noise and the smells faded away. My anxiety calmed and I was able to listen to what I wanted to hear…how to drive that kart. That afternoon I won my first race. Not in my dreams, not with a toy car but with my own skill. I found my courage, I had control and I felt free. I found my superpower and I will never let it go. It’s who I am and what drives me to be the best I can be.

Secondary school passed in a haze of anxiety. There were bullies, there was pressure and there was a deep sadness that I would never fit in. College was pretty much the same but I passed my Level three motor vehicle studies despite my dyspraxia. Unfortunately I haven’t been able to find employment within the motor vehicle industry because my dyspraxia makes me too slow and clumsy with the tools. I’m sure given time and patience I could overcome this but there is too much pressure on employers to get jobs done quickly, to give me the time.

This is something that needs to be addressed with new initiatives for employers to give disabled people the chance to learn and grow within their chosen careers.

Teachers might have been frustrated with me, the bullies laughed at me but through it all I knew I had something they didn’t.

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I had my superpower. Outside of school and college I was a winner.

I was winning races and making friends because of my racing. To this day I still struggle to talk about many things and finding the right words is still a cause of anxiety to me but when it comes to my racing the words flow. I can listen and learn because my mind doesn’t wander when I’m talking about real racing not just dreams.

I became a five times national kart racing champion. In 2014 I became a Ginneta Junior Scholarship finalist out of 60 participants. I had only sat in the car three times. In 2016 I was awarded the Anna Kennedy OBE Autism Hero Award for Outstanding Achievement in Sport. In 2017 I was awarded the INAP Award for Excellence in sport at the ANCA World Autism Festival in Vancouver and in 2018 I received the Disabled Motoring UK Young Achiever Award.

I specialise in endurance racing because of my ability to consistently put in fast laps within tenths of a second over and over again. I have taken part in many charity kart racing events because people have asked me to be part of their team.

It gives me great satisfaction to be able to use my skills and be part of something which helps others.

It was because of one of the charity kart racing events that I became part of the fantastic Team BRIT.

I was racing in the Damon Hill Karting Challenge in aid of the “Halow Project” when Warren McKinlay who was one of the top racers with Team BRIT spotted me and introduced me to Dave Player the founder of Team BRIT. I was invited for test drive to see if I could become part of the team. I cannot begin to explain how excited I was. I knew I could race a car as I had been a finalist in the Ginetta Junior Scholarship but I also knew that racing a car was beyond my expectations because of the funds and support I would need to compete. To be offered such a chance was an indescribable feeling.

My test day was a success and Dave invited me to join the team.

With the united effort of the whole team in front and behind the scenes, I went on to win four out of five races in my first year racing cars. I am now racing the team’s beautiful Aston Martin V8 Vantage GT4 in the Britcar Endurance Series. All this from the boy who was told he would never be allowed to drive a car on the road because of his autism to where I am today. Never accept the words of doubters. If you know you can do something prove them wrong, find people who believe in you and you will achieve.

Team BRIT is not a charity it is a competitive race team reliant on sponsors and partnerships to enable

us to race. The team have to work tirelessly to earn this support and I have learnt an incredible amount on and off the track with their help and guidance.

I have learnt how to speak and give talks in front of an audience.

The biggest challenge being in 2019 when the team was invited to the British Formula One Championship at Silverstone to share our stories with 1500 guests. I was extremely nervous but I did it. Never in a million years did I ever think I would tell my story at the home of British motor racing in front of some of the most influential people in motorsport. In January this year I took part with my teammate Aaron Morgan in an online talk for a leading global insurance provider with more than 900 employees attending. Aaron and I talked about the challenges we face gaining employment and within the workplace. The feedback from our talks are always positive and I feel we are being listened to and inspiring change. It has spurred me

on to inspire others on the autistic spectrum who are able to be a voice for those who can’t. To be able to give some insight into the challenges we face may help the world to be more understanding and accepting.

To hear from parents of children on the spectrum say I have given them hope for their children’s futures motivates me to be better with my talking each time. Not bad for someone who couldn’t string a full sentence together until secondary school.

My dream has always been to be part of a team and race in the Le Mans 24hr endurance race. This dream is shared with Team BRIT who want to be the first all disabled team to race there. I feel honoured to be part of their journey and have no doubt dreams can come true with hard work, belief and sheer determination, these things all of us in the team share. I do acknowledge I have been very fortunate having such inspirational role models in my life, this is why I am determined not to

waste the opportunities I have been given to enable me to help others along my life’s journey.

I have found my superpower and from my gift I hope to help others find theirs.

Photos: Dave Archer, Kingsize

SPOKEGUARDS CHRISTMAS WHEELS COMPETITION

er! n in w S pokeGuards are pleased to announce the winner of their Christmas Wheels Competition, Adam Salt, his mother Kerry Salt entered the competition on his behalf.

The design of Captain America’s shield was suggested by Adam as he loves superheroes, and because his wheelchair has smaller sized wheels than a standard wheelchair, we had to cut a special size of spoke guards before we printed them. Still, we got them to Adam in time for when this lockdown ends, and he will be able to go out again and show them off in person instead of just on Facebook. www.facebook.com/AdamSalt.

LivingwithCerebralPalsy/ Kerry and Adam and their family are big supporters of

Bluebell Wood Children’s Hospice https://www.facebook.com/ bluebellwoodchildrenshospice/ Find out more about SpokeGuards here: www.spokeguards.co.uk

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: e g a fl u o m Skin Ca P -U E K A M T S U J N A H T E IT’S MOR

SKIN CAMOUFLARGE IS THE TECHNICAL TERM FOR SPECIALIST PRODUCTS THAT CONCEAL ANY DISCOLOURATION OF THE SKIN ON THE FACE AND/ OR BODY. LESLEY WOOLNOUGH, A QUALIFIED SKIN CAMOUFLAGE PRACTITIONER HIGHLIGHTS JUST HOW LIFE CHANGING THIS TREATMENT CAN BE.

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he application of specialist creams and powders, which can be used to reduce the appearance of a mark, scar or skin condition.

“I had a birthmark which caused me lots of embarrassment & distress. I was shown how to cover my mark as if it wasn’t there. I was so happy. Skin Camouflage has changed my life and given me so much confidence” Lisa, aged 20 years.

Skin Camouflage can help with any of the conditions listed below, and many more…

• Acne • Birthmarks - port wine stain • Burns & Self-Harm scars • Vitiligo or loss of pigmentation • Rosacea & Psoriasis • Hyperpigmentation ie melasma/chloasma

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OBTAINING HELP Changing Faces is the UK’s leading charity supporting and representing children, young people and adults who have conditions which affect their appearance. Their team of Skin Camouflage Practitioners run 5 main ‘Hub’ clinics across just England and Scotland and offer advice, information & emotional support. You can self-refer on-line to this free service or talk to your GP or Dermatologist and ask for a referral – www.changingfaces.org.uk Due to the Covid-19 pandemic, all charity and private clinics have paused their Skin Camouflage Services until further notice.

Vitiligo before and after Skin Camouflage

Skin Camouflage Practitioners You can also find private practice Skin Camouflage Practitioners throughout the UK. A paid for consultation takes approximately 2 hours where you talk about your condition and expectations. You will then be taken through the skin matching process to identify the most suitable product and colour.

Once this has been agreed you will be taught: • How to apply the camouflage cream and powder • How to manage it during wear • How to remove to cleanse skin • Where to obtain your camouflage products

In most cases one visit is all you need. You will walk away with the skills and confidence to apply the products yourself.

Choose products that: • Mimic your skin colour as closely as possible • Waterproof - suitable for showering, swimming & sports • Going to last through the day • Non-comedogenic • Non-allergenic • Ranges include Keromask, Covermark, Dermacolour, Veil.

HELPING YOU FEEL MORE CONFIDENT ABOUT YOUR SKIN Skin Camouflage is the technical term for specialist products that conceal any discolouration of the skin on the face and/or body. Skin Camouflage can be used to cover up anything at all that makes part of your skin look different to the rest, however, it cannot be used on broken, inflamed or infected skin.

All of the products used are very highly pigmented, are specifically formulated to last all day, to be water and sweat proof, and they will not aggravate your condition.

Before, during and after applying Skin Camouflage on acne

Skin Camouflage can be used by men, women and children (over the age of 5) and on all skin colours and types. Skin Camouflage creams and finishing powders come in a vast array of shades and colours so they can be matched to an individual’s skin tone. Once applied correctly it will not look heavy or caked-on but give you a natural finish. People will focus on you and not your skin condition, birthmark or scar.

SKIN CAMOUFLAGE CAN IMPROVE QUALITY OF LIFE If a birthmark or other skin condition causes a young person to feel self-conscious, covering it up

with specialist products may help according to 2 studies* of 5-18 year olds. A skin condition can make children and young people feel anxious, depressed, embarrassed or withdrawn, however, when a Skin Camouflage Practitioner applied camouflage products, they felt much better and self-confidence improved.

Researchers found that coveringup skin conditions with these products is not always the right solution for every child. Some found it difficult to apply well but all of them said that knowing that this was an option (something in their tool box) left the child feeling more confident. Using these products is always a personal choice, but in this day of social media dominance Skin Camouflage can often help people feel more comfortable in their skin.

FINDING THE RIGHT PRODUCTS IS ESSENTIAL Do not be tempted to buy a cover-up stick or shop bought make-up it just doesn’t work effectively. The right products make all the difference.

A birthmark called a port-wine stain requires a different coloured product undertone than a birth mark known as cafe au lai spot. It is also important that you (or your child) learn how to apply the products so it looks like your own skin and not make-up. The products can be applied and removed quickly and so it’s up to you how and when you use them. Once correctly applied they can last all day.

About Lesley...

Lesley Woolnough - I am a qualified Skin Camouflage Practitioner and a member of the BASC and hold a CPD accreditation from the Royal College of Nursing (RCN). My passion for Skin Camouflage follows years of personal use for a skin condition. My endorsement of Skin Camouflage and its effectiveness comes safe in the knowledge I have tried and tested this treatment on many NHS and private patients in the East Midlands for over 8 years.

Leg scarring from a car accident

Images with thanks to skincamouflageservices.co.uk

Acne scarring before & after Skin Camouflage

Facial scars from a dog bite

References: Ramien ML, Sandra Ondrejchak S, et al. “Quality of life in pediatric patients before and after cosmetic camouflage of visible skin conditions.” J Am Acad Dermatol 2014;71:935-40.

Tedeschi A, Dall’Oglio F, et al. “Corrective camouflage in pediatric dermatology.”

Cutis 2007;79(2):110-2.

More information British Association of Skin Camouflage (BASC) www.skin-camouflage.net British Association of Dermatologists see https://www.skinhealthinfo.org.uk Skin Camouflage UK - Independent Skin Camouflage Practitioners skincamouflageuk.uk

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THE POWER OF

words

MEET A FEW OF THE BLOGGERS AND WRITERS THE DISABLED LIVING TEAM FOLLOW...

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loggers provide relatable content that many of our readers find useful and insightful. Whether you are experiencing a similar situation or are interested in learning more about a particular topic, they can be a good source of both comfort and entertainment.

If you’re a blog enthusiast or love reading the latest on lifestyle and disabilities, then check out some of our favourite bloggers and writers below!

You can also follow their socials below to keep up to date with their latest news.

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SHONA LOUISE Shona Louise is a disability and theatre blogger, freelance writer and photographer. She’s been documenting her life as a powerchair user living with Marfan Syndrome on her blog for over 9 years and it’s become a platform for discussion around accessibility and disability rights, as well as sharing her love for theatre and photography. Shona is also a published author in the book ‘Rife: Twenty-One Stories from Britain’s Youth’.

You can find Shona at www.shonalouise.com

STEPH’S TWO GIRLS Steph is mum to two girls, Tamsin aged 13 and Sasha aged 11. Steph started writing her blog over eleven years ago, on the day that her youngest daughter was diagnosed with autism. The blog started as an online diary to explain situations and behaviours to friends and family, but over the years has morphed into a website with helpful advice about a less well-known type of autism called Pathological Demand Avoidance.

GEM TURNER Gem Turner is a blogger from West Yorkshire who writes about her experiences of being a disabled wheelchair user, shares top tips on communicating correctly with disabled people, as well as sharing her everyday life experiences as a young disabled woman.

You can find Gem’s blog at www.gemturner.com

Steph works as a trainer for the PDA Society and her blog can be found at www.stephstwogirls.co.uk, her Facebook page is called Steph’s Two Girls, and on twitter and Instagram she is @stephstwogirls

JOANNA GRACE

SARAH ALEXANDER Sarah Alexander is a disability and lifestyle blogger based in Northamptonshire. She lives with her boyfriend and two cockapoos Teddy and George who you will often find on her Instagram (@fromsarahlex).

Sarah is a freelance writer, an extremely passionate activist, and photographer.

You can find her at www.fromsarahlex.com and @fromsarahlex across all social media platforms.

Jo is a sensory engagement and inclusion specialist; she runs The Sensory Projects and through her work seeks to make a contribution to a future where people are understood in spite of their differences. She grew up on a concrete boat her parents built and now lives in rural Cornwall with her husband, two small boys, dog and very old cat. Jo is super active on social media and always welcomes new connections.

You can find Jo at www.thesensoryprojects.co.uk

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HAS YOUR CHILD EXPERIENCED A CHANGE IN PERSONALITY

following an illness?

SINCE THE OUTBREAK OF COVID-19, THERE HAVE BEEN REPORTS OF PSYCHIATRIC AND NEUROLOGICAL CHANGES OCCURRING IN A NUMBER OF THOSE WHO HAVE CONTRACTED THE VIRUS. THIS STRANGE REACTION TO AN ILLNESS IS NOTHING NEW FOR THOSE AFFECTED BY PANS AND PANDAS.

P

ANS (Paediatric Acute Onset Neuropsychiatric Syndrome) and PANDAS (Paediatric AutoImmune Neuropsychiatric Disorder Associated with Streptococcal Infections) are immune mediated conditions which present with neuro-psychiatric symptoms and the result on the sufferer and the family is catastrophic. It is estimated that approximately 1 in 200* children may be affected to some degree, but awareness is limited.

These conditions are caused by a misdirected immune response to a common infection such as strep throat or chickenpox. Affected children can become extremely ill, losing the ability to function normally because antibodies start to attack the brain resulting in a variety of seemingly unrelated symptoms.

Due to a lack of awareness, these children are often misdiagnosed as having ASD, a psychiatric illness or indeed in many cases are just described as naughty children, when

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in reality simple routine antibiotic or anti-inflammatory treatments can resolve all symptoms if the condition is caught early enough.

These conditions are characterised by the sudden onset of obsessivecompulsive disorder (OCD), tics (unusual body jerking and repetitive movements) or eating restrictions (anorexia or ARFID), along with two or more other equally severe symptoms which could include anxiety, depression, insomnia, rage and bed-wetting amongst many others. For more information visit www.panspandasuk.org or email secretary@panspandasuk.org www.pandasnetwork.org/statistics

PANS PANDAS UK is a charity which was established to educate medical professionals and support families around the UK. PANS PANDAS UK work closely with a network of doctors called the PANS Physicians Network who meet quarterly, offering training, sharing knowledge and developing understanding of these complex conditions to ensure treatment of this group of children improves.

RAISING AWARENESS OF

Dravet Syndrome – A RARE EPILEPSY

26TH MARCH IS ‘PURPLE DAY’ - AN INTERNATIONAL DAY FOR RAISING AWARENESS ABOUT ALL FORMS OF EPILEPSY. WE’RE THROWING A SPOTLIGHT ON A RARE AND, SADLY, LIFE-LIMITING TYPE OF EPILEPSY KNOWN AS DRAVET SYNDROME. WHAT IS DRAVET SYNDROME? Dravet Syndrome affects around one in every 15,000 people in the UK, making it one of the most common of the rare epilepsies. In fact, epilepsy is just one of the defining features of this complex neurological condition, which is caused by a genetic mutation in a part of the brain known as the sodium ion channel.

As well as treatment-resistant

seizures (over 90% of individuals are resistant to currently-available treatments), Dravet Syndrome encompasses intellectual disabilities and a spectrum of associated conditions (known as ‘comorbidities’), which may include autism, behavioural problems and difficulties with speech, mobility, feeding and sleep.

Every child or adult with Dravet

Syndrome is different, with some affected more severely than others or with a different emphasis of symptoms. But for all, the condition is complex, symptoms can be

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adulthood, around 50% of individuals with Dravet Syndrome live with severe intellectual disability • Additionally, as children age, they develop a range of comorbidities (which may include autism, behavioural problems and difficulties with speech, mobility, feeding and sleep) • The patterns of seizures remain changeable and unpredictable throughout life, and generally resistant to treatment Note: Some epilepsy medicines are contraindicated in Dravet Syndrome as they can increase or prolong seizures (e.g. carbamazepine, lamotrigine)

interrelated and seizures can be highly unpredictable.

DRIVING DIAGNOSIS THROUGH AWARENESS In recent years, understanding of Dravet Syndrome has increased dramatically. Today, much more recognition is now given to the need to address the comorbidities of Dravet Syndrome, as well as its seizures. Whilst originally seen as a childhood syndrome, there is now greater awareness that Dravet is a life-long condition, affecting adults as well as children.

Although diagnosis rates are increasing, Dravet Syndrome remains under-diagnosed in the UK, particularly among older children and adults. At Dravet Syndrome UK (DSUK), one of our aims is to change this, by raising awareness of the condition and the benefits of diagnosis at any age.

Even in older adults, diagnosis enables earlier and better-informed treatment choices, which may lead to better seizure control, ultimately improving quality of life. A diagnosis

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also means families can access the practical, emotional and financial support provided by DSUK. COULD IT BE DRAVET SYNDROME? Dravet Syndrome is under-diagnosed in the UK. Tell-tale signs that a difficult-to-treat epilepsy might be Dravet Syndrome include: • First seizures appear in infancy (average age of onset is 5 months); they are febrile seizures, usually tonic-clonic (or clonic) and may affect one side of the body (hemiclonic) • Initial seizures are prolonged (lasting more than 5 minutes), recurrent and often triggered by fever • From ages 1-4, different types of seizures emerge; as children become older, nighttime seizures become more frequent • Intellectual disabilities become evident during early childhood, generally emerging between the ages of 12 months to 5 years of age • By the time they reach

TOM’S DRAVET JOURNEY...

Tom is 26-years old and lives at home with his parents, Sue and Adrian, with the support of carers. He had his first seizure when he was just five months old, it lasted 40 minutes and he was unconscious for nine hours afterwards.

From that point on Tom had seizures every few weeks, and they all needed emergency medication to bring them to an end. It was not until he turned 15 years old that Tom was finally diagnosed with Dravet Syndrome, when he had a confirmatory genetic test, showing a mutation in the sodium ion channel gene known as SCN1A. Sue remembers: “I cried because after 15 years I had the answer to that question ‘why?’. Once we had the diagnosis, this opened up a whole new world to us - there was a support group, DSUK, and suddenly Tom wasn’t a one-off with ‘lousy epilepsy’ as his consultant put it, but a whole community”.

Following his diagnosis, Tom spent some time as a residential student at Young Epilepsy (YE). “As parents this was heartbreaking and wasn’t what we wanted for Tom, but we felt that we had to explore the idea”, says Sue. Tom enjoyed YE and stayed until he was 19.

Unfortunately, when he went

onto residential college, he became unhappy, causing an increase in the behavioural problems that teenagers and young adults with Dravet Syndrome often experience. “Tom came home and it took approximately a year for his behaviour to settle down again, resulting in him being assessed as needing 2-1 care”, says Sue. Tom is now happy and active at home and his behaviour is a lot more settled. Fortunately, his family were able to secure a comprehensive care package, which - as many parents of disabled children and adults know - can be challenging. His seizures seem to have settled into a pattern of between one to two a night with a couple of clear nights a week. Apart from his epilepsy, Tom is healthy in himself. He has a mild scholiosis which is neuromuscular, and is just starting on a new physio programme to help keep his back strong.”

Living with a rare condition like Dravet Syndrome can feel very isolating. The support that Tom and his family found in the DSUK community helped to overcome this by putting the family in contact with who really understand because

they are going through similar experiences.

“Once a year there is a Dravet weekend at Center Parcs”, adds Sue. “The first year we went was quite surreal - there were all these children behaving the same way as Tom. It was quite mind blowing to be able to talk face to face with parents who are all experiencing the same things”.

Sue’s hopeful that the family has now gone through their worst times with Tom. “It was very daunting going from childhood services into adult services, but its all do-able”, she says. it’s really rewarding to feel that we might be able to help parents that are just starting off on the Dravet Road, which we can do through the Dravet community supported by DSUK”.

OUR DRAVET SYNDROME COMMUNITY DSUK is the only UK organisation dedicated to improving the lives of those affected by Dravet Syndrome.

We do this through providing support, driving education and funding medical research.

We currently support around 500 families in the UK, but we know there

are many more out there. If you or someone you know has a Dravet diagnosis, and whether you’re just at the start of your Dravet journey or have been living with this condition for many years, we’d love to hear from you.

Joining our Dravet community gives access to the comprehensive range of emotional, practical and financial support services that we provide to families affected by Dravet Syndrome, including our private Facebook group & Family Support Manager services, Seizure Monitor Fund & other grants, our Annual Family Weekend at Center Parcs, Parent/Carer conferences & webinars, Super Siblings Awards and much more.

Find out more about Dravet Syndrome, including how to join us, at our website www.dravet.org.uk or find us on Facebook at @dravetsyndromeuk

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Disabled

LIVING

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

EQUIPZ

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 5 events nationally in Coventry, Farnborough, Newport, Edinburgh and Liverpool. www.kidzexhibitions.co.uk

TRAINING

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