Enable Junior 2019

2019

The UK’s leading disability and lifestyle magazine

enablemagazine.co.uk

FLYING THE NEST

jju junior uniio or

How to encourage your child to flourish into adulthood

AUTISM AND ME

Christine McGuinness gets honest about raising her children

REACHING THEIR POTENTIAL

BUILDING RELATIONSHIPS

Overcoming the hidden equipment crisis with Newlife's campaign

Tackling social isolation and forming friendships, one block at a time

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dive into the deep! for a day out to remember

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Welcome

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Hello, this is the first issue of Enable Junior

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arenting is a rollercoaster, that’s a fact. And there is no step-bystep guide on doing it correctly – we’re all striving to do our best. When it comes to parenting a child with a disability, there is a lot more to consider and many times speaking with other parents is the best way to get the most comprehensive advice.

I spoke with Christine McGuinness, on page 5, about raising her autistic children and why she is promoting improved education on disability. Plus, staying safe at home to sending them off to higher education: we’ve got you covered.

I hope you enjoy the magazine.

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Subscribe

Lorne Gillies, Editor

Subscribe to Enable Magazine, the UK’s leading disability and lifestyle title, and never miss out on the latest news, reviews and interviews. www.enablemagazine.co.uk

What’s inside Interview

PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Lorne Gillies lorne.gillies@dcpublishing.co.uk STAFF WRITERS Emma Storr emma.storr@dcpublishing.co.uk Saskia Harper saskia.harper@dcpublishing.co.uk DESIGN AND PRODUCTION Lucy Baillie lucy.baillie@dcpublishing.co.uk SALES Marian Mathieson marian.mathieson@dcpublishing.co.uk Louise Anderson louise.anderson@dcpublishing.co.uk ENABLE MAGAZINE www.enablemagazine.co.uk

DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007 ©DC Publishing Ltd 2019. All rights reserved. No part of this publication may be reproduced or used in any way without prior written permission from the publisher. The views expressed in this magazine are not necessarily those of DC Publishing Ltd. The publisher takes no responsibility for claims made by advertisers within the publication. Every effort has been made to ensure that information is accurate; while dates and prices are correct at time of going to print, DC Publishing Ltd takes no responsibility for omissions and errors.

5 “EVERY SINGLE DAY THEY AMAZE ME” CHRISTINE MCGUINNESS Christine gets honest about parenting her autistic children.

Voices 30 CREATING TECH 4 GOOD Mihika Sharma shares her passion for technology.

Spotlight 14 TRANSITION TO ADULTHOOD Top tips for independence.

Support 9 SECURING SUPPORT The guidance on offer to you.

10 A GOOD NIGHT’S SLEEP How to manage sleep at home.

Care 17 BUILDING RELATIONSHIPS An expert gives her advice.

29 WHY VOLUNTEER? One volunteer shares her journey of giving back.

Life 13 PRODUCT ROUNDUP The latest products on the market.

21 TIME TO GET SOCIAL Get outdoors with our accessible groups, facilities and more.

Education 24 EDUCATION FOR EVERYONE How do you decide between SEN and mainstream schooling?

26 STEPPING INTO UNIVERSITY Heading to uni? One student shares your must know tips.

In Association 18 REACHING THEIR POTENTIAL Newlife’s work to solve the equipment crisis.

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PIC: © @MRSMCGUINNESS

interview

CHRISTINE MCGUINNESS

“Every single day they amaze me” Speaking with Lorne Gillies, Christine McGuinness gets honest about parenting autism

R

aising three children, Christine McGuinness and her husband Paddy are just like any other parents: striving for their children to flourish.

But, at the age of three the future looked uncertain for twins, Penelope and Leo, who were diagnosed as autistic.

REVEALED

“To be honest, we weren’t expecting it,” explains Christine, who hadn’t considered her children were on the autism spectrum. Sensitive to noise and walking on their tiptoes, although the signs were evident, Christine and her husband didn’t know that it symbolised autism.

She continues: “It came to the point where we were both told the twins were autistic, and we were just so shocked.

We had absolutely no idea what autism

was and what it meant for us as a family.

We didn’t know what the future would hold; at that point we didn’t know if they would ever speak.”

After the initial diagnosis, the family went through some challenges adapting to the news. Unfortunately, it is not uncommon to receive negative stories or experiences of raising autistic children, and this affected how both Christine and Paddy learned about the condition.

However, now an advocate for autism awareness, Christine was determined to research all she could.

EXPERT

“I instantly wanted to know everything and become an expert,” says Christine.

“I wanted to do all the courses and research because I wanted to know everything I could about my children.”

And now, Christine has taken her experiences to share the realities

of raising autistic children. After all, knowledge is power.

“What I have found which will help them in the future is everyone else understanding. Now, we can’t go and educate the whole world – as much as I would love to – but I’m certainly going to try,” Christine enthuses passionately.

“If I can teach one person about autism I certainly will try. I would rather people come and ask me about the children, instead of stopping to stare, because that won’t get us anywhere. If we talk about autism and discuss it, we can change attitudes.

“As a parent, it is difficult, when you know people are staring and assuming your kids are naughty,” she continues.

“It’s hard because you want to stop them and explain what is going on; explain that you can’t stop a child from being overwhelmed or anxious – and that’s normally what autistic children feel.”

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interview

CONNECTION

Using her platform, Christine regularly posts across her social media channels with personal insights into her life with Penelope, Leo and Felicity – who has not been diagnosed as autistic, but the traits are there.

“I get messages everyday thanking me for being open about the children, but it helps me more than anybody else, and I do it for my children,” explains Christine.

“We’ve got a platform and we can talk about it and raise awareness in ways maybe other people can’t. From all the research I’ve done there is no magic wand, pill, medicine, no treatments that will ever get rid of this condition – our children will be autistic adults one day.”

This transparency is integral for others raising autistic children, or other children with disabilities, all the way to raising the profile of disability. Learning your child has a disability can illicit dark times, as Christine and her husband faced.

Reaching out to charities such as the National Autistic Society – who support families after an initial diagnosis all the way to assisting in finding the right school – and interacting with families in similar situations has helped the couple.

As has enjoying the moments when Penelope and Leo thrive.

REWARDS

Through the hardship and challenges, when the twins do reach a milestone the

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rewards make everything worthwhile.

Christine enthuses proudly: “It took a while to get our heads around the fact that, yes, they are autistic but they’re still perfect, fabulous and amazing. This doesn’t mean they can’t do the same as other children, everything is going to take that much longer and that bit more effort. It was difficult at the time but when you get your head around it you do find ways to cope.

“The rewards, when they happen, make it all so worthwhile. Our milestones, for example, when they speak or try a new food – you want to do cartwheels. Others may take this for granted.”

And after six years of planning, the family went away on their first trip together. What would be seen as run of the mill for many other families, going on a plane for the first time took dedicated planning – but it was worth the wait.

“Years ago I thought that was never going to happen because the children never wanted to leave the house, that was their comfort zone,” continues Christine. Having returned from Southampton after visiting Peppa Pig World, it’s a holiday the family will cherish.

And looking back, it was a moment that Christine and Paddy never thought possible. “I wish, back then when we were really quite down, I believed that things would get better,” says Christine.

If we talk about autism and discuss it, we can change attitudes For other families learning about a diagnosis, or adapting to a new life as a parent of a disabled child Christine advises: “Take it one day at a time. It will get easier. It might not feel like it now, but it will. Everything now that seems really, really difficult will become part of your normal day and part of your normal life. Every single day they amaze me. I feel lucky that they’re mine.”

FOR MORE INFORMATION

Follow Christine on social media (@mrsmcguinness) to stay updated on her journey.

Support and guidance is available from the National Autistic Society (www.autism.org.uk) by calling 0808 800 4104

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Securing SUPPORT

Finding information, advice and support can be overwhelming, especially if you are trying to juggle research with caring responsibilities.

We’ve pinpointed essential support on offer, so you can focus on your child

ONLINE With the rise of the internet there are countless resources for parents online. Questions about being a parent carer, your rights and responsibilities, and what support you are entitled to can all be answered online.

The Council for Disabled Children (www.councilfordisabledchildren. org.uk) has a number of resources for parents around understanding the law, what support is available, and where to find more help online.

A number of charities produce information sheets and other resources for parents. Contact (www.contact.org.uk) is a charity for families with disabled children providing news, advice and support through other parents’ experiences.

RESPITE A helping hand or some time out of the house can make a world of difference not only for you or your child, but for the whole family.

Known as respite, there are centres that provide stand in care and shortbreaks for families.

This can be in the form of a paid carer coming into your home for short periods of time, the person you care for being looked after in a short stay care home, or a holiday with or without the person you care for.

These periods of rest help to prevent family breakdown and reduce the stress of care.

Organisations like KIDS (www.kids. org.uk) provide respite services throughout England. The NHS (www.nhs.uk) can also provide respite.

Action for Children (www. actionforchildren.org.uk) have an online search tool to help find services and support in your local area.

SOCIAL As a parent carer it can often feel like you’re alone in your situation.

Meeting other parents can give you someone to talk to who understands your unique circumstances.

Parents Connect is a free service from Scope (www.scope.org.uk/ parents-connect) that supports parents and carers looking after children under 18 with additional needs. Available in London and Leeds, the service allows parents to come together in a safe and supportive space for two hours a week for six weeks. The groups will help you build your support network and learn useful information to support your child.

The National Network of Parent Carer Forums (www.nnpcf.org.uk) connects more than 150 parent carer forums. This resource helps you connect with other parents of disabled children, find information, and keep up to date on any events.

SPECIALIST EQUIPMENT SERVICES WITH NEWLIFE

www.newlifeable.co.uk Specialist equipment is integral for disabled children and young people to thrive. However, it can be costly or unavailable through local health or social care. NewlifeAble exits to fill the recycled equipment gap at providing items at a fraction of the cost For three years, Newlife ran a successful specialist equipment recycling service, NewlifeAble, which was recently taken over by Murrays Medical. Boasting over 30 years’ experience working in the healthcare industry, Murrays and Newlife are ensuring specialist equipment is expertly recycled and refurbished, cleaned, and suitable for any child’s needs.

Families that have paediatric specialist equipment that is no longer required can get in touch via the website.

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A GOOD NIGHT’S

Sleep Many children experience sleep issues – sometimes this stretches into adulthood.

However, for autistic children, falling asleep can be particularly difficult.

Saskia Harper investigates why sleeping can be such a challenge and how parents can ensure a good night’s sleep

S

leep is absolutely necessary for human beings to function: we need it to rest, recharge and ensure we’re raring to go for the day ahead. A lack of sleep can have consequences – particularly if it becomes a frequent occurrence.

Children on the autistic spectrum can often have trouble with winding down and may wake up throughout the night. This can be caused by an increase in anxiety, difficulty understanding social cues (not realising that everyone else in the house going to bed means they, too, need their sleep) or even an irregular secretion in melatonin – the sleep hormone – resulting in an atypical body clock.

Lack of sleep can lead to behaviour issues in children, impact learning and affect mental and physical health.

“My son has never slept well: he was always very restless during the

night,” explains Sarah Smith*. “He slept for short stints, waking repeatedly through the night. He was always on the go which I thought meant he didn’t need much sleep, I never realised it was a sign of sleep deprivation. His daytime behaviour was affected as well as his emotional regulation.”

PARENTS

Children aren’t the only ones that are affected by their lack of sleep: it can also be hugely tiring for parents, and other family members in the household.

“We’ve seen families who have been utterly exhausted, unable to work, lost their homes, relationships have broken down,” says Vicki Dawson, the CEO of The Children’s Sleep Charity (TCSC). “The impact can be absolutely devastating. There’s a strong correlation between depression and sleep deprivation. Mental health can be hugely affected and in extreme

cases, parents can begin to hallucinate and it can even trigger episodes of psychosis.”

Regulating your child’s sleeping pattern is extremely important, not just for your child, but for yourself, too, as Sarah explains: “I could no longer work as I was so tired, I was up and down all night. I felt extremely lonely.

“I was eating sugary foods to keep myself going and then put on weight.

My emotions were all over the place. I dreaded evenings, I stopped going out and lost my friendship group because I had to go to sleep as soon as he did.”

SCHEDULE

A routine can often be hugely important to autistic children in all aspects of life, so it’s important to have a dedicated bedtime routine, too. Going to bed and getting up at the same time every day, even on weekends, can provide stability.

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them to understand what is going to come next. Limiting screen use in the hour before bedtime can be incredibly effective. There is some belief that the blue light from screens can interfere with melatonin production and therefore is best avoided.”

*NAMES HAVE BEEN CHANGED

SENSORY OVERLOAD Starting early in the evening, by eating at the same time, and carrying out similar activities can help, as can limiting screen time in the hours before bed.

Natural changes throughout the year, such as hours of daylight, can disrupt the routine: if it isn’t dark outside yet, your child might not associate this with bedtime. On the other hand, if it’s still dark when they wake up in the morning, they may not be willing to get up and start the day. Items such as blackout blinds, or daylight lamps can help regulate this, when the seasons are working against your favour.

“Trying to work out triggers is vitally important: there may be numerous and this may take some time to work out,” explains Vicki.

A bedtime routine is really helpful to strengthen a child’s body clock.

Doing the same thing at the same time each night before bed will help

Sensory overload can contribute to sleep problems, with light, sound and texture making it hard, if sometimes impossible, to get a good night’s rest for many autistic children.

Making adaptations to your child’s bedroom can also help overcome this, and enable them to associate the room with being a place of sleep. Transforming it into a more comfortable, relaxing place can work wonders, and there are many ways to do so.

Thick carpet, shutting over doors and moving the bed to a wall that is away from the rest of the activity in the house can help reduce noise distractions. Removing labels from pyjamas, duvets, covers and sheets can also help manage sensory overload.

“We kept sleep diaries to establish patterns and worked with our son’s body clock to gently move bedtime back,” Sarah continues. “We also looked at the bedtime routine and

Trying to work out triggers is vitally important: there may be numerous and this may take some time to work out environment to make sure that it wasn’t over stimulating. Every aspect of bedtime was explored and our sleep practitioner from TCSC worked with us to ensure that we had ownership of the routine and it would work for us as a family.”

Sleep is absolutely fundamental to be able to function on a basic level, for children and adults alike. It can be daunting to reach out for help, for fear of judgement. But groups like TCSC will work with you and your child to ensure the whole family can rest easy.

FOR MORE INFORMATION

Connect with parents and sleep specialists by visiting The Children’s Sleep Charity, www.thechildrenssleepcharity.org.uk

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Start a new chapter

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Product Roundup Our top picks of products to promote independence in your child’s development STYLE

POSTURE

WHEELCHAIR GLOVES

BREEZI BYBES

Kiddi Moto, £6.99 www.cheapdisabilityaids.co.uk, 0800 009 6022

BES Healthcare, £220 www.beshealthcare.net, 01179 666 7616

The Breezi is a highly adjustable chair available with a large range of accessories to ensure a child’s posture is well maintained. The Breezi can be used to support children with mild to moderate needs, including those with postural and behavioural difficulties, in both a home and school setting.

HOME

COMFORTNIGHTS BED MATS

Cool, comfortable, and practical: these affordable wheelchair gloves from Kiddi Moto are sure to illicit independence to all young wheelchair users. Wheelchair gloves are imperative to prevent injury or friction caused from wheelchair rims. Velcro straps allow the gloves to be adjusted to fit even the smallest hands.

Coastal Linen Supplies, POA coastallinensupplies.co.uk, 0161 366 0447

The COMFORTNIGHTS range of reusable bed mats offers comfort, quality and reliable absorbency, qualities which has seen it become a leading choice for those looking for premium incontinence bed protection.

All mats are available with or without tucks, are machine washable and can be tumbled dried on medium heat.

MOBILITY

POSTURE

STANDING FRAME

P POD

Smirthwaite, POA smirthwaite.co.uk, 01626 835 552

Smirthwaite has launched a new entrylevel stander for children and young adults requiring low to high levels of postural support. The STA offers both vertical and prone positions along with high levels of adjustment to achieve correct positioning. Pelvic obliquity can also be managed through the pelvic support, which incorporates a derotational feature.

SOS, POA www.specialisedorthoticservices.co.uk, 01283 520400

HOME

Designed and manufactured by SOS, the P Pod has been developed to provide an alternative to wheelchair seating in the home and community.

Its attractive design is available in a bright soft velour or wipe-clean fabric.

Suitable for all ages, it is offered in both standard and custom moulded seating.

COSYSAFE COT

Kinderkey, POA www.kinderkey.co.uk, 01978 820714

Promoting safe sleep, the CosySafe plus is a bespoke cot that can be made to any size your room will accommodate.

With four-part profiling and a height adjustment of 300mm – 800mm it meets the needs of children, adults and their carers. Ensuring a good night’s sleep for everyone.

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Transition to

adulthood

Preparing a young disabled person for adulthood has to begin at a young age celebrating and respecting their hopes and dreams. Emma Storr investigates how to prepare your child for independent living

W

hen you ask yourself what you need to live a happy life the answers are likely to include a job you enjoy, happy relationships and hobbies you love. If you ask a young disabled person the same question, you will receive the same answer.

Barriers and stigma can prevent this becoming their reality and leave an emphasis on services, rather than a young person’s hopes and dreams for their life.

ORGANISED

The first step to helping your child live an independent life is preparation.

This must start from a young age explains Beccy Williams, project manager of Building Bridges (www. buildingbridgesproject.org.uk). The project helps young disabled people engage with their local community, she says: “You are thrown in at the 14

deep end aged 18, and that’s a massive shock. “[People] are told they’ve got the right to do all these things they couldn’t do before: that’s massive, very scary, and difficult if you haven’t done any of these new activities before.”

Beccy’s thoughts are echoed by Mary Reed, business development manager at the Wiltshire Centre for Independent Living (www.wiltshirecil.org.uk). “I think it has to start really young,” stresses Mary. “It’s having those conversations.

We start to talk to young disabled people at 14.”

Both Mary and Beccy emphasise the benefits of viewing the process positively, collecting the young person’s ideas and opinions at every stage. Taking their skills and resources into account can help to decide what preparation is necessary to have a smooth transition into adulthood. This preparation also makes the transition easier for parents

who might be nervous for their child to live independently.

“I think it’s really difficult to take a step back as a parent, and I speak for myself as a parent of a child with a learning disability,” stresses Mary. “I know how terrified I am with him taking risks.”

Parenting is unique to each family, but it can be difficult to let go if you have had to advocate for your child’s rights in the past.

“If parents had to fight really hard to protect their children all of those experiences have an impact on how they help the young person move to independence,” explains Beccy. “It’s preparing those parents and carers for letting go gradually, rather than having a sudden transition.”

PARTICIPATION

Inclusion in the local community is essential in this gradual transition.

People who experience social isolation

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enable

spotlight

Keep talking to your young person and think about the support that enables them to live the life they want to

are more likely to find the move to independence challenging.

“It can be incredibly disjointed going from a close-knit community like a special school to the wider community,” expresses Mary. “They aren’t getting the opportunity to mix with mainstream kids and so when they come out into the blinking sunshine of their community the mainstream kids don’t recognise them.”

Finding out how a young disabled person would like to be included in society starts with asking them. Joining sports groups or social activities in the local community can help build confidence and relationships with nondisabled peers.

“You ask what does a good life look like and none of them mention spending all week in a day centre,” stresses Mary.

“They would love to have a job and go out to the pub with a friend.”

Seeing their peers achieve goals big and small can also act as motivation to

achieve their own dreams, Beccy says: “Within a group if they see one person doing something they think I can do that, I don’t have to live with my parents forever.”

ASPIRATIONS

Each young person is an individual with their own unique view of what will make them happy, but the themes are often the same.

“No one wants to just sit somewhere and be the one looked after, they want to feel they can contribute and that they have a positive role in the world,” stresses Mary.

Encouragement from parents and loved ones can be the difference between a positive and negative experience, Beccy says: “Disabled people don’t have to accept that this is the future: that they’re not going to go to college or do voluntary work, or be in employment.

“It’s about people being able to step into their communities and feel confident in themselves.”

Knowing what services are available, and what your child is entitled to, can help to build this confidence.

“Keep talking to your young person and think about the support that enables them to live the life they want to,” advises Mary. “Think about what you would want to learn and experience at that age.”

Being proactive about your child’s independence, and preparing to transition to adulthood from a young age, can ensure they are ready and most importantly, happy.

FOR MORE INFORMATION

Additional guidance and expert advice on helping your child transition to adulthood is available from: www.councilfordisabledchildren.org.uk or www.ndti.org.uk

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LET’S BE FRIENDS

Building

Relationships H

aving friendships is important for young people to understand the world around them and have good, healthy interactions with people,” explains Roula Carroll, helpline adviser at the National Autistic Society.

“It also enables them to have a good understanding of themselves and supports their development.”

COMMUNICATION

It can be harder for autistic people and people with a learning disability to form relationships and make lasting friendships. This can be caused by a variety of factors, but it can come down to communication.

“Autistic individuals often have different methods of communication,” Roula continues. “It can be difficult to express feelings or ask questions, and listening to the answers of questions can

Autistic individuals often have different methods of communication

Friendships are a crucial part of life. If you think your child is having difficulty building relationships, there is plenty of support out there to help you boost their confidence

be a challenge.”

Though there may be barriers in the way, there are plenty of things parents can do to support their children in making strong friendships.

get a response, that’s a really positive reward and starts the building blocks of communication, which they can transfer to the outside world.”

SUPPORT

As a parent, one of the biggest worries is that your child isn’t happy, but if you think they’re struggling to make friends, there are ways to approach the subject with them, without causing upset.

“Trying to discuss with someone why they’re feeling isolated can be really difficult, but it’s worth broaching the subject delicately,” says Roula. “Think about who the right person to broach the subject is: it could be that it should come from someone who’s more of a friend – an aunt or another family member, or someone who has a similar interest to them, who can find that route of engagement.”

Roula concludes: “It’s a sensitive subject and if you feel your child is slipping out of everyday routine, they need reassurance and comfort. If they’re limiting themselves in interactions with others, stay positive, reward and keep trying to building structure.”

“Increasing structure is a good way of breaking that resistance to engagement,” Roula advises. “Think about personalising your approaches and looking at your understanding of their interests. Investigate activities they can do once a week and increase that activity so you start to build some structure for them: find out their favourite subjects, games and activities, and really engage that by using positive reinforcement.”

The National Autistic Society also runs Parent to Parent – a buddy system, pairing parents around the UK to get advice and support from each other.

They recommend this method of communication as a starting block to encourage children to build up their friendships, too.

“E-befriending is a great way of building communication skills in a secure environment,” Roula enthuses. “It’s not live, so you can revisit it, to tweak the wording. Parents can support their child to help draw out more language. When they send their correspondence and

TALKING

FOR MORE INFORMATION

The Parent to Parent service is available by visiting, www.autism.org.uk

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IN ASSOCIATION WITH NEWLIFE

REACHING THEIR

Potential

Every child deserves the chance to prosper. Newlife the Children’s Charity is one organisation campaigning to overcome the UK’s hidden equipment crisis

E

very day, thousands of children in the UK are put at risk due to a hidden disability equipment crisis which blights the country. Demand for essential specialist equipment is reaching critical levels, but statutory service can’t keep up.

Currently there are in excess of 1.1 million disabled children in the UK. This number continues to grow as survival rates, fortunately, increase.

With this, children with complex needs require intensive support and, importantly, several pieces of specialist equipment.

However, multiple factors – including prohibitive policies, decisions based on frugality, and ‘blanket bans’ by local statutory services – force many children to go without specialist equipment. As a result, children can be left isolated and in great pain.

Newlife is the UK’s largest children’s charity which provides specialist disability equipment such as wheelchairs, beds, car seats, walking and standing frames and communication aids. They’ve made it their mission to tackle the crisis through a targeted and practical fourpoint plan: #fixthefour, in a bid to provide a long-term solution for the equipment crisis.

BLANKET BANS

“‘Blanket ban’ is the term we use when a statutory service refuses to provide a piece of specialist equipment under any circumstances,” explains Newlife’s CEO Sheila Brown OBE. “Blanket bans force health and social care professionals to deny equipment, even if a child has been

18

assessed and confirmed as having a specialist need. A Barrister’s Report in 2018 suggested that this could be unlawful, in many cases, and is simply a way to reduce budgets.”

The forms of blanket bans can vary, but research carried out by Newlife highlights the most common blanket ban across the UK is on specialist car seats.

Sheila continues: “One story which springs to mind illustrating the problem very clearly is the case of Malachi Bartolomeu, who came close to death as a result of a blanket ban in his area on providing specialist protective car seats.”

Living with brain damage and struggling to clear his airways independently, Malachi must continually be supported to avoid secretions being built up in his throat, which could cause choking and vomiting.

A standard car seat simply cannot provide this support. During one car journey, Malachi stopped breathing leaving Malachi’s mum to revive him in front of his siblings. The fear of such incidents means that Malachi’s mum, understandably, avoided taking him out – leaving the family housebound and isolated.

“We are campaigning to end blanket bans and for statutory services to overcome the ‘we don’t do’ mindset,” emphasises Sheila. “Every local authority and health service should have an identified, transparent process for reviewing equipment requests. When a child doesn’t meet this, there needs to be a process builtin for review by clinical professionals, and exceptionality determined via a panel hearing.”

EMERGENCY RESPONSE

Similarly, for five years, Newlife has been running the UK’s only emergency equipment loan service – delivering specialist equipment within 72 hours of a request. The growing demand for this service (up by 45 per cent in five years) highlights the vital lifeline of the service for families.

To support this demand, it’s essential that every integrated equipment store in the UK includes suitable equipment for children in crisis – to ensure that no child is left in danger.

Sheila continues: “Unfortunately, we regularly hear stories about children who have had to go without the right type of bed to keep them safe at night. Or families who have been forced to care for a child at the end of their life from a mattress on the floor.

“Simply put, the equipment crisis is depriving disabled children and their families of the quality of life and comfort that all people are entitled to, and this absolutely must stop.”

WAITING TIME

It is no secret that growing waiting

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No child should be left invisible

Malachi Bartolomeu

times are an issue. Waiting for an essential assessment for equipment is a significant challenge for many families and children resulting in distress and anxiety as many families wait months, in some cases years, for prescribed equipment.

These delays impact on the health, safety and wellbeing of children, with many left in discomfort or isolated.

Sheila adds: “We must fight to make sure a maximum waiting time for assessments is put in place; ensuring no child is forced to endure excessive delays.”

ACCURATE RECORDS

Accuracy is imperative, too. Research has highlighted that approximately 89 per cent of disabled children are missing from local records.

Inaccurate measures mean it’s impossible for health and social care departments to budget appropriately to meet equipment needs, which in turns affects children in need.

“This needs to be addressed urgently, and I think there are several ways to do this,” continues Sheila.

“One way could be for families to be incentivised to sign up to registers

through local attraction passes.

What’s for sure is that no child should be left invisible, and we need a sustainable, long term solution for this issue.”

Off the back of this four-point plan, Newlife is calling on national and devolved governments and local authorities to address each of the four pillars – and work in unison with them to change the Discover lives of some of the more by visiting most vulnerable and newlifecharity.co.uk/ terminally ill children in our society. fixthefour Newlife is also appealing for the public to get behind the campaign by donating to support the vital emergency equipment loan service they provide to so many families across the UK.

Malachi’s mum

Specialist car seat

Newlife always needs supporters to help fill the gap in funding specialist equipment. If you can help please visit newlifecharity.co.uk/ getinvolved

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enable life

Time to get social Seeing your child thriving and doing something they love is one of the most rewarding parts of being a parent. With plenty of accessible groups and clubs around the country providing a chance to exercise, socialise and boost confidence, your child is set to thrive in our top picks RIDING FOR THE DISABLED ASSOCIATION

Various locations, UK www.rda.org.uk

GYMPANZEES

Kingweston School, Bristol 29 July – 23 August Age 0-25 www.gympanzees.org Gympanzee is a social enterprise, striving to ensure every disabled child has access to exercise, friendship and fun. The inclusive leisure centre provides a range of different sessions: loud and busy sessions at which siblings are welcome; and quieter sessions, to reduce the chance of sensory overload.

Prices start at £7 per child, but if you receive certain means-tested benefits, you can qualify for a concessionary rate. For more information, email info@gympanzees.org

“

Sessions aim to improve confidence and independence

“

PIC: © C1 PHOTOGRAPHY

Horse riding has far-reaching benefits – both physically and emotionally. The activity is great for improving muscle strength and balance, while spending time with horses can improve overall mood and reduce stress. The Riding for the Disabled Association have run sessions in venues across the UK for the last 50 years, which are suitable for complete beginners or experienced riders. Sessions are tailored for physical and learning disabilities, and autismfriendly classes are also available. Head to the website to find your nearest group.

PARA DANCE UK

Various locations, England www.paradance.org.uk Dance is a great way of facilitating self-expression, and can be a great lowimpact cardio workout, which improves cardiovascular health and increases stamina. It’s also, simply, a great way of letting loose, socialising and having fun. There are plenty of accessible and inclusive dance groups around the UK, but Para Dance UK is one of the leading providers of classes across the country. Sessions are open to all abilities, and Para Dance UK ensures all venues are completely accessible. Parents, carers and friends are encouraged to come along, to join in the fun and get your groove on.

LEVEL WATER

Various locations, England Age 4-11 www.levelwater.org Swimming is an important life lesson, but it can be tricky to find accessible sessions. Level Water delivers specialist one-on-one lessons for children with physical and sensory disabilities. Instructors will teach how to swim front crawl and backstroke for 15 metres, at which point the swimmer should be equipped with the skills and experience to join a mainstream or local swimming club. The sessions aim to improve confidence and independence in the water. enablemagazine.co.uk

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enable life NEWCASTLE UNITED FOUNDATION KIDS DISABILITY FOOTBALL

Various locations, Newcastle Age 5-16 www.nufoundation.org.uk

BENDRIGG TRUST – INCLUSIVE ACTIVITY FESTIVAL

Saturday 28 September 11am–3.30pm (Quiet hour 10am-11am) www.bendrigg.org.uk/festival

Bendrigg Trust are hosting an accessible activity festival for people of all abilities at their inclusive outdoor residential centre in Kendal, Cumbria. Food and refreshments will be available to purchase on the day. All activities are incorporated in the ticket price, from climbing, zip-wire, caving, tube slide and much more.

Come along with your family, friends or organisation for a fun filled day of inclusive adventures.

THE DEEP

Tower Street, Hull www.thedeep.co.uk Visit The Deep, Hull’s award-winning aquarium filled with family fun. With over 5000 animals, including spectacular sharks and rays, the UK’s only Green sawfish, hundreds of tropical reef fish, Loggerhead sea turtles and a colony of Gentoo penguins: there’s something to entertain all ages.

Don’t miss the Discovery Corner and get hands on with touchpool sessions, see the penguins being fed in the chilly Kingdom of Ice and learn about The Deep’s residents in the daily dive show at 2pm. Finally take a walk through the amazing underwater tunnel and ride in the glass lift through the 10m Endless Oceans exhibit.

The Deep offers a fantastic accessible day out for all, by supporting visitors with additional or access needs. Tools and aids include an access guide, social stories, sensory support packs, free to hire walking aids and wheelchairs, plus, much more. Book your tickets online and save 10 per cent – all tickets include free return visits for 12 months.

Learn more at, www.thedeep.co.uk/ plan-your-visit/access-for-all

The Newcastle United Foundation runs a variety of different, inclusive football sessions for different needs, with over 1,300 players taking part in the disability football sessions in the 2015/16 season. Courses include powerchair football, frame football, visually impaired, cerebral palsy, hearing impaired and pan disability football. The classes are mostly free, and run on a turn up and play basis. Football is a great way of exercising, and making friends, and learning the importance of communication and team work. Email reggie. dornan@nufc.co.uk

MUSIC4U

Aberdeen Arts Centre, Aberdeen www.m4u.org.uk Listening to music and taking part in musical activities is a great way of elevating happiness levels, reducing stress and relaxing. It’s no wonder, then, that music therapy is so popular. Music4U is just one of the many music groups for disabled children in the UK, running musical theatre, youth choir and dance sessions, with the opportunity to learn musical instruments, too. The classes aim to boost confidence and self-belief, while also providing the opportunity to socialise and make friends. For more information about how to take part in the classes, email info@m4u.org.uk

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Support children with emotional, behaviour and mental health issues!

A £2 billion boost in funding is being made available for children’s mental health in the UK. The register of Play and Creative Arts Therapists accredited by the Professional Standards Authority will give you a big opportunity in taking advantage of it.

The APAC courses are the only ones meeting the requirements of this register.

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PIC: © AMBITIOUS ABOUT AUTISM

enable education

EDUCATION FOR

Everyone T

here are benefits and disadvantages of both SEN and mainstream schools for each individual pupil. The best way to find the answers to your questions is visiting different schools and learning about their resources.

DECISION

Ambitious about Autism is a charity for autistic children and young people.

They run specialist schools and a college to ensure every autistic child and child with a learning disability has access to an education that suits their individual needs.

“Every autistic child is different and has different needs and aspirations,” explains Ambitious about Autism’s director of external affairs, Alison Worsley. “Some children will need a specialist setting to reach their full potential. However, many can thrive in a mainstream school with the right support.”

Your child’s individual needs should always be the first consideration when deciding the type of school they should attend, especially where they will best be able to reach their optimum potential and be happiest.

As the summer holidays come to an end, you may be starting to think about the upcoming academic year. Making decisions about your child’s education can be tough, but there is support available

EDUCATION

“In specialist settings, pupils who need a higher level of support may have easier access to different professionals – for example, occupational therapists, speech and language therapists, and behaviour specialists,” Alison encourages.

“They may also be able to access a different type of curriculum, which places more emphasis on developing practical skills to improve quality of life.”

Specialist schools are ideal for pupils who need additional support that would not be available in a mainstream school.

However, as Alison points out, most autistic children (70 per cent) attend mainstream schools.

“Many pupils are able to achieve at national curriculum standards and with extra support they can do this in mainstream schools,” she explains.

PLAY THERAPY

The Integrative Model of Play Therapy has a success rate of between 73 per cent and 84 per cent for children with SEN and mental health issues. A new training scheme is being developed for

“However, autistic pupils can face difficulties in some mainstream settings due to lack of understanding of their needs.”

GUIDANCE

If you decide to send your child to a mainstream school, the school is legally required to provide support and adjustments to enable them to fully participate in school life.

No one knows your child better than you do, making you the best person to make the decision – but you don’t have to make it alone.

Alison concludes: “The key is to find a school where your child feels comfortable, and that will work with you.

We believe all schools should have an inclusive ethos and a focus on what is right for the child.”

employers where 90 per cent of the cost of training a Registered Play Therapist will be paid by the government. To join the group, contact Jeff Thomas at jefferytht@majemail.com

Get further advice on your child’s education by visiting Ambitious about Autism (www.ambitiousaboutautism.org.uk), Mencap (www.mencap.org), and Special Needs UK (www.specialneedsuk.org).

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PORTLAND COLLEGE

A specialist independent college for both residential and day learners based in the heart of Sherwood Forest. A range of courses available to people with learning and physical disabilities and difficulties, focussing on independence, employment and various vocational options.

Navigate is a free service for parents and carers of children under 18 at the start of their child’s diagnosis journey.

Book a space oon our next Open Day Wednesday 16th October A perfect opportunity to see the campus and hear what Portland can offer you.

FOLLOW US!

For more information... visit www.portland.ac.uk call 01623 499186 or email graceturner@portland.ac.uk

HEALTHCARE

Our experienced advisors are there to support families to navigate that process and any challenges ahead.

In six one-to-one sessions, they will provide practical and emotional support.

If you’d like to find out more visit scope.org.uk/enable

You Assess, We Assist Free-of-charge, no obligation seating assessments for children supported by your local BES expert Free advice and assistance to Physios and OTs Evaluation of seating systems and supports Repositioning of systems for optimal postural control Options to trial alternative solutions free of charge

To arrange a free, no obligatory assessment for your school or Child Development Centre, please call us on 01179 666 761, or email info@beshealthcare.net.

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STEPPING INTO

UNIVERSITY Education and knowledge make the world go around, and everyone is entitled to the best education possible. Disability shouldn’t stand in the way, and with more universities becoming accessible your time to expand your prospects is now

T

he feeling of being accepted into higher education, be that college or university, is unlike any other. In an instant, new, exciting doors are being opened for your future.

Recent years has seen an increase in the number of disabled students thriving and flourishing in higher education. With understanding of disabilities growing, alongside a push providing reasonable adjustments to students – disability is no barrier to education.

CAPABLE

“I’ve always grown up believing I was capable of going to university,” enthuses Raisa Hassan, who graduated from the University of East London in 2017. Obtaining a degree in BA (Hons) Creative and Professional Writing, Raisa received support from a wide number of outlets to ensure she had the same chance as her classmates to get the most out of her degree.

From the moment you decide to go into higher education and your application is submitted, there are people on hand to support your journey. UCAS is the leading organisation connecting students to the world of advancing knowledge.

Working directly with people looking to apply for undergraduate and postgraduate courses at universities across the country, when it comes to writing your personal statement to get into your desired course, UCAS can help.

“We’ve a range of information and advice on ucas.com that highlights the support available, and experience of students with disabilities in higher education,” explains Ben Jordan, senior

policy manager at UCAS. “Within the application, students can declare any disability or special need. It’s there to help the university or college understand your specific circumstance and start a conversation about how they can support you.

“This question is optional and isn’t used to inform a decision on whether the student gets an offer,” reiterates Ben. Upon getting into university, Raisa had to go through, admittedly, a lengthy process to ensure all relevant services, adaptations and support were available. However, once this is approved you can make the most of university any way that works for you.

ESSENTIALS

Living with cerebral palsy, and as a wheelchair user, there were requirements that Raisa had to request during her Disability Student’s Allowance (DSA) application.

She continues: “I’ve been pretty active in ensuring I do get the help I need, and I won’t accept any less. I’m in an electric wheelchair with two bags on the back of me, my shoulder bag across me and my laptop on my legs: to navigate that by yourself all the time is a bit of a nightmare, particularly if you want to transfer onto a chair or go to the bathroom. Who do you trust with your things?”

Working alongside DSA, Raisa had to ensure the forms were accurate each year, alongside hiring her own support workers. “Having a support worker with me was very important to even take my notes; I also felt safe,” Raisa explains.

“I’ve had many support workers, especially because I did four years.

Most of them have been incredible experiences. For me, personally, I got on with the people who I connected with on a more emotional level and helping me get my degree up to scratch.

“My second-year support worker understood what I was doing and we had a great connection, which really helped. We did a 2,500-word essay in three hours the morning of the deadline – I got a 66 per cent for that essay,” laughs Raisa, highlighting the realities of university life for all students.

“I’m not a last-minute person, but it just happened, because I had the right person with me to get that done we were very lucky. “

PROGRESSION

Raisa credits her time at university for having the guidance of lecturers, peers and support workers, but, if there ever was a time where your needs weren’t

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enable education

Universities and colleges are experienced in helping disabled students before and during their studies

met it is essential to speak out.

Similarly, higher education providers are insuring all campuses strive towards inclusion. Ben adds: “Universities and colleges are experienced in helping disabled students before and during their studies, putting the appropriate support in place.

“It’s good for them to know the additional support you’ll need, and it helps them if you provide information about any disability, health condition, or learning support needs as early as possible in the application stage, so they can make sure everything’s in place and that you’ll have the best start,” he continues.

Over the years, more disabled students are going into higher education with figures revealing approximately 25,000 applications across 2014 to 2018 from people identifying as living with a learning disability, mental health condition, long-standing illnesses or sensory

disabilities.

As university and college campuses increase accessibility, or online providers such as The Open University adapting courses for students to learn at home, simply to having societies or support workers on hand: going off to higher education is a chance to revel in your independence and discover who you are as a person.

Raisa fervently advises: “Don’t be afraid to say what you need. For you it is a reasonable adjustment, you know your condition better than anyone else.

If you can’t work in a certain space or you can’t work without certain equipment – how are you expected to thrive? I would also say: allow yourself a break.”

FOR MORE INFORMATION

Support and advice on accessible higher education is available from Scope (www.scope.org.uk), UCAS (www.ucas.com) and the UK Government (www.gov.uk).

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ADVERTORIAL

OVERCOMING LEARNING BARRIERS WITH RAVIV Learning can be challenging at times, especially for children and young adults with additional needs or learning disabilities. The Raviv method is a new programme changing the way people learn, with families across Scotland reaping the benefits.

One couple shares their own experiences

D

eveloping natural learning and essential life skills, the Raviv method can enhance pre-school learning, overcome learning disabilities and more to ensure children get the best start in life, which is what we all want for our children.

Karen Wexelstein is the only Raviv practitioner across Scotland dedicated to helping children develop. For nearly five months, Karen has been working with Jack and his parents. Even in this short time, the benefits of the method have presented themselves.

REWARDING

“At five years old Jack was very reluctant to write and draw at school.

At home, we noticed that he had a very short concentration span to sit and write,” explains Jack’s mother Shirani Sabaratnam. “I did some research on the internet and came across the Raviv method and how effective it was with children with learning development delays.”

Jack’s father, Stuart Cosgrove, adds: “Jack had a great nursery experience and transitioned quite well to primary school, where he is as happy as any

Jack seems to make small leaps forward as a consequence of the visits

Shirani and Jack (far right) with friends

young boy can be, but we sensed that we needed to give him more help. What we liked about Raviv is that it had emerged out of a mother’s determination to try to crack the enigma of her child’s behaviours. We thought it was worth a go and it has been rewarding so far.”

IMPROVED SKILLS

Founded by mother and son, Nili Raviv and Barak Ben Simhon, the method was developed with the intention to expand on learning and attention skills crucial for all children and adults to have.

During Jack’s sessions with Karen, which typically last an hour, he gets involved with various tasks designed to improve brain activity. From candle blowing, walking in a figure of eight for 20 minutes to drawing specific circles, triangles and swirls, the techniques are simple, yet incredibly effective.

Stuart explains: “Jack is obviously bright. His sight recognition skills were fairly advanced. He could point to triangles, squares or ovals to relatively obscure colours beyond the primary colours. He floored us once by refusing to say purple and

demanding the colour was magenta – then he would struggle to draw a triangle or to follow simple colouring-in books.”

INVOLVED

Children with dyslexia, ADHD, on the autistic spectrum, to adults who have experienced a stroke or brain injury: Raviv is a method that everyone can benefit from.

“We really wanted Jack to catch up with his ‘peer’ group in terms of writing, concentrating and being calm. Jack couldn’t sit still for more than a few minutes but there was no diagnosis of attention deficit hyperactivity disorder (ADHD),” explains Shirani. “Since seeing Karen for a few months, Jack is more able to sit at a table without a tantrum.

Jack seems to make small leaps forward as a consequence of the visits.”

FOR MORE INFORMATION

Raviv Scotland www.learningdifficulties-raviv.co.uk 0771 162 3605 k.wexelstein1@gmail.com

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enable care

WHY VOLUNTEER? Building crucial life skills, meeting new people, to giving back to your local community: volunteering is an enriching experience all round. Volunteer Nicola Taylor shares her journey

T

here are many ways to give back to your community.

After getting involved in a Sexual Awareness for Everyone (S.A.F.E) Workshop – run by Volunteering Matters – Nicola Taylor wanted to take her certificate further.

It wasn’t long before Nicola, who has cerebral palsy and is a wheelchair user, was giving back.

INVOLVED

“I work to develop S.A.F.E activities and help deliver the workshops in the community,” enthuses Nicola.

S.A.F.E is a project promoting personal safety and good sexual health of young women with learning disabilities through peer led workshops, run by Volunteering Matters.

The charity devises and facilitates volunteering for more than 100 volunteer projects across the UK, and the charity

I know that the projects I work on help lots of other people

has seen their S.A.F.E project winning awards. As the project is peer-led, Nicola and other volunteers can work directly supporting their disabled peers.

helped deliver a presentation for the Aneurin Bevan University Health Board in front of 60 people,” says Nicola proudly. “I also delivered a taster session of some of our workshops.”

Volunteering makes a significant LEARN difference to many people’s lives – both “I enjoy it because I help other people the volunteer and the people you help. with disabilities,” she continues. “It has Alongside learning valuable skills, gaining built my knowledge, and I like to see qualifications to building confidence, others progressing, too.” the benefits are insurmountable.

During her time with Plus, volunteering is a great Volunteering Matters, Nicola opportunity to reach new has had the opportunity to More than heights. further her skillset. Nicola 21 million people Nicola enthuses: has achieved all her S.A.F.E “Volunteering Matters have training, plus training to volunteer in the UK helped me achieve my work with autistic people, at least once a goal of supporting others. alongside working on year They’re very friendly and another project called No... have helped me meet other SH! about understanding different groups of people and sexual harassment. make friends.

Nicola adds: “I have learned about “I want to keep on volunteering for safer relationships, internet safety, sexual as long as possible because I enjoy it so health and what I need to do to keep much, and I know that the projects I work myself safe. I have also learned about on help lots of other people.” other disabilities and how to talk to and So, what are you waiting for? There is a help others.” volunteering opportunity waiting for you.

And the responsibilities Nicola has had with Volunteering Matters will make a significant impact on her CV.

GOALS

“Apart from helping with the resources and delivering the workshops, I have

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Creating

Tech 4 good At nine-years-old Mihika Sharma is one of the youngest winners of the Tech4Good BT Young Pioneer Award having created an innovative smart walking stick. We speak to Mihika about her inspiration and her passion for helping others

S

ince the age of five, when Mihika initially came up with the idea for her smart stick, she has had a passion for giving back. The innovative walking stick incorporates different technological features to help people who are blind, D/deaf/HoH or have a visual impairment.

What was the inspiration behind your smart stick?

During February half term in 2016 my mum was helping a blind lady cross the road and she didn’t see a step to warn her about. She tripped and I got upset, so I thought what can I do to help this lady? Then I came up with my smart stick.

so that others can spot the person in the dark.

It is also 3D printed so that the size can be changed according to the person using it and it is really light, and it has an artificial intelligence camera that can be installed, too.

What is it like to know other people are excited about your smart stick?

I feel really grateful to have other people excited about the stick. It’s great to learn that other people think it’s a good idea and that it would be helpful for people.

I hope that I will be able to get it put together so that it can be used by the people who need it.

How did it feel to win the Tech4Good BT Young Pioneer Award?

I was really happy and excited because, at first, I didn’t think I would win. When they called my name, I was really happy.

The other projects were very good and I didn’t think mine was as good as it could be, but then they called me up.

“

I feel really grateful to have other people excited about the stick

“

How does the smart stick help people?

The smart stick can help people who are blind, D/deaf/HoH or have an impairment build confidence walking alone and alert them to obstacles using sensors. They can avoid puddles using sensors which will help to prevent injury.

It also takes people to their destination using Bluetooth to gain access to their phone GPS system and guiding them along the path using right and left vibrations according to the navigation instructions. It has LED lights

What is your favourite part of using technology?

My favourite part is helping other people because when I help someone else it makes me happier, after that you keep on making other things to help people.

The part when I come up with an idea makes me feel really happy.

FOR MORE INFORMATION

Read the extended interview with Mihika online at www.enablemagazine.co.uk

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