Disabled Living is a charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled adults, children, older people, carers and the professionals who support them.
This post has been written by Jennifer Grey on behalf of Paralympian, Sophia Warner.
Taking your child through the challenges of a cerebral palsy diagnosis can be a difficult process. For many parents, cerebral palsy is something they only become aware of when their child is diagnosed with the lifelong condition.
But, with 1 in every 400 babies in the UK being born with some type of cerebral palsy, it’s not as uncommon as it might seem. And, as more and more people share their stories of living with the condition, it becomes easier to find the information, help and support that can be invaluable for anyone dealing with a cerebral palsy diagnosis.
One such person is Sophia Warner, a Paralympian with cerebral palsy who won Silver at the 2011 IPC Athletics World Championships. Sophia began racing at the age of 19 and has since forged an incredibly successful career in athletics. In 2019, she received the British Empire Medal for voluntary service to disability sports. She’s a great example of how anyone – regardless of their condition – can excel in sports.
We asked Sophia to share with us some tips and advice for helping children with cerebral palsy (and similar conditions) find motivation through sports. Here are her top four tips for embracing sports:
Disability has no limits
Sophia swears by the benefits of sport, not only for improving her fitness, but also for allowing her to have a better quality of life overall. Not to mention the massive benefits to her mental health that go hand-in-hand with the improvements in her physical health (particularly as exercise helps keep her cerebral palsy symptoms at bay).
As you look for ways to motivate your child through sport, however, Sophia recommends taking it slow and exploring as many options as possible. Try lots of different things, in order to find the sport or activity that best suits your child’s ability and interests.
“It’s all about finding something that your child wants to do every day, and then supporting them through it,” says Sophia.
Your confidence will come to you
When it comes to introducing your child to sport, “it’s important to get over the initial barriers which are usually lack of confidence and motivation,” says Sophia, adding that “people with disabilities tend to be the ones who see the greatest benefits from exercise.”
So, if your child is feeling nervous or self-conscious before starting a sport, try to be a source of gentle encouragement. Hopefully, as they gain a better understanding of their bodies and which sports work best for them, they’ll gain confidence as well.
Whatever your favourite sport, add swimming to the list
Sophia says that, while it’s important to explore the sports that you enjoy doing, swimming is one she absolutely recommends for all children with cerebral palsy.
“From my experience,” she says, “swimming complements other sports and I know that I benefited from swimming sessions alongside my training.” To start off with, find a warm indoor pool and a swimming instructor with experience instructing children who have cerebral palsy.
Choose a team sport to meet like-minded people
One of the great benefits of sport is the boost of happy endorphins that exercise releases. But, Sophia reckons there’s more to it. “We all know that being active is great for your physical health, but it can also boost your happiness by enhancing your social life.” If they’re willing and ready, take your child to group sports to help them mingle with other children like them.
As you adjust to your ‘new normal’ with your child, it can be useful, encouraging and empowering to read stories like Sophia’s. Read her full story in the Cerebral Palsy Advice for Parents hub, which also includes resources and information on other areas of life after a cerebral palsy diagnosis.
This post has been written by Chris Cammis, Disabled Living’s Disability Awareness Trainer. He talks about why he had a lovely day out at MediaCityUK.
I had been invited by Simon Lord of Continuum Entertainment to deliver Disability Awareness Training to a group of their Tour Guides. Simon is the General Manager of their Manchester office with responsibility for recruiting, organising and training staff to deliver the official Coronation Street Tours. I hadn’t realised beforehand what a big deal this was. Continuum organise official tours around many of the major UK tourist venues as well as Coronation Street – The York Chocolate Tour, Emmerdale Village Tour, Spinnaker Tower Portsmouth and Oxford Castle and Prison to name a few.
The tours run every Saturday and Sunday (filming takes place all through the week!), setting off every 15 minutes, with up to 50 people per group. That adds up to thousands of people every weekend which inevitably means the tour guides will encounter many people with all sorts of disabilities on a daily basis.
Unfortunately, we weren’t located anywhere near Coronation Street’s set so I saw no famous faces running through their lines but we did start the session with a private showing of a new publicity DVD that Continuum had just completed, which was well received by all.
I then organised a session covering ‘Appropriate Language and Appropriate Behaviour’ to use when dealing with disabled visitors, including all the standard issues around wheelchair etiquette, accommodating assistance dogs, working alongside BSL (British Sign Language) interpreters and so on. Delegates were given the opportunity to ask questions relating to their experiences of tour participants who might be on the autistic spectrum, exhibit over-familiarity with the guide, and show no apparent sign of interaction and so on.
There was a fascinating mix of real-life experiences to add to my own stock of issues and anecdotes. This all led to an absorbing session enjoyed by all. It’s always exciting to deal with a group who can cope with my material and are then prompted to ask questions of their own – sometimes unexpected.
Hopefully this event will become a regular occurrence as new guides are recruited and will also lead to similar work around the UK at other Continuum tourist venues.
The Cerebra Innovation Centre (CIC), a partnership between Carmarthen based charity Cerebra and the University of Wales Trinity Saint David (UWTSD), has won a prestigious award for Innovation, Science and Technology Award at the annual St David Awards ceremony organised by Welsh Government.
CIC is a team of engineers based within UWTSD’s Swansea College of Art. They design and build innovative, bespoke products to help disabled children to discover the world around them. Their designs are desirable and exciting as well as functional, promoting social inclusion and peer acceptance for the children they help. Products and advice are provided to families free of charge.
The St David Awards are the national awards of Wales and are nominated for by the public.
Now in their sixth year, the Awards offer the opportunity to celebrate the nation’s most inspiring and talented people, and to give them the national recognition they deserve. The finalists and winners are decided upon by the First Minister of the Welsh Government and his advisers. The winners of the nine St David Awards categories were announced at a special ceremony that took place in the Senedd in Cardiff on March 21st.
“The CIC team are so proud to have won the St David Award!” said Dr Ross Head, Product Design Manager, CIC. Our jobs give us so much satisfaction; to be able to help children access activities that most people take for granted is a great privilege but to be recognised nationally for our work is simply amazing. A huge thank you to all of the Cerebra staff and our supporters, without whom we would not be able to fund this work. We believe that, with a little bit of help, anything is possible – I hope that winning this award will pave the way to helping many more children across the UK.”
Tracy Elliot, Head of Research and Information at Cerebra added: “We are delighted to have won the St David Award 2019 for Innovation, Science and Technology. We believe passionately that the young people we support should be able to take part and participate fully in society. We develop innovative and, above all, fun solutions to the problems and barriers parents raise with us. Our designs aim to reduce some of the social stigma attached to disabilities by making not only functional but beautiful products that enable our young people to participate in activities that are too often closed to them. We aim to demonstrate what can be achieved with the right attitude and support and hope that by winning this award some of our passion and belief will influence others.”
Ross and the team develop logical, innovative and fun solutions for children with brain conditions.
Their designs aim to reduce some of the social stigma attached to disabilities by making not only functional but also beautiful products for amazing young people. Some of their products are ‘one-off’ bespoke designs, others are made in small batches and some are designed with the commercial market in mind.
The ethos of CIC is simple – if they can dream big, they can do big. Never accept it’s not possible. The Team have designed lots of equipment to help children in disabilities participate in activities such as surfing, horse riding and even triathlons. Last Autumn CIC helped six-year-old Imogen, who has cerebral palsy, reach the top of south Wales’ highest mountain in a specially modified four wheeled mountain bike.
Imogen’s mum, Catherine, explained the difference the team have made to her family:
Imogen was so thrilled and excited to have completed the climb. It’s only thanks to the team at Cerebra that she’s been able to have this adventure. She’s never been able to do anything like this before because of her cerebral palsy. There have been so many times that she hasn’t been able to join in with physical activities which leaves her feeling left out. Being able to do things like this is a real boost to her confidence and self-esteem. We really are over the moon that CIC have won this Award.
Professor Ian Walsh, Dean of UWTSD’s Swansea College of Art is extremely proud of the team, adding: “The University is delighted that the Cerebra Innovation Centre has won such a prestigious award. The innovative and inspirational work of the Centre has transformed countless lives over the past 15-years”.
This post has been written by Katie O’Thy, Digital Marketing Assistant at Pro Rider Mobility, who are listed in our Supplier Directory.
If you or a family member have a disability which means having to use a mobility scooter then you will know how difficult it can be to get out and about during the cold, wet, winter months.
Fortunately enough we have now said goodbye to winter and hello to spring, we’re more than ready to welcome some sunshine and the days being lighter for longer. With the change in season comes a change in possibilities for those who use a wheelchair or mobility scooter.
The spring and summer days allows those who are disabled to access more opportunities and not be restricted by the confines of the house – day in, day out.
There are a variety of mobility scooters available to cater and meet everyone’s needs, from a light, foldable scooter which is easy to store and place, to pavement and road scooters which are available in different speeds and sizes.
A foldable mobility scooter is a great choice for the upcoming summer months, it doesn’t limit you to where you can go and what you can do because with the easy to fold option it only takes a minute to fold the scooter up, pack it in the car and head out with the family for a fun filled day. We’re sure this is something that the whole family will love, being able to spend time with all of their loved ones and not feeling as if anybody is left out due to their disability.
Summer Scooter Safety
While thinking about how the warmer weather makes for a more pleasant day out, now is a good time to mention how the roads and pavements will be much safer compared to winter.
During the colder months we find it to be a lot wetter and potentially icy outside, causing accidents to all people of all ages. These conditions however, put our elderly or disabled family members at more risk so it’s no wonder that staying in during winter can seem like a better and of course, safer option.
With the sun now beginning to shine and the rain not making as many appearances, the pavements are dry, accessible and most importantly safe for mobility scooter users; there is no risk of slipping on ice or getting soaked!
We know that independence to someone with a disability is massively important and that’s why we aim to help with providing as much increased independence as possible along with making sure awareness of safety is paramount; not just in the summer months but all year round.
By opting for a mobility scooter you’re guaranteeing yourself a much more positive future, no longer being stuck and having to rely on others, no more worried family members fearing you might injure yourself on your feet. Operating a mobility scooter it is so straightforward; it can be gotten to grips with in no time, and with further support always available, it really is worth making this investment to an improved and more fulfilled lifestyle!
This post has been written by Michelle Katz from Beyond the Boundary Wheelchairs who are listed in our Supplier Directory.
Viv and I are partners in Beyond The Boundary Wheelchairs. We are also sisters and counsellors, and we both chose our profession so we could ‘make a difference’ and help people live their lives in a happier, more fulfilling way.
When we first discovered the Trekinetic wheelchair we realised, surprisingly so, that these lightweight and all terrain chairs offered the same betterments for disabled people, their families and caregivers, as counselling did for our clients.
Feeling safe and confident that the chair will cope with most terrains, means people can live their lives in an increasingly freeing, independent and happier way. And as horizons broaden, and challenges previously unattainable or withdrawn from, are faced, self esteem and confidence increases, enabling even more obstacles to be tackled. One might call it a forward propelling cycle..mentally, physically, emotionally and probably spiritually too.
Meeting incredible people
In the 5 years we’ve been selling Trekinetics we have met some of the most incredible people, and when we’re told how much difference the chair has made to their lives, we are simply tickled pink.
To witness someone who has lived opposite the moors at Dartmoor for years but never been able to access them until she tried the powered trekinetic GTE, was just magical for everyone, and truly an emotional experience. A year later, Hannah sent us this:
I’ve lived on Dartmoor’s doorstep my entire life end yet until now I have been unable to negotiate any of its undulations, styles, see its beautiful sunsets, visit any of my favourite places or experience new ones without much effort. Now I’m pleased to say that’s a thing of the past. The speed is awesome! The chair is very comfortable and light. In all honesty when you look at the chair for the first time you could be forgiven for thinking it would make it at all, to anywhere but then it does! I’ve owned the GTE for over a year and am having a fantastic time and I’m looking forward to many more fantastic times.
Much to our wonderful designer and manufacturer’s delight, (petrolhead and former tool maker for Formula 1, Mike Spindle) Hannah went on to say:
“As amazing as perhaps collecting the keys to a brand-new F type Jaguar – the Trekinetic GTE is smart, beautiful, sharp and in a league of its own; this is infinitely better, it’s life changing.”
We love gathering information about what people think of the Trekinetic, but it was with a little trepidation when we asked Julia what she thought of our State of The Art, Funky 3 Wheeled Off Road Powered Chair, as she too is an engineer! Mike was of course thrilled with her 10/10 for style and we were delighted she’d get to keep her husband!
I wanted a chair that was light weight, powered and all terrain, and would enable me to go for walks with my husband so he didn’t have to go alone (or find a new partner!) I absolutely loved the design, and would, if asked, give it 10/10 for style. Thank you for your time, attention to detail & patience. I can’t think of anything that would have improved my first experience, and my order is in the post. Julia V. – Slough, UK
Helen has travelled some 230 miles in the 2.5 years she’s had her chair. She’s been to wonderful places in the UK and abroad. She was especially pleased she could continue to go out when it snowed.
Maggie takes her dogs to their agility classes, and then for a lovely run and playtime on the beach.
And then I met Elisabeth. Beautiful, energetic, crazy, shoe addict, and owner of the Ultimate Vegan Cafe (opening soon in Lichfield). There is no denying the Trekinetics are eye catching, and Elisabeth has certainly caught the eye of several celebrities, including
Steven Fry and her idol, Eric Cantona.
Elisabeth said: “I have had my green chair for two months now and it has changed my life.”
She continued to say:
I loved the wheelchair immediately. It was comfortable, practical and looked great. I was amazed at all the options available for the chair. A dog walking attachment for a dog lead an umbrella, a fitted water bottle and a range of colours for the chair. I have had my green chair for two months now and it has changed my life. I cannot wait to go out the house now, the chair is so easy to drive, I get stopped so many times by strangers asking me about my chair.
I have been across fields and around London shopping. I love it. It fits into our car a lot easier than my old one and is much lighter. I love my chair so much I have ordered a second one. I am going to Vegas in October and can’t wait, as I know how comfortable and agile my chair will be. Thank you Beyond the Boundary Wheelchairs for making my life a happier and more fulfilled one. – All–terrain Trekinetic GTE Wheelchair owner
We are so proud to be involved with Trekinetic
There is simply no other chair like it. We know it won’t suit everyone, and that the majority of wheelchair users generally have at least 2 chairs. However because they’re bespoke, so many adaptations are possible. They’re great outdoors and incredibly maneuverable indoors. They can be lifted and put it any almost every car. To our knowledge the GTE is the only Powered All Terrain wheelchair in the world where that’s possible. It’s suitable for children and can be adapted as they grow and reach adulthood. And the chairs are incredibly comfortable and safe.
Viv and I really enjoy meeting people and enabling them to try the Trekinetic out in their homes. If you’re interested in having a no obligation demo, please do call us 07973 731194 / 07885 059990
Follow Beyond the Boundary Wheelchairs on social media
This post has been written by Deborah Bell, Enablement Team Manager at Disabled Living.
George Bernard Shaw: “I learned long ago, never to wrestle with a pig. You get dirty, and besides, the pig likes it.”
This quote makes me chuckle but it’s so true. I used to feel like I was wrestling with a pig when I was trying to get my team to learn how to do their job. Let me explain what I mean…
Before working at Disabled Living I was nursing with a team of staff who cared for a young chap (let’s call him M) in his own home. I did this both part-time and full-time for around six years.
M had been in an accident in his late teens and had spent a long time in hospital in various parts of the country. He had close family and friends who would appear at all times of the day and night to keep him company.
M was ventilated and as a quadriplegic could only move his head
Whilst he made great effort to remain positive, he did at times have bouts of grumpiness and understandably could be quite sharp tongued. His voice was the only way he could control things and sometimes the team members would get spoken to in a way that could upset them. This would lead to times when there was a high turnover of staff which in turn led to some difficult days when there wasn’t enough staff to care for M. On these days he couldn’t go out as two people were needed for this. We spent one year in particular where this had become a vicious circle. Members of staff were not staying, which in turn made M less confident in the staff that were new. He would become critical and point out mistakes and they would leave. It was a very difficult situation to work in and I am sure it was a very difficult situation to live in.
When well staffed, M was active despite his very complex needs and he had an active social life which involved members of my team. As I said, he always had two people with him at all times and regular trips to the pub were the norm.
Team members varied in age and experience, originally all employed via an agency. Eventually they were all employed directly by M who was their employee. Some had been there a few years and knew how to perform the everyday tasks whilst others had no experience in care and had come from very different walks of life.
There were different personalities, some loud and some quiet which was evident with the volume in the house sometimes.
As with many care situations the common issue of staff leaving and new staff coming on board was just part of the job. When I first started I found it challenging to keep up with organising the inductions and mandatory courses needed alongside all the specialist knowledge the carers needed in order to look after our employer.
At the time I started, all the training was done on a face to face basis. There needed to be 10 regular staff working a 24 hour rota 7 days a week. You can imagine how difficult it was to ensure everyone was available to attend the training. There were regular occasions when training would be booked and paid for and the number of staff who actually attended made it financially unfeasible. I couldn’t get the staff to training on their days off and if they were working nights it wasn’t reasonable for them to attend training either before or after a night shift.
It was at a point when we were trying to organise a series of mandatory training around food hygiene that I felt like I was really trying to wrestle a pig. I felt like I was always nagging staff about their time and effort. It made me feel more stressed than I should have been.
Something needed to change
As a nurse I had done some online training and I decided it was time to see if this method would be more attractive to the team and to M who was adamant that the training was high quality and relevant to him.
We chose some courses initially and began to implement the new process where staff could log on in the afternoon of their shift when M had visitors so they could do their training during work time.
The first course we chose was Food Safety. It went down a treat. Within two weeks all the staff had completed the course and were up to date with their skills. The next course we chose was Equality and Diversity followed by Communication which I felt was important for the team to become highly skilled in.
The transition to training online for this team was smooth and effortless
I cannot say whether it was the support the team felt from being offered the training or whether it was this particular group of people. But the same team stayed for the next three years (I know! Almost unheard of). M calmed down quite a lot in this period. He even went on holiday abroad which took a lot of organising but was so worth it in the end.
I’m sure that not all the improvements were down to online training. However, the staff were definitely more motivated. They could ask for training on specific subjects knowing they would be listened to.
I wouldn’t have been able to arrange all the training they received on a face to face basis. It wasn’t financially possible. But e-learning gave us a much wider opportunity to include subjects relevant to M and his condition.
For some subjects such as Moving and Handling, face to face training is necessary and invaluable. But I wouldn’t hesitate to recommend online training for many other subjects.
Disabled Living have partnered with Innovue to deliver these very popular courses; the majority are £15 each per person. It is so easy to do and it makes investment in your staff a no brainer. I highly recommend it if you want to stop wrestling with pigs.
This post has been written by Yorkshire Care Equipment.
Carole had been given a wheelchair by the NHS Wheelchair Services that met her needs but was simply too heavy for her to push herself in. She decided to take matters into her own hands and started looking for a lightweight wheelchair that would give her some well-deserved independence.
Carole searched for mobility equipment shops in her local area and found Yorkshire Care Equipment. She had a quick phone call with a member of their team and arranged to visit their showroom to look at different wheelchairs that would be easier for her to propel herself in.
Looking specifically at active user wheelchairs, Carole wanted to find a chair that would give her all the comfort and support she needed whilst being lightweight enough to self-propel.
Yorkshire Care Equipment showroom advisor Gary Hornsby-Shawe said:
I showed Carole a range of active user chairs so she could pick the one that suited her needs the most. She had been a bit worried about funding, so I gave her a copy of our charities database just so she knew that help was available should she need it.
We got the perfect chair in the end; Carole is loving it and says it’s the best chair she has ever had!
After test driving the different wheelchairs available, Carole settled on a Küschall Champion SK wheelchair in a matte black finish. She personalised it by adding on some matte black Spinergy wheels and specially design oval-shaped hand rims with a built-in rubber lining for extra grip.
Carole then returned to Yorkshire Care a few weeks later to buy a SmartDrive powered add-on which will give her some extra power when pushing her new chair.
Before, I was using a heavy old chair. It was uncomfortable and hard to propel.
Gary was very patient with me when we bought the chair and he gave me the advantages and disadvantages of all the models I tried. Yorkshire Care helped me choose a chair that fitted me.
The Champion SK wheelchair weighs less than 10kg and folds down to a very compact size so Carole can enjoy days out with no hassle at all. To see the SmartDrive powered add-on in action, watch this video.
This post has been written by Sally Devine at Healthy Me Healthy Communities. Healthy Me Healthy Communities is a Manchester social enterprise for strengthening communities, improving health, well-being and quality of life outcomes by working with people most affected by poverty and social exclusion.
Our food project, the Community Grocer, is a key part of Healthy Me Healthy Communities. It is a redistribution scheme for surplus food and household items that would otherwise go to waste. They look and feel like a traditional shop with members paying £2.50 for around £12 worth of goods including fresh produce. But they are more than just a shop, they are a valued community hub.
Each Community Grocer is locally managed and controlled, meeting local needs and a place where people want to go. Along with tackling food poverty, they are a starting point for transforming lives by offering activities, training, volunteer opportunities and access to partner services.
We have been very successful with our Grocers which continue to thrive
We are opening our 6th Community Grocers in Hulme on 26th February. Members of our existing Community Grocers who recently took one of our Food Skills courses stated,
“As a result of the course I find it very easy to go out and do shopping. I feel confident to converse with people and feel more sociable.”
Rich Browning, CEO of Healthy Me Healthy Communities said:
“The Community Grocers are a great way of bringing people together and connecting people to activities and services, tackling the long-term causes of poverty and isolation.”
We have some exciting events coming up we’d love you to come to:
Would you like to make a difference to your community?
Want to meet other like – minded people?
Would you like to put your life skills and experience to good use?
Are you aged 50 years or over?
Join Healthy Me Healthy Communities for a new project for developing new social ventures in Manchester. The project is for people aged 50-years or over and will include training, mentoring and on-going support. We will be starting at the Aquarius Centre (Hulme) developing a community-café at the centre. Interested? Come along for an informal chat over tea and biscuits on Wednesday 27th February 11.00am – 12.00pm. The training dates are Wednesdays 6th, 20th and 27th March and 3rd April.
This post has been written by Emma McClelland from Kintsugi Clothing. Our Marketing Coordinator & Content Writer, Natasha provided Emma with a few questions to answer about the company she works at.
Where does the meaning of Kintsugi Clothing come from?
Kintsugi is the Japanese art and philosophy of mending broken pottery with gold lacquer. When I read about it, it struck me as really beautiful. We all pick up scars as we go through life, both emotional and physical, but they don’t make us “less than” or take away from our value or beauty. They enhance us and make us unique. We shouldn’t feel like we have to hide them. This message means a lot to me and it’s a real driver for Kintsugi as a company.
How Emma started to work on Kintsugi Clothing
Seeing a TED Talk by Stephanie Thomas, founder of Cur8able and a disability activist lead Emma to where she is with Kintsugi Clothing. The talk was called ‘Fashion Styling for People With Disabilities’. Stephanie pointed out that there are more clothing lines made with dogs in mind than disabled people, and that the fashion industry doesn’t see disabled people as consumers. And, by extension, just doesn’t really see them.
Stephanie’s argument was that there are millions of disabled people who enjoy fashion but whose opinions and suggestions just weren’t being sought. Once that thought was in my mind, I couldn’t shake it. I spoke to people from across the disabled community and realised a separate offering, or “clothing for disabled people” per se wasn’t what most people wanted. It was inclusive clothing, designed universally to work for more body types than just tall, non-disabled, size 6 models. Universal design is something I’ve learned about over the past year and I think it’s the future of fashion.
What do you wish for Kintsugi in the future?
I want to grow the company so that we can offer a bigger range of sizes, as well as menswear and potentially children’s wear, although there are a few really good children’s clothing companies (Willow Bug, for example, and I believe M&S do a small range too) out there already.
Above all else, I want Kintsugi to be a success because it could help steer the fashion industry towards greater inclusivity and to show that universal design opens up possibilities to more people and benefits everybody.
Are there any key stories from people who have used Kintsugi Clothing?
We have only just put our product photos online. At the moment, we are taking pre-orders before our stock arrives but watch this space! You can keep up with Kintsugi’s latest news and events on social media.
January’s Story of the Month has been written by Shaun Finlay from Hastings. He tells us the story of his daughter’s life with spina bifida.
Summer was born with a hole in her spine. Her nerves were all exposed causing her to be paralysed from her chest down. This has resulted in her now being a full-time wheelchair user, double incontinent and very reliant on those around her for daily support.
On top of this she was also born with Hydrocephalus (extra fluid on the brain). This is controlled by a ‘shunt’ which drains the fluid from her brain down to her belly. It is essentially a valve, which is programmed using magnets, to control the amount of fluid to be drained. Unfortunately this means she must avoid heavy magnetic fields, e.g. airport scanners, MRI scanners, as they can adjust the setting of the shunt.
With all of these diagnoses, she has had to deal with much more than the average 6 year old. Currently she has had 4 brain surgeries, 1 major spinal surgery, multiple bladder surgeries and regular scans and check-ups, most of which are done in the Evelina Children’s Hospital in London. She also has many more operations planned for her future, including a full bladder reconstruction.
Fighting for Summer’s needs
As a family we often have to fight on Summer’s behalf, for equipment and services that she should be entitled to and should be receiving as standard. For example; when Summer was just 2 ½ years old, her consultant in Evelina recommended she have a wheelchair for her own independence and self esteem. However, her local wheelchair service declined. This then bought our first big fight for her!
We were very lucky to come across a small local charity (Charity For Kids) who were able to fund a Quickie Youngster 3. This is a lightweight wheelchair that suited all of her needs. Since then the charity has assisted in the purchase of further equipment which was declined by the NHS, including physio equipment and her 2nd wheelchair, a Ti-Lite Twist. The local community also pulled together to raise money for a specialist bed for Summer, again cementing our faith in the community spirit of Hastings.
All of this obviously takes its toll on Summer and the whole family, however to meet Summer you would never guess! She is a very bright and cheery little girl, who loves unicorns, fairies and princesses. Summer has an extremely kind and caring nature. She is one of the most selfless people I know, regularly engaging in charity events to ‘give back what they have given’. She is currently training with her dad for her 1st half marathon! Summer is a big personality in the local community, spreading joy and smiles everyday.
Summer’s favourite hobbies and activities
Despite her obvious challenges, Summer loves to join in playing with her peers and is involved with an inclusive cheer group, performing in shows and events. She has recently begun ballet, with the prospect of shows and dance exams in the near future and also involves herself with local charities attending events and raising funds to support others. To date, Summer (with help from family and friends) has raised nearly £10,000 for charity and has more planned for future events.
When she isn’t dancing, Summer has a daredevil streak within her. Having discovered para-athlete Aaron Fotheringham on YouTube, Summer has been interested and involved in WCMX (wheelchair moto cross). She has followed her older brothers and taken her wheelchair to skate parks and ramps and also to BMX pump tracks. Although she finds it rather daunting and scary to start, she loves the thrill of speed and pushing herself and her chair to its limits.
Her WCMX dreams came true in June 2016, when she got to meet Aaron. Nitro Circus (who Aaron performs with) were performing in Sussex. Aaron invited Summer to have VIP tickets to watch the show and meet with Aaron afterwards. Here, Summer watched him do his back flip in his wheelchair, off a 50ft ramp! Summer said to her mum and dad, “I want to do that!”
What we love the most about Summer
Any parent would agree that, every achievement your child makes will make you proud. As a parent of a child with additional needs those achievements can be very different. With Summer’s paralysis and the challenges that come with that, her sheer determination and perseverance inspires us, her friends, peers and everyone she meets. This was recognised last year when Summer was awarded with the ‘Gold Award’ at the ‘2018 Child Of Sussex Awards’ in Brighton. Today, it’s still a huge highlight in her life. And it gives her the recognition of the brave, strong and amazing little girl she is.
In the six years of her life, we have become more than just parents. We have become carers and nurses to her, advocates for hers and all disabled rights. We have become specialists in her conditions and a voice to stand up for her rights and needs. This is part of the ‘behind-the-scenes’ of parenting a child with extra needs, which no one ever tells you about. But we wouldn’t change a thing!
You can follow Summer’s Story through social media on Facebook, Twitter and Instagram using the links below.