Calling for Back Up
Back Up is one of the fantastic charities supported in this year’s Candis Big Give. This month, we chat to Claire Batt from Essex, whose son Alex was supported by the charity’s mentoring service, which gave him hope and friendship at a difficult time
Claire Batt and her family have always focused on living positively and making the most of life. However, when the Covid pandemic began at the beginning of 2020, the effects of lockdown had a huge impact on her son Alex, now nine. “He has always lived with a disability, but we were at the point of learning how to live with it and finding activities that really engaged him when Covid suddenly put a stop to all that. Not attending school, seeing friends or participating in any activities gave Alex time to think, and he really started to struggle.” Alex was born with a tethered spinal cord around the C5-7 vertebral level, meaning his spinal cord had become attached to the tissue around it. “I knew something wasn’t right as soon as Alex was born because one of his hands had no grip and one of his eyes was slow to open,” remembers Claire.
“I hoped it was just something transient, but his symptoms didn’t go away.” When Alex was ten weeks old, investigations started. “He had a brain scan, which showed there was nothing wrong with his brain, but the top of his spine was narrow. They didn’t really know why or what was causing it, so he had another MRI on his spine, which failed to provide any answers.” At 11 months old, Alex had surgery to see what was wrong. “They discovered his spine was tethered so released it straight away. It was a relief to know what was wrong at last and the surgeon was cautiously optimistic things would improve, so that gave us a lot of hope.” Around six months later, Claire and her husband took Alex back to the hospital for a review. “Unfortunately, there had been no improvements since the surgery, so we were told it was unlikely he would make any progress. As time went on, it became obvious that although the surgery might have stopped things getting worse, it definitely hadn’t fixed anything. Alex was paralysed from the chest down, with no movement in his right hand or control over any of the organs below his chest level, including his bowel and bladder.
“I took him to various places to try to get help for him, and he started attending physiotherapy every week. However, eventually I decided I didn’t want to keep dragging him there when it wasn’t going to make him walk. I felt we had got to a point where we had to accept reality rather than trying to fix it, so my focus switched to finding activities he could do and enjoy.”
Over the next few years, Alex got involved in wheelchair racing and developed a great group of friends. However, at times he struggled emotionally. “He uses a wheelchair and needs help with things like dressing and personal care, so his independence is restricted. He would get frustrated and just wanted to be what he calls ‘normal’ and do sports and things like everybody else. He would also get embarrassed if he presented himself differently to other people and wouldn’t share details about his lifestyle with many people.
“We are quite restricted because if somewhere is not accessible, we just can’t go, and Alex is also very sensitive to the weather as he can’t regulate his body temperature, so we don’t go abroad on holidays. The biggest challenge, though, is the emotional aspect, as it is upsetting for us to see him sad and frustrated.”
During Covid, Alex’s emotions really got on top of him. “He had too much time and not enough distractions, and he was beginning to realise the permanence of his disability. He started focusing on things he couldn’t do, rather than the things he could, and his self-esteem was at rock bottom.
“I tired to use my knowledge of CBT to help Alex. However, Alex felt I couldn’t fully understand his experiences, even as his mum. He’d say “You just don’t get it,” and how could I? I can walk and do all the things he wished he could.”
Claire decided to get in touch with Back Up. “They had helped us when Alex first started school by sending a volunteer to talk to students about how to interact with someone who has a disability and to familiarise people with wheelchair users, which was great, and i thought they might be able to help us again.
“They mentioned their mentoring service, but i told them it was going to take a certain type of person to get Alex to open up, as he was so private. Pretty much immediately, they got in touch and had not only found someone to mentor Alex, but he was the perfect person.
“They started chatting over Zoom once a week or fortnight for around an hour – sometimes about their disability, sometimes about other things and Alex would ask him questions. For him, getting to chat to with someone in his 20s who played sport, had a good job and drove a nice car was inspiring. He was a good role model and showed him what life could be like.”
Alex has opened up to his mentor about his emotions around his spinal cord injury and how unkind comments from others made him feel. “His mentor gave him valuable tips, such as saying to the person, “What you are trying to do is bring me down to make yourself feel better.” Ale continues to say this phrase and finds it very empowering. His mentor also showed Alex how to use breathing techniques when he is feeling frustrated, and we both still use them both nights.
“I think about six months into the mentoring I really realised what a difference it had made when Alex had a really bad day at sports day, feeling like he had been left out.He told me the only thing that would help him was talking to his mentor about it.”
Thanks to the support of his mentor, Alex has also been trying new sports and activities. “His mentor told him about a place where he does waterskiing, where you sit in the ski rather than stand. We didn’t know this was a possibility for someone who was paralysed, but I took Alex and his sister for a taster day, and they had a ball. Alex has also joined a wheelchair basketball team and goes every Saturday now for two hours with his dad. His next goal is to learn how to swim. “Mentoring has been a life-changing experience for Alex. His mentor was so positive about the future that it helped Alex picture all that his life could be, which gave him hope at a time when he didn’t have any. Alex is so much more open now with friends and family and is able to talk to us and seek advice rather than bottling things up.
“When we approached Back Up, we felt desperate and helpless, and they were there for us when nobody else was. They made Alex a happy person and gave him the boost he needed, and I’ll be forever grateful to them and to Alex’s mentor.”
THE CANDIS BIG GIVE PROJECT:
BACK UP – TRANSFORM A LIFE THIS CHRISTMAS
FUNDRAISING TARGET: £40,000
The money raised in the Candis Big Give for Back Up will go towards offering a package of support to those affected by spinal cord injury, which can have a devastating effect on every area of a person’s life and leave them feeling isolated and alone.
The services funded and available for people affected by spinal cord injury include wheelchair skills training, telephone support, life skills and activity courses. The charity also provides a city skills course, which focuses on how to use public transport and navigate a city while using a wheelchair, an extensive mentoring programme where it links up people who are newly injured with someone who is in a similar situation but has been injured for a number of years, so they can share their experiences and work towards individual goals with support; an education service that works with schools , colleges and families to make sure children with a spinal cord injury can get back to school and are getting the correct adjustments so they can be fully included; an outreach team that goes around the UK and often works in hospitals supporting people with spinal cord injury; and a vocation service, for getting people back into work who may no longer be able to do their former job and are looking for alternative positions.
These services are all designed and delivered by people affected by spinal cord injury and help to give people the skills, confidence and independence to get back to living life to the full.
Visit backuptrust.org.uk for more information.
WHAT BACK UP MEANS TO ME
Abigail Lock, CEO for Back Up, explains why the charity’s work is so important
Growing up as a child carer with a father with multiple sclerosis, I have always been very aware of how having a disability affects a person’s life, and how it impacts on the whole family. There weren’t as many opportunities and services around at that time to support disabled people, so my father was really negative about the world and closed down and didn’t want to do anything.
“I remember first coming across Back Up in September 2019 – before starting my role with the charity the following February – and just being really excited about the work it does, as I knew from my own experience how valuable its tailored activities and support would be. It’s the only charity in the UK with dedicated services for children and young people with spinal cord injuries. It was focused on having fun and overcoming challenges and giving people the practical skills they need to get their independence back and regain the lives they want to live.
“Since I began working with Back Up, I have been honoured to see first hand the huge difference it makes in people’s lives. One of the things we deliver is wheelchair skills to people in hospital, and this is so fundamental. You wouldn’t get into a car without driving lessons, but many people start using wheelchairs and aren’t taught the skills they really need. Being able to get up and down kerbs in wheelchairs and knowing how to push up a hill, for example, is really freeing for people and absolutely transformative.
“We have a whole range of different services and are well known for the courses we offer. Spinal cord injury can happen to anyone at any age, and when it happens suddenly, you just don’t know what’s possible. Being able to go out and do horse riding, swimming, canoeing and cycling – and seeing all these activities led by people who also have a spinal cord injury – is really empowering and powerful and shows people all the things that are possible. We help to give people the practical skills and support to be able to live confidently, have a full, independent, fulfilling life and thrive, while having fun along the way, and that’s what makes the work of Back Up so special.”
Leave a Reply
Please login or register to leave a comment.