RSBC partners with Capricorn Shading Group
In February 2019, Capricorn Shading Group made a commitment to support the work of The Royal Society for Blind Children (RSBC). Having learned of the impact of the charity’s core service operating across England and Wales, this national retailer responded with a commercial partnership proposal to help further RSBC’s ambition to reach more blind and partially sighted children, young people and their families with dedicated, one to one support.
It was after hearing stories like that of Jay and Heather from Worcester, that Capricorn CEO Tom O’Loughlin decided to join forces with RSBC.
Tom says, ““After hearing about some of the ways RSBC have helped blind and partially sighted children in the West Midlands and beyond, we were convinced immediately that they were the right partner for us.”
Jay’s story reminds us that sight loss can affect anyone at any time in their life, but the challenges faced by children and young people with a sight loss diagnosis are far more complex and the effect on the whole family can be immense and long lasting.
Fourteen year old Jay is one of three brothers and he lives with this mum Heather. He was born with a degenerative condition called Retinitis Pigmentosa (RP) which affects the light sensitive cells at the back of the eyes. Jay was just four when he was diagnosed and the ten years that followed, saw the gradual but eventually total loss of his sight.
It was during an ordinary Friday night at home in 2017 that Jay’s life altered dramatically. He was watching TV with his mum, something he had been able to manage pretty well with some residual sight until this point, when he experienced a sudden and complete drop in his vision. He could no longer see the screen of the TV and he and Heather were understandably very distressed.
Heather recalls, “We knew Jay was probably going to lose his sight eventually, but it happened a lot quicker than anyone was expecting and it was very scary for him.”
Both Jay and Heather were overwhelmed by their new situation and found it difficult to come to terms with his blindness, both practically and emotionally. At a time when most teenagers would be gaining independence and growing in confidence, Jay was suddenly forced to adjust to a future without sight. He had to re-learn how to do even the most basic of tasks, and with his self -belief shattered, he faced a big challenge when it came to coping at school.
“It was really, really hard,” says Heather. “I got upset even thinking about it, so I didn’t talk about it, and because Jay didn’t want to upset me, he had no one to talk to either.”
For Jay and Heather, RSBC’s tailored support was exactly what they needed. After a quick referral from Jay’s school, who had noticed the profound change in his behaviour, West Midlands Family Worker Mandie Wright stepped in to help.
Getting family support
Mandie is part of a core team of experts at the charity who offer practical and emotional support at every stage of a family’s sight loss journey, from the earliest stages of diagnosis to early adulthood. Through one-to-one support, the team of Family Workers helps both the child and their family to understand their condition, adapt to its challenges, and build the confidence necessary for a happy and fulfilled life.
Mandie says, “I first met Jay in early 2018 at his school. Gradually, over the next few weeks, we got to know each other through a series of home visits. These visits also gave me an opportunity to sit down with Heather, and to really listen to the concerns and difficulties she had. It was the first time that anyone had been able to give her that time, so for her to feel like someone was ‘on her side’ was very important to her.
“Mandie actually took the time to explain what things we needed to do, and then helped us get them done,” says Heather.
Mandie adds, “We soon settled into a routine of meeting once a week during school hours, in a one-to-one session. Because these conversations are strictly confidential, I can act as a confidante for Jay - he can tell me things that he might not be comfortable telling his teachers or even his mum..”
“Part of my work with a young person like Jay is about confidence-building, so when he has a problem or an issue, rather than fixing it for him, I help him work out solutions for himself. He won’t always have me sitting on his shoulder telling him what to do, so he needs to be able to work out how to overcome his own challenges.”
Ultimately, our aim is to get a child and their family to the point where they don’t need us anymore. We will continue to offer support, if the family needs it, until the child is 25 years old, but before that point we gradually reduce the level of intervention to allow them to become self-reliant.
In the few short months that I’ve been working with Jay, the change in his outlook and his confidence has been remarkable. He has learned how to use several different kinds of assistive technology, as well as learning to read and write Braille (he’s even writing a Braille book for VI kids, complete with raised illustrations).
Jay says, “I miss playing games on my X-box, but I can still use my laptop and my phone,” he says. “I’m not sure what I want to do when I leave school, maybe something with computers.”
Heather says, there’s no reason why Jay’s horizons need to be any less ambitious than those of his sighted friends.
“I’ve always told him that he can do anything anyone else can, and that he doesn’t need to let his sight loss stop him doing things,” she says. “But these days I think he actually believes it ”
RSBC Family Support Worker
Mandie Wright is a Family Engagement Worker with the Family Support Service at the Royal Society for Blind Children (RSBC). The RSBC Family Support Service operates across England and Wales, and is available to blind and partially sighted children and young people from birth to 25. You can find out more about RSBC's Family Support Service on our website at www.rsbc.org.uk/what-we-do/family-support-service
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