Mandie Wright discusses how the right support is helping one blind young learner to adapt to changes in his life
Blind and vision impaired (VI) children are routinely offered access to practical school support in the form of specialist teaching staff. But is this enough? In this article, I will argue that adding social and emotional support into the mix can make a big difference to positive educational outcomes for VI children.
It was an ordinary Friday night when 14-year-old Jay (pictured with his mum Heather) lost his sight completely. Sitting down to watch TV with his mum, he realised that he couldn’t see the screen at all.
Diagnosed at just four years old with the degenerative condition retinitis pigmentosa (RP), Jay had been gradually losing his eyesight for ten years.
“We knew he was going to lose his sight eventually,” says his mum Heather, “but it happened a lot quicker than anyone was expecting.”
At a time when most kids his age were gaining independence, Jay was adapting to a life without vision. He had to re-learn how to do even the most basic of tasks, and with his confidence hugely affected, he faced a big challenge when it came to coping at school.
Support in school
Due to a lack of awareness around the various ways that sight loss affects different people in different ways, visually impaired children’s needs and abilities can often be misinterpreted or overlooked in a school setting. This can lead to children being neglected or left behind both academically and socially – in classrooms, the lunch queue and the playground.
Children and young people like Jay who lose their sight, as well as those who have lived with a vision impairment since birth, can access a range of services to help with their education and development, and ensure they are not left behind.
With most teachers being unlikely to have worked with a child with VI before one arrives in their classroom, support is not always immediately available within the school. However, every local authority has a statutory obligation to provide support in the form of a QTVI: a Qualified Teacher of the Vision Impaired.
The QTVI is central to the education of children and young people with VI, and they can be involved from the early years foundation stage through to HE and other post-16 settings. Their role is broad and varied, with responsibilities ranging from advising on strategies for curriculum access and independent learning, and teaching specialist skills such as Braille, to assessing learning environments, reviewing access plans and working with specialists on mobility and independence skills.
Children with a vision impairment may also have access to a specialist teaching assistant (TA), who can assist the QTVI in education settings by working directly with the child. Their role involves understanding how a child’s condition affects their learning and modifying and adapting learning materials accordingly, as well as identifying learning opportunities that complement the child’s abilities and interests.
By ensuring each child with VI is given access to a QTVI and TA, schools can ensure they are doing their best to understand the child’s individual needs, and use this knowledge to allow them the same opportunity to take part as their sighted peers.
While some TAs are experienced and knowledgeable about vision impairment and relevant assistive technology, and in some cases, the ability to read Braille, their level of knowledge can vary.
Some TAs are employed directly by schools, while others are employed by the local authority’s visual or sensory impairment service. The support available varies and some authorities are able to provide a much higher level of support than others.
The missing link
In Jay’s case, he had been receiving support at school from both a QTVI and a specialist TA throughout the time during which his sight was deteriorating. But when his sight went completely, it was much harder to cope, even with the support he had at school.
Both he and his mum found it difficult to come to terms with his sight loss, and they lacked the emotional support they needed during this difficult time. “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.”
No child learns in a vacuum and their emotional health, and that of their family, plays a huge role in how well they are able to engage with education. With both Jay and his mum struggling to adapt to his condition, Jay became withdrawn and increasingly anxious about his school work.
Jay’s QTVI had noticed the change in his behaviour, and his apparent lack of confidence compared to his sighted peers, so she sought assistance from an outside service in the form of RSBC’s Family Support Service. The one-to-one support provided helped both Jay and his family to understand his condition and prognosis, adapt to its challenges, and build the confidence necessary for a happy and fulfilled life.
Jay’s QTVI, Linda Webb, explains why this support is so important: “Even though there is a lot of practical support available to a VI child in school, sometimes the child’s mental and emotional health can get left behind. Especially in a situation where the family is also not in the best place emotionally, this can have a significant negative impact on the child and his ability to keep up with the demands of his education.”
I met Jay, along with his existing support staff, at the start of 2018 in an introductory meeting at his school. Gradually, over the next few weeks, we got to know each other through a series of home visits. These home visits also gave me an opportunity to sit down with Heather, and to 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.
This whole-family support can make a big difference to educational outcomes, as the happier and more resilient the parents and rest of the family are, the better chance a child with VI will have to flourish. Parents and educational support staff are at the centre of the solution. If parents, TAs and QTVIs are all equipped with the tools to cope with and understand a child’s VI diagnosis, they can ensure sight loss does not get in the way of the child’s future.
Support workers can also be of great assistance to the child with VI, enabling them to discuss issues in confidence that they might otherwise not feel comfortable discussing with the people they interact with on a daily basis. “I think he doesn’t tell me about his problems because he knows that I’ll get upset”, says Heather, “but it’s different with [the support worker]. It’s taken the pressure off both of us now that he’s got someone he can talk to about things.”
A huge part of working with a young person like Jay is confidence-building; 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, the aim is to get a child and their family to the point where they don’t need a support worker anymore, by gradually reducing the level of intervention to allow them to become self-reliant.
With the right support, the change in Jay’s 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 kids with VI, complete with raised illustrations.
“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.”
It’s easy to think that this early success means that the hard part is over, but of course this is far from the case. Children like Jay will still face hardship and disappointment – after all, despite their vision impairment, they’re still kids or teenagers, and they have all the issues and problems that their peers do too. But as Heather says, there’s no reason why Jay’s horizons need to be any less ambitious than those of his 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 I think he believes it now.”
Mandie Wright is a Family Engagement Worker with the Family Support Service at the Royal Society for Blind Children (RSBC). The Service operates across England and Wales, and is available to blind and partially sighted children and young people from birth to 25 years old: