On the night Nell Sutton was born, when visitors had gone home and the hospital ward was quiet, mum Rachel whispered a promise to her new-born baby girl.
Rachel had just been given the news that Nell was blind. She had been prepared for the possibility Nell could be born with glaucoma, like her dad Paul, but it still came as a hammer blow when doctors confirmed their fears had come true.
Nobody knew exactly how much vision Nell had, so as all the questions for her daughter’s future raced through her mind, Rachel made her a promise.
Nell’s diagnosis was hard to deal with, but even more heart-breaking for Rachel and Paul was the fact that she was also in constant pain. It wasn’t for another six months and numerous operations later that they began to see a smiling, laughing, happy little girl, free from agony.
But Nell had lost her sight completely in one eye and had little vision in the other. At hospital in Birmingham, consultants said the complexities of Nell’s eye condition made her one in six billion. They were also told they didn’t know how stable Nell’s eyesight would be as she grew up.
Early support from Guide Dogs
Nell was just one and a half, when she met Branwen Jones for the first time, a habilitation specialist from Guide Dogs. This was the first specialist support the family received.
“Branwen was so positive and just what we needed” says Rachel, “She was just so encouraging about what Nell could do. She gave us all a much needed boost.”
Even as a young toddler, Nell was showing the aptitude to begin learning how to use a cane, and she was keen to have one ‘just like Daddy’s’ so the work started in earnest.
“Nell is an amazing little girl”, says Branwen, “and the whole family are fantastic. We’ve been able to provide training as she grows which has helped her become as independent as possible. When I first started working with Nell, she was quite young to be using a cane, but she was showing all the right skills so I thought why not give it a go, and she quickly got the hang of it.”
Nell and Branwen began by learning routes close to home; to Garth their neighbour’s house, to the post box at the end of the road, then to the bus stop so Nell could walk to meet her beloved big brother Isaac when he comes home from school, and her favourite of all, to the park.
Branwen has been there to support Nell every step of the way. From teaching cane skills and everyday life skills at home, to supporting Nell and her teachers when she started school.
Nell’s school hadn’t had a child with a vision impairment before, so the support from Branwen was essential. She visited the school before Nell started and helped the staff understand how her sight condition might impact her learning and how to make adjustments that would help her. Even changes that might seem simple make a huge difference.
“The school were really supportive and wanted as much information as possible,” says Branwen. “It’s important that Nell can access the classroom and do things for herself, just like the other children. I suggested ways of making locations and materials within the classroom more accessible by using, for example, objects of reference on the front of drawers. This helps the other children too, especially when they’re young and can’t read.”
“There’s absolutely no reason why Nell shouldn’t be able to go to school and have all the same experiences as her friends. We just need to develop strategies for different scenarios and make sure her teachers and friends understand them too.”
Branwen has worked with Nell to develop strategies that mean she can have as much independence at school as possible. Such as learning how to find her own coat peg, body protection techniques to use in the classroom to protect herself when she can’t use her cane, creating a meeting spot for friends in the large playground, and putting support in place at mealtimes, such as plates with contrasting colours, so Nell can eat at the same pace as her friends and then enjoy playtime. Branwen has also provided regular training for Nell’s 1:1 teaching assistant.
Recently, Nell started to get new pain in her eyes, flashing lights and pulling sensations. It was a really tough time, as after numerous tests, the doctors delivered the news that there was nothing more they could do for Nell’s vision.
Rachel says: “We tried to be open and honest with Nell. We just have to accept that this is how it is at the moment and help her manage the pain as best we can. We try to distract and focus on positive things, like her love of gymnastics and football. Like when she turns five, she can join British Blind Sport, which she was really looking forward to."
Life skills at home
Branwen continues to help Nell out of school.
“I recently taught Nell how to use her cane to go up and down steps, which is quite a technical skill – especially for a five-year-old. But she got it straightaway,” says Branwen.
Nell dreams of being a mum one day, and while playing babies with her sister Martha she asked her mum how she would be able to pull a pram and use her cane when she’s older. “It was a good question and I started looking online at bloggers and blind mummies,” says Rachel. “I also asked Branwen for advice. We then taught Nell how she can pull the pram behind her, and she’s been practicing in the garden at home. Having her own strategies like this helps her feel confident and she learns how anything is possible when she can do things in her own way.
And just before Christmas last year, Branwen helped the family apply for a grant from Guide Dogs for an iPad, so Nell can use assistive technology for learning at home.
Like many parents, when schools closed due to Covid-19, Rachel was naturally worried about the impact on Nell’s development.
But with their regular sessions on hold, Branwen has instead been at the end of the phone to advise the family on activities they can try at home and signposted them to new online resources from Guide Dogs so they can keep learning new and relevant skills, such as fun activities to help Nell envisage and understand the two metre social distancing rule.
During lockdown, Nell has learnt to read her first words in Braille. As the family still don’t know what Nell’s vision will be like in future, they have been focusing her education on touch. “She has continued learning braille in lockdown – both English and Welsh, and it’s a fantastic achievement! She’s officially a child reader,” says Rachel.
“We were worried Nell might lose some of the new skills she’s developed, but she’s actually soared. Guide Dogs provided us with lots of resources so that we could continue to develop her skills. We’ve been playing games as a family to help Nell understand how far two metres is, but actually they’ve been really useful for all our kids.”
The family have also been helping Nell understand how social distancing might change going out in the future, and they practise at the village shop by encouraging Nell to speak up if she needs some help or can’t hear the shopkeeper through the new screens at the tills.
Back to school in the wake of COVID-19
“Nell and her siblings will be going back to school in September and I have worries for them all. But much of Nell’s learning is tactile and I’m unsure how this will be supported in a COVID-19 environment. There will also be new routes for her to learn, one-way systems and social distancing rules to observe. Nell is hugely adaptable but, like all children with a vision impairment, she will need extra support to make sure she’s ready and can cope,’ says Rachel.
Nell and her family feel fortunate that they have a great network of support around them. But Rachel is very aware that this isn’t the case for other families like theirs.
“We’re feel so lucky that we’ve had this support since Nell was little – Branwen is fantastic, as is Nell’s learning support assistant, and her QVTI. As parents we feel really supported. But we’ve had to fight for that support, it didn’t just come to us,” says Rachel.
A bright future ahead
At just five years old, Nell is thriving. She’s confident, determined and full of hopes for the future.
All the skills Nell is learning now to build her confidence and independence will set her up for a bright future. Nell may even go on to become a guide dog owner, and if she does, the independence she is learning now with Branwen will have been the starting point for another amazing partnership in her life.