Katie and her family from West Sussex started creating a RIX Wiki in June 2016 when the family were invited to be part of an exciting pilot scheme trailing the benefits of multi-media advocacy.
Through having the RIX Wiki the family discovered that Katie’s’ vision wasn’t completely corrected by wearing glasses.
At a routine optician appointment Katie’s mum Rachel asked the optician how she could visually show Katie’s school how her visual impairment affects her. The optician placed lenses that replicated Katie’s vision without glasses on Rachel’s eyes and Rachel could not see any of the letters on the board. The optician then placed the lenses that replicated Katie’s vision with her glasses on and Rachel had to really concentrate to read the top line of letters on the optician’s board. Katie’s mum was shocked to learn that Katie could only read the 2nd/3rd line down, as nobody had previously explained to the family how Katie’s vision would affect everyday life and learning. Any struggles had previously been put down to cognitive ability due to Katie’s diagnosis of Down syndrome, whereas now it was clear that her vision also had a large part to play.
“I didn’t realise that she couldn’t see the second line clearly, as she lives in a world of fog.”
Rachel, Katie’s mum
The family decided to dedicate the first Section of the RIX Wiki to Katie’s visual impairment. It was important to the family that those working with Katie could understand how she sees the world and how best to support her.
Katie’s mum got in touch with Dr. Maggie Woodhouse at Cardiff University, an expert on Down syndrome and how visual impairment affects education and daily living skills. The family received literature about how Katie sees the world as people with Down syndrome struggle with contrast and clarity of vision. This information went straight onto the Wiki along with her suggestions for the font and size that Katie’s resources should be enlarged to. Dr. Woodhouse also sent the family a filter which replicates the best that Katie can see the world. This meant that if you can’t see something easily whilst placing the filter over your eyes then neither can Katie. The family were able to use the filter to make videos of homework that Katie had been given to show how Katie sees it and the difference it makes if the wording is both enlarged and presented in bold font.
Learning about the RIX wiki and using the function of presenting these vision videos has had a big impact on securing the right support for Katie. After sharing Katie’s Wiki with all the school staff modifications and adjustments were made and a referral to Sensory Support was supported.
“If I had just written an email trying to explain about Katie’s vision, the impact and outcomes would not have been the same. Staff would have questioned me as they can see Katie in lessons looking at the board and just put the slow pace of copying/reading down to having Down syndrome”. Rachel, Katie’s mum
Katie’s GP was also invited to view the wiki and a low vision assessment followed, which in turn gave Katie a referral to the ROVI (rehabilitation officer for the visually impaired) Team. Katie’s ROVI was called Mark and only had experience of working with adults with VI, not children with SEND and a VI, so he also was invited to view Katie’s Wiki, before he came to meet Katie.
By then Katie had made a “welcome” video and the Wiki was personalised in pink, Katie’s favourite colour. Mark looked at the Wiki prior to the first meeting and noticed Katie’s passion for pink and although he didn’t own any pink trousers, he did wear a nice burgundy pair of jeans. He also was able to get a good picture of who Katie is as a person and that if Katie wasn’t as bubbly as her welcome video and had her head down that it meant that she was understandably just a bit shy, and not reacting in this way because she has Down syndrome and “that’s what they do”. He also picked up on her passion for baking so the assessment started in the kitchen and they talked about baking and Mark brought a few gadgets and suggestions that would make baking easier for her. The result was that Katie wasn’t shy or nervous and they struck up a great relationship from the beginning and when it came to the symbol cane training, Katie was no longer nervous.
“I was introduced to Katie’s Wiki page by her Mother Rachel. Rachel thought it would be a good idea for me to have a look prior to my visit with Katie. I thought it was a really good way to gain a wealth of information about Katie that would have taken so much time to obtain face to face. By simply logging on to the page I could access Katie’s low vision assessment and see videos on how her eyesight affects her ability to read print. I could then easily access a link to what Katie likes to do in her spare time, school life, and aspirations for the future. I feel that it gave a great insight into Katie’s life and from a sight loss point of view allowed me to see her low vision assessment including what text size she can read. All in all it was a great benefit to have access to this.”
Mark Brownlow (ROVI)