Giving non-verbal children a voice

Rosie Bovaird’s 12-year-old son Lucas suffers from a rare condition called Phelan-McDermaid Syndrome (PMS) which means he has not developed the ability to use language in the normal way.

Lucas, from Portstewart, a pupil at Rossmar in Limavady, is non-verbal, has severe learning difficulties and is also severely autistic.

His parents are campaigning to raise money to help develop a special teaching app that allows their son and other non-verbal children to communicate by selecting words identified with pictures on a touch screen device like an iPad.

By pointing to the relevant image Lucas can tell his parents what he wants - a vital way of communicating for a little boy who would regularly scream in frustration because he was unable to articulate what he desperately wanted to express. Now if he wants an ice cream or to watch a particular DVD he has a way of communicating that he did not have before - by selecting words through identifying pictures.

And because of the app Rosie and her husband Nigel have helped develop, around 40 pupils at Lucas’s special school who also have communication difficulties have also been gifted with a new way to communicate.

“Lucas is very visual and loves pictures so the first thing we did was teach him how to point to pictures of things on a screen. So if we are in a chip shop Lucas was able to point to a picture of a burger and we knew what he wanted. So we started the app from there.

“Lucas is such a lovable wee man but he couldn’t learn without being able to communicate and that’s why development of this app is so important for children like him who are non-verbal.

“His frustrations are more limited if he can say point to a banana and we know what he wants whereas before we would have had hours of screaming because Lucas cannot tell us what he needs or wants.

“Now when we were on holiday and in a shop he was able to point and say ‘I want an ice-cream please’. Before he would have had a meltdown for hours, just screaming, and there was nothing we could do. This was how it was when he was younger because he had no way of communicating at all. Lucas was often so frustrated he would bite others. The whole family struggles when one child has a condition like this. Now he’s the happiest wee man and hasn’t had a meltdown in a long time.”

The pioneering teaching system is all about helping non-verbal children to have a ‘voice’ by giving them a workable system of words and pictures via an app that mum Rosie has helped develop.

“The teaching system has allowed our non-verbal son to communicate over 400 words regarding food choices, places to visit and DVDs to watch, amongst other things,” says Rosie. “He identifies animals, transport, colours, numbers and shapes. We want to help other parents, teachers and most importantly other children by developing this teaching app and providing a service which is currently not available.

“Our special needs journey has taught us that it is impossible to learn if you cannot communicate.

“Ten years ago we decided that we would start our own project to help our son.

“We started to develop the LUCAS Education app and were able to facilitate it through the use of a voice output app called Proloquo2Go.

‘‘There are many voice output apps available, although our journey has provided us with little guidance on how to use them. We have found this a common topic with other special needs parents, supporting teachers and therapists. Hence our reason for developing a teaching programme which provides a step by step plan on how to encourage our children to use the device.”

To develop the teaching app Rosie and her husband Nigel are seeking the support of local primary schools in promoting awareness and helping to raise funds so that they can do this effectively to help non-verbal children have a vital way to communicate, limiting the frustrations that they feel in not being able to talk in the normal way.

So far several schools have held fundraising events - to date around £12,000 has been raised - to help with the project and Rosie hopes they will reach their target of £25,000 that will allow them to develop a teaching system to help those with non-verbal children learn how to use the innovative app.

“I want to create a teaching programme on an app showing parents how to use the system which will feature so many words as pictures. There are three different stages of teaching just one word using a touch screen. We want to help parents of children like Lucas because it’s so difficult trying to find a system that allows non-verbal children to communicate. We want to develop the system for numeracy and to help children learn different shapes and so on. Without this system Lucas would just be left in a world of his own.

“We feel it’s absolutely vital that children like him are given the chance to learn by providing them with an app that allows them to access language.”

Bushvalley Primary School, Ballymoney, has pledged it’s support and will hold a non-uniform day on May 25 and also decorate and sell cupcakes to help raise money for the app. Numerous other schools have also pledged their support. Individuals and other groups are also undertaking a variety of fundraising initiatives to assist the project.

“We’ll have 42 fundraising events between now and August so we want parents out there to know what we are doing and get involved in helping us develop our app,” adds Rosie.

For more information or to organise a fundraising event to help the LUCAS-Education project visit LUCAS-Education on Facebook, email [email protected] or @lucasadmin on Twitter.