Emma Maskell-Ludlow explains how high expectations and some technical know-how have made a huge difference to her pupils with PMLD
Being very excited about the prospect of having a class consisting of students with profound and multiple learning difficulties (PMLD), I started the 2017/18 school year at our special school with great enthusiasm. I followed the usual model for PMLD students, with a sensory curriculum focused mainly on improving communication and functional movement, and I introduced a new assessment system that we found to be effective at assessing students on achieving skills that would be useful to them in the future. I have always followed the least dangerous assumption, which is that children with PMLD understand everything but cannot yet tell us.
Things were going well and every student had personalised targets that they all made progress towards. But then things started to get even more exciting; after a taste of being able to control things with switches and simple voice-output communication aids (VOCAs), my students wanted more. And I found out, as I’d suspected for years, that each student had a far better understanding of the world around them than people assumed. The next step was to unlock them.
I enlisted the help of our school’s speech and language therapist, Helen Dixon, to see if some of my ideas for different students were appropriate. Helen explained how each idea might work in practice and encouraged me to try them out. So I trialled lots of different methods of augmentative and alternative communication (AAC) with each student until I found one that worked for them.
Opening up communication
Learning the different AAC methods took time and patience from my class team as well as from the students themselves – especially finding ways for them to access the devices using different pieces of physio equipment – but the results were beyond anyone’s expectations. Using trial devices with access methods for auditory scanning, touch-to-talk and eye-gaze, non-verbal students thought to be cognitively well below their age told us things on a par with their verbal peers. In six months, we went from students who just used yes/no eye pointing and selecting objects to make a choice, to a situation where we were requesting funding for three of them to have their own VOCA.
A fourth student in my class also met the criteria to get her own eye gaze system but, sadly, she has now passed away. Before this happened though, she showed the world how intelligent she was; despite being the most profoundly physically disabled child in the class, she picked up the new technology the quickest and could tell us when she needed medical interventions before it was visibly obvious; she could ask us to put on her favourite films, tell us what she liked and disliked, ask for more of an activity, tell us how she felt and let us know how we could help her if she was uncomfortable. We showed her how to use the “rest” function and the “clear” button on the device, and after one demonstration, she could do it whenever she needed to. She could also play computer games with her eyes, which she really enjoyed. I fondly remember the time when I asked her if another student could borrow the device for five minutes and her initial reaction was “no”, followed by a disapproving look. After reasoning with her, she then said “Maybe,” and when I said “you can have it to play games with straight afterwards”, she finally said “Yes”. This young lady who needed help with every aspect of her life finally had a voice and used it to gain some control over what happened to her.
After almost two academic years since our PMLD class came together for the first time, the students now have much greater power to control what happens to them. They can provide opinions, ask questions, comment on things, tell us how they are feeling, let us know when they are tired or unwell, and so much more. One young lady, armed with two switches, answered yes/no questions that showed her understanding was way beyond what medical experts had always said. One day several months ago, she helped to choose her own outfit; her carer showed her a series of subtly coloured outfits that she thought suited the day, and after every one, the young lady raised her “no” arm and looked cross. When the carer showed her a brightly coloured outfit, however, she gave a beaming smile and raised her “yes” arm. This young lady currently finds it more difficult to raise her arms and gets frustrated when she can’t use them to say “yes” or “no”, so we are working on helping her learn some alternative yes/no responses so that she can still use auditory scanning.
A young man in the class has absolutely flourished over the past two years and uses his eye gaze device both at school and at home. He recently said “I love my mum” to his mother for the first time ever, because he had the means to voice this. He also brought us all to tears by telling us how much the passing of another of his classmates affected him. Despite having a vocabulary limited to what is currently on his device, he found a way to tell us how sad he felt, how much he liked his friend and how difficult he was finding the situation. It’s hard to imagine what it must have been like for him before he was enabled to express his emotions.
Another young lady who now has her own eye gaze device enjoys using it to interact with people at home and school, and she has recently discovered how to take selfies. She even chose her own voice with the help of her twin sister; it sounds very regal and she loves it.
Perhaps it is time to phase out the PMLD label, which carries with it low expectations and assumptions about poor cognitive impairment. Maybe the phrase “complex access needs” would better suit these young people, because many of them can learn on a par with their peers if they are given a chance; they can do so much more than so many people think they can.
I would strongly encourage anyone who works with students under the broad umbrella of PMLD, to do as my inspirational speech and language therapist colleague suggested and just try things out. Be creative, try lots of different types of AAC, and find ways to help individuals overcome their access barriers. There is nothing to lose and everything to gain. Technology, professionals with sky-high expectations willing to take risks, and unwavering support from families is all it took for my students to have a voice; now everyone can hear them roar.
About the author
Emma Maskell-Ludlow is a class teacher at Sandside Lodge School in Cumbria, a special school for pupils with learning difficulties, many of whom have additional and complex needs.