When you’re given the label PMLD, it is based on you having profound and multiple disabilities. Unfortunately, this also means that children in the PMLD class will inevitably get ill and die. During my few years at special school three classmates died, and since I left there have been more.
Children labelled with PMLD are also assumed to have a profound learning disability, which usually means that they haven’t been taught literacy and don’t have a means of independent communication (I’ve written extensively on this elsewhere). Without the means to communicate, grief is very difficult to bear, and if people around you think your academic label means your unlikely to understand then it makes it harder still.
Below is a triolet poem I have written on this:
Thankfully, this situation is beginning to shift as some people begin to realise that PMLD students are often mislabelled, and with the right support can communicate (there is still a very long way to go on this, which is why my charity Teach Us Too is so important).
One person who does believe in the abilities of her ‘PMLD’ students is Emma Maskell-Ludlow, who wrote in an article for the SEN magazine about a pupil in her class who:
‘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 person I am privileged to call a friend is Sarah Helton, who through her work with SEND and bereavement is calling for equality in bereavement support.
Below is an interview which she kindly gave me into her work, I’m sure you will find it as interesting as I do.
Last time I met with Sarah Helton, in April 2018