Here is a situation you will probably have encountered: an adult holds out two toys to a child, asking, “Which do you want to play with?” The child indicates one or the other and is then given it to play with.
With regards to children with profound and multiple learning disabilities (PMLD), often a critical mistake is made within this simple conversation. The mistake is not the offering of that choice. The mistake is in interpretation of their response to the offer as a choice.
A child making a choice in that situation observes the two objects with the relevant sensory systems, then takes those observations to their memory to dig up previously experienced objects that are related to the two objects being offered. They inspect memories of those similar objects for their value: are they positive memories or negative? Then, in response to the holding out of those two objects, that child understands that the action of being offered, and the words spoken as that offer takes place, relate to a time in the future. They understand that there is a future that is coming, and in that future, they may get to interact with one or other of these objects. They then cross-reference this with their knowledge of the past to predict into that future what their potential enjoyment of each object might be. They compare this against the other object and make a decision, indicating this decision by reaching out with a hand or pointing with their eyes.
If they can meaningfully do all of this, then I would question whether they have profound learning disabilities at all. It may be they have profound and multiple barriers to learning in the form of their physical disabilities, which mask their cognitive abilities.
High ambitions?
Occasionally, I meet people who think believing a child with PMLD has cognitive potential beyond that which they've shown, is a sign of having 'high ambitions' for all such children. It is not. It is a sign of judging life based on cognitive capacity.
There are people whose profound learning disabilities are very, very real and claiming we're 'being ambitious' for them by trying to teach them things out of their reach, is just a route to them leading an inaccessible life. For example, a friend of mine used to work with a girl who only had the very top of her brain stem, a brain scan of her head would quite literally have shown it to be empty. She did not possess 'untapped potential' that was being restricted by teachers with low aspirations. She had only the abilities that are contained in that first little bit of the brain. I have another friend who, for their own survival, had to have over half of her brain removed; it simply isn’t there. Does this mean these people are less? No. If I do not aspire to teach them to read, am I in some way failing them? No!
Having high aspirations for someone is meeting them where they are, and helping them to go higher if they can. And if they cannot, it is helping them to get the most enjoyment out of where they are.
Making choices their way
Someone who doesn't possess the cognitive capacity to go through the choice-making processes I described above can still be supported in choosing. However, we need to understand that a meaningful choice does not happen in the moment for them. A meaningful choice for them is made in a succession of nows.
Here is an example:
I have a smell tube – it’s a spectacular piece of sensory equipment! What it is in fact, is a rinsed-out Pringles container with a yoghurt pot wedged halfway down and holes perforated in both ends. I store inside one end the smell of rosemary, and in the other end, I have some potpourri which can only be described as pink smelling!
When I offer this resource to one of my friends, they experience it in the now, exploring it, finding out that one end smells different from the other. Perhaps after a time exploring, they settle on holding the end they like the smell of best to their nose.
The next time I offer them this resource they do not know anything about it from their past experience, they greet it again in the now, and explore it as they did before. I notice that the same end ends up at their nose.
And the next time the same.
And the next time the same.
If, over multiple 'nows', I witness the same choice being made, then I can take this as a preference. It is as likely that over multiple 'nows' I witness multiple responses and no clear choice is made.
Consistent presentation of choices, paired with close observation of responses, can enable those of us who access a world of memory and who anticipate a future, to enact choices made by people who occupy a succession of 'present moments'.
If my friend consistently rejects the pink smell I might begin to wonder whether this is an expression of a preference for rosemary or simply a dislike of pink. I might take the rosemary smell and pair it with a different scent for them to explore and maintain my observations. In time I might learn that they love citrusy scents but are not a fan of florals. Then when I am out shopping for their shower gel I will make their choice, enabling them to have that wonderful immersive sensory experience of a shower enhanced by a fragrance they enjoy. A small decision in my world but a massive impact in theirs.
Choice for people with profound and multiple learning disabilities is not made in the moment, it is made in a succession of consistently presented and carefully observed nows.
To gain insight into what types of sensation are likely to appeal to people join Jo on her Develop Your Sensory Lexiconary CPD accredited training: www.TheSensoryProjects.co.uk/develop-your-sensory-lexiconary
Also read
- Coronavirus: Sensory resources for children with SEND
- Sensory toys don’t work on their own.
- Hayley’s EHCP Save-Our-Sanity SOS plan
- SEND risk assessments and preparing for a return to school (or not)
- Measure for measure: how do we judge the quality of a life?
- SNJ In Conversation: What legal rights do disabled children have left under the Coronavirus Act?
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Joanna is a qualified teacher who has taught in mainstream and special school connecting with pupils of all ages and abilities. Joanna has also worked in a consultancy capacity to support schools to further their provision for children with additional learning needs. Since setting up The Sensory Projects Joanna's work has expanded, and she regularly works with adult care providers, heritage settings and families. Joanna draws on experience from her own life as well as insight from the research world and her professional background to inform her work. Joanna has family members with physical disabilities and neurodiverse conditions and has also been a foster carer for children with complex disabilities. Joanna is autistic and this enables her to take in huge amounts of information on a particular topic, Joanna uses her ability to focus on the sensory world to inform her work. Joanna is currently studying for a doctorate in Identity and Belonging for People with Profound and Multiple Learning Disabilities.
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