Issue 17, Page 14-15: “The shoeness of a shoe”

Most people with learning disabilities have some speech, language and communication difficulties. These can be hidden or overlooked. Everyone needs to know what good communication support ‘looks like’ and what reasonable adjustments they can expect. (RCSLT 5 Good Communication Standards, 2013)

I often think about how much we have yet to learn about how people communicate differently, and that when you are faced with a child, young person or adult who communicates in a different way to others, we can become entangled in the ‘I don’t know how to’ or ‘I don’t have time’. Yet we learn languages every day in this world – we study them, and we add them to our human skill set – we can communicate with others in different countries. So why would differing modes of communication that don’t always rely on words, not require the same level of learning and onus on our part? I wonder if that is driven more from the perspective that it’s not quick enough, or the variance is too large. But is it?

Six years ago, my eldest daughter, Ella, lost her vision as her needs had been misunderstood – her stress by this point was extreme. Fundamentally, the fact she was congenitally Deafblind had been missed until she was age seven, and this required a specific way of supporting to understand her communication and development as 95% of her incidental learning was missing. We knew she could learn, but the how had not been understood. Ella’s primary communication tool being Deafblind, is touch.

Twice a day, Ella would investigate the shoe box by our front door. In it were various items of footwear owned by the whole family. Using touch and persistence, Ella learned that the concept of ‘shoe’ came in all manner of variations: large, small, lace up and Velcro, high, low, smooth and rough. Ella had to be able to delineate via touch, that all the objects had the same function although they were all different. She persistently did this for nine months until one day, she sat in a chair stuck out her foot and said “boots!” She had mastered the task and embedded her understanding of ‘the shoeness of a shoe’, which all children do – just in different ways. It put an onus on us, as observers and educators, to learn more about this and widen our understanding of the ‘why’ and ‘how’ within learning. It removed the glass ceiling of ‘can’t learn’ and replaced it with ‘can learn’. It helped to #flipthenarrative.

What we learned, that developed our understanding of how best to support Ella’s communication, was that in the first instance, there is no silver bullet, no one ‘programme’ we could use that would cater for her very specific needs and style of learning. What we did do was to listen and closely observe Ella. By working on gaining her trust and strengthening our relationship with her, she began to show us more about what she was trying to achieve, and we began to learn how to communicate with her.

Hayley, our wonderful SaLT, was prepared to walk with us, as a partner, in every sense of the word. Hayley didn’t ‘tell’ us what to do, she actively listened (a lot) to our reflections and questions and what Ella showed her too. Small, human things, but utterly invaluable from a professional working closely with you.

Hayley – Speech and Language Therapist

I have been working with Ella, her family and her team for six years and lots has changed and evolved over these years. In this time Ella has made significant progress with her speech, language and communication skills. When we first met, she was, in essence, non-verbal, using a range of vocalisations, gestures, some signing and her body language to communicate. At times this was unsuccessful for Ella and led to frustration, miscommunications and struggles to cope with everyday situations.

The aim from the start has been to work together with the family to find the most successful way for Ella to communicate. We are well down this path now and Ella can use speech alongside signing to communicate a great many things. She is now joining spoken words together; to comment – “my clothes”, to describe – “loud” and to request – “go Laura’s car” are just a few examples. Ella is using her signs to spell names and to explore the links between spoken sounds, signs and written letter formations.

Reflecting on the last six years I feel the way we have been able to achieve this hasn’t been through focussing on technical strategies, complex alternative/augmentative communication systems or specific interventions but through keeping things simple for example:

• Building relationships with each other and truly listening to Ella so anything we wanted to try or introduce was motivated by Ella
• Ella has always loved stories and songs, so we have focussed on using repetitive lines in stories to build Ella’s confidence to expand her spoken words and speech sounds

Now Ella knows everyone is listening and she is in control of her own life, she knows she can express enjoyment, anger, make jokes, be silly, be quiet, say no, ask for something and the people around her will respond regardless of how she conveys that message. This is truly embedded total communication.

As a speech and language therapist working so closely with the family the advice I would give would be to:

• Focus on building relationships first and foremost (this has really been key to Ella’s success)
• Ensure that everyone working with the young person understands how the development of communication is progressing and what is working so they have the confidence and skills to continue this
• Repeating the child’s vocalisations in play to show you’re listening
• Offer a photo choice board so a child can point to an image to help them communicate what they mean
• Have regular discussions with other staff to share what is going well
• Build on spoken words or encourage specific speech sounds within daily activities so it’s motivational and truly embedded, e.g. getting dressed, making breakfast, on car journeys
• Understand that it’s OK to stop when something isn’t going well
• Using a total communication approach means all forms of communication are given meaning, are valued and responded to at all times which is key to progress regardless of which specific strategy you’re using

Focussing on relationships both with Ella and with each other really has been the key to the success we’ve seen and the success we know we’ll continue to see in Ella’s future.

“Relationships count for a huge amount of the success – between us and Ella, and the professionals supporting us – we work together, we communicate, and we question and re-question – so that we can be the best possible support.” – Elly