I still can’t believe that nearly a week ago I was sat alongside other finalists at the Shine a Light Awards ceremony in London, organised by Pearson in partnership with The Communication Trust. I had been nominated in the Communication Champion category by Becky Goddard-Hill, parenting author and blogger and was completely overwhelmed to win two awards on the day.
It was an unforgettable experience, but really the recipient of this award should be my son, Charlie, who is 10 and lives with Angelman Syndrome. He has complex needs and is the real communication champion!
The journey to knowledge
My journey with Charlie to enable him to have a voice has been a challenge, but it has also brought with it such hope and moments of pure joy.
It has given me first-hand experience of what it is like to have an incredible child with complex communication and learning needs and one that requires the use of an Augmentative and Alternative Communication (AAC) device.
It is imperative to me that Charlie’s voice is not only developed, but importantly that it is respected and supported. Charlie will never have functional speech, but that does not mean that he does not have a LOT to say!
Communication is more than wants, needs and choices. It’s about humour, opinions, jokes, complaining and manipulating, telling stories, protesting, relaying information and asking questions – it’s about personality and connection.
I am passionate that my son has access to a huge and varied vocabulary that is organised so he can be an autonomous communicator and express what HE wants to say. I can be his microphone, but I cannot be his voice.
Through sharing Charlie’s incredible achievements, I’ve been able to help other families in similar situations to start their AAC journey. Through creating bespoke communication books (PODD) for children and adults, those individuals now have access to a robust communication system.
With that in mind, I often create new symbols for ‘on-trend’ words to add to Charlie’s communication systems and I share these within the AAC community too. As a self-confessed symbol geek, I am never happier than when I’m creating a highly motivating symbol or communication board for an individual.
My ‘hangry’, ‘floss’, ’dab, and ‘mic drop’ symbols proved so popular that they were adopted by AAC supplier, Boardmaker. They are now available in their global symbol libraries and have inspired the creation of new slang symbols too! My ‘Baby Shark’ pool float communication kickboard has added extra fun stuff to talk about whilst swimming, although I’ve probably not won myself any fans if communication partners have had to sing that song many, many times.
Reaching out to others
My journey has enabled me to support my local community in Nottingham. I have been lucky enough to present at specialist literacy study days across the country, host two specialist AAC courses and even organised my own conference for families and professionals on AAC bringing together keynote speakers, local providers and AAC suppliers.
I have also organised outings that have been open to all individuals with complex communication needs and their families such as visits to local farms and funfairs. They are important opportunities to raise awareness about what it means for a child to use AAC.
A supportive community can make a huge difference to life chances and the feeling of acceptance. It is vital to include siblings on these days too since they can learn new skills and connect with new friends who are facing the same challenges.
My next challenge is organising an innovative, fun and educational AAC and literacy camp next summer for young people living with learning disabilities in the UK. This will be based on existing residential summer camp models in the US and Australia.
The camp will be designed for children with learning disabilities who use speech generating devices as a primary communication mode. The aim will be to improve their use, becoming more competent communicators in a fun and relaxing atmosphere with a focus on literacy and accessible learning. Training and mentoring opportunities will also be included in the programme.
I often talk about my ‘Tribe’, the AAC community is incredibly uplifting and supportive. In truth, there are many parents across the globe who are just like me. We advocate and fight for our loved ones to have access to a full life with support, not a life full of support. Communication is the key to that goal.
Giving my son a language that he can observe, copy and then learn to use himself gives him power and influence not only in daily living but in important future decisions. It’s not an easy task, especially since he lives with a complex body which compromises his learning, vision and motor skills along side a host of other challenges, but it is worth it. For me it will be my life’s work.
Young people achieve so much when they have cheerleaders. I believe so passionately in not reducing language down to a handful of words that someone else has chosen. By giving access to a rich and varied vocabulary, which is carefully structured to make communication as efficient as possible, your message to that person is loud and clear – I believe in you!
When Charlie, and his brilliant peers who live with complex bodies and learning needs, are presumed to be competent, are held to higher aspirations and have access to ALL words and expressions, they truly shine.
To contact Jules, or find out more about her work, email firstname.lastname@example.org
For further information about the winners, head over to 2019 Shine a Light Awards or check out the latest Twitter feed.