Sense Scotland chairman Roy Cox has recently been awarded an OBE. Here he reflects on the very personal journey that has taken him, his family and Sense Scotland to where they are today.
What a wonderful world. With a two-year-old son you can only dream of, my wife beautiful, and about to give birth. How lucky can a man get?
They say life can change in an instant, and it’s true, it can. What seemed to be our normal family life would never be the same again. The little girl who was born would change our lives forever.
She couldn’t breastfeed or bottle feed. We were then told she was going to be deaf and blind. We were now alone, the only family in the world with a child that not only couldn’t hear us, she couldn’t see either. Panic!
How would we teach her, who would help us? There were teachers of the deaf and teachers of the blind but their communication skills couldn’t reach Cheryl. But then we learned of a small group of parents in Glasgow who were struggling like us and who had children with similar needs. What a relief that was. We were not alone after all.
We learned from each other and laughed together at the experiences we shared, which was a great comfort, for all of us. As a group we persistently pressured Strathclyde Regional Council to provide a service, and they did. This was to be the first school in Britain for deafblind children. But while this was education funding a mandatory service, social work proved to be a much harder nut to crack.
Unfortunately, although it shouldn’t be, 30 years on it is still heart wrenching for parents to try to obtain funding for the specialised services that organisations like Sense Scotland provide. It takes a lot of time, patience and recognising body language to realise what a person may be trying to communicate.
Cheryl learned how to communicate through repetitive touch signing and fingerspelling, coupled with experience of what gestures she would make in certain circumstances. Some we learned very quickly. A head butt or scratch usually meant: “No, don’t do that to me!”
Others like “I love dad” took years and years but they were well worth the wait.
We have learned with patience that Cheryl can swim, ice skate, ski and ride horses. Cheryl has worked in the family business for the last couple of years one morning a week and consistently asks for more work. What an inspiration.
Food, drink and socialising are her favourite pastimes. If you meet her, please ask to touch her hand and let her touch yours, she has a fantastic memory. It will help fill her day and let her know that there are many people around her
Cheryl’s first sample of whisky provided a facial expression never to be forgotten. A quick slurp, extreme facial movement, followed by slow relaxation as it slipped down. This was quickly followed by the gesture for more and an expression of pure sensory joy. What a wonderful world…
To assess the use of Cheryl’s funding, a review is carried out annually by Sense Scotland and Social Work. However, Cheryl was never impressed with our translated signing of events. So her fantastic team of carers led by her manager devised a demonstration of Cheryl’s activities and progress. Music accompanied the tour and objects were used to represent her daily activities and work. Her gardening, music and swimming were all demonstrated, not by staff, but by Cheryl using these objects and gestures. Pictures around the walls illustrated the objects and the relevant activities for all to see and experience. Cheryl was carrying out her own assessment and loving it, followed of course by a glass of fine smelling and tasting wine and chocolate. Cheryl and Sense Scotland have shown us what a wonderful world it is when we work and communicate with one another. We really hope more and more people will be able to use Sense Scotland’s services and expertise. And when we are no longer able, we know that her wonderful support staff will love and care for Cheryl as much as we do.
• Roy Cox OBE is chairman of Sense Scotland. Formed by families whose children were congenitally deafblind in 1985, Sense Scotland’s focus on supporting people through communication-led approaches has enabled the charity to work with people who have a much wider range of support needs. Today, the children, young people and adults who use Sense Scotland’s services, have communication support needs including autism, learning disabilities and a range of sensory impairments and physical disabilities.
• To contact Sense Scotland email: firstname.lastname@example.org
• Find out about Sense Scotland here