Sense was waiting in the wings when we needed their support
Emma Cook’s 19-year-old son George uses a number of Sense services including intervenors, our Buddying scheme and our Holidays programme. Here, she explains why it’s important we help overcome the barriers faced by disabled people and their families.
Facing barriers from the start
My son, George, has CHARGE syndrome. CHARGE is a rare genetic disorder that can affect many parts of the body and how it functions. In Georges’ case he is profoundly deaf, has problems with his eyes, has autism and ADHD.
He has faced barriers from birth. His initial diagnosis was bleak and it was hard not to remain positive as to his future. But George has defied the odds to walk, communicate, ride a bike, etc.
As George is profoundly deaf we had to overcome a significant barrier as to how to communicate with him. With no residual hearing we were left with no option but to learn how to sign. We started by attending a local authority British Sign Language (BSL) class, and then progressed from there.
Using two languages at home
George was fortunate to attend a fantastic local Primary School for the Deaf. His signing skills went from strength to strength but at home we had to adopt a two language system for the sake of our other children who are hearing. This led to its own problems. BSL is not English. Like any language it has its own structure, and nuances. Another barrier! It is a unique situation where one member of the family communicates in a different language to that of the others.
George also has autism and ADHD which presents even more challenges. Many people, including myself, are anxious about engaging with people with disabilities, for fear of offence.
Getting support from Sense
We first got involved with Sense just after George was born. CHARGE is a recognised condition in terms of being able to benefit from their services. They have encouraged George to do far more than we would ever have done as a family.
Finding Sense has helped us overcome some of those barriers George faces. But we all have a duty to show that together we can help overcome barriers. When people unite, incredible things happen. And you can start today, by pledging support for Sense’s campaign.