Guest post from Becky, who works in Scope’s fundraising department.
Being based in Scope’s office in London, it’s easy to become detached from the day-to-day reality of what life is like for disabled people and their families.
Amanda and her husband Neil found their lives changed forever when their daughter Livvy was diagnosed with autism and severe learning difficulties at 22 months. A freelance journalist at the time, Amanda had to change direction and, in her own words, she was given “a new path”.
Amanda now works part-time for Scope as the Coordinator for Face 2 Face in Brighton and Hove.
When we sit down in her living room and start chatting I am immediately struck by Amanda’s resilient character. As well as Livvy, now 13, Amanda has three other children aged three to 11, works for Scope and is a governor at two of her children’s schools.
But despite her obvious strength, I’ve no doubt that things must have been very difficult for Amanda at times.
Livvy developed epilepsy aged five and has tonic seizures every day which Amanda says are “really horrible”. This means that Amanda and Neil have to monitor Livvy during the night, taking turns to care for her.
Recently Livvy has had to spend more and more time in a wheelchair, and has lost some of her communication skills. But it is the spontaneity of Livvy’s seizures which seem to have the biggest effect on Amanda, and it is the only time during our meeting that I can sense any vulnerability in her.
Family holidays are out of the question as it would be too overwhelming for them to take Livvy away overnight. Amanda tells me that she would be really nervous about something happening, and so they use some of the time Livvy spends in their local hospice, Chestnut Tree House, as a safe holiday instead, with the family going along to stay with her.
Amanda says that getting support for Livvy from her local authority has not been difficult, because Livvy is so severely disabled. But this is not the case for a lot of the parents she meets – many of whom are struggling with the system, and have to fight for everything.
Amanda is a powerful spokeswoman for these parents – definitely someone I would want to have on my side if I was a parent of a newly-diagnosed disabled child.
When I leave the family’s house I feel uplifted by Amanda’s story. Her outlook on life and appetite to achieve positive change for disabled people reminds me why I chose to work for Scope.