I have a friend whose children have cerebral palsy. For those of you unfamiliar with cerebral palsy, it is a neurological condition that is caused by damage to the brain, before, during or after birth. It can affect people in different ways but can include muscle stiffness, problems walking, speech difficulties, a curved spine and learning difficulties. For my friend’s children, their difficulties are centred around mobility problems.
Nevertheless they are bright and sociable children who with support have been able to access mainstream education and out-of-school activities. This isn’t to say that my friend’s life has been straightforward; far from it, she and her family have had to fight for everything her children need including specially adapted wheelchairs. Even now, she needs equipment that will enable her to take her children out on her own without relying on someone else to physically help her. Even her back garden is hard to access with the lawn being approached by a flight of steps. Not surprisingly she is not looking forward to the long summer holidays and being couped up inside her house.
But neither am I. You see, I understand her frustration and slight sense of dread of the upcoming summer holidays albeit from a different perspective. My children may not have a physical disability but their autistic disorders have meant that it can be hard for us to access the world beyond our house. The way my children’s brains are wired up means it is hard for them to imagine new settings and to deal with changes in routine. Coupled with their social difficulties and sensory sensitivities, my children’s behaviour can become challenging and difficult to manage. Going out is not something we can do spontaneously and going out to new places is not something we can do at all, unless we plan carefully. Even then there is no certainty that we will succeed in getting out of our front door.
Going out is not something I particularly miss during the winter months because in some ways we can be like everybody else; snuggled in front of the fire, watching videos and playing computer games. It is during the warmer months that ’going out’ takes on a particular poignancy when the days become longer, people start talking about holidays and TV adverts tempt us with the exotic possibilities outside our homes. It’s then that I am painfully reminded that my family is different, that my role as a mother is different and going out as a family is not something that we can easily accomplish.
Nevertheless speaking to my friend the other day reminded both of us that though we have children with different disabilities, as mothers we share similar difficulties and frustrations. It was a welcome moment that showed me how ‘shared experiences’ like this have the potential to unite families across different disabilities. So often specific conditions and disabilities go off and do their own thing and it becomes easy to forget that the impacts of a particular disability are also experienced by families dealing with a different disability.