FROM THE CAMBERWELL QUARTERLY

Camberwell resident Jessica Moxham tells of her experience of raising her disabled son and writing a book about it

My eldest son, Ben, is 13. He loves gameshows and history podcasts, hates dogs, and is disabled. My memoir, The Cracks That Let the Light In, is about the first decade of being his mother and what I have learned.

From the moment Ben was born things didn’t go to plan. He was very unwell, and couldn’t feed. We were told he would be disabled and the early months and years were a crash course in learning how to look after him. I not only had to learn to be a parent, but also a nurse, physio, occupational therapist and speech and language therapist. We became proficient in tube-feeding and medical language and got very little sleep. It was all a huge shock and nothing like what I had imagined of becoming a mother.

The hardest part was that Ben was miserable a lot of the time and we couldn’t make things better for him. All of the people around me had babies who fed and slept, started to hold their heads up and learn to sit. Ben couldn’t do any of those things. But I thought he was the most beautiful baby in the world and we worked out how to make him laugh. As he got older he chuckled at jokes, loved books, and squealed with joy when we swung him high.

I knew almost nothing about disability before Ben was born, so his life has been a rapid education for me. Because Ben can’t talk people assume he can’t understand, but he does. People think he doesn’t go to school and can’t read, but he does, and he can. Ben can’t use his fingers to point but he uses his eyes instead to look at what he wants, and now he can look at symbols to answer 'yes’ or ‘no’ to questions, or to control an eye-gaze computer.

As I learnt more about disability activism it chimed with what I was experiencing – that the problems we face are generally not down to Ben’s body, but the way people treat him and us. It took months of stressful negotiations for Ben to get a place at a school that suited him. It took hours of phone calls and emails to get the benefits and support from social services that he is entitled to. He often can’t be involved in things because his wheelchair can’t get into them. It is also inevitable that his and our lives are disrupted by the 150 appointments that he has each year.

I wrote my book because I don’t often read accounts about disability and parenting which are honest about the challenges but also celebrate the joy. Ben needs lots of help from carers, but he is not a passive recipient of support. He has strong views about what he wants to talk about, where he wants to go, and what he wants to watch. He laughs easily, has beautiful relationships with his brother and sister, and wants to listen to The Hitchhiker’s Guide to the Galaxy. Our family is made unusual by Ben’s disability, and that sometimes makes things complicated, but in other ways the issues are the same ones that all parents are negotiating. Ben isn’t always our most tricky child!

The feedback from readers of the book has been a mixture of people gaining an insight into a family like ours (Emma Barnett of Radio 4 Woman’s Hour said it ‘Totally opened my eyes. So much love in these pages.’). Parents of disabled children tell me they feel seen by reading about a family like theirs.

People often apologise to me when they find out my son is disabled. My book is an attempt to demonstrate why this is so off the mark. Being Ben’s mother has changed the way I think about everything, but it’s a story of love and frequent fun. His disability isn’t bad or sad, it just is and I’m lucky to be his mother.