Damien Lane takes us through his thoughts behind his latest book Kit Kats and Fishing Rods, a journey through the struggles and joys of having a severely autistic son.
I could have lived my life without children. My gran was a big influence on my life. On her deathbed she said she never wanted children. It did not feel wrong for her to say that. She was a really clever woman who read Dickens in her spare time. Only her birth in 1905 precluded her from the kind of education and opportunities that my daughter has enjoyed. Naïa was born in 2005.
My gran would probably have been a career woman and, I doubt, would have had any children.
I had a really successful career when Alex was born. All children change the lives of their parents. Alex was no exception, and was to have the profoundest impact on the lives of all around him. From my perspective, that impact was all the greater for not really being ready for children. Like my nan, I could have lived my life without kids. However, unlike her, I had a career.
The real irony comes in the fact that, when I look back, I would want more time with my kids. A hundred years on I was in almost the opposite situation.
Kit Kats and Fishing Rods is the culmination of many years thinking about gender roles in our society. As a teacher, I have taught mainly subjects that appeal to girls. I have certainly contributed more to helping girls getting places at university than boys. As far back as the mid-nineties I set up a girls’ football team in my school.
Becoming a dad gave me a whole new perspective. It did not change everything I had done before, but it did make me think about the role of men in our society. And when it became clear that Alex was severely autistic it added a whole new level to that thinking.
The severity of the autism did not become really apparent until Alex was about two years old. We had a superb health visitor who was one of the first to suspect; Alex spoke only a few words, and there was little interaction with people. Though Alex is very affectionate with people he does know, it’s one of those ironies, I guess.
All this meant having to find an appropriate school placement for Alex. He needed the specialist attention that his condition required, and he had to have the appropriate level of staffing. Still now, as he approaches the age of nineteen, he needs two adults with him at all times.
As a family we have had to make so many adjustments. Sometimes they are small such as a different light switch in Alex’s room to prevent him from turning the light on and off late into the night. Sometimes they are major, such as Naïa having to sit in a separate room to eat as Alex might lash out at her at any moment.
Trying to convey all this has been a long road and this book has changed much in form.
Originally, the idea was to write an MA thesis. The lecturer who was to be my tutor for the thesis said there was a lack of literature concerning the role of men as carers. I could afford neither the time nor the money. Being a carer and working full time is hard going. My wife, Dilek, suggested I write anyway. So, I did.
Kit Kats and Fishing Rods spans the time from Alex’s birth in 2003 to the time he moved into supported living in 2021. It tells of how I had to change from being career focussed – very much something my mother and my schooling had drubbed into me – into being more focussed on my children.
I would really like to see this being done more. Parents, regardless of gender, have to know that a focus on children is the most essential thing. Anything that can contribute to that is a positive. It is my hope that, in some small way, my book can do that.
In the dedication I mention two mums and two dads of disabled children. The work they do is no different. Highlighting my role as a father is a personal story that is one side of a many faceted subject. But is one that is under told and undersold.
Many of the experiences recounted in the book are very much within the realms of experience of most parents who have autistic children. Alex loving Thomas the Tank Engine and trying to walk in exactly straight lines trying to emulate his hero. The fixations and repetitive behaviours can be extremely challenging but, at times, they can bring joy. Before he lost his sight Alex could build jigsaw puzzles amazingly well, and quite complex ones, too. He showed a patience that was quite remarkable.
At school, Alex was quick to learn his alphabet and numbers. He learnt to spell his name and other words like mum and dad. His skills on the trampoline remain quite amazing. Perhaps the greatest thing about Alex is his understanding of French and English. This is a young man who cannot speak but can follow complex instructions in either language. It still feels more natural to speak to him in French.
Other aspects will be less familiar. The story of how Alex lost his sight is one that will burn in me till my dying day. The impact on the life of siblings, like Naïa, is something we need to hear more of. So, fittingly, she has the last word in the book.
There is, I hope, a lot of joy in the book. When Alex learns how to swim, when he learns how to use the toilet by himself. There are tales of segregation and unpleasant people. There are heroes, men and women alike, who have made Alex’s life substantially better. The care team who look after him now are truly diverse and dedicated. I love that.
I wanted to write this book so that I could put on record how Alex has changed my life and how he has been such a tremendous source of joy, regardless of all the difficulties. I really hope that you, the reader, will feel the same.
It is said we all have one book in us. There is so much more to be said on this subject that I hope, one day, to tell the stories of other men in similar situations.
To find out more about Damien Lane and his son Alex, and to purchase a copy of Kit Kats and Fishing Rods, click here.
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