The Cracks That Let in the Light

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Reviewed by Jackie Mucklow

I really enjoyed this very moving account of Jessica’s life from the birth of her son Ben to his tenth birthday. A very difficult journey to navigate which no one unless you have friends with or are part of a family with a disabled person can prepare you for.

Having been a mother and full-time carer of my son Charles, who sadly died on the 3rd February 2021, I could empathise fully with Jessica and the battles she found herself having both physically and emotionally.  Unlike Jessica, I brought up Charles on my own and didn’t marry until Charles was 10 years old, we had two further children together a girl and a boy.  I found Jessica’s observation key when she mentioned that of “being an ally to Ben to facilitate what I think he wants and needs, rather than what I want or what I think will make him fit in better.” 

Jessica also highlights how as a parent of a disabled person having to summarise your child’s life story from their birth and their first years of life, which you re-tell thousands of times.  This aspect is emotionally draining and often is said in front of the child which over the years builds unnecessary anxiety in them.  Professionals dealing with disabled children who have no voice or limited understanding maybe consider reading up the notes of such patients and only discuss the positive aspects during the visit and write down the hard information that needs to be relayed about the child.

I really loved the suggestions of Books like Michael Rosen’s – Little Rabbit Foo Foo and his video’s, along with Poo Bum by Stephanie Blake. As I currently work as a TA in a special needs school, I am always looking for new ways to communicate.  Jessica asks a very good question on page 217 “Can we teach our children to react to unfamiliarity with kindness?” 

The book covers life with carers; them coming and going and how hard that can be on all the family, but more importantly, on how that impacts Ben as they are required to do more intimate tasks as he matures.   The book is about coming to terms with the reality that your child will always require assistance; he will need people to help him access the world and keep him fed, hydrated and clean, as Jessica put it. 

I do wonder though, how someone might feel reading this book, who doesn’t have a loving husband to help and a family close by who are very supportive and loving, the amount of care that is provided and the ability to design a house around their son’s needs.  I felt that they might feel that they are failing their child as they cannot provide their children with the same opportunities as she can.  That said, I am grateful that Jessica has shown how difficult it was for her even with all the support and maybe Jessica will create changes both tiny and massive to change the way that disabled people can take part in the world around them.

I hope this is of some help, thank you for allowing me the opportunity to read this book.
Jackie Mucklow

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