Scan barcode
A review by myjourneywithbooks
Shtum by Jem Lester
5.0
"Over the years..., I have witnessed the elevation of autism - especially Asperger's - to something almost fashionable. I'd heard autism used as excuses for shoddy behavior, as an insult, and seen it adopted as a badge of honour. This was galling to me and, no doubt, to the countless other families dealing with the day-to-day misunderstandings and devastation it could bring."
-Jem Lester
Jonah Jewell is ten years old. He is also severely autistic, nonverbal and doubly incontinent. His parents, Ben and Emma, decide to fake a separation because the local authorities cite the fact that Jonah "is extremely well supported by a loving family" to deny the funding they require to send Jonah to a specialist residential school that will take care of all his growing needs.
Written from the perspective of Ben Jewell (who suddenly finds himself in the position of a single parent) and drawing on his own experiences as a father of a child with severe autism, Jem Lester provides a detailed picture of what such a life entails. From changing Jonah's laden (usually leaking) diaper every morning to trying to calm him down when he has a meltdown to panicking when Jonah goes missing at a mall. But then there are also the good moments, when Jonah willingly takes Ben's hand, when he graces him with a smile, when he compliantly does what he is told to do.
Ben is nowhere near perfect. He has a drinking problem, he has a difficult relationship with his father (who he and Jonah are now living with) and he is irresponsible with the business his father had spent years building up before passing it on to him. But he will do whatever it takes to give his son the best care he needs. This care, and the means to prove that nothing less than this will do for Jonah, are staggeringly expensive. Through this story, Lester seems to be expressing his own frustrations at how the authorities are willing to shut their eyes to the extent of care and management such a child needs as long as they can foist the cheapest option on him, no matter how unsuitable.
The emotions of the characters are so real that they will reach out and grip you till you can do nothing but empathise. The frustrations that can force a couple apart. The hope and longing of parents waiting for their two year old to utter a single word. Their complete joy when he finally does so, followed by their deep-seated worry when he stops speaking again altogether.
But this is not a sad and depressing story. It is the story of a parent trying to be the best advocate he can be for a child who cannot express his needs. It is the story of three generations of Jewells and the relationships between them. It is a story of love, acceptance, forgiveness and moving on. But mostly, it is the story of Jonah Jewell, a beautiful boy who doesn't speak but is the best listener.
-Jem Lester
Jonah Jewell is ten years old. He is also severely autistic, nonverbal and doubly incontinent. His parents, Ben and Emma, decide to fake a separation because the local authorities cite the fact that Jonah "is extremely well supported by a loving family" to deny the funding they require to send Jonah to a specialist residential school that will take care of all his growing needs.
Written from the perspective of Ben Jewell (who suddenly finds himself in the position of a single parent) and drawing on his own experiences as a father of a child with severe autism, Jem Lester provides a detailed picture of what such a life entails. From changing Jonah's laden (usually leaking) diaper every morning to trying to calm him down when he has a meltdown to panicking when Jonah goes missing at a mall. But then there are also the good moments, when Jonah willingly takes Ben's hand, when he graces him with a smile, when he compliantly does what he is told to do.
Ben is nowhere near perfect. He has a drinking problem, he has a difficult relationship with his father (who he and Jonah are now living with) and he is irresponsible with the business his father had spent years building up before passing it on to him. But he will do whatever it takes to give his son the best care he needs. This care, and the means to prove that nothing less than this will do for Jonah, are staggeringly expensive. Through this story, Lester seems to be expressing his own frustrations at how the authorities are willing to shut their eyes to the extent of care and management such a child needs as long as they can foist the cheapest option on him, no matter how unsuitable.
The emotions of the characters are so real that they will reach out and grip you till you can do nothing but empathise. The frustrations that can force a couple apart. The hope and longing of parents waiting for their two year old to utter a single word. Their complete joy when he finally does so, followed by their deep-seated worry when he stops speaking again altogether.
But this is not a sad and depressing story. It is the story of a parent trying to be the best advocate he can be for a child who cannot express his needs. It is the story of three generations of Jewells and the relationships between them. It is a story of love, acceptance, forgiveness and moving on. But mostly, it is the story of Jonah Jewell, a beautiful boy who doesn't speak but is the best listener.