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4.02 AVERAGE
4.02 AVERAGE
A harrowing, heartbreaking but yet still in parts a humorous read. An eye opening insight into severe autism and what that really means for a family. I can't say it any better than the Observer did, "...a sadder and darker version of The Curious Incident of the Dog in the Nighttime"!
Wow. Heartbreaking is definitely the word for this book, but it still manages to be hopeful. Very powerful! Love that the author has an autistic son and wrote from experience. 4.5 stars.
Shtum is a deeply moving and emotional read. In fact, I felt so emotionally affected by this book that I still find it hard to view this as a fictional piece. Maybe this is because it so cleverly and accurately displays the secret lives of so many families in the same situation.
Shtum explores just how far two parents can be willing to go to protect their children's best interests, no matter what this could mean for them. This beautiful book is full of sadness, despair, sacrifice, love and an overwhelming sense of anger. An anger that people outside the family cannot understand what is best for autistic ten year-old Jonah as he faces starting a live in secondary school. Ben and Emma (Jonah's troubled parents) are desperate for Jonah to move to a residential placement for school and we join their story in this novel as they embark on an appeal against the local council to pursue their dream for Jonah. Through their journey we learn the painstaking sacrifices they have made to protect their son. Marital problems, alcoholism, addiction and emotional distress are just a side dish to the unlimited love they hold for their son.
Embarking on life as a single father, Ben moves himself and Jonah into his own father (Georg)'s house where we learn that despite Ben's frustration at Jonah's non-communication, he himself lacks the ability to fully communicate with his own father. We follow a very special journey with these three men. Georg offers the right amount of humour for this novel with his sarcastic quips but I couldn't help fall in love with the affectionate side he shows to his precious grandson. Later in the novel we learn exactly why Georg adores his grandson so much and it left me in floods of tears. We also see Ben learning to communicate with his father, but has he left it too late?
The most poignant part of this novel for me is the fact that we follow this story through the eyes of the father. Something which is not often explored in literature, or even in the media. I thought it was incredibly touching and emotional to read how a father's perfect love for his son could be so self-destructive. Ben is willing to sacrifice everything for his son and I think this is something which is often left out of fiction.
As someone who works with autistic children, I thought this was a very painful, hard-hitting but accurate portrayal of just how difficult life is, not just for the autistic child, but for the families affected by it. Countless people are fighting the battles we see in Shtum on a daily basis and that is why this novel is so incredibly important.
Shtum will have you laughing and crying right up until the final pages. A poignant, emotional and touching read which will stay with me for a very long time.
Thanks to Netgalley, the publisher and author for my arc in exchange for an honest review.
Shtum explores just how far two parents can be willing to go to protect their children's best interests, no matter what this could mean for them. This beautiful book is full of sadness, despair, sacrifice, love and an overwhelming sense of anger. An anger that people outside the family cannot understand what is best for autistic ten year-old Jonah as he faces starting a live in secondary school. Ben and Emma (Jonah's troubled parents) are desperate for Jonah to move to a residential placement for school and we join their story in this novel as they embark on an appeal against the local council to pursue their dream for Jonah. Through their journey we learn the painstaking sacrifices they have made to protect their son. Marital problems, alcoholism, addiction and emotional distress are just a side dish to the unlimited love they hold for their son.
Embarking on life as a single father, Ben moves himself and Jonah into his own father (Georg)'s house where we learn that despite Ben's frustration at Jonah's non-communication, he himself lacks the ability to fully communicate with his own father. We follow a very special journey with these three men. Georg offers the right amount of humour for this novel with his sarcastic quips but I couldn't help fall in love with the affectionate side he shows to his precious grandson. Later in the novel we learn exactly why Georg adores his grandson so much and it left me in floods of tears. We also see Ben learning to communicate with his father, but has he left it too late?
The most poignant part of this novel for me is the fact that we follow this story through the eyes of the father. Something which is not often explored in literature, or even in the media. I thought it was incredibly touching and emotional to read how a father's perfect love for his son could be so self-destructive. Ben is willing to sacrifice everything for his son and I think this is something which is often left out of fiction.
As someone who works with autistic children, I thought this was a very painful, hard-hitting but accurate portrayal of just how difficult life is, not just for the autistic child, but for the families affected by it. Countless people are fighting the battles we see in Shtum on a daily basis and that is why this novel is so incredibly important.
Shtum will have you laughing and crying right up until the final pages. A poignant, emotional and touching read which will stay with me for a very long time.
Thanks to Netgalley, the publisher and author for my arc in exchange for an honest review.
reflective
medium-paced
Strong character development:
Yes
Loveable characters:
No
Diverse cast of characters:
N/A
Flaws of characters a main focus:
Yes
Holy shit. A great novel about a father trying to figure out what is best for his autistic son. And for himself. Emotional impact of the last 20 pages will reverberate for some time.
Received in exchange for a review through Goodreads giveaways programme. Review to follow soon.
There have been a few dystopia novels in my reading recently (The City of Mirrors and The Last of Us) and it occurs to me that this is a far more domestic version of the phenomenon. It's just that it's real and actually happens so somehow people take less notice. Ben and Emma are a pair of middle-class parents who have a beautiful and healthy ten year-old son Jonah. Life should be rosy but it is not. Jonah is severely autistic, non-verbal and doubly incontinent, with a tendency to do artwork with the contents of his nappy if he is not supervised properly. With an upcoming transition to the next stage of education, Ben and Emma are battling to make sure that their child gets the care that will best meet his needs. When a local authority report notes that Jonah has a 'loving family' who support him at home, barrister Emma decides that it might be best for Jonah's chances if they fake a separation to try and force the council to go their way. So, Ben and Jonah move out of the family home and in with Ben's father Georg, an ageing Trotskyite and Holocaust survivor. It's like Man and Boy meets The A Word.
Ben is the novel's narrator, a kind of genial mid-thirties man-child whose drinking rumbles in the background - his father Georg has little patience for him but an intense affection for Jonah. Ben bridles as he overhears Georg confiding family stories to his grandson which Ben has been trying for years to discover. Having abandoned a career in marketing, Ben has been pottering about in his father's catering supplies business and is widely regarded by friends and close family as never having grown up. His focus is Jonah but he cannot bear to read the reports on his son. However, as time goes on and with Emma increasingly remote, Ben is forced to shoulder the legal battle to appeal the council's decision and get Jonah into the residential school based around a waking-day curriculum which seems best equipped to help him make progress.
The unsettling thing about Shtum is that it is only just qualifying as fiction. Jem Lester is himself father to a child with severe autism and as he narrates his story through the voice of Ben, one almost wonders if he is finding a form of release or therapy through this. He and his former partner really did have to take their local council to court to get their son Noah into the £200,000 a year residential programme rather than the £84k version that the council were willing to provide. And like Ben, this all happened during a time when Lester's father was going through cancer. The only slight difference is that Lester's relationship with Noah's mother had ended some time before all of this, but otherwise this is a very lightly fictionalised personal experience.
The problem with autism though in terms of narrative is that it is invisible, incurable and not technically life-limiting, meaning that parents of children as far along the spectrum as Jonah face a life-long battle to keep their children in an appropriate care setting. The novel ends with Jonah aged eleven, but I read an interview where Lester notes that his own son is now sixteen and he already has to keep an eye on the horizon for what will become of him at nineteen. Lester is the beleaguered veteran but he is not a survivor - his battle is not yet done. His observations and commentary of other people's reactions have a particular note of truth - from the resentment around the disbelief that he loves his child as much any other parent to the bitterness at other people's social media support for the legal campaign when they have been so distant in real life to the simple grief over the idea that sending your child away from home at the age of eleven never to return is truly the best option. The moment that made me laugh out loud though was when Ben mentioned his autistic son and a woman asked what Jonah's 'special power' was - Ben can only cite Jonah's defecating abilities and nothing else. Our general ignorance over autism is outstanding.
There are so many parts of this novel that made me wince. The way in which Emma and Ben collapse after a day of surviving with Jonah, getting out the camera to document Ben's injury after Jonah's latest biting attack. Then Tom, the son of Ben's long-standing friend, three days younger than Jonah and trying desperately to muster a friendship with him that will match that of their fathers. Tom is such a lovely boy, tearful when he is unable to protect Jonah, insisting that he is his 'best friend' and rabbiting away about his hobbies even though Jonah says not a word. The most painful moment was the recollection of those few words Jonah spoke as a baby, in particular his parents' excitement when two year-old Jonah said 'bubble' while having a bath - they thought it was a sign that he was improving but in fact it turned out to be the last word he ever spoke. That had the note both of tragedy but also of real life.
Part of my job involves surveying patient experiences of healthcare and depresses me how often it comes down to the brass tacks and costings. Ben's best friend is astounded to discover that the council-approved school for Jonah will cost £84000 per year, that this is the cost to the tax payer of raising Jonah - but Ben tells him resolutely that this is not enough, he needs them to spend more than double that. For people outside of the condition, this can seem too much but for the parents, they naturally want the very best for their child, their beautiful, vulnerable child who cannot speak for themselves and who will never grow up, always remain like Peter Pan, trapped in their own Never Neverland. It frightens me though because when it comes down to money, there seems to be a feeling in the background that somehow these people, these children who gain adult bodies but who remain children inside, it is as if they matter less because they struggle to speak for themselves.
In my local area there is the horrific case of Connor Sparrowhawk - the burden of care is too heavy for families but yet Shtum illustrates how far it can become a game of chicken between the family and the local authority to get the appropriate care. Jem Lester and his partner spent over £40,000 on their legal battle for their son Noah - there were other children in Noah's previous school who were in similar areas of the spectrum but whose families did not have the means. Shtum reminds us of how these children are being failed. It is a particularly damning indictment on the current care system that Lester makes reference to the fate of Jonah's autistic great uncle - which, as a young man with learning difficulties in a Nazi-occupied country, was unsurprisingly unpleasant.
Jonah himself is a fascinating character - the social worker comes to observe him and Ben snorts with laughter when Jonah runs around the garden, stripping off his clothes and then urinates her for a finale. But he is a child recognisably, he loves the outdoors and is fascinated by feathers. He lives only in the present, his emotions are fleeting, his perceptions unclear. Can he truly love his parents? Does he know what is going on around him? What does life even look like to Jonah? The incident when Ben is driving and Jonah tries to strangle his grandfather is terrifying but diffused as a matter of course by Ben throwing a feather at Jonah to distract him. His grandfather's crystal paperweight also holds great attraction, something which made me feel genuinely teary by the end.
There is a great deal of bleak humour in the background to this book; on some levels this is an inter-generational comedy of misunderstanding (Jonah is unable to speak and Georg and Ben are refusing). Georg feels able to tell Jonah the painful stories from his past which he has never felt able to pass on to Ben (telling the latter 'all of them gassed by the Nazis'). Across the novel are scattered the various picture cards that Jonah nominally uses to communicate. There are also the council letters in their Orwellian Newspeak documenting the progress of the case. With a title like Shtum, it is not surprising that failure to communicate should become a theme at the forefront of the action. Georg's last message to his son is not one of love, but practical advice about the upcoming tax return deadline, Ben is as uncertain in his role as son as he is as father to an autistic boy. Yet, perhaps Lester's greatest success with this novel is in making us see that Jonah can gallop about in his life, pay no heed, never learn to say 'Mummy' or 'Daddy' but that in his own way, he does still love his parents.
Behind all of this though, I could sense Lester's anger - he is the soldier in the trenches while most people are unaware of the war. The autistic children who people see are those who are able to train themselves to accept society's norms, they are those who are near enough 'normal' that they can actually recognise what those norms are. This is not the case for all - around 25% of autistic children will never speak. They will not get jobs, they will not move out, they will not marry and they will not have children of their own. They will grow up physically and they may be a danger to themselves. It is a mark of Lester's skill as a writer that his novel is not depressing but Shtum feels like the opening of the floodgate of emotion, unleashing humour but also grief, disappointment and loss over the devastating consequences of a condition about which it is important we don't keep mum.
Ben is the novel's narrator, a kind of genial mid-thirties man-child whose drinking rumbles in the background - his father Georg has little patience for him but an intense affection for Jonah. Ben bridles as he overhears Georg confiding family stories to his grandson which Ben has been trying for years to discover. Having abandoned a career in marketing, Ben has been pottering about in his father's catering supplies business and is widely regarded by friends and close family as never having grown up. His focus is Jonah but he cannot bear to read the reports on his son. However, as time goes on and with Emma increasingly remote, Ben is forced to shoulder the legal battle to appeal the council's decision and get Jonah into the residential school based around a waking-day curriculum which seems best equipped to help him make progress.
The unsettling thing about Shtum is that it is only just qualifying as fiction. Jem Lester is himself father to a child with severe autism and as he narrates his story through the voice of Ben, one almost wonders if he is finding a form of release or therapy through this. He and his former partner really did have to take their local council to court to get their son Noah into the £200,000 a year residential programme rather than the £84k version that the council were willing to provide. And like Ben, this all happened during a time when Lester's father was going through cancer. The only slight difference is that Lester's relationship with Noah's mother had ended some time before all of this, but otherwise this is a very lightly fictionalised personal experience.
The problem with autism though in terms of narrative is that it is invisible, incurable and not technically life-limiting, meaning that parents of children as far along the spectrum as Jonah face a life-long battle to keep their children in an appropriate care setting. The novel ends with Jonah aged eleven, but I read an interview where Lester notes that his own son is now sixteen and he already has to keep an eye on the horizon for what will become of him at nineteen. Lester is the beleaguered veteran but he is not a survivor - his battle is not yet done. His observations and commentary of other people's reactions have a particular note of truth - from the resentment around the disbelief that he loves his child as much any other parent to the bitterness at other people's social media support for the legal campaign when they have been so distant in real life to the simple grief over the idea that sending your child away from home at the age of eleven never to return is truly the best option. The moment that made me laugh out loud though was when Ben mentioned his autistic son and a woman asked what Jonah's 'special power' was - Ben can only cite Jonah's defecating abilities and nothing else. Our general ignorance over autism is outstanding.
There are so many parts of this novel that made me wince. The way in which Emma and Ben collapse after a day of surviving with Jonah, getting out the camera to document Ben's injury after Jonah's latest biting attack. Then Tom, the son of Ben's long-standing friend, three days younger than Jonah and trying desperately to muster a friendship with him that will match that of their fathers. Tom is such a lovely boy, tearful when he is unable to protect Jonah, insisting that he is his 'best friend' and rabbiting away about his hobbies even though Jonah says not a word. The most painful moment was the recollection of those few words Jonah spoke as a baby, in particular his parents' excitement when two year-old Jonah said 'bubble' while having a bath - they thought it was a sign that he was improving but in fact it turned out to be the last word he ever spoke. That had the note both of tragedy but also of real life.
Part of my job involves surveying patient experiences of healthcare and depresses me how often it comes down to the brass tacks and costings. Ben's best friend is astounded to discover that the council-approved school for Jonah will cost £84000 per year, that this is the cost to the tax payer of raising Jonah - but Ben tells him resolutely that this is not enough, he needs them to spend more than double that. For people outside of the condition, this can seem too much but for the parents, they naturally want the very best for their child, their beautiful, vulnerable child who cannot speak for themselves and who will never grow up, always remain like Peter Pan, trapped in their own Never Neverland. It frightens me though because when it comes down to money, there seems to be a feeling in the background that somehow these people, these children who gain adult bodies but who remain children inside, it is as if they matter less because they struggle to speak for themselves.
In my local area there is the horrific case of Connor Sparrowhawk - the burden of care is too heavy for families but yet Shtum illustrates how far it can become a game of chicken between the family and the local authority to get the appropriate care. Jem Lester and his partner spent over £40,000 on their legal battle for their son Noah - there were other children in Noah's previous school who were in similar areas of the spectrum but whose families did not have the means. Shtum reminds us of how these children are being failed. It is a particularly damning indictment on the current care system that Lester makes reference to the fate of Jonah's autistic great uncle - which, as a young man with learning difficulties in a Nazi-occupied country, was unsurprisingly unpleasant.
Jonah himself is a fascinating character - the social worker comes to observe him and Ben snorts with laughter when Jonah runs around the garden, stripping off his clothes and then urinates her for a finale. But he is a child recognisably, he loves the outdoors and is fascinated by feathers. He lives only in the present, his emotions are fleeting, his perceptions unclear. Can he truly love his parents? Does he know what is going on around him? What does life even look like to Jonah? The incident when Ben is driving and Jonah tries to strangle his grandfather is terrifying but diffused as a matter of course by Ben throwing a feather at Jonah to distract him. His grandfather's crystal paperweight also holds great attraction, something which made me feel genuinely teary by the end.
There is a great deal of bleak humour in the background to this book; on some levels this is an inter-generational comedy of misunderstanding (Jonah is unable to speak and Georg and Ben are refusing). Georg feels able to tell Jonah the painful stories from his past which he has never felt able to pass on to Ben (telling the latter 'all of them gassed by the Nazis'). Across the novel are scattered the various picture cards that Jonah nominally uses to communicate. There are also the council letters in their Orwellian Newspeak documenting the progress of the case. With a title like Shtum, it is not surprising that failure to communicate should become a theme at the forefront of the action. Georg's last message to his son is not one of love, but practical advice about the upcoming tax return deadline, Ben is as uncertain in his role as son as he is as father to an autistic boy. Yet, perhaps Lester's greatest success with this novel is in making us see that Jonah can gallop about in his life, pay no heed, never learn to say 'Mummy' or 'Daddy' but that in his own way, he does still love his parents.
Behind all of this though, I could sense Lester's anger - he is the soldier in the trenches while most people are unaware of the war. The autistic children who people see are those who are able to train themselves to accept society's norms, they are those who are near enough 'normal' that they can actually recognise what those norms are. This is not the case for all - around 25% of autistic children will never speak. They will not get jobs, they will not move out, they will not marry and they will not have children of their own. They will grow up physically and they may be a danger to themselves. It is a mark of Lester's skill as a writer that his novel is not depressing but Shtum feels like the opening of the floodgate of emotion, unleashing humour but also grief, disappointment and loss over the devastating consequences of a condition about which it is important we don't keep mum.
Shtum is both comic and depressing - there is a lot of dark humour, but also a lot of sadness. The story centres around a dysfunctional man and his relationships with his father, his autistic son, and his wife. The writer does a great job depicting the challenges of parenting a child with autism, and the impact on other relationships. For me though, the main character was a bit too unlikeable, and had too many other issues, so I didn't always sympathise with him.
I found the story engrossing in places, but at other times really lost interest - so a bit patchy overall.
I found the story engrossing in places, but at other times really lost interest - so a bit patchy overall.
funny
hopeful
informative
lighthearted
reflective
medium-paced
Strong character development:
Yes
Loveable characters:
Yes
Diverse cast of characters:
Complicated
Flaws of characters a main focus:
Yes
*This book was given to me by the publisher through NetGalley in exchange for an honest review – all opinions are my own.*
This is a book following a broken family with an autistic child as the parents are trying to get him the care he so desperately needs.
I have mixed feelings about this book because I didn't request it. I was given it by the publisher and it truly isn't my kind of book. However, I thought it was beautiful and raw, shocking and sad, frustrating and challenging. It was a great read. If you like books about difficult family situation, about love for your family or love for yourself, about finding the right words, then you will love this beautifully written book about the difficult of having an autistic child in a world that still doesn't fully understand them.
This is a book following a broken family with an autistic child as the parents are trying to get him the care he so desperately needs.
I have mixed feelings about this book because I didn't request it. I was given it by the publisher and it truly isn't my kind of book. However, I thought it was beautiful and raw, shocking and sad, frustrating and challenging. It was a great read. If you like books about difficult family situation, about love for your family or love for yourself, about finding the right words, then you will love this beautifully written book about the difficult of having an autistic child in a world that still doesn't fully understand them.