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My Own Blood: A Memoir of Madness and Special Needs Parenting
Mothering under normal circumstances takes all you have to give. But what happens when your child is disabled, and sacrificing all you've got and more is the only hope for a decent future? Full of rage and resilience, duty and love, Ashley Bristowe delivers a mother's voice like no other we've heard.
When their second child, Alexander, is diagnosed with a rare genetic disorder, doctors tell Ashley Bristowe and her husband that the boy won't walk, or even talk--that he is profoundly disabled. Stunned and reeling, Ashley researches a disorder so new it's just been named--Kleefstra Syndrome--and she finds little hope and a maze of obstacles. Then she comes across the US-based "Institutes," which have been working to improve the lives of brain-injured children for decades. Recruiting volunteers, organizing therapy, juggling a million tests and appointments, even fundraising as the family falls deep into debt, Ashley devotes years of 24/7 effort to running an impossibly rigorous diet and therapy programme for their son with the hope of saving his life, and her own. The ending is happy: he will never be a "normal" boy, but Alexander talks, he walks, he swims, he plays the piano (badly) and he goes to school.
This victory isn't clean and it's far from pretty; the personal toll on Ashley is devastating. "It takes a village," people say, but too much of their village is uncomfortable with her son's difference, the therapy regimen's demands and the family's bottomless need. The health and provincial services bureaucracy set them a maddening set of hoops to jump through, showing how disabled children and their families languish because of criminally low expectations about what can be done to help.
My Own Blood is an uplifting story, but it never shies away from the devastating impact of a baby that science couldn't predict and medicine couldn't help. It's the story of a woman who lost everything she'd once been--a professional, an optimist, a joker, a capable adult--in sacrifice to her son. An honest account of a woman's life turned upside down.
When their second child, Alexander, is diagnosed with a rare genetic disorder, doctors tell Ashley Bristowe and her husband that the boy won't walk, or even talk--that he is profoundly disabled. Stunned and reeling, Ashley researches a disorder so new it's just been named--Kleefstra Syndrome--and she finds little hope and a maze of obstacles. Then she comes across the US-based "Institutes," which have been working to improve the lives of brain-injured children for decades. Recruiting volunteers, organizing therapy, juggling a million tests and appointments, even fundraising as the family falls deep into debt, Ashley devotes years of 24/7 effort to running an impossibly rigorous diet and therapy programme for their son with the hope of saving his life, and her own. The ending is happy: he will never be a "normal" boy, but Alexander talks, he walks, he swims, he plays the piano (badly) and he goes to school.
This victory isn't clean and it's far from pretty; the personal toll on Ashley is devastating. "It takes a village," people say, but too much of their village is uncomfortable with her son's difference, the therapy regimen's demands and the family's bottomless need. The health and provincial services bureaucracy set them a maddening set of hoops to jump through, showing how disabled children and their families languish because of criminally low expectations about what can be done to help.
My Own Blood is an uplifting story, but it never shies away from the devastating impact of a baby that science couldn't predict and medicine couldn't help. It's the story of a woman who lost everything she'd once been--a professional, an optimist, a joker, a capable adult--in sacrifice to her son. An honest account of a woman's life turned upside down.
304 pages, Hardcover
Published April 7, 2020
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May 26, 2021
The memoirist and essayist Michael Steinberg said “Often [a memoir] takes the form of an internal wrestling match, a struggle to come to terms with some nagging itch, perplexing question, persistent feeling, sense of confusion or disorientation, or a lingering personal problem.”
There are multiple “wrestling matches” in this memoir. First is a triumph over a child’s severe disability. Second is the fight for the child in an uncaring and indifferent government support system and society that hides from and is bigoted against people with disabilities. Third is the seeming abandonment by an uncaring and indifferent, dysfunctional family. And lastly, the author wrestles with her personal demons while confronting all this. The author and her family win the first match and fight the system to a draw in the second. The third and fourth bring the “perplexing questions, confusion, disorientation and lingering personal problems.”
The story of triumph starts with the child, Alexander, the author’s son, being born with a profound disability, perhaps never being able to talk or walk, and expecting to be permanently cognitively impaired. Ultimately, he talks, reads, and walks and has many other abilities and successfully attends school and interacts successfully with others. The path to triumph involves a battle with the medical establishment and health care system that provide disinterested care, although their jobs would seem to include being paid to care. More ominous perhaps is the uncaring nature and painful indifference of the author’s family.
The author Ashley Bristowe is a photographer, book promoter and former child television star. Her husband, Chris Turner is a published writer. Both are ambitious Gen-Xers making their livings as freelancers in the fast lane in a trendy Calgary neighborhood. Before the birth of their son, along with their four-year-old daughter they have a seemingly blissful life, including much domestic and global travel, winter vacations, and a long list of friends and business contacts. That all falls apart when their son Alexander is diagnosed with an extremely rare genetic syndrome. The author gives up her professional life to bear the burden of wrangling the bureaucracy around his medical care and government support. To provide this support, the family sacrifices half of their income and most of their personal life.
Much of the book is based on a blog by the author chronicling Alexander’s life from 22 months until he began to walk at the age of four. (He is now 12.) The author began the blog as a vehicle to raise volunteers to help, and to raise funds for his support. The blog also details his therapy and the struggles to provide it.
The author discovers the Institutes for the Advancement of Human Potential in Philadelphia, and Alexander’s care begins to follow their unconventional and controversial program. This requires a cultish adherence to a seven-day-a week, six hour-a-day parent-administered home physical therapy and learning program, along with a strict diet. Added to this is a more conventional program of therapy partially funded by the Alberta government. Bringing the care from an idea to fulfillment is a bureaucratic and personal nightmare for the author and her husband. They seek help from family and are met with the same indifference they face everywhere. They write an open letter to friends asking for volunteer help but come up empty. In the face of this and other disappointments, the author provides unabashed and honest account of her struggle, which includes her extreme anxiety and depression.
Up front, the author states that this is an angry book, and the foreword warns of a lot of swearing. The author might also have warned to be wary of buses since she proceeds to throw her friends, family, the medical profession, the government and just about anyone else in sight under the bus throughout the memoir. Readers face a dilemma with this, as the foreword also notes that the memoir is “mostly true” leaving questions as to whether all the betrayals of the author really happened. The author sounds like a wonderful mother and she credits her own mother for being a caring mother to her. But her mother comes of the worst in the book and mother and daughter become estranged; by the author’s account this is all on the mother. But it is not until the end of the book in the Postscript that the author reveals that her mother had just experienced the deaths of both of her parents in a short time span, after ten difficult years caring for them. This feels like a shady betrayal by the author, not only of the author’s mother, but as well the reader –who should not have to wonder at the mother’s lack humanity for 400 pages to have it explained in the last few pages of the book. The episode with the mother yelling a warning to the pregnant author/daughter in real life “You’ll be sorry. This is a mistake.” is eerily like the fiction of Bret Lott’s Jewel, where the pregnant main character is warned with a prophecy: "I say unto you that the baby you be carrying be yo' hardship, be yo' test in this world. This be my prophesying unto you." In Jewel, the baby is born with Down syndrome.
In the first half of the book, I felt compassion for the author’s family as she describes the difficulties of raising Alexander and the lack of help particularly from friends, who the author canvassed for any form of assistance, receiving only a minimal amount. I felt as if I wanted to reach out to help them. Slowly through the second half, I walked this willingness back as the author trashed virtually everyone around her. Finally with the revelation about the mother in the Postscript noted above, I too felt indifferent and even a little hostile to the author. To twist the story further, as final zingers, the author then reveals that she had heart failure and then lost a kidney while writing the book (Alexander was ten at the time). This all takes readers on a strange roller coaster ride of despair, empathy, indifference, and pity. This is perhaps indicative of the author’s interactions with her friends and begs the question of whether there is more to the rejection story and the author’s own role in it than is revealed. Although there is a fair amount of self-examination and self-awareness here, it does not seem complete.
Anger and questions about betrayals notwithstanding, the author is clever and evocative and has a skillful way with phrases evoking emotion and irony and humour. This brings a powerful overriding message of the heartbreak and difficulty of seeking compassion and straight up help—monetary and personal—for people with disabilities. Anyone who has dealt with the social services system for people with disabilities or mental illness knows the frustrations and heartbreak of ultimately feeling that they are the last to be helped and that society does not care--people with disabilities are devalued and unwanted in society. Decades ago, care was entrusted to the horrors of institutions; now we simply leave them behind to cope on their own and within their families. As the author advocates, early intervention would be cheaper in the long run. But it is not expedient in the eyes of government, and the public at large is as indifferent as friends, family and many of the in-system therapists described here. Perhaps this kind of memoir will raise awareness and start a dialogue toward more compassionate thought, process, and outcomes.
There are multiple “wrestling matches” in this memoir. First is a triumph over a child’s severe disability. Second is the fight for the child in an uncaring and indifferent government support system and society that hides from and is bigoted against people with disabilities. Third is the seeming abandonment by an uncaring and indifferent, dysfunctional family. And lastly, the author wrestles with her personal demons while confronting all this. The author and her family win the first match and fight the system to a draw in the second. The third and fourth bring the “perplexing questions, confusion, disorientation and lingering personal problems.”
The story of triumph starts with the child, Alexander, the author’s son, being born with a profound disability, perhaps never being able to talk or walk, and expecting to be permanently cognitively impaired. Ultimately, he talks, reads, and walks and has many other abilities and successfully attends school and interacts successfully with others. The path to triumph involves a battle with the medical establishment and health care system that provide disinterested care, although their jobs would seem to include being paid to care. More ominous perhaps is the uncaring nature and painful indifference of the author’s family.
The author Ashley Bristowe is a photographer, book promoter and former child television star. Her husband, Chris Turner is a published writer. Both are ambitious Gen-Xers making their livings as freelancers in the fast lane in a trendy Calgary neighborhood. Before the birth of their son, along with their four-year-old daughter they have a seemingly blissful life, including much domestic and global travel, winter vacations, and a long list of friends and business contacts. That all falls apart when their son Alexander is diagnosed with an extremely rare genetic syndrome. The author gives up her professional life to bear the burden of wrangling the bureaucracy around his medical care and government support. To provide this support, the family sacrifices half of their income and most of their personal life.
Much of the book is based on a blog by the author chronicling Alexander’s life from 22 months until he began to walk at the age of four. (He is now 12.) The author began the blog as a vehicle to raise volunteers to help, and to raise funds for his support. The blog also details his therapy and the struggles to provide it.
The author discovers the Institutes for the Advancement of Human Potential in Philadelphia, and Alexander’s care begins to follow their unconventional and controversial program. This requires a cultish adherence to a seven-day-a week, six hour-a-day parent-administered home physical therapy and learning program, along with a strict diet. Added to this is a more conventional program of therapy partially funded by the Alberta government. Bringing the care from an idea to fulfillment is a bureaucratic and personal nightmare for the author and her husband. They seek help from family and are met with the same indifference they face everywhere. They write an open letter to friends asking for volunteer help but come up empty. In the face of this and other disappointments, the author provides unabashed and honest account of her struggle, which includes her extreme anxiety and depression.
Up front, the author states that this is an angry book, and the foreword warns of a lot of swearing. The author might also have warned to be wary of buses since she proceeds to throw her friends, family, the medical profession, the government and just about anyone else in sight under the bus throughout the memoir. Readers face a dilemma with this, as the foreword also notes that the memoir is “mostly true” leaving questions as to whether all the betrayals of the author really happened. The author sounds like a wonderful mother and she credits her own mother for being a caring mother to her. But her mother comes of the worst in the book and mother and daughter become estranged; by the author’s account this is all on the mother. But it is not until the end of the book in the Postscript that the author reveals that her mother had just experienced the deaths of both of her parents in a short time span, after ten difficult years caring for them. This feels like a shady betrayal by the author, not only of the author’s mother, but as well the reader –who should not have to wonder at the mother’s lack humanity for 400 pages to have it explained in the last few pages of the book. The episode with the mother yelling a warning to the pregnant author/daughter in real life “You’ll be sorry. This is a mistake.” is eerily like the fiction of Bret Lott’s Jewel, where the pregnant main character is warned with a prophecy: "I say unto you that the baby you be carrying be yo' hardship, be yo' test in this world. This be my prophesying unto you." In Jewel, the baby is born with Down syndrome.
In the first half of the book, I felt compassion for the author’s family as she describes the difficulties of raising Alexander and the lack of help particularly from friends, who the author canvassed for any form of assistance, receiving only a minimal amount. I felt as if I wanted to reach out to help them. Slowly through the second half, I walked this willingness back as the author trashed virtually everyone around her. Finally with the revelation about the mother in the Postscript noted above, I too felt indifferent and even a little hostile to the author. To twist the story further, as final zingers, the author then reveals that she had heart failure and then lost a kidney while writing the book (Alexander was ten at the time). This all takes readers on a strange roller coaster ride of despair, empathy, indifference, and pity. This is perhaps indicative of the author’s interactions with her friends and begs the question of whether there is more to the rejection story and the author’s own role in it than is revealed. Although there is a fair amount of self-examination and self-awareness here, it does not seem complete.
Anger and questions about betrayals notwithstanding, the author is clever and evocative and has a skillful way with phrases evoking emotion and irony and humour. This brings a powerful overriding message of the heartbreak and difficulty of seeking compassion and straight up help—monetary and personal—for people with disabilities. Anyone who has dealt with the social services system for people with disabilities or mental illness knows the frustrations and heartbreak of ultimately feeling that they are the last to be helped and that society does not care--people with disabilities are devalued and unwanted in society. Decades ago, care was entrusted to the horrors of institutions; now we simply leave them behind to cope on their own and within their families. As the author advocates, early intervention would be cheaper in the long run. But it is not expedient in the eyes of government, and the public at large is as indifferent as friends, family and many of the in-system therapists described here. Perhaps this kind of memoir will raise awareness and start a dialogue toward more compassionate thought, process, and outcomes.
April 13, 2021
Riveting and gripping. This isn’t your typical ‘rainbows, cupcakes, and unicorns what I learned about love from my disabled child’ memoir.
Ashley Bristowe book My Own Blood: A Memoir of Madness and Special Needs Parenting is a raw and visceral account of the cataclysmic rupture a disabled child has to a family, and the impact it makes on every aspect of your life: financial, emotional, psychological, and physical. Her story takes us inside her existential reckoning as she comes to terms with the reality of having a disabled son in a society that doesn’t want to know, and loving her boy on his terms.
Against the advice of well meaning family, friends, and conventional medical doctors who tell her to accept that her son will never talk or walk, she starts an unconventional intensive therapy program that takes her to the brink of her sanity.
As her acceptance of the diagnosis incrementally deepens and her son incrementally improves, she understands that in saving her son she is saving her family and ultimately herself.
Bristowe gives voice to every parent’s deepest fear and the self-destructive feelings that accompany their darkest hour. When I say it’s raw, I mean raw like your skin after you’ve popped a wheelie on your banana bike and wiped out on gravel.
Ashley Bristowe book My Own Blood: A Memoir of Madness and Special Needs Parenting is a raw and visceral account of the cataclysmic rupture a disabled child has to a family, and the impact it makes on every aspect of your life: financial, emotional, psychological, and physical. Her story takes us inside her existential reckoning as she comes to terms with the reality of having a disabled son in a society that doesn’t want to know, and loving her boy on his terms.
Against the advice of well meaning family, friends, and conventional medical doctors who tell her to accept that her son will never talk or walk, she starts an unconventional intensive therapy program that takes her to the brink of her sanity.
As her acceptance of the diagnosis incrementally deepens and her son incrementally improves, she understands that in saving her son she is saving her family and ultimately herself.
Bristowe gives voice to every parent’s deepest fear and the self-destructive feelings that accompany their darkest hour. When I say it’s raw, I mean raw like your skin after you’ve popped a wheelie on your banana bike and wiped out on gravel.
August 24, 2021
I have read this book twice before leaving a review. I loved this book. I took special education and i love books that speak of parents difficulties. This book wasn’t sugar coated and was raw and I could not recommend this book enough
April 7, 2021
This book is a soul rending combination of devastating and uplifting. It does for motherhood with Glennon Doyle’s Untamed did for womanhood. It is honest, brave, full of my favourite swearwords, and a voice that will resonate with women and parents everywhere. It truly made me laugh, it truly made me cry, it made me cheer, swear along with her, and gasp at times in both delight and horror. I could not put it down, except when I needed to catch my breath. Highly recommend it.
June 23, 2023
This is the story of Ashley Bristowe, her daughter Sloane, husband Chris Turner (called Turner) and son, Alexander(often called Al). The story mainly centers on Ashley's journey after Alexander is born and they learn he has a rare genetic condition called Kleefstra syndrome.
Ashley and Turner are highly educated professionals living in Calgary, AB. Chris is a Canadian-famous writer and Ashley a prominent photographer. They travel all over the world and seem to have an idealized existence until Alexander is born.
While Ashley very effectively and bravely puts herself out there in her most vulnerable and exposes the dark side of having a child with a disability that many don't talk about, I had some major problems with this book.
Before it starts to sound like I am talking out of my behind and just have no idea, I have a child with a disabilities myself-autism and adhd. I was also a social worker that worked with people with complex medical, developmental, and intellectual disabilities, and their families.While my daughter's struggles are very different from Al's, the struggles are still there. I related to Ashley when she was trying to navigate the bureaucracy of the health care system to get help for her son , and the maddening reality that the help just isn't there. That's all very true. I can't pretend at all to say I know just what Ashley went through, but in the informal camaraderie that's often there among parents of disabled children, I do "get it" to a degree in the general sense.
The book started to go downhill for me when Ashley and Turner take Al to the Institutes for Achievement of Human Potential (I'll just call it IAHP) in Philadelphia, in hopes that their radical treatment will help Al.
Always curious to know other therapies and methods, before I read much more, I did research on the IAHP. I'd vaguely heard of it, but didn't know the details.
The IAHP has been called out as quackery by doctors , researchers, scientists etc since its' inception. It even appears on the well-respected website, "quackwatch". The program costs thousands upon thousands of dollars and relies upon "treatments" that are unscientific and sometimes downright dangerous.
I can totally understand why any parent would go there and want desperately to implement the program. Who among us wouldn't try all we could to help our child? I could see how Ashley was blinded to the red flags at first, but was baffled at how she and Turner, very well educated people, continued to fall for this radical therapy.
Huge red flags that show up right away: the parents are "Conditioned" through a series of bell prompts, stern warnings, and rooms kept cold for "optimal learning" (while it's been proven heat does slow down the thinking process, the ideal temp for learning is about 68-74 or so when I looked it up, not the cold temps IAHP insisted on). I started to think of Pavlov's dogs. The speakers are enthusiastic and adamant that they can basically "cure" or "fix" an "injured" child (more on that later) through their specific treatments.
Ashley recounts with wonder a boy with severe cerebral palsy who is able to "speak" with facilitated communication (FC). My red flag went up at the very idea that this child was basically put on display to perform for the audience like a trained animal. Disgusting. The child "spoke" with an incredibly rich vocabulary with insights well beyond his years that left me skeptical. I read up more on "FC" and it has been completely , soundly rejected by the scientific and therapeutic community.It's been proven to be quackery time and time again, but sadly, desperate parents still flock to charlatans that sell this snake oil.
The program Ashley is asked to implement is beyond extreme. the IAHP frankly sounds like a cult. They have to completely revamp their diets: no sugar, no gluten, no wheat, no dairy. All food has to be strictly weighed and measured. It's insisted upon that Al eat green veggies at breakfast.Ashley does this not only for Al, but for the entire family. That struck me as extremely unfair. While it might be easier to change the diet for everyone, how fair was it to her 5 year old daughter who was suddenly not allowed ice cream or a popsicle?
Daily "patterning",a way that is supposed to ignite brain plasticity, has to be done several times a day with the help of tons of volunteers, who can be anyone, they don't have to be trained. (Patterning has been denounced as an outdated mode of therapy that is based on faulty assumptions about the brain). Al has to have "mask treatment" something like 40 times a day, a bizarre treatment that's supposed to send more oxygen to the brain (sounds like HBOT, a therapy that's been proven inconclusive at best for people with brain injuries). There's breathing pattern treatments. Flashcards. The treatments all have to be painstakingly detailed. They take up Ashley's entire day and part of the night, every day.
If they don't adhere strictly to the program and none other, they get booted. They have to hand in reams of detailed progression notes to the institute to be able to come back.
Ashley begins to, understandably, enter a downward spiral. She becomes ill and depressed. Due to a shortage of doctors, she can't get medical care. She feels isolated. She feels overwhelmed. The program takes over their entire lives and she is pushing it to the extreme. Ashley sounds like a perfectionist and, although I'm no psychiatrist, she sounds manic in several areas with the fervour she puts into any project, but then especially this program for Al. The whole house has to be cleaned of "toxins", any pillow beyond a year old gets thrown out. All-natural cleaning supplies. Fancy water purifiers. Air purifiers. House inspections. The whole thing , frankly, seems extreme and absolutely ridiculous. The IAHP warns you that others will think you;'re crazy and try to get you off track, but don't deviate for a second from the program. They know best. Sound like a cult yet? (In fact, the director, Janet Dorman, is a Scientologist. She claims that has no bearing on her work there. hmmm..)
Here's where I might sound mean, but there were many spots when Ashley just started to plain annoy me.
She berates friends and family for not helping out enough, for not wanting to do the "patterning". She's extremely harsh and critical of her own family, especially her sister and her parents (whom she bizarrely calls "Bruce" and "Val" and then "mom" and "dad" at intervals. It's weird and confusing.). She rages at the practitioners in the frustrating system she feels aren't doing enough. She refuses to pay an SLP who comes for a consultation, saying it was a "job interview". She resents her husband for his work.
Finances are a theme in the book, and it was quite confusing. There's no doubt Ashley and Turner are privileged. Ashley's dad helps them to buy an expensive house in Calgary (he's a doctor) and pays for them to go to the IAHP. They even rent a house to stay in while they're there. In the start, they are travelling quite a bit, for business, but still. Their daughter, Sloane, goes to the Lycee, an exclusive Calgary french school that costs 17,00o today to attend (don't know what tuition was then, but likely was still pretty steep).
Ashley bemoans their mounting debt and their father gives her 24,000 (he thinks that's all the debt we had, but he's wrong, complains Ashley) towards their line of credit. Ashley says they owe way more and have twice those limits on their credit cards. While all that debt is scary, sure..Ashley doesn't seem to acknowledge the fact that they are privileged to have that amount of credit extended to them in the first place. Most people can't. Most people also don't have fathers that can pay for all these things (he also pays for an air filtration system and renovations on the house(.Ashley vaguely touches on this when she mentions how it must be so hard for people without resources to navigate the system, but her out of touch ideas about money still follow her.
She talks about having threadbare pants and a bathing suit (noticed by her father, on a trip he pays for to Hawaiii, must be nice). No money for boots for Al. Fundraisers to help pay for Al's therapy. It baffled my mind- on one hand, she takes the kids to an (admittedly shabby sounding) trip to Banff because they need to get away (it's an expensive ski town), then in the next breath is saying she can't afford pants. Maybe skip the travel and get new pants? Or ask your dad for pants instead of the hawaii vacation? It makes no sense.
A turning point for me was when Ashley has a complete and utter meltdown, again, totally understandably, but is fixated on the fact she can't go to a friend's wedding in England. She rages about this to her husband, dramatically saying life isn't worth living if she can't go.( I know it's likely symbolic of her lost freedom and a lot more than the trip, but give me a break). At the end of her rage filled diatribe, her husband charges the trip on the line of credit, and off she goes to England. That actually enraged me. She guilt tripped her husband into letting her take an expensive trip. Not to mention, most people simply wouldn't have the line of credit in the first place that would allow them to go. They'd just have to stay home. They go to another wedding in Mexico at another point. And she's still complaining about not being able to take kids to the zoo or the wave pool, giving her daughter a simple birthday party because they have no money. It's a head-scratcher.(Her father gives her 40 bucks at one point and says to take the kids out. She desperately needs 40, yet they swing a trip to England? What?).
Just once, I would like to read a memoir of disability about parents that didn't have credit , rich parents, the means to have foundations and fundraisers and are stuck in the smaller house because they can't afford anything else. And oh yeah, they don't travel. Not to complain, I'm middle class myself, but the last time I went on any sort of "trip" it was a 2 hour car ride across the boarder where we stayed overnight. That was 8 years ago. I haven't been on an airplane since 2005. A trip to England for us might as well cost 5 million dollars, there's no way in hell we'd have any means whatsoever to pay for that, and we're far from in the minority there. My daughter doesn't like long car rides and is too anxious to be away overnight. We don't have anyone suitable she can stay with and she is too uneasy to be away from us for long. Just getting to go out to lunch while she's in school and my husband has a day off is a treat. THIS is reality for most parents of disabled children. Jetting off to Mexico and temper tantrums winding up in a reluctant trip to England is fantasy land (There's also a portion in the story where her father is set to take them all to Ireland, then somewhat bizarrely changes his mind in a couple hours about it. Ashley melts down over this, too., and had whined to her father that she wanted to be able to go to England for that infamous wedding if they were to go to Ireland. When he says they'd go to Ireland only, she's like a petulant child. Ashley seems to obsess over things, like that wedding, and stop at nothing to get what she wants.).
Ashley seems to be used to getting what she wants and aggressively tries to get it. While this works somewhat in regards to her tenacity to advocate for her son, and she did receive poor treatment from professionals at first, she's very insistent on getting her own way , that she is right, and that the professionals need to all follow her lead and the institute's programs (I wonder how many quit).
We see Al make progress, something she attributes solely to IAHP. That's dubious at best. Kleefstra syndrome is so rare it's impossible to know what his potential might be, and simply being in a home with parents that stimulate and are highly intelligent probably help.
Ashley is also judgmental of other parents. At one Kleefstra gathering on that England trip, she leaves in a panic, hell bent on helping her son so he doesn't end up like the non or limited verbal kids there.Ouch. She criticizes their methods and basically paints them as ineffective or lazy. At a later gathering somewhere else, she freaks out seeing a parent feeding their kid dairy and tries to convert anyone that will listen to the IAHP. (Another red flag of the IAHP is they claim it works for any "injured" child. No therapy works for everyone, and that's often one of the first claims of quackery.)
Ashley at one point tries to convince her husband to move to Philadelphia as she feels more centered there at the institute. Thankfully, he wisely vetoes this plan. (although his mention of Sloane having to attend a "sh!tty public school" there made me cringe. Public school, the horror!). She says the same thing when they're travelling, yet again, to Toronto., that she feels she belongs there. It's clear to me that Ashley , again understandably, is looking for escape. It's easy to think things would be so much better somewhere else. When I went to Mexico (the trip in 2005), i didn't want to come home, either. But reality is that living there isn't like an endless vacation.
Near the end of the book, Turner is running for office (something that costs a lot of money), which made me eye roll at her insistence they're financially ruined. (She goes on a rant at a family wedding when people are talking about their work success).
I sincerely hope Ashley got help (she does finally get antidepressants in the book. Strangely, the IAHP is insistent that kids not be on any medication at all..another quackery red flag), as I don't know if it was from the strain of having a disabled child, but she struck me as unstable. I honestly think she sounds bipolar. (Again, not talking out of my butt, I'm bipolar myself).A lot of the signs are there.
I also hope she asked permission to put her family into the book, as she really rakes them over the coals. In some passages, it sounds like they deserve it (her mother sounds mentally unstable as well), but in others, she sounds really extreme (yelling at her father for giving Al ice cream-no dairy- and wiping any trace of it out of Al's mouth. Remember, not an allergy,.the institute just said no dairy.). 'I'm surprised her father, a respected physician, was willing to pay for the IAHP. I guess he just really wanted to help. I wonder how much of the negative stuff about her parents was reality and how much her own perception (she does backtrack a little in the epilogue and explains a few things about her mom).
The underlying, single most problematic thing in the book was the ableism. the IAHP says it "cures" "injured" children. I was surprised that "injuries" include Autism, ADHD, and Down Syndrome..which are not brain injuries. Treatment for those with acquired brain injury (ABI) and Autism might overlap in some cases, but the treatment is totally different.
I'm realistic about my daughter's disabilities, but calling her "injured" and in need of a "cure" makes me bristle. Autism and other developmental issues are not illnesses like cancer or HIV that require a cure. Therapy to learn to better live in the world, absolutely. My daughter has been in therapies since she was diagnosed and has come a long way. But autism isn't an injury. Neither is Al's chormosomal disorder. The IAHP's ideas about brain plasticity were ahead of their time at one point and do have some basis in fact, but all quackery usually contains a grain of truth. The therapy sounds like a cash grab that can dangerously impact the family (in one extreme tragic case, a mother doing the IAHP therapy with her autistic son k!lled him in desperation after going over the edge trying to implement the program. She pled no contest and got 5 years probation as the judge acknowledged her state of mental health. while most adherents don't harm their children and again, this is an extreme example, it nonetheless is an example of how this therapy can harm families. I read that the mother had been told a few months earlier by the IAHP that she was failing and her child's delays were basically her fault.).
One speech from Janet Dorman that appalled me in the book was her response to parents who said they couldn't afford the total home overhaul the institute demands. She basically says it's life and death and you'll find a way to pay for it. Huge guilt trip, and totally unrealistic..she might as well ask some people to find a unicorn. Sometimes, there's simply no money.
Ashley is hell-bent on "Fixing" Al and seems to have trouble accepting his disability as is. While it sounds like he's made tremendous progress and I have no doubt Ashley's dedication was a big part of that, She seems focused on making Al "normal" and having him mask his disability. She's a very good mom, I think she has just bought into the whole disease-model of disability that promotes ableism.
(I was surprised and amused also that her husband wrote a book about the decline of acceptance of science during the Harper government , while pursuing the obvious snake oil of IAHP).
As a mother of a disabled child, I related to Ashley in some ways and felt for her. In others, she came across as a privileged, brash, entitled person who had manic tendencies.
I invite you to read and draw your own conclusion, and whatever you do, research the hell out of any treatment from reputable sources before you plunk down a cent towards it.
Ashley and Turner are highly educated professionals living in Calgary, AB. Chris is a Canadian-famous writer and Ashley a prominent photographer. They travel all over the world and seem to have an idealized existence until Alexander is born.
While Ashley very effectively and bravely puts herself out there in her most vulnerable and exposes the dark side of having a child with a disability that many don't talk about, I had some major problems with this book.
Before it starts to sound like I am talking out of my behind and just have no idea, I have a child with a disabilities myself-autism and adhd. I was also a social worker that worked with people with complex medical, developmental, and intellectual disabilities, and their families.While my daughter's struggles are very different from Al's, the struggles are still there. I related to Ashley when she was trying to navigate the bureaucracy of the health care system to get help for her son , and the maddening reality that the help just isn't there. That's all very true. I can't pretend at all to say I know just what Ashley went through, but in the informal camaraderie that's often there among parents of disabled children, I do "get it" to a degree in the general sense.
The book started to go downhill for me when Ashley and Turner take Al to the Institutes for Achievement of Human Potential (I'll just call it IAHP) in Philadelphia, in hopes that their radical treatment will help Al.
Always curious to know other therapies and methods, before I read much more, I did research on the IAHP. I'd vaguely heard of it, but didn't know the details.
The IAHP has been called out as quackery by doctors , researchers, scientists etc since its' inception. It even appears on the well-respected website, "quackwatch". The program costs thousands upon thousands of dollars and relies upon "treatments" that are unscientific and sometimes downright dangerous.
I can totally understand why any parent would go there and want desperately to implement the program. Who among us wouldn't try all we could to help our child? I could see how Ashley was blinded to the red flags at first, but was baffled at how she and Turner, very well educated people, continued to fall for this radical therapy.
Huge red flags that show up right away: the parents are "Conditioned" through a series of bell prompts, stern warnings, and rooms kept cold for "optimal learning" (while it's been proven heat does slow down the thinking process, the ideal temp for learning is about 68-74 or so when I looked it up, not the cold temps IAHP insisted on). I started to think of Pavlov's dogs. The speakers are enthusiastic and adamant that they can basically "cure" or "fix" an "injured" child (more on that later) through their specific treatments.
Ashley recounts with wonder a boy with severe cerebral palsy who is able to "speak" with facilitated communication (FC). My red flag went up at the very idea that this child was basically put on display to perform for the audience like a trained animal. Disgusting. The child "spoke" with an incredibly rich vocabulary with insights well beyond his years that left me skeptical. I read up more on "FC" and it has been completely , soundly rejected by the scientific and therapeutic community.It's been proven to be quackery time and time again, but sadly, desperate parents still flock to charlatans that sell this snake oil.
The program Ashley is asked to implement is beyond extreme. the IAHP frankly sounds like a cult. They have to completely revamp their diets: no sugar, no gluten, no wheat, no dairy. All food has to be strictly weighed and measured. It's insisted upon that Al eat green veggies at breakfast.Ashley does this not only for Al, but for the entire family. That struck me as extremely unfair. While it might be easier to change the diet for everyone, how fair was it to her 5 year old daughter who was suddenly not allowed ice cream or a popsicle?
Daily "patterning",a way that is supposed to ignite brain plasticity, has to be done several times a day with the help of tons of volunteers, who can be anyone, they don't have to be trained. (Patterning has been denounced as an outdated mode of therapy that is based on faulty assumptions about the brain). Al has to have "mask treatment" something like 40 times a day, a bizarre treatment that's supposed to send more oxygen to the brain (sounds like HBOT, a therapy that's been proven inconclusive at best for people with brain injuries). There's breathing pattern treatments. Flashcards. The treatments all have to be painstakingly detailed. They take up Ashley's entire day and part of the night, every day.
If they don't adhere strictly to the program and none other, they get booted. They have to hand in reams of detailed progression notes to the institute to be able to come back.
Ashley begins to, understandably, enter a downward spiral. She becomes ill and depressed. Due to a shortage of doctors, she can't get medical care. She feels isolated. She feels overwhelmed. The program takes over their entire lives and she is pushing it to the extreme. Ashley sounds like a perfectionist and, although I'm no psychiatrist, she sounds manic in several areas with the fervour she puts into any project, but then especially this program for Al. The whole house has to be cleaned of "toxins", any pillow beyond a year old gets thrown out. All-natural cleaning supplies. Fancy water purifiers. Air purifiers. House inspections. The whole thing , frankly, seems extreme and absolutely ridiculous. The IAHP warns you that others will think you;'re crazy and try to get you off track, but don't deviate for a second from the program. They know best. Sound like a cult yet? (In fact, the director, Janet Dorman, is a Scientologist. She claims that has no bearing on her work there. hmmm..)
Here's where I might sound mean, but there were many spots when Ashley just started to plain annoy me.
She berates friends and family for not helping out enough, for not wanting to do the "patterning". She's extremely harsh and critical of her own family, especially her sister and her parents (whom she bizarrely calls "Bruce" and "Val" and then "mom" and "dad" at intervals. It's weird and confusing.). She rages at the practitioners in the frustrating system she feels aren't doing enough. She refuses to pay an SLP who comes for a consultation, saying it was a "job interview". She resents her husband for his work.
Finances are a theme in the book, and it was quite confusing. There's no doubt Ashley and Turner are privileged. Ashley's dad helps them to buy an expensive house in Calgary (he's a doctor) and pays for them to go to the IAHP. They even rent a house to stay in while they're there. In the start, they are travelling quite a bit, for business, but still. Their daughter, Sloane, goes to the Lycee, an exclusive Calgary french school that costs 17,00o today to attend (don't know what tuition was then, but likely was still pretty steep).
Ashley bemoans their mounting debt and their father gives her 24,000 (he thinks that's all the debt we had, but he's wrong, complains Ashley) towards their line of credit. Ashley says they owe way more and have twice those limits on their credit cards. While all that debt is scary, sure..Ashley doesn't seem to acknowledge the fact that they are privileged to have that amount of credit extended to them in the first place. Most people can't. Most people also don't have fathers that can pay for all these things (he also pays for an air filtration system and renovations on the house(.Ashley vaguely touches on this when she mentions how it must be so hard for people without resources to navigate the system, but her out of touch ideas about money still follow her.
She talks about having threadbare pants and a bathing suit (noticed by her father, on a trip he pays for to Hawaiii, must be nice). No money for boots for Al. Fundraisers to help pay for Al's therapy. It baffled my mind- on one hand, she takes the kids to an (admittedly shabby sounding) trip to Banff because they need to get away (it's an expensive ski town), then in the next breath is saying she can't afford pants. Maybe skip the travel and get new pants? Or ask your dad for pants instead of the hawaii vacation? It makes no sense.
A turning point for me was when Ashley has a complete and utter meltdown, again, totally understandably, but is fixated on the fact she can't go to a friend's wedding in England. She rages about this to her husband, dramatically saying life isn't worth living if she can't go.( I know it's likely symbolic of her lost freedom and a lot more than the trip, but give me a break). At the end of her rage filled diatribe, her husband charges the trip on the line of credit, and off she goes to England. That actually enraged me. She guilt tripped her husband into letting her take an expensive trip. Not to mention, most people simply wouldn't have the line of credit in the first place that would allow them to go. They'd just have to stay home. They go to another wedding in Mexico at another point. And she's still complaining about not being able to take kids to the zoo or the wave pool, giving her daughter a simple birthday party because they have no money. It's a head-scratcher.(Her father gives her 40 bucks at one point and says to take the kids out. She desperately needs 40, yet they swing a trip to England? What?).
Just once, I would like to read a memoir of disability about parents that didn't have credit , rich parents, the means to have foundations and fundraisers and are stuck in the smaller house because they can't afford anything else. And oh yeah, they don't travel. Not to complain, I'm middle class myself, but the last time I went on any sort of "trip" it was a 2 hour car ride across the boarder where we stayed overnight. That was 8 years ago. I haven't been on an airplane since 2005. A trip to England for us might as well cost 5 million dollars, there's no way in hell we'd have any means whatsoever to pay for that, and we're far from in the minority there. My daughter doesn't like long car rides and is too anxious to be away overnight. We don't have anyone suitable she can stay with and she is too uneasy to be away from us for long. Just getting to go out to lunch while she's in school and my husband has a day off is a treat. THIS is reality for most parents of disabled children. Jetting off to Mexico and temper tantrums winding up in a reluctant trip to England is fantasy land (There's also a portion in the story where her father is set to take them all to Ireland, then somewhat bizarrely changes his mind in a couple hours about it. Ashley melts down over this, too., and had whined to her father that she wanted to be able to go to England for that infamous wedding if they were to go to Ireland. When he says they'd go to Ireland only, she's like a petulant child. Ashley seems to obsess over things, like that wedding, and stop at nothing to get what she wants.).
Ashley seems to be used to getting what she wants and aggressively tries to get it. While this works somewhat in regards to her tenacity to advocate for her son, and she did receive poor treatment from professionals at first, she's very insistent on getting her own way , that she is right, and that the professionals need to all follow her lead and the institute's programs (I wonder how many quit).
We see Al make progress, something she attributes solely to IAHP. That's dubious at best. Kleefstra syndrome is so rare it's impossible to know what his potential might be, and simply being in a home with parents that stimulate and are highly intelligent probably help.
Ashley is also judgmental of other parents. At one Kleefstra gathering on that England trip, she leaves in a panic, hell bent on helping her son so he doesn't end up like the non or limited verbal kids there.Ouch. She criticizes their methods and basically paints them as ineffective or lazy. At a later gathering somewhere else, she freaks out seeing a parent feeding their kid dairy and tries to convert anyone that will listen to the IAHP. (Another red flag of the IAHP is they claim it works for any "injured" child. No therapy works for everyone, and that's often one of the first claims of quackery.)
Ashley at one point tries to convince her husband to move to Philadelphia as she feels more centered there at the institute. Thankfully, he wisely vetoes this plan. (although his mention of Sloane having to attend a "sh!tty public school" there made me cringe. Public school, the horror!). She says the same thing when they're travelling, yet again, to Toronto., that she feels she belongs there. It's clear to me that Ashley , again understandably, is looking for escape. It's easy to think things would be so much better somewhere else. When I went to Mexico (the trip in 2005), i didn't want to come home, either. But reality is that living there isn't like an endless vacation.
Near the end of the book, Turner is running for office (something that costs a lot of money), which made me eye roll at her insistence they're financially ruined. (She goes on a rant at a family wedding when people are talking about their work success).
I sincerely hope Ashley got help (she does finally get antidepressants in the book. Strangely, the IAHP is insistent that kids not be on any medication at all..another quackery red flag), as I don't know if it was from the strain of having a disabled child, but she struck me as unstable. I honestly think she sounds bipolar. (Again, not talking out of my butt, I'm bipolar myself).A lot of the signs are there.
I also hope she asked permission to put her family into the book, as she really rakes them over the coals. In some passages, it sounds like they deserve it (her mother sounds mentally unstable as well), but in others, she sounds really extreme (yelling at her father for giving Al ice cream-no dairy- and wiping any trace of it out of Al's mouth. Remember, not an allergy,.the institute just said no dairy.). 'I'm surprised her father, a respected physician, was willing to pay for the IAHP. I guess he just really wanted to help. I wonder how much of the negative stuff about her parents was reality and how much her own perception (she does backtrack a little in the epilogue and explains a few things about her mom).
The underlying, single most problematic thing in the book was the ableism. the IAHP says it "cures" "injured" children. I was surprised that "injuries" include Autism, ADHD, and Down Syndrome..which are not brain injuries. Treatment for those with acquired brain injury (ABI) and Autism might overlap in some cases, but the treatment is totally different.
I'm realistic about my daughter's disabilities, but calling her "injured" and in need of a "cure" makes me bristle. Autism and other developmental issues are not illnesses like cancer or HIV that require a cure. Therapy to learn to better live in the world, absolutely. My daughter has been in therapies since she was diagnosed and has come a long way. But autism isn't an injury. Neither is Al's chormosomal disorder. The IAHP's ideas about brain plasticity were ahead of their time at one point and do have some basis in fact, but all quackery usually contains a grain of truth. The therapy sounds like a cash grab that can dangerously impact the family (in one extreme tragic case, a mother doing the IAHP therapy with her autistic son k!lled him in desperation after going over the edge trying to implement the program. She pled no contest and got 5 years probation as the judge acknowledged her state of mental health. while most adherents don't harm their children and again, this is an extreme example, it nonetheless is an example of how this therapy can harm families. I read that the mother had been told a few months earlier by the IAHP that she was failing and her child's delays were basically her fault.).
One speech from Janet Dorman that appalled me in the book was her response to parents who said they couldn't afford the total home overhaul the institute demands. She basically says it's life and death and you'll find a way to pay for it. Huge guilt trip, and totally unrealistic..she might as well ask some people to find a unicorn. Sometimes, there's simply no money.
Ashley is hell-bent on "Fixing" Al and seems to have trouble accepting his disability as is. While it sounds like he's made tremendous progress and I have no doubt Ashley's dedication was a big part of that, She seems focused on making Al "normal" and having him mask his disability. She's a very good mom, I think she has just bought into the whole disease-model of disability that promotes ableism.
(I was surprised and amused also that her husband wrote a book about the decline of acceptance of science during the Harper government , while pursuing the obvious snake oil of IAHP).
As a mother of a disabled child, I related to Ashley in some ways and felt for her. In others, she came across as a privileged, brash, entitled person who had manic tendencies.
I invite you to read and draw your own conclusion, and whatever you do, research the hell out of any treatment from reputable sources before you plunk down a cent towards it.
This entire review has been hidden because of spoilers.
February 24, 2022
This will go onto my list of all time favourite audiobooks…her narration was so real, at times I felt like I was standing in her kitchen with her. Excellent memoir with heart, humour and excellent plot line.
September 1, 2021
As the father of a daughter with the same rare genetic disease, Kleefstra Syndrome, I related to Ashley’s story in so many ways. It’s cathartic to read about another parent’s anger, frustration, and eventual coming to terms with the impact of such a diagnosis on not only your child, but on your own plans and dreams. If you have a child with a developmental delay or know anyone that does, I highly recommend this book.
May 21, 2021
In grade eleven, we had a sweet but naïve nun whose job was to teach literature. Instead, we were required to read a memoir by a mother of a newborn with some kinds of disabilities. The mom never doubted God would rescue her, as she was pious, Catholic, and best of all, lived next door to (the also Catholic) Roy Rogers and Dale Evans!
Her baby was born with a disfiguring black streak, so she prayed and prayed, until a miracle happened! The streak disappeared, though her infant’s other disability remained. Catholicism, Roy and Dale made many cameos in that book.
It is a miracle that I was able to pick up another memoir by a mom with a disabled child, but I’m glad I did. In My Own Blood, by Ashley Bristowe, is the opposite of pious, sentimental, bad writing. It’s vivid, harrowing, sometimes funny and always believable. Whether we’re moms or not, whether our children are able bodied or not, we all face psychological pressures that are sometimes nearly unendurable, and that is what this book is about.
Before giving birth to Alex, Ashley has a vibrant career that she expects to continue after her second child is born. She had worked and travelled with her husband and infant daughter without issues. But Alex is not typical, and diagnoses come in slowly, increasingly more alarming. He has Kleefstra Syndrome. Ashley cancels her work trip to Dubai, crushed to be told that he is so profoundly disabled that he will never walk or talk.
But she insists that he will walk, talk, read, argue. She finds an American group of Institutes that has a program for parents to teach their children with severe intellectual disabilities how to discover their abilities. The program is expensive and it swallows her entire day, every day.
She is overwhelmed by the poverty she now lives in, the demands of the program, the slow and sometimes invisible progress that Alex makes. Her century old house needs such repairs that the old dining room floor is removed. One night she collapses on her kitchen floor, literally staring into the abyss that is her basement, despondent and overwhelmed. She realizes that no one will come to her rescue.
Although her husband is magnificently stable and supportive, he has to not only make enough money to cover the salary she has lost, but also the new bills that Alex’s treatment requires. So they go into debt, another abyss that terrifies them both. Meanwhile volunteers come to help with the program though many friends fall away. Ashley realizes that “Alexander makes the randomness of the universe real, peels back the façade that something like this could never happen to people who have their lives together… But the black balloon can land in your yard, no matter what you do, who you are, how you plan, or what you want.”
Not only does Alex’s program take up every minute, even into his sleep, but the paperwork is onerous. Ashley has to negotiate the provincial bureaucracy for funding Alex’s treatments, feeling as lost as Orpheus does in the fifties film, Black Orpheus, when he goes to the Bureau of Lost Souls, with useless government forms floating and drifting at his feet.
After months of getting nowhere with the bureaucrats, she escapes the house late at night, and crunches through the snow. But she has no actual place to go, so she spreads her arms, and twirls, a madwoman in the night. At another point, she notes she’s not getting enough exercise. “I would like to dance, it would make me feel much better but I can’t go out to the bar. I’d never make it to midnight, when the good music starts. Where are the mid-afternoon raves for aging Gen-Xers with kids?”
At the Institutes, she learns that “’What your kid wants more than anything is your respect. And you’re going to give it to them. The medical world doesn’t respect your children. But we do. We are going to show you how you help your children to be extraordinary.’”
The program seems to be insanely demanding, but at other points in the book Ashley meets children with the syndrome that Alex has, but those children seem locked into themselves, whereas Alex has made progress, reassuring her she’s on the right track. Even so, the demands of the continuous exercises for Alex, from morning to night, her husband and daughter, her poverty, her acute loneliness, all drive her to near madness. She tells no one, but she thinks “I’m broken. I am not thinking clearly, but there is no emergency anymore other than that I’m broken, and it doesn’t seem to matter because obviously you can be broken broken losing time blackouts broken and keep doing this work for the child, and the emergency, the emergency is in my head now.”
It becomes even more glaringly obvious that she has pushed beyond her endurance when she finally has a brief holiday, hiking through rural England, on her way to a good friend’s wedding. One morning, she suddenly finds herself in a half sitting position. She takes this too calmly. Then she topples to the ground, immobile, telling herself that she’s fine --the trail is safe enough to spend the night, if need be.
Eventually she feels around in her backpack for energy bars and water, and once restored, makes it to the hostel where the management is so alarmed at her appearance that they later check on her to see if she’s still alive.
Human endurance is almost magical, when it happens. We likely won’t ever go through what Ashley goes through to rescue Alex from his initial situation, but we will have to endure situations that we assume will be unbearable. That black balloon can land in your yard, in your home, on your head. This book might give you the courage to deal with it.
Her baby was born with a disfiguring black streak, so she prayed and prayed, until a miracle happened! The streak disappeared, though her infant’s other disability remained. Catholicism, Roy and Dale made many cameos in that book.
It is a miracle that I was able to pick up another memoir by a mom with a disabled child, but I’m glad I did. In My Own Blood, by Ashley Bristowe, is the opposite of pious, sentimental, bad writing. It’s vivid, harrowing, sometimes funny and always believable. Whether we’re moms or not, whether our children are able bodied or not, we all face psychological pressures that are sometimes nearly unendurable, and that is what this book is about.
Before giving birth to Alex, Ashley has a vibrant career that she expects to continue after her second child is born. She had worked and travelled with her husband and infant daughter without issues. But Alex is not typical, and diagnoses come in slowly, increasingly more alarming. He has Kleefstra Syndrome. Ashley cancels her work trip to Dubai, crushed to be told that he is so profoundly disabled that he will never walk or talk.
But she insists that he will walk, talk, read, argue. She finds an American group of Institutes that has a program for parents to teach their children with severe intellectual disabilities how to discover their abilities. The program is expensive and it swallows her entire day, every day.
She is overwhelmed by the poverty she now lives in, the demands of the program, the slow and sometimes invisible progress that Alex makes. Her century old house needs such repairs that the old dining room floor is removed. One night she collapses on her kitchen floor, literally staring into the abyss that is her basement, despondent and overwhelmed. She realizes that no one will come to her rescue.
Although her husband is magnificently stable and supportive, he has to not only make enough money to cover the salary she has lost, but also the new bills that Alex’s treatment requires. So they go into debt, another abyss that terrifies them both. Meanwhile volunteers come to help with the program though many friends fall away. Ashley realizes that “Alexander makes the randomness of the universe real, peels back the façade that something like this could never happen to people who have their lives together… But the black balloon can land in your yard, no matter what you do, who you are, how you plan, or what you want.”
Not only does Alex’s program take up every minute, even into his sleep, but the paperwork is onerous. Ashley has to negotiate the provincial bureaucracy for funding Alex’s treatments, feeling as lost as Orpheus does in the fifties film, Black Orpheus, when he goes to the Bureau of Lost Souls, with useless government forms floating and drifting at his feet.
After months of getting nowhere with the bureaucrats, she escapes the house late at night, and crunches through the snow. But she has no actual place to go, so she spreads her arms, and twirls, a madwoman in the night. At another point, she notes she’s not getting enough exercise. “I would like to dance, it would make me feel much better but I can’t go out to the bar. I’d never make it to midnight, when the good music starts. Where are the mid-afternoon raves for aging Gen-Xers with kids?”
At the Institutes, she learns that “’What your kid wants more than anything is your respect. And you’re going to give it to them. The medical world doesn’t respect your children. But we do. We are going to show you how you help your children to be extraordinary.’”
The program seems to be insanely demanding, but at other points in the book Ashley meets children with the syndrome that Alex has, but those children seem locked into themselves, whereas Alex has made progress, reassuring her she’s on the right track. Even so, the demands of the continuous exercises for Alex, from morning to night, her husband and daughter, her poverty, her acute loneliness, all drive her to near madness. She tells no one, but she thinks “I’m broken. I am not thinking clearly, but there is no emergency anymore other than that I’m broken, and it doesn’t seem to matter because obviously you can be broken broken losing time blackouts broken and keep doing this work for the child, and the emergency, the emergency is in my head now.”
It becomes even more glaringly obvious that she has pushed beyond her endurance when she finally has a brief holiday, hiking through rural England, on her way to a good friend’s wedding. One morning, she suddenly finds herself in a half sitting position. She takes this too calmly. Then she topples to the ground, immobile, telling herself that she’s fine --the trail is safe enough to spend the night, if need be.
Eventually she feels around in her backpack for energy bars and water, and once restored, makes it to the hostel where the management is so alarmed at her appearance that they later check on her to see if she’s still alive.
Human endurance is almost magical, when it happens. We likely won’t ever go through what Ashley goes through to rescue Alex from his initial situation, but we will have to endure situations that we assume will be unbearable. That black balloon can land in your yard, in your home, on your head. This book might give you the courage to deal with it.
May 15, 2021
Able-ism watch out! A bloody eyewitness (can't put down) account of bringing a special needs child into the world with love above all, but also laughter, rage and a warm embrace to all caring for special needs people and a reminder to those of us who regularly forget that we have an obligation as a society to do so.
May 13, 2021
An incredible memoir of one Alberta woman's journey and struggles parenting a child with a rare genetic disorder that caused severe developmental delays. Ashley's life is turned upside down when her son Alexander was diagnosed as one of only 72 children born with the newly named Kleefstra syndrome (a missing portion of chromosome). She was told he would never talk or walk, yet with help from American brain-injury institutions she followed a strict diet and therapy regime and her son has learned to do these things and more. This is a great look at how parents of children with disabilities have to continually fight for and be vocal advocates for their children, trying to get the medical supports they need. She also goes into detail about her own struggles with mental health and how the lack of support she found from her family and friends weighed on her. I really related to her concerns and fears about using anti-anxiety and anti-depression meds and having to weigh that against the consequences of not using them. This is an eye-opening look at life as a caregiver for a child with disabilities and the shortcomings of the Canadian disability supports and funding programs. Highly, highly recommend this book!
Favorite quotes:
"The world considers it the default thing to park your disabled kid inside dismally low expectations. If I side with my child and try to build a world in which he can live and prosper, I'm very clearly on my own."
"We seem to expect people to be capable of carrying on no matter the break downs in family support, no matter their mental health or marginalization, absorb the shock, the loss, the inconvenience, the delay, and be bigger, better and capable anyway."
"My worry that he'll never be a normal child is bottomless and exhausting."
"Parents with disabled children need friends, colleagues, a community, a baseline income to help us make ends meat but the government would rather pay other people to take care of our children than make it possible for us to survive while taking care of them ourselves. Our society does not make that kind of community life possible."
"I'm lonely and the isolation is eating me alive."
"What am I worth? What is what I've lost worth? How much does my grief weigh?"
Favorite quotes:
"The world considers it the default thing to park your disabled kid inside dismally low expectations. If I side with my child and try to build a world in which he can live and prosper, I'm very clearly on my own."
"We seem to expect people to be capable of carrying on no matter the break downs in family support, no matter their mental health or marginalization, absorb the shock, the loss, the inconvenience, the delay, and be bigger, better and capable anyway."
"My worry that he'll never be a normal child is bottomless and exhausting."
"Parents with disabled children need friends, colleagues, a community, a baseline income to help us make ends meat but the government would rather pay other people to take care of our children than make it possible for us to survive while taking care of them ourselves. Our society does not make that kind of community life possible."
"I'm lonely and the isolation is eating me alive."
"What am I worth? What is what I've lost worth? How much does my grief weigh?"
May 24, 2021
This is a brilliant book, full stop. The writing is intense and original and Ashley Bristowe is Jesus-Christ-brutally-honest with herself and others as she weaves the story of how she, her family, her community and the mainstream medical profession reacted to the birth of their son with a rare genetic disorder and how she fought to fulfill Alexander's huge potential while at the edge of losing herself. Bristowe is an incredibly gifted writer, her style is irreverent, evocative, and hit-you-in-the-face impactful and also refreshingly informal - full of reflections, teasers and funny (and shocking) self editorials in brackets. I was pointlessly trying to get other stuff done all weekend, but this book kept calling me back... I think it will change many people’s lives to read it, and they will be emboldened to be as exponentially fierce and honest in their own struggles, whatever they are. And they will never see brain injured children or their families or their mothers (or any mother!!!) or the society at large the same way again.
March 28, 2024
I read the reviews before starting this book so I knew it was a sad struggle but some humor did come out in her writing. Maybe in a way by writing the book she was justifying the sacrifice she made for her son, Idk. But wait, she's a writer anyway.
She was very determined and strong willed I'd say and it looks like their hard work in the program and the financial investment, she feels was worthwhile as her son can walk and read. Sadly not everyone has the support and ability to go this far to help their disabled kids.
I have a friend who volunteers with special needs teens and another friend has raised a boy with downs syndrome so am aware of challenges and helps. It still surprises me that in 2024 with all our technology and our North American health we have kids that are born with such handicaps. I understand This one was a rare genetic disorder.
I read the book a couple weeks ago and I guess I'm still thinking on it. It's quite detailed and may help people facing similar situations or people who work in the field.
She was very determined and strong willed I'd say and it looks like their hard work in the program and the financial investment, she feels was worthwhile as her son can walk and read. Sadly not everyone has the support and ability to go this far to help their disabled kids.
I have a friend who volunteers with special needs teens and another friend has raised a boy with downs syndrome so am aware of challenges and helps. It still surprises me that in 2024 with all our technology and our North American health we have kids that are born with such handicaps. I understand This one was a rare genetic disorder.
I read the book a couple weeks ago and I guess I'm still thinking on it. It's quite detailed and may help people facing similar situations or people who work in the field.
September 5, 2023
This book had an interesting concept, but at MANY instances I found the author very unlikeable. She seems overly critical of everyone (family, friends, health professionals, government, etc) and often seems to push people away if they try to help her. She seems to have unrealistic expectations of others. She complains about not having money yet manages to go to England to attend a friends wedding. She talks about being desperate to leave, says she could live without her kids, but she would miss her husband. What? There were a few quotes that stood out to me, but that’s about all I can say that’s positive about these 400 pages. (“i didn’t think I could love a boy, and I was given a boy I could love” while talking about the obnoxious things her son wouldn’t do/say when he grew up and a paragraph about how it feels when you’re going through hell with your child and people don’t reach out - been there).
April 4, 2021
It’s amazing how this brilliant, funny, bracingly honest book about parenting a special needs child perfectly encapsulates the rage, exhaustion, isolation, and borderline madness I’ve gone through attempting to parent two standard-issue children through this pandemic while also trying to maintain some semblance of a so-called professional life. For me, Ashley Bristowe’s sharp, hilarious, pitch-perfect description of what it feels like get up every morning to run another leg of a seemingly endless and decidedly unfun obstacle course was totally absorbing and validating. And while this memoir made me laugh really hard, in its unflinching description of family relationships and painful truth-telling, it reminds me of Karl Ove Knausgaard’s My Struggle. A challenging yet highly readable read.
April 13, 2021
You will find yourself re-reading passages just for the turn of phrase or the never-before-heard similes. Bristowe's writing is entertaining, to be sure: I kept searching the text for a "like button" (weird reflex, but there it is). The paradox, though, is that as much as you'll enjoy the agility of her prose, her message is profound and unsettling. You'll read and read, only to feel beaten bloody by the narrative when you finally put it down for a meal or to go pick up your own kids... A must-read for all families, friends, caregivers, health providers and (yes) politicians invested in the welfare of special needs individuals. There is heart, grit, love, defeat, and exhausted hope from a smart, capable, and committed parent, who expects the same of you as a reader. Definitely worth the brain calluses.
April 14, 2021
Ashley is so honest about that crazy balancing act of being a person and also a parent...She writes so poignantly about how dreams and goals had to be recalibrated, about reinventing herself because she was on a path she never imagined. I was overwhelmed by Ashley's strength and determination to dig in and move forward. And oh my goodness, you find yourself celebrating and sinking into all the moments of this wonderfully written journey (the audiobook is pretty fun to listen to as well).
As well, this book made me reflect on how it is to be a therapist 'in the system' working with families who are moving through incredible journeys with their children--how we are with them, and moreso, how we can do better to support. It is a great book if you are a pediatric therapist of any kind.
As well, this book made me reflect on how it is to be a therapist 'in the system' working with families who are moving through incredible journeys with their children--how we are with them, and moreso, how we can do better to support. It is a great book if you are a pediatric therapist of any kind.
April 5, 2021
In her raw, poetic, and heart-wrenching memoir Ashley Bristowe takes the reader with her through the completely unexpected diagnosis of her son Alexander with a rare genetic disorder. Despite the lack of support by the medical establishment, the government assistance programs, and her own extended family, Ashley, her husband and their young daughter undertake an extensive therapy program which transforms their house, diet, friendships, familial relationships and financial stability in order to unlock Alexander’s potential. Fuelled by instinct and sheer single-mindedness, Ashley demonstrates a level of maternal love and commitment that strains her own mental and physical health. At its core, this book is about dashed expectations and the strength it requires to forge tenuous new ones.
June 25, 2021
Rating: 3.5/5
I believe that my rating could have been much higher if only I did not have a big slump which basically affects my whole reading process as I'm not in the mood to read.
Nonetheless, this memoir captures the raw and heartbreaking story of a mother doing everything she can 24/7 to help her child diagnosed with a rare genetic disorder despite having her own struggles and the lack of support from her family and friends, and the healthcare community. It is definitely an impactful and educational book that everyone should give it a try and read it!
Thank you to the author, Goodreads, and Penguin Random House Canada for the giveaway!
I believe that my rating could have been much higher if only I did not have a big slump which basically affects my whole reading process as I'm not in the mood to read.
Nonetheless, this memoir captures the raw and heartbreaking story of a mother doing everything she can 24/7 to help her child diagnosed with a rare genetic disorder despite having her own struggles and the lack of support from her family and friends, and the healthcare community. It is definitely an impactful and educational book that everyone should give it a try and read it!
Thank you to the author, Goodreads, and Penguin Random House Canada for the giveaway!
October 16, 2021
(4.5 stars) Such a raw and emotional memoir. The description of Alexander's 2nd birthday just about ripped my heart out. It's devastating how challenging it is to get appropriate care for kids with special needs and complex medical problems, and what a financial burden it is, even in Canada - and though I was well aware of that already, this really gets in to the details.
I love that the author both recognizes that The Institutes is a bit of a cult but is still willing to jump right in since it's the only thing she can see that will actually help her son. I'd actually be really interested in reading more about his development after the book leaves off.
I love that the author both recognizes that The Institutes is a bit of a cult but is still willing to jump right in since it's the only thing she can see that will actually help her son. I'd actually be really interested in reading more about his development after the book leaves off.
April 6, 2021
This book made me laugh, cry, feel ashamed and feel empowered. That is a lot of feelings for someone who isn’t a parent at all, but the gut-wrenchingly honest tone of this book which is filled with both hope and despair, all packaged in a funny while-now-you-know tone, evokes ALL the feels.
If ever you’ve felt alone while you tried to do the impossible because there were no other options, you'll be able to relate.
If ever you’ve felt alone while you tried to do the impossible because there were no other options, you'll be able to relate.
June 21, 2022
Wow! What an engrossing, enraging, and engaging story of a family blindsided by the birth of their severely disabled second child.
The ferocity of their love and commitment as well as their floundering in the depths of despair takes the reader on a rollercoaster ride of emotions.
As a Canadian I also appreciated the familiarity of the Calgary setting. One caveat - I don’t get the author’s Toronto-worship. 🤪
The ferocity of their love and commitment as well as their floundering in the depths of despair takes the reader on a rollercoaster ride of emotions.
As a Canadian I also appreciated the familiarity of the Calgary setting. One caveat - I don’t get the author’s Toronto-worship. 🤪
February 7, 2021
a MUST read .....this raw emotional true life story of a mother doing everything in her power to help her son reach his potential. One of the first children to be diagnosed with Kleefstra syndrome any kind of real help was very hard to find. This tiger of a mother , amidst great frustration with officialdom, gives her ALL and more to do what is needed for Alexander.
September 4, 2021
very disappointed with this book and the author who is a publicity seeking Charlton seeking to gain from the special needs of her child.
the book is poorly written and i found it very difficult to get through likely because i saw that this author is a Charlton. Do not waste your time with this book there are far better books on the subject.
the book is poorly written and i found it very difficult to get through likely because i saw that this author is a Charlton. Do not waste your time with this book there are far better books on the subject.
October 12, 2021
A moving portrait all the more powerful for the unmentioned reality that there are so few people who would have the support, energy and means to write their stories. Bristowe is unflinchingly honest and candid about the range of personal, financial and institutional challenges that she has faced over the last 12 years, from the time of her son's diagnosis to today.
November 28, 2021
Able-ism watch out! A bloody eyewitness (can't put down) account of bringing a special needs child into the world with love above all, but also laughter, rage and a warm embrace to all caring for special needs people and a reminder to those of us who regularly forget that we have an obligation as a society to do so.
March 6, 2025
Beautiful and devastating, and for this mom, lots to relate to. I loved the little bits of current voice offsetting the past voice, I thought this was very well done. The humour is real and a great contrast to the hard, and the author is 100% right that we all can and need to do better. Great bar-raising!
May 12, 2022
After 6 chapters, I gave up, skipped to the end, and found out the kid was basically delayed but ok. Whichever editor let so much trash get through to what should be a compelling story might want to consider a career change. Snowplough operator, perhaps?
November 8, 2021
In Ashley Bristowe’s memoir she shares the the heart wrenching challenges of parenting a disabled child. Her heartbreak and darkness speaks loudly in this book.
April 7, 2022
A very readable memoir that is so raw. At times it was so hard to read, but I kept saying to myself ‘Bristowe wrote this recently so I can assume she comes out the other side of this’.
February 27, 2023
A great insight into how hard it is to raise a very handicapped child.
Lots to unpack and lots of other baggage that added to the author’s challenges.
Lots to unpack and lots of other baggage that added to the author’s challenges.
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