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My Own Blood

A Memoir of Special-Needs Parenting

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My Own Blood

Auteur(s): Ashley Bristowe
Narrateur(s): Ashley Bristowe
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À propos de cet audio

 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. Maternité Militants Politique et militantisme Relations Santé des enfants Éducation des enfants Santé Besoin spécial Mémoires Histoires réconfortantes
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The author reads her own book, which I normally enjoy…. But in this case, she just downright got on my nerves. Despite her heroic efforts and accomplishments with her disabled son, I just felt like she was trying to be too clever by half. I almost gave up but then got to the part about The Institutes in Philadelphia, and things got a lot more interesting. I put up with the author, and frankly it was a fascinating and enlightening book. Overall I give it 4 stars because that author just bugged me throughout… between the gratuitous cursing and constant put-downs of Calgary (among other things)… otherwise it’s a superb read offering insight into this life no-one wants or chooses, but some rise above (as this family did) - and bravo to them! Wow. I can’t say I would have the wherewithal to do what they did…. And so grateful my kids are perfectly healthy, there by the grace of God go I.

What a story, but…

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My Own Blood should be a required read especially for those who work in “Special Education”.

Ashley Bristowe’s Memoir of her life as a mother raising a child with special needs is a story, a life all should read. She is honest, raw and riveting! Her struggles are real.
Ashley’s open and forthcoming information about her family’s difficult path through the health care system as well as the government’s lack of funding, bureaucracy, and the effects of stress on a family and how to deal with LIFE is eye opening- shocking!
This book shows us that we, as a country are failing our MOST VULNERABLE PERSONS and that seemingly we are ok with that…. It’s heartbreaking!

Ashley’s strength, passion vulnerability and love for her whole family is apparent throughout this book.

My Own Blood is a book that forces us to consider and reconsider how we work as a community and how we can truly make the world, our country a better place for all.
Thank you for this lasting read Ashley!

My Own Blood should be a required read!

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This memoir lays bare the hurdles that families have to constantly clear to access services for a child with special needs. The physical, social, psychological, and financial collateral damage to the family is frighteningly honest. The soul crushing burden placed on the primary caregiver is explored with great honesty. Loved the undercurrent, woven throughout, that encourages us all to ‘do better’ and behave with a greater sense of community. I have never read anything that captures the essence of what is means to parent a child with special needs as well as this book does. Well written with excellent narration by the author.

A candid look into the reality of disability and the strength it takes to keep going.

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