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Forever Boy: A Mother's Memoir of Autism and Finding Joy
With her popular blog, Finding Cooper's Voice, Kate Swenson has provided hope and comfort for hundreds of thousands of parents of children with Autism. Now, Kate shares her inspiring story in this powerful memoir about motherhood and unconditional love
When Kate Swenson's son Cooper was diagnosed with severe, nonverbal autism, her world stopped. She had always dreamed of having the perfect family life. She hadn't signed up for life as a mother raising a child with a disability.
At first, Kate experienced the grief of broken dreams. Then she felt the frustration and exhaustion of having to fight for your child in a world that is stacked against them. But through hard work, resilience and personal growth, she would come to learn that Cooper wasn't the one who needed to change. She was. And it was this transformation that led Kate to acceptance--and ultimately joy. In Forever Boy, Kate shares her inspiring journey with honesty and compassion, offering solace and hope to others on this path and illuminating the strength and perseverance of mothers.
When Kate Swenson's son Cooper was diagnosed with severe, nonverbal autism, her world stopped. She had always dreamed of having the perfect family life. She hadn't signed up for life as a mother raising a child with a disability.
At first, Kate experienced the grief of broken dreams. Then she felt the frustration and exhaustion of having to fight for your child in a world that is stacked against them. But through hard work, resilience and personal growth, she would come to learn that Cooper wasn't the one who needed to change. She was. And it was this transformation that led Kate to acceptance--and ultimately joy. In Forever Boy, Kate shares her inspiring journey with honesty and compassion, offering solace and hope to others on this path and illuminating the strength and perseverance of mothers.
288 pages, Hardcover
First published April 5, 2022
297 people are currently reading
3528 people want to read
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Displaying 1 - 30 of 485 reviews
April 5, 2022
♾ Autism Appreciation Month - Book Feature and Review ♾
There is so much to say about this book- I laughed, I cried and I was instantly taken back to the early days of receiving an autism diagnosis for our son.
Kate is an amazing writer and captures the struggles and joys that come with being a special needs parent. If you already follow Kate @findingcoopersvoice you know about her autistic son Cooper and you’ve been given a quick glimpse of her beautiful family, but this book takes a deep dive into their story from the very beginning. We learn about how Kate met her husband, about the challenges they faced as they sought a diagnosis for their firstborn son and about how they healed as a family after hitting their lowest point. I shed so many tears reading these pages and found so many similarities between their story and our own with our nonverbal/autistic son Jack.
Kate is a mother I truly look up to, and her son Cooper is a child I always root for from afar. I’ve seen him achieve so many things with the support of his family and his growth goes to show that our children are lifelong learners and capable of so much more than we give them credit for. And seeing Cooper reach new milestones is a testament to how hard his family fights for him by advocating and educating others about autism.
April is autism appreciation month and it is the perfect time to pick up Forever Boy. You don’t have to be on the same journey as a parent to appreciate this story and the exceptional woman and child behind it. I’m truly blown away by Kate- she continues to amaze me with her strength and vulnerability. Thank you for this book Kate- this is a must read for all.
There is so much to say about this book- I laughed, I cried and I was instantly taken back to the early days of receiving an autism diagnosis for our son.
Kate is an amazing writer and captures the struggles and joys that come with being a special needs parent. If you already follow Kate @findingcoopersvoice you know about her autistic son Cooper and you’ve been given a quick glimpse of her beautiful family, but this book takes a deep dive into their story from the very beginning. We learn about how Kate met her husband, about the challenges they faced as they sought a diagnosis for their firstborn son and about how they healed as a family after hitting their lowest point. I shed so many tears reading these pages and found so many similarities between their story and our own with our nonverbal/autistic son Jack.
Kate is a mother I truly look up to, and her son Cooper is a child I always root for from afar. I’ve seen him achieve so many things with the support of his family and his growth goes to show that our children are lifelong learners and capable of so much more than we give them credit for. And seeing Cooper reach new milestones is a testament to how hard his family fights for him by advocating and educating others about autism.
April is autism appreciation month and it is the perfect time to pick up Forever Boy. You don’t have to be on the same journey as a parent to appreciate this story and the exceptional woman and child behind it. I’m truly blown away by Kate- she continues to amaze me with her strength and vulnerability. Thank you for this book Kate- this is a must read for all.
March 20, 2022
Kate Swenson is a phenomenal writer. I honestly have never read a book that I could relate to as much as I did Forever Boy. I laughed, I cried, and I relived through her words some of the most painful and beautiful times in my life as a mother to a special needs child.
This is a must read friends.
This is a must read friends.
December 12, 2021
I follow Kate’s page on Facebook and I’m so glad I was able to get an advanced copy of her book, thanks NetGalley! This was a great read, an important read. There are many people in our world who are like Cooper but they don’t have someone to fight with them and we need to hear more of their stories. #netgalleyarc
March 17, 2022
This book was great! It really helped me understand more about disabilities. I work in a Special Education classroom and I hope what I've read will help me be more understanding to students and their families.
August 4, 2022
Given how closely relatable I am to Kate’s story, I found this to be very difficult to rate and review. Kate’s blog ‘Finding Coopers Voice’, and now her memoir Forever Boy is in response to her being a mother to an autistic son. When my now ten year old was two I discovered her blog and found it helpful to know that I wasn’t alone.
Her memoir describes her emotions and feelings on the diagnosis process to the disappointment and huge levity that was placed on her discovering her child would have special needs.
She turned those frustrations and frights into being a strong supportive mother who wouldn’t change a thing about her son.
Personal Thoughts:
I’m very proud Kate has found peace, joy and hope for her son. Most families have no idea what it’s like to raise a child of special needs; however, it’s like anything else. You will happily look at someone else trainwreck and not even try to find any understanding or empathy.
This was where I felt Kate’s memoir lacked. You can remove the Autism and replace it with anything else and it would be the same. Every mother who doesn’t go the distance for their children should be ashamed of themselves.
Plus, can someone show me “severe autism” in the DSM so we can ALL fully comprehend the difference of diagnosing someone with “SEVERE AUTISM” compared to “NONSEVRRE Autism”?? That’s right…It DOES NOT Exist!! Also, we are in 2022, its about time even Mom’s with Autistic children…STOP saying “My child with Autism”!
What do you call a child diagnosed with Diabetes? Most say they are diabetic, otherwise, it is sooo demeaning to that individual being put a label saying I’m one with. . .
NOTE; I’m speaking to those who read this book, hoping to get a better understanding of Autism Spectrum Disorder. Please, the best place to find these answers is thru the #ActuallyAutistic community. We are the ones who have been born Autistic and provide you with the knowledge everyone needs. Even parents of Autistic kids.
Thank you @netgalley and @parkrow books for my gifted copy in exchange for my honest opinion.
Her memoir describes her emotions and feelings on the diagnosis process to the disappointment and huge levity that was placed on her discovering her child would have special needs.
She turned those frustrations and frights into being a strong supportive mother who wouldn’t change a thing about her son.
Personal Thoughts:
I’m very proud Kate has found peace, joy and hope for her son. Most families have no idea what it’s like to raise a child of special needs; however, it’s like anything else. You will happily look at someone else trainwreck and not even try to find any understanding or empathy.
This was where I felt Kate’s memoir lacked. You can remove the Autism and replace it with anything else and it would be the same. Every mother who doesn’t go the distance for their children should be ashamed of themselves.
Plus, can someone show me “severe autism” in the DSM so we can ALL fully comprehend the difference of diagnosing someone with “SEVERE AUTISM” compared to “NONSEVRRE Autism”?? That’s right…It DOES NOT Exist!! Also, we are in 2022, its about time even Mom’s with Autistic children…STOP saying “My child with Autism”!
What do you call a child diagnosed with Diabetes? Most say they are diabetic, otherwise, it is sooo demeaning to that individual being put a label saying I’m one with. . .
NOTE; I’m speaking to those who read this book, hoping to get a better understanding of Autism Spectrum Disorder. Please, the best place to find these answers is thru the #ActuallyAutistic community. We are the ones who have been born Autistic and provide you with the knowledge everyone needs. Even parents of Autistic kids.
Thank you @netgalley and @parkrow books for my gifted copy in exchange for my honest opinion.
March 4, 2022
As someone who has no personal experience with and limited knowledge of autism, I found this book to be informative, engaging and beautifully written. I feel it would appeal both to parents looking for guidance if this is something they are trying to navigate, as well as to those who would like to learn more about a subject they know little about. Many thanks to Harlequin Trade Publishing and NetGalley for an e-ARC of this book.
April 5, 2022
But the gift of acceptance was still elusive. Some days, even weeks, I would walk around thinking I had made it and then something would happen. [A relative], just four months younger, would sing me a song, and I would be leveled, blindsided by the grief that seemed to lie dormant and then resurfaced when I least expected it.
It’s hard to know where to start with this review. Forever Boy is about being the mother of an autistic child. The author writes early in the book, “Finding others who understand is life-changing.” She’s right. Her Facebook page was recommended to me a few months after my son’s diagnosis and I couldn’t even hazard a guess at how many times I’ve cried reading her posts. While all of our stories are different, there are a lot of common elements in how a parent processes this difference. I’ve felt doubly different, being neurodivergent myself, understanding my son in a less common way, but feeling too different than other autism moms who say things that unintentionally become personally insulting to me. Kate is the exception.
I became his person and he became mine.
But in time I learned not to let these people limit my child’s future. Professionals are here to help us and often they do. But they don’t have a crystal ball or the ability to predict a child’s future. Regardless of whether they end up being right or wrong, the one thing we can’t let them do is destroy our hope.
Like Kate, my son has apraxia and started talking after he got an Assistive Tech iPad. The inability to communicate seems ten times worse for autistic kids who process the world differently than NTs. Until they can tell us their basic needs, we have to guess. And the supposed experts don’t know much. It’s frustrating being neurodiverse and having to deal with medical professionals who act like authorities they aren’t. I’ve had my own diagnosis man-splained to me (and he got it wrong—shocker) by a doctor who should have known better. I’ve been told sensory processing disorder is a “theory” in response to me telling a self-described expert that I have it. And when my son got his diagnosis, I asked which therapies (e.g., music, play, speech) were shown to be the most effective in research and was told that those making the diagnosis couldn’t possibly have read all the literature to know that. I’m lucky to have an economist friend who reviewed the literature for me. Turns out it’s remarkably easy to make a recommendation, even if that rec is a subject of massive contention in the autism community. What’s difficult is determining why autism is more frequently diagnosed now than ever before and yet there’s still no great system for determining what sorts of supports any individual needs. It’s frustrating that we don’t get to hear more #actuallyautistic voices and instead have to listen to NT people basically guessing.
If I were to describe Cooper’s toddler years with one word, it would be lonely, a word that I didn’t know before having a baby could be associated with motherhood.
And opening up and being honest about our day-to-day struggles and my heartache didn’t come easily to me. So I had pulled away from most people. My friendships were suffering. I sugarcoated the challenges with family. I wanted to believe if I just kept going, and kept doing more for Cooper, that one day, he would get better. But it wasn’t happening. Autism had woven its way into every aspect of my life and had consumed me.
It’s still lonely, five years in. Your best friends may not know what to say and say nothing/ghost you. You feel ashamed or in my case ready to put anyone who says anything shitty about your kid on blast.
The world is such a cruel place to anyone who is different. And there is nothing I could do to change that.
Grief. It comes out of nowhere. I don’t think it ever goes away. It couldn’t possibly. But grief is love. Grief is help. Grief is acceptance. And I will carry the weight of grief with me forever.
It’s hard not to question why. Why the eff didn’t anyone notice this earlier? Why are there so many hoops to access early intervention and later supports. Why does it become another full-time job to navigate this system? And the worry: Should I be doing more? Is he happy?
I was a smart, strong, devoted, capable person and I could make this better. I had the power to make this better. And now that we had a diagnosis, it should be easy. Someone, I wasn’t sure who exactly, will tell me what to do. Like a prescription of sorts. Cooper wasn’t the first autistic kid diagnosed, nor would he be the last. I would just help him. Simple as that. By my calculations, he could be fine by kindergarten. That was the goal I set for myself.
I realized in that moment it takes a strong person to have a child in special education. There are no bells and no whistles. This was his first year in kindergarten and I wanted to celebrate it, but it felt like the public education system was telling me it wasn’t going to be special. It was going to be sad and dark. But the special education families, our stuff is always during the workday. Every meeting for an individualized education program or IEP, every conference, they are always during the week at a time that is difficult for any working parent.
Stepping off the path that every other child follows is crushing, and one of the hardest steps you’ll ever take as a special-needs parent.
There are some heartbreaking stories in this memoir about Cooper being left alone in a classroom while all the other kindergarteners are off at a Christmas party, put in the audience while the rest of the kids sang in a holiday carol-type situation and punished by taking away his recess.
As we walked out, the chatter of five year old voices leveled me. I cried the whole drive home again. It wasn’t supposed to be like this. This was supposed to be such a fun day.
Over the years I’ve talked about the linear nature of childhood development. Babies, infants, and toddlers typically learn skills and hit milestones on a prescribed timeline. It’s so predictable that you can buy books or subscribe to emails that will tell you what your child should be doing at any given time, give or take a few months. Most parents just have to follow that plan that the system lays out for them. But for Cooper and kids like him, there is no clear development plan.
When you have a child with special needs, you have to pick and choose what’s worth fighting for and focus your energies on that. Because if you try to fight everything, you will get burned out.
It’s hard to understand whether the focus on milestones really does jack s*%t. Seems like there is funding for putting up posters and freaking out parents, but no extra funding for support services for all the kids who need it. We paid out of pocket for a lot of services that would’ve taken at least a year to get through the bureaucracy. And we apparently live in a “good” state for disability. It is hard to think about all the kids who could communicate with an iPad if only they had the opportunity to have one at school.
Self-care. It’s a buzzword that makes most special-needs parents cringe. We don’t have time for extras in our world. Once I counted Cooper had on average seven additional appointments a week on top of school and being a kid. Think of a combination of speech therapy, occupational therapy, play therapy, feeding therapy, medical appointments, and appointments with his social worker. I also had another son to care for, and a house to manage, and a job to work. Self-care was not a priority.
I thought about autism. His autism. No one told me it would all be so challenging, that every day would feel like climbing a mountain. They also didn’t tell me it would be so emotional. That seeing other children his age speaking and playing would almost drop me to my knees. It felt as if the world had long passed us by and forgotten about my beautiful boy.
My six-year-old son had severe, nonverbal autism. It’s the kind of autism that no one talks about. The kind that isolates families. The kind that doesn’t sleep. The kind that forces a person to fight for every possible service and basic right. The kind that is completely and utterly depleting. The kind that feels hopeless at times..
My son’s autism is different than Cooper’s, not severe but not mild. Functioning labels are not only horrifying but simplified so much that they are useless. Please, if your friend tells you her kid has autism, please don’t ask if he’s high-functioning. Please don’t buy into this false idea that autism is screaming meltdowns or Rain Man. Please.
Take the help. Your life is difficult and it’s OK to acknowledge that it is hard. Take respite, take the offer from a friend to make dinner. Take financial help. There are no metals given out at the end of this life for the person who suffered the most.
Always try one more thing.
Celebrate everything. Every small, tiny, huge-to-you victory.
Speak your truth.
Choose joy.
The advice at the end was a nice bonus. She’s been through some things. Can’t think of another book on autism that mentions the literal sweat. This book was so hard and made me cry so much. But I’m glad I read it. You can’t hold your grief in forever. Sometimes that is the hardest thing. Those awful days where you feel all alone. Questioning how you will make it through. Hating that everyone calls you strong. Friends and family may fail you. Things look bleak. You feel your feelings and then you go give your kid a hug. And start all over again.
**I received a review copy of this book from Bookish First. (I also pre-ordered it months ago so I will have two copies on April 5.)**
It’s hard to know where to start with this review. Forever Boy is about being the mother of an autistic child. The author writes early in the book, “Finding others who understand is life-changing.” She’s right. Her Facebook page was recommended to me a few months after my son’s diagnosis and I couldn’t even hazard a guess at how many times I’ve cried reading her posts. While all of our stories are different, there are a lot of common elements in how a parent processes this difference. I’ve felt doubly different, being neurodivergent myself, understanding my son in a less common way, but feeling too different than other autism moms who say things that unintentionally become personally insulting to me. Kate is the exception.
I became his person and he became mine.
But in time I learned not to let these people limit my child’s future. Professionals are here to help us and often they do. But they don’t have a crystal ball or the ability to predict a child’s future. Regardless of whether they end up being right or wrong, the one thing we can’t let them do is destroy our hope.
Like Kate, my son has apraxia and started talking after he got an Assistive Tech iPad. The inability to communicate seems ten times worse for autistic kids who process the world differently than NTs. Until they can tell us their basic needs, we have to guess. And the supposed experts don’t know much. It’s frustrating being neurodiverse and having to deal with medical professionals who act like authorities they aren’t. I’ve had my own diagnosis man-splained to me (and he got it wrong—shocker) by a doctor who should have known better. I’ve been told sensory processing disorder is a “theory” in response to me telling a self-described expert that I have it. And when my son got his diagnosis, I asked which therapies (e.g., music, play, speech) were shown to be the most effective in research and was told that those making the diagnosis couldn’t possibly have read all the literature to know that. I’m lucky to have an economist friend who reviewed the literature for me. Turns out it’s remarkably easy to make a recommendation, even if that rec is a subject of massive contention in the autism community. What’s difficult is determining why autism is more frequently diagnosed now than ever before and yet there’s still no great system for determining what sorts of supports any individual needs. It’s frustrating that we don’t get to hear more #actuallyautistic voices and instead have to listen to NT people basically guessing.
If I were to describe Cooper’s toddler years with one word, it would be lonely, a word that I didn’t know before having a baby could be associated with motherhood.
And opening up and being honest about our day-to-day struggles and my heartache didn’t come easily to me. So I had pulled away from most people. My friendships were suffering. I sugarcoated the challenges with family. I wanted to believe if I just kept going, and kept doing more for Cooper, that one day, he would get better. But it wasn’t happening. Autism had woven its way into every aspect of my life and had consumed me.
It’s still lonely, five years in. Your best friends may not know what to say and say nothing/ghost you. You feel ashamed or in my case ready to put anyone who says anything shitty about your kid on blast.
The world is such a cruel place to anyone who is different. And there is nothing I could do to change that.
Grief. It comes out of nowhere. I don’t think it ever goes away. It couldn’t possibly. But grief is love. Grief is help. Grief is acceptance. And I will carry the weight of grief with me forever.
It’s hard not to question why. Why the eff didn’t anyone notice this earlier? Why are there so many hoops to access early intervention and later supports. Why does it become another full-time job to navigate this system? And the worry: Should I be doing more? Is he happy?
I was a smart, strong, devoted, capable person and I could make this better. I had the power to make this better. And now that we had a diagnosis, it should be easy. Someone, I wasn’t sure who exactly, will tell me what to do. Like a prescription of sorts. Cooper wasn’t the first autistic kid diagnosed, nor would he be the last. I would just help him. Simple as that. By my calculations, he could be fine by kindergarten. That was the goal I set for myself.
I realized in that moment it takes a strong person to have a child in special education. There are no bells and no whistles. This was his first year in kindergarten and I wanted to celebrate it, but it felt like the public education system was telling me it wasn’t going to be special. It was going to be sad and dark. But the special education families, our stuff is always during the workday. Every meeting for an individualized education program or IEP, every conference, they are always during the week at a time that is difficult for any working parent.
Stepping off the path that every other child follows is crushing, and one of the hardest steps you’ll ever take as a special-needs parent.
There are some heartbreaking stories in this memoir about Cooper being left alone in a classroom while all the other kindergarteners are off at a Christmas party, put in the audience while the rest of the kids sang in a holiday carol-type situation and punished by taking away his recess.
As we walked out, the chatter of five year old voices leveled me. I cried the whole drive home again. It wasn’t supposed to be like this. This was supposed to be such a fun day.
Over the years I’ve talked about the linear nature of childhood development. Babies, infants, and toddlers typically learn skills and hit milestones on a prescribed timeline. It’s so predictable that you can buy books or subscribe to emails that will tell you what your child should be doing at any given time, give or take a few months. Most parents just have to follow that plan that the system lays out for them. But for Cooper and kids like him, there is no clear development plan.
When you have a child with special needs, you have to pick and choose what’s worth fighting for and focus your energies on that. Because if you try to fight everything, you will get burned out.
It’s hard to understand whether the focus on milestones really does jack s*%t. Seems like there is funding for putting up posters and freaking out parents, but no extra funding for support services for all the kids who need it. We paid out of pocket for a lot of services that would’ve taken at least a year to get through the bureaucracy. And we apparently live in a “good” state for disability. It is hard to think about all the kids who could communicate with an iPad if only they had the opportunity to have one at school.
Self-care. It’s a buzzword that makes most special-needs parents cringe. We don’t have time for extras in our world. Once I counted Cooper had on average seven additional appointments a week on top of school and being a kid. Think of a combination of speech therapy, occupational therapy, play therapy, feeding therapy, medical appointments, and appointments with his social worker. I also had another son to care for, and a house to manage, and a job to work. Self-care was not a priority.
I thought about autism. His autism. No one told me it would all be so challenging, that every day would feel like climbing a mountain. They also didn’t tell me it would be so emotional. That seeing other children his age speaking and playing would almost drop me to my knees. It felt as if the world had long passed us by and forgotten about my beautiful boy.
My six-year-old son had severe, nonverbal autism. It’s the kind of autism that no one talks about. The kind that isolates families. The kind that doesn’t sleep. The kind that forces a person to fight for every possible service and basic right. The kind that is completely and utterly depleting. The kind that feels hopeless at times..
My son’s autism is different than Cooper’s, not severe but not mild. Functioning labels are not only horrifying but simplified so much that they are useless. Please, if your friend tells you her kid has autism, please don’t ask if he’s high-functioning. Please don’t buy into this false idea that autism is screaming meltdowns or Rain Man. Please.
Take the help. Your life is difficult and it’s OK to acknowledge that it is hard. Take respite, take the offer from a friend to make dinner. Take financial help. There are no metals given out at the end of this life for the person who suffered the most.
Always try one more thing.
Celebrate everything. Every small, tiny, huge-to-you victory.
Speak your truth.
Choose joy.
The advice at the end was a nice bonus. She’s been through some things. Can’t think of another book on autism that mentions the literal sweat. This book was so hard and made me cry so much. But I’m glad I read it. You can’t hold your grief in forever. Sometimes that is the hardest thing. Those awful days where you feel all alone. Questioning how you will make it through. Hating that everyone calls you strong. Friends and family may fail you. Things look bleak. You feel your feelings and then you go give your kid a hug. And start all over again.
**I received a review copy of this book from Bookish First. (I also pre-ordered it months ago so I will have two copies on April 5.)**
April 4, 2022
This is a poignant look at a mother’s love for her special needs child who has non-verbal autism. The author was very honest in portraying the challenges that she faced, including problems with going out in public or to any crowded space. Her descriptions of Cooper’s meltdowns were vivid and heart-tugging. With a sincere desire to tell others about her journey down this difficult road, the author wrote without holding back any punches. She was honest about her marital difficulties and her trouble relating to other parents who did not understand that her greatest desire was to see Cooper be all that he could be. Beginning with a normal pregnancy and describing the birth of little Cooper, Kate Swenson gives detailed insight into her path into the unknown. After all, no one expects to have a special needs child and her innate desire to be a mother with a child who could relate to other children was understandable as well as heartbreaking. Ms. Swenson describes her journey from denial to acceptance in a way that was realistic and forthright, compelling me to think about the repercussions that come in waves once a child is diagnosed with ASD. As the grandparent of a non-verbal autistic granddaughter, I could relate to many scenes that she was describing, most notably the ones in which Cooper was frustrated and withdrew into the world of his screen. This was a book that was hard to read at times because of my own experiences, but it is also a story that needs to be told and shared so that other parents of these very lovable children can feel the hope that comes from its pages. There were a lot of “aha” moments as I read and discovered new methods of dealing with ASD by the trial and error that the author and Cooper had to endure. I thoroughly enjoyed reading the perspective of the author in her dedicated quest on Cooper’s behalf. Teachers, parents and even siblings of children diagnosed with ASD should read this book and take to heart the lessons that the author learned. There is hope after the diagnosis, not for normal, but for a new normal and all kinds of love that come from the heart of a special needs child.
Disclaimer
Disclosure of Material Connection: I won a copy of this book from Bookish First. I was not required to write a positive review. All opinions expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255, “Guides Concerning the Use of Testimonials and Endorsements in Advertising.”
Disclaimer
Disclosure of Material Connection: I won a copy of this book from Bookish First. I was not required to write a positive review. All opinions expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255, “Guides Concerning the Use of Testimonials and Endorsements in Advertising.”
November 17, 2021
Fantastic first novel. Great representation of what it can be like living in a house with a child on the spectrum. Kate opened her heart and shared her life, her family and her son with us all.
February 13, 2023
Autism told by a mother who experiences it each and every day with her wonderful son, Cooper. Forever Boy is terrific!! I admit I know very little about autism and this book opened my eyes! Kate is a great author and this book grabbed me from the very first page. Highly recommend.
March 18, 2022
Thank you NetGalley for this ARC!! Beautiful story of choosing and find joy and the growth of a family. Highly recommended anyone needing support or trying to understand a family or child w a disability.
March 29, 2022
If you want a better understanding of autism, I would highly recommend this book. Five our of five stars. And here's why...
As a parent of a son with autism, I found Kate's story real. Really real. It is peppered with humor and truth. I laughed out loud. I read in shock. I cried tears for her son, my son, her family, and ours. But most of all, I love that she wrapped it in hope.
Our family's autism journey is very similar, yet very different. But "Forever Boy" made me feel seen, understood, and not alone on our journey.
Parents of children with autism can read this book and be seen. Kate sits with you. You are not alone.
Teachers, family members, friends, caregivers, neighbors...um, anyone can read this book and have a better understanding of what autism can be like for parents, siblings, and families. If you think you don't know anyone with autism, you are probably wrong and you are missing out on a beautiful gift.
As a parent of a son with autism, I found Kate's story real. Really real. It is peppered with humor and truth. I laughed out loud. I read in shock. I cried tears for her son, my son, her family, and ours. But most of all, I love that she wrapped it in hope.
Our family's autism journey is very similar, yet very different. But "Forever Boy" made me feel seen, understood, and not alone on our journey.
Parents of children with autism can read this book and be seen. Kate sits with you. You are not alone.
Teachers, family members, friends, caregivers, neighbors...um, anyone can read this book and have a better understanding of what autism can be like for parents, siblings, and families. If you think you don't know anyone with autism, you are probably wrong and you are missing out on a beautiful gift.
November 17, 2021
AMAZING. This book captured what it is like living with a child on the spectrum perfectly. My son is on the spectrum, verbal, HF but has so many of the same qualities as Cooper. We went through a stage where he would hit me multiple times a day. People who don't live it just don't understand. Kate did such a fantastic job sharing Cooper's and her family's story. I hope people will read it and learn and become more aware. Thank you for sharing your story. #findingcoopersvoice
April 24, 2023
This is my world too. It's like I wrote this book. But didn't, since many people knee-deep in the severe autism world, don't have the time to catch their breath or close the bathroom door for 5 minutes when they are using it. Never mind having the luxury of time to sit down and think in peace and quiet in their home (during a pandemic!), without interruptions, and write a book about being a parent to a severely autistic child.
How many mother's in the autism world really have such a luxury to not have to sacrifice their needs, dreams or goals like this??? I don't see many hands being raised in the room, since their hands are too busy wiping up constant spills on the floor, changing diapers (for kids much too old to be in diapers according to our society's "norms"), or keeping their children safe when they do not understand the concept of personal harm or pain.
Yes, being a parent involves sacrifice. No one would dispute that. However, when you are a parent to a child with severely autism, the sacrifice is immensely magnified and rarely (ie, never) includes time for mom's weekends away once per month as Kate writes about that she had the luxury to enjoy in the earlier years with Cooper. That's basically unheard of when one has "typical" kids, unless you're living in a fantasy world!
Most mom's in the moderate-severe autism world are typically just too exhausted, sleep-deprived and financially broke from having to give up their careers, overwhelmed from all the constant appointments and school meetings, and isolated and alone, to have the mental brain capacity to plan something like a weekend away. Unless they have help - like Kate does. Which she had and continues to have, and LOTS and LOTS of it.
So good for her, for having a loving and supportive husband (it's too bad she doesn't realize how important he is and seems to put her own needs and wants first all the time), a career which allowed her flexibility and that she didn't have to sacrifice, and an extended family there to support her every step of the way in the autism world. Would she be where she is today without ALL that love and support? Without parents watching her kids on weekends? If she had to sacrifice any of of these things she seems to take for granted that allow her to be doing what she does - her career (which helped her with the book connections) - a partner - her dreams - her in-laws and parents who help immensely by watching her kids ... would she be on the falsely inflated ride she's on today?
Because the reality is...the autism world for most is NOTHING like her fairy tale world. Sadly, she thinks she's giving people hope, when all she's doing is giving them false ideas of what life is like with a child who has severe autism.
And come on now, how many spouses would "forgive" their partner for cheating, like hers did? And then have more kids with them because SHE wanted more kids? Doesn't HE have a backbone? What will those kids think when they are older and read about it in this book - that daddy was ok with mommy sleeping with some other guy while they were still married, and that's all ok because they were "separated" at the time? Nice life lesson there for the future generation.
I struggle to follow the crowd and be on the cheering squad for someone who now tries to be a martyr and is looking for a shining moment at the expense of her child. No money is worth sharing such private details about my dear, precious child, who also happens to have autism like Cooper, with the world. It's just too crazy out there. And my child's right to privacy isn't for sale, no matter if the story could garner a short-lived high ranking on Amazon. My children will always know, without a doubt, I always did everything to protect them all - equally.
When the author started her journey with autism and Cooper, she really struggled, as we all do when we are suddenly thrown head first into the raging tidal waves better known as autism (and shared a lot of private things about Cooper with the world on FB).
Most families of children with autism, or parents of children with cancer, or diabetes, or CP, or CF, or you name it (here's a news flash for you... there are lots of terrible things out there our kids suffer through besides Autism/ASD and that are much worse and more painful for both parents and child to go through than ASD - so try opening your eyes sometime) also really struggle and need an outlet to vent and long for a support network. But the difference is, most of these parents are adult enough to know better than to do it publicly at the expense of their children!
It's ironic, since she's all high and mighty advocating for autism and disability rights. Yet she seems to not be concerned in the least for her own eldest son's right to privacy - like she is for her other 3 kids who can speak for themselves in life. Ironic, no?
Parents and guardians of autistic children need to do better than this for our children. Is it really that good of an idea for the world to know where our autistic children go to school, when they have medical appointments and where those are, or where they go to watch their siblings play sports? Do better than this if your child is autistic - your children need you to!
Lastly, has anyone else wondered, what happens when Cooper is a grown man and asks her why she shared all these intimate deals of HIS life with the world? What will her answer be? Will the truth be anywhere in her answer - that it's because autism sells, and his own mother sold him out to the world For what...Facebook followers, a book and a few bucks?
If she wrote a book about any of her other 3 kids, I can guarantee it wouldn't sell like one that has the word "autism" in the title. She won't write a book about any of her other 3 kids, by the way, because they won't sell. No money grabbing magnets there, since they are typical kids. So in return for being typical, those 3 kids get to somewhat have their privacy in life (minus Sawyer, who now has the private letter that she wrote him in the book for ALL to see - nice job ruining his privacy there too) and not have their early year bowel movements and moments of frustration/meltdowns shared with the world - unlike poor Cooper. Those cringe worthy early posts that gained her followers, clicks and likes, and cost Cooper so much, left bad tastes in many parent's of autistic children mouths, that are hard to forget.
Do better than wanting a pat on the back from the world, and strangers cheering and clapping for you wherever you go, if you happen to be the parent of a child(ren) who happen to also be severely autistic. Our children are watching, listening and learning from you, and need you to! And for heaven's sake - don't teach children that adultery is to be accepted and tolerated - and then write about it in your book!
How many mother's in the autism world really have such a luxury to not have to sacrifice their needs, dreams or goals like this??? I don't see many hands being raised in the room, since their hands are too busy wiping up constant spills on the floor, changing diapers (for kids much too old to be in diapers according to our society's "norms"), or keeping their children safe when they do not understand the concept of personal harm or pain.
Yes, being a parent involves sacrifice. No one would dispute that. However, when you are a parent to a child with severely autism, the sacrifice is immensely magnified and rarely (ie, never) includes time for mom's weekends away once per month as Kate writes about that she had the luxury to enjoy in the earlier years with Cooper. That's basically unheard of when one has "typical" kids, unless you're living in a fantasy world!
Most mom's in the moderate-severe autism world are typically just too exhausted, sleep-deprived and financially broke from having to give up their careers, overwhelmed from all the constant appointments and school meetings, and isolated and alone, to have the mental brain capacity to plan something like a weekend away. Unless they have help - like Kate does. Which she had and continues to have, and LOTS and LOTS of it.
So good for her, for having a loving and supportive husband (it's too bad she doesn't realize how important he is and seems to put her own needs and wants first all the time), a career which allowed her flexibility and that she didn't have to sacrifice, and an extended family there to support her every step of the way in the autism world. Would she be where she is today without ALL that love and support? Without parents watching her kids on weekends? If she had to sacrifice any of of these things she seems to take for granted that allow her to be doing what she does - her career (which helped her with the book connections) - a partner - her dreams - her in-laws and parents who help immensely by watching her kids ... would she be on the falsely inflated ride she's on today?
Because the reality is...the autism world for most is NOTHING like her fairy tale world. Sadly, she thinks she's giving people hope, when all she's doing is giving them false ideas of what life is like with a child who has severe autism.
And come on now, how many spouses would "forgive" their partner for cheating, like hers did? And then have more kids with them because SHE wanted more kids? Doesn't HE have a backbone? What will those kids think when they are older and read about it in this book - that daddy was ok with mommy sleeping with some other guy while they were still married, and that's all ok because they were "separated" at the time? Nice life lesson there for the future generation.
I struggle to follow the crowd and be on the cheering squad for someone who now tries to be a martyr and is looking for a shining moment at the expense of her child. No money is worth sharing such private details about my dear, precious child, who also happens to have autism like Cooper, with the world. It's just too crazy out there. And my child's right to privacy isn't for sale, no matter if the story could garner a short-lived high ranking on Amazon. My children will always know, without a doubt, I always did everything to protect them all - equally.
When the author started her journey with autism and Cooper, she really struggled, as we all do when we are suddenly thrown head first into the raging tidal waves better known as autism (and shared a lot of private things about Cooper with the world on FB).
Most families of children with autism, or parents of children with cancer, or diabetes, or CP, or CF, or you name it (here's a news flash for you... there are lots of terrible things out there our kids suffer through besides Autism/ASD and that are much worse and more painful for both parents and child to go through than ASD - so try opening your eyes sometime) also really struggle and need an outlet to vent and long for a support network. But the difference is, most of these parents are adult enough to know better than to do it publicly at the expense of their children!
It's ironic, since she's all high and mighty advocating for autism and disability rights. Yet she seems to not be concerned in the least for her own eldest son's right to privacy - like she is for her other 3 kids who can speak for themselves in life. Ironic, no?
Parents and guardians of autistic children need to do better than this for our children. Is it really that good of an idea for the world to know where our autistic children go to school, when they have medical appointments and where those are, or where they go to watch their siblings play sports? Do better than this if your child is autistic - your children need you to!
Lastly, has anyone else wondered, what happens when Cooper is a grown man and asks her why she shared all these intimate deals of HIS life with the world? What will her answer be? Will the truth be anywhere in her answer - that it's because autism sells, and his own mother sold him out to the world For what...Facebook followers, a book and a few bucks?
If she wrote a book about any of her other 3 kids, I can guarantee it wouldn't sell like one that has the word "autism" in the title. She won't write a book about any of her other 3 kids, by the way, because they won't sell. No money grabbing magnets there, since they are typical kids. So in return for being typical, those 3 kids get to somewhat have their privacy in life (minus Sawyer, who now has the private letter that she wrote him in the book for ALL to see - nice job ruining his privacy there too) and not have their early year bowel movements and moments of frustration/meltdowns shared with the world - unlike poor Cooper. Those cringe worthy early posts that gained her followers, clicks and likes, and cost Cooper so much, left bad tastes in many parent's of autistic children mouths, that are hard to forget.
Do better than wanting a pat on the back from the world, and strangers cheering and clapping for you wherever you go, if you happen to be the parent of a child(ren) who happen to also be severely autistic. Our children are watching, listening and learning from you, and need you to! And for heaven's sake - don't teach children that adultery is to be accepted and tolerated - and then write about it in your book!
March 20, 2022
This book is just what I needed. A story of a mom’s journey and a family healing through an autism diagnosis. I laughed, I cried, and I felt every injustice. In the end you see the beauty that is special needs parenting. This book is great for special needs parents, caregivers, teachers, therapists and anyone who would like to learn more about Autism.
March 20, 2022
This book is wonderful I laughed and I cried. It's a story of hope and never giving up. Pick up a copy you won't regret it.
March 29, 2022
I was lucky enough to receive an advance copy of this book. Kate Swenson is an amazingly talented writer. I’ve followed her and her family for years through her blog and social media pages. Her wit and wisdom got me through some of our family’s hardest moments during the early days of my son’s autism diagnosis. This book is truly a gift. There is so much valuable information and insight in it— especially for those with newly diagnosed children or loved ones.
April 4, 2022
Thanks to BookishFirst and Park Row for a gifted copy of this book.
Throughout Forever Boy, Kate Swenson tells readers about the journey her family has taken through the years with her oldest child, who has autism and is nonverbal. Kate's journey hasn't been linear and it's never been easy- from uprooting her family and moving to another city to find better assistance programs to marital issues and a host of other struggles. One thing that remains clear throughout the story is her love for her family. If there's one word to describe her as portrayed in her book, Kate is relentless- a constant pursuer of the help her child or family needs, and entirely honest about the missteps and feelings she's had while navigating a complicated system. As I was unfamiliar with Kate and her blog, I don't know how much of this book was recycled content and what the reading experience would be for those who are already followers.
Throughout Forever Boy, Kate Swenson tells readers about the journey her family has taken through the years with her oldest child, who has autism and is nonverbal. Kate's journey hasn't been linear and it's never been easy- from uprooting her family and moving to another city to find better assistance programs to marital issues and a host of other struggles. One thing that remains clear throughout the story is her love for her family. If there's one word to describe her as portrayed in her book, Kate is relentless- a constant pursuer of the help her child or family needs, and entirely honest about the missteps and feelings she's had while navigating a complicated system. As I was unfamiliar with Kate and her blog, I don't know how much of this book was recycled content and what the reading experience would be for those who are already followers.
April 4, 2022
Odds are good you know someone with autism, or someone who has a loved on with autism. This book is one mother's story. It's a memoir that takes the reader from pregnancy to birth to diagnosis and beyond. Swenson is open and raw in sharing her story, the highs and the lows. The reader will laugh and cry along with the author, and they'll also come to understand a bit more about what it's like when someone you love is diagnosed with autism. I'm a former special education teacher, and I believe this would be a beneficial read for anyone, but especially for teachers, speech pathologists, etc (those who work with children with autism). It's also beneficial for other parents, as it will remind them they're not alone on their journey. The book is written in a way that is relatable and easy to understand.
Disclaimer: I received a complimentary copy, but I wasn't required to leave a positive review.
Disclaimer: I received a complimentary copy, but I wasn't required to leave a positive review.
April 1, 2022
A wonderfully written memoir! It is look inside their family, the raw truth of what many families go through and how tough and isolating it can be while raising a child with Autism. It is a great read and would be wonderful for families, friends and teachers to see a side that lots of families rarely talk about!
March 22, 2022
I was able to read an advanced copy prior to the release date and I am so thankful! This book is nothing short of amazing!
Kate writes about her journey with autism, from a parents perspective, and it paints a picture for the reader as to what families go through when someone they love is diagnosed with autism. You will laugh, you will cry, but most of all, you will understand, even just a little bit more, what this life is like from a parent's view. As a fellow parent to a child with special needs, I found this book very relatable and honest. Kate writes so eloquently and the book is so easy to read. I highly recommend!!!
Kate writes about her journey with autism, from a parents perspective, and it paints a picture for the reader as to what families go through when someone they love is diagnosed with autism. You will laugh, you will cry, but most of all, you will understand, even just a little bit more, what this life is like from a parent's view. As a fellow parent to a child with special needs, I found this book very relatable and honest. Kate writes so eloquently and the book is so easy to read. I highly recommend!!!
March 22, 2022
I was lucky enough to get an advanced copy of this book. It is so good. I could not put it down. While it is about Kate’s journey with her son Cooper and autism it is a book of hope and joy and acceptance. I could actually feel Kate going from despair and grief to finding the joy . The love is always there . The frustration at trying to find services and the appalling lack of help from some professionals is disturbing and yet Kate and her hubby persevered. A book written from the heart and a must read for anyone. I myself do not have anyone I’m close to with autism and yet this book has made me aware of how I can help even when I’m just out and about! A joy to read!
April 21, 2022
I received a free ARC in exchange for an honest review.
Two and a half stars.
The first of half of Swenson's memoir of parenting a child who is severely autistic is told in a linear and straight-forward manner. It was interesting, if dry at points. As the book progresses, Swenson becomes very repetitive and loses focus on her target audience. At times, she wants those unfamiliar with autism to understand her "secret world." I've been extremely familiar with autism for decades, and while Swenson wasn't familiar with autism until after 2011, when her son was born, I think she does not give enough credit to this portion of her audience. Given the extremely high rate of diagnosis today (some estimates as high as 1 in 49) many, maybe most, people have at least a passing familiarity with autism. At other points in the memoir, Swenson addresses parents of the newly diagnosed child and shares advice and encouragement.
The second half of the memoir feels poorly edited - I'm not sure if Swenson copied blog posts for these chapters or rushed through them - she repeats her thoughts and philosophies, defines the same terms multiple times, and no longer follows a linear progression. She sweeps past major milestone moments and contradicts herself at times. As interested as I am in autism, and her son's story is compelling, I lost interest as the memoir progressed. I don't follow her blog so I can't say if this will be a good read for that audience or not, but in general this memoir lacks a clear focus. Swenson is most likely used to writing short-form articles/blogs, and I think a professional co-author would have been really beneficial here.
Two and a half stars.
The first of half of Swenson's memoir of parenting a child who is severely autistic is told in a linear and straight-forward manner. It was interesting, if dry at points. As the book progresses, Swenson becomes very repetitive and loses focus on her target audience. At times, she wants those unfamiliar with autism to understand her "secret world." I've been extremely familiar with autism for decades, and while Swenson wasn't familiar with autism until after 2011, when her son was born, I think she does not give enough credit to this portion of her audience. Given the extremely high rate of diagnosis today (some estimates as high as 1 in 49) many, maybe most, people have at least a passing familiarity with autism. At other points in the memoir, Swenson addresses parents of the newly diagnosed child and shares advice and encouragement.
The second half of the memoir feels poorly edited - I'm not sure if Swenson copied blog posts for these chapters or rushed through them - she repeats her thoughts and philosophies, defines the same terms multiple times, and no longer follows a linear progression. She sweeps past major milestone moments and contradicts herself at times. As interested as I am in autism, and her son's story is compelling, I lost interest as the memoir progressed. I don't follow her blog so I can't say if this will be a good read for that audience or not, but in general this memoir lacks a clear focus. Swenson is most likely used to writing short-form articles/blogs, and I think a professional co-author would have been really beneficial here.
July 30, 2022
In Forever Boy, Kate Swenson eloquently takes us with her on her journey into a joyful life with her son Cooper. Cooper has autism. As a parent, Kate struggled to find the reality of who her son was and to not relinquish all the dreams she had for Cooper. Kate dealt with the heartbreak of not being able to communicate with Cooper and watching behaviors escalate, all the while grasping for any opportunity to turn Cooper's story around. Because Kate emerged into joy with the family intact that she dreamed of from early childhood, her message is meant for those who like her are isolated and feel no option but to believe the doomsday predictions for their child. Though I do not directly care for anyone on the autism spectrum my long running interest in the journey such families take was born in part because of my experience as a Pediatric nurse and due to my involvement with a close family member with a daughter with autism. I recommend this book as an excellent read for everyone because Kate's story grabs your heart and her desire to educate those of us on the sidelines is intense. Kate encourages me to reach out with a smile and a kind word and to set an example and interact with those whose behaviors we might not always understand. Whether you read Kate’s story because you are travelling the same path or for more insight into the journey, you will come away uplifted. I would like to say thank you to Net Galley and Park Row books for making this copy available for me to enjoy.
March 21, 2022
This book needs to be given to every parent whose child receives an Autism diagnosis. It’s an incredible reminder that you are not alone. Kate brings you into the incredible world of Cooper and teaches parents how to navigate the world of advocacy. You will not be disappointed when you read this book. You’ll laugh, you’ll cry, and you’ll close the book a better person for getting to know the world of Autism.
March 22, 2022
This is an amazing story of hope, struggles, sadness, acceptance and finding joy in the little things. Kate details how she was able to grieve and eventually find joy in all things autism. I do not have a child with special needs but this book is so relatable to all the struggles of motherhood and marriage! Kate beautifully detailed all the ups and downs of navigating the hard! This is a must read!
March 23, 2022
A true story of love, hope and joy
March 30, 2022
I’ve never related so closely to a book as this one. As a parent to 2 Autistic boys, I feel validated in all the emotions I have been feeling for 10 years. I’d recommend this to everyone, especially those personally affected by Autism.
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September 13, 2023I’m not able to get past the tragic happenstance early in the book. Trigger alert on steroids. Even though a few decades ago, nope. Can’t continue. Whew … within my own life suffered a horrific loss in similar fashion that lead to me being saved from death by moments. The author is able to have a baby. The details leading to this and following … ugh, my chest is tightening at the hint of taking me back to that experience.
Reason for sharing this bite, if you’ve gone through fertility or childbearing issues depending on what they were this could be a book to avoid or put down. And, try again. I did this a few times, but couldn’t get past the pain I’d thought I moved through and beyond. I was wrong. For this reason, DNF.
Bummed due to the person who recommended the book is friends with the author. And, my sister. Didn’t know my story.
If you’re child struggles neurodivergently, this could be a good fit.
Reason for sharing this bite, if you’ve gone through fertility or childbearing issues depending on what they were this could be a book to avoid or put down. And, try again. I did this a few times, but couldn’t get past the pain I’d thought I moved through and beyond. I was wrong. For this reason, DNF.
Bummed due to the person who recommended the book is friends with the author. And, my sister. Didn’t know my story.
If you’re child struggles neurodivergently, this could be a good fit.
April 5, 2022
I laughed, I cried, I said “yes!!!! exactly, someone gets it!” in my head over and over again.
This book is for anyone; the special needs mom, the caretakers, a teacher or para in a special education classroom, admin and gen ed teachers, family members, community members, any mom, any dad, any advocate - this book will touch each and every person who reads it in some way.
Kate shares her families story of finding the joy in the midst of despair and focusing on that joy each day. Kate’s story is not just about her son Cooper’s severe non-verbal Autism, but also a story of marriage, heartache, advocacy, family, joy. A beautifully written memoir of a Mom who fights each and every day for her beautiful boy and his non-verbal Autism, who despite having no physical words, his families journey to find those words and joy along with him will touch you to the core.
This book is for anyone; the special needs mom, the caretakers, a teacher or para in a special education classroom, admin and gen ed teachers, family members, community members, any mom, any dad, any advocate - this book will touch each and every person who reads it in some way.
Kate shares her families story of finding the joy in the midst of despair and focusing on that joy each day. Kate’s story is not just about her son Cooper’s severe non-verbal Autism, but also a story of marriage, heartache, advocacy, family, joy. A beautifully written memoir of a Mom who fights each and every day for her beautiful boy and his non-verbal Autism, who despite having no physical words, his families journey to find those words and joy along with him will touch you to the core.
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