Reviews
I Have Been Buried Under Years of Dust: A Memoir of Autism and Hope by Valerie Gilpeer, Emily Grodin
princesszinza's review
2.0
I read this book because of a recommendation from Amazon. I was happy to find it as a digital download from the library.
I started reading with great interest since Emily is around the same age as my daughter. Much of Valerie's beginning search was so familiar to me. The top doctors and treatments were the same I read about when my daughter was young. The difference is that I didn't have the means to seek out these doctors or treatments that Valerie was able to.
When my child was very young I tried doing the ABA program myself. I could not afford any help. I found it to be too structured and tedious for a small child. It almost felt cruel. The program didn't seem like it was working either. I felt guilty for giving up on it at the time. Now, I feel that it is aimed at making the child "normal", which is of course not possible or desirable. So I agree with Valerie about ABA but for different reasons.
Valerie also mentioned how isolating having a child with autism is. She said that family and friends tend to distance themselves. Her family became a singular unit dealing with the diagnosis. I have also found this to be true.
Valerie's insights about the early years of Emily's schooling also rang true to me. Yes, often times the more inclusive, kind kids are from lower means. Wealthy kids often behave in a more entitled, snarky way.
It's also true that mainstreaming is not always what it's made out to be to parents. It can be awesome with the right teacher, but sadly many teachers don't want to take on the added responsibility. It's better for the child to be with a teacher trained in autism who understands the child in a small classroom with trained aides for support, than having a child in a large mainstream classroom neglected in a seat in the back.
Every kid with autism is different and has their own needs. No school program is perfect. Most schools do try to place children in the best programs. My feeling is that if the parents are involved and caring, and explore the best options, things will work out.
Working out doesn't mean your child will be cured. There's no magic with developmental disabilities. Amazing improvement happens. My child made tremendous strides. Greater than anyone ever imagined. But there is no cure or magic.
This brings me to my concerns about this book. I believe in science. Science does not support Facilitated Communication. I've watched Sue Rubin's movie "Autism is a World". I read Carly Fleischman's father's book and seen her videos. I have not seen anything that convinces me of the merits of FC.
Valerie mentions her concerns and is up front about other people's doubts about FC. I appreciate her honesty in mentioning the controversy. I will not dismiss something that she believes helps Emily. At the same time I'd warn anyone who wishes to try FC to be very careful.
Not everyone is going to be a scholar or a poet. Love your child for who they are. Accept them for who they are. Being a parent is a gift.
I started reading with great interest since Emily is around the same age as my daughter. Much of Valerie's beginning search was so familiar to me. The top doctors and treatments were the same I read about when my daughter was young. The difference is that I didn't have the means to seek out these doctors or treatments that Valerie was able to.
When my child was very young I tried doing the ABA program myself. I could not afford any help. I found it to be too structured and tedious for a small child. It almost felt cruel. The program didn't seem like it was working either. I felt guilty for giving up on it at the time. Now, I feel that it is aimed at making the child "normal", which is of course not possible or desirable. So I agree with Valerie about ABA but for different reasons.
Valerie also mentioned how isolating having a child with autism is. She said that family and friends tend to distance themselves. Her family became a singular unit dealing with the diagnosis. I have also found this to be true.
Valerie's insights about the early years of Emily's schooling also rang true to me. Yes, often times the more inclusive, kind kids are from lower means. Wealthy kids often behave in a more entitled, snarky way.
It's also true that mainstreaming is not always what it's made out to be to parents. It can be awesome with the right teacher, but sadly many teachers don't want to take on the added responsibility. It's better for the child to be with a teacher trained in autism who understands the child in a small classroom with trained aides for support, than having a child in a large mainstream classroom neglected in a seat in the back.
Every kid with autism is different and has their own needs. No school program is perfect. Most schools do try to place children in the best programs. My feeling is that if the parents are involved and caring, and explore the best options, things will work out.
Working out doesn't mean your child will be cured. There's no magic with developmental disabilities. Amazing improvement happens. My child made tremendous strides. Greater than anyone ever imagined. But there is no cure or magic.
This brings me to my concerns about this book. I believe in science. Science does not support Facilitated Communication. I've watched Sue Rubin's movie "Autism is a World". I read Carly Fleischman's father's book and seen her videos. I have not seen anything that convinces me of the merits of FC.
Valerie mentions her concerns and is up front about other people's doubts about FC. I appreciate her honesty in mentioning the controversy. I will not dismiss something that she believes helps Emily. At the same time I'd warn anyone who wishes to try FC to be very careful.
Not everyone is going to be a scholar or a poet. Love your child for who they are. Accept them for who they are. Being a parent is a gift.
amysdenn's review
challenging
emotional
hopeful
reflective
medium-paced
4.0
A good double sided perspective of autism
amber72113's review
challenging
emotional
hopeful
informative
inspiring
reflective
sad
tense
medium-paced
3.5
sarlope12's review
3.0
I feel like I'm in a real pickle about this novel. On the one hand, this book was very informative. Almost everything in here was accessible to a person who might have no clue what autism is, or what treatments are available. On the other hand, it is so clear how narcissistic and damaging this book can be. If your child is autistic and you deny her the opportunity to begin communication in alternate ways because you're desperate to have your child communicate verbally, you are cruel. Emily could have begun using FC YEARS before she did. I believe it was close to a decade. That's a long time of no communication. All because Valerie was so focused on getting her to speak. It agonizes me. To me this is just as bad as families that are in denial about their children being deaf. Don't even get me started about Valerie's thoughts on finding out Emily was autistic. I don't know how Emily grew up in a clearly toxic environment with Valerie as her mother.
The main point that I would like to come across from this novel is that verbal communication is not the only form of communication. Emily's writing was fantastic and I wish Valerie had been left out of this novel altogether. Emily has a bright future if she chooses to write her own novels and I wish her nothing but success in her endeavors in that regard. Valerie should never write a novel again :)
The main point that I would like to come across from this novel is that verbal communication is not the only form of communication. Emily's writing was fantastic and I wish Valerie had been left out of this novel altogether. Emily has a bright future if she chooses to write her own novels and I wish her nothing but success in her endeavors in that regard. Valerie should never write a novel again :)
michmunchkin's review
2.0
I was conflicted as to my rating of this book.
In terms of the writing itself, it was an engaging and engrossing read. In that sense, I would rate it at five stars, no question - especially when it comes to Emily's portions of the book. They were amazing.
But as engaging as the book was, I have to admit that I found myself highly disliking Valerie. I'm reminded of the way I felt about Michael Schofield in his book "January First". In both cases you're reading a book written by a parent whose narcissism shines through on every page.
Valerie makes it sound as though she was the only one concerned about Emily's well-being, as though Emily didn't also have a father who wanted to do everything he could to help her. I got so very tired of reading about how Valerie had made a decision about Emily that Tom didn't initially support, only to have him tell her later that she was right and he should have listened to her all along.
The way she talked about the behavioural therapists in the beginning of the book drove me crazy too. I understand that every parent thinks their child is brilliant and beautiful and unique, but these therapists aren't there to coddle children - they're there to work with the child.
"We hated the constant collecting of data on Emily. The clinical ways the behaviourists worked with her made me feel as if Emily weren't a beautiful child, our precious daughter, but a horse to be broken."
Look, I don't have children, and as I've said, I understand that all parents think their children are the most special children on earth. But those therapists that Valerie felt so free to disparage weren't there to dote on Emily. They were there to work with her, to try to help her, to help her make as much progress as was possible. And yes, of course they were going to document whatever progress she made. The "data collection" that Valerie dislikes so much? Essential to working with any children (hello, has she never heard of progress reports or report cards?) but, I would imagine, even more crucial when one is working with children with different abilities. She's not the "precious daughter" of these professionals; of course they're not going to treat her that way.
It just seems to me that Valerie had no intention of working or cooperating with anyone whose sole intention wasn't to fawn all over Emily.
I am glad I read this book, and am amazed by Emily's writing. But I wish that I had been able to hear more of her voice - and much less the voice of her insufferable, self-centred mother. I don't know how in the world her husband has managed to stay with her, because honestly, she seemed to take every opportunity she could to disparage him.
In terms of the writing itself, it was an engaging and engrossing read. In that sense, I would rate it at five stars, no question - especially when it comes to Emily's portions of the book. They were amazing.
But as engaging as the book was, I have to admit that I found myself highly disliking Valerie. I'm reminded of the way I felt about Michael Schofield in his book "January First". In both cases you're reading a book written by a parent whose narcissism shines through on every page.
Valerie makes it sound as though she was the only one concerned about Emily's well-being, as though Emily didn't also have a father who wanted to do everything he could to help her. I got so very tired of reading about how Valerie had made a decision about Emily that Tom didn't initially support, only to have him tell her later that she was right and he should have listened to her all along.
The way she talked about the behavioural therapists in the beginning of the book drove me crazy too. I understand that every parent thinks their child is brilliant and beautiful and unique, but these therapists aren't there to coddle children - they're there to work with the child.
"We hated the constant collecting of data on Emily. The clinical ways the behaviourists worked with her made me feel as if Emily weren't a beautiful child, our precious daughter, but a horse to be broken."
Look, I don't have children, and as I've said, I understand that all parents think their children are the most special children on earth. But those therapists that Valerie felt so free to disparage weren't there to dote on Emily. They were there to work with her, to try to help her, to help her make as much progress as was possible. And yes, of course they were going to document whatever progress she made. The "data collection" that Valerie dislikes so much? Essential to working with any children (hello, has she never heard of progress reports or report cards?) but, I would imagine, even more crucial when one is working with children with different abilities. She's not the "precious daughter" of these professionals; of course they're not going to treat her that way.
It just seems to me that Valerie had no intention of working or cooperating with anyone whose sole intention wasn't to fawn all over Emily.
I am glad I read this book, and am amazed by Emily's writing. But I wish that I had been able to hear more of her voice - and much less the voice of her insufferable, self-centred mother. I don't know how in the world her husband has managed to stay with her, because honestly, she seemed to take every opportunity she could to disparage him.
cristinareads's review against another edition
4.0
*Thank you to Netgalley and the publisher for an egalley ARC out in April 2021.
The description of this story interested me right away. The journey Emily and her family went on and are still going through of navigating nonverbal autism was very compelling, and I am thankful for the opportunity to read it.
This is a memoir co-written by Emily’s mother and Emily who is nonverbal autistic. The main narrative is told by her mother, with insight and poetry throughout
by Emily. Emily’s poetry and writing was definitely was the highlight for me.
The overall story paints a picture of Emily’s journey of finding her voice and sharing her experience of the world. Through most of her childhood she is not able to communicate beyond simple answers to questions, though her parents believe there is more going on inside her than she can communicate. After trying many different therapies, through FC she has a breakthrough one day and Emily writes full sentences describing her thoughts and feelings for the first time.
I know there is a saying in the autistic community that says something like when you have met one autistic person you have met one autistic person. Each person’s experience with autism is unique. This is how I think of Emily’s story. It is not meant to say “follow this path” and other autistic people can be like me. Rather it tells a story that advocates for more options beyond speech therapy for nonverbal autistic children.
FC (Facilitated Communication) has been seen as illegitimate form of communication for autistic people, but Emily and her mother want to share their positive experience with it and advocate for all forms of AAC (Augmentative & Alternative Communication) to be a recognized option for nonverbal autistic people.
Emily’s poetry and insight to what it is like to navigate the world as autistic along with her mother’s narrative has given me a lot to think about as a teacher, mother, and human in this world we all share.
The description of this story interested me right away. The journey Emily and her family went on and are still going through of navigating nonverbal autism was very compelling, and I am thankful for the opportunity to read it.
This is a memoir co-written by Emily’s mother and Emily who is nonverbal autistic. The main narrative is told by her mother, with insight and poetry throughout
by Emily. Emily’s poetry and writing was definitely was the highlight for me.
The overall story paints a picture of Emily’s journey of finding her voice and sharing her experience of the world. Through most of her childhood she is not able to communicate beyond simple answers to questions, though her parents believe there is more going on inside her than she can communicate. After trying many different therapies, through FC she has a breakthrough one day and Emily writes full sentences describing her thoughts and feelings for the first time.
I know there is a saying in the autistic community that says something like when you have met one autistic person you have met one autistic person. Each person’s experience with autism is unique. This is how I think of Emily’s story. It is not meant to say “follow this path” and other autistic people can be like me. Rather it tells a story that advocates for more options beyond speech therapy for nonverbal autistic children.
FC (Facilitated Communication) has been seen as illegitimate form of communication for autistic people, but Emily and her mother want to share their positive experience with it and advocate for all forms of AAC (Augmentative & Alternative Communication) to be a recognized option for nonverbal autistic people.
Emily’s poetry and insight to what it is like to navigate the world as autistic along with her mother’s narrative has given me a lot to think about as a teacher, mother, and human in this world we all share.
omgxroxie's review
5.0
I have to give this memoir a lot of credit. I have been studying Early Childhood Education for a number of years, I’ve taken various courses on disabilities and inclusion, and I’ve worked with children with autism before. I am college educated in ECE. I’m not an expert by any means, but I consider myself well versed in knowledge of people with autism. And this book taught me so much that I’ve never heard of. I learned so much about facilitated communication. Of course I had heard of it, but I feel it’s not covered nearly enough because of the controversy behind it. Emily’s story was so extraordinary, I almost didn’t believe it until I kept reading. For her to just come out and start communicating eloquently and with so much artistic ability at age 25 amazed me. I was convinced by a simple statement from Emily’s mother, where she discussed how Emily didn’t do things until she was ready, because she was just that type of person. I am the exact same way. Neurotypical or not, we all are people with personality traits, so that made perfect sense to me. Emily communicated when she felt ready. I highly recommend this memoir to anyone who is interested in learning more about autism and facilitated communication. Emily’s story will truly change everything you thought you already knew.