Customer Reviews

Rachel in the World: A Memoir

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I so admire this book and author. There hasn't been enough written about the transition to adulthood for people with cognitive disabilities. Here we get an honest, incredibly well-told story of a complex, ever-shifting mother-daughter relationship. The book has room for ambivalence, contradiction, determination, despair--all of the things that make life, well, life. If, as the parent of a child with a disability, you find yourself stretching to the point of elasticity, giving even beyond the fact of total depletion, and then, the very next moment, wanting more for yourself, not to mention more FROM your child, this book is for you. It's lyrical candor will disarm you exactly as it provides the only solace that is credible.

I've long been a fan of Bernstein's work, from her novels to her scorchingly brave memoir about her sister's murder, Bereft. Rachel in the World shows the same kind of bravery. This is no treacly feel-good tome about what it is like to raise a special needs daughter and send her out in the world. Instead, Bernstein shows both her love and her irritation, and her anger at a system that doesn't exactly make it easy to do what is best for Rachel. Beautifully written and filled with photos that are like prose poems.

Once again Jane Bernstein has achieved a remarkable portrayal, adeptly balancing her intensely personal feelings with an objective view of Rachel, her mentally retarded daughter (a description Bernstein sometimes finds more appropriate than the more politically correct euphemism of "intellectually impaired"). The Rachel we met as a little girl in Loving Rachel, Bernstein's moving account of discovering her daughter's mental and physical liabilities, has grown into a young adult, craving freedom and independence in the "real world" beyond the safe haven her mother has spent years developing. Bernstein's experience of wading through the labyrinth of "the system" in order to achieve her goal of finding the right living situation for Rachel proves to be confounding and frustrating, and as social services cuts become more frequent, even scary. Add to that Rachel's own conflicted emotions, along with her constant chattering and insatiable demands, and it seems inevitable that Bernstein will succumb to the overwhelming pressures of her role as Rachel's protector and provider, while at the same time trying to maintain her own sanity. But in her own inimical fashion, and written with the honesty that she is famous for, Bernstein proves that she is up to the task, even if at times she doubts her own strength and fortitude. On the surface a story about a young woman facing a life she may not be ready for, Rachel in the World is really about the love of a mother for her daughter. And I can't wait for Rachel to grow older so Bernstein can write the next chapter in their lives.

I have to admit, I was expecting something a little different from this book. Jane does say in the introduction that this is Rachel's story, not hers. But what I loved most about LOVING RACHEL was Jane's perspective--her emotional journey throughout the process of Rachel's diagnosis. In this book, Jane is still the lens through which we see the story, but the focus is definitely on Rachel.

That said, this is a very well-written book, and I enjoyed reading about Rachel growing up. I also enjoyed getting to read more about Charlotte, Rachel's older sister. A good friend of mine has a little sister with special needs, and she also had to go through this--getting her sister ready to move out, to be "independent." While my friend's experiences were not exactly the same as Jane and Rachel's, there was an underlying foundation of struggles that they shared.

What really impacted me while I was reading was realizing just how constant the battles are for parents of kids with special needs. They don't ever get rest, because the system is constantly changing, which means they have to stay on top of it and make sure their child is getting the best possible care. By the end of the book, I had this mental image of Jane's family--as a boat, a ship, a great ark that is trying to weather a great storm. The boat makes it to shore, but definitely a bit battered.

On a personal note, it was interesting to realize that Jane wrote this book while she was my teacher. At some points I could map my relationship with her to the events that were happening in the story. She mentions once feeling like she is doing everything badly--parenting, teaching, writing, living. But I can say this with certainty: she was not teaching badly. She was, from the start, one of the professors that I most enjoyed and admired.

Overall a good read, and I am glad that they included pictures. I don't think this book has the universal appeal of LOVING RACHEL, but anyone who read that book will want to finish out the story with this one.

As the mother of a 34 year-old who has disabilities, I agree with other reviewers about the great need for personal books chronicling the transition from parenting "the cute little child" to the teenager and adult who may not be so cute, but still needs lots of assistance and problem-solving support from tired family and limited social programs. The author does a great job of illuminating that her year-after-year journey with Rachel was really a minute-by-minute process that involved the whole family. The book's honesty and lack of sentimentality are its greatest strengths, in my opinion. And I did find the end of the book so encouraging and uplifting. I appreciate the author's writing skills; every page moves the story along with creativity and care. Highly recommended. Mary Lee Moser, author, There and Back: A Journal Companion for Special Needs Parents

I can't say I felt uplifted after reading this memoir, and that is not the point. It's a book that badly needed to be written, about what happens when children with special needs grow up, stop being adorable and need to have a life in the world. Anyone can love almost any small child, regardless of how severe their needs are, but when that small child becomes a teenager, or a young adult, or middle aged, suddenly a lot of that love dries up. It's family who is left with the child's best interests at heart, and this book tells of how hard it was for a family to find the right place for Rachel---who talks non-stop about nothing that is actually going on, who has partial vision, who needs medication, who is unable to fix a meal or take an effective shower or dress properly. I of course thought often during my reading about my own daughter. She is 5 and is autistic. She is of course at this point beautiful, much loved by those who work with her, but already, she can wear us out. Sometimes I dread seeing her get bigger and older, get to the age where people are going to expect her to answer questions, to not cry for hours, to be able to take care of herself. I have the hope every parent has, that these things will come with time, but there is a part of me that does know that's unlikely. However harsh the word sounds, she is retarded, and she will probably stay that way. And the world is not a kind place for children like her when they are no longer children. I am encouraged by the ending of the book, the perfect setting found for Rachel, that is of course not perfect, but I can see how it would feel like it was. I hope the rise in autism will make it necessary for the government to address what exactly will happen to autistic adults when the time for miracles in their life has passed, and they just need to be able to live a decent life. I thank the author for her book.

This book is a gift to the world, especially for those in this world who are doing their best to love and care for and raise a child with "special needs." Jane Bernstein brings her considerable gifts as a writer to the task of sharing her own immense challenges raising her developmentally disabled daughter Rachel. We follow Bernstein's successes and struggles -- at home and within the beaurocratic maze -- from the time Rachel is five until she's in her early twenties, ready to go out "in the world." In the end, Bernstein finds a place for her daughter, and she concludes her beautifully written account on the wings of hope: "My daughter, my Rachel, funny, unruly, mysterious -- she's all grown up now, living and working on her own. As for me, I'm like a giant, unseen bird, circling above her..." I recommend this book to every caring parent -- no, every caring person. -- Bonnie Lee Black, author of Somewhere Child and How to Cook a Crocodile

Again, Jane Berstein has done an incredible job describing the challenges of raising a child with a disability and the struggles of transitioning that child to the adult world. The roadblocks she faced and overcame demonstrate her true love for her daughter and her determination to give Rachel that best possible life despite her disabilities. Thank you Jane for chronicling these challenges so that others may learn from your experience. I have recommended this book to colleagues and other families.