Out of My Mind

I work as a CNA at a facility for long term acute care of people with traumatic brain and spinal cord injuries. This book was left by the family in the room of a younger patient (teenager) who had to be supervised 1-on-1 at all times due to his injury. I have since heavily suggested it to many of my coworkers in healthcare and child care. It is a very simple read, but very moving and thought provoking even so. "Out of My Mind" is the story of a little girl who just wants to be able to be heard and seen. She has spastic quadriplegia and cerebral palsy, but a photographic memory. She remembers everything that she has ever heard or seen, but is able to say nothing. I would ask you to take a moment and contemplate what it would be like to be in that position. She is treated as a baby, an invalid, someone stupid and incompetent because she looses control of her muscles and can't behave as a "normal" child. Can you imagine having above average intelligence and memory, but everyone treats you as if you have the mental capacity of an 18 month old... and no way to correct them? This is the story of how she was able to develop the skills and be given the tools to make her voice heard. It is also a coming-of-age story. It's the story of her commentary on how people treat her, and her experiences being in "special" education classes, how she is able to see the beauty and wisdom in her classmates that the rest of the school has "thrown away" in the dingiest classrooms in the corner of the school. It's also the story of a 5th grade little girl's desire to be accepted just as she is. As someone who commonly works with TBIs, it's also a reminder of the proverbial "don't judge a book by its cover". I may be working with someone who is completely unresponsive, but it's impossible to know how much is actually being understood and comprehended. I have had coworkers who either treat unresponsive patients like nothing more than dolls or like idiots, and it always offends me. While this is a young adult book, it is definitely a book also important for adults to read. I would read this with an elementary-aged school child, but I would also read it with an adult group. It's a fast read - written as though by a very intelligent 5th grader - but the message is much more complex and powerful.

I am in awe. I found this book on Amazon for my ten year old son, who has Aspergers. He is having a particularly hard time in school these days, and I picked this book because it sounded like a book that I thought he might be able to relate to. He needed a book for a book report. This is so much more than a simple read. I'm disabled. I don't often go out that much. Most of my free time is spent reading. I have read hundreds, if not thousands of books. This book is by far probably one of the best books I have ever read. Because I am not as gifted as this brilliant author, I am having a hard time finding just the right words to describe the journey I took. It profoundly affected me, as a mother with a special needs child. More importantly, it "reached" my son, who eagerly found himself sitting with me way past his bedtime to read. We couldn't get enough. The story wasn't just well written, it didn't just have a plot, or characters. This book became alive. Both my son and I could picture each character, each scene as it played it, and the emotions were so real, we often had to stop. Stop to give each other a high five when things went well. Stop to curse and shake our heads wildly in anger, and mostly stopped to share so MANY MANY tears. Tears for Melody. Tears of frustration. Tears of sympathy. Tears of hope. And tears of gripping pain. I don't know who her target audience was. She had me at the reviews. But this book should be mandatory reading for every parent, whether they have typical kids or not. I am grateful for this author for bringing my son and I together. Not just by reading a book, but by bringing us together in a way that I usually not privy to. My son will typically tune out everyday conversation with talk of video games, iPad apps, scripted conversations taken from clips of a tv show he likes that he repeats over and over. For just once, a very special once, we were actually sharing this together. This book is a gift. It was to me. It was to my son. It stays with you long after the book is read. It is by far, one of the best books ever written. Thank you, Mrs. Draper. Not only for this book, but for what it gave me and my son.

I got this for my son to read for school. I have a hard time finding books that he actually enjoys, and he really enjoyed this book. I really enjoyed seeing a main character that has a disability!

Veio de acordo com o solicitado.

一気に読みました。面白かった！ 思いを言葉にして表せることの幸せを改めて教えてもらいました。 主人公が両親に I love you. と伝える場面では思わず涙が・・・。

Préparation de la rentrée scolaire

Out of My Mind is the story of a pre-teen girl, Melody. It is a first-person narrative mostly about what's going on inside her mind, hence the name. Melody was born with cerebral palsy. She cannot stand. When she sits, she has to be strapped to her chair to prevent her from tumbling down. She has problems chewing and swallowing food or even drinking water. And she cannot speak. When she tries to talk, “the words explode in her brain, but all that comes out are meaningless sounds and squeaks.” But Melody’s brain has developed normally. In fact, her intelligence is well above average and she is always eager to learn. She is also blessed with a photographic memory. Her most painful problem is that she has no way of communicating her knowledge, thoughts or emotions to anyone. As she writes, “I can say “uh” and “ah” pretty clearly, and, if I concentrate, sometimes I can squeeze out a “buh” or a “huh.” But that’s it.” Very few things can be more frustrating than this inability to express or communicate. But even her frustration she cannot express! When I read some of her passages describing how she needed to communicate but even someone like her mother who was one person who came closest to understanding her, would often fail to understand, I was reminded of a poem- The Eve of St Agnes by John Keats in which he wrote: “No uttered syllable, or, woe betide! But to her heart, her heart was voluble, Paining with eloquence her balmy side; As though a tongueless nightingale should swell Her throat in vain, and die, heart-stifled, in her dell.” When Melody’s helplessness overwhelms her, her arms and legs get all tight and “lash out like tree limbs in a storm.” She begins to screech and scream and jerk. She writes: “These things—I call them my “tornado explosions”—are pieces of me. All the stuff that does not work gets balled up and hyped up. I can’t stop, even though I want to, even though I know I’m freaking people out. I lose myself. It can get kinda ugly.” Melody does go to school. But there is a class for special needs children and she sits there. Feeling miserable because often she is treated as an imbecile because she drools, needs to be taken to the toilet by an attendant and doesn’t speak or even raise her hand. A teacher joins the school who introduces the concept of “inclusive periods” where for some sessions she sits in the same class as normal needs children. That is not an unmixed blessing either. As Melody writes, “But “inclusion” doesn’t mean I’m included in everything. I usually sit in the back of the room, going crazy because I know answers to things and can’t tell anybody. “What’s the definition of the word ‘dignity’?” one of my teachers asked a few days ago. Of course I knew, so I raised my hand, but the teacher didn’t notice the small movement I’m able to make. And even if she were to call on me, what then? I can’t very well yell out the answers. It’s really frustrating.” Because Melody does not speak, others just presume that she has nothing to say. As her classmate Claire once said, “I’m not trying to be mean—honest—but it just never occurred to me that Melody had thoughts in her head.” Many of us would have come across special needs people. While we do feel sympathy for them, I realised after reading this book that what such people need most is not our sympathy or even kindness; they need to be treated as just another person. As Melody’s mother once says, “A person is so much more than the name of a diagnosis on a chart!” No person’s illness should be treated as her identity. It’s a sad story but the book is very readable and also very educative.

Good