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Carly's Voice: Breaking Through Autism [Format Kindle]

Arthur Fleischmann , Carly Fleischmann
4.5 étoiles sur 5  Voir tous les commentaires (2 commentaires client)

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Descriptions du produit

Extrait

1

In the Eye of the Storm

A news reporter once asked me to describe our a-ha moment with Carly. He wanted to understand that blinding flash of insight we had had about our daughter. I thought for a moment before replying, “There never has been a moment like that. Carly has always just been Carly.”

From the moment our daughters were born on a gray morning in January 1995, both my wife and I knew which twin—Twin A or Twin B—was going to grow up to live the life of Carly, and which would become Taryn. Call it intuition or cosmic intervention, but one baby just was a Carly.

After the unsettled time around the birth of our son four and a half years earlier, we were elated to close the book on trauma and start a new life with our enlarged family. Matthew had been born during the grieving period for Tammy’s mother, who had died suddenly just months before his birth.

Having the twins had not come easily. Creating life was not an issue for Tammy; sustaining it had been. After three miscarriages in the years after Matthew was born, we were about to break the curse. We looked forward to a fresh start. Quid pro quo; we were owed that much.

“How many bedrooms do you have?” Tammy’s obstetrician-gynecologist had asked her cryptically five months earlier, during the summer of 1994.

“Three,” Tammy replied.

“You might want to consider four,” Dr. Amonkwa said.

It seemed that the Clomid, progesterone, and aspirin that he had prescribed had broken the cycle of lost babies and parental despair. Rather than one child, Tammy was pregnant with twins. Other doctors had told us that perhaps more children were not meant to be. But we, and in particular Tammy, seldom took “perhaps not” at face value.

After careful monitoring for the rest of the nine months, Tammy gave birth to our daughters. We considered naming them after the drugs that made their successful birth possible, but Clomid and Progesterone Fleischmann would have been cruel.

Our older twin and middle child arrived at 7:38 a.m., and her little sister, Taryn, fourteen minutes later. Carly had been the feisty one in utero, clamoring to get here. But once she arrived, she seemed to take a look around and say, “Oh, wrong place.” This world would never be in step with our little girl. Within weeks of her birth, Carly took on a startled and cranky look, one that matched her demeanor.

Taryn was peaceful and elegant with a cap of dark hair and a quizzical expression. But Carly arrived blotchy and patchy and looking surprised. From the prenatal medical records, there was little to suggest that the fraternal twins would have such different fates. Tammy’s medical chart indicated that the delivery of the girls was “spontaneous, vaginal, and uncomplicated,” much like the act of their creation had been. After a week in the hospital, we bundled our tiny new-potato-like parcels into furry winter baby buntings and brought them home to our modest Toronto house.

The next six months were a bleary, sleep-deprived period of normalcy. As normal as a household can be with three children under five, two of whom eat every three hours, twenty-four hours a day. Tammy and I would plod up the steep, narrow staircase to our bedroom around 9:00 p.m., lugging two babies and six mini-bottles of formula. Frighteningly, all six portions would be consumed before 5:00 a.m. the next morning, each feeding followed by the requisite diaper change.

Tired as I felt, I couldn’t fail to smile at the two little swaddled lumps. Carly and Taryn slept in a large woven basket that we placed atop a low dresser that Tammy had been lugging through life since college. It was stained a puzzling shade of green and had more sentimental than aesthetic value. Now tucked into an alcove in our bedroom, it served as a pedestal on which our daughters started their lives.

The two girls had spent nine months pressed together in Tammy’s womb and felt completely natural being tucked in tightly, snuggled closely. We made a conscious effort from the start to give them unique identities, refraining from dressing them the same or referring to them as “the twins,” but rather as Carly and Taryn. Yet, they were two halves of the same whole and would lie together, reaching out and touching each other, practically hugging. How were we to know that one day they would grow to be like the front and back cover of a book—matching opposites—with so much separating them?

Since dinner parties were out of the question (not that they happened often before the girls’ arrival), we covered our dining room table with a large pad and plastic tablecloth for changing the babies when downstairs. Tammy’s friend Sue would come over on Sunday afternoons and help us with laundry. While Tammy simultaneously fed the two babies, Sue and I would cook as much food as we could squeeze into our freezer for the week ahead. The first months were a blur of laundry, poo, spit-up, quiche, and lasagna. But Tammy was happy to have a family after the false starts and dying hopes. I have scores of photographs of the early days, each of us taking turns holding both babies. We both seem to have a tired but amazed expression, as if to say, “How’d this happen?”

Life took on a chaotic rhythm that was made manageable by the arrival of our nanny, Mari. Mari had recently moved from St. Lucia to join her sisters and cousins; one sister worked as a nanny for a friend of ours. She took to our daughters immediately, a broad, open smile spreading across her usually serious face whenever she saw the two girls. Although a very quiet person, Mari exuded confidence in running our household—a thankless task we were more than happy to relinquish. For the next twelve years she would buttress our family and steadfastly help care for all three of our children and home. Tammy and Mari divided the never-ending tasks of Matthew’s school and after-school activities and the seemingly endless work required to keep Carly and Taryn fed and clean. Tammy and I took a divide-and-conquer approach from the start, something that would stand us in good stead in the years to come.

My career had me at the office by 8:00 a.m. and seldom home before 7:00 p.m. Nevertheless, after work I did my best to focus on Matthew—to be sure he wasn’t left out. We had been warned that boys in particular could get regressive when new babies come into the house. I recall my brother more as a tormentor when he was nine or ten. He once tried to feed me cat food and put pepper in my sister’s chocolate pudding. On other occasions, he would hide under my bed or in the closet at night until the lights were out, then jump out and scream. Ghouls really do exist, at least until they become teenagers. Eventually, even little boys outgrow their wickedness.

Not knowing what to expect, I assumed Matthew might continue in the family tradition since he had his rambunctious tendencies. A year or two before the girls were born, we had bought a book titled Raising Your Spirited Child to help us understand why even the smallest thing, like an itchy tag at the neck of his shirt, could set off a full-blown tantrum. He was a rigid kid who vacillated between playful sweetness and the terrible twos that had overstayed their welcome.

While Mari and Tammy bathed the girls, I would eat dinner with Matthew. Then, in the warming spring evenings, I would take him to the park. As we walked, I often reflected on how Matthew’s infancy was also anything but ordinary.

Always a snorty eater, in the fall of 1990 when Matthew was eight months old, we had to rush him to the emergency room, barely able to breathe. After several days in the hospital while the doctors ran tests, we were told Matthew had been born with a double aortic arch. The vessels carrying blood to and from his heart were wrapped around his trachea and windpipe, literally strangling him like jungle vines choking a tree.

But Matthew was a trooper and rebounded from surgery quickly. Five years later, Matthew loved to hear how he had been a brave patient, how he was giggling and laughing within days of his operation. He wore his scar as a badge of honor. “You have no trouble eating now,” I joked with him. “Remember the time when you were two and Mom and I caught you taking an ear of corn out of the garbage after dinner?” Tammy and I had been washing dishes, and, upon hearing Matthew making noises of gastronomical bliss, found him smiling up at us as he finished an ear of corn that had been scraped from a plate into the garbage.

By late spring, the girls were sleeping through the night; Matthew was on a schedule; and Tammy and I even got an hour or two of quiet time before bed. We felt like we had gotten off the dirt road and onto the open highway. We traded a sedan for a minivan and ventured out on day trips and visits to friends, always lugging the girls, an oversized twin stroller, a huge diaper bag, and our rambunctious five-year-old son who ran circles around us making sounds like the Indy 500.

Before their first birthday, however, we began to see Carly and Taryn heading in different directions. Our first challenges with Carly were innocuous enough. Tubes in her ears to relieve the heavy fluid buildup one month. A few tests with audiologists to be sure the infections hadn’t compromised her hearing the next. Tammy and I could handle this level of intervention. Lots of kids had tubes put in their ears. It was as common as diaper rash. Just by looking at her, however, we knew that Carly had deeper issues than goopy ear canals.

While Taryn’s skin had smoothed into creamy baby softness, Carly’s often had a ruddy, chapped look. Taryn’s eyes seemed to giggle almost from birth, while Carly often wore a dozy gaze. And while Taryn was making headway at crawling, pulling h...

Revue de presse

"Carly's Voice makes it very clear that a non-verbal person with autism has a rich inner life. Typing independently enabled Carly to express wit, explain her sensory problems, and show that a good mind has been freed." --Temple Grandin

"I have learned more from Carly about autism than any doctor or 'expert,' and she has helped me understand and connect with my son in ways I couldn't have imagined. Her book takes the autism conversation to new places and disproves the ridiculous notion that non-verbal people with autism don't have feelings and thoughts or are unintelligent. Carly is--for me--autism's fiercest and most valuable advocate." --Holly Robinson Peete, actress, author, and autism advocate

Carly's Voice is the wishful slogan of a movement. Autism has spoken, and a new day has dawned. Carly's story is a triumph.” --Richard M. Cohen, author of Strong at the Broken Places and Blindsided

“In this unsparing but affecting account . . . it’s clear that while most people take the ability to communicate for granted, for Fleischmann it defines her daily struggles and miraculous successes. . . . [An] inspiring story.” –Publishers Weekly

“To read along as [Carly] expresses her feelings in conversations with her father is almost as stunning as when she writes of life inside her autistic head. . . . Both heart-wrenching and deeply inspiring.” –Kirkus Reviews

“For anyone who’s ever fallen in love with their child, misjudged a person, had their heart broken and then restored, Carly's Voice is for you. Wise beyond her years, Carly takes us inside her world—a young girl who cannot speak, but has more to say than anyone I’ve ever met. This book is exquisitely written with courage, honesty, and, most of all, love. I’ve never read anything like it.” —Monica Holloway, author of Cowboy & Wills and Driving with Dead People


“Throughout Arthur Fleischmann’s exceptional memoir about his and wife Tammy’s experience raising a
child with severe autism, it is the plaintive “voice” of the wordless-from-birth Carly that resonates. . . . It is Carly’s chapter, written in her words, and her charm that set this memoir apart.” –Booklist (starred review)

“A well-written story of one family’s struggle, perseverance, and triumph in helping a child with autism find her voice. This book will benefit people with autism, their families, and all who interact with them.” –Library Journal

“[Carly’s] explanation of what it feels like—emotionally and physically—to have autism is eye-opening. Quite frankly, I think [her] chapter should be required reading for our society, especially as we head into Autism Awareness Month.” --Parents.com

“Witty, sarcastic, and heartfelt, Carly’s words shine with personality and intellect, her strength and determination adding sparkle and hope.” --New York Journal of Books

Détails sur le produit

  • Format : Format Kindle
  • Taille du fichier : 2535 KB
  • Nombre de pages de l'édition imprimée : 402 pages
  • Pagination - ISBN de l'édition imprimée de référence : B00EDZ6JF8
  • Editeur : Touchstone (27 mars 2012)
  • Vendu par : Amazon Media EU S.à r.l.
  • Langue : Anglais
  • ASIN: B005FLOEGA
  • Synthèse vocale : Non activée
  • X-Ray :
  • Word Wise: Activé
  • Moyenne des commentaires client : 4.5 étoiles sur 5  Voir tous les commentaires (2 commentaires client)
  • Classement des meilleures ventes d'Amazon: n°159.465 dans la Boutique Kindle (Voir le Top 100 dans la Boutique Kindle)
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Commentaires en ligne

3 étoiles
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4.5 étoiles sur 5
4.5 étoiles sur 5
Commentaires client les plus utiles
Par Régine
Format:Broché
Many books about autism start with 50 pages of back-to-basics about autism: etiology, symptoms... This one not.
Books about autism seldom tackle parents' feelings. This one does deeply.
Testimonials often forget the impact of autism on siblings. This one not.
And obviously such sensitive testimonials from the deep inside of an autistic person can be counted on the fingers of one hand.
This book is really a Must-read for carers and, for non-carers readers, hopefully, will change the way passers-by gaze at autistic people and their family.
Avez-vous trouvé ce commentaire utile ?
5.0 étoiles sur 5 Un livre essentiel sur l'autisme 13 août 2014
Par Flicfloc
Format:Broché|Achat vérifié
Un ouvrage majeur pour ne plus présumer du retard intellectuel des personnes non verbales, atteintes d'autisme, pour comprendre - à travers le témoignage de Carly et de son père - ce qu'elles peuvent vivre au quotidien et chercher à faire exprimer leur "voix intérieure".
Avez-vous trouvé ce commentaire utile ?
Commentaires client les plus utiles sur Amazon.com (beta)
Amazon.com: 4.8 étoiles sur 5  285 commentaires
269 internautes sur 295 ont trouvé ce commentaire utile 
3.0 étoiles sur 5 Mixed feelings as a reader and ASD parent 27 mai 2012
Par BeckyFS - Publié sur Amazon.com
Format:Relié
As a reader, I think this book is enlightening and inspiring. I am grateful for Carly opening her life and her struggle for the general public to learn and to witness. As the parent of a child with autism, I found the financial and resource discrepancy between Carly's family and many families in this situation start to grind. The list of advantages quickly left me feeling detached from this family: full-time nanny, upper middle-class home/neighborhood, full-time (and weekend) therapists, summer camps for all the children, attorneys, vacations, and people giving up time and resources in every crisis.) Instead of feeling hopeful, I quit reading at page 223 when a neighbor offers to renovate her house to accommodate Carly living there four days a week. I know it may sound harsh, even envious--it is. But I wanted to hear about a regular family's triumph over autism--I hoped to hear about how we, too, may overcome autism. But without even a fraction of these resources, I am left feeling helpless. My husband and I haven't gone on a date in two years. Friends and family shake their heads and "tsk, tsk" over our situation, but no one offers us three hours A MONTH, let alone home renovations. I'm just not sure who the audience is for this book. Mostly because I don't personally know of any family with these resources. I would just caution other autism parents wanting to read a story about family struggle to be aware of this element to the book. Could Carly have improved enough to communicate if she didn't have 24/7 professional staff for the first 10 years of her life? Could her parents have stayed married if they didn't have four days a week without her home? My intent is not to trash the family. It's great that they were able to give their daughter and family so much. My intent is to say that had I known this part of the story, I doubt I would have purchased this book. It left me feeling depressed about what I can offer my child and hopeless for such a recovery for him.
29 internautes sur 30 ont trouvé ce commentaire utile 
5.0 étoiles sur 5 The Most Inspiring Story 28 mars 2012
Par Brian W. Saber - Publié sur Amazon.com
Format:Relié
I took on reading this book with a heavy heart as I've known the family well for more than 30 years and thought reading it would be too painful. But in fact the book inspired me in so many ways, perhaps in no more important way than in terms of my own parenting. Every parent can relate to how challenging it is to help one's children find their own voice in life. How do we encourage them, reward them, guide them, and discipline them in ways that encourage their growth and uncover their true voice? How do we give them the tools that give them the confidence to be all that they can be. And how do we forgive ourselves for all the times we fall short.

This is a miraculous story and I can't wait to see what Carly has in store for us as she continues to use her voice to dispel the ignorance we all have about Autism.
23 internautes sur 25 ont trouvé ce commentaire utile 
5.0 étoiles sur 5 Carly saves the world of autism 29 mars 2012
Par Jonas T Bradshaw - Publié sur Amazon.com
Format:Relié
Reading this book has allowed me to understand my own daughter, who is very much like Carly. I even went so far as to purchase a second copy for the ABA classroom that she is in. This book has helped open my eyes to some of the behaviors and activities that have been going on with my daughter. Carly and her family's struggles have helped pave the way for children like my daughter, and this book shows not only what they went through, but why Carly and other autistic children behave and act the way they do. While reading this book, I have highlighted several parts that coincide with my daughter. This is my new bible for my daughter and I can now look at her the way I have always wanted. I have always thought my daughter was extremely intelligent and was working through problems and solving puzzles, but this book has shown me to what extent she is performing at. Thank you both Arthur and Carly for sharing what you have endured, and allowing some of us to be able to take what you have learned to be able to apply it to our own lives.
14 internautes sur 16 ont trouvé ce commentaire utile 
5.0 étoiles sur 5 A must read for anyone who works with kids & adults with ASD 6 avril 2012
Par Bev Pike - Publié sur Amazon.com
Format:Relié|Achat vérifié
I first heard of Carly on YouTube. Her videos from 2020 and other interviews actually were what gave me the courage to bring my 47-year-old daughter home after 40 years!

I finished this book in a very short time - the first chapters on living with an autistic child reminded me of what life was like until my daughter reached age 7; the awful frustration, depression, and hopelessness of trying to find "a pill that would fix her" and finally having the "experts" tell you that this wonderful, beautiful little girl will never develop mentally past the age of 3. We were unable to care for her and keep her safe so we institutionalized her when she was 7.

Carly is able to tell the story from what the autistic child hears, sees, and learns - - its an amazing revelation that hasn't been believed until now! It will give you a whole new way of working with autistic children & adults. I think this is one of the most important books to be written this year!
8 internautes sur 8 ont trouvé ce commentaire utile 
5.0 étoiles sur 5 must read for every parent! 13 avril 2012
Par N. Gonzalez - Publié sur Amazon.com
Format:Relié|Achat vérifié
This book was an inspiration to read. I have to say that my son who is 10, was non-verbal until age 6. He still has speech delays and cannot fully communicate, thus the reason I ordered the book. There were times I cried, like when Carly said "fix my brain". I remember my son saying those words, but only because another boy had told him there was something wrong with his brain. This book has really helped me to continue helping and understanding my son and always allow him to be what he wants to be. Thank you Carly for letting the world know that although you could not speak, you have many amazing thoughts...and parents MUST listen to the inner voice of their child.
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