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Love is a Start....The Real Challenges of Raising Children with Emotional Disorders (Revised Edition)

Love is a Start....The Real Challenges of Raising Children with Emotional Disorders (Revised Edition)
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Love is a Start....The Real Challenges of Raising Children with Emotional Disorders (Revised Edition)

 
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This book is for parents who are raising children with brain-based disorders. The disorder might be Autism, Aspberger's Syndrome, Attention Deficit, Attention Deficit with Hyperactivity, Neurologically Based Learning Disabilities, Fetal Alcohol Syndrome, Clinical Depression or Bi-Polar Manic Depression.

Typically, children with these disorders struggle in their ability to learn the activities of daily living such as: dressing, hygiene, grooming, and academics. In the older child there is a struggle to engage in purposeful activity, problem, solve, follow-through, and cope with stress. In adulthood these difficulties show themselves in such things as a lack of safety awareness, poor money management, and poor judgement in general, which will have an impact on the individual's ability to live independently. In a very broad way, these life skills can also be thought of as adaptive skills.

Unknown to many is that at the heart of each of these brain-based disorders is something called Sensory Integration Dysfunction. Sensory Integration Dysfunction is a term used to define the brain's inability to integrate for use the information received from the senses of movement, touch, sight, sound, taste, and smell. Since all information that requires higher level thinking enters the brain by way of these sensory routes, it is critical that the human brain be able to receive correctly, or at least tolerate, input from the senses. Occupational therapists trained in treating Sensory Integration Dysfunction strive to help the child not only tolerate sensory input, but also to integrate it for use and thus promote optimal brain health, growth, and development. Granted, brain-based disorders are disorders for life; we cannot fix them. However, studies have found that when treated also with Sensory Integration Therapy, these disorders can be impacted by degrees so that adaptive life skills can be learned all the while the nervous system is maturing. This can mean independent living with supervision one day for the adult with a disability. It can mean an age appropriate child being able to stay home alone safely for several hours. It can mean a child being able to let himself into an empty house at the end of the school day without fear. It can mean a child going to school, tying her shoes, making a sandwich, and participating in social groups. It can mean a family living a relatively normal life and in harmony with the child with the disability.

Living in harmony with a child with Sensory Integration Dysfunction can be especially challenging. Unlike children who have noticable physical handicaps, Sensory Integration Dysfunction is a hidden disorder. Too many people (parents and professional alike) do not know what it looks like, as was the case with Shilts; the author of this book. As an adoptive parent, Shilts loved her child as much as any birth parent does. She had the best of intentions. Her problem was ignorance. Ignorance about Sensory Integration Dysfunction and its impact on behaviors as well as its impact on the parent-child relationship. Some children with Sensory Integration Dysfunction can have problems building and maintaining personal relationships in general. For children with severe Sensory Integration Dysfunction (as was the case with Shilts' child) it can be impossible. An intimate relationship, such as that between parent and child (and later a mate), requires the ability to give and take in a reciprocal way. Shilts knew early on that there was something missing in the relationship-something she coult not define-which was the child's inability to give love back.

Shilts struggled for a long time with the traditional techniques thought to be helpful to children who do not relate to others. But it wasn't until she realized her child's problem was with the brain rather that the spirit that she was able to move forward; to start "thinking outside of the box." Parents and therapists in many other states were using cognitive remediation/brain development techniques and strategies to help children like hers. She did not have to accept that nothing could be done. So she set to work to help her child. And help him she did. It was a spiritual journey as well as an educational one as she had to have faith in something she could not always see: the development of a child from the inside out. She also learned that she alone was the best advocate for her child.

This book is inspirational for parents. Shilts' children are now in adolescence and leading full and productive lives. Shilts is in private practice teaching other parents in her area how they too can bring nature and nurture together to develop the child from the inside out. And because the artist in her lives to create, she works on a novel in her spare time.

 
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Product Details
Author:Donna Shilts
Paperback:328 pages
Publisher:Lookagain Pub
Publication Date:July 01, 1999
Language:English
ISBN:0966631307
Package Length:8.4 inches
Package Width:5.5 inches
Package Height:0.9 inches
Package Weight:1.15 pounds
Average Customer Rating: based on 5 reviews

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Average Customer Review:4.0 ( 5 customer reviews )
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16 of 17 found the following review helpful:


5Love is a Start is Best Place to Start for Special Parents!  Mar 18, 2000 By Karla Akins "Karla Akins"
If you work with children with special needs, are a parent of children with special needs, a health professional, a social worker, an adoption worker, a teacher, or a counselor--this book is a MUST read. Before you adopt special kids, you should read LOVE IS A START. This book should be required reading for anyone pursuing adoption, foster parenting, or a degree in any field that has to do with children with Fetal Alcohol Syndrome, Sensory Integration Dysfunction, or any other emotional disorders. If politicians would take the time to read this book, they would discover the horror story that too many families live with every day. The horror story that is told in LOVE IS A START isn't just the story that Donna Shilts writes of her own children, but it is the horror that she is not alone. Donna's family is just one of thousands in the United States today struggling to live one more day with disabilities. Shilts has given those who have no voice, a platform from which to soar. Shilts allows the reader to live the life of an American woman, struggling to rear children that no one else wanted. Policy would surely change, were the right policy makers to read this life-changing story. Reading this book will mean that other parents with special needs children will be heard, they will be believed, and they will be understood. Excellently written, a page turner (I read it in two sittings!), and painfully honest, Donna Shilts makes herself vulnerable to her readers as she exposes her inner most thoughts of what it is like to parent an adopted child who seemingly cannot bond, understand, or love. She takes us on her journey, beginning only with love in her heart, and guides us through the rockiest places to finally arrive at hope. This book is an encouragement for all parents and professionals who dare to believe in a child that others haven't the courage to believe in.

11 of 11 found the following review helpful:


5A roller-coaster ride through life with special kids  Nov 27, 1999 By Terrianne E. Mauro "temauro"
As the adoptive mother of one child with FAE and sensory-integration disorder and another with language delays and learning differences, I have to say that I greatly enjoyed this book...Well, *enjoyed* isn't quite the right word, is it? Empathized, sympathized, identified, learned, felt sad, felt mad, felt relieved that someone else could feel so clueless--all of those are closer to the mark. The experience of thinking everything is all figured out followed by the realization that things are still not right is a very familiar one, and it's great to see it captured in print so that parents like me can show it to other people and say, "See, I'm not the only one who's gone through this! I'm not nuts!" It's a tremendously empowering read for those who are on the same roller-coaster of life with challenging children, and an enlightening parent's-eye view for those who are watching from the ground.

6 of 6 found the following review helpful:


5An excellent and informative book  Feb 29, 2000 By Mary L. Fleur
As an adoptive parent of two children -- one of whom suffered neurological damage as a result of early neglect -- I read this book with great interest. It is a very realistic account of the struggles one faces in understanding what needs to be done. I could relate so well to the differing (and often contradictory) diagnoses one receives; to the inability of doctors and psychologists to understand the problems you face; as well as thoses in the school systems to understand how your child learns. I identified with the struggle to decide if medication will help and with the realization that as the parent you and only you can serve as the best advocate for your child. This is one of the better accounts of sensory integration issues and I intend to recommend it to others, as it gives many good illustrations of how important sensory issues can be. I very much appreciated the honesty in the book. There are so many times we question our ability to parent; wonder what we have taken on; and try to find the correct strategy to manage difficult behaviors. Ms. Shilts has really "been there" and I am so grateful for her story. I would hope to see a follow up book in a few years as I grew so attached to both boys that I would love to know how they are faring in their teenage years.

6 of 7 found the following review helpful:


4One family's struggle to meet the needs of damaged children-  May 23, 1999
Donna Shilt's book will validate the experience of many families with special needs children. She describes the daily frustration, exhaustion, uncertainty, joy and fear of dealing with children that nothing seems to help--from the dazzling insights and deep claims of love to the shame of failure and the soul-deadening effects of trying to love a child who can't love back, help a child who can't or won't "get better." The book reads like a novel--the almost surreal struggle of an adoptive mother to find out what works and who can help in the face of fragmented services and ponderous bureaucracies. The book brought home to me the tremendous isolation of all caregivers in our society and the incredible amount of life-energy, intelligence and commitment necessary to deal with damaged children and all the professionals and organizations who try to help. Every prospective adoptive or foster parent should read this book to get a glimpse of what they're in for. Those of us in the "helping professions" should read it to get a clearer understanding of how our focus on the needs of the child can exclude or ignore the needs of the care giver and devalue their experience. The author is not Pollyanna. She doesn't have or offer a cure for every disturbed child. On the other hand, she won't insult your intelligence, and the solution she found offers hope for children whose behaviors include out of control rages, destructiveness, learning problems and attachment issues. Highly recommended.

13 of 19 found the following review helpful:


2Fascinating but worrying  Dec 13, 1999
In many ways, this is a fascinating account of the devastatingeffects on one parent of tring to raise two children with fetalalcohol effects/syndrome and other serious special needs, Jacob andJared. Yet there are many aspects of it which are worrying in ways which I'm sure the author did not intend.

The book seems to be intended as a plea for better services and more respect for families adopting children with special needs, yet in many respects it is more effective, possibly unintentionally, in highlighting the self-generated problems faced by adoptive parents with unrealistic expectations (she collapses in despair when she realizes of Jared "I couldn't fix him" and decides that this means "his would be a wasted life") and mixed feelings even before adoption.

In contrast to her clear affection for Jacob, her relationship to the younger boy, Jared, is particularly worrying. She states that she didn't want to adopt him and didn't feel she could meet the needs of both boys, but did so because she felt that the two boys should be together. She may love Jared, but she certainly doesn't seem to like him, and describes in detail the resentment and despair he provokes in her (one day, she writes "I actually found myself thinking that if he was ran over by a car and killed, the world would be the better for it"). She concludes at one point, "There would never be any joy in parenting Jared - only hard work, disappointment, shame, and sorrow," and gives no indications that she has revised this opinion by the end of the book. Her treatment of Jared at one point appalls an old friend so much that she never visits again.

She rejects Jared's diagnosis with high-functioning autism/Asperger's syndrome on the grounds that "I knew enough about autism to think there was a mistake", although she doesn't know enough to know that this diagnosis doesn't contradict their earlier diagnosis of pervasive developmental disorder as she claims - in fact, it confirms it, as Asperger's syndrome is one of the group or spectrum of conditions referred to collectively as pervasive developmental disorders. She states that Jared is socially isolated and inept owing to his inability to understand social rules, a perfectionist with huge problems transitioning from one activity to another, obsessed with tying things up, restricted in his play, incredibly literal in his understanding of words, clumsy, one-sided in his interactions, and often "in a world of his own"; he rocks, bangs his head when little, runs in circles, has a compulsive need for sameness, and serious sensory hypersensitivities, including an auditory processing problem - all classic symptoms of a pervasive developmental disorder. Perhaps the diagnosis was indeed incorrect, but Shilts never gives any reasons why she thinks so. Instead, she sees Jared's inability to understand or take into account other people's feelings as proof that he is "greedy and selfish", a "willful and malicious child".

She is puzzled as to why her endless "processing" of his misbehaviour with him fails to work (he's diagnosed as having a language disorder and has huge problems connecting cause and effect), while mentioning that this processing alternates as a response with increasingly severe spankings.

She claims that finally learning about sensory defensiveness changed everything for the better, and yet the two boys were diagnosed with sensory integrative problems early on: the smallest amout of reading about sensory integration problems should surely have mentioned sensory hypersensitivity and defensiveness. She explains that sensory integration dysfunction causes tactile defensiveness (which makes touch overwhelming and intolerable), but then enthusiastically describes her use of "holding therapy", which involves forced holding of a child until they submit (and is considered abusive by many experts).

Special needs adoption undeniably poses great challenges. Parenting one child with severe special needs can put an often unendurable strain on any parent; the stress of trying to parent two must be incredible, and no parent is perfect. But if Jacob and Jared are very difficult children, Donna Shilts in many respects seems to be an equally difficult parent. She sets out idealistically to "rescue" the two children, but eventually her actions seem to verge on the abusive, including actually biting Jared (aged 9) as a punishment for biting other children. Parenting children with special needs is very tough, but ultimately, they are the children and she is the adult. It takes great courage to admit to disliking and resenting a child, let alone biting them; but the reader cannot then be asked to admire the person who makes such an admission as a "model parent" or pity them as a martyr.

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
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