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«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»

-- [ Page 1 ] --

Welcoming Children

with Special Needs

A Guidebook for Faith Communities

Sally Patton

UNITARIAN UNIVERSALIST ASSOCIATION

BOSTON

Copyright © 2004 by the Unitarian Universalist Association of Congregations.

All rights reserved.

Cover design by Kathryn Sky-Peck

Text design by Communicáto, Ltd.

ISBN 1-55896-479-7

978-1-55896-479-2

10 9 8 7 6 5 4 3 2

11 10 09 08

We are grateful for permission to reprint the following:

Page xiii: “We Are,” Words and music by Dr. Ysaye M. Barnwell, Barnwell’s Notes Publishing, Washington DC.

For the gift of unconditional love and a vision of what is and can be, I dedicate this book to my children, Sarah and Tyler Contents Preface ix Introduction xiii Accepting All Children into Our Faith Communities 1 Raise Awareness and Offer Sensitivity Training 7 Develop a Task Force 8 Provide Accessibility 10 Reach Out to People with Disabilities 11 Issues of Social Justice and Advocacy 12 Ministering to Families 17 What It’s Like to Be the Family of a Child with a Disability 21 Ministers and Religious Educators as Listeners 24 Support Circles 25 Religious Education That Welcomes All Children 27 Religious Education Mission Statement 29 Religious Education Registration and 29 Gathering Information Make Religious Education Less Like School 31 Know Your Class 34 v vi Welcoming Children Create a Welcoming Environment 35 Separate Programs Are Usually Not a Good Idea 36 Teaching the Anxious Child 37 Teaching Difficult or Disruptive Children 38 Teaching to Different Ways of Learning and Knowing 45 Learning Centers 52 Spirit Play 56 Teacher Training 61 Learning Disabilities 75 Description 76 Discussion 79 Ministering to Families 84 Ideas for Teaching 84 Attention-Deficit Disorder 86 Description 87 Discussion

–  –  –

Never, ever forget that you have been chosen for this very special journey. It matters not what the challenges may be;

what matters is that you open your heart to this child. For as difficult as things may get, you will discover that this soul, wrapped in this precious little package, has much to give and volumes to teach you about yourself—if you are willing to learn.

—Trena Tremblay, You Will Dream New Dreams Although I did not realize it at the time, the diagnosis of my five-year-old son, Tyler, as severely dyslexic would launch me on a spiritual journey of discovery and healing that continues today.

Back then I was, I suppose, an agnostic. Today, I believe we are all manifestations of God.

My journey to this vision of the wonder of life and the spiritual connectedness of all living things was not an easy one. For too long, I felt I was living permanently in the dry desert of no possibilities and few beginnings. But somehow, I made it to the green forest, where I was nourished but still terribly confused. At times, I could climb a tree and gaze briefly on what might be and receive moments of clarity. I had no idea, however, that the process of understanding and helping my son would heal me. I was able to leave the forest of confusion with deep gratitude for the divine in every

ixx Welcoming Children

person and return to my original passion and profession of working with children with special needs—only this time, in a spiritual way.

Writing this book has become part of my journey of spiritual awakening. At times, this work has been intensely emotional and extremely confusing, but it has always been deeply satisfying. Although I had a background in special needs, researching current practices in this field led me to discover a totally different way of looking at children with special needs. I came to the conclusion that while labeling may help children obtain the services they need, it ultimately hinders and even harms them. I was primed for this discovery by the insights I had gained educating myself about learning disabilities and struggling to obtain needed services for my son. I immersed myself in the literature and resources for each disability group and came away with not only a much greater understanding of the human condition but also a new vision for spiritual healing of the world. To put it succinctly, I now look at children with special needs through different eyes. I am much better able to see the wonder and incredible beauty in each and every child. I can now embrace the opportunity that children with special challenges provide for my own spiritual healing and growth.

I hope that religious professionals, lay leaders, and parents will use this resource to begin the process of welcoming all children into our congregations. I also hope that parents will find it useful in their search for help for their special-needs children. Although I have a master’s degree in education in developmental psychology and have worked in the disabilities field for over thirty years, I am not a professionally trained expert on any of the disabilities described in this book. Rather, I reviewed the literature and tried to condense a staggering amount of information into a helpful, easyto-understand format. Regardless, much more information is available on each disability group than is presented here. I only scratched the surface.

xi

Preface





In reviewing the literature, I came to my own conclusions about the debates and disagreements among professionals. My biases are clear and some, I know, are controversial. One such bias concerns how our culture has defined what is acceptable behavior, what is intelligence, and what we should believe about related issues. For the most part, these definitions are quite narrow, not allowing for much diversity of thought or behavior. Any person who deviates from these normative definitions may be labeled disabled or disordered.

Another area of debate in this field concerns the use of medication. I believe we have come to rely too heavily on drugs as the solution for all our problems. To borrow Wayne Dyer’s phrase, I believe instead that we can find a spiritual solution to every problem. When the children are safe and loved, we are all safe and loved. For if each one of us can love all the children who are labeled different, wounded, disabled, ugly, defiant, and angry and make them safe, then our love has no bounds. We can change the world, and we can heal the hate.

We have a long way to go to form this spiritual, inclusive world, but our Unitarian Universalist faith communities can lead the way. In some respects, it may seem like a small step, but in other ways, it can be huge. Bears Kaufman, of the Option Institute in Sheffield, Massachusetts, said to those of us attending a workshop, “You have enough love in you to float the world.” I believe that. Our love and acceptance can change the world for children who are perceived as different. We can be models, we can lead the way, and we can float the world with our love. Opening the doors of our churches to all children, no matter their disability or struggle, will move us one step closer to healing the world. I truly believe this.

Introduction

For each child that’s born The morning star rises And sings to the universe Who We Are

–  –  –

If we believe that every person is born with a mission and a purpose, what does this mean for our ministry to children with special challenges? Often, we get so wrapped up in the difficulty or the problem itself that our reactions to the disabling condition prevent us from seeing who the child really is. In actuality, it is the perceptions and prejudices of other people that often prevent children with disabilities from participating fully in society.

Children with disabilities are, first and foremost, children with dreams, strengths, and weaknesses, and they have the right to be loved and nurtured. Somewhere in the morass of labels, diagnoses, opinions, facts, myths, and misinformation is a unique and individual child who has gifts to offer the world. Unfortunately, he or

xiiixiv Welcoming Children

she is often lost in the hunt for help, the search for a cure, and the desire for relief and healing. As Unitarian Universalists, we may not be able to provide therapeutic resources, but we can nourish the spirit and help heal the soul.

As faith communities, we can reach out, accept, and be supportive of people who are suffering, struggling, or perceived as being different, not only by accepting special-needs children into religious education programs but also by involving them in the lives of our faith communities. Unitarian Universalist congregations can be welcoming and inclusive places for all children as we affirm and promote all our Principles, especially the inherent worth and dignity of every person; justice, equity, and compassion in human relations; and respect for the interdependent web of all existence. In our churches, children with special needs can gather strength and support for overcoming the obstacles that society imposes.

The majority of books written about children with special needs are intended to help parents and professionals understand the nature of specific disabilities. They generally address treatment, advocacy, education, and parenting strategies. This book is written for ministers, lay leaders, religious educators, and parents within faith communities and provides descriptive information and resources for further reading. However, the emphasis is on a spiritual exploration of each disability and how to fully include children with special needs in our congregations.

It is appropriate for faith communities to discuss spiritual growth, not only to understand what it means to be an inclusive community ministering to marginalized people but also to prepare religious professionals and lay leaders to provide meaningful and effective pastoral care for families. When we view children who struggle from a spiritual perspective, we usually see them in alternative and affirming ways that differ substantially from how mainstream professionals see them. The professional community focuses almost exclusively on these children’s deficits and problems and ways to fix them.

xv

Introduction

Parents are exposed to this perspective on an ongoing basis.

When they approach a minister, lay leader, or religious educator for advice or pastoral care, most are not looking for more of the same information. Instead, they want help exploring the complex moral, ethical, and spiritual meaning of having a child with disabilities. Therefore, it makes sense that this book, written for a spiritual setting, provides an alternative, life-affirming perspective in contrast to many conventional views.

Labeling children by their disorder or disability is a doubleedged sword. When used properly, labels can help us understand children’s behaviors and problems. They can also help parents obtain needed services for their children. At the same time, labels can cause pain, isolation, and confusion. They can be misleading and emphasize differences for the purpose of exclusion. In an ideal world, we would not have to label. All children would be accepted for who they are and receive the appropriate services and education for their needs. We would accept that everyone is different and that our uniqueness is an opportunity for connectedness.

This book uses traditional labels to describe various disabilities because they are necessary to provide a framework for understanding the children in our congregations. When the meaning of the sentence allows, a term such as special needs, difference, challenge, and difficulty is used instead of disability to humanize the diagnostic process. The person is presented first and then the disability, so that the text reads a child with a disability, not a disabled child. Language does affect perception. By putting the person before the disabling condition, we convey that a person is a human being first and foremost. No one is his or her disability.

Section One of this book focuses on why and how to implement an inclusive ministry for children with special challenges, including awareness training, teaching strategies, and congregational and pastoral care for families. Section Two provides information on how to apply the lessons from Section One to children with specific disabilities, considering disabilities from an alternative, spiritual perspective. It is not possible to include all the xvi Welcoming Children different types of diseases, disorders, and impairments in the world that can cause disabling conditions. This book includes the major disability groups as well as the disabilities that are most prevalent among the children in our congregations.

As you read and use this book, try to drop whatever assumptions you may have about people with disabilities and go beyond the labels to find ways to minister to the children and families that seek your spiritual understanding. What will come shining through on this journey of discovery is a spiritual connection as well as a sense of wonder and appreciation for all life. The endurance and sacredness of the human spirit is demonstrated by the thoughts, perceptions, and actions of children who struggle courageously with sometimes enormous and often painful challenges to attain a sense of self-worth and beauty.

Accepting All Children into Our Faith Communities Welcoming children with special needs into the congregation is a blessing for everyone concerned. The children feel the welcoming acceptance of their peers; the parents can relax into their own spiritual journey, knowing that their children are in a safe and loving environment; and teachers and other children have a unique opportunity to live out some of the UU Principles, including respect for all humanity, fair and equal treatment and sharing, and support of those who are differently abled.

—Cynthia Wade, Director of Lifespan Religious Education, Unitarian Universalist Society of Geneva, Illinois A Unitarian Universalist woman who was a leader in her congregation once told me that her church welcomed children with special needs. Then she went on to describe what happened when a boy with autism tried coming to her church. “He made noises in the service and noises in his religious education class. He just did not work out,” she said.



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