Introduction
The sea hath no king but God alone.
Anonymous

Uncommon Voyage was originally written as a memoir. It was the story of me and of my family after Seth’s diagnosis. The book described Seth’s development and education and included the story of my development and education. It described the person I became as the parent of a special-needs child. My exploration and eventual embrace of solutions in the world of “alternative” medicine were a big part of the story.

Seth was diagnosed and so began my unfolding. I built networks and support systems. I uncovered resources and guides in the world and in myself. I learned to advocate. The ship I was on was not going on a direct route and probably neither is yours. The only thing to do was to take charge and steer my vessel myself and take on board the best I could find. I became a communicator, an expert, and a pioneer. Eventually I left the safety of the harbor, ventured to another world, changed course, and found help for Seth and meaning for me.

There was nothing to help at first. (There was no internet, no Google.) I did not find a cohesive perspective—relevant personal experience, practical information, and resources—all in one place. Eventually I came to realize that such a thing could only exist if I created it for myself, and I did so by finding people who knew more than I did and combining it with what I knew deep down; by researching, trying things on myself, ultimately having the courage to use what I learned about me for Seth. Life became create and recreate, invent and re-invent.

After the first edition of Uncommon Voyage was published, parents reached out to me for support, for direction and ideas, and for a boost. They asked me what to do, what else I knew—I never stopped learning—and I found myself explaining in more detail what I discovered for Seth, how it shaped our family, and how it shaped me. I listened. The more I listened, the more I learned. What I realized was that throughout the journey, the deeper questions about life keep surfacing. Many of the questions I was asking as Seth’s mother—a parent of a special-needs child and his sibling—I was asking as a person examining her life.

In this edition of the book, I consider those universal and recurring questions and weave them into a practical guide. I made this edition of Uncommon Voyage a vehicle for your story, your voyage—how you see it, tell it, and are informed by it. I lay the groundwork in a brief narrative that describes my personal journey. I conceived the voyage in nautical terms thinking about a ship’s fulcrum—how the shifts in a family’s life are like the swinging pieces of a mobile, relocating to attain balance like a vessel rocking on the sea. As changes come along, we continually recalibrate our internal and external compasses to balance and to be able to pivot when necessary.

I developed this guidebook and organized the chapters based on the different aspects of being the parent of a special-needs child. Each chapter offers Navigation Points marked by compasses, and lighthouses illuminating Laura’s Insights.

compassNavigation Points are tasks to help you chart your course and identify what tools you have and what tools you need.

lighthouseLaura’s Insights are comments offering support. They give context for the endeavor to help you maintain your course.

You decide how far you journey, you determine the pace, and you judge when and where you double back or venture into uncharted waters. Within Uncommon Voyage there are an array of resources and experiments to explore. There is a suggested reading list within each chapter, and at the end of the book you will find a glossary, appendices, and additional suggested reading lists. I included a Ship’s Manifest for handy reference to keep track of who is who. Additional resources, including links to websites and organizations reside on the Uncommon Voyage web site, and I invite you to join the Uncommon Voyage community through Facebook and Twitter to interact with me and with others. I encourage you to ask questions and to share what you know. We learn from one another.

I gave thought to making this book easy to use and read. When deciding on a personal pronoun, rather than switching between “he” and “she” (I found the use of “one” or “they” a bit awkward), I have used “he” throughout this book to reflect my voyage with Seth. I hope that readers with daughters or children of indeterminate gender feel comfortable substituting the pronoun of choice as they read. I researched and chose the font Georgia for readability on both paper and screen.

The world of special needs is not a world where we are saved by some ready-made cohesive plan, or even where there is a set destination. The best we can do is catch the waves and go with the flow. Those who head out on an ocean voyage are wise to fortify and provision their ship and map out a general course. I am telling my story and offering navigation to help you discover your own path and and find the support you need for wherever you are on your child’s, your family’s, your own journey.

Uncommon Voyage does not address individual conditions. I am relating to our universal experience. No matter the diagnosis—autism to schizophrenia to cerebral palsy—some things belong to all of us. Shock, ambivalence, chafing between doing too much and doing too little, grief, worry, guilt, living with shattered dreams—we have common experience even within the differences. I hope there is enough here to help you feel less alone while you fight to give your child the best chance at a future of promise and discovery. The miracles are not what you expect but they are there.

Laura Shapiro Kramer
January 2017


Introduction
The sea hath no king but God alone.
Anonymous

Uncommon Voyage was originally written as a memoir. It was the story of me and of my family after Seth’s diagnosis. The book described Seth’s development and education and included the story of my development and education. It described the person I became as the parent of a special-needs child. My exploration and eventual embrace of solutions in the world of “alternative” medicine were a big part of the story.

Seth was diagnosed and so began my unfolding. I built networks and support systems. I uncovered resources and guides in the world and in myself. I learned to advocate. The ship I was on was not going on a direct route and probably neither is yours. The only thing to do was to take charge and steer my vessel myself and take on board the best I could find. I became a communicator, an expert, and a pioneer. Eventually I left the safety of the harbor, ventured to another world, changed course, and found help for Seth and meaning for me.

There was nothing to help at first. (There was no internet, no Google.) I did not find a cohesive perspective—relevant personal experience, practical information, and resources—all in one place. Eventually I came to realize that such a thing could only exist if I created it for myself, and I did so by finding people who knew more than I did and combining it with what I knew deep down; by researching, trying things on myself, ultimately having the courage to use what I learned about me for Seth. Life became create and recreate, invent and re-invent.

After the first edition of Uncommon Voyage was published, parents reached out to me for support, for direction and ideas, and for a boost. They asked me what to do, what else I knew—I never stopped learning—and I found myself explaining in more detail what I discovered for Seth, how it shaped our family, and how it shaped me. I listened. The more I listened, the more I learned. What I realized was that throughout the journey, the deeper questions about life keep surfacing. Many of the questions I was asking as Seth’s mother—a parent of a special-needs child and his sibling—I was asking as a person examining her life.

In this edition of the book, I consider those universal and recurring questions and weave them into a practical guide. I made this edition of Uncommon Voyage a vehicle for your story, your voyage—how you see it, tell it, and are informed by it. I lay the groundwork in a brief narrative that describes my personal journey. I conceived the voyage in nautical terms thinking about a ship’s fulcrum—how the shifts in a family’s life are like the swinging pieces of a mobile, relocating to attain balance like a vessel rocking on the sea. As changes come along, we continually recalibrate our internal and external compasses to balance and to be able to pivot when necessary.

I developed this guidebook and organized the chapters based on the different aspects of being the parent of a special-needs child. Each chapter offers Navigation Points marked by compasses, and lighthouses illuminating Laura’s Insights.

compassNavigation Points are tasks to help you chart your course and identify what tools you have and what tools you need.

lighthouseLaura’s Insights are comments offering support. They give context for the endeavor to help you maintain your course.

You decide how far you journey, you determine the pace, and you judge when and where you double back or venture into uncharted waters. Within Uncommon Voyage there are an array of resources and experiments to explore. There is a suggested reading list within each chapter, and at the end of the book you will find a glossary, appendices, and additional suggested reading lists. I included a Ship’s Manifest for handy reference to keep track of who is who. Additional resources, including links to websites and organizations reside on the Uncommon Voyage web site, and I invite you to join the Uncommon Voyage community through Facebook and Twitter to interact with me and with others. I encourage you to ask questions and to share what you know. We learn from one another.

I gave thought to making this book easy to use and read. When deciding on a personal pronoun, rather than switching between “he” and “she” (I found the use of “one” or “they” a bit awkward), I have used “he” throughout this book to reflect my voyage with Seth. I hope that readers with daughters or children of indeterminate gender feel comfortable substituting the pronoun of choice as they read. I researched and chose the font Georgia for readability on both paper and screen.

The world of special needs is not a world where we are saved by some ready-made cohesive plan, or even where there is a set destination. The best we can do is catch the waves and go with the flow. Those who head out on an ocean voyage are wise to fortify and provision their ship and map out a general course. I am telling my story and offering navigation to help you discover your own path and and find the support you need for wherever you are on your child’s, your family’s, your own journey.

Uncommon Voyage does not address individual conditions. I am relating to our universal experience. No matter the diagnosis—autism to schizophrenia to cerebral palsy—some things belong to all of us. Shock, ambivalence, chafing between doing too much and doing too little, grief, worry, guilt, living with shattered dreams—we have common experience even within the differences. I hope there is enough here to help you feel less alone while you fight to give your child the best chance at a future of promise and discovery. The miracles are not what you expect but they are there.

Laura Shapiro Kramer
January 2017