Laura Kramer - Uncommon Voyage: Parenting a Special Needs Child

Copyright 2017 by Laura Shapiro Kramer

All rights reserved.

No portion of this publication, except for a brief review, may be reproduced, distributed, or transmitted

without the express consent of the author.

Cover Design by James Rattazzi

Edited by Christine Maloof Corso

Published by BookBaby

Printing and/or ordering information available at

uncommonvoyage.com

First Edition

ISBN: 978-1-48-359273-2

For my parents

and

for all parents

It matters not how strait the gate,

How charged with punishments the scroll,

I am the master of my fate,

I am the captain of my soul .

From Invictus, by William Ernest Henley

Believe in yourself and be prepared to work hard.

From the teachings of B.K.S. Iyengar

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 Seths diagnosis. The book described Seths 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.

With Seths diagnosis so began my unfurling. The ship I was on was not going on a direct route. I was in uncharted waters with my familymy precious cargoon board. The only thing to do was to take charge and steer my vessel myself and take on board the best I could find. 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 perspectiverelevant personal experience, practical information, and resourcesall 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 knewI never stopped learningand 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 realize is that throughout the journey, the deeper questions about life keep surfacing. Many of the questions I was asking as Seths mothera parent of a special-needs child and his siblingI 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 voyagehow 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 ships fulcrumhow the shifts in a familys 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 Lauras Insights .

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

Lauras 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 is 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 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 to find the support you need for wherever you are on your childs, your familys, your own journey.

Uncommon Voyage does not address individual conditions. I am relating to our universal experience. No matter the diagnosisautism to schizophrenia to cerebral palsysome things belong to all of us. Shock, ambivalence, chafing between doing too much and doing too little, grief, worry, guilt, living with shattered dreamswe 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

This book contains multiple links to resources in the form of books and links to web sites. In addition, you will find links to our online community at my web site, uncommonvoyage.com, and on Facebook and Twitter.

You can access an expanded Resource Guide on my web site.

A handy guide to recall

passengers on the voyage.

In order of appearance

Jay: my husband

Amy: Seths first pediatric physical therapist

Dr. L: our pediatrician

Annie: my physical therapist

Susan: a pediatric physical therapist recommended by Amy & Annie

Peggy: Seths occupational therapist

Dr. G: a pediatric orthopedist

Mayra: a part-time helper who provided assistance with Seth

Dr. Daniel Kessler: a pediatrician specializing in developmental disabilities

Charles: a local Feldenkrais teacher

Anat Baniel: a renowned Feldenkrais practitioner, especially with children

Carola Speads: a renowned teacher of body work, especially movement and breathing

Mia Segal: the leader of my Feldenkrais training

Haya: my daughter

Dr. Domenick Masiello: a cranial osteopath and homeopath who treated first me, then Seth and Haya