Helen Conroy - Revolutionary Grandparents: Generations Healing Autism with Love and Hope

Copyright 2016 by Helen Conroy and Lisa Joyce Goes

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Library of Congress Cataloging-in-Publication Data is available on file.

Cover design by Rain Saukas

Cover photos: iStockphoto

Print ISBN: 978-1-5107-0538-8

Ebook ISBN: 978-1-5107-0540-1

Printed in the United States of America

Dedicated to all Grandparents who have walked beside us on our journey, supporting and loving their children and grandchildren through the ups and downs of autism.

Contents

Foreword

ONE OF THE BIGGEST TRAGEDIES THE HUMAN RACE HAS HAD TO FACE in recent history is the epidemic of autism. Much of the heartache that many parents and grandparents have had to face could have been eliminated if our health agencies had done a better job.

When I was Chairman of the Government Reform and Oversight Committee in the US House of Representatives, I had many hearings on autism. There was very strong evidence that mercury in childrens vaccines was one of the causes of autism. For whatever reason, the health agencies in America closed their eyes to the evidence that was uncovered in those hearings.

I am convinced that thimerosal, the mercury preservative in childrens vaccines, is a contributing factor in this epidemic. In my opinion, all parents should try to find vaccines in single shot vials that are thimerosal-free. Four years of hearings on this issue, which included testimonials from doctors and scientists from around the world, should not be ignored.

I want to thank the authors of this book for working so hard to bring this issue to the attention of parents and grandparents everywhere.

Congressman Dan Burton, Retired

Introduction

WHEN MY SON HARRY AND I LEFT THE DEVELOPMENTAL PEDIATRICIAN S office with an autism and probable apraxia diagnosis in hand almost six years ago, I had a heavy, heavy heart. It wasnt because I understood the full implications of autism or how it would change us as a family, since I did not. It wasnt because I realized I would come to spend on treatments many times over what we had spent purchasing a home. It also wasnt because I mourned the friends he might never have, the college he might never attend, the jobs he might never hold. No, none of those things. My heart was heavy because the doctor left me without hope.

Do the best you can, for as long as you can, and then Then, he implied, we would need to look into institutionalizing my son, my sweet, beautiful angel. I questioned the doctor about things I had read but was told that diets didnt work and intensive biomedical interventions could be deadly. I was told to just survive, to do my duty for as long as I could. The doctor also told me that I shouldnt feel guilty when the time inevitably came to turn my son over to a strangers care.

As I drove away from the office, I looked at my son in the rear-view mirror. I was so sad. But I was mourning a loss that hadnt occurred. Harry was still very much alive. He was, my mother reminded me, the same child I had brought into the office a few hours earlier, hoping that this physician could tell me what was wrong and how to fix it. The same child I loved with all my heart. The same child I had held, and rocked, and whispered sweet words to the night before. So instead of handing my hope over to a white-coated grim reaper, I vowed to cling to it with every shred of my strength.

I looked back at his beautiful face, smiling at the movie playing on the cars DVD player, and I made a promise to never give up on him.

No one in my family had any experience with autism. It became my job to relentlessly research the disease and become the expert to guide my family in what to do. My even more important job, however, was to hold hope high, to share it with everyone, to let them know that we would find our way together. It became my job to hold the lantern in the dark and guide us all along the unlit passageways, reassuring everyone we would eventually find the way out.

When I talk to families with a newly diagnosed child, the first thing I always say is There is so much hope. Because there is. Hope is the one thing you absolutely have to have on this journey. Money and a bit of luck are great, but without hope your path will be much more difficult.

The other critical pillar is family support. Harrys four grandparents have all played pivotal roles in his development. We are very blessed that they all believed in what we were doing and took on parts of his care. All of them have a special relationship with him; all of them have paid for treatments; all of them have watched him when we needed a break. They have cooked for him, tickled and wrestled him, done therapy with him, and considered him as capable as his siblings. We know how lucky we are, and we are so grateful that they are so committed to his life and well-being.

In this book, you will hear from a number of grandparents who are similarly committed to their grandchildren with autism. These families amaze me, and I am humbled by their stories of love and compassion.

Our hope for grandparents new to the autism diagnosis is that they will read this book with an open heart and follow the words of wisdom from their peers who have walked this path before them. I often think that, in some ways, a grandparent has a harder time dealing with this diagnosis than the parent.

No grandparent should have to grieve silently as they watch their childs life fall apart while they mourn the loss of a grandchild. One in seventeen grandparents is now affected by autism. Chances are, many of your golf buddies and bridge partners are among those affected. Start talking about autism in your community. Dig in with your son or daughter. Become involved and committed. We promise to be there to support you as you have supported us.

With much love,

The Thinking Moms Revolution

Helen Conroy

Bubby

The Power of Play

THERE ARE MOMENTS IN LIFE WHEN TIME STOPS AND YOU KNOW THAT your world has changed so completely that nothing will ever be the same again. I experienced one of these moments when my daughter phoned and told me between tears that she was sure that our seven-month-old grandson Ri was autistic. At first I challenged her and refused to believe the behavioror rather, lack of behaviorshe described meant that Ri was autistic. He was our miracle baby. How could he be autistic?

Our daughter had several miscarriages before the doctors finally discovered she had a blood disorder related to vitamin B12 and an inability to convert B12 into the methylated form that can be used by the body. This disorder caused blood clots to form during pregnancy. Eventually a solution was found. Although it was a high-risk pregnancy for both mother and child, our miracle baby was born. We were ecstatic. He was a beautiful baby. My husband and I stayed for two weeks after Ri was born to help out; then we drove back to our home eight hours away. We were long-distance grandparents. It was very difficult to leave our grandson, but we were determined to form a lasting relationship with him and visit as often as possible. I did not know then that it would be several years before Ri recognized me as his Bubby. (Thats the Yiddish word for grandmother.)