Tony DOrazio - Down Right Joy: Joyful stories of raising a child with special needs.

Copyright 2021 by Tony DOrazio

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Tony DOrazio
Jacobsladderfitness.com
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For details, contact tdorazio@att.net

Print ISBN: 978-1-09836-401-4
eBook ISBN: 978-1-09836-402-1

Printed in the United States of America on SFI Certified paper.

First Edition

Dedication

Thanks to the Lord God for making us and giving Jake to Karen and me.

Thanks to our parents Lou and Grace and a great extended family of caring and Christian people for helping us in our journey.

Thanks to the volunteers who serve Jacobs Ladder Special Needs Fitness.

Thanks to all the students in the special needs community who exercise and pray with us and who always seem to give me energy and put a smile on my face.

Thanks to Jake for working hard, being a good example, and helping us serve others.

Acknowledgements

Thanks to my wonderful wife Karen for her support and patience.

Thanks to Karen Ellicott for patiently editing this book and for sharing her insights regarding content, and for her encouragement.

Special thanks to photographer Stacy Jantz for helping with the photo layouts and for the great cover picture of Jake that she took. She also enthusiastically helped me get this book ready to publish. Could not have done this without her. Jantz Photography, Avon Lake, Ohio

Table of Contents

Foreword

Little did I know how my world would change when I walked into that kindergarten room so long ago. I can do this, I thought to myself as I looked at the little boy sitting at his seat. I had to admit, he could not have looked any more adorable than he did. He had on a plaid collared shirt, little khakis, and the cutest round glasses I had ever seen. He was a peanut. Probably one of the smallest students in the class. I sat down on the little chair next to him, feeling huge and in control. He did not acknowledge my presence at first. He just sat quietly listening to his teacher. I could hardly take my eyes off of him. He truly was one of the cutest kids I had ever seen. And then it came. The look I would come to know. The look that would remind me that I was not one bit in control of the situation. The look that would tell me this little, adorable peanut was in control. As he turned his head and raised his eyes above his round glasses, he looked not just at me, but through me, letting me know that no one or anything was going to tell this boy that he was not the one in charge.

I had never really known anyone who had Down syndrome. I dont mean I had not met anyone or had not seen anyone, but I had never really, truly known someone with Down syndrome. I am not sure, when I look back, what I honestly thought about Down syndrome. I do think that I thought I would have the upper hand. I mean I was not the one with Down syndrome. I did not have the disability, right? This was my first mistake. The word disability has no place near the words Down syndrome. The little boy I met that day, looking so frail and vulnerable, would change my world. Through Jacob, I learned to see the world in a way I had never seen it before. My world would be sometimes frustrating, but immensely more joyful than I could ever have imagined.

Laurie Beetler

Special Education Aide

Muraski Elementary

Introduction

This book is meant to encourage all parents of children with Down syndrome and other special needs. The focus is on Down syndrome because that is our experience, but much of what is here can apply to experiences with other special needs individuals. I especially want to speak to newer parents, because you may initially feel overwhelmed and in need of some good counsel. But more experienced parents can also gain insight here, especially as it relates to physical movement, exercise and expectations.

There are truly a lot of challenges to raising and caring for a special needs individual. In the case of an individual with Down syndrome, these may include physical and mental issues, as well as the whole social acceptance thing. I believe that parents of special needs people may understand as well as anyone what it is like to not be accepted because of the way someone might look. We therefore look beyond the challenges towards opportunities for our children.

Like many of you, our own journey has been challenging, and many times early on, we were not sure what to do. But there is another part of the journey that has been joyous and humorous and has allowed us to laugh, bond as a family, and just plain have fun together. As I say later in this book, you just cant make this stuff up!

We are Christian people who have asked for the Lords guidance throughout. We do know that God was and is at work here. Each chapter, therefore, ends with a hopefully pertinent Bible verse, then a section entitled For Consideration. These are things for you to think about that are relevant to the chapter story and possible actions to follow up on. If you are not a Christian or have no religion at all, I will wager that you can still enjoy this book, and hopefully gain some good counsel from what is presented here. Warning: some of these stories are almost PG.

Bible Verse: Do not grieve, for the joy of the Lord is your strength. Nehemiah 8:10

For Consideration: To encourage you on the joyful journey and give you a little idea of what might lie ahead, please allow me to share some true stories of the downright joy that Karen, myself, and our entire family have felt with our son Jacob.

Chapter 1

The Lovely Lady

A very attractive and tanned blonde with nice legs is strolling on a sultry, warm summer night, making her way through a crowded bar. She is recently divorced and her sister Nancy has dragged her out to have some fun with their cousin Audrey. Karen had been married for several years, but things had not worked out. She was feeling blue. So she figured, What the heck. What could possibly happen? Turns out this night would end up changing Karens life profoundly, forever and eternally, and in ways she could never imagine or dream about.

Earlier in her life Karen would have welcomed the invitation. She and Audrey had done some mischief together. They were friends as well as cousins. That night, Nancy knew her sister needed to relax a bit, so she insisted that Karen join her with Audrey and some of Audreys coworkers from St. Vincent Charity Hospital.

I was one of Audreys friends from work who they were meeting that night. I had never met Karen and did not even know Audrey had a cousin. I had been single for about five years and wanted to meet the right person.

On that beautiful summer Friday evening, we were meeting in the Flats. In the early 1990s the Flats in Cleveland was the place to be, especially in the summer. Bars on both sides of the river, pleasure boats running up and down and across the river, streets filled with thousands of young and not-so-young adults having fun. We were at the Powerhouse, maybe the coolest, or hottest, and most crowded bar in the Flats. Summer weather, hundreds of people, nice-looking ladies. Great place to be if you were single.