Against the Odds: Inspiration for Parenting Children with Special Needs

By Delia D. Samuel Ph.D.

Being a parent is a hard job, especially when the children are young. Being a single parent makes the relationship more complex and time-consuming. Finally, coping with children with disabilities makes this even more demanding. Samuelauthor, professor of mathematics, trained singer, and single mother of two sons diagnosed with autismstates that raising them well is possible and can bring a lot of satisfaction.This memoir/self-help book is full of optimism and exclamation points....The parents role never ends, apparently, but with patience, individual attention, love, organization, and adjustments to expectations, daily life is manageable, even enjoyable.
-The US Review of Books

According to a U.S. census study, about 20% of U.S. residents cope with special needs. Parents and caregivers who are faced with this issue of special needs experience feelings of denial, confusion, guilt, anger and hopelessness. Caring for special needs individuals is not an easy task, but it is possible. It is a journey that brings out the best in any individual who has chosen to embrace that challenge. The author gives the details of her journey as a mother of two boys with multiple special needs and illustrates the strategies that she has used to deal with the daily struggles that life presents her as she mothers her two children. She explains how acceptance of this challenge has led to it being the greatest blessing of her life. Against the odds is an inspiring narrative that will provide guidance for parents and caregivers who are searching for new tools and insights into how to raise children with special needs and for those who want to gain a deeper understanding of this important subject.

• Language: English
• Publisher: Trafford Publishing
• Release date: Jan 7, 2016
• ISBN: 9781490766829

Delia D. Samuel Ph.D.

Delia D. Samuel is a mathematics professor and has taught mathematics at colleges and universities in Minnesota and St. Lucia. She holds a Master of Philosophy degree in computer science, a Master of Science degree in mathematics, and a Doctor of Philosophy degree in mathematics. She is also the author of four mathematics textbooks written for middle and high school students. Dr. Samuel has two sons, who are both on the autism spectrum. They live together in Fridley, Minnesota.

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Copyright 2016 Delia Samuel.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the written prior permission of the author.

isbn: 978-1-4907-6680-5 (sc)

isbn: 978-1-4907-6681-2 (hc)

isbn: 978-1-4907-6682-9 (e)

Library of Congress Control Number: 2015921406

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TABLE OF CONTENTS

Chapter 1 MY JOURNEY: BEGINNINGS

Chapter 2 MY JOURNEY TO ACCEPTANCE

Chapter 3 DON’T YOU DARE GIVE UP!

Chapter 4 SMILE—IT’S GOING TO BE OKAY

Chapter 5 THE EARLIER THE BETTER

Chapter 6 SURROUND YOURSELF WITH POSITIVE PEOPLE

Chapter 7 BE AN EARLY RISER

Chapter 8 PLAY, PLAY AND PLAY SOME MORE

Chapter 9 FIND TIME TO RELAX

Chapter 10 BE ORGANIZED

Chapter 11 BECOME A CHILD AGAIN

Chapter 12 COPING WITH NEGATIVE ATTENTION

Chapter 13 TAKE TIME-OUTS—YOU WILL NEED THEM!

Chapter 14 BECOME AWARE

Chapter 15 TALK TO YOUR CHILD ALL THE TIME AND EVERYWHERE

Chapter 16 SOOTHE YOURSELF AND YOUR CHILD IN THE BEST WAY

Chapter 17 SAFETY FIRST

Chapter 18 UNCONVENTIONAL METHODS TO DO THE USUAL THINGS

Chapter 19 AFFIRM! AFFIRM! AFFIRM!

Chapter 20 LIFESAVERS

Chapter 21 UNCONDITIONAL LOVE

Chapter 22 YOU ARE A GOOD PARENT

Chapter 23 THE POWER OF GRATITUDE

Chapter 24 TRAVELLING OVERSEAS

Chapter 25 THE ART OF PATIENCE

Chapter 26 OUR TALENTED CHILDREN

Chapter 27 ILLNESS

Chapter 28 SENSORY PROBLEMS

Chapter 29 SOME STRESSORS: CHANGE OF ROUTE AND THE BARBER

Chapter 30 HAVE A CAN-DO ATTITUDE

Chapter 31 START WITH WHAT YOU HAVE

Chapter 32 MEET THEM WHERE THEY ARE

Chapter 33 THERAPY

Chapter 34 PRACTICE DOES MAKE PERFECT

Chapter 35 NORMALIZE YOUR LIFE

Chapter 36 DO LESS AND THEY WILL DO MORE

Chapter 37 NEVER BE AFRAID TO APOLOGIZE

Chapter 38 A TOUCH OF MANNERS

Chapter 39 MY CHILDREN ARE MY TEACHERS

Chapter 40 ALWAYS LET THEM KNOW

Chapter 41 TAKE THE TIME TO SMELL THE ROSES

Chapter 42 VOLUNTEERING

Chapter 43 TAKING CARE OF ME

Chapter 44 PRAY

Chapter 45 AND SO IT CONTINUES …

Preface

I am Delia Daria Samuel, a mathematics professor in the Minneapolis Area, but most importantly, a single mother of two boys, Joseph and Paul, who both have special needs. This book gives you an insight into my journey as a mom to my two wonderful boys. The journey has been far from easy; I consider it to be probably the most challenging situation with which I have ever had to deal. But, despite the difficulties, it has been rewarding.

When I was first confronted with the news that both of my sons had special needs, I was bewildered, angry, and frustrated. I did not understand it and I wished that I did not have that life. I did not feel that I had the strength to cope with such a difficult situation. I thought that I did not know how to be a mother to my sons and cater to their needs. But the fact remains … I was chosen.

This book explains how I moved from a state of anger to a state of acceptance, and then to a place where I now consider this challenge to be a blessing and probably the best thing that has ever happened to me. I will share with you how I care for my boys on a daily basis. I will show you how I continue to give them the best care possible as a single mom, working full-time and part-time jobs and constantly on the go. I will explain to you how I kept my head above water and kept smiling regardless of the challenges we faced. I will tell you the valuable lessons I have learned from this experience.

This book is written for you, parents of special-needs children. I want you to know that I empathize with you. It is not an easy road, so kudos to all of you. You are powerful, super men and women, and I treasure you. This book is also written for special-needs caregivers, teachers, aides, siblings, or any person who comes into contact with individuals with disabilities. And finally, it is addressed to all parents, because you too will discover what I encounter as a special-needs parent and how I have learned to manage the challenges I face in the best way. Against the Odds is for the parents who have recently discovered that their precious child has special needs. I understand the feelings of confusion, doubt, and uncertainty that you are experiencing at this point, and I am confident that what I share in the following pages will point you to new ways of coping and caring for your children and yourself. Against the Odds can also touch everyone, because there is much to learn about how to cope with life’s challenges, from my experiences.

The strategies provided in this book are by no means exhaustive. No doubt, many parents may have gone through these same experiences and dealt with them in different ways. The approaches presented here are methods that have worked for me, techniques that have produced positive results. My expectation is that this book will open the minds of all readers and give them a deeper awareness of and appreciation for parents of children with disabilities.

My goal is to encourage people to understand that in spite of the many difficulties faced by parents of children with special needs, we are blessed individuals. I want you to be aware of the strength and the love that is inside every one of us and to know that the victories that you wish for are possible.

Dedication

This book is for you, my darling Joseph and Paul,

for making me a better mother, a better person, and for teaching me to love unconditionally.

I love you so much, my dear boys.

I also dedicate it to my mother,

who was the first person to teach me how to love

and what it takes to be a good mother.

I love you, my mam.

Acknowledgements

T his work could not have been accomplished without the love and assistance of so many people. I want to thank my dear mother who was the first to teach me the lessons of good parenting. I have learned so much from you. Thank you for teaching me to love and to give of my all and my best to my children. I thank my two sons for teaching me so much about life and love. You have blessed me abundantly and I am so grateful that I was chosen to mother you. I love you so much with all of my heart. I want to thank Dr. Donnalin Constantin who was the first to read the first draft of the manuscript for this book. Thank you for your love, support, endorsement and for encouraging me all along the way. I thank Hope, Katy, and Richard for proofreading and editing this work. You made it possible. Richard, you were the first person to encourage me to write again and I am so thankful. Lucretia, thank you for your efforts and ideas for designing the cover of this book. Thank you to my family for supporting me and cheering me on. I am so grateful to have you. To my friends, confidante, and loved ones who have inspired me, to those who were there for me throughout, especially at the lowest points on my journey, who loved me and believed in me, to those who threw out a lifeline to me, I thank you with all of my heart. I am so blessed to have you in my life. I also thank Trafford Publishing for the publishing of this book.

Finally, I thank the One who has given me all the love, strength, hope, resilience, and compassion to mother my sons and be the best Delia that I can be. You, dear God, have blessed me with two beautiful children with special needs and I am so very grateful that You did. You have richly blessed me through my children and I am immensely grateful. Thank you for bringing experiences to me that will help me to continue learning and growing and to be the best parent that I can be.

The victories that I wished for are being realized!

I love you all.

Chapter 1

MY JOURNEY: BEGINNINGS

"I know God will not give me anything I can’t handle.

I just wish that He didn’t trust me so much."

~ Mother Teresa

O n February 28, 2006, I gave birth to a beautiful, healthy boy, Joseph, by an emergency C-section after enduring twenty two hours of labor. The laborious birth was preceded by an uneventful pregnancy: I was a healthy woman who ate well, exercised daily, gained a sufficient amount of weight, was very active, and was generally given a healthy prognosis by my obstetrician-gynecologist. Subsequent to birth, Joseph remained in the Special Care Unit at the hospital for four days due to breathing problems associated with reflux. The first year of Joseph’s life can be described as normal despite the many sleepless nights we had to endure because of his reflux and his inability to consume large quantities of food at any one time. Thus, he had to be fed frequently throughout the day and night. I was a sleep-deprived mother, but all in all, I was able to handle mothering Joseph during the first year of his life—until July 2007, when he attended day care for the first time.

It was at that day care center when one of his teachers pointed out that Joseph was so much like a boy she had seen in a movie. The boy had autism. The teacher then suggested that I read material about autism so that I could understand my son better. I met that suggestion with denial and anger: How dare this woman even suggest that my beautiful, bright boy had autism? Isn’t that a disability?! My son is certainly not disabled! I refused to acknowledge that possibility and made it a point to ignore anything that teacher had to say to me. She knew nothing about my son! Subsequently, the directors of the day care invited me to a meeting. They confessed that they did not have the expertise or the staff needed to care for Joseph. He needed more than they could possibly give. They recommended early intervention. I broke down and wept out of sheer bewilderment. How could my son have autism? Where did it come from? I refused to acknowledge that possibility; however, I agreed to have him tested. I reluctantly withdrew him from that day care, but enrolled him into another one because I wanted to prove that there was nothing wrong with my son. The end result was the same. Shamefully, I had to again withdraw Joseph from this other day care because of his teachers’ inability to cope with him. They labelled him as different and needing more care than they could provide.

The test results did indeed prove that my son was different from other children and that he had autism. We subsequently enrolled him in a special education class and he began attending speech and occupational therapy sessions. I stepped up and did all that I could do for my son. I saw this as only a phase that he would eventually outgrow and would again be like any normal, developing boy.

Then, on September 13, 2008, my second son, Paul, was born three weeks early by a planned C-section. This pregnancy was again a normal and healthy one, except for a two-week stint of pneumonia, which I developed during my first trimester. I was treated and healed. I looked forward to having a healthy baby boy who would have none of the deficiencies that my firstborn supposedly had. I had positive thoughts throughout my pregnancy and felt certain that my second born would be a gifted, normal boy. He would be a force to be reckoned with, I thought. I was in for a rude awakening.

Paul was born with a surprisingly low birth weight of 5 pounds 5 ounces. His body was also covered with a pigmentation from his shoulders down to his feet. I was told that this was a birth mark. Others felt that it would eventually fade away. I thought that this discoloration of the skin would completely disappear after a few weeks. I was wrong. This pigmentation is still very visible on Paul’s body. Paul also failed the newborn hearing tests and subsequent hearing tests. From birth, he constantly vomited everything he ate, which, of course, did not result in much of a weight gain for my son.

The early intervention people were again called in. The ritual began … again! I knew it even before I was told. Paul had autism—even more severe than Joseph’s. I was shocked and confused. I had no idea where this came from. I examined my genealogy and realized that no one in my family had special needs. I analyzed every day of my pregnancy with Paul. Did I take care of myself as I should have? I questioned the physicians, Did I do something wrong? only to be told again and again that none of this was my fault. However, I still could not understand. Then, I felt guilty. I believed that God was punishing me for all the wrongdoings I had committed throughout my life. However, in punishing me, He was also punishing my two boys who had to cope with their own deficiencies throughout their lives. He was punishing Paul who had suffered tremendously from birth. I was angry. I was angry because I did not understand why I was chosen. Why me? And why two children with disabilities? If I had to have a child with special needs, why couldn’t I have just one? I am sure I could have learned just as much from one such child. I was angry and frustrated at the tiredness that I constantly felt. At that time, I was completing a doctorate in mathematics and I was exhausted from the daily struggles of taking care of my sons and from burning the midnight oil working on my dissertation. I was angry because of the sufferings my children had to endure. I was angry because I felt so alone. I was recently divorced and had no family living in Minnesota. I felt unsupported and isolated. I