Ensuing: Events That Follow; Our Reality with Autism Spectrum Disorder

By Beneice L. Butler MBA

Have you ever heard the expression Kids dont come with instructions? Well, try to understand what that really means to a single parent who is struggling with raising a child with autism spectrum disorder (ASD). Rarely do we hear about the reality that accompanies a struggle. The truth is that some parents would just rather not expose themselves or their child by being truthful about their reality on the spectrum. Exposure can open the door to judgment and ridicule, and no one wants to deal with that.

On the other hand, exposure can help others acknowledge and understand your reality; it can also bring about acceptance. Exposing your reality will have people wondering who you really are. No one truly knows your strengths or weaknesses until your reality is exposed. This book is based on the reality of a single parent raising her beautiful autistic daughter. The writers reality is not exactly what most people expect to read or hear.

The reality will give readers a deeper understanding of what parents, families, caregivers, and most importantly, people with autism and ASD actually go through. The reality is not just a challenge; it can be embarrassing, upsetting, and cruel. However, the best thing you will discover is that there is a great degree of resiliency and love like no other. Read it, enjoy it, and respect it because it is more than you could ever imagine.

• Language: English
• Publisher: AuthorHouse
• Release date: Sep 18, 2017
• ISBN: 9781546208976

Beneice L. Butler MBA

Beneice L. Butler, MBA is a mother, a writer, a Financial Consultant, and an entrepreneur. She earned her bachelor's degree in Mass Communications and Journalism with a minor in English Literature at Shaw University in Raleigh, NC. She completed her graduate studies at the University of Maryland, University College with a dual Masters in Business Administration and Human Resources Management. She is a proud member of Delta Sigma Theta Sorority, Inc. Her roots are in Meridian, MS, but she was raised in Fayetteville, NC and currently resides in Charlotte, NC where she is a member of the Autism Society of NC, Mecklenburg County Chapter and she is a solid advocator for her beautiful daughter, Kourtney, who has Autism Spectrum Disorder. Beneice L. Butler 1812 Whispering Forest Drive Charlotte, NC 28270 704-472-5084 [e-mail]

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© 2017 Beneice L. Butler, MBA. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse  09/19/2017

ISBN: 978-1-5462-0898-3 (sc)

ISBN: 978-1-5462-0899-0 (hc)

ISBN: 978-1-5462-0897-6 (e)

Library of Congress Control Number: 2017914456

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and such images are being used for illustrative purposes only.

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Contents

Dedication

Acknowledgements

Preface

Chapter 1 Ensuing - The Early Years

Chapter 2 Ensuing - Transition & Behavior

Chapter 3 Ensuing - The Loss of Employment

Chapter 4 Ensuing - Less Than Best Circumstances

Chapter 5 Ensuing - Isolation & Rejection

Chapter 6 Ensuing - Taking Matters into My Own Hands

Chapter 7 Ensuing - The Other Kid

Chapter 8 Ensuing - The Opinions & Advice of others

Chapter 9 Ensuing - Restless Escapades

Chapter 10 Ensuing - Situational Acceptance

References

About The Author

Dedication

To my beautiful daughter Kourtney Butler, at times, you are like a combat cat…straight from the fiery pits of hell and other times you are as sweet as a kitten. I love you with everything I have within me; even through the meltdowns and moments of rage. I am grateful for the journey we are sharing in this lifetime because it has taught me and everyone around you so much. We have our good and bad moments, but what I’ve come to realize is that when something major happens in our lives, the events that ensue are the ones we remember the most and can learn from going forward.

Acknowledgements

Thank you God for blessing me with the special gift of motherhood; my child is one of the greatest miracles you have given me and my life is another. There are so many things to thank you for but the greatest of them all is the love you have for me and the blessings you’ve bestowed upon me. I am not worthy…Lord, I’m not worthy.

Benjamin L. McDonald and Gloria H. McDonald, thank you for being wonderful parents and my strongest supporters. Thanks for always taking the time to encourage, counsel, teach and push me to do the things others tried to discourage me from doing. When teachers told me I couldn’t, you told me I could. When I didn’t want to write this book, you stayed on me until I completed it. I love you both dearly.

Dr. Uzama Price, thank you for being there for both Kourtney and me. You extended your time, patience, and support…regardless of the hour. Here’s to the times that I’ve locked myself in a dark closet just to talk to you over the phone (L&L). You’ve never judged me for the words that I chose or my mood swings.

Thank you auntie, Marilyn Lee, for all the things you do and those long weekend conversations. I don’t think you will ever understand how much of a blessing you are to me. I can always count on you when I need a good laugh and an ear to listen to me gripe. Thanks for making sure we are ok and having our backs.

To my sisters Trena McDonald and Melissa Little, you both have always been two of the greatest loves of my life. Thanks for helping out with Kourtney over the years. We don’t always see eye to eye, but the love is always there. Thanks for your support and love.

Preface

Merriam-Webster Dictionary defines the word ENSUING as being something that occurs immediately after another event or something that takes place as a result of a sequence of events (Merriam-Webster, 2017). Therefore, I have used the word ensuing to describe events that have occurred as a result of other events that followed particular times and spaces in our lives…in our reality. We, like many others, live our lives on the spectrum…the autism spectrum and there are many events that impact our emotions and the way we function in our daily dysfunction; yes, I did say dysfunction. Throughout this book, I will share with you the many truths and experiences that many parents and caregivers of special needs children rarely talk about. You will also notice the term Love & Laughter or L&L to denote my humor and sarcasm, because not everyone will recognize my humor and some people live life way too seriously. So with that said, I don’t need Child Protective Services (CPS) called on me, I am simply walking it out and talking it out (L&L).

On a more serious note, I also think it’s necessary for others to understand what they don’t see so they can stop judging, discriminating, and assuming. It’s important for others to know that the special needs community still lacks complete inclusion and acceptance. There are all sorts of prejudices in the world, but some are rarely mentioned. My daughter, Kourtney, has Autism Spectrum Disorder (ASD). Both Autism Spectrum Disorder (ASD) and autism are general terms used to describe a group of complex disorders of brain development. (Autism Speaks, 2017). These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors (Autism Speaks, 2017); therefore, no two individuals with autism are truly the alike. They may be similar in personality, but I feel pretty confident when I saying that they are not alike. If you Google the general traits of autism, you may see a few traits that describe your kid or someone you know with autism, while other traits miss the mark completely. In other words, ASD is not a lump sum diagnosis.

In Kourtney’s case, her ASD diagnosis includes Intermittent Explosive Disorder (IED), Mood Disorder (MD), Mild Mental Retardation (MR), Intellectual Disorder (ID), Bipolar Disorder, and Anxiety Disorder. Then there are the symptoms of the unofficial diagnoses that she displays; for example, Attention-deficit hyperactivity disorder (ADHD), and Obsessive Compulsive Disorder (OCD). So what does all of this mean? It means that my daughter has a serious neurodevelopmental disorder which impairs her ability to communicate and interact with others and process information like most people. A lot of times, she displays repetitive behaviors and limiting interests in others and activities; this sometimes causes her to struggle or become significantly impaired in social, occupational and other areas of functioning. Autism Spectrum Disorder is different for Autism because it involves a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD), those complex disorders make up the spectrum part of ASD.

Unfortunately for us, the Intermittent Explosive Disorder (IED) tends to present itself more than her other diagnoses. A description of IED is just the way it sounds. Therefore, at any given moment, my daughter may have explosive outbursts of anger and violence. Her behaviors are often to the point of rage (e.g., impulsive screaming triggered by relatively inconsequential events). In the simplest form, her outbursts are random and may not be triggered by something that actually happens in the present moment. Her outbursts can stem from something she feels is about to happen or something that may have happened at a previous time that I or those around her may or may not have knowledge of. The latter is the most difficult to understand and manage, because I have no way of knowing what she is reflecting on or thinking about. So basically, I may be getting the residuals or the extreme backlash of a situation that someone else may have knowingly or unknowingly provoked. For example, If Kourtney got angry with her teacher hours before coming home and that situation was not completely deescalated or resolved, she may silently reach back to that event and get upset all over again.

Knowing my Kourtney the way I do, I am very careful planning outings…including simple trips to the grocery store. If I fail to prepare her or myself adequately, she will likely have a meltdown or she may initiate a standoff with me and the entire day is shot. Yes, you heard correctly…a standoff. This is when she plants her feet and refuses to move or leave a particular location. She may even refuse to get in or out of a vehicle. These episodes usually involve the police, the fire department, an ambulance or a paramedic team. These are the events that attract crowds of nosey people and a few people who sincerely want to help but don’t quite know how. If I sold tickets to these events, I’d probably sell out. Yes I am being sarcastic, but there is so much that goes on when she shows out or expresses herself in public. The lights flashing from the emergency vehicles, the sirens, the dogs barking and howling, the screaming and cursing, the looks, the stares, and the rude comments are all typical. These occurrences are a lot for her to process and they are definitely over simulating for her; if it’s over stimulating for me, I know it’s too much for her. The lack of compassion that the general population shows when it comes to our special needs children, teens, and mentally challenged adults can be quite ridiculous.

Over the years, I have come to realize and embrace the fact that raising a child with special needs is not a task that God entrusts everyone with; yet, there are also times that I wish HE would not have trusted me as much as HE did. Let me be perfectly honest, when someone tells you their story they don’t always tell the whole truth. The truth is sometimes embarrassing, hurtful, and very hard to explain. Some people just prefer not to hear the truth, because they feel as though you complain too much or want their help with a situation that they know nothing or very little about. In some cases, time tends to stand still for some of us because we are struggling within a situation that we can’t seem to find the right answers for. Meanwhile, other people continue to live their normal lives each and every day. What is a normal life? Great question! In my opinion, a normal life describes a person’s ability to be able to do day-to-day activities without interruption or interference of extreme and chaotic events. For example, if you need to go grocery shopping and you’re able to get to the grocery store, get your food, pay for your food, get back in your car, and drive back home…things are pretty much normal." However, if you find yourself having to redirect a situation or de-escalating someone’s behavior 90% of the time, prior to even leaving home (if you are able to leave home) then you have a problem.

Have you ever been in a situation where you’ve run out of food, because you cannot leave your home due to a chronic crisis? If you’ve answered yes to that question, regardless of what the reasoning may have been, then you are not living a normal life. I think there are a lot of people taking their freedom for granted and it makes me angry when I hear someone whining about how lonely they are. I would love to relive my lonely years. Give me an evening alone with a good move, some wine coolers, and some sushi. Please tell me that I can go to the gym, three nights a week, to burn off some fat and blow off steam without someone wondering where I am and when I’m coming back to pick up my angry teen.

The word ENSUING allows me to share our truths in a way that depicts a history of action and reaction…the roll and the tumbling dice. Therefore, this book has several purposes. I am writing this book because I am a loving, but often frustrated, single parent of an autistic child who is on the spectrum. I am writing this book to vent those frustrations. I am writing this book, to let others know that it’s ok to be upset sometimes and that someone understands. I writing this books because someone needs to hear that they are not the only one in their situation, but most importantly, I am writing this book because I love my daughter, and I want to honor her though acceptance and ownership of our truths. The word acceptance describes how our journey has evolved from me initially being embarrassed by my daughter’s behavior and diagnosis to embracing what is raw and unique about her and getting her the help she needs. These are our truths; I don’t plan to sugar coat anything because that helps no one. You will read this book and have several emotions about our reality. At times, you may laugh, cry, and even hate me for my candidness and display of tough love. You may like this book or you may hate it, but honestly speaking…you can always close the book and put it down.

Just so you know, when my child was initially diagnosed with Autism Spectrum Disorder, I was devastated! This is something you probably hear most parents say who are in this situation. Unfortunately, what you don’t hear is the truth that ensues… the events that follow? I’ve read a few books written by parents of special needs children and it seems like there is a pattern. The writer generally starts off being as honest as possible but as you continue to read their book, you notice how they attempt to portray themselves as the perfect parents. It’s almost like they have an unofficial degree in raising special needs kids; it almost makes me want to ship Kourtney straight to them. As you read their books, you’ll see how they will go from the diagnosis and discovery stage and tell you how devastated they were. They will describe their experience as being a bit chaotic, but then they switch it up and start writing about how they got a handle on things and then they’ll start giving advice. Now I’m not trying to say that everyone’s situation is like ours, because some people are able to find the resources they need to help manage their situation. Indeed, let’s keep in mind