He Ain't Heavy (He's My Son) Part II: The journey continues...

By Dana R. Jones-Meggett

Find hope and inspiration for a more inclusive world with this thought-provoking book, He Ain't Heavy (He's My Son) Part II.

 

Thirteen years after her first

• Language: English
• Publisher: DTA
• Release date: Mar 22, 2022
• ISBN: 9781936042074

Book preview

HeAintHeavyHesMySon_CoverFront.jpg

Praise for He Ain’t Heavy (He’s My Son) Part II

Encouraging and a true picture of a parent’s love and the lengths to which she’ll go to advocate for her child. This book provides guidance and advice that I frequently share with families facing similar challenges. It’s with great enthusiasm that I endorse Part II, in which we continue to learn about ASD and follow their journey of faith, love, hope, and perseverance.

—Dr. Myckieala Cooper

I highly recommend this book to all families as well as autism professionals for inspiration and early intervention. This book is definitely a great resource for autism families and professionals.

—Meochia Clayton, Autism Parent and Advocate

A must-read for those caring for a loved one with a disability. It was riveting, inspirational, and touches deep within your soul. Do we all have a disability? Read this book and find out!

—Anita B., Veteran

"After reading He’s Not Heavy (He’s My Son) Part I in one sitting, because I literally could not put it down, I could not wait to read Part II. Although I expected the book to pick up right where it left off, I thoroughly enjoyed this new journey of being able to look at the ills of this world through the lens of a victorious and God-fearing mother."

—LaShon Fryer, MBA, Human Services Professional

"He Ain’t Heavy (He’s My Son) Part II is an outstanding, insightful, and inspiring read about autism, disability, and associated stigmas. The author shares her impassioned research and perspective as a parent of a child on the autism spectrum. This book, and the author’s story, left me with a commitment to know more and do more to support individuals with an autism spectrum disorder and their families."

—Gene Barlow, Community Advocate

To address the challenge of stigma, Dr. Jones-Meggett uses her education, experience, and professional skills to not only increase acceptance of those with disabilities into society through awareness but also guide further investigation into the thoughts and beliefs that grow social avoidance, stereotyping, and discrimination. She is a gifted writer.

—Sonia Blyther, MA, Professional Counselor

Very informative and easy to read. I feel that this book will help so many—in particular, people of color with children on the spectrum. The insight on how we need to reframe how we view children and young adults on the spectrum is needed. The book provides encouragement along with the resources any family starting out and going through navigating a new path and way of life after learning their child is autistic will be a valuable asset for a long time. Well done!

—Tanika Pierce, Parent-Advocate and Air Force Veteran

It causes people to empathize and see themselves in other people’s shoes. The reader will see that, by and large, much more advocacy is needed for individuals on the autism spectrum or with disabilities. This book leaves one with hope—hope in believing that we as a society could one day fully embrace all of God’s children regardless of their physical or mental disabilities.

—Daphne, MS, State Human Services Professional and MSgt, USAF Retired

I was floored by some of what I read as the author spoke very eloquently as to how she maneuvered through this difficult time in her life and moved as if she were fine! The author made me feel what she was going through yet not pity her but cheer for her and and her son! She made me feel there is always hope on the other side of the trouble. Keep doing what you’re doing and teaching in the way you do!

—Aliya Jenkins, MBA

As I think of the song ‘Mary, Did You Know?’ that’s usually heard during Christmas and speaks to the greatness that Mary may not have known what her baby boy would be responsible for, I use those lyrics to say, ‘Dana, did you know that your baby boy would change the hearts and minds of many and give hope and faith to those who didn’t have any?’ You and Taki will change the world!

T.A.K.I.

To

All

Know

Inspiration

—Anonymous

© 2022 by Dana R. Jones-Meggett

All rights reserved. This book or any portion thereof may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review.

Published in Maryland by DTA Books.

Scripture quotations are taken from the King James Version (KJV) of the Bible. Public domain.

The health-related material in this book is for informational or educational purposes only. It is not intended to cure, treat, or diagnose any condition. You should not rely on this information as a substitute for the advice of qualified medical professionals. Please consult them regarding the pursuit or applicability of any ideas, opinions, or suggestions in this book. The author is not responsible for any loss, damage, or injury arising for any information or suggestions in this book.

Library of Congress Control Number: 2021924338

ISBN 978-1-936042-07-4 (ebook)

ISBN 978-1-936042-08-1 (paperback)

ISBN 978-1-936042-09-8 (hardcover)

This book is dedicated to my son, Taki.

Table of Contents

Author’s Note

Autism, Disability, and Stigma

Everything but the Kitchen Sink

Transition to Adulthood: Twenty-One Pairs of Shoes

Coping with Ambiguous Loss

Pandemic Reveals a Pandemic

Black Disabled Lives Matter

The Bar Has Been Raised

Human and Divine

Acknowledgments

About the Author

Bibliography

References/Notes

Resources

Author’s Note

I

t is hard to believe that I wrote the first version of this book nearly thirteen years ago. It is cliché, but time does fly. My son and I have been through a lot since then. It seemed imperative that I finish writing this book now to add to our story of how it feels to raise a child of color who also has a disability during his transition to adulthood, during a pandemic, and during the protest for equality. The first book chronicled his life from conception to thirteen years old. This book is a Part II but not a second edition, as it is seen through an expanded lens chronicling from my son’s age of thirteen years old to where we are now that he is almost twenty-six years old. I hope that by sharing our journey, we continue to encourage and inspire you to hope and dream new dreams no matter what your situation is in life.

—Dana and Taki

Chapter 1

Autism, Disability, and Stigma

My son, Taki (pronounced TAH-kye), was diagnosed with autism on February 9, 1999. I had never heard of autism before my son’s diagnosis. The Centers for Disease Control and Prevention (CDC) defines autism spectrum disorder (ASD) as a neurodevelopmental disability that impairs certain areas of the brain affecting communication, social abilities, and repetitive behavior. Individuals on the spectrum often have co-occurring conditions, like psychological as well as physical ailments, that are impacted to varying degrees.

Autism is increasing faster than any other developmental disability. When you think of developmental disabilities, think in terms of milestones. Although babies and children grow at their own time and pace, there is an expectation that certain indicators of their growth occur within a certain timeline.

A decade ago, the estimated rate of ASD in the United States was 1 out of every 150 children. It is now estimated to be one in fourty-four, and the vast majority are boys. The number has increased exponentially, and there is no person or country immune from it. Worldwide between 1 and 2 percent of the population have an ASD.

While much more awareness exists and diagnoses and definitions have been streamlined to no longer use the terms Asperger’s syndrome or pervasive developmental disorder (PDD), this does not explain the continued climb in autism. By some reports, at least a half a million people may be diagnosed with autism within the next decade.

The way ASD presents itself is individualized, and the cause remains unknown; however, the environment has been strongly implicated as well as genetics.

Neuroscientists have been studying the rise in ASD and other childhood illnesses in the past decades. It is not believed to be due to genetic changes because of the mere fact that not enough time has elapsed for that to be the path. It is believed to be due to environmental factors. Environmental factors, or toxins, are poisons that we breathe, eat, or drink. Toxins are harmful to our brain and body, including the immune system. At birth, over two hundred chemicals are found in the umbilical cord of babies. Babies are exposed to food dyes, plastics, insecticides, and pesticides that lead to sickness and disease, including cancers. Back in the 1970s and perhaps earlier, it was common that lead paint, lead pipes, and asbestos could be found in old buildings, apartments, and houses. Toxins continue to be studied in cell towers and landfills.

Additionally, the United States Environmental Protection Agency (EPA) has reported unfavorable findings on the effects of pesticides, dioxides, bisphenol A (BPA), mercury, and other toxins that can cause a host of neurodevelopmental problems in the prenatal stage and beyond. In their America’s Children and Environment (ACE) report, direct correlations are made between children’s health and the environment.

Similarly, researchers from the Harvard School of Public Health and Brown University examined forty studies with sixty different birth-related conditions involving the environment, genetics, or other factors. The study linked thirteen areas that resulted in the highest probability of developing autism, including breech; umbilical cord issues; birth injury or trauma; multiple births; maternal bleeding; summer birth; low birth weight; physical birth defects; low five-minute Appearance, Pulse, Grimace, Activity, and Respiration (APGAR) score; ABO blood grouping or Rhesus (Rh) incompatibility; meconium aspiration; feeding difficulties; newborn anemia; and hyperbilirubinemia. Although these factors were noted as risks, no one issue stood out as the single reason. In those same studies, it was determined that factors such as anesthesia, forceps or vacuum delivery, prolonged pregnancy, elevated birth weight, and head circumference were not risk factors for autism.

Relatedly, there are still ongoing discussions about vaccinations as a possible cause of autism. According to the Vaccine Adverse Event Reporting System (VAERS) run by the CDC and Federal Drug Administration (FDA), children under six months old are most likely to have side effects from vaccines. Special uneasiness exists toward live vaccines found in the measles, mumps, and rubella (MMR) vaccination. Likewise, VAERS states that death is a possible side effect of vaccines. It should also be noted that head scientific researchers, doctors, lawyers, and parents who work or have worked for the CDC, other infectious disease organizations, and private practices have testified before Congress and authored books about cover ups when it comes to vaccines.

On the other hand, the American Academy of Pediatrics, Institute of Medicine, FDA, former staff at the CDC, and others have long disputed any connection between vaccines and autism.

If any vaccine has the potential to cause serious illness or death, is it plausible that it could cause a neurodevelopmental disorder such as autism? Is it likely that since autism is a spectrum disorder, there are multiple causes and pathways?

In terms of genetics, researchers have stated that there is a strong correlation between identical twins and autism. I have read and heard from doctors that it is much more likely for a woman to