Excerpt from Ken’s soon-to-be-released 4th book, Gifts of Autism and Alzheimer’s: Stories of Unconditional Love and Self-Determination

INTRODUCTION

For over 40 years, I have worked as a consultant, CEO, and front-line staff member in an educational, medical, transportation and residential capacity, and I have had the privilege of being a partnering change agent in the field of disabilities. Our field has evolved from being controlling and dismissive of the preferences of the individuals we serve to being more person-centered and empowering for the individual.

I have asked Nancy Reder to co-author this book. Nancy is a retired R.N. who co-presented workshops with me in the 1980s. She has 32 years’ experience with persons with special needs and a background in geriatric nursing caring for persons with Alzheimer’s disease.

While observing the Alzheimer’s journey of my own mother, I saw some similarities in the characteristics of those with autism and those with Alzheimer’s.

The time I spent with my mom while she was at home, in assisted living, and in nursing homes culminated in my fervent desire to explore the lives of people with Alzheimer’s and autism and on their effects on their families and on the community.

This book is based on my informal research as a worker in the field of disabilities and as a son caring for an affected parent: The Gifts of Alzheimer’s and Autism: Unconditional Love and Self Determination.

Nancy and I have asked people to share their stories in our book. I emailed potential contributors the article I wrote about my mother’s Alzheimer’s that inspired this book.

This book is intended for parents whose children have just been given an autistic diagnosis and for families and loved ones of those with Alzheimer’s. But we believe others can benefit from it as well: perhaps you are on the autism spectrum or have been given the Alzheimer’s diagnosis yourself. Maybe you are a teacher, a nurse, or a dedicated employee in an assisted living or nursing home. Maybe you just like inspirational stories or are on a quest to discover your life’s purpose!

Life is about relationships! Life is about change and learning how to go with the flow with ease and joy instead of with resistance, stress, fear, and despair!  Relationships are about connecting, compromising, receiving, sharing, giving, and communicating.

This book is about the power and value of unconditional love, music, theater, art, and self-determination. It is about the power and love of God, life, the universe, faith, patience, solitude, trust, prayer, meditation, and nature!

It is our desire that you will be inspired and uplifted by all of the inspirational stories of love, tears, joy, pain, humor, self-determination, and human compassion.

Sadly, much fear, trauma, horror, and despair are associated with the two conditions which are the focus of this book. With the recent increase of autism and Alzheimer’s, it is safe to say that most people will have a friend or family member with one of these challenges (or they themselves are faced with one of them) during some point in their lives. We have chosen to focus on helping others to make peace with whatever challenge they inherit or develop—and to find some positive aspects of it.

There is definitely no shortage of books on the anguish and despair and fear surrounding autism and Alzheimer’s. Conversely, our book invites you to embark on your own spiritual journey, a quest, an adventure for self-discovery and for excavating some of your most hidden fears, feelings, desires, or resentments. Moreover, we invite you to discover your unknown inner strength, courage, faith, trust, love, equanimity, passion, and dauntless joy!

This book is about learning how to trust life and about connecting with a higher power when dealing with undesirable circumstances. I believe that life is always for us if we get out of our own way. Life is meant to be good.

What can we learn from autism and Alzheimer’s? Autism can teach you how to trust and let go when you need to, for example, when you are that anxious parent sending a child to school or to live on his or her own in a group home, in a supported living arrangement, or on their own independently. For parents of children with autism, there can be dignity in some risk, in the ability to allow their children to take steps toward independence.

Similarly, Alzheimer’s can teach you how to let go when you are required to become your parent’s caretaker as you send him or her off to a day care center or to a residential arrangement.

The eternal lesson for all of us is to trust the processes of “letting go” and of death for not only our loved ones, but also for ourselves.

I believe most of us—especially in the western world—are afraid of death. Consequently, I believe for some, the long good-bye process of death may actually be a gift for anyone who is themselves afraid to die or afraid of relinquishing the emotional holds on loved ones with Alzheimer’s. As far back as I can remember, even as a small child, I had an irrational fear of my mother dying, perhaps because she was more protective of me than she was of my siblings because of her difficult pregnancy. She had lost children before through miscarriage, and the doctor warned her either that she may lose me or that I could be disabled. Fortunately, I was born with only minor learning disabilities, aphasia, and speech challenges. Finally, after receiving speech therapy, I was able to communicate better (except for occasional aphasia episodes). It is ironic to me that for much of my career I was paid to conduct workshops and seminars nationwide using the one skill that was my childhood limitation!  (However, I began noticing in my late 50s that my aphasia and short attention span are sometimes more pronounced.)

I believe that because my mother was so afraid of losing me, I picked up some of this anxiety, even in utero. I believe that because of her profound fear and my own sensitivity, we developed a kind of mutual separation anxiety. However, my fear of death has greatly reduced during the spiritual introspection and growth of my adulthood. I have learned and accepted that when we let go and trust, God and life give us opportunities to love and fulfill ourselves and others.

Sometimes unexpected events and circumstances require that we delve deep within to realize how powerful we are when we consciously connect to our inner divine partnership with God. I have learned from my spiritual lessons that we get what we focus on, so it is important to sift through your current life for everything you have to be thankful for.

When I find myself in a challenging situation, I affirm to myself that everything always works out for me. It shall be revealed to you in your life’s experiences that when you focus on the positive aspects of your life or of the situation and letting go of the negative, that your life or the situation will improve. Change the way you look at things and the things you look at will change.  Consequently, it is imperative to maintain a positive attitude!

When I finally made peace with the physical disappearance of my pre-Alzheimer’s mom, I became receptive to embarking on a new magical relationship and journey with my “new mom.” I consciously shifted my awareness to the positive aspects of “new mom.” In many ways, my mother was more relaxed, not worried, at peace, and at times in bliss!  There were those occasional “sundowners”—times of agitation—but for the most part, she was a much happier person. My new-found relationship with my mother inspired me to write this book.

Finally, this book is also about the power of love and the importance of establishing trusting and empowering positive interactions and environments for our loved ones with autism and Alzheimer’s. By applying these concepts and techniques with the goal of empowerment in mind, I helped facilitate many success stories for individuals with severe behavioral disabilities, many of whom had autism, and many of whom were restrained most of the time to prevent self-injurious life threatening behaviors. Using a common sense approach and by establishing trust and rapport with these individuals, I observed a reduction in their adverse behaviors, and in some cases, the elimination of certain behaviors.

These successes prove that there is much strength in gentleness, unconditional love and acceptance, and valuing all beings just because they exist.

Whether the individual with Alzheimer’s is you yourself, or whether your loved one has Alzheimer’s or autism, it is of utmost importance that you make peace with your situation.  It is beneficial to release your bitterness and your negative judgments and become whole. Many who are reading this book may be playing the role of caretaker, either directly, professionally, or for a dear friend. It is imperative for the whole family or work place to maintain its wholeness!  We cannot take care of others if we do not take care of ourselves. I believe that most illness is the result of self-rejection, long-term anger, chronic stress and resentments, or resisting self and life. The English word for healing originated from the German word hailjan, which means to make whole. So eventually after going through either the loss of a normal child in the case of autism or the shock of an Alzheimer’s diagnosis, it is healing to embrace yourself and unconditionally accept and make the best of the situation. Through this book, we will be discussing the power of nurturing self and others!

As I have become what our culture calls “a senior citizen,” I have realized that no matter what life brings, no matter how grim, disparaging, devastating, horrific, or gloomy, there is a broader, grander purpose, or plan, and always lessons, and sometimes even further opportunities beyond what I had realized or imagined.

As Jane Beach wrote in the March 2013 Science of Mind magazine:

Appreciation lifts us out of despair because it is impossible to be truly grateful and to be unhappy at the same time. It turns us away from what’s wrong and toward what is right. We ask ourselves, “What aspect of my divine nature can I bring to this situation—peace, acceptance, love, wisdom?” The more we stay centered on the spiritual gift that is emerging within us, the more quickly the problem dissolves![1]

Finally, I would like to end this introductory chapter with passages from and thoughts on my favorite book about Alzheimer’s, I’m Still Here by John Zeisel, Ph.D., beginning with the following:

A person living with Alzheimer’s is first “a person,” and only then someone with a disease. The way the world sees Alzheimer’s today is that a person is almost totally lost once he or she receives an “Alzheimer’s diagnosis”–lost both to themselves and to those who love them. An Alzheimer’s diagnosis is seen as an Alzheimer’s “sentence.” But this just isn’t so. Throughout the more than decade-long progress of the disease, the person is crying out, “I’m still here!” We all need to start hearing that cry before it fades away completely.[2]

As Dr. Zeisel asserts, we must help reframe the historically fatalistic perspectives of autism and Alzheimer’s and begin to provide some positive, constructive hope for those individuals and their families who must live and die with these challenges.

(Another book I highly recommend is The Myths of Alzheimer’s, by one of the best-known Alzheimer’s experts in the world, geriatric neurologist Peter Whitehouse. This book not only eliminates much of the erroneous information and propaganda surrounding Alzheimer’s, but it provides a more humanistic view of the condition and encourages hope for the aging process in general.)

When I conduct sensitivity workshops throughout the country, I talk about families having to experience the loss of a normal child: many parents who have children with autism have to adjust their expectations for their children. Similarly, I had to finally accept the loss of the relationship I used to have with my mother. As Dr. Zeisel states:

… he is not that person any longer. Neither can our relationships be the same. While the person still cares for us and continues to love us and we them, we must have new expectations and build a new relationship. The first step is to discard old expectations and role relationships that limit our ability to see the person and relate to him or her in a new way.[3]

May this book encourage you to focus on the abilities of the people in your life who have Alzheimer’s or autism instead of the disabilities and so-called deficits—and instead value, empower, and enjoy your connection with them!

As Dr. Zeisel states: “Love is a universal language understood far into the illness, even to the end of life. If everyone involved with the illness learns to say, ‘I love you’ to the other, the other person will understand and be more present, and relationships can grow.”[4]