The Gifts of Autism and Alzheimers:
Stories of Unconditional Love and Self-Determination
by Ken Routston & Nancy Reder R.N.
From Foreword By Raun K. Kaufman
Once you read this book, you will never be able to unread it. And trust me, that’s a good thing. It’s a good thing because it means that you will never be able to see only one side of autism, Alzheimer’s, and many other seemingly tragic diagnoses and conditions. You will no longer be able to sustain the idea that these challenges can only be seen as unmitigated hardships and unsolvable conundrums. You’ll have a difficult time maintaining the feelings of hopelessness so deeply embedded in our culture. You won’t view fear or sadness as the only human responses to having a loved one diagnosed with autism or Alzheimer’s. And it will no longer be possible for you to be able to look at someone you care about with neurological challenges and simultaneously think to yourself, “There’s nothing I can do to meaningfully impact my loved one’s condition.”
When you finish The Gifts of Autism and Alzheimer’s, the title, which might seem preposterous to some, will be fact for you. Of course, no one sits around wishing for their child to have autism or their parent or partner to have Alzheimer’s. And this book certainly doesn’t ask you to do such a thing. But once someone you love already has either of these diagnoses, this book will open your eyes to see the gifts and the possibilities within that person’s challenges—and in so doing, to be maximally helpful to that person.
From Chapter 5: The Gifts of Art and Music
Music anchors us to our past and to that of previous generations. How many of you can remember vividly where you were and what you were doing when you hear a certain song? Smells and nature are likewise hardwired and anchored to memories of our past. As Dr. Zeisel says:
Art touches and engages the brain in a more profound way than other activities. Music, painting, sculpture, comedy, drama, poetry, and the other arts link together separate brain locations in which memories and skills lie. The brain systems affected in this way are therefore called “distributed.” Music, for example, touches parts of the brain that link what we sense, know, and feel. As the brain is affected in Alzheimer’s disease and particular locations and abilities are damaged, the fact that art touches so many areas of the brain masks single-locations deficits.
The more someone is in touch with his or her feelings, the more he or she can appreciate art. The same is true for creating art. Artists who think too much edit their works mentally before they can express them. Because people living with Alzheimer’s tend to express what they think and feel at the moment, they are natural artists and natural audiences for artistic expression.
From Chapter 6: Establishing Rapport & Cultivating Trust
In their 2009 article on person-centered care (as well as the need to “reconceptualize the meaning of Alzheimer’s disease”), Shabahangi, Faustman, and Geoffrey call for a “reorganization of the social typing of people with Alzheimer’s to be more inclusive of the notion of personhood.” The authors also ask that “we as a society temper the demonization of the disease so we don’t lose sight of our social responsibility to care for people with dementia in ways that recognize and preserve their dignity as human beings. Such efforts are already underway as models of person-centered, relationship-centered, and family-centered care begin to emerge for persons with Alzheimer’s.”
This “expansion of the clinical gaze has implications for caregiving, if for no other reason than we will have more and more people labeled with the diagnosis for longer periods of their life than ever before. This raises the important question of what does the forgetful person bring to our lives? This question is often put aside in the attempt to understand the disease at the expense of the person who has the disease.”
Dr. Epp, in his person-centered article, cites other studies discussing self-esteem and its value in dementia cases. PCC involves establishing and maintaining positive, supportive, social environments for persons with dementia. In these contexts, personhood of individuals with dementia may be enhanced by strengthening the person’s positive feelings, nurturing the person’s abilities or skills, and helping the healing of a psychic wound.
From Chapter 13: The Gifts of Service
Shortly after high school, I began reading self-help books such as Norman Vincent Peale’s The Power of Positive Thinking. About a year after graduating high school, I believe spirit led me to an institution for severely disabled children, where I encountered children who were more deformed beyond anything I had even heard of. I never knew about conditions such as hydrocephalus (water on the brain) that caused children to have heads as flat as pancakes because they were unable to move and reposition themselves, or that children could be born without faces, requiring tube feeding. One eight-year- old child with hydrocephalus, whom I remember particularly, had a head larger than his body, requiring him to live upside-down and use his hands to support his body as he used his feet like hands. In fact, this boy was so capable with his feet, that he used them better than most of the residents could use their hands!
I began volunteering several days a week helping to dress, bath, and feed the residents. I quickly fell in love with those children, and it soon became my purpose to thrive. Seeing that most of these children spent there entire life in their beds, I decided to start an educational and therapy program with the volunteer staff, for which the physical therapist would visit to teach me and the other volunteers to do range-of-motion exercises with the residents. I started to volunteer every day, up to 70 hours a week.
How empowering and rewarding it was, after months of trying to teach a child how to sit and bring a spoonful of food to their mouth, to actually see them succeed!
Finally, I had a purpose to my life. These children gave me the gift of service that filled the void I had been experiencing. My growing sense of purpose and accomplishment, in tandem with the enrichment and empowerment of self that I was learning from my various self-help books helped me to no longer need alcohol.
From that time forward, I learned that when you love and believe in yourself and consciously connect socially, emotionally, and spiritually—what a combination!
At this time in my life, I began to realize that when I had such a spiritual connection to myself and others, the little synchronicities would themselves become more common. I worked with a volunteer at the time—Sarah Herner—whose husband called me and said that Sarah had told him about my work and that he knew of a paying job that I may be interested in. John Herner was one of the early pioneers in the advocacy and passage of Public Law 94-142 Education of All Handicapped Children Act, which assured all children the right to an education no matter their disability. John was the director of the regional program for disabilities, and would later become the Superintendent of Education for the state of Ohio and also President of the National Association of State Directors of Special Education. That telephone call from John was indeed an affirmative sign that it launched my 40-year-plus joy-filled, illustrious career!