Working with Unusual Brains

By Ellen Vliet Cohen on Apr 07, 2016

As a massage therapist, I recently took on a new gig giving hand massage to patients in the Alzheimer’s unit of a nearby assisted living facility. I approached my first few visits with trepidation, not having actually had the experience of a close friend or relative with Alzheimer’s. In studying up on the disease, I realized that there are many similarities between people with Alzheimer’s and children with special needs, particularly those with brain-based or neurological challenges such as cortical visual impairment (CVI), autism, and traumatic brain injury. 
One of the best Alzheimer’s resources that I found is “Learning to Speak Alzheimer’s,” a book written by Joanne Koenig Coste, who developed a highly successful approach to interacting with patients called the Habilitation Care Model. In many ways, this model parallels best practices for teaching children with special needs.
As with CVI, or autism, people with Alzheimer’s do not fit neatly into a common description, and the behavior of an individual can vary from day to day. Some have trouble making visual sense of their world, some have trouble communicating, and many act out when they are unable to communicate what they want or are feeling. Coste counsels people to “live in the patient’s world,” whatever that current place or time is, and to find joy with the person there.  
Children with special needs also dwell in a world that is sometimes hard for us to fathom. As the people who profess to know what “normal” is, it is our job to listen, observe, and try to relate to each child in their own way based on what we see as their strengths-- on what lights them up with interest. And joy or humor always helps. Autism and visual impairment expert Linda Hagood calls this “finding the smile,” and it is extremely helpful in forming a good relationship with people with unusual brains.
Another major tenet of the habilitation care model is to make the physical environment work.  Like neurologically challenged children, people with Alzheimer’s can have trouble interpreting visual information. They may have trouble with shadows, glare, or dark spots on a carpet. They might not be able to find an object if it is the same color as the background where it rests. Sound familiar? For these and other challenges, Coste presents guidelines about choosing bold, simple colors, using contrast to delineate borders, highlighting routes and significant objects, and avoiding glare: all familiar practices to professionals in the field of visual impairment.  
Beyond the practical solutions for the physical environment, what I like most about the habilitation model is its emphasis on helping each person function at their maximum capacity. Coste advises to be understanding and patient about what a person cannot do, and to facilitate as much as possible what they are able to do so that they can feel good about achieving something. In special education this is called partial participation.  For example, if a child is not able to pour cups of orange juice for each classmate, he or she could still possibly count the cups and feel a part of the action.  
Coste declares that even the most neurologically challenged people have an innate drive to achieve their maximum potential.  What’s more, everyone has an instinctive need to feel like they are doing something useful – to have a purpose outside of him or herself. As an orientation and mobility teacher, my students responded best to tasks that had actual meaning to them: returning the book bag of another student who had forgotten it in the classroom, choosing and purchasing a gift for a sibling at the corner store, or giving directions to a visitor trying to find a room in an unfamiliar school. We need to provide every opportunity we can for a person with special needs to feel useful and successful – including employing them once they are done with school.
As a final note, Coste recommends a continual review and update of the care plan for each person based on observation of how the person “thinks, feels, communicates, compensates, and responds to change, emotion, and love.” That pretty much covers all bases. It is a good reminder for special education teachers as well that our students can change, and we should not adhere rigidly to an assessment of their abilities at a single point in time. As one of my mentor teachers once said to me, “your students will teach you.” So let’s pay attention to them, respect them, and help them accomplish something that will make them feel good about themselves. And by the way, have fun doing it!
Ellen Vliet Cohen is a massage therapist and former O&M teacher for Perkins Educational Partnerships.