American Action Fund for Blind Children and Adults
Future Reflections Convention 2019 CONFERENCE WORKSHOPS
by Carol Castellano
From the Editor: Once highly controversial, sensory integration exercises are proving effective for many children, and even for some adults. Some behaviors that have been attributed to blindness may in fact result from a sensory integration disorder. In this article, based on a presentation at the 2019 NOPBC conference, author and advocate Carol Castellano draws on her personal experience with sensory integration exercises.
Sensory integration therapy, a specialized form of occupational therapy (OT), was developed by Dr. Jean Ayres in the 1970s. Dr. Ayres described the complex interplay among our senses and the systems of the brain. When the systems are working well together, the child can interpret situations correctly and make appropriate responses. Dr. Ayres called this a state of sensory integration.
All of the information we receive directly about the world comes to us through our senses—touch, taste, sight, hearing, and smell. Dr. Ayres included two additional senses in her list—the proprioceptive and vestibular senses. These senses give us information about our own bodies.
Proprioception refers to information we receive through sensation receptors in our muscles, joints, and tendons. These receptors tell us our body position, our posture, where our body parts are and how they are moving, the force of our movements, and how much pressure we are exerting. They tell us how far our muscles are stretched and enable us to hold onto things.
The vestibular sense gives us information through receptors in our inner ears. This information enables us to balance and tells us our body position in relation to our surroundings. For example, our vestibular sense helps us stay upright during active movement. It leads to our understanding of gravity and response to gravity (am I right side up or upside down?).
The information we receive through our various sensation receptors is sent automatically to the brain. The brain organizes and interprets this vast amount of sensory information, and in turn it sends signals out to the muscles, telling them how to respond. All of this happens automatically, and we are not even aware that it is going on. For example, if we touch a hot stove, we instantly pull our hand away. We don't have to think about what to do.
The development of these complex systems—sensations in, analysis by the brain, response out—begins before birth. For most children, the connections within the sensory systems and the brain continue to develop through regular childhood activities. Information constantly pours into the brain from all parts of the body. When the brain organizes and interprets this information correctly, the results are smooth, appropriate movement and behavior, which Dr. Ayres calls sensory integration. If there are disruptions in the systems—senses to brain, brain's ability to interpret and analyze, brain sending signals to muscles to move or behave in certain ways—dysfunctions can result.
According to Dr. Ayres, "When sensations flow in a well organized or integrated manner, the brain can use those sensations to form perceptions, behavior, and learning. When the flow of sensations is disorganized, life can be like a rush-hour traffic jam." (Ayres, A. Jean. PhD, Sensory Integration and the Child: Understanding Hidden Sensory Challenge, 25th Anniversary Edition, Western Psychological Services, 2005, p. 5.) Children with various dysfunctions are said to have a sensory processing disorder.
Children with sensory processing difficulties might display some of the following symptoms:
All of these situations can impede playing, paying attention, learning, feeling comfortable, interacting with others, eating, sleeping, and almost any other part of daily life. Which children might be affected by problems of this kind? Premies; children with speech, language, or behavior issues; children with cerebral palsy; children with ADD or ADHD; children with learning disabilities or motor problems; and children with various "neuro" diagnoses—the list goes on and on!
Just as sensory integration problems can disrupt many, if not all, areas of a child's life, sensory integration therapy can improve them. The idea behind the therapy is to wake up parts of the sensory system, improve connections, get the brain to organize the information coming in through senses more effectively, and get appropriate behaviors and muscle responses to occur. The emphasis is on changing the actual response that comes from the child's brain, not on teaching the child a formulated response. Therapy is done through fun and play-type activities that enable children to develop the senses, explore the environment, and understand the world around them and respond to it appropriately.
These are some of the tools used in sensory integration therapy:
These tools and techniques are not specific to blindness, but with such emphasis on touch and movement, they are easily applicable with blind children.
My daughter Serena was born at twenty-three-and-a-half weeks gestation, so she was an extremely premature baby. When we finally were able to bring her home from the hospital, after almost eight months, she experienced the aftermath of her extreme prematurity. She had low muscle tone; weakness; passivity; high tolerance for irritating stimuli; high pain tolerance; motor planning problems; and oral-verbal dyspraxia, meaning that she could not voluntarily move the muscles of her face and mouth. Her arms hung limply behind her from lying flat in an incubator and being tethered with tubes and wires to the bed for so long. Not so good for a blind child! To say she had some delays in development would be an understatement!
Serena's occupational therapist (OT) not only was trained in sensory integration therapy, she was a pioneer in the field in her home country of Japan. Luckily for our family, she seemed to know just what to do in order to "wake up" our child. Using many of the tools listed above, she had Serena doing weight-bearing actions, walking on uneven surfaces, exploring textures, doing spatial orientation activities, and changing the natural pace of her movements.
Our OT included me in every lesson so that I would understand what we were doing and what we aimed to accomplish. At the beginning, she had to use a doll to show me the activities because Serena would not interact with her. The therapist sent me home with homework activities and told me what to do next when Serena achieved a goal. When we returned for the next session, I was able to report progress. This made the therapist happy, and she praised my work. That made me happy, too! We both saw the progress Serena was making, and this made all of us happy!
Serena was also getting speech therapy. Every time she made progress in her body, she made progress in her mouth; and every time she made progress in her mouth, she made progress in her body. Her brain was making the connections! My passive baby who could not use her hands, move food in her mouth, or sit up, and who missed all her developmental milestones by miles, turned into someone who could walk, jump, balance, learn Braille, talk, chew, eat, and do all the tasks she needed to do. The OT "graduated" Serena when she was five years old. Though Serena may never excel in some tasks, the therapist pronounced her "functional in all areas," and indeed she is.
My other direct experience with sensory integration therapy is with Amy Albin, a college student whom I know through the Federation. In July 2019 she received a national scholarship from the NFB. When Amy was a teen, I observed her having trouble using the zipper on a duffle bag and difficulty walking on sand at the beach. Also she was unable to change the pace of her walking. I recognized the kinds of trouble she was having and thought that sensory integration exercises might help her.
A few years later Amy attended a rehab program. She had great difficulty learning the various tasks they were trying to teach her—how to make a bed, clean a counter, fold a towel, etc. Amy was a brilliant academic student, so it wasn't that she did not know how to learn. Our NFB state president, a mutual friend, told her I might be able to help, and he encouraged her to give me a call.
Amy and I have worked together a couple of times a month for the past two years. At first she despaired that it would take her months to learn every task, but I knew that once her brain and body learned to work together, her hands would begin to respond automatically.
When we began working together I asked Amy to demonstrate how she cleaned a counter. I realized right away that it was no wonder she could not clean a countertop—she had no idea where her arms and hands were! She could not tell if her arms were out in front or out to the side; she could not recognize whether her palms were face up or face down.
When I gave her attribute blocks to look at, Amy was not immediately able to tell whether the shape she was holding was a triangle or a square. She knew very well cognitively what triangles and squares were and how they were different, but her hands couldn't immediately perceive the shapes. I realized that we would have to start at the beginning.
I began to put Amy through some of the exercises Serena had done as a child. (I will explain some of the basic exercises at the end of this article.) Amy wanted to learn to clean a counter and fold a towel and hang clothing in a closet. Sensory integration exercises do not teach a person to do these tasks. Instead, they wake up the sensation receptors, teach your brain to interpret sensations so that you know where your hands and arms and feet are, and enable the brain to send out the correct signals to let your body know how to move and react. Once the sensory systems are working in an organized manner, your arms and hands can much more easily learn to clean a counter, fold a towel, or hang garments. They teach your body to understand where it is in terms of other objects in the environment. With this awareness, understanding how to position the hands to hang clothes or clean a counter becomes automatic. The exercises teach your hips and knees, ankles and toes to sense how different movements feel and how to put them together so that walking smoothly becomes automatic.
If you see your child reflected in the categories mentioned in this article, I hope you will seek out this specialized therapy and see if it works for him or her. It can be difficult to find a therapist trained in this specialty or with an interest in this field. You may even encounter resistance to the whole idea. Because sensory processing issues can be a part of so many different disorders, some professionals in the field believe there should not be a separate category called "sensory processing disorder" with its own therapy to ameliorate it.
Another controversy around sensory integration therapy is the question of whether the brain can be "rewired" as practitioners claim. In my experience, the answer is a resounding yes!
OTs trained in sensory integration therapy, or those interested in or knowledgeable in the area, will assess your child in various areas and create an individualized plan. They will use activities that enable your child to interpret and respond appropriately to sensory input. Some activities will make movement and balance easier and more efficient, especially helpful to a blind child. Other activities enable the child to interpret and respond calmly to sounds and other stimuli, especially helpful for a child on the autism spectrum. Some activities can help the child filter out certain stimuli, beneficial for a child with attention issues.
I hope that you are able to find a sensory integration therapist. If you cannot, I invite you to contact me at [email protected]. I will help if I possibly can. Whether or not you are able to find a trained therapist, please read the resources provided below and others that you will find online. These books and articles will help you learn how to do some of this work yourself. You can help your child at home and encourage the incorporation of some of the ideas and activities into the school environment.
Sensory integration work takes patience. You're always working backwards, breaking down the movement or activity, peeling back layers to get to the underlying sensations and movements the child needs to learn. Remember that you are not teaching your child how to do a task. You are bringing out and then practicing the underlying abilities that will enable your child to learn to do the task later on.
All of these exercises are meant to make connections in the circuits. They develop awareness of sensations. They enable the brain to make sense of the sensations coming in, then send out the correct instruction, waking up the muscles and enabling those muscles to move appropriately. They build body awareness, balance, strength, and coordination. I learned some of these exercises years ago from my daughter's OT; others I developed in response to the difficulties Amy was experiencing. You can design exercises that make sense for your child's challenges.
Many books and online articles about sensory integration are available. Here are two available for download (the first is Dr. Ayres's original book for parents):
A Parent's Guide to Understanding Sensory Integration
Sensory Integration International
A Guide to Sensory Integration for Parents
By Emily Eastman, OTS & Teresa A. May-Benson, ScD, OTR/L, FAOTA
In conclusion, I would like to express my thanks to Sadako Vargas, who was a pioneer in this field in her native Japan; and to Joe Cutter, whose creative interventions helped change the field of orientation and mobility in the United States and beyond. Not only did they enable my daughter to develop, but they began my education on this subject.