Summer 99 Table of Contents
Versión Español de este artículo (Spanish Version)

By Kate Moss, Family Support Specialist and Robbie Blaha, Teacher Trainer, TSBVI, Texas Deafblind Outreach

This article first appeared in the July 1993 edition of P.S. NEWS!!!

Leisure time, the time free from work or duties, is important to all human beings. Leisure time is the time for doing something that will relax us or energize us so that we can renew ourselves to face the demands of our lives. It is something we require as much as food or sleep to stay healthy and sane.

We all have different ways of spending our leisure time. What might be a leisure activity for me (reading a mystery) might not be leisure for you. We know and accept this about each other. When considering "leisure skills" for children with deafblindness, however, we often focus on activities that do not relax or positively energize them. We spend their time getting them to participate in "play work" as one young man with deafblindness terms it. Learning to play games, participate in arts and sports activities, or other pursuits as a part of their educational programming may be beneficial for children in many ways, but these activities don't necessarily meet their needs for "leisure".

The type of activities that often do provide relaxation or amusement for these individuals includes behaviors that we find unacceptable: flicking your hand in front of your eyes, pulling threads out of your clothes, making repetitive sounds, etc. These behaviors are considered self-stimulation, and as such are often perceived negatively because they do not look "normal", may interfere with learning and can often become self-injurious. Yet these behaviors serve a positive purpose for these individuals as well.

Changing our perception of these self-stimulation behaviors may be the most reasonable course to take in addressing this issue. This is especially true if a change of perception also helps us find ways to give more information to the child who is deafblind and consequently reduce his need to find stimulation on his own. These behaviors may also hold the key to information about his/her personal preferences which we may tap into to select more appropriate choices for typical leisure options.

Stimulating Experiences

Most of our "leisure activities" are nothing more than self-stimulation behaviors that have become highly ritualized over time and made socially acceptable. There is nothing intrinsically valuable or reasonable about leisure pursuits such as bungee jumping, playing cards, dancing, playing video games, listening to music, smoking, etc.

People participate in different activities because they find them to be pleasurable and because the activities alter their physical state. Each of these activities provides us with a particular type of sensory input. (See Chart) There is not necessarily a great difference in so-called self-stimulation behaviors and some of these activities beyond the fact that some are more socially acceptable and "normal" in appearance than others. For example, what is really so different about banging a table and banging a drum, rocking to music and rocking to silence, making repetitive sounds and imitating bird calls, spinning for no apparent reason and spinning in a ride at the amusement park?

Each day a good portion of our energies is spent in self-stimulation. Just look at the people around you. You are in a room with your family watching television or at a meeting with a group of co-workers. Although you are seemingly engaged in the same activity, your daughter or colleague is playing with her hair. Your son or your office-mate is shaking his leg and tapping out rhythms on the arm of the chair. Your husband is flipping channels with the remote or your boss is flipping papers. If you ask them what they were doing, they will likely reply that they are watching television or having an important meeting. They will be less likely to say they were channel surfing, twirling their hair, practicing the drum part for "Wipe Out", or fanning their papers.

Each of us, even those of us with more intact central nervous systems, also tolerate differing degrees of stimulation. Look at the difference in the preferred musical tastes (and intensity levels) between the teenager and the forty-year-old. Although most teenagers enjoy megawatt rock concerts with all the trimmings, most adults are more inclined to seek out softer music or silence in a dimly lit room. In the same way, children with deafblindness need varying amounts and intensities of stimulation.

Questions to ask about self-stimulation

If we come to accept that self-stimulation is an important and valid activity for individuals without disabilities, then we must begin to revise our thinking about addressing self-stimulatory behaviors in individuals with deafblindness.

Can this behavior be stopped?

In looking for the answer to this question, first take a look at yourself. Try this little exercise. Identify one of your own deeply cherished self-stimulatory behaviors such as cracking your knuckles, humming, sliding a charm on your necklace, etc. Try to keep track of how many times during the course of a 24-hour period your engage in this behavior. Then spend the next 24 hours refraining from this behavior. If you succeed, then try to extinguish that particular behavior for a year. Stop this behavior under all kinds of circumstances: times of stress, times of idleness, etc. Once you have completed this exercise, answer the question for yourself. Your answer will either be a resounding "no" or a "maybe, if" depending on your particular success in completing the exercise.

Children with deafblindness (just like you and me) participate in self-stimulatory behavior to calm, to energize, to get feedback, etc. Most of the time you can't completely extinguish the behavior, nor should you, because it does serve a purpose.

Can this behavior be redirected?

Most parents find that their child is more likely to participate in self-stimulatory behaviors when he/she is idle or stressed. Interacting with your child in some way may break up the self-stimulation. If the behavior appears in response to stress, finding ways to help him/her relax (e.g. massage, being wrapped up in a quilt, etc.) may reduce the amount of time spent in this behavior that you find inappropriate or harmful. If your child is left alone, however, it is likely he/she will re-engage in this activity as soon as the opportunity presents itself.

Can this behavior be "contained" by allowing it in certain locations or at certain times?

Some behaviors may present problems because they are considered socially inappropriate. Those of us who are smokers have learned to refrain from our favorite self-stimulation behavior on flights, but we all know exactly where to go in the airport to have that last cigarette before the flight leaves.

With some effort many children can learn to remove themselves to their bedroom or a private place when engaging in self-stimulation that is not considered socially acceptable. Using calendar symbols to represent this favored activity and scheduling the activity as part of the child's day may help the child refrain from this particular self-stimulation behavior for increasingly longer periods of time and stay involved in other kinds of activities.

Can this behavior be modified or expanded into more "socially acceptable" self-stimulatory behaviors?

The value of a self-stimulatory behavior is what the behavior tells you about how your child takes in information. If your child likes to burrow down inside the cushions of the couch, be held or hugged a lot, or enjoys massage, you can assume that he is motivated by information he receives proprioceptively. If your child likes to vocalize, listen to music, or bang things together next to his ear, you can assume he is motivated by information he receives auditorially.

These behaviors can be used as a way to explore the individual's preferred sensory channels for receiving information from the world. With this information we may find preferred sensory experiences around which we can develop more "mainstream" leisure activities for children that they will also come to view as "leisure". For example, if a child enjoys the visual sensation of lights we can find age-appropriate toys that might be motivating to him. In addition to familiar toys such as Lite-Brite, consider lava lamps, continuous wave machines, lighted drafting tables for drawing, and even some Nintendo-type games. You might also consider extracurricular events such as visiting arcades, decorating with lights for appropriate holidays, and/or lying in a hammock under a tree watching the play of light through the leaves.

Take time to observe the types of self-stimulation that your child participates in and when this behavior occurs. Watch him/her and make notes about what you see and when you see it. Then try to see if there is any pattern to these behaviors that will give you insight to the type or types of stimulation he/she prefers and the purpose it serves. At the same time note what types of activities he/she finds aversive.

When you have a good understanding about his/her preferences, begin to brainstorm ways that you can offer other stimulatory activities or perhaps modify or expand on the preferred self-stimulation. Ask for help from your child's teacher, physical therapist, occupational therapist, and others. Look at children of the same age and try to find toys or activities that may make the self-stimulatory behavior appear more "normal".

Sometimes your child's favorite self-stimulation activity can be modified or expanded in a way that will make it more socially acceptable. For example, everyone knows the "nail-biters", but do you recognize them when they become "the manicurists". Several of my friends substitute the more acceptable behavior of nail care for their favorite activity of nail biting. They carry a complete manicure set with them at all times and can often be seen in meetings quietly filing or clipping a nail. They buff, cream, and polish. They examine their nails for chipping, snags, splits. They are rewarded by others who admire their efforts instead of being held in low esteem as one of those nervous nail-biter types.

You should realize, however, that generally your child will need support from you to seek out these more acceptable behaviors. Their first preference will generally be for the behavior they have developed on their own.

Can the environment be engineered to make this behavior safer if the behavior is detrimental to the child or those around him/her?

People who like to jump off things are great examples of engineering the environment to make a dangerous self-stimulation behavior safer. These folks (skate-boarders, skydivers, skiers, etc.) have developed elaborate ways of placing themselves in extremely dangerous activities and surviving. We have industries based on protective clothing and equipment that will allow them to hurl themselves through space and make a safe landing.

Frequently, with children who put themselves in danger of bodily harm by participating in self-stimulation activities that are excessive to the point of creating physical danger to themselves or others, the best you can do is to provide protection. Splints, helmets and other devices sometimes must be used temporarily to protect the child and others around him/her.

Could there be physical or emotional factors provoking these behaviors?

In addition to providing protection from the effects of the behavior, it is important to look at the cause of the behavior. Often times these behaviors erupt in response to real physical problems that the child is not capable of communicating to you. Emergence of these behaviors or increase in these behaviors, might indicate pain or decrease of sensation as in the case of retina detachment or ear infections. Seeking out appropriate medical examinations when this type of behavior emerges or escalates is very important to the health and safety of the child.

Emotional and environmental conditions may also provoke increases in these self-injurious behaviors. One individual I knew exhibited a dramatic increase in self-stimulatory behavior after the death of her father. The amount and intensity of the behavior posed concerns for her safety and the safety of others. Since there was no physiological basis for her behavior, the family spent a lot of time with her looking at pictures of her dad, going to the cemetery with her, and trying to participate with her in activities that were associated with her father. After a period of time, the behaviors decreased to levels that were in line with the period before her father's death.

Changes in schedules, changes in routines, or moves to new environments can also bring about increases in self-stimulation behavior. Helping the child to anticipate these changes and providing as much consistency as possible through routines during times of change, are strategies that may help to reduce the amount of this type of behavior.

Conclusion

Like you and me, children with deafblindness have a need to participate in self-stimulatory activities. Because their behaviors appear very different from our own and can interfere with learning or become dangerous, they are viewed negatively by many people. Changing our perception about these behaviors may help us deal with them in a better way.

There are a number of ways to deal with self-stimulatory behaviors. Plan ways to keep the child more involved with others during the course of the day. Work to help him/her contain the behavior, or engineer the environment to make the behavior safer. Schedule time into the day to allow your child time for this preferred activity. Look at ways to adapt the behavior so that it will appear more "normal". Learn to use the information these behaviors offer about your child's preferred channels of sensory input to develop recreational and social pursuits that may be enjoyable for him/her even if these activities will not entirely meet his/her "leisure" needs. Finally, accept that you will probably never completely extinguish the behavior without having it replaced by another self-stimulatory behavior. Self-stimulation is common to all humans and serves an important purpose.

Resources and Additional Reading:

Levack, Nancy et al. Low Vision: A Resource Guide with Adaptations for Students with Visual Impairments, TSBVI, 1991.

Kotulak, Ronald. Unlocking the mysteries of the brain. Austin American Statesman, Sunday, June 6, 1993, p G1 and G4-6.

Restak, Richard, M.D. The Brain, Bantam Books, 1984.

Romanczyk, R. G., Kistner, J. A., and Plienis, A. Self-stimulatory and self-injurious behavior: etiology and treatment, pps. 189-254 in Autism and Severe Psychopathology, Advances in Child Behavioral Analysis and Therapy, Vol. 2.

Rojahn, J. and Sisson, L. A. Stereotyped behavior, pps. 181-223 in Handbook of Behavior Modification with the Mentally Retarded, 2nd Ed., 1990.

Stone, Gretchen. Self-stimulation and learning behavior, 1987.

Silverrain, Ann. An informal paper: teaching the profoundly handicapped child, 1991.

van Dijk, Jan. Movement and communication with rubella children, 1968.

Wiley, David. It's more than a game: acquiring skills for leisure time, VISIONS, TSBVI, Outreach Department, May 1993.