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By David Wiley, Transition Specialist TSBVI, Texas Deafblind Outreach

Editor's note: While David's article is written about people with deafblindness, the ideas he discusses are relevant for a much wider population.

Helping a young person with deafblindness develop an active lifestyle is one of the important issues to consider when planning for the future. People with deafblindness, especially those with additional disabilities, may develop a routine of remaining passive and uninvolved with basic life activities around the home, and experience an unsatisfying use of free time. Families, educators, and any others who work with a young person, all have a role in planning and supporting a more active life at home.

Why an active life is important

It is important that kids develop the expectation of being actively involved in home life. Without this expectation, children are at risk of developing a "learned helplessness" that can continue throughout the adult years. Most people feel that being actively involved in everyday activities leads to a higher quality of life. A person who is actively involved in common daily activities, such as taking care of the home and personal care, has several advantages:

  1. Active participation allows a person to avoid boredom and inactivity.
  2. Active participation allows a person to gain a sense of competence and accomplishment.
  3. Active participation allows a person to have a greater sense of control over the circumstances of his or her life and more influence over the way things are done.
  4. Active participation allows a person to have more opportunities for making choices and expressing preferences.
  5. Active participation allows a person to have a better understanding of how everyday things happen (e.g. how long it takes for meals to be prepared, or how clean laundry gets back into drawers).
  6. Active participation supports communication development by providing a person with more topics to use in interactions with others.

Creating opportunities for more participation

When individuals are able to complete activities around the home independently or with minimal supervision, they should be given opportunities and support to do them. This may involve:

  1. Giving him or her responsibilities and chances to use current skills in regular household activities.
  2. Teaching new skills so he or she can take responsibility for regular household activities.
  3. Creating new household routines as opportunities for the person to use his or her skills (e.g. create a garden, get a fish tank, or start recycling).

Partial participation in activities is a way to encourage a more active life for individuals who are not very independent. Even when a person is not able to fully complete an activity, he or she should be given the opportunity to participate at a level in keeping with his or her capabilities. No one should be left out.

Partial participation can involve selecting those steps within an activity routine that a person is able to accomplish independently, and providing a chance for him or her to complete those steps while someone else completes the rest. Activity routines should be "task analyzed," by breaking them into small steps and identifying those steps the person can complete.

When steps cannot be completed independently, people should be allowed to participate in a wide variety of activities with the support of prompts or physical assistance from another person. Once a person is actively involved in a routine, the level of participation and independence can be increased over time, by reducing prompts, adding more steps, or fading the level of support.

Adapting materials and the environment can allow a greater level of participation. Adapted materials may include things such as tactile markers on appliance dials, a non-skid surface on a countertop, an electric razor, or a food processor to cut and stir. Adaptations to the environment include things such as storing materials in consistent locations, reducing clutter, and defining work spaces clearly.

Creating new expectations

It is not unusual for someone to initially protest when asked to join in new activities. Because daily routines are familiar, any person might become upset when these routines are disrupted. People may have a sense of uneasiness when they skip their morning coffee, miss the evening news, or alter some other routine activity. The difficulty of starting new routines is very evident to someone who attempts to change diets, stop smoking, or begin an exercise program.

Being accustomed to a routine of inactivity may cause a young person with deafblindness to initially resist more active participation. This is to be expected, even when the new activities are enjoyable, as would be the case if any routine is replaced by another. Once an individual becomes familiar and comfortable with new expectations and opportunities to be more active, however, the new routines will gradually take the place of inactivity. When that happens, the person will more easily grow to accept and enjoy new chances to participate.

Of course, if someone continues to resist a particular activity over a period of time, there comes a point when this must be accepted and honored as the communication of a preference. Before giving up, however, the person must have had enough opportunities to participate and fully understand the activity.

Free time can present a challenge

A significant portion of every person's time at home is spent with self-directed leisure. Leisure can be defined as unobligated time in which people perceive themselves to be free to choose activities they find meaningful, enjoyable, and intrinsically motivating. During free time, a person may be given the opportunity to "do anything he or she wants to do." But what does it mean to "do anything you want?" There are many steps that must be successfully completed before a person can initiate a leisure activity:

  1. The person must know how to do a number of activities from which he or she can choose.
  2. The person must understand the concept of free time, and know that it represents a time to choose for oneself.
  3. The person must know how to make a choice.
  4. The person must be able to think of, or have a reminder of, the activities he or she is able to do, and from which he or she is able to choose.
  5. The person must know when the free time will end, and how it fits in with other daily activities and events, as well as what activities are appropriate within that time frame.
  6. The person must be able to locate and get the materials needed to participate in an activity.

If any of these steps cause a problem, the person needs more support during free time, just as during self-care or other tasks. When given no support, many people with deafblindness may be unable to successfully initiate a leisure activity. This can be recognized when someone consistently chooses sleeping, sitting idly, or engaging in problem behaviors during free time.

How deafblindness affects the level of activity

Some problems experienced during leisure time are directly related to deafblindness. For example:

  1. People who are deafblind with multiple disabilities are often unable to enjoy many "old standbys" - simple, common leisure activities that people often fall back on (e.g. TV, music, books, conversation, sight-seeing and board games)
  2. Most people are motivated to try new activities they hear about or see others doing, and consequently build a repertOíre of leisure choices. People with deafblindness often receive less information through modeling and other sources in the environment. As a result, they may not have many leisure options from which to choose.
  3. People with deafblindness receive fewer natural environmental cues that prompt self-initiation and independent participation. Most people observe these cues and are reminded of the activities they might want to select when they have free time.
  4. People who are not strong communicators may be unaccustomed to making choices, and unable to easily communicate preferences. They may not be good self-advocates either.
  5. Sensory stimulation often takes on great importance. Activities that do not provide sensory stimulation may not be as motivating.

How to help someone have a more active life

Enhancing participation and increasing self-initiation is beneficial for a higher quality of life. These steps can help a young person become more active:

  1. Create and practice consistent routines that increase participation around the house.
  2. Develop and communicate a daily schedule, so the person will have expectations of what will happen. (Include both "chores" and leisure activities.)
  3. "Label" the concept of free time and support concrete choice-making.
  4. Support the person in learning about self-determination and self-advocacy.
  5. Arrange a system that reminds the person about possible leisure activities.
  6. Assess the person's interests, and plan new experiences for him or her to try.

Assessing and planning new experiences

In assessing interests and planning new experiences, consider the following:

  1. The person's past experiences.
  2. The person's preferences and attitudes.
  3. The expectations and interests of friends and family.
  4. Opportunities available in the person's home.

After gathering this information, support the person to become more active. Enjoyable and familiar preferred activities should be balanced with new things a person can learn more about. Honor the person's choices when possible. When it is not practical to accept a person's preference, because it is inappropriate for some situations, frustrating to the person, or potentially harmful, help the person by adapting these preferred activities to make them more appropriate. New skills should also be taught for specific activities, to increase the number of options the person has, and to provide a larger array of opportunities to choose from.

The Activity Planning Sheet can be used to "brainstorm" new activity ideas. By knowing the young person's preferences and abilities, and working together to encourage a more active life at home, everyone involved can help a young person with deafblindness have a more productive and satisfying lifestyle, now and in the future.

The Process of Planning and Supporting a More Active Home Life

Teacher's Role

  1. Talk to the family and work as a team to determine what routines might work well at home for the student.
  2. Work on similar routines at school, and communicate with the family to create as much consistency as possible.
  3. Make sure daily living and independent leisure activities are routinely discussed during IEP and ITP development.
  4. In order to plan effectively, find out about the activity level and typical support available to adults with deafblindness in their homes.
  5. Document both proficiency and preference, and make a list of activities the student has tried in the past. Documentation can be written and/or videotaped.
  6. Remember that the family has obligations in addition to supporting the student's active home life. Work, doctor appointments, other children, home maintenance, meal preparation and relaxation are only a few of the competing priorities families face.

Family's Role

  1. Make your child's active participation a regular and expected part of family life. Try to be as consistent as possible.
  2. Give your child chores, or find ways to include your child in household duties, even if only in a small way.
  3. Consider all the regular routines that involve your child, and discover some active role for your child in each.
  4. Use a calendar or other way to let your child know what is expected every day.
  5. Help your child make satisfying and productive choices during free time.
  6. Develop new ideas with your child's teacher or care providers, and be consistent across different settings.
  7. Remember your other family obligations, and find a way to support your child consistently without placing too much stress on other aspects of family life.

Other Caregiver's Role (Group Home Staff, Member, Respite Care Worker, etc.)

  1. Work with the individual and family as a team to determine what routines might work well at home.
  2. Make active participation a regular and expected part of the young person's life. Be consistent.
  3. Do things with, not for, the person you are supporting.
  4. During free time, help him/her make choices and participate in satisfying, productive activities.
  5. When necessary, schedule activities with or for the person. Keep in mind the appropriate level of support and his/her preferences.
  6. Use a calendar or other way to let him/her know and anticipate what to expect throughout the day.
  7. Document both proficiency and preference in making a list of activities the student has tried in the past. Documentation can be written and/or videotaped.

Activity Planning Sheet

Developing and Adapting Activities to Improve or Expand Options at Home

  1. What does the person currently enjoy doing or show an interest in?
  2. What might be motivating about this activity?
  3. Does this activity currently create such a problem that it needs to be changed? If not, skip ahead to Question 5.
  4. If so, answer the following three questions:
    • If this activity's location creates the problem, how could changing the setting make the activity better?
    • If the materials used in this activity create the problem, how could changing the materials make the activity better?
    • If the person's inability to finish this activity completely or correctly creates the problem, how could changing the expectations or level of support make the activity better?
  5. What are five new activities that could be motivating or interesting to the person, based on the qualities listed in Question 2?

Worksheet accompanying article "Planning & Supporting a More Active Life at Home" by David Wiley, Texas Deafblind Outreach