Making Choices:
Following Routines
Finding the balance between the comfort of the familiar and excitement of the new.
Meet Ethan.
It is important for people with disabilities to be seen as adult. But what does that mean for someone like Ethan with significant intellectual disabilities? Many things that most adults do on their own require assistance of some kind before Ethan can complete them. One of the ways to help Ethan be seen as an adult is through “partial participation”. This simply means that even when Ethan cannot do all or even most of an activity by himself, he can still be a participant as much as possible. For a mundane example, Ethan cannot do his own laundry. He can, however, do parts of the task. He can pull clothes out of the laundry basket. He can help put clothes in the washer or hand them to another for folding. Such parts when shared add up to “doing the laundry.” Doing the dishes can similarly be broken into lots of separate tasks that he can manage. He can, in short, partially participate in helping around the house, even if he cannot do it all.
Another important way to help Ethan be seen as an adult is to avoid doing something that is typically seen as age inappropriate for someone his age. Ethan likes to stack things while he sits in his wheelchair while watching TV. However, stacking blocks is probably not something that would help his image of adulthood if he were to do it while sitting in a movie theater. But in the privacy of his own home, finding a way to, say, put game tiles on a holder or sorting game pieces into matching piles might be just as enjoyable and more age appropriate. Indeed, there might be any number of activities that Ethan enjoys that are better done at home or done in more age-appropriate ways. Part of being an adult is being seen as an adult by others. Part of that image is engaging in age-appropriate activities as much as possible.
This can even extend to merging preferred activities with exercise or “therapy”. Ethan’s left arm doesn't work well and is often clenched. Checking yourself in the mirror in the van with your left arm requires reaching to bring the visor down and opening the mirror cover. Throwing cat toys to your two cats when home or playing Wii tennis can similarly combine exercise and age-appropriate fun.
Meet Nathan.
Nathan likes to make choices. He also likes an ordered, routine schedule with no surprises. In fact, “no surprises” is the watchword that helps Nathan move through his life on an even keel. Over time Nathan has come to rely on a weekly schedule kept on the refrigerator door so that he can review plans for his day and week. Sometimes he likes to participate in planning the weekly schedule, especially if there are less welcome activities like a doctor’s appointment. This another key to balancing out is week. In fact, getting to choose many of his weekly activities helps him not only feel that balance but helps give him favored activities to anticipate.
Nathan makes choices about everything from what to have for breakfast to where to go on vacation. He has tried and true preferences about what choice is the right one. This is also true even if it is a situation where he almost always makes the same choice. One good example is Nathan likes to go fishing, but only on the Umpqua river and only for bass. Another river, lake or type of fish won’t do. Indeed, one of the tricky parts of supporting Nathan is to get him to try something new occasionally.
Being busy out and about is his favorite mode. He enjoys his work on the UO campus and decorating cookies at the bakery. But he also likes to explore things in crowds. Any “show” at a fairground is worth Nathan’s exploration: home show, gem show, RV show – all are fun to explore for Nathan.
Suffice it to say that the act of choosing is one of the most important ways that Nathan gets to define his own adulthood.
Of course, there are limits to Nathan’s choices. There are issues of health and safety, for instance, that are not open to whims of the moment. So, to a certain extent, Nathan can choose when to take a shower. What he cannot do is choose to avoid personal hygiene of any kind. So, allow Nathan to choose when and how to arrange his shower time, but somehow the shower or bath has to occur.
Choices can be complicated for sure. Nathan likes routines. Making a new choice instead of a usual option is often hard for Nathan to do. So, if a new opportunity arises that everyone involved with Nathan thinks he would enjoy, it still has to be introduced thoughtfully or else he might reject it out of hand without trying it at all. When family members are involved in planning things for Nathan, there can be differences of opinion about what choices are being made. Nathan’s Mom works hard to respect his self-determination while looking for ways for him to remain safe and healthy. Finding the right balance between variety and familiarity is a choice all of us make.
Meet Trish.
Trish is the quintessential home body. She likes being at home with family. Left to her own choices, she would likely “choose” to stay home feeling safe and spending time drawing in her books. She finds her repeated marking up her tablets soothing and endlessly fascinating. The challenge for her supporters is to creatively find ways to introduce new possibilities.
Over many years she has gradually discovered that she also enjoys long drives, especially ones where she can see animals, like cows and sheep. Or driving through neighborhoods where she might get to see wild turkeys, noisy birds or the occasional deer. She also discovered she enjoys being at the airport where she can find a good plane watching site and watch the comings and goings. Gradually, Trish has also become involved in going to the Dollar Store to purchase her own books and tablets as well as her favorite soda, of course.
Over the years, Trish has developed her own strategies for interacting with people. One of the strategies she uses most often when she meets someone new is simply to ask the person a series of questions. The questions are basic, but they work for Tara as a strategy to put her interactions in a safe context. She knows how to ask questions and keeps asking them as a comfortable way to carry on a conversation with someone. For example, recently I met her and her CSO support person at a local restaurant for lunch. She peppered me with questions about my clothes (where did I get it?), my jewelry (how long have I had it?), my favorite color, food, or place to go. The questions continued unabated until our orders arrived when she could focus on eating instead of questioning. Trish’s approach to interaction is comfortable for her and preferable to being asked to answer questions.
Like Nathan and Ethan, Trish also has strong opinions about what and where activities should occur. As with Nathan and Ethan, Trish is a firm believer in sticking to a routine. Drinking the same brand if soda pop; ordering the same food at the same restaurant; going to the same Dollar Store. Of course, all of us have preferences. For Trish, these preferences seem to be part of her way of maintaining some control in her life. Knowing what comes next is a way to exert some independence.