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Mental Wellness in Adults with Down Syndrome

A Guide to Emotional and Behavioral Strengths and Challenges
Dennis McGuire, Ph.D. & Brian Chicoine, M.D.

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isbn# 978-1-890627-65-2
7" x 10"
432 pages
Medications Addendum

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Chapter 9

Don would wake each work day at the same time and invariably follow the same routine. First he would have his toast and juice, then shave, shower, and dress in the same meticulous way. His parents and boss could count on him to be clean and well groomed for work. Likewise, his boss could count on him to be punctual and reliable with his work activities. After work he would have a snack, do his chores (take out the garbage, set the table), and make sure everything in his room was put away. Each Tuesday he would wash his clothes; Wednesdays he would pick up and vacuum the house. After dinner he would relax in his room with his favorite movie or music while writing in his notebook or doing word search puzzles. Saturdays he would get up at the same time to eat breakfast, then on to shave, shower, dress, and off to bowling and later to a social club. His family grew to expect this regularity of Don and he was very reliable with his routines.

At the Adult Down Syndrome Center, we have discovered that an unusually high number of people with Down syndrome, like Don, need sameness, repetition, and order in their lives. We call this tendency "The Groove" because people's behavior tends to follow fairly well-worn paths or grooves. We have found these groove-like tendencies to be so common in people with DS that the absence of this tendency is notable for its rarity. We will summarize ideas on different types of grooves and the advantages and disadvantages of grooves. Following this we will discuss means for identifying and resolving problems arising from "stuck grooves."

What Is A Groove?

A simple definition of a groove is a set pattern or routine in one's actions or thoughts. We all have grooves in our daily lives or absolutely nothing would get done. For example, if every morning we had to rethink when or how to take a shower, brush our teeth, put on socks, tie our shoes, and make toast, we would never leave home in the morning. Multiply this by all the other automatic and routine tasks we do every day at home, at work, and in the community and it is easy to see that a world without grooves would grind to a halt.

People with Down Syndrome are particularly good at this business of having and following grooves in their daily lives. Many follow grooves with a degree of precision that would impress a fussy accountant. Examples of grooves we have seen include:

  • Having a set order and timing to daily routines, to include set morning, evening, and work routines, as well as routines for activities that are relaxing. For example, many people with Down syndrome draw or copy words or letters during their time at home.
  • Being quite meticulous in the care of their appearance and grooming, as well as of their rooms and possessions. People with DS often have a set place for furniture and other personal items in their rooms or living spaces. Items that are moved or disturbed by others are usually returned to the original location in short order.
  • Developing grooves around less frequent activities, such as a set method for packing clothes, for ordering in restaurants, or for celebrating weddings, birthdays, holidays, etc.
  • Having grooves which center on personal preferences for such things as music, sports teams, social and recreation activities, or celebrities, as well as for more personal issues such as a favorite relative or a love interest. These preferences help to define who the person is by what he likes to do and who he likes to do it with.

    There are numerous advantages to these grooves. Grooves give an important sense of order and structure to people's daily lives. Grooves are of great benefit in increasing independence. Once an activity is learned and becomes a part of a daily routine, these tasks will be completed faithfully. Independence and performance may also be enhanced in the work environment. Employers are often impressed with how reliable workers with Down syndrome are in completing routine work and in following time schedules.

    Using Grooves To Relax

    Groove activities may also offer a refuge from the stresses and strains of daily life in the home or on the job. These activities often involve repeating a specific enjoyable activity in a quiet or private space, sometimes as part of the daily routine. At home, the person's private space will often be his bedroom or bathroom. Some of the most common activities people with DS enjoy repeating include reading, writing or drawing, listening to music, watching TV or videos, looking at family pictures, or doing such crafts and hobbies as needlework or arranging collected items. In fact, some of the most common activities may appear rather unusual, such as copying letters or words onto paper or a notebook or cleaning or organizing their rooms. However, there is no question that this is relaxing to the person. In the bathroom, relaxing activities include cleaning or grooming tasks, as well as just sitting and relaxing.

    On the job, repeating a relaxing activity may give adults with Down syndrome a brief but valuable respite from interacting with others, from the noise and hassle of the workplace, and from the tedium of work. At work, the chosen space is quite often the bathroom because this is frequently the only place where there is some quiet or privacy. As at home, relaxing grooves may include doing some grooming tasks or just sitting and relaxing in one of the stalls. Debra, 32, an office assistant, frequently relaxes during breaks by listening to music on her headphones or by doing "word searches" at her desk.

    Grooves Related To Appearance And Possessions

    Also of great benefit to people with DS are grooves involving the meticulous care of their own appearance, room, and personal items. Careful grooming and dressing conveys an image of pride, self-respect, and dignity to others and may increase one's own pride and self-respect. This may be especially important for people with Down syndrome, who have distinctive physical features that clearly mark them as different. This difference makes them susceptible to discrimination, which may occur with any minority group. The self-pride that comes from attention to dress and grooming may go a long way to reduce the stigmatizing effect of being different.

    Ordering Grooves

    Ordering grooves are also very important to many people with Down syndrome. Ordering involves being neat and tidy with one's room, furniture, clothing, and other personal items, such as videos pictures, CD's etc. When ordering and arranging, many people feel a need to close doors and cabinets and turn off lights. Many people are very careful with folding and putting away clothing in drawers and on hangers in their closets. If taken to an extreme, these ordering tendencies can be difficult for families to live with, as detailed in the section on Disadvantages below.

    Grooves Related To Personal Preferences

    Finally, and most importantly, the groove is a powerful means of expression and communication. This is especially true for people with Down syndrome who have a limited ability to express themselves verbally. Each groove is a clear and unambiguous statement of a personal choice or preference. For example, daily grooves and routines express how someone chooses to organize and manage such things as his own grooming, appearance, and personal items: his participation in social, recreational, and work activities; and his personal preferences in music, hobbies, and artistic endeavors. Each person's choices will, in turn, help to shape and define his own unique style and personality.

    For some, grooves may even take on a life-saving role. For example:
    Cassie, 28, has Down syndrome as well as a genetic disease that causes progressive and irreversible muscle deterioration that will eventually lead to an untimely death. This horrible disease has already taken the life of all but one sibling. Cassie is well aware of her condition and yet she continues to maintain a strong positive attitude about life and about the people in her life. In fact, when we first met Cassie, one of the most difficult aspects of her disease was not the pain and discomfort it caused but the fact that she frequently missed seeing her friends at work or at social activities because she was too tired or ill to go out.

    We discovered that the primary reason Cassie is able to maintain her positive attitude is that she has developed a number of routines that are not only extremely relaxing but also allow her to connect to others. True to the nature of grooves, these routines often occur at a set time and in a set order. For example, she often starts with a favorite activity, which is to make one of her endless lists of things on her computer. She frequently follows this with a period of thoughtful letter writing to friends to extended family members. Finally, she carefully and meticulously writes personal thoughts in her diary.

    Despite Cassie's illness and many losses in her life, these routines give her free time a shape and form which serves at least three important purposes. First, she is able to avoid despair because she is simply too busy for self-pity. Second, her letters allow her to connect with family and friends, even if not in person. Thanks to her exceptional visual memory, she feels almost as if she is conversing with them while writing. She is even able to write to her deceased family members "in heaven," which gives her a great deal of comfort. Third, through her letters and diary, she is able to express her feelings--including positive feelings as well as her fears and concerns about her illness and her great sense of loss for her family. As grooves, these activities are repeated reliably every day, ensuring that she continues to get the benefits of these activities.

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