Brook is 27 years old and lives in a group home. This is the second place Brook has lived since he moved out of his parents’ home, something he really wanted to do. The first group home was too limiting, and Brook was very unhappy living there. He was constantly battling with the staff because he wanted to do something different from what the staff and management were used to. Brook’s parents want their son to make choices about how he spends his time, what he eats, how he dresses, when he goes to sleep, and so on. He does need some support, and they feel a group living situation is the best option for him right now. The management and staff at Brook’s current group home believe strongly in letting the people they support make choices throughout the day with only as much support as is truly needed. This philosophy is consistent with how Brook’s parents raised him. They knew he would be happier in this environment. And he is.

However, over the past 10 months Brook has gained weight at an amazing rate: three pounds a month. In other words, he was at a reasonable weight, but now he is visibly overweight. His parents are concerned that if he continues to gain weight at this rate, he will soon have trouble walking long distances or develop knee problems, which will limit his activities. When they talk to their son about his weight, he says he is getting too big and that he would like to stop getting bigger. His parents have spoken with the group home manager about encouraging their son to go for a walk and drink less soda or to choose diet soda. At a recent team meeting everyone, including Brook, agreed to build in a walk, a trip to the gym, or some other exercise each day. They also agreed to make other drink options available.

Yet Brook continues to gain weight. They discovered 48 soda cans in his closet. When they ask him about his daily walk, he says, “That’s a good idea. I don’t go on a walk very often.” When his parents ask about the plan to encourage Brook to make healthier choices, they are told, “We give him the choice to exercise every day, but he says ‘no.’ When we offer diet soda or water, he chooses other things to drink.”

What can Brook’s parents do? Brook is making choices that are not compatible with his desire not to gain any more weight. The group home management’s philosophy will not allow for a program in which Brook doesn’t have the option to choose to refuse an activity or choose his own food or drink. Brook’s parents want him to make his own choices about his life, but his long-term health is in jeopardy if he continues this pattern.

Brook’s story is not unique. It is also not limited to living in a group home or to adults. Weight management challenges for people with disabilities occur in every type of living situation: at home, in group living environments, in an apartment with support, or in foster homes. The issues are trapped in principles that create barriers to reaching the same goal: a healthy, fulfilling life for people with disabilities.

Health Literacy

Over the past 20 years, I have received countless email and phone inquiries regarding situations similar to Brook’s. In fact, this story is a composite of those experiences. The greatest challenge appears to be the clash between instantaneous, boundless, self-determined freedom and teaching the concepts that lay the foundation for making informed choices. In the quest to do the right thing, people forget that self-determination and making healthful choices can go together.

This clash between self-determination and health often results in parents and support staff being at polar opposite ends of the issue. On one hand, parents appear to say their children cannot make choices, suggesting a need for control or loss of freedom. On the other hand, support people appear to say they cannot intervene in choice making in any way, suggesting there’s nothing that can be done. A little investigation usually reveals that everyone, including the person with a disability, wants the same outcome. It does, however, require teaching and opportunity for learning.

At the heart of this situation is something called “health literacy.” Health literacy is the ability to understand how and where to get health-related information, understand it, and use it correctly to improve health. It’s a type of functional literacy, similar to learning the meaning of street signs and how to get around in the community. Health literacy is learning how to make informed choices about health.

Teaching about Choices

Health literacy begins with the most basic concept: understanding the choices This process begins early for children with disabilities. The first choices every child makes, regardless of disability, are: “more,” “all done,” and “no way!” Regardless of how they are fed, babies communicate these choices to parents behaviorally. Soon they learn to share this verbally or through sign language. These three statements, regardless of how they are communicated, are very powerful. Using them teaches children they have control over what happens at mealtime.

It is very important to honor each message, including “no.” If your child is constantly saying “no” at mealtime, keep in mind that he is testing you. Always honor that message. He’s looking to see if you are really listening to what he has to say. This doesn’t mean you don’t try again in a few minutes or on another day. By accepting his refusal, your child learns he can trust you to listen to him even if you don’t like what he has to say. In time, this becomes a very important skill for self-protection. At mealtime, it becomes an important skill to have. Too many social opportunities or “rewards” for people with disabilities are focused around food. Learning that you can say “no” is one step toward not eating just because you can.

Expanding the Choices

The meat of nutrition education for a lifetime of healthy choices begins here. Find ways to involve your child in making decisions about what to eat as often as possible. If your child is not yet talking and does not use sign language, there are other ways to offer choices. For example, use photos, symbols, or the actual food items to enable your child to choose.

Snack time is a great time to teach about choices, whether your child is in preschool or an adult. This is because people typically are not ravenous at snack time. Use this opportunity to teach the idea of a healthy snack. Here are some ways to do this:  

• Create a snack menu with options that are acceptable, not perfect. Whatever the snack menu, make sure the foods are available. There’s nothing worse than choosing something that isn’t on hand.
• Teach older children the definition of a healthy, or balanced, snack. A balanced snack is one that has some protein, some carbohydrate, and a little fat. An easy way to do this is to define a snack as including two of the main five food groups (bread, vegetables, fruit, dairy, and meat).
• Create awareness of when it’s appropriate to eat a snack. “Snack” does not mean free eating between meals. Nor is a snack something given to a person to keep them busy. Snacks are something you eat when meals are more than five hours a part. For example, most children who are in school have more than five hours between lunch and dinnertime. The purpose of an after- school snack is to keep your child from becoming over-hungry. As your child begins to take control of his meals, talk about when snacks are appropriate and plan for them.

Involve Your Child

The key to your child learning to take control of eating in a healthy way is to involve him as much as possible. As early as elementary school, children with disabilities enjoy taking charge of their options, and this interest continues over the years. This gives your child the opportunity to practice making decisions with you, first side-by-side, and then later, with the comfort of having you nearby. Soon, your child will be ready to strike out on his own.

There are a number of ways to do this in each day. It usually takes a little planning though. For example,   

• Develop a master list of foods your family likes to eat. Have your child interview members of your family to learn what foods they like and do not like. This becomes your master list for creating menus.
• Let your child be in charge of the menu on a regular schedule. This could be once a month, once a week, or one meal a day. How often you do this depends on how reasonable, rather than stressful, it is for the meal preparer. The trick to this activity is to allow your child to create a balanced menu using the master list of food preferences that have been developed with the family’s or group home members’ input. Be ready to have some unique meals!
• Keep track of food groups eaten. This can be done using a bar graph, a checklist, or by writing foods down and categorizing them later. The purpose is to become aware of whether or not you and your child are eating a balance of the food groups.
• Grocery shop together. Grocery shopping is a great learning experience. There are opportunities to improve literacy skills, number skills, communication skills, and nutrition skills. The more involved your child is, the more he will learn.
• Talk out loud. As you make your own choices about eating—what to make for dinner, whether or not to eat dessert or to have an extra helping at a meal—talk about it out loud. One of the lessons I’ve learned is that mot people with disabilities assume I naturally make the healthful choice. When I talk about how tasty a meal is and debate out loud about whether or not to have another portion, it becomes clear that I, too, struggle (and I do!). By talking out loud, you share that fact with your child in a natural way. If you’re feeling brave, reverse your roles: ask your child’s opinion!

These are just a few suggestions of everyday moments to involve your child in the process of making healthful choices regarding eating. More nutrition education activities for any child, regardless of ability, are available in the book, The Down Syndrome Nutrition Handbook.

Putting it All Together

Let’s get back to Brook, mentioned at the outset of this article. We began by gathering information and making a list of possible education opportunities and goals for everyone involved in Brook’s life: Brook, his direct support staff, his best friend, his parents, and his brother and sister. Everyone provided suggestions: Brook, his parents, his siblings, and his best friend. Some of the options included:

• Walking the dog
• Joining the local gym
• Taking the stairs rather than an escalator or elevator
• Signing up for a sport with Special Olympics
• Signing up for an activity at the community center
• Taking a different route to work
• Using the treadmill while watching a favorite television show
• Cooking for the family one night a week
• Drinking less soda
• Keeping track of what he eats by food group
• Learning about writing a balanced menu, or
• Doing a favorite activity (reading or doing a puzzle) instead of snacking in the afternoon.

In the first weeks, Brook’s goals were modest. He had trepidations that a “food police” might suddenly appear to scold him at every turn. Brook wasn’t the only one at his residence setting goals and changing habits. Everyone set personal goals each week, including the direct support staff. At the end of the week, everyone shared the progress they made. Sometimes goals were easily met. Other times, they were not met at all. In time, Brook began to see that everyone has ups and downs. He became everyone’s cheerleader. He liked the process we had designed. In turn, Brook’s parents learned to appreciate what Brook was learning about being healthy. His enthusiasm was contagious. This support and discussion is a key element to many good weight management programs such as Weight Watchers®.

The Role of the Support Person

T he most successful support uses positive behavior support methods. Focus on what is going well and what has been accomplished rather than what is not. Set attainable, discrete goals with rewards. Talk about options, but do not chastise. If challenged, do not react. For example, if Brook announced he was going to eat an entire half gallon of ice cream for a snack, no one said a word. He gave up within a couple of bites. He didn’t get the reaction he wanted even though it was negative. It wasn’t worth continuing.

The role of the support person is to encourage and coach, not to judge. It’s a very hard role. Some methods for doing this are:  

• Use visual tools. If the person you are supporting is working toward a specific goal for the week, find a way to make progress visual such as charting minutes of exercise, steps per day, or number of sodas consumed (with a set limit).
• Assist with problem solving. Talk about the choices there are to a situation that is difficult. For example, make a list of easy and enjoyable things to do rather than eating: read a book, call a friend, do a puzzle, shoot some hoops, and so on.
• Set a schedule for activities. Few people do well if someone else is choosing when to go exercise. Let the person set the schedule or rearrange it as needed.

These are just a few examples of ways to offer person-centered, structured support to shape new habits. They are much more effective and educative than asking yes or no questions or taking an authoritative approach.

A few months later, it was clear Brook and the direct support staff had made great strides. The change was easy to see in his appearance. He was more active, drinking less soda, and was involved in Special Olympics and a community basketball team at the community center. He made new friends. And, as a result of the many nutrition and health education activities he and his support staff did together, he was more independent, giving Brook more freedom and the staff more time for other activities. He also started a menu planning committee with people living with him and the direct support staff. Brook’s success was a team effort, based on teaching him nutrition-related health literacy skills.

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Sidebar

Resources for Learning and Teaching Health Literacy

The Down Syndrome Nutrition Handbook

Author: Joan Medlen

Phronesis Publishing, 2006, second edition

ISBN 10: 0-9786118-0-2.

Exercise and Nutrition Health Education Curriculum for Adults with Developmental Disabilities ,

Authors: B.A. Marks, T. Heller, and J. Sisirak

2006, third edition

The National Center for Physical Activity and Disability

www.NCPAD.org

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Joan Guthrie Medlen, RD, LD, is a registered dietitian in private practice. Her practice focuses primarily on supporting people who have Down syndrome and related disabilities. Joan   is the Global Clinical Advisor for Health Literacy and Communications for Special Olympics, Healthy Athletes Program and the author of the first book promoting healthy living for people with Down syndrome: The Down Syndrome Nutrition Handbook (Phronesis Publishing, 2002). Joan is the mother of two adult sons, one of whom has Down syndrome, autism, celiac disease, and is nonverbal. For more information: www.DownSyndromeNutrition.com.