Weight Management in Down Syndrome

Joan E. Medlen, R.D.
Disability Solutions, November/December, 1997 Volume 2, Issue 4, p. 10-13; January/February, 1998 Volume 2, Issue 5, p. 9-12; March/April, 1998 Volume 2, Issue 6, p. 11-14
© Copyright 1996-1998
ISSN: 1087-0520 Printed with the permission of Joan E. Medlen, R.D., Editor
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Weight Management in Down Syndrome: The Early Childhood Years
A common concern for families of children with Down syndrome is weight management. Since many people have a stereotypical opinion that people with Down syndrome are obese and Americans aren't the leanest group of people overall, this is a reasonable concern.
Preventing obesity through an active lifestyle, nutrition education, and emotional support from family and friends is the ideal answer. In a perfect world, this begins in early childhood. Great idea, but not always easy to put into practice. This is part one of a series of three articles promoting sound weight management and food-related habits in:

Recent research suggests that children with Down syndrome have a lowered resting metabolic rate than their friends who are the same age.¹ This means that children with Down syndrome use fewer calories when they are asleep than children the same age. This probably isn't going to change as they get older. The same research showed that children with Down syndrome are just as active as other kids their age during the course of the day. Additionally researchers found that, like other children their age, when making their food choices without adult direction, children with Down syndrome chose foods that met their overall caloric needs and were nutritionally balanced over time. However, because their overall calorie needs were lower, the total amount of food chosen was less.² This means they may be at risk for vitamin and mineral deficiencies. These deficiencies are best met by supplementing with a standard over-the-counter multivitamin rather than over-management of food choices.
Clinically, there are different categories to describe a child's weight:

Appropriate: within 90-110% of desired weight.
Overweight: 111-120% of desired weight.
Obese: > 120% of desired weight.
Morbidly Obese: > 200% of desired weight.

Chances are parents already have an idea where their child fits on the scale. If not, adapted growth charts for children are widely available in books like Babies with Down Syndrome: A New Parent's Guide (p. 105-108)³, or off the Internet at: http://www.growthcharts.com/charts/DS/charts.htm. Beyond the 95^th percentile, an educated guess is probably sufficient. Also, if a child is beyond the 95^th percentile for weight, that does not mean they are above their desired weight. For instance a child can be off those charts for both height and weight, and not be overweight. The most important use of growth charts, especially in the younger years is to look for unexpected changes in how children are following the growth curve. An unexpected drop from over the 95^th percentile to the 50^th percentile is just as worrisome as an unexpected jump from the 50^th percentile to the 95^th percentile.
It is difficult to hear these medical categorizations attributed to a child because of the emotions we feel when we hear the terms "obese" and "morbidly obese." Remember, they are simply words that describe a condition. The real question is "What to do about it?"
As with everything, it is best to begin at the beginning. First, check with your pediatrician to eliminate any medical reasons that might cause a child to be overweight such as a low thyroid level. If there are no medical concerns, then the child is usually overweight or obese because there is an imbalance to the energy equation. The amount of energy taken in is greater than the amount of energy going out. There are three ways to begin to balance this equation:

Increase energy-out through activity,
Decrease energy-in by limiting calories, or
Both increase energy-out through activity and decrease energy-in by limiting calories.

A focus on calories alone is not only risky for children's health, but it focuses too heavily on food. All children have great vitamin, mineral, protein, carbohydrate, and energy needs while they are growing. Limiting calories may cause children to get too few of what they need to develop well. An abnormal focus on food can also become an obsession over time. However, increasing activity not only burns more calories, but it has long-lasting health benefits such as increased muscle tone, increased metabolism, decreased resting heart rate, better sleep, and an overall sense of well-being. Therefore, the best approach is to focus on healthy food habits to fuel the body and to promote activity.
When working with overweight children with and without Down syndrome, the goal is to maintain the child's current weight while they grow rather than losing pounds. As they grow, their height will be more appropriate for their weight. With this in mind, let's look at some of the more important concerns in early childhood.
Ellyn Satter, a registered dietitan and certified social worker, has done significant work and research into the food choices, attitudes, and the feeding relationship between adults and children.⁴ Her research found that over time, when taught to listen to their body regarding hunger and food, children chose foods that met their nutritional needs for calories and vitamins and minerals over time, just as the children with Down syndrome did in the study discussed earlier. The trouble is, parents have preconceived ideas about what, when, and how much a child should eat. Her recommendation is to define the roles of the feeding relationship in the following way:

Adults are responsible for what is presented to eat, where it is presented, and when it is offered.
Children are responsible for how much and even whether they eat the food offered.

The only change to this philosophy for children with Down syndrome is the addition of an over-the-counter multivitamin to accommodate for potential micronutrient deficiencies. This philosophy is particularly helpful when dealing with overweight children or changing food habits. As the "food battle" begins, parents have a rule to follow rather than a situation to control.
     The early childhood years (ages 2-6) are loaded with challenges for children with Down syndrome. Some transition from being land rovers (crawling) to running (what happened to walking?). Some will transition from using sign language as their primary communication tool to verbal approximations. Others will begin working with pictures and voice output devices. Most will discover the novelty of friends, experience their first preschool, and, to most parents chagrin, discover the word "MINE!" And they will all learn how to wrap Mom and Dad lovingly, but deviously, around their little finger.
     What a busy life they lead. Regardless of their weight, the most important thing parents can do during this time and throughout their child's life that will affect their weight is to build their self-confidence and self-esteem. For the child who is overweight, this may be the most effective tool a parent has to offer. This is when the responsibilities of the feeding relationship mentioned above become an essential tool. The responsibility of parents is to feed children lovingly and responsibly. It is not to monitor how many servings of vegetables are eaten in a day, whether or not they cleaned their plate, or if they ate brownies over at their friend's house. It is the parent's responsibility to provide a structure for food choices and eating habits that is healthy, consistent, and without judgment.
     Some ways to create this structure include:

Providing scheduled meal and snack times. Children need to know that food is going to be provided. If meal and snack times are inconsistent, they may hoard food at mealtime or snack time because they worry about being hungry.
Limit eating to a few areas of the house. This keeps everyone from eating in front of the TV, and discourages grazing (constantly eating throughout the day). It also keeps the house cleaner!
Let kids help prepare meals and snacks. Meal and snack preparation are the perfect time for some fun learning experiences. Cooking provides many opportunities for grouping (group foods by size, color, or type), one-to-one correspondence (setting the table), and promotes lots of fine motor activities. Picking up nuts to put in the bread machine is just as much fun as putting Fruit Loops in an egg carton and the result is bread for dinner! The more comfortable kids with Down syndrome are around food, the more competent they will be at making their own food choices later in life.
Do not use food as a reward. This can be difficult for parents of kids with Down syndrome because of all the people involved in their lives. Discuss how to handle rewards without using food with school personnel, private therapists, and babysitters. If a child learns that certain foods are special by receiving them as a reward for good work, they will likely carry that into their adulthood.
Do not offer food unnecessarily. If a child falls off the swing at the playground or has his feelings hurt by a playmate, do not comfort him with freshly baked brownies. Also, do not offer high sugar drinks like soda and juice to quench thirst when water will do. Calories add up quickly when you drink apple juice whenever you're thirsty!
Remember there are some situations that are nutritional "goners." Sleepovers at Grandma's house, holiday gatherings, and birthday parties are situations where every child eats differently. If a child is behaving like all the other kids and the only reason to step in is his weight, don't do it. Let him be a child. Food is one of the great social equalizers. Kids with Down syndrome need those moments to build strong friendships that will last when they get to elementary school.

In addition to these food-related goals, it is important to be active as a family. Find games and activities that can be done as a group such as tag, going for walks, swimming, or riding trikes and bikes. Being an active family will introduce activity to a child's life as a fun thing to do. Although activity plays an important role in normal eating patterns and overall good health, at this age, it is not imperative. For the overweight child with Down syndrome, the relationships that are built in the process are the most important part of the activity. This is another way to build self-confidence and self-esteem.
The most important thing to remember is that any changes made must be gradual, long-term, and for the entire family. Young children with Down syndrome who are overweight do not need to be put on diets. They do not need their food micro-managed. They need parents who set boundaries and provide the security of structure regarding food. They will be most effective at managing their food choices and many other choices in life if they believe in themselves and their abilities. It is in these early years that we, as parents, can build a strong foundation for all the challenges that lie ahead, including food.

References:

Luke, A., Roizen, N.J., Sutton, M., Schoeller, D.A. "Energy Expenditure in Children with Down Syndrome: Correcting Metabolic Rate for Movement."Journal of Pediatrics, Vol. 125, 1994, 829.
Luke, A., Sutton, M., Schoeller, D.A., Roizen, N.J. "Nutrient Intake and Obesity in Prepubescent Children with Down Syndrome. Journal of the American Dietetic Association Vol. 96, 1262.
Stray-Gunderson, K. Babies with Down Syndrome: A New Parents Guide. Second Edition Woodbine House, 1995.
Satter, E. How to Get Your Kid to Eat But Not Too Much. Bull Publishing, 1987.

Nutrition Books and Activities for the Early Childhood Years
How to Get Your Kid to Eat, But Not Too Much. Ellyn Satter, R.D., ACSW. Published by Bull Publishing Co. 1987. ISBN 0-915950-83-9. $14.95

Eating the Alphabet: Fruits and Vegetables from A to Z. Lois Ehlert. Published by Harcourt Brace Jovanovich, 1989. ISBN 0-15-224435-2. $4.95.

Kids Cooking: A Very Slightly Messy Manual. The Editors of Klutz Press. Published by Klutz Press, 1987. ISBN 0-932592-14-7. $13.95.

Learning to Set the Table Placemats: Set of 4 and Matching Dish Set: Set of 4. A set of placemats with outlines for where dishes go in a place-setting for a meal. The Dish set exactly matches the outline on the placemats. Available from Lakeshore Learning Materials. (800) 421-5354. Item #LC64, $14.95 and Item # LDA178, $14.95.

Vegetable Lotto. A wooden lotto game for various vegetables. Available from Nasco Nutrition Teaching Aids. 4825 Stoddard Rd., Modesto, CA 95356-9318. 209/545-1600. Web: http://www.nascofa.com email: info@nascofa.com. Item #SB2536HR $13.80.

Yummy 5-A-Day Fruit and Vegetable Game. A Lotto Game. Available from Nasco Nutrition Teaching Aids. 4825 Stoddard Rd., Modesto, CA 95356-9318. 209/545-1600. Web: http://www.nascofa.com email:info@nascofa.com. Item #WA17205HR. $19.00.

Classroom Cooking From A-Z. An entire set of activities and tools (alphabet cookie cutters, measuring cups, and so on) for edible activities that teach the alphabet. Includes a recipe box with a recipe for every letter of the alphabet. Available from Lakeshore Learning Materials. (800) 421-5354. Item LC622. $49.95.

Weight Management in Down Syndrome: The School Age and Adolescent Years
     The first article in this series focussed on weight management in the early childhood years. The emphasis during those years is on establishing the feeding relationship and setting boundaries that promote a healthy lifestyle. This article will focus broadly on the school age and adolescent years.
     Parents of children with Down syndrome have a multitude of hopes and dreams for their children as adults including living independently, cooking healthy meals, being active, and making smart lifestyle choices. As parents, we want our kids to have it all. In the past, many of the skills needed to accomplish these goals were taught in the special education or life-skills classes. For instance, a unit in a life-skills course often covers grocery shopping, menu planning, some cooking skills, and leisure plans. However, as more children are included in regular education classrooms, these skills are not routinely taught. Children with Down syndrome will receive the same quick, fragmented nutrition education as other students, leaving them to try to decode confusing and often inaccurate messages from commercials, movies, and their friends.
     In a perfect world, successful and realistic weight management for persons with Down syndrome is preventive in nature. Research and observation show that children with Down syndrome are at a greater risk to become obese. Their bodies use fewer calories to do the same activities as their same-age peers. Preventing obesity or limiting weight gain through the foundation of a healthy lifestyle, is the only reasonable option. However, weight management and healthy lifestyles do not happen magically; they are learned. That means that this foundation to a healthy lifestyle must be strategically presented in a way that is meaningful and lasting.      Fortunately families are not limited to what occurs in the classroom or on the playground to encourage healthy lifestyles. Parents can make a significant difference in the lives of everyone in the family by creating an environment that promotes healthy lifestyles.
Some key elements to consider are:

An attitude of complete acceptance. This is especially important if your child is overweight. Do not be obsessed with your child's weight, food choices, or the negative consequences of being overweight. Children with Down syndrome need to know that relationships are not contingent on how much they weigh or what they eat. It is important to discuss your concerns without becoming "the food police."
Model the expected behavior. Children with Down syndrome learn by watching those around them. The most powerful tool available to parents to influence children's choices is being healthy and active themselves.
Allow your child to make choices. Do not ignore your child's food preferences in the pursuit of good nutrition. Provide an array of choices that have something everyone likes along with new foods to experiment with. Create a win-win situation at mealtime as often as possible. The more a child with Down syndrome feels they are in control of successful situations, the more they will continue to make similar choices when on their own.
Create opportunities for successful independence. Whenever possible, set up situations that allow for independence in food and activity.

With these attitudes and strategies in mind, there are countless areas parents can work on to teach the skills and build the confidence a child with Down syndrome needs to independently make smart choices. The examples in this article focus on three areas: snack choices, menu writing, and routine activity schedules.

Snack Choices and Menu Writing
Similar to the early childhood years, school-age children and adolescents with Down syndrome (ages 7-16) need the security of boundaries regarding food choices. These boundaries, established by the feeding relationship, create opportunities for success and independence.
Building confidence and independence in food choices is best done through practice, the earlier the better. Start by creating a list of each person's favorite foods (see table 1). This list, arranged by food groups becomes a tool for structuring menu planning and snack choices. Update the list periodically to allow for changing tastes and fads. There are a variety of ways to use this information that provide practice for making smart food choices.

Breakfast Lunch & Dinner Fruits Vegetables Bread, Cereal,
& Grain Snacks &
Sometimes Foods

pancakes
french toast
corn flakes
muffins
toast
hot chocolate
orange juice meatballs
pizza
stir fry
mac & cheese
PB & J
soup
lasagna
chili
lentils peas (canned)
banana
grapes
oranges
star fruit
kiwi
berries raw:
brocoli
carrots
celery
jicama
peas
snow peas
cooked:
brocolli
corn
gr. beans bagels
dumplings
stuffing
homemade rolls
french bread
barley
biscuits pretzels
popcorn
popcorn cakes
chips
nachos
ice cream
reg. soda
granola bars
candy
cookies

Table 1: Family Favorite Worksheet

After School Schedule: Kids Who Come Straight Home

Arrive home: Time to go through backpacks, hang up coats, and share the events of the day. (10-20 minutes)
Transition time: A few minutes to rest, listen to music, or talk. (10 minutes)
Snack (10-20 minutes)
Physical Activity: Time for some exercise. Kids have been in class all day and need to burn off some energy. Some suggestions are playing ball, tag, indoor kickball with balloons, and dancing. (30-45 minutes)
Homework: Kids can start homework while dinner's being prepared. If your child is too young for homework, play a lotto game, color, or read a book together. This is a good place to work in menu planning or nutrition-related games. (as long as it takes)
Chores: There's a lot to learn and many calories to burn through household duties. Teach new chores together. Some suggestions are: setting the dinner table, after dinner clean-up, folding laundry, and vacuuming.
Teenagers who are sometimes on their own will need a written schedule with expectations and suggestions.
Limit television to one hour each day.

Table 2

Table 1: Family Favorite Worksheet
Breakfast	Lunch & Dinner	Fruits	Vegetables	Bread, Cereal, & Grain	Snacks & Sometimes Foods
pancakes french toast corn flakes muffins toast hot chocolate orange juice	meatballs pizza stir fry mac & cheese PB & J soup lasagna chili lentils	peas (canned) banana grapes oranges star fruit kiwi berries	raw: brocoli carrots celery jicama peas snow peas cooked: brocolli corn gr. beans	bagels dumplings stuffing homemade rolls french bread barley biscuits	pretzels popcorn popcorn cakes chips nachos ice cream reg. soda granola bars candy cookies

Table 2
After School Schedule: Kids Who Come Straight Home Arrive home: Time to go through backpacks, hang up coats, and share the events of the day. (10-20 minutes) Transition time: A few minutes to rest, listen to music, or talk. (10 minutes) Snack (10-20 minutes) Physical Activity: Time for some exercise. Kids have been in class all day and need to burn off some energy. Some suggestions are playing ball, tag, indoor kickball with balloons, and dancing. (30-45 minutes) Homework: Kids can start homework while dinner's being prepared. If your child is too young for homework, play a lotto game, color, or read a book together. This is a good place to work in menu planning or nutrition-related games. (as long as it takes) Chores: There's a lot to learn and many calories to burn through household duties. Teach new chores together. Some suggestions are: setting the dinner table, after dinner clean-up, folding laundry, and vacuuming. Teenagers who are sometimes on their own will need a written schedule with expectations and suggestions. Limit television to one hour each day.

Set up a snack choice system. Using a collection of foods from the family favorites list, provide an array of healthy and not-so-healthy snacks (no one is healthy all the time). After school, she may choose one snack choice. Take time to discuss the available choices, food groups, and the appropriate serving sizes.
Encourage appropriate serving sizes and food budgeting. Stock the snack shelf or drawer with a one-week supply. Be available to discuss your child's choice at first, slowly lessening your involvement. If the snacks run out before the end of the week, they must wait for the snack options to be replaced the next week.
Let your child help create the snack menu from the list of family favorites. Highlight the foods on the list that are snack foods. Be sure to add new foods to the list of possibilities. Have her choose a specific number of snack foods from each food group to emphasize the importance of balance in food choices.
Involve older children in menu planning. This is usually harder on the parents than the kids. A nutritionally balanced meal includes at least three of the five food groups (the "sometimes" group is excluded) from the food guide pyramid. For instance, a meat and bean burrito with a tossed salad uses the grain, vegetable and meat groups. It is nutritionally balanced. Remind your child to include foods equally from other family members favorites, not just their own.

Focussing discussions on an understanding of food groups and using a variety of foods for good health encourages wise food choices. The Food Guide Pyramid is a useful teaching tool for promoting balance, encouraging independence, and avoiding the "good food vs. bad food" theme. There are also many inexpensive nutrition-related games available (see resources below) that may be helpful.

Routine Activity

After School Schedule: Kids in After-School Care

Transition time: hang up coats, find classroom, and so on. Many programs have a circle or reading time to begin the afternoon.
Snack: Investigate the facility's menu. If the snack choices are not acceptable, do not single your child out by demanding special snacks. Offer to work with them or make donations to improve the menu for all the children.
Physical Activity: Be direct with the staff about your expectations for your child. Sending everyone out to the playground for free play is easy, but the only aerobic activity is running between equipment. Talk to the staff about encouraging games that will be fun for everyone: dancing, organized tag, and other group activities.
Homework: Find a study buddy for your child. If your child is younger, ask if a child from an older age group could read, color, or play educational games with your child. Send nutrition-related games and activities that can be copied for everyone.
Going home: Time to share the events of the day.
Transition time: Allow for a few minutes of free time to talk with you, listen to music, put things away, and so on.
Chores: For kids in after school care, the most helpful chores are probably related to meal preparation and clean up.
Limit television to one hour each day.

Table 3
     From the parent point of view, letting kids be inactive is the easiest thing to do. It requires little planning, time, or money. After a long day of work, dealing with friends and family, pulling together meals, and completing household chores, the easiest choice is to let kids entertain themselves. Most likely, they will fill up their time with television, computer games, homework, and free time.
     However, children with Down syndrome need to be taught how to use their time in a constructive and healthful manner. After school activities, team sports, and Special Olympics can fill some of their time, but it is limited to season and other schedules. One solution is to build an after school routine that has structure and limits sedentary activity. These after school routines provide a framework that helps children use time wisely, discourages long periods of sedentary activity (watching television or playing computer games), and encourages families to spend time together.
     For parents of children with Down syndrome, these after school routines will require planning and time by parents and caregivers. Careful thought must be given to providing support and encouragement. Children who go home directly after school (see table 2) will have slightly different options than children who go to after school care (see table 3). It may be helpful for parents of children who come directly home to hire a high school or college student to help once a system is in place. Weekends are a good time for activities that everyone can be involved in: hiking, walking, biking, and so on.
     All of these suggestions for food and activity choices look wonderful on paper. Parents of kids with Down syndrome lead busy and sometimes stress-filled lives as they deal with the usual parenting concerns along with private therapies and managing their child's I.E.P. However, those I.E.P. meetings come in handy. As you plan for changes within your family, take advantage of the information you have learned from teachers and therapists at I.E.P. meetings and private therapy. For instance, if your child needs a picture system, many of the menu planning and food choice ideas can be done with simple drawings. Or, if your child needs some cues for setting the table, there are placemats that have the position for each item printed on them or you can mark where things go on the table with masking tape.
     Most important, focus on the improvements everyone has made rather than the imperfections of food and activity choices. Creating a healthy lifestyle does not mean a perfect lifestyle. Continue building on your successes and the successes of your family one-step at a time. Set goals for changes that are important, yet small and easy to accomplish. Remember to reward yourself and your children in ways that are supportive of a healthy and active lifestyle, such as exercise clothes, books, or music. Most importantly, keep in mind that healthy lifestyles don't just happen; they are taught. If kids with Down syndrome learn healthy habits in the school age and adolescent years, there will be less to re-learn as they prepare to live on their own. Every step, no matter how small, is a step toward building healthy habits and healthier futures.

Table 3
After School Schedule: Kids in After-School Care Transition time: hang up coats, find classroom, and so on. Many programs have a circle or reading time to begin the afternoon. Snack: Investigate the facility's menu. If the snack choices are not acceptable, do not single your child out by demanding special snacks. Offer to work with them or make donations to improve the menu for all the children. Physical Activity: Be direct with the staff about your expectations for your child. Sending everyone out to the playground for free play is easy, but the only aerobic activity is running between equipment. Talk to the staff about encouraging games that will be fun for everyone: dancing, organized tag, and other group activities. Homework: Find a study buddy for your child. If your child is younger, ask if a child from an older age group could read, color, or play educational games with your child. Send nutrition-related games and activities that can be copied for everyone. Going home: Time to share the events of the day. Transition time: Allow for a few minutes of free time to talk with you, listen to music, put things away, and so on. Chores: For kids in after school care, the most helpful chores are probably related to meal preparation and clean up. Limit television to one hour each day.

References:

Sattyr, E. How to Get Your Kid to Eat But Not Too Much, Bull Publishing, 1997.
Medlen, J. "Looking At Metabolism," Disability Solutions Volume 1:3, 1996, p. 10-11.
Epstein, L.H. "Family Based Behavioral Intervention for Obese Children." International Journal of Obesity Related and Metabolic Disorders, Vol 20, 1996, p. 514-521.
Fick, D, Goff, S.J., "Blending Exercise Into Family LIfe." The Physician and Sports Medicine, Vol. 24:2, 1996.

Nutrition & Activity Resources
Pyramid Explorer: Nutrition Adventures. Oregon Dairy Council-Nutrition Education Services, 1997. CD-ROM software (PC & Mac). Available from the Oregon Dairy Council, 10505 S.W. Barbur Blvd., Portland, OR 97219. (503) 229-5033. $49.00
Pyramid Explorer is a CD-ROM with four fun, game-like modules to teach nutrition-related concepts. The CD-ROM package comes with a teacher/leader booklet to help guide activities.

Mealtime Game. Oregon Dairy Council-Nutrition Education Services, 1995. Available from the Oregon Dairy Council, 10505 S.W. Barbur Blvd., Portland, OR 97219. (503) 229-5033.
This game gives families ideas for new traditions, easy games, and conversations to enjoy while sharing meals. They can be done as a family, or as a group activity at school or with after-school groups.

How to Teach Nutrition to Kids: An Integrated, Creative Approach to Nutrition Education for Children Ages 6-10. Connie Liakos Evers, MS, RD. Published by 24 Carrot Press, 1995. ISBN 0-9647970-3-8. $18.00.
How to Teach Nutrition to Kids is written for classroom and school foodservice personnel. There are many activities for group education that reinforce sound nutrition as well as writing, math, reading, and other skills. It is a good book for after-school care programs wanting to provide enriching nutrition-related activities for kids. Activities will need adaptation for the student with Down syndrome.

The Presidential Sports Award Program. P.O. Box 68207, Indianapolis, IN 46268. (317) 872-2900. $6.00.
The Presidential Sports Award Program is a self-monitored program of regular exercise chosen by the participant. After meeting the criterion for one of many categories of activities (walking, running, biking, hiking, swimming, and so on), participants mail in a log detailing their efforts along with $6.00 to receive a patch, luggage tag, certificate of achievement signed by the president, and a letter of congratulations from Arnold Schwarzenegger. For some, this is a handy motivation tool for increasing activity.

Weight Management in Down Syndrome: The Adult Years
Weight management is something that everyone would benefit from understanding early in life. The first article in this three-part series looked at the importance of the feeding relationship to a healthy lifestyle and early eating habits for young children with Down syndrome. The second article looked at concerns of the school-age and adolescent years: carefully building independence and modeling the habits that shape a healthy attitude toward food and activity. This article, the last of the series, continues to focus on issues that are relevant to weight management and Down syndrome, with an emphasis on concerns that arise in adulthood. For adults with Down syndrome, weight management involves more than the physical changes of maturity. It is a complex mix of community involvement, friendships, daily routines, living situations, activity, and food choices along with the physical challenges of age. This article will explore many of these influences and how we, as parents, family, and support people can encourage adults with Down syndrome toward a healthy lifestyle.

The Effects of Metabolism
Research suggests that children with Down syndrome have a lower basal metabolic rate (BMR) than their same-aged peers. BMR is the rate a person burns calories for fuel when completely at rest—or sleeping. As a result, a child with Down syndrome uses fewer calories while they are asleep and also throughout the day.^1,2 In addition, adults with Down syndrome (ages 18-20) have finished growing and require fewer calories than they did as a child. If eating or exercise habits do not change to compensate for this decrease in energy requirements, the energy equation quickly becomes unequal with Calories in outweighing Calories out.

Slowing or Stopping the Rate of Weight Gain
     If your child is still gaining weight consistently, focus on stopping or slowing that upward trend. This is a quick fix, however, and only meant as a detour while the two of you consider other factors and make changes. To do this, it is important that your adult child understands and shares your concern regarding his weight gain and overall health. Without him on your team, you will be waging a losing battle. Working together, success is far more likely.
     The first thing to do is to visit with your family doctor to rule out any medical causes of weight gain such as hypothyroidism. Be certain to ask if there are any physical limitations to be considered if your child decides to increase his physical activity. Once the physician has given you the "green light" for lifestyle changes, your child and you can begin to create a plan together for a healthy lifestyle.
     To slow or stop weight gain, begin by choosing an area of the energy equation to modify. Keep in mind you're not trying to accomplish weight loss at this time. Focus on beginning healthful habits that your adult child is willing to do. Some areas to consider are:

Increasing activities such as walking, and using stairs,
Confining eating to designated areas,
Balancing meals,
Planning snacks rather than eating uncontrolled, and
Menu planning.

Usually small changes in any one of these areas will slow or stop consistent weight gain. Do not try to create perfect habits. Accept and encourage any changes, no matter how small, your child is willing to make. Many times the most effective initial change to encourage is an increase in activity. A walk around the block for each 30 minutes of television watched is very effective in our culture. Increasing activity has some other health benefits that may spill over to other areas as well. They include, but are not limited to:

An increase in positive attitude,
An increase in metabolic rate after exercise,
A decrease in appetite,
An Increase in lung capacity,
A decrease in resting heart rate,
An increase in muscle mass and muscle strength, and
A decrease in blood pressure.

Once you have both agreed on a plan to slow or stop weight gain, it is time to move on to the next step: evaluating and shaping opportunities for choice and control regarding food and activity.

Mia Peterson and Mitchell Levitz check on dinner
Making Lifestyle Changes: Who Decides?
In the past, when a medical intervention was needed for a person with Down syndrome, a professional stepped in to create a plan or a treatment to correct the situation. Basically, weight management was done to them. This can happen in any living situation, and still does.^3,4 Many well-meaning parents and professionals deny adults with Down syndrome control over their food choices by mandating a strict menu, a dietary restriction, or an exercise regime. This rarely leads to long-term success in weight management. In fact, if the person with Down syndrome is not involved in the decision-making process, it might lead to rebellious choices such as covert eating or uncontrolled eating at social gatherings in an effort to regain control of food choices. For this reason, it is wise to avoid "diets" and "treatment plans" by involving the person with Down syndrome in discussions about weight and overall health promotion and letting them take the lead in the decision-making process.
One way to begin identifying potential areas for change is to evaluate the living situation of your adult child and try to create opportunities for choices and control that include healthy options as much as possible.

In Group Settings:
Meet with the owner or manager of the living group to discuss your concerns. Consider asking the following questions:

Are the people who live in the group home involved in menu planning? Cooking? Shopping?
Does the menu structure allow for more than one entrée and a variety of side dishes for each meal?
Does the support staff model and encourage healthy choices?
Is there a variety of healthy foods available for snack choices?
Are opportunities for physical activity such as low-impact aerobics, walking, or biking available? How often?

Once you have asked these questions, share the options with your child. Emphasize that he is in control of his options by pointing out the areas he has choices to make.

Living at Home with Family:
Ask yourself this question: Is better health a priority for everyone who lives in your home? It is important to send a consistent message regarding healthy habits to your child with Down syndrome. If it is, gather as a family to discuss what changes each person would like to make for a healthy lifestyle. Most families do not have weekly menus, but now would be a good time to begin using them.
Together, create menus for meals and snack choices. Most meals (breakfast and lunch in particular) can be written to include different options for varying needs in the family. The point of the menu is to ensure that only foods the family agrees upon are in the home. Involve your adult child in cooking and shopping activities.

Supported and Independent Living:
Menus are very helpful for adults with Down syndrome living independently. However, they must be written by the self-advocate. Encourage using a variety of foods in menu planning. When cooking for one or two, or when cooking is a lot of work, it is easy to only make a few things that are favorites like macaroni and cheese, peanut butter sandwiches, and other easy-to-prepare dishes. One way to encourage experimentation with new recipes is to plan a dinner together once a month. The theme of the meal is trying new recipes. It is easier to try something new with a companion. Together, you can choose a new recipe to try, create the menu for the night, shop for what is needed for the recipe, provide support to your child learning the recipe, and live the adventure of tasting this meal together. If it is good, then begin adding it to the menu once a month.
In this living situation, parents and support people have the least influence or control over what actually happens. However, menu planning, when done by the person with Down syndrome with support, only as needed, not only provides structure, but also makes shopping and budgeting much easier because it is planned in advance. By planning ahead using a menu, the foods needed for recipes are on the shopping list, and therefore available when it's time to cook them. Menu planning is the best defense against developing the habit of standing in front of the cupboards trying to decide what to cook. Cupboard-side menu planning typically leads to fast foods or skipped meals.

Food Pyramid Nutrition Guidelines: A "Rule of Thumb" Approach
As a parent or support person, it is helpful to have an idea of the most basic concepts for healthy eating. Use these guidelines to assist you:

Plan for and eat three meals a day.
Time those meals so they are not more than 5 hours apart. If meals need to be longer than 5 hours apart due to work or school schedules, plan for a snack.
Each meal should consist of 3 out of the 5 food groups for overall balance.
Each planned snack should consist of 2 out of the 5 food groups for overall balance.
Don't go out of your way to plan for the "sometimes/others" group (the sixth group at the top of the pyramid). They seem to find their way into menus on their own.
Encourage your child to take one-half of the portion they feel like eating. When that is gone, have them set the timer for 15 minutes. If they are still hungry after the timer goes off, then seconds are in order.

These guidelines will ensure overall nutritional balance throughout the day while leaving room for food preferences and individual decisions. Teaching adults with (or without) Down syndrome to choose within these parameters because they are healthy for everyone will promote healthful choices without feeling restrictive. If you are worried about the nutrients that may be missed by food choices, an over-the-counter vitamin will take care of any nutrients that are missed.

Activity & Friendships: Essential Pieces of the Puzzle
The last area to consider, though just as important, is activity. What kind of opportunities does the adult with Down syndrome have to create new friendships, socialize with old friends, and participate in recreational activities? In a recent study, researchers found a correlation between friendships and opportunities for recreation and the body mass index (BMI) of adults with Down syndrome.⁵ BMI is a measurement used to assess body weight and health risks using body weight and body fat.⁶ This study suggests that for adults with Down syndrome, friendships and social interactions have a more consistent and direct effect on BMI than diet and exercise. This is a very strong message. It suggests that better health and weight management for adults with Down syndrome must include the element of friendships and social recreation in addition to the usual healthy lifestyle choices (eating and exercise) to be successful. Friendships and opportunities for recreation are "inextricably linked" to overall health.
As a dietitian and mother of a child with Down syndrome, I see this as an opportunity to create some healthful options for people with and without Down syndrome now and in the future. Once again, it will require advocacy by parents, parent groups, and professionals to be successful. Some places to consider beginning include:

Joining walking or Volksmarch clubs, especially those associate with a hospital,
Offering community aerobic classes at the group home or nursing home,
Doing aerobic tapes with friends at home or in apartments,
Joining local health clubs and buying YMCA memberships,
Hiring a personal trainer at a health club or YMCA to work with a two or three adults with Down syndrome as a small group,
Joining a hiking group for beginners,
Creating an exercise buddy system with friends and relatives, or
Walking the dog with a group of dog owners.

Although it is important to promote healthy eating habits, the nutrition and activity pieces to the puzzle of weight management for adults with Down syndrome are relatively easy. The harder pieces to fit into place are the ones we cannot dictate or force: choosing to eat wisely, choosing to be active, and cultivating the friendships that complete the puzzle of a fulfilling and healthy life for our children. The best we can do is to ensure the tools for a healthy lifestyle are taught, available, and encouraged in a positive way, and encourage friendships and recreation throughout their lives.

References:

Luke, A., Roizen, N.J., Sutton, M., Schoeller, D.A. "Energy Expenditure in Chidren with Down Syndrome: Correcting Metabolic Rate for Movement." Journal of Pediatrics, Vol. 125, 1994, p. 829.
Medlen, J. "Looking at Metabolism." Disability Solutions, Vol. 1, 1996, p. 10.
Daley, W. "Dealing with Obesity in Community Living Arrangements." AAMR News and Notes, Vol 9, 1996, p.?.
"Letters to the Editor." AAMR News and Notes, Vol.10, 1997, p. 2.
Fujiura, G., Fitzsimons, N., Marks, B., Chicoine, B. "Predictors of BMI Among Adults with Down Syndrome: The Social Context of Health Promotion." Research in Developmental Disabilities, Vol. 18, 1997, p. 261.
Duyff, R.L., The American Dietetic Association's Complete Food and Nutrition Guide. Chronimed Publishing, 1996. p. 20.
BoardMaker icons used with permission of Mayer-Johnson, Co., P.O. Box 1579, Solana Beach, CA 920750-7579. (619) 550-0084.

Joan E. Medlen, R.D. is a registered dietitian and mother of two boys, one of whom has Down syndrome. Joan is a private consultant and an editor. She resides with her family in Portland, Oregon.


	Revised: September 25, 1999.