For Families and Carers : Weight Management

Common Sense Tips for Weight Management

For many years there has been a myth circulating around the inevitably of people with Down’s syndrome gaining weight. Maybe this persists from the bad old days of institutions and hospitals. There are certainly many people with Down’s syndrome who defy this stereotype by leading very active and healthy lives.  Obesity is not inevitable for people with Down’s syndrome.

Having said that, there may be factors that people with Down’s syndrome have to overcome that are not necessarily present in the wider population (e.g. lower metabolic rate, less physical activity as a result of lower muscle tone and delayed development and hormonal conditions such as hypothyroidism).

Firm foundations

We don’t believe that there are any special approaches or interventions for people with Down’s syndrome where weight is concerned. We suspect that, as with the rest of us, prevention is easier than cure. It is easier to lay the foundations for lifelong healthy lifestyles by early education and building on healthy routines than tackling weight issues later in life. One of the issues raised regularly via our Helpline is one of weight gain when adults leave home and move into more independent living placements. There are no quick fixes in these situations. However, if we are helping children with Down’s syndrome to understand healthy living and to enjoy healthy food and exercise from an early age, we can create deep seated routines that hopefully will be present throughout life. In this way, they may more likely to be proactive about their diet and lifestyle as young adults when they leave home.

‘It’s easier to try and avoid her gaining weight than it would be for her to lose weight. My daughter would eat constantly if allowed; she seems to have no switch that tells her when she is full. I keep her active, she swims at least twice a week and she spends huge amounts of time on her swing and trampoline. But obviously as a family we all try to eat sensibly; sitting down for a homemade meal around the table is great for everyone’

‘Lots of exercise and small portions – same as the rest of us really’

Not all about dieting

A common misconception is that weight management is all about dieting and losing weight when it is more about managing time, food and activity levels. As with anything, focussing on the positives, rather than a punitive approach, is the best way to go. None of us respond very well to being told what is wrong about us! What can be done rather than what shouldn’t be done is the approach that stands the better chance of success.

A young girl cooks up a storm in the kitchenFrom an early age all children will benefit from being offered healthy choices; let them feel that they have some control. We all feel like snacks sometimes; offer your child a choice of fruit or a rice cake for example. Some parents find the use of visual cues around what is healthy versus unhealthy food useful (e.g. grouping foods in a traffic light system). Some adults are very good at knowing when they have had enough ‘red’ or unhealthy food and stick rigidly to their eating plan as a result of being taught with a ‘green’ and red’ food labelling system. Children need to be given choice in other areas of their lives too. One of the issues that we sometimes hear about is people leaving home and going wild with unhealthy food shopping because it’s the first time they have had a choice and they are taking advantage of new found freedom. As they grow up, involve your child in planning meals, shopping for ingredients and in preparing meals. An obvious point, but your child will learn from you as a parent so try to model the behaviours that you would like your child to adopt (easier said than done sometimes when the chocolate bar in the cupboard is calling our name!).
Helping your child to recognise when they are full and modelling good portion sizes (e.g. one cup of cereal for breakfast) are good skills for your child to learn. Buying smaller plates and bowls can be a way of making sure that portion sizes are healthy. Regular set mealtimes with the family can help reinforce the lessons about healthy eating that you want to teach your child.

_MG_0182Exercise, many love it and it makes some of us inwardly groan! The idea of going to a gym would make some of us run a mile in the other direction! The good news is that it doesn’t have to look like exercise in the traditional sense; activity is the important part rather than the location! Fun recreational social activities can provide the benefits of exercise without feeling too much like hard work. Building regular family walks with friends into the week can really help.  Social activities such as dancing or drama groups can be really good motivators for people with Down’s syndrome. Exercise DVDs, particularly those featuring a favourite actor or TV personality, or Wii fitness or Wii workout are enjoyed by many adults.

‘My brother has always stayed fairly slim because his whole life he’s exercised and I think that’s key. You need to find an activity they love and roll with that.’

‘My son joined Special Olympics. He attends a session every night of the week. Athletics, golf basketball, football and dance. Not only helps with his weight but has added so much to his social life’

A woman prepares food in her own kitchenLeaving home

With the best will in the world, it may be that when your child leaves home and moves into a more independent environment they gain weight. There are no quick and easy fixes in these situations. What seems to work best is small changes to lifestyle consistently applied over time rather than larger unrealistic changes and goals. Parents tell us that peer mentoring, clubs such as weightwatchers, food diaries and visual timetables with targets can all be useful tools in weight management. There is further advice about weight management when someone leaves home in our resource ‘Handling Problems’. This can be downloaded from our website.

‘We went to our GP who gave us a free 3 months subscription to Slimmer’s world or Weight Watchers. We did not stick to it rigidly but my daughter has lost 2 stone over 12 months and is looking and feeling great. We had tried many different things previous to this but nothing seemed to make a difference.’

‘My brother was weighing in at 17st 8lb at the age of 24/25. I decided to take him to my house for a few weeks as I was getting worried about the impact of his weight on his heart. I made sure we had three regular meals a day and that he and I did two sessions a day on the Wii Fit. Within two weeks he was an incredible 15st 4lb. He’s my Champ!’

Final tip:

Learning Disability Nurses can be a great resource to tap into if you have concerns about your child’s weight. You can access them via your local Community Learning Disability Team.

Useful DSA Resources

  • DSActive 
  • Healthy Eating (Easy Read)
  • Exercise Routine (Easy Read)
  • Healthy Eating (Parents & Carers)
  • Exercise Routine (Parents & Carers)

Free to download here 

Other Resources

The Down Syndrome Nutrition Handbook – A Guide To Promoting Healthy Lifestyles by Joan Guthrie Medlen (Woodbine House, 2006)

The Guide to Good Health For Teens and Adults With Down Syndrome by Brian Chicoine & Dennis McGuire (Woodbine House, 2010)

Diet, Weight and Exercise (Easy Read) – Available from Down’s Syndrome Scotland 

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