Four Stories: Parents and Children Working Towards Healthy Weight
A short collection of stories from parents who are working with their children to work towards healthy weight.
Alex is a 12 year old boy with autism who seemed to be a typically developing child until about age 4, when, his mother says, “He kind of fell off the planet.” As Alex grew older, he became more aggressive and when he turned 8 his mother, Elisa, put him on the drug Abilify. ““It saved our lives in terms of him being able to live with the family,” she says. But the drug had some potent side effects. Alex gained 45 pounds the first year he was on it. “At age 6 he was wearing a size 6 and by 9 ½ he was a size 12,” Elisa recalls. “He also became calmer, more relaxed and more sedentary and he didn’t know what to do with his new body. Since then, he’s definitely had a weight issue.”
While Alex likes fruits and vegetables, since being on the drug he has had trouble controlling his intake of carbohydrates, sometimes binging on things like french fries or packaged hot dog buns. “If he’s at a party and that stuff is available he will not stop eating it. He will take it off other people’s plates,” Elisa says.
Over time, Alex’s blood sugar rose dangerously high, to the point where he was considered pre-diabetic. With the help of an endocrinologist, Elisa was able to retool Alex’s diet to bring his blood sugar down, but the scare was enough to keep her vigilant about Alex’s eating habits, while also reducing the amount of Abilify he takes. “I can’t imagine my life with his challenges plus having to deal with insulin shots and monitoring his sugar,” she says. “It would just be a nightmare.”
Alex is now 5’3” and weighs about 135 lbs. He can run a mile with his Adapted Physical Education coach, plays soccer on weekends and he loves to swim. Still, he’s no longer the active runner and jumper he was before the medication. “It’s hard to get him to move whereas before it was hard to get him to sit still,” Elisa says. “He’s easier to live with but there’s been a cost to his health.”
Mason is a bubbly, outgoing four-year-old with Down syndrome who loves to play with balls, to swing and slide and swim. His mother, Anne, says he’s “all boy.” But because she is a registered dietician, she knows that even her active, playful son is at high risk for obesity. “With Down syndrome, overweight is more likely to hit at puberty but of course I’m doing my best to keep that from happening,” she explains. “There’s not that self-regulation of hunger and fullness that typical kids will have. With typical patients, I teach them to listen to how they feel – ‘Are you eating slow enough to realize your body is full?’ With Mason, I frequently have to cut him off – he would go back for seconds, or thirds. I have to do some kind of distraction technique to get him thinking of something else – ‘Let’s go play cards. Let’s go on the swings.’”
Lottie is a tiny four-year-old with many medical and developmental challenges, including spina bifida, hypothyroidism, and microcephalus. As a baby she was diagnosed with a failure to thrive and at 3, she was still taking a bottle and would only eat a very smooth pureed soup. After intensive therapy, she has learned to sit at a table with other children and will eat crackers, bread, yogurt and cereal. Yet despite her many food aversions, her Body Mass Index or BMI is now in the 95th percentile.
Judge is an 11-year-old with autism. At four, he had a variety of sensory issues and would only eat yellow foods. Today, after intensive feeding therapy, he eats a relatively balanced diet. But he still loves fast food and like many of us, he associates food with comfort – particularly fresh-baked cookies. His requests can be hard to resist.
“He does perseverate on food sometimes,” observes his mother, Barbara. “He loves cookies baked in the oven, the whole process of buying them, cooking them and eating them. He’s so happy the whole time, he’ll say, ‘I love you, I love you, I love you,’ so it’s very easy to get caught up in it and want to do it all the time. It just makes him so happy.”
Over time though, Barbara has learned that food requests can be an indication of anxiety rather than hunger. “When he’s nervous or anxious he’ll start asking for food,” she explains. “Your first instinct when your child is asking for food is to give it to him. But I can redirect him to an activity that makes him feel safe and secure. I’ll say, ‘Let’s go play chutes and ladders.’ We do something else that brings him the comfort that the food does.”
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Read other sections of Finding Balance:
- Overview: Obesity and Children with Special Needs
- Four Stories: Parents and Children Working Towards Healthy Weight
- Problem: High Incidence Among Children with Special Needs
- Impact: Consequences for Children’s Lives
- Risk Factors: Obstacles to Healthy Weight for Children with Special Needs
- Profiles: Obesity Profiles for Particular Special Needs Groups
- Solutions: The Five Spheres of Influence
- Programs: Examples of Anti Obesity Programs for Children with Special Needs
- Resources & Toolkits