As the parent of a child with an intellectual disability, I know how difficult it is to help my daughter make healthy food choices. As a nurse, I know that we will not be able to solve this nation’s obesity crisis if we fail to include the millions of families like mine who are caring for a child with special needs or a disability.
Even though my daughter Lauren, 21, now has a successful acting career on Glee and works hard to control her diet, she has struggled with weight for much of her life.
She’s not alone. Among teens with Down syndrome, the obesity rate is 86%, according to a landmark study released this week by AbilityPath.org, an online community for parents and professionals serving the needs of adults and children with disabilities. “Finding Balance: Obesity and Children with Special Needs,” is the first study to focus exclusively on a population that is deeply affected, yet largely excluded from the national conversation about obesity. And it’s long overdue.
For our children, the relationship to food is far more complex than for typically developing children. There are food aversions and cravings to contend with, the side effects of medication and mobility limitations. There are far fewer outlets for sports and recreation.
There is also the social isolation that comes with being different and excluded from the team. There are the limitations imposed by well-meaning but unknowing teachers and coaches, who see our children’s disabilities, but often miss their special gifts that make them valuable teammates and playmates.
As Lauren was growing up, I faced many of these challenges alone. And it wasn’t easy – for either of us. It still isn’t. There are frustrations, setbacks and temptations. There is a fine line between making healthy choices for your child and allowing her independence as she grows older.
For us, finding the right balance is a family issue that starts in the home and quickly touches schools, childcare centers, recreational and sports organizations and many other people in your child’s life. Thanks to “Finding Balance”, there is now hope and help available for millions of families like mine.
Here are a few tips from a mom who has been on the front lines:
Teach Your Child What to Expect: When Lauren and I go to a restaurant, we’ll talk beforehand about the choices likely to be on the menu and plan how to handle them. The same thing goes for the huge buffet on the set of “Glee.” We try to avoid excess and to make healthy choices. Lauren will now on her own ask for a to-go box and place half of her order in it to take home.
Find Incentives Other Than Food to Modify Behavior: For families whose child has behavioral issues, it’s so easy to promise a treat to reward desired behavior or to curb a tantrum. Instead of having everything focused around food, say “Let’s take some time together, let’s take a walk or watch a special TV. show.” Refocus and come up with things that are equally attractive.
Praise Success and Forgive Failure: Praise is so much better than feeling guilty. Rather than stressing regret over a bad food choice, ask “What can you do next time?” Instead of thinking your whole day, or week or life is ruined by one lapse, say “For right now, its fine. Let’s go out and take a walk or work out. We’ll make a better food choice next time.”
Promote Inclusive Sports and Recreation: When Lauren was little, her dance teacher called and said she wanted to offer a special dance class for children with disabilities. I said, “Great, but why not include Lauren in your regular class?” Children with special needs strive to be part of a group and crave the companionship that comes with it. To this day, dancing is Lauren’s favorite activity. When you help your child find an activity she or he is passionate about, exercising becomes easy instead of being a chore.
Educate Others: As the parent of a child with special needs, you are constantly advocating and educating doctors and even teachers about what your child is capable of. Sometimes it’s taking the risk that your child will be hurt. Ask yourself, is that the worst thing? Or is sitting alone in their room worse? Be creative and think outside the box.