Finding Balance: Obesity and Children with Special Needs

Leo is a chubby boy. There's no pussy-footing around that. Whereas his pediatrician once had a "let's wait and see" attitude towards Leo's health and girth, she has started to remind us that now is the time to instill life-long healthy habits in our boy, if we can -- understanding of course that Leo's autism comes with food issues, and that the appetite-whetting medication he takes to help him control aggression is a complicating factor. And I know that Leo is not alone in needing to find strategies to be a healthier kid.

So it was with great interest that I joined yesterday's conference call with Ability Path, Special Olympics, and Best Buddies on their just-released report: Finding Balance: Obesity and Children with Special Needs [PDF]. I was relieved to discover that the participants mostly focused on practical, healthy support and strategies for families and individuals with special needs, rather than stigmatizing obesity itself.

The following are my notes from the conference call, any errors or omissions are also mine.

AbilityPath.org launches national campaign to raise awareness, end obesity epidemic, publishes guide for parents and caregivers in coalition with Special Olympics and Best Buddies International

Ability Path's Gabrielle Karampelis moderated the call, and stated that the report is meant to ignite conversation.

Sheryl Young, CEO of AbilityPath:

Children with special needs and disabilities have been left out of the national conversation about the obesity epidemic. We need to include them -- and we need to talk about the role that family members play, or physicians treating and advising family, or the school responsible for physical education and inclusive programs, or city council members approving inclusive equipment at playgrounds or at the park. They all need to be part of this conversation, for the following reasons:

1. Thirteen percent of American families have a child with special needs or disabilities.
2. It's really impossible to overstate the extent of the problem, we don't have enough information -- but in general this population is 38% more likely to be obese, and in some specific populations the numbers are more critical -- in the Down syndrome population the rate is 86%.

The issue is seriously complex, but we're hoping to education the general public about this -- and also convey a sense of hope. We want to raise awareness and have a call to action.

Tim Shriver, Chairman, Special Olympics:

For us, this report is bad news. We have over 3 million participants in community and fitness programs. We all deserve a failing grade in the ways in which we've created communities of health, fitness, and inclusion. I think the crisis is seen most closely in social aspects, but also in health aspects and discomfort aspects. There is a sense of apathy about creating a difference, and with our community commitments.

The Special Olympics is committed to redoubling their efforts, and accepting that this report is an indictment of our efforts. We need to include kids, need to "play unified" so everyone get the chance to be healthy, learn sports and nutrition. Our coaches will be trained in year-round fitness and nutrition, not just shooting baskets and running the 100 yard dash.

This is beyond a warning. This is a statement of serious problems. Our commitment:

• First and foremost to expand our work
• Second that when kids join Special Olympics, kids become not just more fit, but committed to health and fitness and nutrition
• Third that kids get to be in inclusive fitness environments

Robin Sinkhorn, Lauren Potter's mom (Lauren plays Becky Jackson on Glee, and is now 21):

I'm so glad to be part of the release of this report, Lauren has struggled with this issue daily for her whole life, and I have supported her.

The report is full of real and practical solutions that we can really use to help our kids. It's so important that when people talk about obesity issues, they include our kids. (Robin wants to help any advice she can as we move forward.)

With Lauren as with many other kids with special needs, the relationship with food is always more complex than with typical peers -- especially in terms of balancing healthy choices and independent food choices. Now that Lauren is a young adult, any suggestion can be seen as treating her like a child. This is especially hard now that Lauren spends so much time on the Glee set with overabundant food choices.

70% of young adults feel parents are intruding when they offer solutions. But Robin thinks this report offers hope and health. When she read the report, she felt like it was the story of her and Lauren's life.

Questions from callers

Shannon Rosa, Thinking Person's Guide to Autism: When our kids are on medications that increase their appetites or lead to sedation, how can we balance those side effects with their health?

Cheryl: The question has come up the most: When we announced the report, we had streams of comments on our Facebook page (www.facebook.com/abilitypath) about this issue.
When the meds work, and you need them to work, then talk with physicians, hopefuly they'll have better info, and will be able to suggest other things you can do. You'll probably have to make lifestyle changes, like walking every day. Every family has to look at what works for them, and get more success stories that we can share.

Tim Shriver: We have a generation of medical professionals that are really seeing kids with special needs into adulthood, they are treating major conditions and seeing nutrition and healthy lifestyle as a lesser priority. In the meantime, the advocacy lies with parents and self-advocates themselves to challenge  their physicians to help them understand how medications can contribute to unhealthy lifestyles. We need to come up with new models that prioritize healthy lifestyles.

Gabrielle: This report is meant to spark conversations, encourage families to put health at the forefront of their medical concerns:

Reporter for La Opinion: Does economic status contribute to the likelihood of negative health outcomes?

Tim Shriver: Resounding yes. Poverty contributes to negative health outcomes, and special needs can contribute to poverty. People living in poverty are more likely to be obese, and have significant health problems -- and find it difficult to get health care. This is true not just in the United States but in developing countries all over the world -- Latin America, Africa, Asia. This is a situation where poverty contributes to injustice -- when injustice is defined as "unfair treatment."

La Opinion: Why do special needs contribute to being overweight?

Robin Sinkhorn: That speaks to the complexity of this issues -- you're dealing with kids across the special needs spectrum, regardless of income -- they're not as active, they might have food issues, food aversions, food cravings because of medication.

Liz Doughty, San Bernadino: I have a 26 year old granddaughter with seizures -- she gets very upset when she feels caregivers are impinging on her independence, but she doesn't always make the right decision. What advice do you have?

Robin: It's very important to set up your child's expectations, and let them be the person to make the healthy choices. Lauren just got an iPhone app that can help her track calorie counts. That might backfire in terms of being overly concerned about calorie counts for some people, but it's one little thing that has worked for us.

Cheryl: It also helps to hear from doctors that health will impact lifestyle, as opposed to hearing it from parents or caregivers.

One of our clients has incorporated walking into her daily routine whenever she can, has lost 20 lbs and has a goal to lose another 20. She also now fixes her own lunch at home. At AbilityPath.org, we are compiling a list of websites and apps to help people track their own meals and health, and create menu plans and goals. They are also starting up peer support groups so folks can help support each other. It's promising.

Laura Cork, from parenting blog LAStory: What are some solutions to help other kids understand that our kids can be strong, and how to include them?

Cheryl: The Special Olympics and Best Buddies just partnered up with Nickelodeon's "How I Play," national day of play -- a great success. Steve Wampler, who has cerebral palsy, recently climbed El Capitan, and does inclusive camps -- he's really dedicated to showing how our kids can exceed expectations.

Tim: Exercise, sports, and play is what our kids like! They enjoy setting up games and playing sports, swimming. The best way to promote a healthy lifestyle is to make it motivating and fun! Include incentives that are enjoyable. Let's get kids playing together!

We organize unified sports -- but we also see self-organzing happening in middle school, high school, assemblies, outings, campaigns -- so why not with sports and play? Let's make it easy and important rather than peripheral! It shouldn't be marginalized, completely overshadowed by medication or homework. It is critical to expand accessible and inclusive sports and play for people with speical needs of ALL ages.

Leo playing on his soccer team