Special needs and allergies are a balancing act for Chicago families
Monday, February 14, 2011
Parents of kids with special developmental and physical needs are all too familiar with the many challenges they face as they navigate life each day. But what if your child with special needs also has food allergies or intolerances?
Severe food allergies can be life-threatening, bringing an added risk to a child who already copes with other physical or developmental issues. Alison Bell, a Westchester mom of two, has had to find her own ways to cope. Her outgoing 5-year-old son, Kamren, has Down syndrome, as well as a severe peanut allergy.
"We call Kamren 'Curious George,'" Bell says. "He loves to explore."
However, Bell worries about her son's limited ability to speak up about his allergy. "He can't say to people: 'I'm allergic to peanuts.' He doesn't have those words yet," she says.
Looking for ways to help her son stay safe as he ventures out into new situations, Bell scoured the Internet until she found a comfortable medical I.D. bracelet her son can't remove. Food allergy information is always on Kamren's wrist, so he doesn't have to rely solely on verbal communication with those who may not know him well, such as a new caregiver.
Alerting others to food allergies is only part of the equation. Ruth Smith, founder and editor of the online resource "Best Allergy Sites," www.bestallergysites.com, has a 7-year-old son, J, with Asperger's syndrome, a condition marked by difficulty with social interaction. J also has peanut, tree nut, egg and sesame allergies.
"My son often felt left out during classroom birthday celebrations and other activities that involve food," Smith says. Teachers seated J at an isolated table to keep him away from unsafe foods. While this practice is commonly used for allergic kids, segregated seating caused Smith's son to feel even more distant from his classmates. Ultimately, Smith pushed for a policy that limits food in the classroom instead of isolating allergic kids. "J has benefited both socially and academically," she reports.
Food allergies may even clash with some therapies used for kids with certain developmental challenges. "We use food to help with sensory issues," says Kathy Ruffulo, vice president of Children's Services for Aspire, a Chicago-area nonprofit devoted to people with disabilities. "Plus, as a social tool, it's great to sit with a snack and have kids use their language skills."
Aspire has a peanut-free children's facility and asks parents if any food allergies or intolerances are present when enrolling kids in therapy groups.
Food intolerances, such as celiac disease, also pose challenges to kids like 6-year-old Ben Prine. A spunky kindergartner, Ben is on the autism spectrum and also has developmental disabilities. He was placed on a wheat-free, soy-free and casein-free diet by his doctor after it was discovered he suffered both physical and behavioral symptoms from certain foods.
"Changing Ben's diet was a big deal," says his mom, Barb Prine, an Elmhurst mother of two. "He wasn't diagnosed until he was 5, so it was hard for him to give up so many foods. It was a total lifestyle change." Barb and her husband, Doug, involve Ben in cooking and grocery shopping as a way to help him accept and enjoy his new eating regimen. They even found a gluten-free play dough recipe.
Life with food allergies and intolerances can be tough, and adding other special needs to the mix complicates things even further. However, with a parent's love and a little creativity, kids can thrive. "Ben loves to help bake banana bread, cookies and things that all kids enjoy," says Barb Prine. "We just find ways to make them free of the things he can't have."