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R.O.C.K. (Raising Our Celiac Kids) is a free support group for parents, families, and friends of kids on the gluten-free diet for any reason: celiac disease, gluten intolerance, autism, ADD/ADHD, allergies, or personal preference. We concentrate on dealing with the unique challenges that families of wheat-free/gluten-free kids face, including:
• Finding "fun" gluten-free treats for kids
• Menu ideas for school lunches, quick dinners, and sports snacks
• Helping the kids to take responsibility for reading labels, cooking and planning/preparing food
• How to prepare for unexpected birthday parties and food-oriented activities at school, church, and elsewhere
• Halloween, Easter, and other special days - how do we include our kids safely?
• Educating day-care providers and teachers - without burdening them
• Dealing with grandparents, babysitters, and "helpful" friends who offer gluten-containing foods to our kids
• Ensuring our kids won't cheat, and what to do WHEN they do
• Sending kids away to camp, friends' houses, and other times when we're not around to help
• The psychological impact of growing up with celiac disease (peer pressure, teenage years, and more)
R.O.C.K. was founded by Danna Korn in 1991 after her son, Tyler, was diagnosed with celiac disease. It has grown to international proportions, helping families all over the world deal with the unique challenges of raising a child on a gluten-free diet. Danna explained why she started R.O.C.K.:
"Our story is no different from any other parents of a celiac child. By 18 months, our son was extremely ill, with severe diarrhea, lethargy, and a belly so distended that he could not bend over. Four different pediatricians told us not to worry; children get diarrhea, they said, and it is difficult to get rid of. They joked about our 'pregnant' little boy, and suggested we load him up on starchy foods such as pretzels, crackers, cookies, and breads. They all maintained that because he was in the 75th percentile in his weight category, that there was nothing to worry about. One physician patted my hand patronizingly, and said, 'It's okay. Most mommies get neurotic about diarrhea.' It was a nightmare."
When children are diagnosed with celiac disease at an early age, they usually have a severe intolerance to gluten, and are often extremely sick when ultimately diagnosed. Most parents share horror stories of visiting several doctors before finally arriving at a diagnosis, and are frustrated, exasperated, and angry, yet relieved to finally have a direction in which to turn.
A parent's emotions are overpowering at that moment: confusion, terror, relief, anger, sadness, and self-pity. These are perfectly normal reactions!
Sometimes it helps to talk about it, and it always helps to have some guidance when initially diving into the gluten-free diet. R.O.C.K. has free support groups in dozens of cities throughout the country. Parents exchange information and ideas, while kids enjoy gluten-free goodies and play with other gluten-free kids.
Danna has written a book called, Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children, published by Woodbine House, and a second book, Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living.
To contact R.O.C.K.: ROCK@celiackids.com or www.celiackids.com (Danna can be reached at danna@celiackids.com) -- or call (858) 395-5421. Local chapters, with contact information, are listed on www.celiackids.com.
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