Nicole Smith is the author of three children's books about food allergies, and founder of the food allergy information site AllergicChild.com. Recently I had the privilege to talk with her about how her involvement in food allergy advocacy.
In 1999, Nicole wrote Allie the Allergic Elephant for her son Morgan to take to preschool. She hoped that the story would help the other children in Morgan's class understand his food allergies. There was a story about the book in her local newspaper that was picked up by a regional news consortium, and suddenly she started getting calls from people asking if they could buy a copy for their children.
Nicole started AllergicChild as a way to market Allie, and as a way to share some of her hard-earned knowledge about managing food allergies with other parents.
Morgan is now 14, and I asked Nicole how living with food allergies has changed now that he is a teenager. "It got easier in middle school," she said, "because food is not such a big part of school anymore. In preschool there is so much food - parties, and things like count the M&Ms."
Nicole has encouraged Morgan to take an active role in managing his allergies. "We started young," said Nicole, "with him learning how to spell P-E-A-N-U-T on a food label." Now Morgan sits in on health care plan meetings with his school, and offers suggestions about what works and doesn't work on field trips and in the classroom.
Morgan's high school does not have a school nurse, and his backup autoinjector is kept in a locked closet. He decided on his own that he needed to carry two autoinjectors for safety. Nicole worked with the school so that every adult staff member is trained to administer an autoinjector - "even the custodians."
Morgan and Nicole recently returned from the Food Allergy and Anaphylaxis Network (FAAN) Teen Summit, where Nicole was invited to speak about helping your child self-advocate. Morgan spoke about the planning and preparation that went into his being able to participate in a 17-day cross-country tour with the Boy Scout Jamboree. "The highlight of the conference," said Nicole, "was just being with other kids and parents who 'get it.' They read labels, and they deal with the same stuff we deal with."