Susan Weissman is the author of Feeding Eden: The Trials and Triumphs of a Food Allergy Family, a mother’s story of her son’s childhood food allergies and the life of her family. Susan was a middle-school English teacher before turning to writing full-time. She writes for The Huffington Post and Psychology Today, has contributed to Parent & Child, Allergic Living, and various sites on the topic of allergies and parenting. She was a PBS Parent Expert. Susan holds an M.Ed and is committed to strengthening the relationship between teachers and parents, and providing information to expand awareness around an issue that affects so many of us. Her son, Eden, is now almost 10 years old.
Susan, what made you decide to write Feeding Eden: The Trials and Triumphs of a Food Allergy Family?
Like so many other food allergy parents, I felt that with all we had gone through, there had to be a way to make some sense out of what was happening, and maybe help others. After I started, and I began to achieve some rhythm with the project, I raised my sights a bit. I decided I wanted food allergies families to know that they were not alone. And I wanted families, teachers, grandparents, even doctors and nurses, to understand what the food allergy life feels like for us.
What I wasn’t quite prepared for after Feeding Eden was published was that so many parents would reach out to tell me that they felt like they were reading the story of their allergic family and their parenting experiences.
For parents reading this interview, what hope or suggestions can you give those newly diagnosed or still struggling to get an accurate diagnosis?
I’d say that parents should have hope and optimism as they help their children navigate their allergic condition but they must have the right doctor and accurate diagnosis. The first step: make sure parents and their doctors are communicating clearly about tests results and what I call “food history.” This is the key to defining an allergic child’s medical needs. In the first chapter of my book, titled Searching For a Savior, I describe how I bounced between specialists like a ping-pong ball, waiting for one of them to “save” Eden from his symptoms. The problem was that I needed to find an allergist whose treatment I could both understand and implement.
You mention in your book attending a support group meeting. Do you still participate in one? What value do you find for parents managing food allergies in attending support groups?
I do still participate because there is always something to learn and share. The great thing about a food allergy support group is that even if you don’t feel like sharing your personal concerns or questions (for example – how your mother-in-law just “doesn’t get it” or how hard it is to convince your teenager to wear their medical ID bracelet) simply listening to the other parents’ stories helps everyone. Time and again, I’ve been in an unfamiliar situation with Eden, and I’ll think back to other parents’ suggestions. It’s a great way to learn about resources in your community, vent frustrations in a safe environment and learn about the latest food allergy research and treatment progress. And it’s a way to “give back” even to people who don’t read the book.
Do you have plans for an additional book?
Right now, my focus is on bringing Feeding Eden into schools and family communities all around the country.
Do you have a blog (or somewhere else on the Internet that you write?)
Yes. I write at www.susanweissman.com On my site, I have a blog where I post on topics of interest to all parents, including allergy friendly recipes and food ideas. I also contribute to The Huffington Post, Psychology Today and a site called Asthma Allergies Children, among others.
Eden, thank you for being willing to answer some questions for our readers.
Are you old enough now to carry your EpiPen at school? What about on the weekends or when you and your family go out – who carries your EpiPen?
No, I don’t carry my EpiPen at school. I have two emergency kits, one is with the teachers and the other one is with the nurse. On the weekends my parents carry it. Or whoever I’m with.
I have a lot of readers who have preschool age children with food allergies. What can you suggest for these kids with food allergies when someone offers them food to eat?
I don’t think I’ve been offered food I’m allergic to at school, even pre-school, really since everybody knows I’m allergic before the school year starts. Once in a after school class a PE teacher told everyone they could have a cookie that I knew wasn’t safe so I just didn’t take one. But if they can maybe they should say, “I have food allergies. Do you know what is in the food?” That’s what I say to anyone who offers me food and I’m not sure. Then I read the label too.
Eden, when you go out Trick-or-Treating for Halloween, how do you manage your food allergies?
I go out Trick-Or-Treating I try to take safe stuff, but there usually isn’t a lot.
Does your family have any “rules” about the candy that’s brought into your home later?
If something isn’t safe in my bag I give it to my sister and my dad. I don’t really care about the candy. It’s gets annoying that I don’t have as much to eat but I just like the fun of trick or treating.
Do you know what you’re going to dress up as this Halloween?
A Dark Sorcerer
Thank you Susan and Eden!