Monday, June 4, 2012
Explaining Food Allergy Needs to Others: What Do You Say?
How do you explain food allergy management and rules without scaring people away, or worse, misleading them into a false sense of security? What do you tell them? How much detail is enough?
This question is one of the most common ones faced by parents of food-allergic kids, simply because we often find ourselves in a bind. If you share too few details and important points, your kids can be in danger. However, if you go overboard in your explanations, you can risk losing someone's understanding, goodwill and ultimately, ability to care for your child because they are too overwhelmed to get the gist of what needs to be done.
It's also important to note that who you are dealing with makes a difference in how you go about teaching someone. For example, you are obviously going to have to explain things in great detail to your child's school staff and teachers, complete with medical documentation and other forms. However, there will be situations when others won't be invested and neither will you. So how do you make your explanation short, to the point and most of all, effective?
It will vary for each person and situation, and each person you meet and experience you have is going to shape how you go about this important education process. I firmly believe that teaching others is important, but the approach really makes the difference in how your point gets across. I also believe that while advocacy can and should happen each day, always putting yourself in a position of "guest lecturer" with everyone you meet is a stressful position to be in. And it probably won't help as much as you think. There are ways of advocating that make it easier on you, too.
One really important thing to remember is that usually (and I know this isn't always true, but bear with me) people who misunderstand food allergies are usually misinformed and not intentionally clueless or malicious. Once you deal with life-threatening food allergies for awhile you'll be saying to yourself, "How can they NOT know?" Once food allergies and the lifestyle changes that accompany it hit you, you will forget that you ever walked around not understanding allergies yourself.
I was recently reminded of this when one of my younger daughter's friends was diagnosed with celiac disease. Suddenly, I'm asking a whole bunch of questions and feeling uncertain of what foods are OK even though I have a basic understanding of the problem. It gave me even more compassion for those who are completely new to life-threatening food allergies.
I address this situation in great detail in my e-book, The New Nut-Free Mom, (available on Amazon and for your computer) but I wanted to share a few other guidelines that have worked for me:
1. Don't apologize. Many times parents feel ashamed that they even have to bring up food allergies with another parent, family member or even acquaintance. When you feel this way (and we all do at some point) take a step back and breathe. Apologizing is appropriate when you've done something wrong. And you haven't--you simply have some special needs to discuss. If you keep this in mind, you can be much calmer, easy to understand and ultimately, more effective as a communicator. Of course, you should always profusely thank anyone who accommodates you but don't keep apologizing. If people truly like your company and want to spend time with your family, they will do what they can to help.
2. Adopt an upbeat tone and be proactive. It sounds so easy, but believe me, if you stay upbeat you have a much better chance of getting your message across. Simply saying something like: "Hey, thanks for inviting us to your party! We are very excited to attend. I just need to ask about the menu. My son has severe peanut allergies, so we're happy to bring our own food. We just wanted to know if there are any things we have to watch out for." There. Right away, you've taken the pressure off of the other person and opened the door to communication. In these cases, once I explain our situation, some people have even removed items from the menu. But if you don't communicate about allergies in advance and stay proactive, sometimes people feel guilty for having the allergen around the house and even resentful that you've put them in an uncomfortable position. That's not good from both your standpoint and theirs, as party hosts. Usually hosts want guests to feel comfortable so ask questions, make your concerns known in an friendly way and everybody wins. Or, at the very least, you know what you are dealing with.
3. Base your explanation on the person you are speaking with. For example, you will probably want to share every last medical detail of a recent allergic reaction with your child's grandparents because they are deeply invested in your child's health and because they are family members. However, if you're talking to an acquaintance about the neighborhood block party, for example, they probably don't want to hear all of that. So a simple: "My child is highly allergic to nuts and has experienced severe allergic reactions. Can we skip the peanut bags this year at the block party--all that dust and stuff blowing around can be hazardous to her health," will probably suffice.
4. Keep it simple. I touched on this above, but if you veer off into the latest medical news on food allergies or have someone suck you into topics that aren't relevant to the matter at hand, i.e. keeping an allergic person reaction-free, then you risk losing your message. They say it in politics all the time: keep your message simple and stay on message. It doesn't matter what the latest food allergy news is if all you're talking about is how to keep your child out of harm's way. I'm not saying to blow off someone who is just trying to make conversation, but if they want to get into a deep discussion about how your child got allergies, what you fed them as a baby, etc. you are going to get sidetracked. Try to shift them back to the matters at hand, e.g. "Can you make sure my little guy washes his hands before snack time after playing with shared toys? Thanks so much."
5. Stay firm but friendly when problems arise. Some of you may have experienced the following: "I communicated my socks off in an appropriate way with my hosts, they told me not to worry, they had it covered and they STILL had bowls of peanuts all over the house. What do I say now?" Sadly, this does happen. Maybe it's happened to you. I'm sorry. It's happened to me. What do you do? Well, in this case, you are going to have to keep calm but be firm. Say "Hi there--I know we talked on the phone and you said you wouldn't serve peanuts. My little girl is too allergic to be around so many so would you mind removing them?" If they say no, you can choose to leave but don't be tempted to get into a blowout argument at that time. If this is a close friend or family member, better to call them a few days later and talk it out.
Communicating effectively with others is always a challenge in our fast-paced, phone-texting, e-mailing society. Communicating effectively with others about food allergies is even more challenging--because health and life are at stake.What has worked for you?
LIVE CHAT REMINDER: I am co-hosting a live chat on The Motherhood with Lori Sandler of Divvies, a psychologist and a bevy of fabulous bloggers. Our topic is managing food allergy anxiety--always a good topic. Join us tomorrow, June 5, at 1 pm EST and register for the chat now by following this link. Hope to see you there!