Monday, June 4, 2012

Explaining Food Allergy Needs to Others: What Do You Say?

We've all been there: our kids are invited to a party, play date or event. Sometimes you will attend with your child, sometimes you won't (especially as they get older). But the bottom line is that we are frequently called upon to explain severe food allergies to a person (or people) not familiar with our situation.

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!


Jessica said...

I really enjoyed reading this post today. Now that we are in kindergarten we are being invited to more parties where I don't know the parents as well as the parents from preschool and old friends. I try to be the upbeat positive like you suggest and many moms have asked where I get my cakes and they will use the same baker but if not I always say we have our own cupcakes and it's not a big deal. Also at the last party we were at one of my daughter's classmates who shares the peanut allergy forgot to bring his own cupcakes, it's a good thing I carry 4 with me when we attend parties. But I also wanted to say thank you for reminding me not to apologize. It does seem like the first thing I do. We did attend a party last month where I thought I had said something to the parent (also they only invited the class and the class is a nut free environment so silly me assumed they would know better then to have peanutbutter cups all over the party room) When the party child offered my daughter one I said no thank you, the father over heard me and decided to eat all the pb cups right then and there instead of leaving them in the wrappers. I love being able to share these oye moments so thank you for your blog.

Lisa P. said...

Thank you for the information. Do you think that people are obligated to change their eating habits to accommodate your child. Ceor example, changing a party venue thatvis not allergy friendly or serving cupcakes from a nut free bakery, serving only allergy free foods, etc. I am interested in your opinion. Thanks.

Jenny said...

Whenever possible I believe in excluding food instead of people.If we all are willing to work together this can happen with give and take on both sides.

Lisa P said...

In theory I agree, but if it is my chikd's birthday party and they have asked it to be in a specific place, do you think it is their obligation to change that. Does every event, whether it be a chikd's birthday, a graduation party, wedding shower, etc revolve around the FA person's needs and not the guest of honor?

Jenny said...

Hi Lisa P.--It sounds from your comment as if you are hosting a party--this is not a hypothetical question. First of all, of course no one is "obligated" to change a venue or food. This is a complex issue that depends on a lot of factors. For example, most of us don't expect casual acquaintances to change things for us--but we might expect more from close friends or family. And that's only because those people and their events mean something to us--not that we want to take away from the guest of honor or have the event "revolve" around us and our kids. Do you think you can have a talk with the parent of the child with food allergies? I don't know how close your child is to the child with allergies, but see what the birthday boy or girl thinks about including the other child. For example, if they are good friends, it could be an issue. If you already have had this talk with the other parent and decided that a venue change is not what the birthday child (or you) would like, be honest. I appreciate it when someone lets me know so that I can make an informed decision. One thing that is really important to understand/appreciate is that kids with allergies want to be included. As parents, we know that is not always possible but you can't fault us for trying to see if something can be worked out. None of think the world "revolves" around us or our kids--we just try to do the best we can.

LisaP said...

Thank you for your suggestions. I understand that no one chooses to have life threatening food allergies. At the same time no one chooses to have autism, mental illness, ADHD or many other conditions that affect people's lives on a daily basis. I hope this doesn't sound harsh, but I do not want to take on the responsibility of changing every food item at my son's party for the sake of one child. It is too much responsibility and not fair to the birthday child. I do not see FA parents rallying to include children with other special needs or teaching compassion for all children. While it may not be intended that way, it seems to be a very one-sided compassion, "do unto MY child."

Jenny said...

Lisa, it seems as if you have a very specific situation you are dealing with and I wonder if it is a family member who is wishing you had a different venue/menu for your party. Many times family members clash over allergies. Your comments made me wonder if this is the case with you because I asked several food allergy parents if they have ever attempted to alter a menu or change a venue and they said never for a classmate, but they would bring it up with close family like a sister or a sister in law. If this is not the case, then be assured that most families of food allergic kids would never assume that someone alter the party of a casual acquaintance or classmate. We are very proactive as a group in adapting to our situation and many of us will choose to keep our child at home if we don't feel something is safe. As far as parents of kids with food allergies not having compassion for children with special needs, that is a very unfair accusation to make to an entire group of people. You have this belief and so it is OK for you to take a hard line about a child with allergies, is what I'm getting from your response. Regarding special needs, I know many parents of kids with food allergies who are compassionate to others with all types of needs and situations. In my case, your statement that we don't care about kids with special needs couldn't be farther from the truth. My husband is the CEO of an organization devoted to adults and children with physical and developmental disabilities. Our family spends a lot of time promoting and supporting people with things like autism, Down syndrome and other issues. We are also affected personally by some of these things in our extended family. My children have always reached out to kids in their class with special needs--I can't take full credit because my daughters are inherently nice kids--but I do think it's because they have been taught these values at home. I am sorry for whatever your experiences have been that have caused you to have anger towards those who struggle everyday with life-threatening food allergies. It is a very difficult way to live and it can be as socially isolating as other types of medical and physical conditions. However, we all do our best. I hope the next food-allergic kid (or their parent) who crosses your path will not have your contempt, but your compassion. Thank you for discussing this issue as you have done, and I hope I've helped you to at least consider the other side.

Anonymous said...

I have a peanut and tree nut allergic daughter. I have never asked anyone to change a venue or food menu for her. I expect that I will always bring my own desserts or other food. The party is important milestone for a child. It's a very social and fun day. However, they can have a great party without nuts.

Why are you assuming the FA parents are unsympathetic to others with special needs? One has nothing to do with the other. My daughter (with food allergies) has been in the psd class with children of different disabilities and diagnosises. The school is nut free and all the children had no problem getting along with each other.

I can't believe anyone asked you to serve cupcakes from a nut free bakery. First of all, there are very few of them out there. For myself and other FA parents, I will always provide the necessary food for my child. Would not expect anyone to take on this responsibility.
If you child is or will be school age in the future. You most likely will encounter some type of food restrictions in the classroom.

The kids in my daughter's school are very understanding. When there is an event, they have come up to me and showed me the food they brought and asked if it was safe for her. Kids of this generation are probably learning more about tolerance than their parents generation.

Anonymous said...

Ran into your blog by accident but am very glad to read your posts. I've had severe nut allergies all my life, but when I was a kid, there just wasn't the publicity about them (and in fact for much of my childhood, my mom didn't really believe I was allergic!). I'm now a young adult and have survived my childhood with nut allergies (so there's hope!). Now I proactively let friends know about my allergy and the severity of it (i.e. it's not just a situation where I feel unpleasant for an hour or two). I've found that proactively mentioning it (even when there's not a situation of going over to someone's house for dinner or whatnot) helps people to remember.

Personally, I've never specifically asked someone to change the menu for me, although usually my friends are good about making sure that the majority of the food is nut-free. I do, however, make sure to ask the host or cook before I eat. If in doubt, I just politely decline and get something to eat later.