Parenting a Child with Life-Threatening Allergies: My Very Best Piece of Advice

As the new year begins, I’ve been thinking about the best advice that I can give to parents who are wondering what they can do for their child to help keep them safe and reaction-free. After a lot of thought, this is it: Teach your kids to self-manage their allergies and be their own best advocates.

Please let me clarify: others need to know, too. Relatives, friends and schools MUST be educated on food allergy realities and risks. Young kids who can't advocate and/or understand must be protected.

However, as kids grow up and go out in the world, it's up to us to prepare them to live with their allergies. In the end, it all comes down to the individual: what they ingest, the choices they make and the understanding they have about allergies.

I've got a kid with severe, anaphylactic allergies attending high school next fall and I've been where many of you are now. Elementary school had its fair share of challenges and middle school, with its increasing independence gave us a few more, like our first overnight, several-hours-away field trip with the class. Oh, and her friends are all going out to eat on their own now, too. It's now my daughter's job to check out a restaurant, speak up there and if need be, avoid the place.

 The only reason I have ever felt comfortable with any of it is because I have worked with my daughter over the years, she's invested in her own health and I trust her to make the right decisions. Thank goodness, she is very strong and confident in avoiding what she needs to avoid and speaking up when she needs to speak up. Is it always fun or comfortable for her? No, of course not. But it's necessary and she knows this. Her attitude of taking charge of her allergies also means that she can do most things that she wants to do.

When she was young, I spoke up for her, paved the way and did everything I could to ensure a safe, healthy environment that was also emotionally healthy. I like to think that what I did helped her learn that its OK to take charge of allergies; in fact, not only OK but a vital part of our lives.

How do you get to this point? Prepare kids, but don't SCARE them. Not always easy, I know, but there are ways (see below). Your pediatrician or allergist is also a great resource here as they discuss (privately!) the ways you can teach your child, depending on their age and level of development.

Below are some strategies that I have found to be helpful when teaching kids self-management of allergies:

Teach your child to use their epinephrine auto-injectors. De-mystify those things as soon as you can and emphasize that if your child is in trouble, this device is their friend. Let them use the practice injectors as much as possible. My own child really likes the Auvi-Q with its voice instructions and shorter dosage time (5 seconds in the thigh as opposed to 10).

Take your child to the grocery store and read food labels together. Obviously take age and development into account but if you have a young reader or pre-reader, this is a great thing to do. To this day my daughter is a more effective label-reader than I am (but she's got young, sharp eyes, too. :))

Discuss cross-contact and why its difficult to know what is in a food prepared in someones home, or without a label.

Emphasize the "when in doubt, do without" rule. The golden rule of food allergies!  If you have questions about a food and you can't determine the answers, teach your child to just skip it. My favorite rule, ever. Just remind the kiddos, nobody wants to go to the hospital over a cookie or a piece of candy. If you're a really prepared parent, you've probably got a "safe" replacement with you, anyway.

Offer to have the kids work with you in the kitchen. Even little ones can do simple tasks like washing a vegetable or fruit. One of the unfortunate side-effects of food allergies is that some kids may become afraid of all food--and you definitely don't want that. Show them that there are still lots of good things to eat by having them help you cook.

Speak up in a restaurant with food allergy questions and let your child hear what you are asking and the answers you receive. If they are old enough, have them do the asking. It might be scary for kids at first, but once they get used to doing it, it really can increase their ability to dine out safely. Speaking up also teaches kids what types of establishments they may need to avoid.

Explain how to prevent allergic reactions using simple things like washing hands.

What it boils down to is incorporating food allergy management into your child's everyday life so that they come to learn that this is just the way they need to do things. Then, it becomes less of a big deal, it becomes part of your child's routine and once they are more independent, they will have to tools to navigate life more safely.

One note: If you ever think your child is getting overanxious about allergies and it's interfering with living their life or preventing them from doing things that could be done safely, then please read one of my blog's most popular posts featuring expert input from a therapist that treats kids with food allergies. 

Here is one of my most popular posts that deals with the topic of teaching kids to manage their peanut/tree nut allergy. Lots of good links in this one, too.

For more nut-allergy parenting help, check out my e-book, an Amazon bestseller on this topic, so thanks to all of you!

Valentine's Day!

It's coming up and yes, that means unsafe candy will be a factor. Still, if you are prepared, this is a fun holiday, even with food allergies. Check back to the blog soon about safe, nut-free Valentine's Day ideas. In the meantime, click this link for nut-free Valentine's Day candy ideas found at the supermarket, and this link for online nut-free Valentine's Day candy and sweet treats resources. If you're a Pinner, be sure to follow me on Pinterest: I've got a board for Nut-Free Valentine's Day with recipes and craft ideas.

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!