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Food Allergy Parenting Errors - Mistakes are Part of the Journey!

7/17/2018

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PicturePhoto Credit: Weebly photos
Written By Guest Blogger: Lori Moussapour, MA, LMSW
(Originally posted on www.ToEmpowerU.com; republished with author permission)

Mistakes are Opportunities to Learn
We all learn from our errors. After reading somewhere that “mistakes are opportunities to learn,” I used the mantra repeatedly with my own kids, suffering for years the subsequent eye roll, hoping that I drilled patience, risk taking and resilience into them, with such overt and subliminal messaging. But could I walk that talk? Could I tolerate my own parenting errors with self-compassion? Parenting mistakes are the hardest to endure, because the work matters more than any other. And what happens when the mistakes involve exposing your child to her food allergen accidentally?

I need more than one hand to count the times I made critical errors, exposing my daughter to her allergens. Even though my errors stemmed from inadequate education, as opposed to irresponsibility, the guilt and fear I felt after each mistake was profound. Nonetheless, I started to realize that every error taught me invaluable lessons, ones that actually helped me in my efforts to keep her safe.

Hidden Ingredients and Age Appropriate Expression of an Allergic Reaction
My youngest was diagnosed as allergic to eggs somewhere around nine months. Within 6 to 8 months of that day, I served her a turkey sandwich with mayonnaise. Can you imagine my guilt and panic as she tried to place her entire fist into her mouth?  This mistake taught me the importance of identifying hidden allergens, and really reading labels. It also taught me about how preverbal infants and toddlers might express distress while undergoing an allergic reaction and led me to read up on the myriad ways that kids verbalize or indicate allergic distress.
​
Tether your Toddler!
A few months later, while traveling in Turkey, my husband and daughter went to a cafe for breakfast. Our little one toddled around the cafe interacting with a few other customers and the waiter, who found her particularly adorable, offered her a cookie. My husband, who feared an egg exposure, raced over and only arrived in time to scoop it out of her mouth. After a horrific reaction, that we later learned was anaphylaxis, we discovered that she also was severely allergic to hazelnut (and a host of other tree nuts.)  This error taught us the importance of navigating your child’s independence (and in some cases even her measured distance from you) in healthy cultural and age appropriate contexts. For us this meant that we would be by her side until she understood and could be relied upon to never take food from strangers. Because we travel so much, it also meant that when in a country whose staple flour is an allergen, whose citizenry adores babies and toddlers and whose loving fingers seek cheeks to pinch and mouths to feed, toddlers needed to be tethered!

Beauty Products Beware!
Once after a long day’s work out of state I enjoyed a one hour debrief with colleagues, having coffee and eating snacks (mixed nuts) at a picnic bench near our work site. So far from home I relished the freedom to indulge in a treat I rarely ate, as we are a tree nut free home. I made the drive home in under 3 hours, without stops, trying to get there in time for a good night’s kiss. When I got home, my daughter asked me to help apply her lotion, as her eczema was flaring up. Without thinking (or washing my hands), I lathered her up - the entirety of her legs. To my horror, hives and welts grew at an alarming rate across her tiny limbs, and we had another sleepless and stress filled evening. I learned that I had to either be allergen free myself, or practice unequivocal handwashing after eating them. Two years later, on a dry spring evening, I shared my lip balm with my daughter, a brand she had used many times over. Soon thereafter her lips turned red, and began to swell. She was reacting to residue of something I had eaten presumably the last time I used the lip balm. This error taught me about the importance of vetting and not sharing makeup, especially lip or eye products. I carry two lip balms now - one for her and one for me.

Knowing when to use epinephrine is as important as how to use it!
One mistake could have been grievous. Following an accidental exposure to pistachio, while visiting family for a holiday card/craft writing activity, my daughter experienced two symptoms of reaction- an impending sense of doom and an odd sensation of dryness and fullness in her throat. I undervalued her panic and counted only one symptom, the physical one. I reached my doctor, luckily, who told me that we had a known exposure (pulverized baklava likely resulted in cross-contact on the shared markers), and she had two symptoms. She needed epinephrine!!! I always knew how to use an epinephrine auto-injector, but this mistake taught me the importance of being skilled at first recognizing when to use it (anaphylaxis.)

Degree of blame and responsibility… are all accidents equal?
I tip my hat to those of you who ask, “are all accidents equal?” I suspect they aren’t.  The skeptics amongst you ask if trusting a waiter about a dessert’s ingredients is the same error as not bothering to read a label at all or not carrying epinephrine daily. While a small segment of our community may simply not treat food allergies with the seriousness it merits, research suggests that a large portion of accidental exposure nationwide results from barriers to needed financial and educational resources.  A study conducted by Dr. Julie Wang of the Jaffe Food Allergy Institute of Mount Sinai looked at parental behaviors and food allergy risks, and found that almost half of the parents surveyed reported at least one risky behavior, such as not reading food labels or not carrying epinephrine. The authors hypothesized that these behaviors were likely a results of knowledge gaps, misconceptions and financial burdens. More research needs to be done on where accidental exposures take place, under whose care, when and most importantly, why.

Your best teacher is your last mistake
​
But even with a clearer understanding of exemplary behaviors, based on ideal education, global access to resources and medication, and reduced financial barriers to healthcare,  parents are human! We will err, indeed with the best of intentions. Parenthood is the hardest job we ever have and yet there is no description or play book to help you through it. And those of us whose kids have food allergies live every day with added vigilance. The stakes are higher and so we must understand our allergens, read labels carefully, wash our hands when needed, not share food or skin products, and readily recognize and respond to allergic reactions. One famous quote, attributed to Ralph Nader, resonates strongly with me. “Your best teacher is your last mistake.”  I submit that when we err, we let enough guilt in to refocus on needed vigilance, but we offer ourselves enough compassion and care to embrace the teachers in our life, mistakes included! I know I have had my share!

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The Food Allergy Compassion Battle

7/12/2018

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Compassion: (noun)- Sympathetic pity and concern for the sufferings or misfortunes of others

Log onto Twitter or Facebook on any given day, and you'll see a compassion battle playing out in real time. So what is it? It's the battle between those that welcome compassion and those that refuse to offer compassion. 


​The latest food allergy compassion battle took place over the recent announcement that Southwest Airlines was going to stop serving peanuts on flights as of August 1st, 2018. Comments highlighted in this recent article from The Mighty, or the Southwest announcement mentioned above, illustrate this battle perfectly. When a company alters its policies to accommodate a subset of the population, such as those with food allergies, people do have a right to be upset. However, making comments that delegitimize food allergies or suggest that a snack is more valuable than a life only fuels the battle, taking it to levels that are detrimental to society in general. 

The truth is that these compassion battles will always exist. So what can food allergy parents do to navigate these battles without letting it negatively impact their mental health or derail their empowered attitude? 

Just Keep Scrolling
​When food allergy families read the comments at the end of articles about food allergies, our first instincts are typically to educate and raise awareness. Therefore, many parachute right into the battle field, responding to the insensitive comments with a mixture of anger and desire to evoke change. While these intentions are good, the environment is the wrong one in which to attempt this. Realistically, those that leave negative comments on these posts aren't people who are open-minded to change; they're typically there to express their frustration, which is centered on how it affects them. If your toddler was screaming or having a fit, you'd likely just sit back and let them wear themselves out. Why not do the same with these folks? If you're inclined to leave a comment, just leave it and run - avoid revisiting to see how the battle ends. Allergist, Dr. Dave Stukus said it best in a recent tweet: 

Don't do it!!!!
If that social media post or email has you fired up, don't reply immediately. It's ok to step away, simmer down, and think through your replies (and repercussions).

Or, better yet - just ignore the trolls. They feed off our emotional exchanges. #WednesdayWisdom pic.twitter.com/t8wWndLl0j

— Dr. Dave Stukus (@AllergyKidsDoc) July 11, 2018

​Be Proactive Versus Reactive
When you're feeling attacked, whether personally or as part of a community, it's likely to evoke intense feelings. Anger, frustration, sadness, just to name a few. Negative feelings are completely normal in situations like this, but we can counterbalance them by finding complementary feelings. Instead of anger, we can choose to feel proud (of this allergy community). Instead of frustration, we can choose to feel indifference (don't let it bother us). Instead of sadness, we can choose to feel motivated (to be an advocate). Let those reframed feelings guide you towards channeling your efforts to better outlets. Think about environments where your education and awareness efforts are welcomed rather than jeered. These online compassion battles aren't worth your time, feelings, or effort. Use your energy on tasks that encourage being proactive rather than reactive. 

Reconnect with the Positive 
It's easy to become overly focused on the particular compassion battle of the week. Instead, look at the big picture. Food Allergy awareness and education is more widespread than it has been in the past, even being shared via mainstream outlets. Many companies are choosing to accommodate food allergies better, even if some still have some work to do. There are a large number of support networks out there to help families adapt to living with food allergies. Treatment methods are being researched at such a quick pace, that at times, it's hard to keep track of them all. We are heading in a positive direction with food allergies, so keeping that in mind can help us steer clear of fighting these unnecessary compassion battles with an opposition that isn't interested in fighting kindly.

Lianne Mandelbaum, the powerhouse behind No Nut Traveler, illustrated these three principles well with this one tweet:

TY so much-#gratitude for my #foodallergy village :)
Par 4 the course since I began this #advocacy but not to worry I have skin as thick as an elephant now
I used to get upset but now I become inspired by them bec these are potential passengers on #airlines - why we need policies https://t.co/zKhzaBjtVE

— Lianne Mandelbaum (@NoNutTraveler) July 12, 2018

So, what helps you navigate these food allergy compassion battles?
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When Family Members Don't Follow Food Allergy Rules

7/10/2018

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PicturePhoto Credit: Weebly photos
It's hard when friends don't understand or follow your family's food allergy rules, but it's even harder (and more disappointing) when your own family members don't get it. Unfortunately, it's a frequent topic in food allergy social support groups, so it seems to be a common scenario.

Whether the rule-breakers are your in-laws or extended family members, navigating this scenario can be tricky.

​Here are a few suggestions to help you deal with these down-right frustrating dilemmas:  


  1. Be A United Front - Before either of you approaches the non-compliant family member, create a plan and confirm that you're on the same page. Discuss your family's food allergy rules that are being broken, what acceptable solutions you'll suggest, and confirm that you're both committed to following through with any negative outcomes that may result from the conversation (i.e. family member gets upset; visits need to be limited or stopped, etc). If you don't agree on those points, you should hold off on talking with the family member until you discuss things further and come to an agreement. Otherwise, you run the risk of the family member "splitting" you two on the topic (which would likely result in arguments).  

  2. Speaker of the House - So who should approach the rule-breaking family member? If it's one of your parents or in-laws that is the culprit, then ideally, it should be the spouse whose parent isn't following the guidelines who should address it. It’s perfectly fine to address the person together, but each of you likely know your parents best, so take the lead if it's your parent who is the offender. If it's an extended family member, such as an aunt or cousin, decide which approach feels best, which may depend on the relationship you have with that person. If it's decided that it may be best for you or your significant other to go it alone, agree to emphasize that you're absolutely in agreement on this topic. ​

  3. Prepare Facts & Solutions - Start the conversation off by reviewing your food allergy guidelines and why they're important. Share facts and examples of possible negative outcomes if such rules aren't followed. Then move on to potential solutions. As hard as it may be, try to remain as calm and focused as possible. If the conversation becomes too heated or arguing ensues, it may be best to pause and revisit it another time. If the family member isn't willing to comply with your family's food allergy rules, then it's highly unlikely that he/she would have potential solutions figured out. Therefore, it's up to you to have a list created. Here are some potential solutions to consider: 
  • If your house has a “no-outside food” policy, stay firm with that rule. Kindly inform them that if they bring any food over, they won’t be able to eat/share that item at your house, and you will need to send them home with it. If you allow outside foods, share a list of safe items/brands to choose from, as that will still given them some freedom with foods. 
  • If they want to bring homemade foods, you can alternatively encourage them to prepare the food item at your house (with approved ingredients and allergen-friendly edits to the recipe, of course). They may enjoy bringing their favorite recipes to prepare with your kids in your kitchen (bonus - no dishes cluttering their kitchen)!  
  • If they insist on bringing something when they visit, suggest that they bring a non-food item, such as beverages, an activity/game, or a project to work on - something non-food focused. Alternatively, you could suggest meeting at places where foods aren't needed or aren't the focus, such as parks, stores, or libraries.

* Holidays/Family Gatherings - When the food allergy rules are an issue during holidays/family gatherings, your approach may need to be different. If you're hosting, then you can apply the suggestions above - you make the rules at your house. However, if someone else is hosting, it's typically not cut-and-dry. Ideally, all family members would stick to the food allergy guidelines, even at other houses. But be prepared that may not be the case. If you've determined that you're not comfortable being around your allergens, which will be present at large gatherings, and you have to miss out due to safety concerns, then get creative. Maybe you could stop by after the meal is over, just in time for a family game? Or perhaps your house is nearby, so consider inviting family to stop by afterwards for a visit. If there are no solutions for seeing family on holidays, you'll likely need to consider other options to visit with family members at a later date and different location. (And yes, there will be hurt feelings associated with that outcome). 

The reality is that no matter how it’s handled, discussing this topic with non-compliant family members may cause ripples, as well as overwhelming feelings, which you'll need to work through. But ultimately, you have to do what’s best for your family. In doing so, not only are you putting your child's safety first, you're also modeling how to navigate tough scenarios, even if the outcome isn't ideal. (Comment below with what solutions have worked for your family in these situations. Your suggestions may help a fellow family with food allergies!)


Additional Articles Related to This Topic: 
  • How Healthy Couples Deal With Their In-Laws (PsychCentral.com)
  • 7 Strategies to Deal With Difficult Family Members (PsychologyToday.com)

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