Teaching your child to care for his food allergies is like creating a stepping stone path. Parents and caregivers take a highly complex topic (food allergy care and independence); break it down into incremental steps to meet the child where he/she is – physically, mentally, emotionally and developmentally.
My life with food allergies began almost 11 years ago with the birth of my son. He was vomiting before we ever left the hospital from delivery and I was told that was due to a poorly developed digestive tract. Fast forward 11-months later, after struggling with reflux, transitioning to baby and table food, unexplained hives and eczema and labeled as borderline failure to thrive; we finally had a diagnosis of food allergies to milk, eggs, peanuts, tree nuts and sesame. I’ve learned a lot along the way, so I thought I would share some tips on how to steadily grow your child’s independence in an age appropriate way.
THE BEGINNINGS: Teaching Your Child to Care for His Food Allergies
Teach your child what he/she is allergic to using different methods.
Teaching your child to care for his food allergies means bringing it down to your child’s level. Place pictures, along with the words, of your child’s allergens onto a piece of paper and tape it to the back of the headrest in the car. This teaches a child in two ways (1) visually seeing the pictures and words and (2) verbally, by periodically asking, “What are you allergic to?” My son rattled off his list of allergens in no time. This is also a great tool for learning a home address and phone numbers. Google Images and Photobucket are great places to gather images.
A second way is to casually, and by casually I mean in a non-alarming way, introduce your child to his allergens while you’re at the grocery store. It’s important for him to see the allergen in the bag, e.g., these are peanuts. The jug on this shelf is cow’s milk. The cartons in this display case are eggs, etc.
Explain to your child why his food is sometimes different than what other people are eating.
It’s natural for your child to see certain foods and want to try them, even if they are unsafe. At a very young age, explain that certain foods are not good for him because it will make him sick, and then divert him to the large variety of foods that he can partake of. It’s important to focus on what one can have rather than what one cannot have, concentrating on the positive versus the negative. For example, instead of saying, “You cannot have that ice cream because you’re allergic to milk.” Say, “That ice cream does look delicious, but this soy ice cream is just as yummy and safe for you.”
At a young age, teach your child how to read labels because it’s confusing and takes some time to learn.
Reading labels is confusing for parents, let alone children. Show labels to a child early not only to instill the habit of looking, but learning the variety of names for an allergen, i.e., milk isn’t just milk, it’s casein, whey, etc. Your child will be able to help make educated decisions, along with your help, so that one day he will make well-informed decisions on his own.
In addition, it’s just as important to understand how to read manufacturing labels. Your child needs to know that anything “manufactured on shared equipment,” “in a facility that manufactures” their allergen or “may contain” labels are not safe food options. Moreover, just because a label does not disclose their manufacturing practices, doesn’t mean it’s safe, rather it requires a telephone call to the manufacturer to inquire about their manufacturing processes.
Parents, encourage your child to be secure and confident by surrounding himself with supportive and responsible friends.
From a very young age, I’ve always told my boys that it’s not about how many friends that you have, but it’s the quality of the friendships. We have noticed that our son seems to be attracted to kids that have less unpredictable behavior, less impulsive – he must feel safer with those kids.
THE MEDICAL STUFF: Teaching Your Child to Care for His Food Allergies
When age appropriate, be direct about what anaphylaxis is and describe what getting sick from a food might look like.
Teaching your child to care for his food allergies means delving into the medical side of your child’s disease. Use your child’s Anaphylaxis Action Plan to help speak with him about symptoms of anaphylaxis. Put scenarios together, and then ask, “What would you do if something like this happened?” Help your child to start thinking for himself…brainstorm ideas together. Consistently point to the Anaphylaxis Action Plan for answers on treatment and focus on the relationships of trust that are established with family, friends, school staff and other caregivers.
Allow your child to self-carry epinephrine when out and about with you.
When our son turned eight, during his second grade year, we had him periodically self-carry his medication pack when he was with us. This is a great way to create the habit of always remembering his medications. Be sure the bag is a convenient size, and consider purchasing an insulated pack to ensure the medication stays at a consistent temperature, this is our bag. Want a cross body pack with hands-free convenience? Stop by your local fabric store and purchase a strap that can be sewn on by yourself or a seamstress.
Review the Anaphylaxis Action Plan with your child monthly.
Once a month or every other month, whatever is best for you and your family, take the opportunity to review the Anaphylaxis Action Plan with your child so that he can become familiar with symptoms and the sequence of the events that will take place during an allergic reaction. Children love and thrive on routine, on knowing what to expect, and regular review of the Plan enables them to feel more calm, confident and understand the steps that will take place in the event of a reaction.
Have him use an EpiPen® trainer to practice administration, so that when he’s permitted to self administer, he is ready!
While your child may not be ready for the responsibility of self-carrying or self administering epinephrine, he will be someday. When you review the Anaphylaxis Action Plan regularly, it’s the perfect time to demonstrate the administration of the epinephrine auto-injector by using a trainer.
By educating your child early, you slowly but surely empower your child to care for himself, treat a reaction and continue to grow in self-advocacy.
THE SENSITIVE STUFF: Teaching Your Child to Care for His Food Allergies
Have the LT-word (life threatening) talk, whenever it seems appropriate. Trust me, you’ll know when it’s appropriate.
Teaching your child to care for his food allergies means sifting through the sensitive stuff. I never planned on telling my son that his allergies were life threatening until he started first grade and in school for a full day, kindergarten was only 2 1/2 hours. The plan changed, I told him the summer before he entered 1/2 day kindergarten because he started biting his nails — a real no no for someone with food allergies. Check out how we told him that his disease is life-threatening in this older entry entitled, “What You Can’t Afford To Be.”
Encourage your child to talk about how they feel about their food allergies.
We strive so much for our children to not feel different that sometimes we fail to remember…they are different. No matter how much we try to make their lives feel “normal,” they are going to feel different. Be sure to connect with your child often to create a strong and open communication line that allows your child to feel vulnerable enough to share his worries or concerns. You may not always be able to make things better for your child…but knowing that you’re there to listen might be all the comfort needed.
Create ways to showcase your child’s many talents because food allergies are only a sliver of who he is…food allergies do not define him.
Perhaps your child feels that food allergies define him. Regularly remind your child how they are so much more than the challenge they manage. Food allergies are just a sliver on the pie chart of who they are!
Idea #1 – Have your child describe his food allergies by using each letter in his first name and last name.
Idea #2 – Have him describe his talents and likes using each letter in his first and last name. These descriptions should have nothing to do with food allergies. Allow your child to keep these private, hang them on the wall in his bedroom, above his desk at home, wherever. Maybe make a pie chart that shows how he is so much more than his food allergy. Make sure that the food allergy slice of the pie is super small compared to all the other wonderful things that make up who your child is as a person. It’s a GREAT visual!
Give your child the gift of confidence by providing opportunities to talk about his food allergies with peers and adults.
When your child is young, it may be tempting to create consistently safe environments never allowing your child to be around his allergens or speak about his allergens. Offer opportunities for your child to speak confidently and positively about his allergies. It’s a gift to be able to say, “Yes, these are my allergies and it absolutely stinks, but it’s just the way it is,” and be able to move on. There is no shame to having a food allergy.
Share your child’s safe food with others to allow him to feel like their food is awesome too!
Unless you have an allergy, it’s difficult to surmise what it feels like to sit at a table once, twice or three times a day to different foods than everyone else – because you have to, not because you have different likes. Be sure to serve your allergic child’s favorite dishes often. He wants to hear the oohs and ahs of how delicious their favorite foods are as well.
Be sure to strike a balance between safety and living life.
Food allergies can feel all consuming. Perhaps you only feel relaxed when you’re at home or in the company of others that are well versed in food allergy safety. It’s a feeling that only another food allergic parent can really appreciate, always having to be “in spy mode” in surveying the land for food allergy potholes. The feeling of food allergies being all consuming can have a negative effect on your child so be sure to strike a balance between safety and living life. Consistently remind yourself to evaluate the actual risk versus the perceived risk. Be ready to acknowledge that the actual and the perceived risk may not always match up. Do not let over worrying consume you, your child and your family.
SCHOOL: Teaching Your Child to Care for His Food Allergies
Have your child participate in his 504 meeting. Perhaps he would like to do certain activities, the team can make it happen. This is the foundation for self-advocacy.
Teaching your child to care for his food allergies means discussing the administrative side to managing his disease. This past year my son sat in on his 504 meeting, he was in 4th grade. It’s important that a child know his accommodations. My son has always known his accommodations, so that when I periodically check in with him he could verify that the accommodations were happening. This year, he added value and promoted his self-confidence and advocacy by placing situations on the table that were challenging. For example, he is a quick reader that finishes library books within a day or two of checking them out. He wanted the ability to go down to the library and exchange his books without a medication pack-carrying chaperone, because a chaperone wasn’t always available.
We already had his allergist-approved addendum attached to his Anaphylaxis Action Plan, stating that he was permitted to self-carry upon his parents’ discretion. We decided that he was not only permitted to self-carry on days where he had student council, but also if he wanted to exchange his library books.
As you can see, self-advocacy builds with opportunities such as his voice/input during his 504 meeting and taking self-carrying to exchange his books in the library.
Be sure school accommodations aren’t overly restrictive. Let your child live without too bright of a spotlight on him. Be creative and provide a safe and inclusive environment full of many experiences.
There must always be a balance of risk and living life. Living life is never at the cost of making our child anxious with overprotective and unreasonable accommodations or isolation. It is our responsibility to ensure that our child is safe, happy and included. Our child’s food allergy calls us to think beyond a traditional accommodation and use creativity to make certain that safety and inclusion are combined in an accommodation.
Let’s say that your child is working on a science project with mealworms. The mealworms are developed on wheat germ that is processed on shared equipment with milk and soy. Milk is an allergen of your child. The wheat germ is included in the container with the mealworm. Your teacher decides that your child will wear gloves when observing and touching the mealworm. If your child is the only one wearing gloves, he will be asked, probably by multiple peers, “Why are you wearing gloves?” Your child may feel uncomfortable with being inundated repetitively with this question.
Since your child is entitled to a safe and least restrictive learning environment, a simple and creative solution will quiet questions and any discomfort. Ask the teacher to offer a box of gloves to the classroom. Then anyone in the class can wear gloves, instead of a Spotlight of DifferenceTM being placed on your child for his food allergies. By having the gloves offered to the entire class, your child’s focus can be on learning not on looking or feeling different.
Check in with your child often and ask if her 504 accommodations are happening, teaching awareness and self-advocacy.
It’s important that your child knows and understands his accommodations. Check in with your child frequently to be sure that the accommodations are being executed per your 504 or Food Allergy Management Plan. Ask open-ended questions about their day to gain insight into how the classroom operates. Also encourage your child to come to you, should he not feel safe or if accommodations are not happening consistently.
THE TOUGH STUFF: Teaching Your Child to Care for His Food Allergies
When age appropriate, discuss food allergy deaths with your child and find the teaching moments in the tragedy.
Teaching your child to care for his food allergies means talking about what you hope and pray NEVER happens. I do not speak about every food allergy death with my son, but I do when I feel there are monumental teaching moments.
Brian Kelly, a 22-year-old from Minnesota, ate a candy bar bearing the warning that they had been made in plants that also processed foods with peanuts. He ate this candy bar on more than one occasion and didn’t have a reaction. Then he ate the chocolate one last time, packaged with this type of warning label, and died. This tragedy created an opportunity to discuss ingredient and manufacturing label reading.
The second death that I was sure to share with my son was Chandler Swink. Swink had a level six nut allergy and, while at a friend’s house, he accidentally came into contact with peanut butter. He was found unconscious in the parking lot of St. Joseph Mercy Oakland in Pontiac around 12:30 a.m. Nov. 19 after he drove himself to the hospital. He had suffered anaphylactic shock, an asthma attack and cardiac arrest simultaneously. Chandler died seven days later after being in a coma, this just happened to be the day before Thanksgiving in 2014. This tragedy was an opportunity to discuss always following the Anaphylaxis Action Plan and how deviating from the Plan can have monumental consquences.
Sadly, a food allergy death results in a cascading number of errors leading up to it. It’s the slight chance that a person may take that can make all the difference. Riskier behaviors bring us to Monday morning quarterbacking and the realization of what could have been done differently. : (
Compassionately prepare your child that adults and peers will sometimes fail you or you may be disappointed by a situation.
We all want to believe that people are patient, understanding and compassionate, but even the best intentioned person can make a mistake or two, or be the reason the “Mean People Suck” bumpersticker was invented.
It is a realistic expectation that people will be kind, inclusive and thoughtful…but that doesn’t always happen. Sometimes our expectations miss reality, which can make us even more thankful for those that meet or exceed our expectations. Teach your child that disappointments are a natural occurrence in life, especially related to his food allergy. More importantly, disappointments can be teaching moments that open our eyes to the good things that we weren’t paying attention to before or took for granted.
To start, devise strategies for challenging scenarios with your child. A natural response when something doesn’t go the way we planned it is to become very frustrated, cry or yell, but perhaps there’s a better way to handle it. Speak with your child about the possible silver linings or alternatives to redirect your child’s thoughts.
And sometimes…try as we might…there may not be a silver lining or an alternative to consider. Sometimes crummy things happen and fairness isn’t always top of mind. Choosing acceptance, and moving on, may be the healthiest approach in putting a bad experience behind us.
ALWAYS ALWAYS ALWAYS: Teaching Your Child to Care for His Food Allergies
- Know that you are more than the food challenge that you manage. While this aspect of your life is enormous, it’s also only a small sliver of who you are as a person.
- Surround yourself with people who care about you, who know of your allergies and understand how to act in the event of a reaction.
- Follow your Anaphylaxis Action Plan.
- Carry two doses of epinephrine with you. It doesn’t matter if you are gone for just an hour, just a minute, just a second…it must always be with you. Even when you haven’t had a reaction in a very long time, don’t let over confidence creep in and cause you to drop your guard. The time that you won’t have your epinephrine, you’ll wish you had it.
NEVER NEVER NEVER: Teaching Your Child to Care for His Food Allergies
- Eat something that might have been manufactured on shared equipment or in a facility that manufactures an allergen.
- Go it alone. Never drive yourself to the emergency room. If you are alone, follow the protocol of administering your EpiPen, call 911 and administer your other medications.
- Be embarrassed about your food allergies. They do not define you.
Teaching your child to care for his food allergies isn’t simple but with ideas like these and the support of your family, friends and community it can feel maybe a little easier. I hope my 19 tips help you navigate teaching your child to care for his food allergies.
Do you have a tip to add and round out my 19 to 20? If so, please share a comment!
PLEASE SHARE THESE TIPS SO OTHERS CAN BENEFIT!!