Letting Go: Teaching An Allergic Child Responsibility

“The day we learned our son had a life-threatening food allergy, our doctor gave us a piece of advice I will never forget. He said, ‘As a parent, your instincts will be to control your son’s environment to keep him safe. But instead, use your energy to teach him how to take care of himself, because what you can’t see right now, while he is four, is that someday it will be impossible to control his environment, and then he will be left incapable of taking care of himself. You will be panic-stricken every time he is out of your sight. Teach your son that it’s not a matter of if a reaction occurs, but when a reaction occurs, so that he will be prepared and always have his adrenaline auto-injectors with him.’” – Leah Rued

Parents always think there will be plenty of time in the future to teach their children how to do things. However, it doesn’t work like that. Children inevitably push the boundaries and try to grow up before their parents are ready for it.  As one parent put it, “I always thought I would have time to prepare my son to know what to do to avoid a reaction and what to do if one happened. But I was wrong. He was ready to spread his wings and reach for independence long before I’d expected.”

It is unrealistic to expect that one day we will sit down with our children and pass on the control of their allergies. The fact is that letting go and teaching responsibility is a process that will develop over years.

This article is a parents’ guide to teaching their children how to live with allergies. Every parent will have a different approach. There is no one correct way, nor is there a set pattern. The words you use will change as your child grows, but the principles will remain the same.

When do you begin?

As with other things, learning begins at a very early age. Toddlers are taught not to touch a hot stove or to put small objects in their mouths. Likewise, it’s important to start teaching children as soon as possible about avoiding certain foods, and knowing what to do if they eat something they react to.

Keeping calm

Children are always quick to pick up on any anxiety that you feel. To reduce your own anxiety, become well-informed on the subject of allergies. Talk through any concerns or problems with your doctor and with the Anaphylaxis Campaign (our helpline can be contacted on 01252 542029, info@anaphylaxis.org.uk).

You can help to ensure that your own anxiety is not passed on to your child. When you tell others about your child’s allergies:

• Be matter-of-fact. Keep calm and be aware of the tone of your voice and the unspoken messages you are sending your child when you educate others
• Be careful of the language you use when you talk about the dangers.  Although it’s important to convey seriousness, constant references to death will not help
• Involve your child when teaching others. Avoid talking about your child’s allergies as if he/she is not present
• Remember that the aim is to help your child to feel empowered to handle people and situations. Be careful not to instill panic or fear, which may overwhelm and stifle your child
• Find reliable articles that discuss allergies, including fact sheets produced by the Anaphylaxis Campaign, and show them to babysitters, friends, relatives, and others. Sometimes, if the information comes from a source other than yourself, or in writing, others are able to grasp the concepts more easily.

The role of self-esteem

Children need a protective base (home) from which to grow and the courage to spread their wings and feel safe away from that base. To do this, they need to be comfortable with themselves – and have a strong sense of self-worth.

A child’s self-esteem is based, in part, on whether the parents take their child’s needs and wishes seriously, and whether the child is treated with respect and dignity. That’s a tall order for families who are raising allergic children. For many parents and carers, the natural tendency is to focus on what needs to be done to avoid a reaction and ignore the child’s needs and wishes.  But this model has only short-term value. The child may end up lacking confidence and find it hard to assess risks, avoid dangerous situations and ignore unwise advice.  Children who have a good sense of self-worth will be more capable of handling peer pressures and not succumbing to them. They will need these skills when they reach their teenage years.

Handing over

Although it may be tempting for you to ask all the questions or read the food labels, remember that you are building for the future. Patience now is critical. Letting a child know from an early age that he or she has a say in decisions gives that child the confidence to “speak up” and ask questions. Ideally you want to raise a child who asks questions and makes independent decisions, regardless of peer pressure. A child with a “can do” attitude will have fewer problems. To get that, you must begin early to lay the groundwork.

Saying ‘no’

It is vital to be able to equip children to say ‘no’ to peer pressure and to learn to make up their own minds about risk.  They are going to need to be able to say ‘no’ to cigarettes, drugs, alcohol – and the food they are allergic to. By listening to your children and respecting their choice to say “no” within the family, they will gain the confidence to be able to stand up for themselves outside.

Keep expectations realistic

Modify your strategies as your child grows older. Keeping things too simple may hinder your child’s ownership of the allergy but if your expectations are set above the child’s capability, your child may feel defeated. Overprotection can send the signal that you think your child is not capable of handling situations. You will need to search for a balance that’s right for your family.

Reading food labels

From an early age, start to teach your child the importance of reading food labels, asking questions about food, identifying certain foods, and not accepting food from anyone other than known, trusted adults.

Use accurate words for safe food substitutions to avoid confusion. For example, if your child is milk-allergic and drinks soya milk, call it “soya drink”, leaving out the word “milk.”

Make food allergy management fun. Each time your child remembers to read a label, ask questions, or recognise an allergy word, reinforce it with a kiss, a hug or any other positive, loving gesture your son or daughter would enjoy.

If your child is too young to read, then you can read the label ingredients aloud and ask your child to stop you when he or she hears an allergy word.

Educating your child

Children with allergy to a food need to know what the food looks like. When you go to the shop, you could point out the food on the shelf (e.g. a packet of nuts), or alternatively show them a colour picture of the food.

It’s also important from an early age to show them what words to look out for (e.g. dairy, nuts, egg, allergies). One helpful idea is to make an allergy scrapbook with your child, or create flashcards. List in large, colourful letters the foods or substances that cause the problems.

Helpful tips

• Keep a copy of the allergy book in your car and use it when you go out to eat. Be sure to have a picture of cheese if your child is allergic to milk. If you go to a fast-food restaurant, show your child that burgers can come with and without cheese.
• When your child gets a little older ask him or her to read the ingredient statements on a few products to see if the “allergy word” appears on the label.

Identify high-risk foods

Explain that some foods can be particularly risky and teach your child to take extra care with these foods while away from home. For example, high-risk foods for people with nut allergy include curries, desserts, biscuits, some breads, and some sauces. Prepare safe versions of these foods at home so your child has the opportunity to have them in a safe environment. This teaches the child that he or she isn’t being denied foods, but is simply avoiding risky situations.

Trading for treats

Allergic children need to avoid certain foods but there are ways of ensuring that they do not feel they are missing out on something.

Sarah, a mother of a nut-allergic child, found a way that worked for her:

“I asked my son what his favourite treat was and he said it was a particular brand of ice-cream, which was nut-free. I made a deal with him. We went to the supermarket and bought two cartons of this ice cream. I told him this was for him only, and we would always have it at home. Whenever someone gave him a treat that looked suspect, he could trade it and eat an ice cream bar as soon as he got home. He wouldn’t have to wait until after dinner.

“On one occasion, the driver of the school bus gave all the children a sweet for ‘being good.’ My son hopped off the bus with a big smile and said, ‘It’s ice cream bar time!’ and produced the sweet that had nuts in it. I wanted to reinforce his ability to not eat tempting treats and, yet, to not feel like he was missing out. ‘Trading for treats’ was a huge success.”

Whatever works for you, remember that the goal is to provide your child with a sense of control over the allergy, and to realise that he or she has options.

At school

There may be times in the school setting when well-meaning parents or teachers forget about your child’s allergy. Encourage your child to speak up.  Say you will support his or her decisions about not eating certain foods, in spite of what the teacher or other people may say. Speaking up will empower a child to take responsibility for situations.

As children enter school, they can be encouraged to recruit friends. Friends can help allergic children avoid risk, and can speak up for them when necessary. They can turn out to be your child’s best safety net.

“My friends really help me out. If they bring food to school to give to everyone, they’ll usually bring in a separate one for me that doesn’t have peanuts in it.”14-year-old food-allergic girl

In time, your child could take the lead in educating teachers about allergies. Practise at home and be sure your child is comfortable in stating what the allergy is and what symptoms might occur. Include your child as part of the problem-solving team that determines what steps should be in place, and who to notify in case a reaction occurs. If your child has been taught from an early age to manage allergies in a matter-of-fact way, this type of meeting will seem like a natural extension of all the work you have both been doing throughout the years.

Bullying

There is no quick and easy answer to the problem of bullying. But encouraging your child to include their friends in their allergy management will help if someone tries to tease them, pick on them, or bully them about their allergy.

Eating at restaurants

It can be natural for parents to want to maintain tight control in a restaurant setting. Balance caution with education. Don’t wait until your child is 12 years old to begin lessons on how to order a restaurant meal. By this age, many children will be spending time with friends, including eating out. Your window of opportunity appears when children are much younger.

Expose your child to as many new dining situations as possible. Allow the child to order food while you are able to supervise, at places such as sports events, cinemas, fast-food restaurants, holiday sites, etc. You both will learn something new from each situation.

Teach your child at an early age that there are restaurants that are particularly high-risk places. For example, Asian restaurants are risky for people with peanut, tree nut, or fish allergy. Buffet queues are also potentially high-risk situations. Help your child to assess and minimise risks.

Special tip

Avoid ordering fast-food from drive-in takeaways. Go inside and speak with a real person. Eye contact is important when you explain your allergies. Ask to see the ingredient lists, too.

Don’t become too anxious when your child makes mistakes at first when ordering a meal. Use these mistakes as an opportunity to educate. Be sure, however, not to embarrass your child in front of the restaurant staff or friends. To minimise mistakes, review basic questions and menu selection ideas at home before leaving for the restaurant. Once there, let your child do the ordering. If a question has not been asked, bring it up discreetly. For example, say to the waiter, “I also have a question for you…”

Treat your child with respect and you’ll get it back tenfold. Ask your child before you leave for the restaurant how you should handle a particular situation that may come up. For example, “What if the waiter doesn’t take you seriously? Should we speak up or let you handle it?” Teach your child to trust his or her instincts. If the waiter doesn’t quite get the point, encourage your child to ask to speak to the manager or chef.

Your goal is to build your child’s confidence in asking the right questions, making the right decisions and learning from mistakes. Although the menu selection process will be less stressful and less time-consuming if you make all the decisions, remember that your goal is a long-term one – to prepare your child to do this naturally when you’re not there. You want it to become second nature for your child to ask about meal preparation and ingredients ­– that will only come after years of practice.

Handling difficult people

We all know there will be difficult people in our lives. As adults, we learn how to work around them. Teach your child how to do so as well, particularly when it involves eating at the home of a relative or friend.  Discuss how to handle these situations. Be ready to step in to help if the situation gets out of control. Your priority is to give your child a sense of accomplishment, empowerment and control; don’t wait until the child feels defeated before helping out. Once again, however, do so discreetly and give control back to your child once the situation is cleared up. Make sure they know you will back up their decision to say ‘no’ to eating a new food or something they are not confident about.

Talk about situations that may arise when you are not present. Help your child learn how to politely, but firmly, refuse to eat certain foods. Emphasise that he or she must always think about his or her allergies. Explain that there will always be people that don’t “get it,” so it’s up to your child to take responsibility for avoiding risky foods.

Rachel, aged 11, helped out every week with a group of disabled children. One day the parents of one of the disabled youngsters held a party. Rachel hadn’t told them she was nut-allergic and they provided home-made cakes, which they offered to Rachel as well as to all of the other children. Rachel refused to eat any of the home-made cakes, instead choosing a shop-bought cake with an ingredient list on the box. The parents thought Rachel was being fussy, and tried to force the home-made cakes on her, but she politely stood her ground. When she finally explained she was allergic to nuts, they understood.

Recognising a reaction

Teach your child what symptoms to expect, with words appropriate for their age.  For example, a toddler may only need to know, “nuts will make you very poorly.” A 12-year-old should know in more detail the symptoms that may occur. However, be careful not to be so graphic that your child develops a fear of eating. Instead, stress the importance of avoiding high-risk foods and getting help quickly if a reaction occurs.

Treating a reaction

At some point, children will need to know how to treat a reaction themselves. As soon as your child is ready to understand what treatment entails, you could go through the procedure using a trainer pen, following the patient information leaflet supplied with your child’s injector pen.

Carrying medication

From the beginning, teach your child never to leave home without prescribed medications. Being prepared for an allergic reaction is the key to a safe life. Starting at an early age, have your child become responsible for carrying the medication to the car. If your child forgets it, turn around and go home. Being that strict with this rule will save you lots of stress and arguments later.

Parents are role models to their children. If you sometimes leave your child’s medication kit at home when you go out, it will be natural that this is what your child will learn to do.

Packing the adrenaline kit

One of the frequent questions parents ask is how to conceal the adrenaline kit so their children will carry it. This is easiest for girls who carry handbags. However, there are a number of other solutions that families have found along the way. A mobile phone case is just one, or you may find something suitable in a camping shop. As with other decisions about allergies, allow your child to have a say in how the kit is carried, so that it becomes the child’s decision, not another directive from Mum and Dad.

Recruiting Friends

Have your child teach close friends about food allergies, what foods to avoid, and what to do if a reaction occurs.

One mum had this to say: “We presented the following scenario to our son’s friends: ‘You and our son are at your house and you have a snack. Then you head out on your bikes. On the way, our son starts coughing, his lips are swelling, and he is having trouble breathing. This is what you need to do…’ Teach the friends’ parents, as well. Chances are, your child will be spending a lot of time at their house.”

You could show your child’s friends the Anaphylaxis Campaign films ABC what do do in an emergency, Anaphylaxis and Me and #TakeTheKit

How friends can help

Here are a few pointers that friends need to remember:

• Do be supportive of your friend’s food decisions.
• Do encourage the allergic friend to read the label before eating.
• Don’t say things such as, “It’s probably OK…”
• Do know how to use the adrenaline kit in case your friend is unable to use it.
• If a reaction occurs, do make sure an ambulance is called.

Some final points

• Every day, when you make decisions about how to handle your son or daughter’s allergy, ask yourself, “Am I teaching my child the skills to stay safe when I’m not there?”
• It may be helpful for your child to realise that people face all kinds of barriers as they go through life. Many children have diabetes, epilepsy or even more serious conditions. Others may feel desperately uncomfortable about the way they look. Teach your children to be positive and look at all they can have, instead of dwelling on what they can’t have.
• Teach your children how to make the right choices for themselves rather than dictating what they must do because you said so. This teaches them to be independent thinkers and to become self-reliant.
• Keep allergies in perspective; they are only part of your child’s life, not the entire focus.

As children grow, they need to be able to:

• Handle risks
• Handle peer pressure
• Handle social situations
• Grocery shop
• Cook
• Establish emergency protocols
• Establish support systems
• Develop emergency back-ups

Special thanks to:

Prof John Warner, Professor of Child Health at the University of Southampton.

Anne Munoz-Furlong founder and president of the Food Allergy & Anaphylaxis Network in the USA (FAAN).

Jennifer Percival, specialist nurse and health education consultant

 And all the parents and children who provided suggestions and special tips.