The parent with a custom-diet-kid knows that the task of creating a veritable bubble of safely-nutritious foods at home pales in comparison to the challenge of extending that protection to your child's school. This is inevitably an exercise in communicating, planning, trust and (as much as I hate to say it) letting go.
Let me start with the caveat that my own kids' have reactions to a significant number of foods, but that those reactions are caused not by food allergies but by intolerances in one case and a mast cell disorder in the other. This means that they are not at risk of anaphylaxis or the type of long-term damage at risk in celiac disease. As such, these ideas may just be scratching the surface of what is needed for your child. Make sure you talk with your child's doctor about the additional precautions and procedures you should put in place to make sure your own child's safety needs are met. Also, if your child is at risk of having an anaphylactic or other severe medical reaction involving one or more bodily systems, they may be legally entitled to a section 504 plan. This is an educational plan negotiated between you and the school outlining what precautions are necessary to keep him or her both safe and included, just as would be done if your child had a phsyical disability requiring special care. For more information on this and other special issues facing parents of severely-allergic children, FARE (Food Allergy Research and Education) has a number of resources for parents on their website that may be helpful to you.
With that said, here are some things that have worked for us in helping our kids through their own custom diet:
1. Recruit partners in Project Keep-My-Child-Safe.
Perhaps the most important part of this process is the first one: helping your child's teacher and school administrators understand your child's restrictions and determine together what precautions are needed to keep him safe at school. Sitting at a peanut-free table in the cafeteria? Keeping paper placemats on-hand to put a layer between herself and the tables? Enforcing a "no-sharing" snacks policy in the classroom? Offering him paper cups at preschool rather than risking cross-contamination in the day care's dishwasher?
This stuff isn't rocket science but it does require careful thought and focus from your child's teacher -- while he or she is in the midst of a room full of children! In light of this reality, in our view the best protection you can give your child is to surround him or her with adults who know - and care - about your child's food challenges. Identify as many staff members as you can that will be responsible for your child at some point during the day - and especially during any moment when food may be present. Your child's teacher is an obvious starting point - but what about the teaching aid and class mom who will be on-hand during a class birthday party? Which teachers or administrators are responsible for supervising lunchtime in the cafeteria? And to the extent your child's issues permit them to eat a school lunch, who's the chef - and equally important, who actually picks up that spoon and serves the food to the children?
Now, to be sure, it's not your place to tell all these people how to do their jobs, although if your child needs specific and unusual precautions then I think it is just plain wise to try to communicate those directions directly to the folks who will have to execute them. But I seek all these people out for an additional reason: to make them a partner in Project Keep My Child Safe. Each of us is only human -- which means that the better they understand and more genuinely they care about your child's special food-related needs, the more likely they are to zero in on them despite the din of school-room chaos.
So swing by the cafeteria at lunch time if the administration will allow, chat with the secretary in the front office and get to know the school nurse. Tell them how your little angel just loves the school and how much you appreciate that they make it safe for him to be there even though he has all those food issues. Tell them all about how you diagnosed them, what happens when he eats them, how cheerfully he settles for those gluten-free granola bars -- you name it.
"But this isn't any of their business," you may be thinking.
Probably not, and it's important to recognize that your child also has privacy rights which ensure that you don't have to share this information if you don't want to. But it is human nature to fear or feel an aversion towards that which we don't understand and the bottom line is that very few adults who haven't lived through a food-related health problem within their immediate family can really relate to what this is like or how it affects a child's life. I've found that they become most interested in helping when I don't just tell them but show them, in a way that makes them feel comfortable enough to care about that experience and do what they can to make it better. In our own experience, sharing the details (without of course sharing unnecessary tidbits that your little one's age-appropriate sense of privacy just couldn't tolerate) is a big part of that process.
2. Communicate very specific instructions early, often and in as many ways as you reasonably can.
Okay, so now that you have an army of concerned, attentive grown-ups, what do you want them to do?
We start with the assumption that no matter what its size, a school is a chaotic environment and the adults in charge are by necessity doing triage much of the time. If you need these grownups to do something different from what they ordinarily do, you'd better be pretty specific about it. Talk to your teacher, drop those placemats by the school cafeteria - and in each case, make sure to provide a list oftheir food constraints, along with the signs and symptoms of any reactions requiring immediate attention.
Anytime anyone other than yourself and your child will be involved in serving her food, you can help safeguard against these instructions getting lost in the shuffle by writing them right on the containers you send them in, using special write-on, wipe-off labels meant for foods and that can even go through the dishwasher. For instance, we send all of our toddler's foods to school in glass storage boxes (glass is far less prone to cross-contamination than plastic), labelled in each case with his name and a note that the food should only be microwaved in that container, and then transferred to his dedicated plate.
3. Plan ahead - and stay ahead of pesky classroom parties.
Okay, so you're carefully packing and labelling all your child's school-time foods, you've got your lunch-room precautions down pat and your in-class snacks are going well. Then just when you think you've got things under control, it happens: someone has a birthday and here comes their mom with a tantalizing tray of foods your child can only eat in his wildest of dreams. What is meant to be a classroom treat quickly becomes, for your child, a torture. There is nothing fun in watching all your friends chow down on cupcakes overflowing with ingredients you can't eat, from the vast distance of 10 inches away.
We'll be posting other tips in our blog in the future about staying ahead of these parties, but this is another area where communication with your child's teacher can go a very long way. Respectfully ask him or her for a calendar of planned classroom parties, or at least for a head's up by email a couple of days in advance so that you can bring in something analogous for your child to munch on. Schedule in hand, seek out any other parents who's kids in the class are on limited diets and pool your resources, creating your own snack rotation - with foods you know all those food-restricted children can eat. That means using an allergen-free baking mix even if your child's only off gluten if that means that his classmates with the dairy, egg and nut allergies would be able to enjoy it as well. Not only will your kids be kept healthy, they'll also get the experience of sharing the same snacks as their peers -- and by rotating duties among all the food-restricted families you'll have less work to do.
Hopefully, these suggestions will help you keep up with snacking crises as they emerge - but it would be even better if you could head them off at the pass. Depending on their level of awareness and concern, your child's teacher can be a real ally here. Ask them to help you take a survey of what food restrictions other children in the class have and to send a note to all parents asking them to avoid sending in foods for classroom parties containing any of those foods - and help him or her develop a list of suggested substitutes to send out as well. If you can, come to one or two of these classroom celebrations and spread the word among the other parents about food restrictions and how emotionally challenging they can be for kids - this will help motivate them to go to the grocery store and find those substitutes.
We were stunned at our son's Back to School Night to hear our child's teacher, a former tri-athlete, forcefully request that families "get away from the food theme" for in-class birthday parties this year. "We have a number of children in here with food allergies and I would really rather you all stick to things that all of them can eat -- maybe a little fruit salad and then move on to doing a craft or something."
Wow. Did she really just say that?
4. Don't be shy, for your kid or the others.
None of us wants to be that bothersome mom always asserting her kid's special issues but I have discovered that there is a fine line between complaining and leadership. Time and time again, I've bolstered the courage to stick my neck out on an issue that's important for my kids and have been stunned to find how many other parents had - or immediately empathized with - the same concern.
Food allergies and intolerances are a big issue among America's children and the instances of it are only growing. Add to this the epidemic of obescity among our children and it should be clear that schoolyard diets need to change, and to differentiate. Many schools and other child-oriented organizations have gone "nut-free"; unfortunately, in my experience there is still little awareness that many other common foods can cause equally dire reactions in some children.
Stand up for these kids -- even if they aren't your own. Be an evangelist for all kids who's diets are restricted by allergies, sensitivities, the need to lose weight or other special cases. Help all parents in your school community understand that food is not one-size-fits-all and that one child's nutritious snack may be another's fatal poison. Share with them how hard it is to be left out of the classroom feast - and how dangerous it is to bring in those temptations - but stay upbeat and focus on how easy it is to provide substitutions that bring everyone back to the table.
Most of all, be a champion for the most inclusive food policies possible - meaning, the ones that will include the most children. The more these precautions are built into the fabric of how your school operates, the less your child's own issues (wherever they may fall on that spectrum) will make him stick out -- and the fewer circumstances in which he will be excluded because of them. And the less you'll be stuck being the baker, the advocate and worst of all, the drier of tears.