It's such a little word. But I came to realize this weekend that it makes all the difference in our interactions with others.
We dropped our son off for a week at a major state university, a week that's devoted to the study of politics and government, a week for which he qualified through a scholarship. We should have been all the things the other parents were - excited, wistful, proud beyond measure.
And we were. But they were all drowned out by fear.
I've done everything I can possibly do to make this week safe. I've read every label, met with food service, emphasized the pitfalls like the thoughtless pat of butter or shared cereal containers. I've talked with the camp director, health services, the adult counselors. I know they have the very best of intentions, and that they don't want anything to happen on their watch.
I also do not know if I can trust them.
You see, the food services lady seemed so very nice. She was expecting her own child. She had obviously dealt with special meal plans before. And yet...there were so many things she initially missed, so many people in that kitchen (and she could not be there every time, every meal). I have to trust them all. But I can't possibly KNOW them all.
I have to trust that the adult counselor will be available, should my son have a reaction. That he will believe my son, support my son, listen when I say he should just call 911 and not rely on the campus health service. I have to hope he will not freeze if my son is incapacitated, or just too shaky to give the injection.
I have to trust that the health director really does understand anaphylaxis and isn't just giving lip service to the situation, hoping to play it by ear if it really happens.
I have to trust that the other boys won't bully, won't slip peanut butter in, won't single him out so he gets distraught and perhaps takes a stupid risk.
And most of all, I have to trust my son. I've given him meal-by-meal instructions, talked through the scenarios. Yes, I've probably done too much hand-holding, but how do you not hold the hand of your child? The only way you can know that your child is ready for you to let him go is by letting him go.
I've let go. I just have to trust that his wings will open and that he can handle whatever comes.
I have to trust that he will come home again. What else can we do? The alternative of keeping them in the nest forever is so much worse.
I'll indulge in a little bit of mommy blubbering now. When my son was not yet school age, he came running into the house with tears in his eyes. "It's on the GROUND! They're hurt! You have to HELP!" He was so distraught that it was hard to make sense of it all, but eventually I figured out that a robin's nest had been blown out of the neighbor's tree during the previous night's storm.
I went to see what could be done. One little robin had been smashed by the fall and was clearly dead, but the other two were near the nest and quite vocal. I picked them up and put them in the nest. However, the next step was harder - the tree's lowest branch was a good 15 feet up, so they were clearly not going back into their old tree.
We puzzled through it over the next few hours. We tried chopping worms and feeding the little birds, but it wasn't terribly successful. After a while of this, I noticed that there was an adult bird who had been hovering around us for some time. "Let's try something," I told my son. We put the nest in a simple hanging planter and hung it from the lowest branch of the tree in our yard. Sure enough, the mother bird immediately started feeding the noisy babies as soon as we moved a distance away.
My son looked dubiously at the nest. "I don't think they're gonna be safe there, Mom. You need to find a way to keep them safe too." He was right. So...we got out the big ladder and the duct tape and we bound that planter into a V fork much higher up the tree. And sure enough, the mother again made the adjustment and fed those babies.
The babes were already well-feathered - it took only a week or 10 days before they fledged and were gone. What had seemed an insurmountable problem had just required a slightly less-orthodox approach.
I think I'll go mail my son a role of duct tape. It can't hurt, right?
Thank you to everyone who supported my last blog post. I did not expect my opinion to be popular and was really touched by the support I received. ("Mom! There really ARE people in the world like me!")
However, as always, there were critics. The main criticism seemed to be: "we NEED horror stories in order to keep our children safe."
Conditioning.
What we're talking about is conditioning. We all do it as parents from almost the day our children are born:
Say thank you, darling. Don't wipe your snot on your hand! Use a tissue! Quit hitting your brother! LOWER the PUMPKIN to your FATHER and come DOWN OFF THAT ROOF!
(Well, o.k., some of you probably condition slightly differently than I do.)
Food allergy conditioning takes both positive and negative forms:
1. Avoiding food. No casual sampling at grocery stores. No unknown cake at parties. Smile politely and nibble the parsley at buffets. Get only a soda if your friends go to a restaurant. We teach our children to delay gratification every single day in a world filled to the brim with temptations. The question is: do all children have the same capacity for delaying gratification (i.e., avoiding allergenic foods)?
The video above documents the famous "Stanford Marshmallow Experiment" in which children ranging in age from 4 to 6 are offered a marshmallow. If they can wait until the researcher returns, they're promised TWO marshmallows.
About 70% of children tested do not eat the marshmallow. And – guess what – later in life, their ability to delay gratification correlated with higher SAT scores and general school success.
So what does this mean for us allergy mothers? Children can be conditioned to avoid foods/delay gratification. However, continuous reinforcement is required for many kids. Most will give up the Halloween candy if the promise of the toy they're trading it for is large enough and talked about enough, and if they have developed enough natural ability to wait. But a large percentage simply cannot wait. They are hard-wired to have more trouble. If you have one of these children, you're going to work twice as hard and twice as long at conditioning avoidance as other mothers, and there may be a genetic set-up that simply makes your child more impulsive, no matter what you do.
2. Checking ingredient labels. Read every label, every time. That seems so straightforward! So why do children so often turn that into "read labels when a food looks different"?
My mother, the clinical psychologist, tells me that this is a brain immaturity issue. Grouping objects ("I know all pretzels are safe") is the way they develop a manageable frame of reference for the world. However, that frame of reference is being continually refined. By kindergarten, most kids can group objects using two variables ("pretzels that are safe for me" vs. "pretzels that are not safe for me"). However, the sets and subsets of safe foods and ingredients can be very complex, meaning that children have a difficult time consistently grouping items until well into grade school ("Newman's Organic pretzel rods that are safe for me vs. Frito Lay RoldGold pretzel twists that are not safe for me).
Reading a label also requires a number of skills we don't even think about as adults. We know that ingredients make up foods, and that foods that look the same can have very different ingredients. We need to have the vocabulary and spelling skills to be able to interpret difficult ingredients. We need to understand grammatical rules of punctuation and grouping (e.g., "soy flour" vs. "soybean oil, flour"). We need to hunt for information that appears in different places, without dependable patterns. We need to consider somewhat esoteric factors ("was this chocolate manufactured in Europe where labeling rules are different?"). We may need to understand whether a food is regulated by one agency vs. another (such as the FDA/USDA division in the U.S.). We need to double-check our work.
So, in addition to conditioning our children to read labels, we also need to teach these skills sets, some of which are not fully in place until the teen years.
3. Carrying medication. A teen boy's pathological need to avoid carrying anything that looks even REMOTELY like a purse and a teen girl's pathological need to fashionably fit with her friends makes this one a project for all of childhood. It isn't just about forgetting. It's also about image, which means it needs to be renegotiated as the child's self image changes.
It seems like a good idea to get our children used to wearing their medicine on a belt or clipped pouch at an early age. But, social issues quickly creep in. Teasing about the "bulge", changing for jr. high gym class, fashion...all can make our kids toss our careful conditioning out the window.
We can look for the obvious opportunities to help our kids blend in. A set of medication in the school backpack is easy. A bag on the back of a bike is usually acceptable. An Epi in a coat pocket, or cargo shorts. But conditioning our children to always carry medication usually means conditioning them to carry it in the same way every time. That's where parents of teens run into trouble.
And, conditioning requires reinforcement. In the marshmallow study, kids get the marshmallow. When it comes to carrying medication, there is no marshmallow. Kids have to consistently do something that has no reward, and often has a social consequence from their perspective. It's easy to see why carrying meds becomes a flash point.
Interestingly, the best defense against risky behavior seems somewhat counterintuitive: arguing with your teen. A recent study showed that effective, give-and-take arguing with parents actually helps kids resist peer pressure. In situations where mothers continually reasserted their view and the teen backed down, the teens were later MORE likely to take risks than in situations where mothers listened to their teen's opinion and ceded some autonomy. In other words, teens who agree with their mothers the most are also the ones most likely to ditch their medicine bags once they leave the house.
I don't think there are any easy answers on this one. A bad reaction can help reinforce the need to carry medication, but that's a very dangerous method of training. Perhaps the e-cue epinephrine device (supposedly coming to market in November) will make a difference for our kids.
I suppose the point of this post is to question the practice of using anaphylaxis deaths as a means to reinforce conditioning. If you look at these three areas where conditioning is required, brain development and acquisition of skill sets is also required. No amount of fear is going to help a child learn the complexities of label reading, or learn to group object sets faster. And, as I pointed out in my post about exaggerating food allergies, constantly harping on death, a consequence a child is often developmentally unable to process, can cause a child to become desensitized and overly pessimistic.
We can make our kids feel helpless and hopeless with horror stories. Or, we can give them the training and conditioning they need to effectively manage their allergy, along with a positive outlook and belief that they can manage their allergy.
Isn't it time to limit the ghost stories to the family campfire? Much better to spend the time on label reading, appropriate avoidance and carrying meds so we can ALL safely enjoy the s'mores.
We all dream about life without food allergies. What makes it especially hard for me is that I've heard now for 17 years that "a cure is just five years away." (Now I didn't do well in high school math, but even I know the numbers don't add up there.)
When I get really bummed out, I think about what it would actually be like if the wish came true and my son outgrew all his food allergies:
He could travel anywhere. No thoughts about whether there's a good enough hospital, close enough, with the right equipment. No concerns about finding appropriate foods. Cruises...rural camping... exotic locations...college semester abroad...backpacking through Europe: all on the completely-manageable list of possibilities.
He could eat in any restaurant. No more only four restaurants in his future! There would be no calls to the manager before he went, asking about the kitchen in general and their comfort level with cross-contamination. There would be no conversations that border on confrontation in order to ensure that everyone who touches his food really knows what's going on. We would no longer discard whole worlds of food (Chinese! Indian! Italian!) because of the risk. He wouldn't have to carry in his own bread and salad dressing. We wouldn't have to watch him like a hawk after eating. We wouldn't have to argue with food establishments about the legality of carrying our own food in. He could eat dessert.
He could kiss a girl if he wanted. No worries about whether she had eaten peanut or put on lip gloss containing soy protein. No wondering if the hands of the girl he's holding at the dance were just dipped in the buttered popcorn a few minutes before. No awkward questions and avoiding the whole situation because it's just too embarrassing.
He could carelessly socialize with his friends. No going back for the medication bag (which looks like a purse no matter what we do). No negotiating which restaurant so he can eat something. No avoiding the school pancake breakfasts and language food days and United Nations weekend trips because they're so food-centric.
He could get a part-time job without concern. So what if he had to handle peanut-butter cookies, or make coffee drinks with cream? Without food allergies, he doesn't have to worry any more if he touches his contaminated finger to his eye. Look ma, no reaction!
He could have a reasonable amount of stress about leaving home. No thinking about how to find foods, store foods, cook foods. No missing out on communal dining and cookies sent by other kids' parents. No psychological weight of a possible reaction: anywhere he eats, everywhere he goes. No balance between telling people for safety's sake and boring/ annoying/ alienating people by talking about it. No convincing, cajoling, educating, avoiding. No need to question whether they believe, whether they would help, whether they might even harm.
I know I'm whining. I remember my pediatrician tell me when he was little "just be grateful it isn't something really bad, like cystic fibrosis or diabetes." I understand that, I really do. My child is healthy. He's happy. He's reasonably well adjusted.
But I'm a MOM. I want what every mom wants: no limits for his future. No risks.
Clearly I can't have that. But I can dream, can't I?
I'm the mom of an 19 year old who has outgrown milk, soy, pea and bean allergies! Hallelujah! He's still allergic to peanut and possibly hazelnut, lentils and black beans. We also have a 15 year old daughter with no food allergies.
