What Does It Mean To Be A Good Food Allergy Mother?

As part of the college application process, parents are asked to write a summary of their child's strengths, weaknesses and issues that may have affected their high school performance. The summary is then used by the child's guidance counselor to write a letter of recommendation (one the parent never sees) to the colleges to which the child is applying.

I found myself writing at length about my son's food allergies, including the following:

Other people really don't understand the effect food allergies have on kids, socially and anxiety-wise. My son has had four major reactions that involved breathing difficulties and rescue meds; he's had countless other reactions that did not progress as far, but that made him sick. Coping with the fear of a reaction and learning to make good decisions, cook his own food, and watch out for potential issues (like kissing someone who has eaten peanut butter) has been a major undertaking.

There was more before and after that paragraph: about the clinical trial, about exclusion, anxiety, expectations, maturity. There was a lot. I wrote and wrote and wrote.

And then I took it all back out.

It occurred to me that the high school counselor would likely interpret it, no matter how well written, as overprotectiveness. What exactly is overprotectiveness? I wondered as I looked at the blinking cursor. Would I know if I had the dread disease? Or, is it like racism, where everyone can only see it in others but either don't see it or excuse it in themselves?

And, more important, if my definition and the high school counselor's definition of "appropriately protective" vs. "overprotective" are different, who wins? Clearly, in this situation, what she thinks matters a whole lot more than what I think. I had already had past conversations with this counselor. It was clear that no amount of education was going to change her opinion.Yet her letter will carry enormous weight with these schools.

There is, of course, another way to look at the situation. I could include reams and reams of information about food allergies. I could let my anxiety all hang out. I could emphasize what my son missed out on throughout his school years. I could magnify the bullying incidents. I could complain about the uncaring teaching and support staff. I could rally against a society that teases and marginalizes kids with a medical disorder. I could name the dead kids...quote the test scores...talk about death from food allergy as likely or even certain.

I could be full-out Helicopter Mom in the hopes that the counselor opened her letter to the colleges with:

"In my 20 years of experience as a high school guidance counselor, I have never met a more anxious, over-involved and domineering mother than this student's mother. I am recommending strongly that you accept him at your college as a means of extracting him from this obviously unhealthy home environment."

But that would be incredibly self-centered and stupid. (Wouldn't it?)

So, I am starting the survey over, with the following Rules For Good Mothers of Food-Allergic Children displayed prominently over my monitor:

1. I will not make it all about me. It's about him. If I get gratification from thinking of and portraying myself as a Food Allergy Wondermom who deals with more than other moms, I need to STOMP IT OUT. This is his normal. It needs to be my normal as well. There is no blue ribbon for food allergy mothering. 


2. I will focus on facts, not emotions. My heart is saying HE COULD DIE DIE DIE DON'T LET HIM OUT OF YOUR SIGHT! My head is saying that one child died at college last year from food allergies, out of approximately 100,000 freshmen with food allergies who attended college*. My son literally has a greater chance of dying from a lightning strike (83,000 to 1), presumably even less if we prepare well. 


3. I will not exaggerate! It's so easy to slip into full-out hyperbole. And let's be honest...the more danger there is to our kids, the more justified we can feel about our helicoptering. If death is truly not a possibility, then the protective-vs.-overprotective equation changes dramatically. (That's why so many chat boards emphasize, over and over again, food allergy deaths: because it's the only meaningful excuse for bad parenting behaviors.)
    
4. I will restrict only what I must restrict for these last months before he leaves. I will not confuse more restrictions with more love or care. Avoiding foods, social situations and opportunities because of my own fear is wrong, and really bad parenting. I will deal with my own anxieties so my child can participate in every activity that is not demonstrably dangerous for him.

Such a little list. Such a hard thing to really put in practice. It's amazing how much of my own personal identity (friends, chat boards, activities, this blog) is derived from my son's health issue.

But that's what college is supposed to be about, isn't it? Stepping back and letting the child take control. If I'm honest with myself, I can see that I've made it a lot harder than it had to be, both for me and for him. And isn't that the real definition of a Helicopter Mother?

Guilty as charged.

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*6,000,000 kids with allergies in the U.S. divided by 18 years = 3333,333. 50% college attendance rate ~150,000. I reduced some because kids with allergies skew younger.

Getting What We Need

Lately, I've been somewhat removed from The Quest to Get What My Son Needs. But now, with college, The Quest begins anew.

About a week ago, he came home, beaming from ear to ear. He had been awarded a scholarship from a local organization to attend to a prestigious summer program for juniors interested in government. This is a GIANT deal for him. My son is quiet and shy, so the fact that he was able to impress his interviewers enough to be chosen for this says a lot about how badly he wants to do it. But it's a full week away at a college campus, with hundreds of other kids.

It feels like pushing the boulder up the hill again, writing all these emails to start the process. But write them I did: to the camp organizer, the organization that gave him the scholarship, the campus health service, the food service. And now I wait.

As I sit here, fuming that this is taking so long ("If I have to COOK for the whole week I need to get STARTED, you know!"), it has made me realize that I have gained some insights into what keeps things rolling and what just causes the boulder to settle in deeper. I offer them here to you. (And me. I'm definitely writing this for me. Maybe I'll listen to myself this time.)

1. Don't tell the whole story to everyone. 

I still fight this. I have food allergy diarrhea mouth, as I've established elsewhere. I want everyone to know right away that they're FOOD ALLERGIES and they're SERIOUS and they NEED TO LISTEN!

But usually I get passed from person to person until they actually establish who's going to be responsible for the food, responsible for the health care, responsible for the supervision. At the beginning of the process, the people who will ultimately be responsible are not even necessarily selected yet. (That will be the case with the adult counselors for this program - I am simply writing them a letter, explaining my son's health issues and seemingly excessive medication consumption.) Sending a long email up front just makes us look bonkers. A few sentences will suffice until you've identified the right person.

Likewise, I truly believe that leading with Dead Kid Stories does not help us. Other people just don't have the frame of reference to understand our fear and focusing on the worst-case scenario can make us seem over the top.

2. Don't carry over resentment from the last battle.

Yes, it was really hard to deal with that Outdoor Ed guy. Yes, he made a mistake and missed an ingredient that could have resulted in a reaction. But leading with that story just makes them defensive because they will identify with people in similar roles to their own.

If there's something to be learned from the incident, try to make it neutral ("we've found that it can be hard for people unfamiliar with our son's allergies to catch all problem ingredients") instead of specific ("yeah, that last food service guy totally screwed up"). It also never hurts to express faith that they are competent at doing their job, even if you don't know (or believe) they are. Butter the toast, baby!

3. When you find the right person, be specific and factual about what you need.

People don't read any more. (I like to think my blog is an exception...but really - shorter is better.)

That means make a LIST with ACTION words. Any sentences that start with "We think" or "We feel" or "In the past" should be ruthlessly removed from letters and replaced with sentences that include an action, a participant and a timeline:

I will need to review all labels prior to the start of camp
You will need to develop a set menu by 5/30 so we can review it together

We all want to tell our story to channel our anxiety, but that's not as important as getting at the heart of what it is we're asking them to do.

4. Show a united front.

I always copy in my husband and I use his work email. That tells the people on the other end that they are dealing with TWO crazy parents (and that one of them works for a respectable company that must see SOMETHING in him). And yes, I've found that his maleness and tallness can also be key weapons in getting people to pay attention and not condescend.

We don't have to like sexism to use it to our advantage.

5. Keep it simple and look for the obvious pitfalls. 

I felt pretty good when I heard the food service person say "a lot of mothers of milk-allergic kids have just sent desserts and breads." Smart decision! There's no way a food service is going to get these areas right, since finding these things (and even making them) can be a challenge. Don't ask them to do flawlessly things that you have difficulty doing yourself.

6. Be honest about your child's capabilities. 

It's easy to feel defensive about whether our children are ready to be on their own. But it's really important to give an honest assessment of their capabilities with:

• Reading labels
• Advocating for their own needs (finding food service, speaking up if something doesn't look right, questioning adults about ingredients in prepared meals)
• Self-administering medication 
• Understanding that an adult has to be contacted IMMEDIATELY if a reaction is suspected, even if that means they are the awkward center of attention

If they can't do these things, we are responsible for ensuring there's an adult there to help, even if that adult has to be us. Don't let the school or camp shame you into not attending if you really feel you need to be there!

7. Do a walk-through with your child. 

If it's possible to do this on location, great! If not, you'll have to do a little acting.

Walking through the event with a series of questions is a great way to uncover issues you haven't thought through enough. Here are some of the "walk through" questions we've started to compile:

• Is there space on the bus for your food? Can you carry everything once you get there? If not, who will help you? (Or will I need to drive down with you...)
• Where is the freezer/pantry to store foods? Can you put things in the freezer right away, or are there activities right when you get there?  
• Who are you going to tell about your allergy? What will you do if your roommate brings a bunch of peanut butter with him?
• Will your meals be prepared at the same time, before, or after the others? Who is your contact in the cafeteria? What questions will you need to ask them about each preparation?
• How will you carry medication and ensure it travels with you if there's an emergency?

You can see my point. Envisioning each step along the way uncovers all sorts of opportunities for problems (unclaimed, thawing food left out with luggage, no time for meal prep, isolation, social issues...). It's much better to talk through it all prior to the event than deal with the phone calls (assuming they're even allowed) at the event. 

8. Take ONE step at a time and ask for help. 

It's a big boulder. They're ALL big boulders and they just get bigger as our kids get bigger. But they can all be pushed, and it's much easier to do it with a group.

There are always going to be people who don't get it. After a while, it's easy to think of everyone as just another boulder in your path up the mountain. With some people, there's nothing we can do but go around them. But many people will help if we let them...and if we don't let our assumptions and prior experiences color our interactions.

Yes, there are times when I'm pushing the boulder that I just want to step out of the way and FLATTEN some of the people I'm dealing with. But every step is worth it when we see our children standing at the top, successful in one more step toward independence. 

9. Give Don Quixote Junior the lance. 

I protect my kid too much. I do too much for him. "But it's hard!" I say to myself. "There will be time for him to learn it all...he should just have fun now."

That's when I have to take the helicopter mom inside myself and shake her silly. "Time's a tickin' -- let HIM write the emails!"

Why is it so hard to let our children do what they are capable of doing? Am I so happy to have this job that I really want it forever?

10. Don't listen to that little voice. 

I wrote tips 1-8 last week. When I came back to this, it felt like a load of crap.

See, today I feel overwhelmed by what's required. I don't WANT to call this woman and follow up. I'm afraid she's going to be mean, or condescending, or clueless. I'm afraid my child will never be self-sufficient enough to leave home. I'm afraid he'll die at camp because I didn't do a careful-enough job.

That little voice —  the one that just whispered "can't do...she's mean...she hates you...you're a bad mother...you're going to fail" needs to be SUCKED OUT INTO THE VORTEX OF SPACE!

None of the voices in my head ever have good ideas. Why do I keep listening to them?

Time to call the camp director. Wish me luck.

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Over The College Barrel

Six colleges. Six different types of campuses. Six different approaches to communal dining. And what did all of them have in common?

Cluenessness. Utter, complete cluelessness.

I had been feeling pretty good about college. Our high school counselor said "they deal with this stuff all the time, it will work out." The college admissions officers we've met at the various college fairs said "oh, yeah, food allergies are common! They make tons of accommodations!" The parents on College Confidential said "it's totally different than when we went to school and everyone ate the same thing."

This was the first time we had really sat down with food service at any of these schools. The first time we had tried to actually eat lunch during a tour. And guess what? CLUELESS!

It started with the admissions office calls. "Well," said the woman on the other end of the phone, "it looks like we're having barbeque chicken that day. Would that work for your son?"

I don't know. Would it? What are the ingredients? Did your kitchen staff use good cross-contamination protocols? Can you guarantee they followed the recipe, instead of throwing an extra dollop of butter in at the end to make it all look glossy? And, if he does have a reaction, is there anyone there to help? Will his cell phone even be able to access 911 there, assuming he's in good enough shape to dial?

I didn't say that, however. I'm infinitely aware that my son is not a catch when it comes to college admissions. He doesn't have a 4.0. He's not an athlete. There are no "hooks" to get him in the door, like us donating a library. They don't need one more reason not to admit him and the typical holistic approach to admissions at most colleges ensures that the kid with the mother who calls and badgers about food service is going to get a flag on his file.

So, we asked to talk or meet directly with food service on campus. Their responses were equally startling and horrifying.

"So your child has a gluten allergy, you say? We have a lot of gluten allergic kids on campus now." I gently remind him that gluten intolerance and food allergies are very different creatures, with only one having the possible outcome of quick death. "Oh, like a peanut allergy," was the response. "We only have a couple kids with those kind of allergies and they're all peanut. Those kids just have to learn what they can't eat."

When I told him about the MILK allergy, his eyes glazed over. "Well, I guess there's the salad bar." My husband went over to take a look. When he returned, he said "the fruit would be totally off limits all the time - there's yogurt everywhere. Even the lettuce looks like it may have sprinkle cheese in it." The three of us stared at each other.

"I guess we can go through the recipe books and see if there's going to be anything safe for him, but just about everything we make has milk in it," says the food service guy.

"You do understand that there are a TON of kids just like my son coming right behind him, right? You know that 1993-95 seems to be the start of this uptick in food allergies? That there are a couple kids in every kindergarten class now?"

"Yeah, we talked about it at a conference this year," he said. "We know it's coming. I guess I felt better because even the big schools don't know how they're going to deal with it yet. We have to figure it out, but we just don't know how to do it. How do you control the food to that degree when you're dealing with so many kids and so many allergies?"

One big campus we checked out on-line had this to say:

Because of the number of meals served and the number of items used each day, along with food product changes by our food vendor, it is nearly impossible to identify and label every allergen in the food that is being served.  There is also the possibility that manufacturers of the commercial foods we use could change the formulation at any time, without notice.  Customers concerned with food allergies need to be aware of this risk.  [Happy Shiny School] cannot assume any liability for adverse reactions to food consumed, or items one may come in contact with while eating at any University Dining facility or catered event.

In other words, we can't guarantee you're not going to die...but pay up for the food service plan anyway.

I'm lost. It feels like the start of kindergarten all over again except, unlike kindergarten, they don't have to take my kid. They don't have to learn. They don't have to accommodate. If I had any doubts that my child is moving into "the real world", this experience clarified things for me. The power is all on their side.

One thing I have learned is that there's no point — and even potentially great harm — in doing a thorough exploration of food service before we have an admittance in hand. I'm going to have to put all my anxieties in a little box for another year and just hope we can make the best of things wherever he gets admitted. There's always the community college option or commuting to a local school, although I really wanted the freshman dorm experience for him specifically because he's been so sheltered.

And who knows. Perhaps this clinical trial will succeed beyond our wildest dreams and all his allergies will be magically gone by the end of the summer.

One thing's for sure - it would give him a damn good topic for a college essay.


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Are Our Food-Allergic Children Disabled?

My son and I had a rare moment of togetherness this week: filling out the forms for the College Boards. This is a joint project because, while it requires my credit card to pay the fees, there are a ton of profile questions they ask about college plans, priorities, career goals, etc.

It was the question about special needs/challenges/disabilities that stopped us cold:

Do you have a disability that requires special provisions from the educational institution? Mark the one choice that most closely describes your situation. Providing this information is entirely voluntary.

Huh. There was an option provided for "Other." Should we check it?

My son squirmed on the chair next to me, clearly uncomfortable. "Just let it go, Mom. Please just don't get into it."

Even at 17, my son is very sensitive to the idea of being different from others and asking for what he needs. But wouldn't it be a good idea to just tell all these schools up front that this student would have special requirements?

A second later, the other side of that coin hit me. Would the schools actually be prejudiced against him because of his special needs? Or, worse yet, would they see the words "food allergy" and assume the host of negative connotations that often go with it in many people's minds? Overprotected. Sheltered. Fussy. Controlling. Faking. Was the line about disclosure being "entirely voluntary" a warning?

We left it blank. There's just nothing positive that could come out of a label without further discussion, and the time for that discussion was after he had narrowed down his college list.

My son will continue to face this question on all of his applications, though. Should he try to explain the force food allergies have played in his life, perhaps even write it into his essay? Or are food allergies just a quirk in physiology, like my friend who had one leg shorter than the other and had to learn to compensate when she danced?

I have gone back and forth with this over the years. Shortly after a reaction, it can feel like the world is crashing down on us and food allergies are unbearable. Most of the time, though, they're a nuisance that we've learned to live with. The word "disabled" doesn't feel right to me because my son is quite able 99.99% of the time. However, in a world where food is social currency, he will not be as able. It's the mental and social toll that make him different, regardless of how hard we tried over the years for inclusion. He will simply never be able to eat with other people without planning in advance, and when he does eat, he will always have to consider the possibility of a reaction.

A few weeks back, I had a knock on my door. It was the wife of a local political candidate who wondered if I might be willing to put a sign in my lawn in support of her husband. I explained that I really needed to know a little more about his views before I could endorse him.

During her overview, she mentioned that a lot of the work he has been doing has been focused on rights for disabled children. (They have a daughter with autism.) I said "Wow, that's great! We have a child with a disability too, so I know how much that type of advocacy is needed."

"Really," she said. "What type of disability?"

"He has severe food allergies," I said.

She made an exclamation of...disgust? surprise? disbelieve? "God, how I WISH that was all we had to deal with!" she exclaimed.

O.k. I get it. Not visible. Only affecting us that pesky 0.01% of the time. Not the same as having a child who will never be able to marry or be on their own in the world without significant assistance. But also not nothing.

My son and I continued on with the College Board questions until we got to the page where they ask you to rank, in order, your criteria for college selection.

"I think we should put a #1 next to 'other'," I said to my son. "Food allergies are really the most important consideration."

"Oh, come on Mom!" he said. "Food allergies are maybe fourth on the list for me. What kind of a school it is and where it is and what kind of programs they have are all most important to me than stupid food allergies. Wherever I go, I know I'll be able to figure out a way to deal with it."

And you know what? He will. It may be easier at some schools, but it will be manageable at all, even if it means eating eggs cooked in an electric skillet every day.

Disabled or not, I know that food allergies have actually enabled him to deal with tough, life-threatening challenges. And isn't that ability to cope with the worst life can throw at us what we want for all our children?

I can't go so far as to say I'm thankful for food allergies. But I do think there's more able than dis overall.

College with Food Allergies...Maybe?

My son will turn 17 in a few weeks. That means we're entering the "College Chute." Where we live, 90+% of the kids go to college and the school is very directive and disciplined about getting them there, so junior-year college tours are strongly encouraged.

We did our first tour this weekend at Carthage College, a very nice little liberal arts school about an hour south of Milwaukee. The draw of Carthage is its proximity to Lake Michigan, which is...well, if you trip going to class, expect to have to change your wet clothes. It's only about 2500 students so we didn't know what to expect: would its small size make it less or more accommodating of students with special needs?

The good news is that we did find some awareness on campus. Our tour guide indicated she had a friend with gluten allergy and that the head of food services meets with kids with special dietary needs and then provides special food for them throughout the year. The challenge is that it isn't going to be carefree. My son will have to plan his meals in advance and notify the cafeteria. However, if they can truly prepare safe meals with just a little notice, that's a huge win and relief for us.

The school also has an alternate eating facility, made up of several food modules including a Baja Fresh. I am not familiar with this chain, but it does seem similar to a Chipotle, so we're hoping this might be an option for him as well.

Finally, the school is only 40 minutes from where we live, so it would be possible to drive groceries or frozen foods up. There are no cooking facilities (the dorms are VERY old and small), but kids are allowed to have cooking appliances in their rooms if they do not have a coil. That means microwaves, hot pots and even electric frying pans are o.k. As my husband and I have discovered in countless hotel rooms over the years, you can do a LOT with a crock pot and an electric fry pan. (Heck, we even used an iron once in a pinch.)

So, all in all, not much to bitch about this weekend. Well...a few things (after all, it is the point of the blog). The hospital is farther than I'd like, there's no on-site nurse most of the time and their response to emergencies is "call 911"...but I think that's probably going to be par for the course wherever we look.

I looked in vain through the folder for the pamphlet entitled "Parent Dorm Options", but there was only stuff for him in there. The more I think about it, the smarter I think our high school is to push these early visits. He's fine with the concept of leaving home, but God knows I need some time to process it all!