October 5, 2009

Sending My Food Allergic Child Off To College

I am grateful beyond words to the Head Chef , Assistant Chefs among others in the food service area, their Director of Food Service, the Diner Crew, and the Pizzeria Crew at The State University that my son is attending as a freshman this year.

That I am even able to share our experience in sending a food allergic child away to live at college, and eat safely, still amazes me, as I never thought it would be possible. You are a warm and compassionate group and a beacon of light to others in our position! You are making our son's college experience, including living in the dorm, and eating out on campus, a reality!

My son has asthma and severe and life threatening food allergies (which increases risk of anaphylaxis due to the underlying asthma).

I couldn't imagine him kissing his first girlfriend, no less going off to college safely!

When we began his college search, we initially narrowed his choices down according to the major he was interested in, illustration and animation.
After that, we set a limit of a 2 -3 hour maximum drive due to his overriding health concerns.

He finally decided on a State University, which is just a 40-minute drive from our home. A beautiful, old college, with majestic buildings, set on a green campus, and best of all, with a group of Food Service Managers and Chefs who have been accommodating and wonderful.

Our hope was for our son to be able to live on campus, in order for him to have the 'full college experience'. (His two older, non-allergic sisters - his one sister has the gluten allergy, but did not develop this until her freshman year in college - as it doesn't impair her breathing or put her at risk for anaphylaxis, management has been less harrowing, we weren’t leaving her on her own miles away to face a possible life and death situation if she inadvertently imbibed gluten. She is celiac, not wheat allergic! A very important difference! We discovered her gluten intolerance after she experienced a huge and sudden weight loss while away during the first three months of her freshman year- both attend a university that necessitates a plane ride!)

Upon receipt of our sons's acceptance to the University, my first phone call was to the Head Chef of Food Services. I explained to him the severity and risk of my son’s food allergies, how even a slight cross-contamination could cause a serious reaction. I asked him what I thought was the impossible, ‘could my son safely eat and live on campus?’ Without hesitation, Chef Ken assured me that he had taken care of other students with food allergies, including one last year so allergic, that he had kept for this student his own pans, which he had purchased, labeled, and kept in his office for this student. I could not believe my ears! After years of resistance from our school district, and struggling to explain and increase awareness of the severity of food allergies from K – 12, here was a man who instantly made me feel as though cooking for Max, would be a pleasure, not an imposition! He arranged for us to meet to discuss the logistics of how Max would be able to live on campus and eat safely at their cafeteria…. something he had never been able to do while in attendance at our public schools!

At this initial meeting, the Director of Food Services as well as the Assistant Director was in attendance. All three assured me, that they had other college students with severe food allergies, and that they would be able to accommodate my son.

Chef Ken went on to share how he had a student who was highly allergic to gluten. He shared how important it would be for Max to advocate for himself by becoming friends with the Chef and Assistant Chef in the cafeteria that he would be eating out of. He told him how this other student was welcomed to walk around in the back of the cafeteria, and would pick up a pepper and an onion, and ask if the Chef could defrost a chicken breast and please make him a stir-fry for dinner that night. I couldn’t believe my ears! We ended the meeting with Chef Ken giving us a walking tour of the campus eateries. It was still summer, so it would not be possible for my son to go through their pantries and freezers to read food ingredients yet, but we could still get a feel for what would be available on campus as a choice in eating options for my son.

Now, I want to impress that through the years my son has made a great circle of friends, in fact, among them another girl with a peanut allergy and a best friend who’s mom has the nut and other allergies. These friends were used to him reading every label and were beyond considerate at parties and such. Additionally, my son began dating a girl his junior year of high school, who from day one gave up her nuts to be with him. Her mom welcomed him to dig through their freezer for safe foods, and would take him shopping to the grocery store with them so that he could grab food to keep at their house that was safe to eat (his girlfriend is a vegetarian, so we as well always kept food for her on hand as well…. ironically, Max is very allergic to Soy – and she has a vegetarian lived on soy so mutual adjustments took place. One of them was a toothbrush and a bottle of mouthwash at our home for her to use after eating veggie burgers containing soy, which I kept in our freezer for her).

Through this girlfriend who would cook for him, or with him, safe meals (as well as her mom, who went above and beyond cooking for him), I was able to let him ‘grow up’ and take more responsibility for what he safely ate outside of our home.

Raising a child with severe and life threatening food allergies is a nerve-wracking experience! From his first allergic reaction as a baby from that initial peanut butter and jelly sandwich which sent him unrecognizable – he looked like a swollen red balloon, streaming so much mucus from his nose and mouth, that my older daughter used a beach towel to mop up what flowed out of him as I raced him to the emergency room at just 14 months old - through sending him away to college, his experience has been a path of maturation. A consistency in educating and having him take responsibility starting off with the very basics of teaching him not to eat any food that didn’t come from home, and Murphy’s Law, if you don’t have your emergency medications, you will need them! My son has had it drilled into him forever not to leave the house without those life-saving medications on hand.

So, as Chef Ken gave us the walking tour, he pointed out the pizzeria, the two cafeterias, the coffee shoppe (ala the hip kind where they serve pastries and sandwiches on croissants), and finally their own ‘Jersey diner’, the Red Hawk Diner. Chef Ken cautioned that a student who was allergic to onions had ordered an omelet there. This student was served their omelet with onions on top, they sent it back and asked if they could have an omelet without onions, but did not state the reason being that they were allergic. Unfortunately, the chef there not knowing, simply scraped the onions off, and the same omelet went back to the student. That student had a bad reaction. Chef Ken told my son, you gotta be clear man, that you are allergic, and told him that it was a huge hot spot for everyone and busy as heck the first few weeks, so to give the diner time to settle down before eating there.

Chef Ken was so welcoming and warm as he walked us around pointing out all of the different spots to eat. He did add that the diner was one of the few places open at 2:00 a.m., and that after a few hours of video games, with your fingers falling off, that it was pretty common to look at your buddies and say, hey, I’m hungry, lets head to the diner!

We went home, and I had a lot to think about, as I am sure my son did. First of all I had been researching the college experience on the food allergy network for my son, and offering him tips and sending him advice that other teens had given out who had safely gone off to college with food allergies. Their advice: talk to the university’s chef! Their second piece of advice, stock up on safe snack foods and create a ‘snack kit’. This was a great tidbit of advice from a college student. She shared that inevitably you will be out somewhere, everyone will get the munchies, and you may not always be able to eat what is available! So have a drink and a bag of snacks with you in your backpack, always, just like you have your medications on hand.

My son and I discussed frequently during the months leading up to his high school graduation, continuing throughout the summer, the feasibility of his being able to live on campus due to the severity of his food allergies. He would have been okay with commuting, but we as his parents, hoped that he could live on campus. I had read so many comments from students at college through the Food and Allergy Network, that I knew it was possible, yet I did not know of any parents who had already sent their food allergic kids off to college. It was a huge unknown for me. I also had a concern about Max driving back and forth to college during the winter on icy and snow covered roads. I discussed it with my sons’ allergist, who couldn’t make that decision for us. Our advice was, discuss it with the college.

My son and I attended the student/parent orientation in August. (My husband attended the campus tour) The parents were separated from the kids, and as an outside food server catered the event, both My son and I brown-bagged it (I developed food allergies, much to my surprise, a few years ago. This has given me the first hand knowledge of how quickly your throat can close off after eating an offending food. It also has given me first hand knowledge of how you can feel embarrassed to say anything, because unfortunately most people who haven’t a family member or close friend with a food allergy think we are hyper complainers, exaggerators or hypochondriacs. This stems from a lack of education. I feel that all current college students enrolled as teaching majors should be required to take allergy education courses as it is now a routine part of being a teacher).

I was surprised at how many kids heading off to college had health related issues. I have always felt that God has blessed my son’s path and protected him on this allergy journey. (When we moved to this neighborhood 14 years ago, God had us across the street from a family who’s son would not only become his best friend, but who’s mom has the nut allergy too! That was the first ‘safe’ house Max could play at and sleep over at).

At my table, one mom’s son had lungs that collapsed for no reason; another’s had terrible acid reflux issues; another had a daughter with irritable bowel, and on and on. I felt kinda lucky that Max just had asthma and food allergies!

My next phone call was to the disability office to request a private room due to his food allergies, and air-conditioning would be helpful for his asthma (he’s taken daily maintenance medications since he was a baby, his is chronic). My son's food allergies include tree nuts, peanuts, legumes (all beans) Soy, shellfish and salmon (his doctor advises not to take the risk, no fish). Max also recently did test positive for some other foods (apples and wheat) as allergens, yet they do not bother him when he eats them. His allergist said that our bodies can create their own immune response, so the true way to know if you are allergic, is if you get sick by eating the offending food. He is off the chart allergic to peanuts, soy and walnuts. (His allergist reminds him to carry his epi-pen always, and get to an emergency room if he has eaten any allergen.)

When I spoke to the woman in the disability office (which I had not thought to do until I had spoken with housing to ask about the possibility of pairing him up with another peanut allergic student. I was concerned that if a peanut butter eating roommate lived on the stuff, it would create an unsafe living situation). The housing office advised me to contact the disability office; and the disability office was extremely accommodating! My son ended up in a private room, which included his own bedroom, he would share one bathroom with a suite mate who’s own bedroom was connected on the other side. This arrangement has been terrific! (The other student who my son shares the ‘suite’ with has his own disability.) Thus the private room for Max. (This costs a bit more, but the student can keep that living arrangement throughout the entire 4 years of college, which is priceless for my peace of mind and my students’ health and safety!)

Our next meeting with Chef Ken occurred just a few days before freshman move in day, as the food had finally arrived in the kitchens and eateries on campus.

Once again Chef Ken greeted us with his warm and unassuming manner, a genuinely nice man! He started this time by bringing us into the smaller (by far) cafeteria which was located right outside of my son’s dorm building (it fed 500 students a day and had one Head Chef and one Assistant Chef – this opposed to the other huge cafeteria on the other side of the ‘Quad’, which accommodated the 1500 freshman living in the high-rise tower, as well as the upper classmen living on campus and commuter students. This cafeteria has 9 chefs at any given time, and is always busy, busy, and busy! )

After our first walk through campus with Chef Ken, when he shared about the onion omelet at the diner, I decided in addition to the allergists report and the pulmonologists report and their letters to the University’s food service and disability office, that it would be wise to make up our own allergy list for the food service people who would be cooking for our son.

We typed up a list of the specific foods that he was allergic to. Included on this list, was also how important it was that separate utensils and prep pans and areas were, as the risk of cross contamination could create serious illness or even a fatal reaction. Also, we put on the header that he had underlying asthma, which can increase the severity of an allergic reaction and anaphylactic shock. In the upper corner, we copied his student I.D. that gave a visual picture of who he was and what he looked like. These lists my son made a dozen and a half copies of and had laminated. When we met with Chef Ken to tour the eateries and the cafeteria, he was very appreciative and handed these allergen sheets out to the Head Chefs and Food Service Managers accordingly to post in their facility. Chef Ken also handed these out and went over them thoroughly at a manager’s meeting.

The first and most important stop that we made, was the cafeteria by his dorm. Immediately Ken introduced us to their head Chef. God blessed us with another warm wonder, on top of Ken! Another welcoming and warm person, he shook his hand, and his smile made me want to cry. Nothing seemed to be an imposition! Chef Ken told him that my son would be checking out the ingredients in the pantry and looking to see what foods would be safe to eat. He also gave his cafeteria's Head Chef the list and explained how important it was that my son was welcome to come back into the kitchen, before every meal, to see what he was cooking, and to see what he could safely eat. It was decided that My son would never eat out of the open self-serve buffet, as the risk of cross contamination would be too high. We were also introduced to the Assistant Chef, who was also beyond wonderful. He said that he would set up a separate allergy free prep station just for him!

As we went through the different foods, it became clear that daily my son would need to check on what he ate. I felt a bit overwhelmed, but Chef Ken had my son under his ‘wing’ and was just being so relaxed, as if every single day he went out of his way like this that I too relaxed a bit. Again, Chef Ken expressed how important it would be for him to come on into the cafeteria kitchen, and to make friends with the cafeteria chef and assistant chef, and ask ahead (like the other highly allergic student did) allowing time for them to cook him up a special order safe meal. (It turns out that the Assistant Chef even has gone as far as to make fancy decorations out of the fruit salads he serves My son – he used to work at a 4-star hotel!)

Our next stop? The pizzeria. I know from our own dining experience, that most (not all) pizzerias are accommodating and safe. My son was talking to the head chef there, asking what type of dough he used, as he read the ingredients. He also asked to see how the sauce was made (homemade), so the chef showed him the cans, they read the labels together. He asked what type of oil was used, and again was shown. They went over the cheese. Chef Ken handed Pizza Chef the allergy list with his photo. It was deemed that pizza was safe, but my son, being a guy, was interested in a little protein on top of his pizza, and wanted to know if the chicken parm pizza would be okay, so we headed off to the upstairs freezer to do more ingredient reading.

As we left the pizzeria, the Chef there gave Chef Ken a personal pan pizza, fresh from the oven, Ken warmly thanked him, took a slice, and offered my son a slice, saying it really was the best pizza! He said thanks, and accepted the slice, and began to eat his as we passed another food university employee, whom Ken then generously handed the remaining 2/3rds of the pie to. As we headed upstairs to the freezers, with My son and Ken taking the lead, the pizzeria chef came running up after us, frantically shouting, there was ‘soy in the pizza, soy in the pizza…I use a different oil in the pan, soy in the pizza’. My heart stopped. My son had asked about every ingredient used, had checked them all, but did not know to ask if a different oil was used to grease the pan.

My son responded by saying, ‘oh, a little soy is okay’ (as his girlfriend, the vegetarian eats soy, and he kisses her, he felt that was a good rationale). I said to him, ‘ a little soy if you eat it is not okay. You are highly allergic to soy and have been in the hospital after eating it’. I raced downstairs with the chef to see what the soy ingredient was. It turned out to be soybean oil. On the allergen sheet, which initially he had just skimmed over, the word soy jumped out at him, he didn’t read that soybean oil and soy lecithin was safe. I was so relieved, and the pizza chef who was visibly shaken, said he was never so scared. He was so glad that soybean oil was safe, and I am sure that the next time he shares ingredients, he will most likely remember to include what type of oil he uses on the pans! Ken patted him on the back, and my son said to me, ‘see, it’s fine’.

We then walked over to the campus Diner. Again, My son went inside with Ken to meet the chef there, and check out ingredients and give them the allergen alert sheet, but I remained out front. I sobbed for about five minutes or so, pulled myself together, and just silently thanked God that it was a false alarm. I realized the gravity and implications of sending him to live and eat at college. I wrestled with and prayed about my decision over the days that followed.

When My son and Chef Ken came out, from the look on my face, Ken knew I had been crying. His tone changed, he became more serious. He asked if I was okay. I said yes, then I turned to my eighteen year old son, and said to him, ‘You are allergic to soy, if you eat anything that might be an allergen; you do not brush it off. You give yourself your epi-pen, and you get to the emergency room. Remember Dr. Atlas’s (my sons pulmonologist, the head of pediatric pulmonlolgy at a major hospital in our area, he has been treating My son since he was three or so years old, and My son completely trusts Dr. Atlas, he is his confidante) colleagues’ son? He was at a concert, asked ingredients, was told they were safe (in nachos with cheese), and they were fried in peanut oil, and he died? You can’t fool around if you eat the wrong food, I turned around, frustrated and of course emotional and scared for his life.

Chef Ken said to him, she’s right man. Listen, let’s continue our walk, but you’re not gonna die here (or something like that). We went back across campus, and re-visited everywhere we went, with Chef Ken reminding the different food managers and Chef’s that his buddy (my son) was welcome in the kitchen, to read every label and see how food is cooked and asked questions, cause we weren’t’ going to serve him food that could kill him. The tone was still warm yet very serious now.

We learned two very valuable lessons that day. It was for me, a God-at Work moment. If that near miss hadn’t occurred, I don’t think the serious nature of my son's food allergy would have been fully appreciated. It scared the pizza chef, Ken, and me (as for My son, he didn’t say), and this turned out to be a blessing in disguise. This was another reminder to my son , to take his food allergy seriously, because his life did depend on it.

Although My son was very interested in eating baked goods, it became a flat out no (his girlfriend volunteered to bake every week for him, and so far has!)

Although My son was also very interested in eating at the coffee shoppe, the sandwiches and the baked goods, were deemed unsafe, this also became a flat out no.

There was no way to control the prep, foods were sent over from other places. Chef Ken, (Thank you God for Chef Ken) said to him, ‘man, if you are hot to eat here with a chick, just grab a sealed juice man! (though right now my son's heart belongs to his girlfriend, he did chuckle)

We also realized that the large cafeteria would be far too hard to eat in safely as well. Again, at first he bucked at that, as he had a friend from the same town attending college living in the freshman tower by the huge cafeteria. I just said, honey, it is your disability. Be grateful you can eat at your cafeteria, the diner, and the pizzeria! (There is also a 7-ll type store right on campus, where he purchases milk and cereal for late night dorm snacks as well as other sealed and safely labeled munchies).

It has been a little over a month since my son began college, and here I am moved to tears. When we moved him in that first day, I was anxious for my husband to meet the wonderful, gracious and accommodating Chef's who would make it a reality for our son to live and eat on campus....to have that 'typical college experience' (My husband has a demanding job and was unable to get away during the times that we met over the summer). It was too hectic on move-in day, so rather, we visited with our younger kids a couple of weeks later on a beautiful Saturday afternoon. When my husband met the Head Chef at the cafeteria, he was floored at his warmth and compassion and at how it didn’t seem to be an imposition at all to feed our son!

As my son has a girlfriend at home, he has been coming home on the weekends, however, this weekend she is away with her family so he may just stay on campus. He has been making friends, who are impressed by his single room and his cafeteria with the made to order meals! He has been eating safely, including at the campus diner and at the pizzeria!

In the beginning, we of course stocked him up on snack foods and stocked up his mini fridge and freezer. Then at the end of the weekend we would send him back with leftovers. Well, this weekend, he didn’t take back any food. He told me he was throwing a lot out, and that cereal and milk and juice and cookies were enough!

I couldn’t have imagined my son living away from home and being able to safely eat his meals anywhere but home. Baby steps. From the peanut-free table in elementary school, to the regular table in middle school, to hanging out with friends at high school parties, to eating at the home of his high school girlfriend more than our own home at times, to living away and eating at college! Who would have thought it possible?

I am so grateful to all involved in helping us; from the office of disabilities, to housing, to the food services managers at the university for giving My son a safe-haven and making the college experience, including living on campus, possible.

What I thought would be impossible, is possible. Did I tell you that when my husband and I and the little kids went to visit campus, we even had a snack at the campus diner? We told the Chef that our eleven-year-old son had nut and egg allergies. No problem. He sat there, grinning ear to ear, eating a huge dish of ice cream, his first ever anywhere other than from our freezer!

I hope my story will help to give assurance, guidance, and hope to all of the moms out there in our position. When you are looking at colleges for your son or daughter, it is possible. It takes a little legwork on our part, but wow, the hugest surprise for us was how big the effort, yet made to seem like ‘no big deal’ was on the part of the University!!

The impossible, became possible! Take heart, your son or daughter can be packed off to college, like any other college kid, just with a little extra care.

You've given them their allergy basics wings, now it's the time for them to fly on their own!!! And they CAN do it!
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