When my son, Morgan, now 19, was formally diagnosed with peanut allergies at 18 months old, one of my first thoughts was: How will he ever go to college? If you’re a food allergy parent, you probably understand anxiety about planning for the future. College is that great frontier where students eat all their meals in cafeterias and sleep in dorm rooms with some food-allergen-eating roommate. Worst of all, we can’t be there if something goes wrong.
Since his initial diagnosis, Morgan has added many more, while experiencing several allergic reactions. He has life-threatening food allergies to peanuts, tree nuts, sesame, fish and shellfish along with eczema, environmental allergies (furry pets and pollen) and mild asthma. This combination made living in a dorm a distant hope. Still, we wanted to be open to all possibilities.
In the junior year of high school, most students begin the process of searching for a college to fit their academic needs and dreams. A teen with food allergies has an important additional need: Finding a food allergy aware college. While deciding where to apply, we found those two factors to be equally weighted.
Online resources for picking a college:
U.S. Colleges Directory: Comparing Food Allergy & Gluten-Free Policies
Off to College with Allergies, Celiac
First, start by getting more information about the colleges on your child’s list by visiting the school’s website. Owing to the jump in the number of students coming into college with special food needs – celiac, vegan, vegetarian, allergies, intolerances, Crohn’s and colitis – many colleges now offer special menus and apps to track ingredients. Some have a dietitian on staff to assist with safe dining options. Dig deep into all the available information.
Is your child ready to leave home?
Even among teens without food allergies, there are plenty who are not ready to be hundreds or thousands of miles away from home. Others are more than ready. In any case, at age 18, food-allergic students, like the rest of the college-bound cohort, are considered legal adults. So, Mom and Dad, that means you won’t be negotiating accommodations with the Disability Services Office (DSO) of the college – your child will be!
Before leaving home, we agreed Morgan needed to learn and be willing to: ALWAYS carry his epinephrine auto-injectors; order food at a restaurant; grocery shop and cook for himself; properly react to an allergic reaction or anaphylaxis; train his friends about allergic reactions and administering his epinephrine auto-injector; be comfortable speaking with a doctor; remember to take all his medications for pollen allergies and asthma; advocate for himself with teachers, the Disability Services Office, chefs and employers.
This list may seem long; but that’s why it’s never too early to begin getting your child ready for the world on their own – and you have 18 years to work on it.
Personally visit the colleges and universities
These visits are vital. Visiting in person gives you the true feeling of a school beyond the marketing message of its website. And asking the right questions while you’re on campus is the key to a successful fact-finding mission.
Start by evaluating you and your child’s own needs for college accommodations: What is your teen’s ideal living situation for her or his college years? Being at home, in a dorm or in an apartment? What is your child’s ideal college academically? Can these two criteria be met by one college?
Remember, it never hurts to ask for exactly what you want. If you want a chef to specially prepare your child’s meals, ask if that can be done. Does your child want to live in an apartment instead of the required freshman dorm? Ask for that.
Here’s a list of questions on food allergies and asthma that are useful when visiting a college:
• Are ingredients listed on all foods served in the cafeteria?
• Is there a chef on site to take special orders?
• Are the cafeteria workers trained on food cross-contact?
• How many of your child’s allergens are regularly served?
• Can I speak with a dining manager about my child’s needs?
• How old are the dorm buildings and cafeteria facilities?
• Has there been any water damage or flooding in the past?
• Are the dorms air-conditioned? (If not, what documentation will be necessary to submit for a medical necessity to live in air-conditioning?)
• Are pets (such as dogs and cats) allowed in the dorms?
• Can the resident adviser be trained on the administration of an epinephrine auto-injector?
• Can roommates be selected to ensure no food allergens are in the dorm room?
• How is a 911 call handled on campus?
• Is food allowed in classrooms and lecture halls?
• Is smoking allowed on campus?
• What paperwork is necessary to complete for the Disability Services Office?
There are dozens more questions you could ask, but the idea is to form your own list and be as thorough as possible. Speaking directly to the person in charge while visiting the campus is one way to make sure you get the answers you need. Set up personal meetings with each department (housing, dining, academic major department) when you visit the campus, and pick up business cards so you can follow up later if necessary.
It can be complicated to coordinate the timing of completing paperwork for the Disability Services Office when your child has yet to apply and be admitted to a college. We didn’t speak with the DSO directly on campus visits, nor did we fill out paperwork on the spot, because we didn’t want to flag Morgan prior to him being admitted. But most colleges have the DSO information on their website, along with deadlines for paperwork.
The 504 Plan from K-12 schools doesn’t follow your child to college. Every college we visited stated that accommodations are available in college, however there is a whole new set of paperwork to complete, and documentation of the medical condition will be necessary for the Disability Services Office to authorize the accommodation. Many DSO’s paperwork is not yet up to date to include food allergy accommodations. They generally deal with learning accommodations, so some patience and education of staff may be necessary on your part along the way.
You and your child will need to meet with the Disability Services Office at their college of choice and discuss what accommodations are needed. Supporting documentation from your medical doctor, such as letters, clinical notes, asthma breathing tests and/or skin prick and blood tests will need to be included. This documentation needs to be dated within the previous six months to a year. It can take weeks for a doctor’s office to gather all this information, and another few weeks for the DSO to meet and decide on accommodations. Plan for this in your timing prior to the first day of school.
I suggest meeting with the Housing office also. You may need to troubleshoot various scenarios with Housing officials should your child’s requested accommodations not be granted. Make sure you have a Plan B or even Plan C to deal with unexpected barriers. For example: “If I can’t get a roommate who will keep my allergens out of our dorm room, then I need to have a dorm room by myself.”
Lastly, you and your child will want to meet with Dining Services. In this meeting, you may want to include not only the head chef and dietitian, but also the assistant chefs and other cafeteria workers that will be serving food to your child. This is an opportunity for your child to meet his/her contacts in the dorm cafeteria (and to get cellphone numbers if the chefs are willing!), to go through food options when the menu doesn’t provide for a safe meal, and to review staff training for administering an epinephrine auto-injector.
Before they head to college
Your child will receive their roommate assignment over the summer, and many students will converse over Facebook, Skype or in person.
Morgan and his roommate conversed online over the summer, and met in person a few weeks before school started. Morgan came home and said he never mentioned food allergies! I almost wanted to step in and start a conversation about how important it is for his roommate to be aware of his food allergies. Instead, I decided to step back and let him manage it. Morgan did mention his food allergies in a text message later on. Thankfully, his new roommate agreed to keep Morgan’s allergens out of their room.
The first day of school
Dropping your child off at college is difficult for most parents and some students, too. The parent orientation we attended was filled with sessions with the basic theme of “How to let go of your child.” They could have easily had the theme song from Frozen playing! For the parents of a food allergic child, “letting go” involves a whole different level of preparation and trust.
But remember that there are so many things students learn in college in addition to academics. By properly managing food allergies and asthma, your child has the opportunity to enjoy the rest of school. Good preparation for college will yield successful results for you and your college-bound child.
Check in with your child over the first few weeks of school to ensure that the accommodations granted are being followed. If not, your child has an opportunity to practice some self-advocacy. Inquire if your son or daughter has trained friends about the symptoms of an allergic reaction and/or an asthma episode. Find out if they have trained others to administer their epinephrine auto-injector should anaphylaxis occur. There isn’t a school nurse at college who is responsible for this training.
To date, Morgan has had no problems finding safe food, and has never had even the slightest allergic reaction or asthma issue. He loves college and all the opportunities. He is always aware of what food is around him, yet that hasn’t stopped him from partaking in a full college life. For all of us, that’s a major victory.
Nicole Smith is a writer at advocate based in Colorado. See more of her work at AllergicChild.com.