DAYS before school started, while other families were soaking up the last bit of summer, my daughter, my husband and I sat around a large conference table with no fewer than 15 other people. It looked like a board meeting for a Fortune 500 company, but in fact it was 504 Plan meeting for our daughter’s entry into a new school and the fifth grade. Gone was the intimate environment of the elementary years.
Everyone from the cooking teacher to the school nurse was there to discuss the transition to middle school for our daughter Jillienne, who has severe allergies to dairy, nuts, sesame and shellfish.
From the number of people involved, to anticipating the rotation from class to class and teacher to teacher, life as we’d known it was changing before our eyes. We wanted Jillienne to look forward to the big move, but this new environment clearly was going to require additional organization and forethought – so that she would end up with an effective accommodations plan.
Preparing for the Transition
Whether middle school or high school, when a child with food allergy or asthma enters a new stage in their academic career, it is as much a big adjustment for the parents as it is for the child.
Parents need to shift from working to provide a protected elementary school environment, to incrementally teaching their child the life skills she will need upon graduation from high school. It is helpful to work with the school to break these skills down into small, developmentally appropriate steps.
These two big school transitions are a process; not everything needs to be decided in one meeting, and you can request a meeting with the school at any time.
Typically, there is 504 Plan meeting in the spring – such a plan is outlined under Section 504 of the Rehabilitation Act, which sets out factors that allow food allergy to be considered a disability to be accommodated. The purpose of this spring sit-down is to list accommodations that are necessary for the child to safely and fully participate at school, not to tit the child into what the school already provides.
In the spring, some information – such as teacher and class placement – may not yet be available. That’s why it’s wise to have a second meeting in the days before school starts, which should involve all teachers who will have direct responsibility for your child at any point in the year.
For the transition to middle school, I recommend having your child at the meeting at least for the introductions. This has two benefits: it allows the staff members to get acquainted with your child and the 504 Plan, and it gives your child an opportunity to become more comfortable advocating.
After the introduction stage, your child may leave, depending on the content of the meeting and her maturity level. For high school-aged students, I think it is important that they attend the full meeting with increased participation as they get older.
Preparing Your Student
If your child does not already self-carry his epinephrine auto-injector, now is the perfect time to begin this habit. With all the movement between classes in middle school, it is safest for the student to have his epinephrine auto-injector with him.
By high school, this should be a deeply ingrained habit, as he will be doing many activities independently. (Keep in mind that you may need your physician to sign a form permitting your child to self-carry or self-inject.) The epinephrine auto-injector should not be kept in a locker, but should be with the child at all times. An additional device may be kept at the nurse’s office.
If your child will be entering a new school the following fall, make a plan to visit during the summer. This allows your child to become acclimated to the new setting and familiar with key staff members before school begins.
Topics to Address in 504
and Other Meetings
While it’s impossible to anticipate every situation that might arise in a school year, following are some considerations to keep in mind. Some concerns can be addressed later in the year, as an event or class approaches. That gives you and your child time to get to know the staff and other students and to better assess needs.
Point Person: Who can my child go to if there is a concern or for support? Ideally a person your student will see over multiple years such as a physical education teacher, guidance counselor, or administrator.
Nursing Staff: Is there a full-time nurse? Where is the nurse’s office? If there is not a full-time nurse, who would be in charge of epinephrine administration?
Staff Training/Emergency Protocol: Who is trained and what is the training? Does training address emotional needs as well as safety needs? Who is authorized to administer epinephrine? Even if your child is mature enough to self-administer, it is important to designate an adult in case the child becomes incapacitated.
Meals: If your child will be eating food provided by the school, meet with the company that runs the cafeteria. What food allergy training does the kitchen staff get? What foods will your child be offered and where does this food come from? What are the ingredients? How often do staff check ingredients? Does the food vendor notify the cafeteria provider of ingredient changes?
Lunchroom: Where will my child sit during lunch? Who will be responsible for cleaning the table and chairs before lunch? Who can my child go to if there is an issue? Who will be present to administer epinephrine, if needed?
Substitute Teachers: Are substitutes in any of my child’s classes trained about food allergies and emergency protocols? If not, what is the plan?
Classroom: ls food ever eaten in the classroom? How will we ensure that the classroom is kept free of my child’s allergens (including supplies)?
Lockers: Are student lockers shared? Can my child have his own surrounded by the fewest people (e.g. an end locker)?
Physical Education: Is there an activity that prevents my child from carrying her auto-injector (e.g. swimming)? During such activities, where will the device be kept and who is responsible for it?
Art: Are the art supplies free of my child’s allergens?
Cooking Class: What accommodations are necessary to allow my child to fully participate? Can allergen-free recipes be used? If my child does not Want to participate, what alternatives are there?
Science: Are food items/allergens used in experiments or science projects? How will this be addressed?
Foreign Language Class: Is there any food sharing? How will we ensure that my child can fully and safely participate?
School Events: What is the plan to ensure my child’s full participation in important events including field day, honor society breakfasts, prom, etc.? Who will be there to administer epinephrine if it is needed?
Transportation: This issue needs to include events and field trips. Who will be there to administer epinephrine? Will there be food at the event/trip? Will food be allowed on the bus? What is the plan to ensure my child will be able to safely participate?
Sports Teams, Band, Drama and Other Extracurricular: Where will the epinephrine auto-injector be kept, if not with my child? Who will be responsible for it? Are activity leaders trained? Are there times when students will be sharing food or eating? What is the plan?
Field Trips: What trips are planned? What do we need to consider for these? Does my child need to bring his own food? Will the school choose restaurants or dining services that are safe for my child?
After School: Who is in the building to supervise the students? Do they know my child has a food allergy? Are they trained to administer?
Other: Ask staff to help predict other potential issues.
Middle School’s Emotional Impact
Your child most likely had one or two teachers in the last year of primary school. In middle school, she will have multiple teachers, multiple rooms and new classmates. This will probably also be the first time your child will be required to move through the building without supervision.
Peers at this stage are going to play a huge role in your child’s development. She will be sitting with her peers at lunch, and they will be with her on field trips, at PTA events and other activities that you may have chaperoned in the past. But your child may feel too old to have you coming along now or it may not be appropriate.
All of these new freedoms and responsibilities may cause anxiety, so it is helpful to put the following safety nets in place.
- Ask that your child have a “buddy” in class and at lunch.
- Encourage relationships between your child and considerate friends. Besides speaking to your child, check in with the school staff to see if they notice classmates who might be good friends for your child.
- Help your child to educate new friends about food allergies, the importance of handwashing and why your child needs to carry an epinephrine auto-injector. Consider training your child’s friends to use an auto-injector if they agree to and their parents are comfortable with the idea. They should also know to locate an adult immediately if there appears to be a reaction and to call 911.
- Come up with a code or signal between the child and the teachers to indicate that an issue appears to be arising that needs their attention. Some examples are a clear “nod,” a thumbs down, or writing a post-it note and bringing it to the teacher.
- Facilitate meetings between your child and the adult leader of activities she will take part in. Create a plan for your child’s full and safe participation.
- Have a plan for after-school activities in case your child feels unsafe. For example, a cellphone to call to be picked up.
- Even with such steps, do be alert to signs the transition could be causing your child a high level of anxiety. If so, expert counseling can be extremely beneficial to help your child develop coping strategies.
High School’s Emotional Impact
As your child with food allergies enters high school, she will have even greater responsibility and expectations, but will still need help getting to the point of full independence. This requires adult support at home, in school, and elsewhere.
Adolescents and young adults are at the highest risk of fatal anaphylaxis and often participate in risk-taking behaviors. It is imperative that schools and families do not drop accommodations during this critical point of development.
Teens are dealing with added peer pressure, and may also be dating and going to parties Where there are alcohol and drugs. These situations require additional conversations and openness between you and your teen. Some situations, such as dating, require your teen to learn more sophisticated communication skills. Help your child to develop a personal script for these situations. It can be helpful for your child to reach out to other adults for advice, too.
This may be a counselor, or through finding a mentor, attending a teen food allergy conference, or joining an online support group.
Gina Mennett Lee, M.Ed., is a food allergy educator and consultant. Visit her website at Food Allergy Consulting.