Here we Go!
A 504 Plan, what is it, why do I need it, and how do I create it?
FARE defines a 504 plan "Section 504 is part of the Rehabilitation Act of 1973 that was designed to protect the rights of individuals with physical or mental impairments in programs that receive federal assistance. This includes public or private schools that receive federal funding. Parents of children with food allergies may refer to a “504 Plan” as the accommodation plan that allows safe and inclusive access to activities at school."
The importance of this document is to help provide your child with equal and safe treatment in the classroom. Many students have 504's for different reasons, learning disabilities or behavior disorders, and thankfully we have access as food allergy patients! Possibly the most important part, highlights the severity and seriousness of their allergy to those caring for your child through out the school day. Creating this plan adds a level of legal responsibility to the situation that boosts the likelihood of safety for your child. It is your best tool of advocating for them from the very beginning. In our 504 development meeting, my daughters principal, counselor, nurse, teacher, and bus driver were all in attendance at one meeting or another! I brought the practice AuviQ's and they all learned how to use them, as well as any staff member that may be caring for her throughout the day. Her 504 is printed and in a folder in her classroom, any substitute teacher is aware of it and reads through it before taking over for the class. Any staff or admin member that cares for Ansleigh throughout the week has a copy of it and knows the document well, not just her primary teacher.
I'm writing about this now because depending on your school, it's great to get the ball rolling ahead of time, especially if your child is starting a new school. Go to their school and just mention you'd like to set up a meeting with the principal to get the process started of a 504 for your food allergic child. It may just initially be making sure they're aware your child is coming and you'll further develop the actual plan over the summer or closer to school starting, but you want to be on their radar!
I'm going to just run a bulleted list of what we have in our daughters' plan, to help get ideas rolling for you!
- Carrying Epinephrine Because my daughter is in Kindergarten, I'm not yet trusting her to keep her AuviQ on her at all times. Personal decision. (We plan to reassess in 2nd/3rd grade) That being said, I was not comfortable with her AuviQ being locked up in the nurses station. When asked why, I simply asked if that nurse was consistently at her desk and able to get the epinephrine and run to my child at a moments notice. Clearly the answer was no, there are a few hundred students she helps as well, meetings she's in, etc. Our school does not have stock epinephrine available similar to an AED, so I wanted her personal set with her at all times. Our 504 states that whoever as her under their care, has the AuviQ's. We provided a satchel that the staff can wear around their body. It follows her everywhere, classroom to lunch to PE to music on field trips...EVERYWHERE. And I love it.
- Food in the Classroom The School chose to have her classroom be nut free, they've asked no one sends in nuts/nut products for lunches or snacks. This is one I could give or take on. She is allergic to peanut, tree nut (pecan/walnut) and dairy. I feel by being nut free there is a false sense of safety, given her most violent anaphylactic reaction was actually to dairy. Like I said, personal choice, I don't necessarily advocate for this because there's no way they could go dairy free! But for your child it may make sense, and really, take it if you can get it!
- Severity of Allergies A big thing I had to reiterate was that her dairy and tree nut allergies are just as severe if not more than peanut. Remember, going into this, some of these staff members aren't close to anyone with food allergies, don't be condescending, but communicate as if they know nothing. You can't say anything enough. What you've taken months or years to learn and understand, you're explaining in one or two hour long meetings. Bring a print out so you don't forget what you're asking for! Have resources! Be your child's biggest safety advocate. Go in like you're selling something, have thorough information, BE CONFIDENT. I know it can seem like you're going in asking for things and being an inconvenience. This is the same thing every parent would do if for some reason loaded guns were kept on campus. You're keeping your child safe from the bullet of food proteins. (cheesy, I know...but don't let anyone make you feel less than because you're asking for safety for your child's life!!)
- Wiping Down Surfaces We've reiterated that soap and water is best to remove proteins, not lysol wipes or similar. Her table in the classroom and lunch room is wiped down accordingly.
- Riding the Bus She didn't start riding the bus until the second semester, but once we decided to let her, we had a second 504 meeting to update the document. The bus driver came and met with us along with the Transportation Head of the school district (I was impressed), he's been explained EVERYTHING, he practiced with the tester AuviQ about 10 times, bless that man. She has an assigned seat that gets wiped down before sitting and any child can sit with her as long as they don't eat food.
- Lunch Time and Snacks She sits at the same spot for lunch every day, at the end of the table. This was a hard decision for me because I didn't want her to feel left out. But there are kids at the end of every table, so that comforted me. If she were at an "allergy free table" she'd be by herself...that's not happening. The kids sitting next to her aren't milk drinkers, my biggest fear is a milk spill...they're kindergarteners. Snack time is at the end of the day in the classroom, and the best thing is her teacher has been so intentional about teaching the class about food allergies! I go visit and at some point or another, each child has come up to me and said "I washed my hands really good because I ate cheese today and I wanted to play with Ansleigh" My heart y'all, this teacher is getting a big present this year. (For next year, I'm debating adding classroom education options to the 504. Food Allergy bullying is on the rise, and I feel education early on creates empathy, that's a post for another time.) So each day at snack there's full class awareness for her, not just the teacher and Ans. I send in her own snack, and I also sent in an Ansleigh Snack Box at the beginning of the year, with Ansleigh friendly snacks in the event that I forget one day! It also includes a few treats, sweet snacks, candy that are safe, in case there's a day the kids get a treat, she has some. Her teacher also knows she can have Starbursts, so that's often a treat she'll give the whole class so they're all the same. I'm telling you, we have a saint for a teacher!
Allergy Action Plan
Included in the 504 is our entire Allergy Action Plan. Should she knowingly consume an allergen, what do you do? Should she have hives, what's the plan? Below are the basics, but everyone should develop their own AAP with advice from their allergist and knowledgeable pediatrician!
- Known Allergen Consumption Should she knowingly consume an allergen. This is the order of action: AuviQ right away. We don't wait. Once administered, make sure she's lying down, legs elevated. Call 911. Have 2nd AuviQ ready if symptoms don't ease up or get better. Call Parents.
- Benadryl Benadryl is an afterthought. I practically yell this each time. It's not a give benadryl and see if it calms it down. If anaphylaxis is starting, Benadryl merely masks the severity. There first defense is epi, the benadryl is merely for comfort once the reaction is being fought with the AuviQ.
- No Known Consumption If there's no known consumption but 2 systems are affected (skin/stomach, skin/airway, airway/stomach) the action plan is the same as Known Allergen Consumption listed above.
- Hives Should she develop hives, with no other systems affected, and no consumption of allergen known, send her to the nurse for observation for 5-10 minutes. If nothing progresses, it's likely contact reaction. Keep an eye but good to go. (Ansleigh often gets random unexplained, contact hives, once again, different for each child.)
This covers the basics of our current 504 plan. I'm sure I'm forgetting something, but it's a start, I'll likely update this post for years to come, as we grow and have new experiences. I hope it's been informative. The best thing I've done secondary to developing a 504 is support the teacher. We LOVE our precious teacher, and I am in constant communication with her. I have the time so I volunteered to be room parent. I know all the allergens for every student, so I've provided snacks that are safe for everyone (add soy and sesame to our list). It's brought me great peace of mind for the start of school. And as I said, clear communication about the severity is so important. I've heard from many teachers that parents will send their children to school without telling anyone they have a food allergy and without epinephrine. They don't understand, there is no "minor" food allergy. This breaks my heart. Education even among food allergy parents is lacking. My heartbeat here is encouraging, educating, and uplifting...without fear mongering. Know if your child has a food allergy, they NEED access to epinephrine. Past reactions are not indicators of future reactions. Severity of reactions can vary based on your child's body each day.
If you have any questions about developing a 504, please reach out!! The food allergy parent community is far reaching and big loving, don't do this alone!