Alright then….excuse my delay, this is just the nature of my life! Finally getting around to writing part two of our process of enrolling Lark in public school with food allergies and the process of establishing her 504 plan. You can read part one here.
So I left off last time after an explanation of what a 504 plan is. I won’t go into great detail here, since it’s in my other post, but they fall under the American Disabilities Act and are put into place by government-funded educational institutes (though I’ve read private schools are using them now too) as a plan or guideline of a child’s care in the school environment who has a disability or needs accommodations for any number of reasons. It’s different than an IEP, but is coordinated by the same teams of people and in the same realm. In Lark’s case, she doesn’t require an IEP for her specific plan of care at this time, but some kids, depending on the circumstances, may require IEP coordination as well.
Emotionally, I felt extremely overwhelmed. We had so many new variables to think about and the safety net of her small preschool and daycare settings would be gone. We’ve done our best to prepare her up until this point, educating her on food allergies, but in reality, she still very much a child and was only 4 years old at the start of kindergarten. My heart could feel the weight of the pressure that will eventually be put on her, the responsibility she will have to take on in learning to be her own advocate, and the journey of learning to navigate a world that is NOT allergy-friendly with confidence and knowledge. Plus, knowing that kids (and adults) can be less than kind to others who are seen as different. She requires special treatment in some scenarios, and that can cause her to stand out, which gives me anxiety about her being unnecessarily singled out. All the stories you hear nowadays about bullies using food allergies as a way to taunt other kids, putting their lives at risk, are enough to make this allergy mom go into full-blown panic attacks. It’s a scary world as it is, and we just have this extra load to carry. I can only hope we’ve been a good example to her. I can only hope she continues to remain safe. I can only hope we can continue to educate her properly and that she continues to be the courageous child that she is.
So back to the process…I communicated with the school over the summer, scheduling our big, full team meeting the week before school started. Later than we’d all hoped, but it all sort of got jumbled in the end of the previous school year and I was waiting on a stack of paperwork from her allergist to be incorporated into the plan. I took both kids for a follow-up appointment with the allergist in late spring, with the intention of evaluating everything with our doctor in preparation for Lark’s 504 plan. Apparently, he’d never heard of 504 plans, but agreed to get the necessary paperwork going and sign the forms they provided to me. Long story short, they never got the paperwork to me and never returned my calls about it, which left me scrambling the week before the meeting to get in touch with her pediatrician and get all new paperwork submitted. A pain in the butt (I’d have used a less polite word here, but I digress…). I was upset and frustrated, but in the end, we got all of the paperwork necessary to begin the process, thanks to the attentiveness of her pediatrician, who I would have gotten the paperwork from initially, we just hadn’t been in to her office lately.
The paperwork we were asked to provide was the following:
- An outline of all her medications and what they’re prescribed for: Budesonide and Albuterol for asthma, EpiPen Jr. two-pack, Benadryl, Oral Steroids, like Prednisolone, for emergencies, and topical creams for contact dermatitis. I’ve provided a set of all meds to the school in a small first aid kit pouch that’s insulated for things like EpiPens or diabetic medications, so they don’t get affected by temps. I purchased ours off of Amazon and labeled with name and phone number. You can find the one we purchased by clicking here: PRAC Medic EpiPen Case
- An asthma action plan: It’s basically a step-by-step plan of what to do during an asthma attack. The paper is laid out like a stop light, with sections of green, yellow and red. Each color representing each stage of the attack and what to do, which type of meds to administer when, and when to call 911 and/or take her to a hospital.
- An Anaphylaxis action plan: Same as above, but specific to a food allergy reaction. Which symptoms to watch for, when to administer the EpiPen and when to call 911 and/or take her to a hospital.
- A doctor’s signed diagnosis of her conditions, which are life-threatening food allergies and Moderate Persistent Asthma, sometimes listed as Acute Asthma.
- Emergency contact info, hospital and doctor contact info, etc
- A recent photo of Lark so other school staff can recognize her. It was distributed prior to school starting when they went through a training session on food allergies and how to handle them.
With all of this information in hand, Lark and I headed to the meeting. I had decided early on to take her with me because it involves her personal care. It’s important for her to be aware of the process and also to get to know the people in charge of her well-being so that she’s not afraid or apprehensive in the event of an emergency. It familiarizes her with the people and the steps it takes to keep her safe.
In the meeting was the 504 Coordinator, the school nurse, the principal and the teacher. I had given basic instruction on what to do in specific emergencies, but the purpose of the meeting was to gather all info and put it into official form, making sure to leave no stone unturned. Each of them had very important questions for me. From 504 coordinator, it was questions about what to do in every scenario…cafeteria, classroom, playground, events, etc. From the teacher, it was how to conduct her care while in class. From the nurse, it was her specific symptoms, which medications when and what types of numbers she should have for oxygen levels, etc. during episodes. From the principal, it was more questions about how to make the entire school a safe environment for her.
It was an interesting meeting, to say the least. I get the impression that Lark is their most severe case to date, as some of the info seemed to overwhelm them, but they reassured me that they were all there for her and would all be absolutely sure that the plan would be followed strictly. For instance, two burning questions, since Lark is contact-allergic to offending foods, was what to do if she comes into contact somewhere like the playground where you can’t monitor every child for hand-washing, or like that exact moment in the meeting, when Lark was playing on the floor. I kept hammering home the point that she cannot live in a bubble, she WILL come into contact with things that can harm her and that the most important thing is to be prepared for that scenario. It’s impossible to avoid every scenario, and I feel like this made them uneasy. They approach it from the angle that they’ll keep her safe and nothing will happen, which would be awesome, but the reality is, life happens and something will eventually happen at school. The plan is there to keep everyone prepared and at the ready when something does happen. It’s strange, as a mom, to tell a group of adults that they can’t possibly protect her at every given moment, because there are too many variables involved. Could she get hives from the floor? Maybe…but we can’t keep her off of a floor at all times and in that bubble. She has to experience life and she has to learn to deal with reactions when/if they happen. Do we want her protected always? Absolutely. But aside from locking her in said bubble for her whole life, it’s just not practical. We want her to have every experience she can, just like other kids, with a reasonable sense of fear, not a paralyzing sense of fear that causes her to isolate from the world.
So items in the specific plan…I won’t outline everything, because it’s a lot of information, but if any other moms would like to see our plan as an example, I’d be happy to share it. I’ll break it down by the main parts of the plan.
- When snacks are served in the classroom, every child will have their hands washed after the snack and also be taught not to share foods or touch other people’s things while around food.
- Tables and other classroom areas are to be wiped down after snacks or any item that may be an allergen.
- I provide a box of snacks for her for the year for afternoon snack times and I provide any type of special snack in the event of birthdays, holidays, etc.
- For classes like art, supplies need to be evaluated prior to projects (like paint, etc) and absolutely no projects for her involving eggs, egg cartons or milk cartons. We discussed dedicated paintbrushes and utensils for her at one point, since the art room is shared by other classes, but the final plan I believe just says to wipe them down (I’m trying to remember specifics as I don’t have the final plan in hand yet).
Obviously, this was my biggest concern. She’s mostly responsible for her own meal times now, with less supervision than she’s previously had, but between the teacher and the aides, they’ve all been informed of Lark’s issues and she has several adults monitoring her lunch times. At one point, they talked about having a dedicated aide with her at all times, but I sort of hated that idea because it just makes her stand out and I fear other kids being unkind.
- I pack Lark’s lunch daily. I always have since she was an infant in daycare and preschool settings.
- She sits at the peanut-free table, because that’s the only allergy-friendly table they have, even though peanut is only one of her allergies. So kids with dairy, egg, etc sit there too, but most kids who sit at the table with peanut allergy understand the importance of it, so they are already used to not sharing food, etc.
- She sits at the same spot every day and if anyone is there before her, they’re to wipe down the table entirely to avoid contact reactions. Kindergarten goes to lunch first, so this hasn’t been an issue, but next year and beyond, she won’t be first to the cafeteria anymore, so tables will likely need washing before she can go in.
- Other children who are allowed to sit at the table are instructed about what not to do at the table, like offer food, touch other people’s lunches, etc.
- They aren’t able to accommodate proper hand washing after lunch, which is understandable with the amount of kindergarteners there are, which is why the action plans are so important so that if she has a reaction on the playground after eating where other kids have touched equipment, etc, the adults know what to do.
There’s not much you can do to avoid possible reactions on the playground, so keeping everyone up to date on Lark is crucial, especially since she’s allergic to odd things as well, like the wood chips they landscape with.
- Before school, all kids wait on the playground until the bell rings. I still walk her completely in to the side her classroom is on to be sure her backpack is where she can find it to head to the class. I always fear it will get lost and so will her safe lunch, but we’ve managed so far!
- On days when it rains, kindergarteners are directed to the cafeteria until the bell rings, but since they’re serving breakfast to every grade, we specified in the plan that Lark is to go directly to her classroom, since the cafeteria is too much of a risk at that busy time of day. So I take her in to the teacher during rainstorms. I feel bad sometimes that she’s not with her friends, but I actually don’t think she minds because she gets to play on her school ipad until the bell rings.
Other school events:
We haven’t really dealt with this yet, as there’s been none, but the school would prefer that I attend with her if at all possible, so we will see how that goes when the time comes. I work full-time so sometimes that isn’t feasible, but we will cross that bridge when it comes.
We dealt with this week one, so we were able to write certain things into the plan before it was fully submitted. So the school doesn’t allow Lark to self-carry her own meds. They have to remain in the office at all times, unless she leaves for a field trip, etc. So week one, she took part in football/cheerleading event, which was a bit chaotic because school had just started and her plan was just beginning to be implemented. The cheerleading clinic was run by moms and the cheerleading coach, who doesn’t know Lark since she’s at the high school. After school, the kids would be escorted down to the gym for the clinic, then later fed dinner and escorted to the game, where they got to cheer on the field. Naturally, I panicked, because of all of the people who didn’t have knowledge of her issues. So I met her after school, even though she was supervised, just to be sure she got to where she needed to be. I also tracked down several different adults in charge to explain the situation and was also able to see all of the food being offered for the dinner portion so I could verify ingredients, etc. They were great about it and assigned one specific parent volunteer and cheerleader to be with her at all times. I then went to the office to be sure she had access to her meds, since it was after school hours. The secretary informed me that once she and the principal were gone, the office would be locked down. Naturally, I panicked again, because she’d have no access to meds. They weren’t eating until 6, so after I picked up Arlo at 5:30, I went back to the school to take her extra set of meds over so she would have them. When I walked in, the principal was still there and reassured me that she was checking in on her and that she felt she needed to stay to make sure Lark and one other allergy student were looked after properly. It was a good feeling for me, especially after feeling beside myself with the chaos of running back and forth and figuring things out on the fly. The event went off without a hitch and we put a section in the 504 plan that states that her meds will be transferred to the adult in charge of any extra-curricular activity prior to the office being closed, and the adult in charge will need to be brought up to speed on the protocol at the time of event. I’ll still have to be diligent about getting details on food prep, if it applies, ahead of time so we can be prepared for that.
This is the difficult part for us right now. Because Lark can’t carry her meds herself, riding a bus to/from school would require an adult handing her meds over to the bus driver, who has to be fully trained for emergencies of this kind, then handed back to whatever adult is on the other end, either at school or after school. The only bus stop near her after school care is about two blocks away, meaning an adult may not always be present, meaning her meds may not be transferred properly. So for now, I have to leave work at 3pm, drive her around the corner to after school care with a different set of meds, then come back to work. It’s a pain and we are trying to find the best solution, but for now, this is how we are dealing.
So far, everything has been really good. She’s doing well in school and loving it. She’s had a couple of asthma issues and some hives, but nothing major. The 504 coordinator wrote the final draft, which required a few changes to wording, and is now in the process of being submitted for approval. The plan is being followed regardless, but approval guarantees that it’s recognized by the state and keeps Lark protected that way. My main goal is to keep her education as “normal” as possible and help her feel safe and secure at the same time. We want her integrated like any other child, with adjustments in place for scenarios where it’s necessary. My biggest fear was that she’d be isolated too much, but that’s not been the case at all. I feared she would sit alone at the peanut table, but I’ve since been told that a lot of kids want to sit there at lunch and the table is always packed. I even had another parent message me to ask about proper food handling and prep for her own child to be sure it was safe for her to sit with Lark. I also made it clear that it’s important to us for the kids to receive education about food allergies and about Lark’s issues, but that I didn’t want her singled out in a way that made kids upset with her. The kids have been very understanding and the school has been great with communicating and making adjustments where necessary.
Sending a severely allergic to public school is scary, to say the least, but with proper planning, resources and communication, it can be done fairly seamlessly. Be vocal in your wishes, be extraordinarily detailed and have patience. I’m still stressed about it every day and will continue to worry, but I feel much better having this official in place. Our daughter will thrive because we are supportive and diligent.
I hope all of this information has been helpful for even one person. A lot of people don’t know these plans exist or that there’s resources out there for food allergies and asthma. They’re manageable conditions, but also very dangerous conditions, so awareness and education are always key.