Sending a child off to public school is hard on any parent. It’s a massive transition for the whole family. Ours just has a few added details that makes everything that much more interesting.
On one hand, I didn’t have to be terribly worried if she was ready, she was/is…and I didn’t have the anxiety and stress of her adjusting to being full-time outside the home, as she’s been in full-time care since three months old, even though starting in a new place with new adults and kids is a big change for any kid. Plus, she can be a bit shy and like any parent, I’m obviously worried about her making friends and being social, but I know that will come with time. But I had enormous fears in other ways that I’ll explain here in a bit…
First I just wanted to talk about Lark, in general…she’s more than just food allergies and asthma. She’s smart, funny, kind (albeit sassy at times), carries herself with a quiet confidence, loves music and art, reading books, writing her name (usually in all caps), is always asking how words are spelled, is incredibly observant and has been so excited about starting kindergarten. Technically, she missed the age cutoff date by 6 days, but our state allows us to sign a waiver to enter her into kindergarten anyway. She was more than ready and we were so excited to get her enrolled.
Enrolling Lark in kindergarten was a worry of such great magnitude for us. As you know, she has several life-threatening food allergies and asthma that can be severe at times. Both separate issues, but also intertwined. So we set forth on the path to putting her into public school, with all of its new unknowns and variables that can create a dangerous environment for her. Up until now, I’ve always provided all of her meals and snacks for her daily life, which I still plan to do, even in school. But we have other things to consider, like the fact that, up until now, her eating environments have been mostly controlled by an adult and while she’s always eaten with and around other kids and foods that aren’t safe for her, she has always been supervised and an adult has always been in charge of serving the kids, observing and taking care of messes, should they arise. Lark is allergic even via touch. If someone spills milk on a table, it gets wiped up haphazardly and she sits down to the table, she will break out into hives wherever her body touches the surfaces that also touched dairy, egg, etc. So thinking about situations like school cafeterias really freaked me out. No, she won’t be eating prepared meals from the cafeteria, but she will be surrounded by new kids who don’t necessarily know about food allergies and touch her or offer her foods that are off-limits, new surfaces that could be contaminated, and new adults who have to learn to respond and know when to offer help or intervene.
Not to mention, new scenarios of playgrounds, unsupervised foods, kids who’ve eaten or touched things she can’t and contaminating classroom or other spaces she’s now involved in. SO. Many. Variables. And granted, most of the time, things go fine, but in a world like ours, we have to be prepared for what ifs.
So the process started back in the spring for us with Kindergarten Round-up, which was our first interaction with the school and it’s staff. I ended up emailing them beforehand, and talked to someone on the phone, indicating I’d need to set up some sort of meeting with staff to go over her issues prior to school starting, which they agreed with, but we’d start at round-up and go from there. Round-up was just a generalized overview of the school system and what’s expected from students, parents and school staff. Each teacher had a short presentation, as well as the principal. While the parents were in the informational portion, the kids were whisked away to a classroom with activities and, or course, snacks. I had a panic moment about it, with good reason, because they ended up serving the kids fruit and goldfish crackers. Lark can’t have the crackers and thank goodness I had the forethought to mention it before they let her have them and someone popped into the room before serving also to be sure about kids with food allergies, so we avoided that snafu.
Before leaving, I chatted briefly with one of the teachers about Lark and she directed me to the school nurse, who I had a quick conversation with before deciding that this needed a more in-depth review before school started. We scheduled a meeting later down the line, I think in May and June…it’s hard to remember now, but it was before school’s end. I met first only with the school nurse at that meeting, where I gave her a general overview of Lark’s health issues, medications, etc and I first suggested developing a 504 plan for her, which the nurse wasn’t entirely sure was necessary. But after getting into greater detail about how sensitive Lark is and discussing with the 504 plan coordinator, we decided it was probably best for her going forward. In the past, we haven’t utilized one because they’re typically not used in daycare or preschool settings due to the fact that those institutions are generally privately funded. Each care center she’s been to has been amazing at communicating with us and following the protocol that we’ve laid out for them. 504 plans are typically reserved for public schools that are government funded, but I believe they are now available as well for private schools. I knew about them from previous research on food allergies and had read stories of other moms who used them for this very reason, so I knew long before she entered the school system that I’d be requesting one.
A 504 plan is basically a plan put in place for children with disabilities who need accommodations while in a school setting. It falls under the Americans with Disabilities act and protects the child while in the care of a school. It provides guidelines for how to make the learning experience fit the child’s needs, while still offering the same curriculum and opportunities of other children. Lark has what is considered a “hidden disability,” and FARE (Food Allergy Research and Education) puts it better than I can, in regards to having one created for food allergies (they can be used for any type of disability, but have a process to follow and an approval is typically granted in the end). Here is a great overview from FARE:
FARE recommends that parents of children with food allergy create, in collaboration with their school, a written food allergy management plan. One type of plan is called a 504 Plan, which is available under a federal civil rights law, Section 504 of the Rehabilitation Act of 1973
Section 504 applies to any school that receives federal money (i.e., all public schools and many private schools), and applies to a variety of health conditions, including a life-threatening food allergy. The U.S. Department of Education’s Office for Civil Rights lists allergy as an example of a hidden disability for the purpose of Section 504, and also further explains how a food allergy, for many children, would be considered a disability under 504.
Section 504 allows you to create, in collaboration with the school, a 504 Plan, which is a written management plan outlining how the school will address the individual needs of your child, and allow your child to participate safely and equally alongside his/her peers during all normal facets of the school day.
To begin the 504 process, you need to contact the school’s 504 Coordinator. This could be someone who works at the school, or it could be someone who works for your school district.
The 504 Coordinator will help assemble a 504 Team that will determine if your child qualifies for protection under Section 504. Typically, a 504 Team includes key members of the school staff such as the school nurse, teachers, food service personnel, coaches, counselors, and others.
In making their determination, the 504 Team will rely on medical information. As a result, you may be asked to obtain specific medical information or medical recommendations from your child’s allergist and/or pediatrician for the Team to review.
Once the 504 Team finds your child eligible, the Team will create an accommodation plan (or 504 Plan), which may include a number of components such as an Individual Healthcare Plan (IHP) and a Food Allergy & Anaphylaxis Emergency Care Plan.
Written management plans such as 504 Plans have become increasingly more common over the past decade, especially for children with food allergy. These written plans come in a variety of shapes and sizes, ranging from a one-page, handwritten form to a 20-page plan made up of multiple components (IHP, Food Allergy & Anaphylaxis Emergency Care Plan, Cafeteria Procedures, a Transportation Plan, and a Staff Education Plan).
Our 504 plan will be an integral part of our daughter’s education. There is a great explanation of 504 plans at understood.org as well. We are still in process, but to keep this from being an insanely long post, I’ll going to draft part 2 to explain the 504 team meeting that we had before had school and the process surrounding that up until the point we are at now, which is still finalizing the plan and preparing for the approval process. It’s been a great process, thanks to the school and the staff involved, but it’s a lot to discuss and think about. I hope that by sharing our process with others, they’ll be able to navigate their own, regardless of disability…part two coming soon…