Chelsea Now photo by Sandra Larriva
Turner Grieves with his parents, Mickey and Perry, outside their apartment building on West 22nd Street earlier this week

By Sandra Larriva

At 10 months old, Chelsea’s Turner Grieves was taken to the hospital because he was having difficulty breathing and had broken out in hives. Earlier that day, back in 2000, he had eaten banana, wheat germ and tofu. Several medical tests later, Turner proved to have more allergies than months of age—18 in number, or a “full bucket” in the words of his mother, Mickey. At the time, the doctors attending to him said that the Reese’s Peanut Butter Cups that Mickey had indulged in occasionally while breastfeeding her son might have helped determine his allergy sensitivities. At age 6, Turner is still at risk of having a severe systemic allergic, or anaphylactic, reaction to peanuts, eggs and milk.

“After Turner developed food allergies, taking care of him has been a full-time occupation for Mickey and me,” said Turner’s father Perry, who spends every lunch hour at his son’s school to ensure that the boy does not come in contact with any of the allergens that can endanger his life.

Turner’s story is not an isolated one. There are an estimated 2.2 million school-aged children with food allergies in the U.S. While many neighboring states, such as Massachusetts, Connecticut and New Jersey, have already published statewide guidelines to help schools manage students with food allergies, New York has yet to pass a similar measure. (The Food Allergy and Anaphylaxis Management Act, which calls on the federal government to develop voluntary guidelines for controlling food allergies and anaphylaxis in New York schools, was referred to the Senate Health, Education, Labor and Pensions Committee last month.)

A week after the 10th Annual Food Allergy Awareness Week took place May 13–19 in more than 31 states, including New York (it is organized by the Food Allergy and Anaphylaxis Network), parents like Perry and Mickey Grieves acknowledge the New York City public school system’s efforts in addressing their children’s medical needs but still believe that more needs to be done.

“Though they have been very accommodating, it’s insufficient,” said Perry Grieves about P.S. 3, the Greenwich Village school where his son currently attends a Kindergarten-first grade class.

Of the three major foods that present problems for Turner, peanuts loom large.

One of Turner’s classmates is also anaphylactic to peanuts. His mother, who spoke about the school on the condition of anonymity, feels very positively about the program her son is in: “The teachers have done a remarkable job at keeping me informed. They go out of their way at requesting that kids don’t bring peanut butter-and-jelly sandwiches to fieldtrips.” But she, like Turner’s parents, struggles with the availability of peanuts and peanut-based products in the school.

“I understand peanut butter is cheap and convenient, but I don’t think it’s necessary. There are a lot of other options that have the consistency, taste and nutrients of peanut butter. My question to the parents is: What kind of message are you giving your kid if you say, My child’s food choices are more important than another child’s life? New York City is certainly lagging in awareness of this very serious subject.”

In Turner’s case, his parents withheld him from nursery school because they didn’t consider any of the potential schools safe. After looking at four different public schools in the area (the family lives in Chelsea), the Grieves chose P.S. 3, on 490 Hudson Street, which offered them a para-professional to supervise their son at all times and a peanut-free classroom (labeled accordingly by a sign on the door).

However, Perry Grieves also said that, late last year, the “This Is a Peanut-Free Classroom” sign came down at the school’s request and that the peanut-free regulation is not closely observed. Even if the sign is back up this year, he said, “kids are allowed to eat leftover lunch as a snack in the classroom [regardless of its peanut content]. We haven’t been able to control that because it is parents who provide the snacks.”

At the beginning of the school year, parents whose children have special needs can fill out the Department of Education’s “Provision of Health Services” or “Section 504 Accommodations For Students” forms, which aim to “make certain that all students with special needs are provided services to ensure their participation in the educational setting.” According to Perry Grieves, filling out the form on behalf of Turner should result in banning allergens from his son’s classroom, if not the cafeteria. “Having peanut butter-and-jelly sandwiches in the classroom during snack time is a direct violation of form 504,” he said.

The mother of Turner’s classmate, who declined to give her name, believes that the school is “really being careful that the kids aren’t eating obvious peanut items in the classroom.... The kids themselves in the lunchroom have responded by washing their hands.” But she also struggles with the fact that peanut butter is served in the lunch room: “I feel like I need to be at lunch everyday myself or hire an adult to keep my son safe, and that makes it difficult. It sets him apart.”

According to the New York City Department of Education, there are no peanut-free schools in the state. “We do not ban peanuts from school cafeterias because we provide food for 1.1 million children and we have contracts with major food distributors, but we do work closely with the [New York City] Department of Health, and the school nurse has a list of all the students with allergies,” said Margie Fineberg, a spokeswoman for the DOE. According to Perry Grieves, the school’s explanation for not having a peanut-free cafeteria is that they “don’t want to deny anyone’s right or nutrition access.” The school’s principal, Lisa Siegman, refused to answer numerous phone calls inquiring about the school’s position in relation to food allergies.

If Turner does come in contact with peanuts and develops a severe reaction, he would have to receive one shot of Epinephrine via an EpiPen every 15 minutes that he is away from the hospital. According to Mickey Grieves, P.S. 3 did not allow EpiPens in the classroom while her son was in Pre-K and Kindergarten because “they thought it could be used as a weapon and worried that other children might suffer consequences.” To this, she replied, “An EpiPen is not going to kill a child; it’s going to save a child. Children die in seconds for not having an EpiPen.”

According to the Food Allergy and Anaphylaxis Network, 35 states in the country currently have adopted laws or regulations that allow students to have and, if needed, self-administer their prescribed epinephrine during the school day, “provided that certain conditions (such as parental, physician, school nurse and local schoolboard consent) are met.” New York is on the list of states that are still waiting to have those laws or regulations in place.

This past fall, P.S. 3 began allowing EpiPens in the classroom. In addition, the school organized an EpiPen training for teachers at the beginning of the school year, and the para-professionals are now allowed to carry and administer them. Turner, who is well aware of his medical situation, has his EpiPen strapped around his waist at all times.

“We’ve explained to Turner that he is the man on top, the one in charge, which is a lot of responsibility for a small kid,” said Perry Grieves.

He added that it is the parents who have forced the school to make these recent changes to accommodate students with food allergies. At the beginning of this school year, Turner’s father filled out form 504 and personally delivered it to Fred Kaiser, a DOE health director for Manhattan schools, telling him that he wanted his son to carry his own EpiPen. The result is that Turner is now able to administer himself with as many doses of Epinephrine as needed should he have an anaphylactic emergency.

Perry Grieves also wants to arrange a meeting with the school principal and the parents because, in his words, “when it comes to allergies, we can’t afford to have a misunderstanding.”