Kindergarten Numbers

kindergartenOn the first day of kindergarten, Sammi was still in the midst of the six-food-elimination-diet. There was no peanut-butter-and-jelly sandwich in her lunch — no goldfish crackers, no chocolate chip cookies. I can’t remember exactly what it was, but my best guess is that it was a thermos of rice and beans, some fruit, maybe some vegan chocolate chips.

She was excited for school. We were nervous — not because of separation anxiety, fear of a too-challenging academic environment, or worry that she wouldn’t make friends. She was happy to go, smart and curious, and looking forward to being in the same class with her best friend. We were nervous because she’d be surrounded by food she couldn’t have and people who might not understand why.

Before school started, we met with the principal, the district health clerk, and her kindergarten teacher to set up a 504 plan. Unlike an IEP (an Individualized Education Plan), which creates a set of legally enforceable accommodations for students with one of 13 specific types of learning disability, a 504 plan is an option for students whose special needs fall outside those concerns and is designed mostly for use in a general education environment. It’s sometimes called a “health plan,” as it is commonly used for students with allergies, asthma, diabetes, etc. — things that don’t necessarily create a learning issue, but need to be managed during the school day. A great comparison of IEP vs 504 is available here.

Sammi’s 504 plan was fairly simple. It required that:

  1. No one at school was permitted to give her any food that I hadn’t sent from home. A lidded, clearly labeled box in her classroom held a variety of snacks I replenished as needed.
  2. All wheat-based dough (Playdoh) was removed from her classroom and, as necessary, from the art room.
  3. Reasonable notice for special treats provided by the school would be made to us so that we could provide an alternative for Sammi.

Her teacher was warm and lovely and went out of her way to make the process easy for us. She sent a snack-day signup letter home to all the parents in the room letting them know that there was a student in the room with special food allergies — an easier way to explain it than to describe eosinophilic esophagitis — and letting them know that they were not required to send special snacks, but that unpeeled oranges and bananas would allow that student to take part.

Some parents sent unpeeled oranges and bananas on their child’s snack days. Some didn’t. Sammi was fine with that.

Only twice that year did we run into trouble with noncompliance with that 504 plan. One day, Sammi came out the door of the school with her head low and her lip trembling. “Everyone got POPSICLES,” she said, “because we had a great first month of school.”

“Who gave them out?” I asked, hoping it was a surprise from a parent who didn’t know.

She named the principal, and said that he had tried to give her a popsicle twice, even after she said she couldn’t have it. “He said I COULD have it, that everyone could have it! But I said you didn’t send it, and he just gave my popsicle to someone else.”

Angry and said, I turned and saw the principal a hundred yards away, standing by a school exit. Asking Sammi’s sister to keep her company, I approached him and asked why he hadn’t let me know that he’d be giving popsicles to everyone. He said he didn’t tell anyone, that it was a surprise. I reminded him that he’d tried to give one to Sammi despite her 504 plan, and he said, “oh — but she didn’t eat it, right?”

I took Sammi home and made her homemade banana-peach popsicles. There was no point in arguing.

The next time it happened was after Sammi had passed through the most restrictive phase of the diet and had been given permission to eat eggs. The school social worker had high-fived her in the hall, and she’d been excited to bring a hard boiled egg in her lunch all week. We were all feeling free and grateful with just that one food returned to her, but truly, her diet was still quite limited. No dairy, wheat, soy, or nuts were allowed. When her gym teacher rewarded the class with cookies, she asked if they had things she wasn’t allowed.

“Go on, take it,” he told her, according to Sammi and her friends.

“No, I can’t,” she responded.

“Who wants Sammi’s cookie?” he offered loudly to the rest of the class.

That time, Sammi came home crying. On further investigation, I learned that the gym teacher hadn’t bothered to read the 504 plan provided to him because it was left on top of his mailbox and not inside it.

In the years since Sammi was in kindergarten, I’ve come to ache for the parents of allergic children who have to place so much faith in others to keep them safe. Had Sammi eaten a “forbidden” food, she would not have died. She would have simply had to restart that phase of the diet — each phase six weeks long. It was hardly the end of the world, but if she’d been dangerously allergic, it could have been.

A five year old should not have to be responsible for her own life.

A parent shouldn’t have to arm a five year old with that level of self-preservation skill.

For these two affronts, I’ve never quite forgiven the educators who ignored Sammi’s needs. Her kindergarten year was compromised enough.

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4 thoughts on “Kindergarten Numbers

  1. […] we had been through the process of developing a 504 Plan before to accommodate Sammi’s food restrictions, this was relatively straightforward for us, but we […]

  2. Wow. This is a good heads up to what to expect on the elimination diet. My daughter is 4 and she begins her 6 food elimination diet at the end of this week and I am TERRIFIED about sending her to school or allowing her to go anywhere without myself or her father, not knowing if everyone will be as strict with the foods as I need them to be. Her school so far has been very good about making sure she does not have any dairy (she hasnt been able to have dairy for over 2 years now due to her EGE). Now, she has developed EOE and I have no idea how to deal with it or adjust. If you have any tips on how to keep your kid motivated especially in the more trying time, please share. Thanks.

    • Oh Chelsey, I’m so sorry you and your child have to go through this. If your child is in a public school, you can legally request a 504 plan. That will hold the school liable to accommodate her though, as you read in my post, they sometimes forget or overlook pieces of it. I found the food allergy community especially supportive here. Face-to-face conversations with teachers, administrators, and support staff are the best way to get your point across. The best thing you can do, though, is talk with your daughter about the rules. Be sure there are special snacks just for her in the classroom, things that will be fun for her if other kids get a treat. Betty Crocker Fruit Snacks, for example, are safe for the elimination diet, or they were in the past (always check labels to be sure).

      The bottom line is that you have to shake down basically everyone: parents of the kids on the playdate, teachers, babysitters, grandparents, etc. This diet takes a long time and any slip up means you start that phase over, which is heartbreaking. Everyone has to be on board. If you feel like someone is not going to comply with the rules for your child, that person just can’t be around them unsupervised. It’s hard to do, but actually not as hard as adding weeks and months to this process.

      Hang in there — and email me any time if you need help. debi @ swallow my sunshine . com minus all those spaces (just trying to trick the spam bots).

  3. […] had just started kindergarten, learning to read and write and follow instructions in a classroom that necessarily had been forced […]

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