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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Practicalities of the Six Food Elimination Diet

snackI never wanted to write a recipe blog.

Now I feel that I have an obligation to share the practical, actionable things I could do to make tolerable the previously-unthinkable diet my daughter had to endure during the summer and early fall of 2010. As I say that, I am assaulted in my mind by the knowledge that right this moment, mothers are at their stoves faced with the dilemna of how to make a meal out of rice, bananas, and apples — not because they didn’t make it to the store or because they’re low on money, but because those are the only foods their child is able to eat without serious illness. Eosinophilic esophagitis can — and sometimes does — rob families of the very basic ingredients of any normal meal.

I write this knowing that to call it hard is to make it relative to a normal diet — and in that case, it really was hard. In relation to a diet with even more restrictions, it was easy. Relative to the fat-free diet Sammi would need to follow four years later, it was also easy. In the moment, however, for us, and for other families managing it after an unrestricted diet, it was daunting. We were given a packet of information from the gastroenterology practice that assumed, for one thing, that we ate meat, which we did not and which Sammi’s doctor did not want us to begin doing, lest we contaminate the experiment of this elimination diet entirely. So we started with the foods she could eat, and quickly learned which of the newly forbidden foods (dairy, egg, soy, nuts, and wheat) we could substitute with analogous items on her “yes” list.

One day, tired of using recipes to make the ingredients I would use in other recipes (imagine a precise blend of flours to make a gluten-free flour blend, or the chemistry experiments I did to make something that would approximate a matzo ball), I threw a handful of finger foods on a platter in the living room and told my kids that it was lunch. Hearts of palm, baby corn, olives, cubed soy-free nut-free gluten-free vegan cheese, dried plaintain, and rice crackers. It bought me an hour before I had to start conjuring dinner out of vegetables and rice, again.

And it was hard.

It was never not-hard.

I didn’t want to write a recipe blog, but it was exceedingly difficult finding recipes that worked without fish, dairy, egg, soy, nuts, and wheat — a diet also known as the “six food elimination diet” because it also forbids fish/shellfish (something we didn’t have to test, since she’d never eaten either of those foods). The best things we discovered during that time were soups and rice & bean dishes, and also the Easy Whole Grain Flatbread (using any flour — we liked it with chickpea flour) by Mark Bittman. You can also find some links to products we could use on my Food That Helped page. We were not thrilled about adding junk foods with artificial flavors and colors to Sammi’s diet, but there was so little we could give her that qualified as a treat — and precious little that didn’t make her feel freakish among her new friends in kindergarten. If a packet of Betty Crocker Fruit Snacks would help, we bought them.

If you have come across this page because your child is on a restricted diet, the steps you need to take to determine whether a packaged product is safe for him/her are:

  1. Check the ingredients. Read them at least twice, checking for derivatives of the off-limits food, too.
  2. Check below the ingredients for a statement about shared equipment and/or facilities with your off-limits item. Sammi was allowed to eat products made in the same facility with her forbidden foods, but not products made on shared equipment with those forbidden foods. Find out what your doctor recommends.
  3. If there is no “shared equipment/shared facility” listing on your product, or if what your child is restricting is not one of the top-eight allergens (wheat, dairy, egg, soy, peanuts, tree nuts, shellfish, regular fish), call the manufacturer. Most food/beverage companies now have a customer service person dedicated to allergy issues. You need to ask about the production facilities and the content of their “natural flavors” if they list any in their ingredients.

It is an exhausting experience. I got quicker at identifying foods we could use, and I came up with a handful of reasonable meals during that time, but it was nearly a full-time job. The most important meal that we created, with much trial and error, was a replacement for Sammi’s favorite food: macaroni and cheese.

It wasn’t the same, but it was close.

Six-food-elimination-diet people: hang in there.

Macaroni & Cheese, Sort Of

1 lb Tinkyada brand gluten-free noodles
3 cups Pacific brand oat milk
1 small onion, minced
1/2 tsp pepper 1/2 tsp dried thyme
1 bay leaf
4 tbsp Soy-Free Earth Balance margarine
3 tbsp brown rice flour
3 cups Daiya brand shredded cheddar cheese (or two packages Daiya cheddar “wedge”)

Cook the pasta until just before it’s done. Drain quickly. Work fast.

While it’s cooking, melt the soy-free earth balance in a saucepan. Add the brown rice flour and mix well, then slowly add the milk and onions, whisking all the time. Add the bay leaf. Cook until thickened a little — maybe five minutes. Remove the bay leaf. Add the cheese, stirring until melted.

Add the cooked, drained pasta to the cheese sauce in the saucepan and mix together. Pour into a lightly-greased casserole dish and broil for 2-4 minutes, until the top is browned.


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A New Person

fourIn late April of 2010, our four year old daughter Sammi was a real person.

She was round-faced and giggly, with big brown eyes that squinted up at us in the sunlight under her blondish brown fluffy hair. She sang as she played, totally aware of the things she needed to master before kindergarten in the fall. She practiced tying her shoes with her tongue sticking out, just as her father does when he concentrates. She took a kids’ acrobatics class at a local circus school, charming everyone with her huge smile and bulldog energy, half the size of the other four year olds and twice the personality. Her voice sounded like a sped-up record — high and squeaky.

She was the mascot of her older sister’s class at elementary school, and teachers who knew Sammi would be coming as a student in the fall would wink at her as she and I walked through the hallways to volunteer or to pick up her sister. Her preschool was less than two blocks from the elementary school, and I found myself in a rhythm I could finally count as lucky. This is a good life, I often thought to myself. Next year, it would be easy — both girls in one school. For five days a week, five and a half hours a day, I would have time utterly to myself to work, manage our home, and maybe even volunteer in their school.

It would have been perfect, except that Sammi was still unable to function without a proton pump inhibitor (PPI). Take away her reflux medicine, and the gagging and coughing increased dramatically. Even on it, she still made a funny sound several times a day, after which, if asked, she’d matter-of-factly describe the last food she’d eaten rising back into her mouth.

Her pediatrician laid down the law: at four-and-a-half, Sammi needed to see a gastroenterologist again. She shouldn’t have infant reflux anymore.

We called the practice associated with the big children’s hospital in our area and were assigned the one doctor whose name we’d heard before. The rumors weren’t flattering — she was described as cold, bordering on rude, and very dismissive of parent input. A friend had told us this doctor insisted, over the phone, that she mimic the sound of her daughter’s retching so that the doctor could determine if it was really retching and not something else. Still, we saw this visit as a formality, at most a chance to get a more appropriate prescription for Sammi. How much time would we really need to spend with this doctor, anyway?

Unfortunately, this doctor was unwilling to talk about medication. “She shouldn’t be on a PPI anymore,” she told us. “I need to scope her.”

Scope her. It sounded vaguely alien to me — like probe, maybe. What she meant was that Sammi would undergo an endoscopy, to take a look at her esophagus and see what was happening in there to cause so much reflux. While they were in there, Sammi’s old otolaryngologist — the same one who had diagnosed her strange cardiac anatomy more than three years earlier — would perform another bronchoscopy to see if her trachea had opened up further.

This would make the fifth time I’d stand at Sammi’s side in an operating room and sing to her until the anesthesia knocked her unconscious. It would have been the sixth if they’d let me in the cardiac theater before they repaired her aorta in 2006.

This time, though, Sammi was a person. She wasn’t a baby or a toddler. She was four, and she talked with me, and we planned to open a restaurant together one day called “Sammi’s Restaurant: It’s Free!” She held my hand while we walked in a circle from home to preschool to her sister’s elementary school and back. She was looking forward to turning five, when she’d be allowed both to chew gum and to go to kindergarten.

It was happening again. It was all happening again. And now it was happening to a new little friend.

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