Allergies

By Deborah Markus, from Secular Homeschooling, Issue #13.

It was like the bad dreams I used to have while I was pregnant. I'd always just done something terrible — terrible for my baby, anyway. The most common one was that I'd smoked a cigarette. I've never smoked in my life and never wanted to; and the dream never included my actually doing so. It always started the moment after, with my horrified realization. I would clutch at my abdomen in a panic. Why had I done that? How was I going to undo it?

Now I was wide-awake in daylight. It had been years since the happy ending of that pregnancy. But it was the old dream all over again. Except it wasn't my own baby I might be hurting this time.

A few days earlier, a new mom had sent a message to my local group's loop. Just the usual kind of thing: Hi, can't wait to meet everybody, which park are we gathering at this week?

And then at the end, trying to be casual: "Also, we have crazy severe peanut and tree nut allergies. It would be really helpful if you could give me a heads-up if you or your children have eaten peanuts or tree nuts that day, so we can keep a bit of a distance. I have to do my best to keep my son safe."

I'm never happy about my husband's adult-onset allergies; but I'm grateful if my experience can help someone else on that rough path.

There's a lot of misinformation and ignorance about food allergies. I've heard people griping that their lives shouldn't have to be impacted just because someone else gets a little owwie from certain foods — and frankly, some of these alleged sufferers probably have nothing worse than a bad case of overanxious parents.

Here's what these people need to know:

My husband never had a food allergy until his late thirties. Then one morning he woke up allergic to what seemed like everything.

It took a long time to isolate exactly what foods would set off a reaction. In a way, we were lucky with the peanuts. That's an allergy that makes itself known. It didn't take more than a few visits to the emergency room to help us figure it out.

Eliminating peanuts from our home diet was no problem. Given all my husband's other allergies, I was reading labels and cooking largely from scratch anyway. The problem was the rest of the world, which didn't understand that allergy sufferers don't always need to ingest the allergen in order to suffer a reaction — often a massive one.

And so my husband's regular Saturday out with our son would be cancelled because while he was riding down the elevator on his way home from work Friday afternoon, someone would open a Snickers bar in that enclosed space. Or a coworker would bring a peanut butter treat into my husband's office and wave it playfully under his nose. If my husband didn't have to go to the hospital right away after such exposures, he usually ended up there a few days later, when a lung infection settled into his weakened system. He carried his inhaler and his EpiPen and protected himself as well as he could.

Of course the whole world couldn't change because my family was now coping with allergies. But we didn't expect our immediate circle to have such a hard time. They didn't have to guess or go online to research the subject: we told them very specifically. No peanuts. Not in the food, not in the room. And yet people we visited maybe once a month, on their invitation, often couldn't manage to be peanut-free for a single afternoon. The idea that we couldn't feel safe with people who cared and really were trying was demoralizing, to say the least.

Which brings us back to homeschooling. My husband's allergies had nothing to do with our decision to homeschool, especially since (thankfully) our son has shown no signs of having any food allergies. But some parents who hadn't considered homeschooling begin to do so when they realize that it may be the best way to keep their allergy-suffering child safe.

For Shannon Nolan, homeschooling was the only possibility:

Our son has anaphylactic food allergies to dairy protein, eggs, peanuts, and tree nuts (contact and sometimes airborne). We started homeschooling to keep him safe. Any child could eat a sandwich, not wash up after, touch my son's desk, and set his allergies off. I've been told by friends who are public school teacher that if he were in their classroom, it would be very difficult to keep him safe since he has such a contact issue.

Erica Adame had to homeschool when her son's school made it clear he wasn't safe there:

My youngest son has asthma, allergies and eczema. The public school neglected to follow the doctor's orders to keep him in from PE if the temperature was 75 degrees or higher. He was not to run or sit close to the heater or air conditioner, and had to avoid all cleaning or room sprays. He also had to take his midday medicine. Too much to ask!

The last straw: On picture day, I received a call that my son needed help due to the teacher having sprayed all the little girls with hairspray. When I talked to her about this, she never seemed to care.

I used this year of homeschooling to teach my son how to manage his health. He is now 11 years old. He receives two allergy shots a week and has a daily medicine schedule to follow. He is much better without the extra exposure to everything.

"We had already decided on homeschooling before we found out about our daughter's peanut allergy," Jennifer Snedeker said, "but the allergies reinforced that decision for us."

Those who are led to homeschooling by children's special needs are often pleasantly surprised by just how much good stuff there is in what once seemed a foreign (and possibly hostile) land. "We would homeschool now even if my kids' allergies went away tomorrow," a previously skeptical friend reported.

But as long as those health issues remain, they're a critical part of the family's homeschooling. If schools can't keep our children safe, the homeschooling community needs to.

Announcing one's needs, especially to a new group, can be difficult. My husband always felt guilty for being the problem child at the party, as it were. It's easier to speak up on behalf of one's children, but it's never fun.

Understanding what it means to be truly hospitable, Wendy tries to be proactive.

I'm running a book club for a group of homeschooled kids (ages 6 - 10), and I'm careful to ask parents about allergies. Generally, I try to avoid preparing anything with common allergens, but I like to be able to accommodate less common allergies as well.

This year, for my daughters' birthday party, I made sure we had gluten-free, casein-free cold cuts; gluten-free cheeses; and a gluten-free, dairy-free cake. I think it's a small effort on my part, and it makes a huge difference to our friends who have to deal with these allergies on a daily basis. How on earth could I let our friends feel left out of the fun?

Janet in Idaho reports that this can be easier than we might expect:

One of the kids in our homeschool co-op is severely allergic to peanuts and wheat. We've outlawed peanut butter altogether on Fridays (when our group meets) and all the families get an email reminder every couple of weeks about snacks and class supplies being allergy-free. We love our little guy and it's not a big deal for the rest of our families to accommodate his allergies. We'd expect our kids' needs to be respected, too. It does make parties interesting since we can't bring a lot of the ready-made treats and candies. I think we've all enjoyed being stretched a little.

And Gina has raised the art of allergy accommodation to a science.

A couple of years ago we were part of a co-op of 6-7 families, half of which had food sensitivities or allergies. At our first organizational meeting, we discussed the allergies and came up with the following policies.

When I taught life science at my house, I always thoroughly washed down my kitchen the night before co-op since we often used the sink and counters in the class. During the months that I taught, I also got into the habit of storing all nuts in the freezer and all nut butters on the top shelf inside a cabinet where the kids wouldn't come in contact with them.

The most important thing we agreed on was a co-op wide nut-free policy. There would be no nuts on the premises or at any of our gatherings. Nor could teachers use nuts as part of their lessons. The kids did have other allergies, like bananas, strawberries and gluten, but these were not as life-threatening so those foods were allowed with caution. Everyone packed their lunches or cooked them there, but separately to avoid any accidental contamination.

I've learned that the most important thing is to have a policy for what to do if a child brings in a food another child is allergic to — because it will happen. You can count on it. We found that the best and easiest solution was to remove the food whenever possible. We kept snacks on hand for when this happened so the child still had plenty to eat. If removing the food isn't practical then the child sat at the far end of the table, or as far away as possible, from the allergic child/ren. The child made minimal contact with the other kids while eating and immediately washed hands and brushed teeth before interacting with the group. One of the adults also thoroughly washed any area that the allergenic food came in contact with. This was also done for foods the kids were tactilely sensitive but not deathly allergic to. The kids were glad to do whatever it took to keep everyone safe. I know it taught my kids how to be sensitive of others' needs.

This kind of cooperation and willingness to do the hard work can make a huge difference to parents and kids who may already be feeling rather isolated by their health issues. Ulrike stressed how important it is to feel that the community cares enough to try to help.

My one piece of advice is ASK! Ask if this food or that is OK to offer to the child. If you're in charge of snacks, ask if there's anything you can bring for that child (if the child's allergies are severe and/or complicated, you'll probably be told that the family will just bring something safe for the child).

My daughter was allergic to dairy, corn, and soy. (She has since outgrown her allergies.) I still remember the first time another homeschooling mom asked me if there was anything she could bring for my daughter. It brought tears to my eyes.

My husband's peanut allergy has gone into remission, but his other allergies still rage on. Because even inhaling an allergen is enough to set him off, I have to time certain kinds of cooking around his schedule. If my son and I are going to make a batch of applesauce or chili, we do it while my husband's at work and make sure to allow plenty of time to air the house out afterwards. If I want to bake brownies or a chocolate cake while the two of them are spending a day out together, I feel as if I'm planning an affair.

We've lived like this for years. And yet here it was: the morning of the first day that a new mom and her son, both of whom suffered from ferocious peanut and tree-nut allergies, would be coming to my local park gathering. The one I'd started, and had tried so hard to make a welcoming place. And I'd just eaten a handful of pistachios.

It was the old nightmare all over again. I took a deep breath. Okay. It was seven in the morning. I was about to work out, shower, wash my hair, scrub my nails, brush my teeth, and put on new clothes, skin to surface. We wouldn't be going to the park until two o'clock. It should be enough.

It was enough. It was fine. We had a great time that afternoon. I hope our new friends did, too. I was thrilled to meet someone who'd not only heard of my favorite poet Christina Rossetti, but read her works aloud when her son was a baby because little kids' books were just too boring. We shared allergy stories and she told me about a new study that suggests, contrary to what we've been told, that avoiding allergens in early childhood is not necessarily the way to keep our children allergy-free. (Sure enough, that very week I read an article in The New Yorker about this research.)

When we were ready to go home, we hugged goodbye. My new friend's son — a boy of four or five — ran up, alarmed. "Mom!" he exclaimed. "You're not supposed to do that, remember?"

"It's okay, honey," she said. "We talked about it. They understand."

"I was really careful," I added, feeling guilty anew at all the mistakes I'd made and almost made that day — the pistachios, the granola bars that had almost landed in our snack sack until I thought to read the labels and remembered not only not to bring them, but to pack our safe food and drinks in a new, clean bag. "I promise I'll always be careful with you."

He looked at me, considering. Then he lunged into a bear hug.

---

Melissa's Story

When Quinn was diagnosed this past summer, my husband and I breathed a big sigh of relief that we had already been homeschooling our older child, Sage, since he was 4. We knew we'd continue on our homeschooling path, and that made things so much easier where our five-year-old newly diagnosed celiac was concerned.

Here's what we do to keep him safe. We have a sign on our front door, laminated and permanent. It reads:

Due to health concerns for our child with celiac disease we ask that upon entering you...

Take off your shoes

and

Immediately wash your hands.

Thank you for helping to keep him healthy!

We do not allow any gluten into our home at all. Ever. I replaced all of my pots, pans, stoneware, wooden utensils, and cast iron. I also replaced all of my appliances — toaster, waffle iron, blender — and when we moved into our new house, I scoured the entire kitchen (cabinets, drawers, etc.) with vinegar and baking soda. I also ran the self-clean option on the oven before I ever used it.

Wherever we go, I keep handy wipes with me. Quinn takes gymnastics, and at every water break, I wipe down his hands. (He comes to me for water. Using the fountain is a no-no. Too many chances for contamination.) My biggest challenge with this is that he's five years old and loves to put his fingers in his mouth. I am constantly reminding him to stop sucking his fingers. And when he gets contaminated, I never know if it's because he's been sucking on his fingers or if the contamination happened some other way. Watching his little gymnastics classmates downing their goldfish crackers before running out on to the mat with him nearly stops my heart. I know that those tiny little crumbs can make him incredibly sick.

We only have one restaurant that we feel safe going to. He has been contaminated too many times for us to trust anyone else. The management knows us really well at our favorite place, and they have bent over backwards to keep him safe. We feel very grateful for that and it is the only place we eat.

He can't have many processed foods, even those labeled gluten-free. So I cook nearly everything from scratch. This is another big challenge because I hate cooking. I would rather do just about anything else. But I do it, because I love my kid.

He also can't take any medications. No Tylenol, no anything. Our doctor agrees that it isn't safe to vaccinate him, so we all just cross our fingers whenever he gets sick. I have a cold right now and I am constantly worried that I'm going to pass it on to him. He gets illnesses three times longer and harder than everyone else in our family. He had H1N1 twice last winter. He was sick for nearly the entire month of December and half of January.

We are also vegan. There's always the risk of contamination in meat products, and Sage, my oldest, is dairy intolerant. As if the gluten-free thing wasn't enough! Well, you just do what ya gotta do.

Children with allergies, intolerances, and diseases are often overlooked. People think we're exaggerating, or they just don't think it's that bad. My mother was one of those people until she saw Quinn get contaminated in person. She couldn't believe it. Her tune completely changed. Now she's one of the only people I'd trust to babysit him in their gluten filled home.

When Quinn gets contaminated, it's like the world stops and all focus is on him. He moans in pain, and screams. His stomach hurts so badly that he can barely stand it. His mood swings when he's contaminated are horrifying. My normally sweet, funny kid turns mean. Yelling, hitting, and even biting. This is truly not who he is; it only happens when he's contaminated. Often he'll have a migraine too. He can't stand light or sound, though he continues to scream because he just can't help it.

Then his entire body will turn the color of pale ashes. That's when I know to get the "throw-up bucket." Suddenly he goes completely limp and can no longer move or make a sound. If I'm not right there, he could easily choke on his own vomit and die because he's too sick even to move his head. I have to lift his limp body up and hold his flopping head over the bucket while he vomits. This will happen a dozen or more times before he's finished. The worst is when the diarrhea is happening at the same time. Try holding up a totally lifeless body on a toilet while he heaves into a bucket and simultaneously has liquid diarrhea. The saddest part to me is that all the while he has tears silently streaming down his cheeks. He is so sick he can't even make a sound as he cries.

It can take anywhere from six to twelve hours for it to exit his system well enough that he can get up and play. But it still isn't over. After he's contaminated with gluten, it wreaks havoc on his system for weeks. He'll have a lot more painful bowel movements and plenty of headaches while his body tries to heal itself. Because he is five years old, he tries his best to play for absolutely as long as he can before he succumbs to the pain. I can watch him and know he's hurting, but he will deny it until he really just can't anymore.

He's my hero.

More about issue #13