When Kids Refused to Go on a Field Trip to Support My Son With Special Needs


A school trip to the zoo is exciting, especially for kids 7- to 8-year-olds.

Except when your son has autism. And sensory issues. And severe attention deficit hyperactivity disorder (ADHD). And severe food allergies. And the list goes on.

My son was excited and wanted to go, but I knew it wouldn’t be a good experience for a number of reasons. It was an hour away, which was too far, especially for a bus ride. Who knew what the weather would be that day? He doesn’t like getting wet, so rain is out. The heat and sun bother him, so that’s out. What was the likelihood of it being 70 degrees and breezy with light clouds on the day of the field trip?

Would he have a good day or would it be one of his bad days? Would he meltdown over the sheer excitement of it? That happens often. He’ll get exhausted and scream before we get into the car sometimes.

What exhibits will we see? Elephants are his favorite land animal. If we don’t see them, he’ll have an instant meltdown. He’s getting bigger, too. I can’t pick him up and whisk him away to comfort and calm him anymore.

My son’s food allergies are significant, too. They have peanuts at the zoo. We avoid peanuts at all costs.

So for these reasons, we declined to go on the field trip. I never thought about contacting the teacher or principal or trying to change the trip. We had declined before, and I didn’t want to ruin the trip for anyone else. While we were asked our feelings about the trip, I never expected any special treatment.

I never expected what happened next either.

A mother had a conversation with her child about my son not going on the field trip. He decided that if my son couldn’t go, he wouldn’t go either. Another soon followed. And then another. They refused to go on the trip in support of my son and their friend.

Was I hearing these moms correctly? Not only were they voicing camaraderie, but they were backing it up, too. And their little kids would rather stay home than go to the zoo? I didn’t even know if these kids talked to my son during the day. They had always been nice to us and supportive behind the scenes. But in the world of special needs, sometimes you never really know how genuine people are or if they’re just being polite.

When you’re raising a child with special needs, sometimes you wonder what the community around you is thinking. Do they say he should be at a special school? Do they say he doesn’t belong? These questions often go unanswered. Until now.

I later heard that the boys in my son’s class had talked about the field trip. At one point, half of the class refused to go.

To say that my husband and I broke down and cried when we heard about this is an understatement. Not only were the parents supporting my child in a way that had never been done before, their children had also been taught to show support, too.

I received a phone call from the principal, who wanted to make the field trip work in any way possible. She was wonderful in her support of my child and wanted to provide any accommodation that would allow for my child to attend.

In the end, we decided that it wasn’t safe due to the food allergy issue. We certainly didn’t want to deny anyone else a trip to the zoo. After all, they may not get another chance.

While most went on the trip, four of us did not. But it’s really not about the field trip. The willingness of the principal to provide any assistance necessary was overwhelming. Her unwavering support of our family is unmatched. The parents who showed us support and their amazing children have become our friends. Good friends. Friends we haven’t had since our child’s diagnosis. Friends who don’t judge. Friends who create special zones at their house for my son if he gets overwhelmed and have special foods he can eat. Friends who ask us how we are and don’t get annoyed if we can’t talk because we’re helping a little boy who’s having a bad day.

An admission ticket can’t buy that.

Tracy Boyarsky Smith the mighty.1-001

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Hospital Makes Special Arrangements for Elderly Couple Who Can’t Take Separation


Tom and Arnisteen Clark, from Fayetteville, Georgia, have hardly been apart from one another in their 68 years of marriage, according to a post on the Piedmont Fayette Hospital’s Facebook page. The only time they were separated was when Tom, an Army veteran, was stationed in Korea.

The couple was recently admitted to the orthopedic surgery floor of the Piedmont Fayette Hospital and it was particularly difficult for them because they had to stay in separate rooms. None of the rooms on that floor are built for double occupancy and so it is against state regulations to house two people in one of the private rooms.

They couldn’t be together,” Charlsie Niemiec, the hospital’s social media specialist, told ABC News, “and it was clearly breaking their hearts.”

Seeing this, Tina Mann, Manager of the Orthopedics floor got help from the clinical staff to make a special arrangement for Tom, 96, to visit his wife, 92, in her room for several hours a day.

I just can’t be away from her,” Tom Clark told hospital staff, according to the Facebook post, “she’s the finest woman in the world.”

Fayetteville residents Tom and Arnisteen Clark have been married for 68 years. The only time they have been apart during...

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The Clarks have both been released and moved to a rehab facility together.

9 Things Not to Say to Someone With an Eating Disorder


For the last six years of my life, I’ve spent more time thinking about food than nearly anything else. For five of those six years, I was in the throes of an eating disorder. Only in the last year have I started to edge back into a remotely healthy diet. In that time, I’ve had lots of people say lots of truly terrible things to me, things that sent my brain spinning merrily back into the labyrinth of restriction.

Most of those people thought they were helping.

So as a service to everyone who knows, meets or interacts with someone with an eating disorder, here’s a guide to what not to say. Even if you’re intentions are good, your first instinct might not be the best when it comes to what to say to someone who discloses their eating disorder to you.

1. “You don’t look sick.”

There are all kinds of eating disorders. Anorexia is one of them, and yes, it does include a weight criterion. However, it’s the only one that does. The vast majority of people with eating disorders are not underweight. So while you might think you’re paying a compliment, or trying to keep them from blowing a problem out of proportion, you’re really just sending the message: Your problem isn’t real.

2. “Maybe if you just exercise more you won’t want to restrict.”

One thing to remember is that people with eating disorders have a wide variety of symptoms. One you won’t see in the media as often is excessive exercise. You could inadvertently be pushing someone into an unhealthy behavior. Beyond that, eating disorders aren’t caused by a logical desire to lose weight. They’re complicated mental illnesses, and “healthy” ways of losing weight just won’t serve the same functions.

3. “Shouldn’t you try eating healthier instead?”

Similarly to exercising, eating healthier foods and losing weight slowly is really not the goal of an eating disorder. The goal is control, self-harm, perfectionism or emotional management. Some folks even have something called orthorexia, meaning healthy eating is a damaging practice.

4. “You look so healthy.”

This one is tough, because for lots of people it seems like it’s circumventing the problem of commenting on someone’s weight. Especially as your friend/loved one starts to move towards recovery, it’s really tempting to comment on how much more alive they look. I can promise you, that most eating disordered brains know this is code for, “You’ve gained weight.” A better choice is to focus on compliments or comments that don’t address weight at all, such as “You seem really happy lately,” or “I’m glad to see you doing your favorite things again.”

5. “Don’t you know you’re hurting yourself?”

Again, this might seem like the kind of question that comes from a place of caring. You want your friend or acquaintance to know  you care about them and you don’t want them to hurt or deprive themselves. The problem is it comes off as condescending. If you’re in the midst of an eating disorder, you’re quite aware you’re damaging your body. I remember stopping to sit down halfway up a flight of stairs because I was too winded. I remember the whole world going blurry and dizzy on a regular basis. I remember sleeping constantly because my body just couldn’t get up and do anymore. My story is not even close to the worst either. Others are hospitalized, pass out, get osteoporosis, break bones or damage their digestive systems. We know we’re hurting ourselves and hearing about it inspires feelings of guilt, confusion and sometimes even a desire to continue hurting yourself.

6. “I was so bad last night, I ate a cupcake. Guess I have to hit the gym.”

Eating is not a moral activity. There are no foods that will make you a bad person or a good person. Skinny people are not better than fat people. Statements like these connect morals to weight or eating, and making those connections makes it that much harder for someone who struggles with food to find a place where they can be comfortable and happy with their diet.

7. “There are so many calories in that!”

In general, it’s good manners to not comment on the calories in anyone else’s food. What other people eat isn’t your business. But one of the biggest problems with encouraging talk about calories is that it can become a habit. When you talk calories around people who already have a strained relationship with food, you can send their brains back to thoughts they would rather leave behind. For some folks, calorie talk is enough to trigger a relapse. Those numbers have an addictive quality for many people with eating disorders and even hearing about them once or twice can start up the counting again.

From this girl in recovery, just leave the calorie chats behind. Count your own calories if that’s your jam, but your food choices are personal and bringing up calories when you don’t know someone else’s relationship with food can be unkind.

8. “You would be prettier if you gained some weight.”

This may seem odd to some people, but eating disorders have little to nothing to do with whether or not other people find the individual’s body attractive. For me personally, I was interested in my own conception of the perfect body and I didn’t care what other people thought. If you want to help someone with an eating disorder build up strong self-esteem, talk to them about something other than their body. Compliments about things they do, the way they think or the kind of person they are — you’re far more likely to leave a lasting impact.

9. “I just want to lose some weight.”

Generally putting your body down or talking about losing weight is a good way to promote a culture of dieting and body dissatisfaction. It can be much better to avoid body talk at all, especially if someone around you experiences body image issues. Talking about losing weight and hearing others talk about losing weight can activate the competitive part of many people with eating disorders, as well as communicate to them that it’s normal to want to lose weight.

These might seem like a lot of rules, but if you want a guiding principle for what you should say to people who struggle with food remember this: they’re overall pretty normal people who want to talk about things other than food. Treat them like that. Ask them what they prefer. The people who have made me cry in relief are the ones who kept treating me like me, and then were straightforward with me when they had a question or concern.

More than anything, keep showing up. It’s easy to isolate yourself when you’re not eating. Because food is so social, restriction is lonely. Say, “Hi,” ask your friend to hang out in non-food related ways and listen if they ask to talk. It makes a world of difference.

When a Jelly Belly Employee Acted Quickly for My Food-Restricted Child


Between the beginning of July 2010 and the end of September 2010, our family ate a diet that was vegetarian, dairy-free, egg-free, soy-free, wheat-free and nut-free. As part of the treatment protocol for my daughter Sammi’s eosinophilic esophagitis, the “six food elimination diet” was supposed to remove the worst potential allergens from her system, hopefully healing her esophagus and giving us the chance to add the offenders back one at a time later until the real culprit was found. The full elimination portion of the diet was just plain awful.

While the rest of us could sneak off and have luxuries such as omelets, almonds and bagels, Sammi was living this diet 100 percent of the time. We did everything we could to make it palatable. We made elaborate fruit salads and learned to cook ridiculously complicated foods. We spent a lot of time at the farmer’s market trying new produce. Our friends and family circled the wagons and did what they could. During all of this, I can only really remember snapshots — the most powerful moments preserved in a visceral feeling of either dread or deep relief.

One of the strongest memories I have of that time, though, was the deep compassion bestowed on us by an employee of the Jelly Belly Candy Company. As a special treat for our kids, their great aunt had offered to take them on a tour of the Jelly Belly factory about an hour away from home. As luck would have it, Jelly Belly’s jelly beans are free of all the top eight allergens**, which I confirmed on the phone before they left.

They had a wonderful time at Jelly Belly headquarters and came home with souvenirs and, unsurprisingly, mountains of jelly beans. It was a moment of normalcy in a totally abnormal summer. And then, I read the words on the side of one of the bags of candy they’d eaten on the tour: Produced on shared equipment with peanuts.

I can’t overstate the panic I felt. Even though Sammi would not get sick from this, it meant the previous four weeks of her strict diet had been in vain. This excursion fell nearly at the end of the first six weeks of the diet, after which Sammi would have an endoscopy and then be given permission to take a short break from restriction to go on a family trip we’d been planning for more than a year. This possible cross-contamination debacle would force us to cancel that trip and start the six weeks of her diet from zero.

I went into a tailspin, grasping at anything I could imagine. I called the Jelly Belly factory again, horrified and furious and devastated all at once. What happened after that is best described in this excerpt from the letter I sent to the Vice President of Marketing for Jelly Belly.

“…I made a frantic call to Jelly Belly to see if perhaps the bags had been mislabeled. Kit McCoy called me back right away and immediately set to work checking lot numbers, rechecking with the production facilities and calling me several times that day to update me on her progress. While she did that, I steeled myself for the possibility that, because we may have contaminated my daughter’s system with peanuts, we would have to postpone her endoscopy and cancel a family vacation we had been planning for over a year. Our window of opportunity for making this decision was very narrow.

“Imagine my relief when Kit contacted me that very day to give me the news that the bags of Jelly Bellies that my daughter had eaten were simply “old film” – the beans inside were produced without any offending allergens. Kit’s quick research saved us an additional month of restricted diet, the loss of our long-planned vacation and tremendous heartache. She deserves your praise and any commendation you can give her!”

I don’t know anything about Kit McCoy. I don’t know if she understands what she did for us, but I’ll say this: Without Kit McCoy, and her compassion, we would have lost this moment below during our vacation three weeks later:

Debi Lewis the mighty.1-001

And more than that, I would have lost time, faith and so much energy on recreating what we’d done all over again. Kit McCoy, wherever you are, you gave us time. You gave us space. You gave us hope.

Thank you.

** NOTE ON ALLERGENS: The elimination diet protocol our family followed required only that we avoid foods prepared on shared equipment with the foods our child was avoiding. Jelly Belly does share a facility with foods that include tree nuts. Also, while coconut was considered a fruit by our doctors, some consider it a nut. Certain Jelly Belly candies do contain coconut. For more information about allergens, read the Jelly Belly FAQs or call 1-800 -522-3267 and talk to a Jelly Belly representative.

Follow this journey on Swallow, My Sunshine.

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To the Potential Guardians of Our Son With Special Needs


We would like to ask you to be our son’s guardians in the event something happens to us. You can definitely decline if you so choose, but before you decide, we’d like to tell you what you would be getting yourselves into.

Caring for him isn’t an easy task and can often be exhausting. There will be sleepless nights, hectic days and moments filled with so much worry and anxiety that you might succumb to tears in your room. The nights of interrupted sleep won’t lead to a nap the following day. You’ll still need to chauffeur him to therapy appointments and take mental notes of new exercises to perform on him throughout the week. You won’t be able to rest when and if he decides to nap for you. There will be appointments to coordinate, food to blend, social workers to call and insurance companies to follow up with. Oh, and let’s not forget housework, laundry, other children and your social life that is virtually nonexistent.

There may also be days when you don’t take a shower and, quite possibly, may be wearing the same clothes from the previous day. At 3 p.m., you might realize you haven’t brushed your hair or your teeth yet. You’ll pray no one notices.

Speaking of praying, I believe you will also become close to God, Jesus Christ or any other higher power of your choice; you’re going to need it. I believe praying for health and healing will become a daily ritual, and sometimes begging for the strength to get through another day will be top of your prayer list.

You’ll also need to be strong and brave. Strong enough not to get upset at someone who stares at him or whispers and points in your direction. Brave enough to hold your head high and not let anyone pity you or him. Strong, brave and proud are definitely requirements. You’ll need to be proud of this little boy for who he is and embrace all of him.

Melissa Schlemmer the mighty.2-001

You will be required to celebrate every accomplishment he makes. He has yet to sit on his own or utter a word, but you better believe that when he does, there will be a large party in his honor.

Get ready to be patient because progress can be slow. But you’ll marvel at how he continues to work hard with fierce determination and never gives up. The challenges he faces might bring the most heartache, but he’s the ultimate source of happiness. When he smiles, you will feel so much joy. I believe there’s definitely a piece of heaven in his smile.

He smiles with his entire being and means it. There’s no faking it with him. When he laughs, you will forget all of your worries, and I believe you will thank God for that moment. You’ll set aside your list of “wants” and simply be thankful.

He loves unconditionally and without expectations, and that is what we require of you. Hug him, kiss him, cheer him on, never give up and love him beyond measure.

This may be the greatest challenge of your life and one that you would never regret. You’ll learn more about yourselves and others than you ever imagined. You’ll learn what it truly means to love and be loved. Unfortunately, you’ll also become familiar with disappointment and grief, but his smile will trump that any day.

This may be one of the greatest responsibilities anyone will ever request of you. And in our eyes, it’s also the utmost gift.

We can talk about the “package deal” (two big brothers) at another time.

How Jolly Ranchers Help Me Live in a World Full of Food I Can’t Eat


I peel away the wrapping paper to reveal the colorful cardboard box holding my birthday present, a mega box of green apple Jolly Ranchers. I unwrap the slippery plastic wrapper for the hundredth time this week and pop the sticky sweet goodness into my mouth. You’re probably wondering who thought giving a 14-year-old a box of candy as a present was a good idea, but it’s more than just candy to me — it’s my sanity. I know it sounds weird, but when it feels like your genetics betray you and don’t let your organs do their job, like digestion, hard candy becomes a pretty big part of your life.

Picture yourself sitting in a room full of tables and chairs with a hundred other people surrounding you. Everyone is told to sit, so you do. Waiters bring out silver platters covered in tall reflective covers, concealing the origin of an incredible smell. They put the plates down and an array of delicious-looking food is revealed. You look down the line and see everyone is excited about what was put in front of them, it is everyone’s favorite meal. This has to be some sort of heavenly dream for everyone else, but for you it’s some sort of nightmare. Imagine sitting in front of food you so desperately want each and every day, and you just can’t have it.

You are surrounded by a world advertising this “incredible experience.” Food is ingrained in our society, and for a good reason, too; if it weren’t, all you food-consuming mammals wouldn’t be here today. What people might not realize is that eating is a part of every aspect of our culture: you go to a party and there’s food, go out with friends and there’s food, you go to the movies and there’s food, go to a carnival and there’s food and you get together for Christmas and there’s food. And for Pete’s sake, there’s Thanksgiving, a holiday that’s supposed to make us think about what we are thankful for and appreciate all that we have, but instead most people just stuff their faces with food and stare aimlessly at the TV watching football.

Commercial after commercial is about food. “All you can eat” this and “finger-licking good” that. I’ve stopped watching regular TV for the most part for exactly this reason, but for the sake of research I watched primetime TV for an entire hour recently and about 60 percent of commercials that hour were for a restaurant or somehow related to food. Driving down the highway, BOOM, a million food billboards and signs for food at the next exit. There’s no escaping the vivid pictures of the juicy, greasy food I cannot eat. And the last thing I want to hear on my Pandora during the ride to the hospital is a commercial telling me to drop everything and drive to the nearest fast food place to try some burger or fries I can’t even smell without gagging, let alone eat.

My bag of candy is the only way I can survive sitting at meals. At parties, I have my pack of Ice Breakers; at Thanksgiving, I couldn’t get by without my pie-flavored gum and apple Dum Dums; and at birthdays I have my trusty birthday cake gum. Sounds great, right? Candy for breakfast, lunch and dinner — every kid’s dream. But what about when I start to get tired of the sweet flavors of Jolly Ranchers, and I can no longer ignore the more than slight chemically taste of the artificial gum? Most people can just put down the candy and go eat a cheeseburger. I can’t.

Sometimes my green apple Jolly Rancher can’t help. I don’t really sit down with my family for meals, and I don’t go out with friends if I know the night will revolve around food. I make it work for the important parties and events for holidays and birthdays, but the rest I have to learn to let go. I have better things I could be doing than eating; with my feeding tubes and central line I can eat, drink, talk and walk all at the same time. I could be learning Mandarin, or training to be an undercover CIA spy or heck, finding out the key to the universe.

My green apple Jolly Ranchers really do pull me through, most of the time. If it weren’t for them, I would’ve spent many birthdays and school events wishing I could taste something. Even though they can only help so much, my candy means I can be more comfortable around people that are eating. A green apple Jolly Rancher is so much more than another sugary snack; it truly is my sanity.

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