Tuesday, August 18, 2015

Empathy and enjoyment at our local library

The big smile on my son’s face as he bounded out of the library said it all: The Minecraft Teen Lock-in was a success. Like many other kids, Joseph loves playing Minecraft, so it’s no surprise that he would enjoy a two-hour event focused on the game. After all, he had been attending the Minecraft club and Minecraft directors club at our local library at least a couple of times a month throughout the year. But when he first heard about this event, he considered not attending.

Joseph assumed the event would include food. There have been times at other locations when food has made Joseph feel unsafe or excluded at an event because of his multiple food allergies to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, watermelon, strawberry and cantaloupe. That anxious feeling when other kids are eating unsafe food around him undermines the fun. This time, he didn’t have to worry.

In addition to planning amazing programs for teens throughout the year, Nicole, the youth services programming coordinator at the Pawling Free Library, has been wonderful about ensuring that any event Joseph attends is safe for him in light of his food allergies. Food is not part of most of the programs Joseph attends anyway because they mostly revolve around computers. But when food has come into play, Nicole has taken Joseph's needs into account, for example making sure to only bring the brand of chips that Joseph could have when she was having snacks at the end of one session.

The Minecraft event was no different. Nicole assured Joseph that there would only be snacks that are safe for him. She even offered to get all safe ingredients and make cupcakes that would be fine for Joseph. My comfort level is to make the cupcakes for the event myself, but I thanked her for being so willing to go the extra mile to accommodate Joseph. When I explained to her that her empathy for my 12-year-old and her efforts to ensure that he could safely enjoy an event is so appreciated because that is not what we often experienced, she was incredulous. She wondered, how could people think that the type of food at an event is more important than a kid’s enjoyment and well being?

I am so happy to have found such support for Joseph at one of my favorite places. The library has always been an integral part of my life and it continues to be for my family. The library was one of the first places we visited as we got acquainted with our new town after moving here a year ago. The books lining the library shelves were a comfort to us, wrapping us in a familiarity when everything was so different. Both of my children are voracious readers, so they would have loved the library just because it held so many experiences and worlds for them to explore safely between the covers of both well-worn and brand-new books. But the friendly faces that greet us each day when we enter, the help we know we can count on to find just the book, and the amazing programs that both of my children continue to enjoy make the Pawling Free Library extra special. In addition to Minecraft club, Joseph has taken classes in computer programming and 3D printing, worked on the library teen newsroom, and created a blog, "Pancake Domination". Pamela, 7, has enjoyed book clubs, craft activities and learning to sew, in addition to finding her wonderful Girl Scouts troop through one of the programs.

I felt so blessed as I decorated the Minecraft cupcakes for the teen lock-in. I have probably made thousands of allergy-friendly cupcakes during the past 12 years and it is especially gratifying to make them for an event that involves someone like Nicole, who has been so supportive. Joseph said that he had a blast at the Minecraft event, noting that he could enjoy his favorite part — playing Minecraft — because he didn’t have to worry about the food.

Tuesday, August 4, 2015

Some summer fruits not so super anymore

I put out bowls of cut-up cantaloupe with warm, homemade chocolate chip cookies just as my husband and son were pulling up. My son was having a rough day, so I thought it would be nice to surprise him with his favorite cookies and fresh cantaloupe to cheer him up a little when he got home from an appointment. Well, that was a major fail.

As soon as Joseph started eating the cantaloupe, he looked at me in fear. He said his mouth was feeling extra itchy and his lips felt funny. Then he realized it was the same way he felt when his mouth and throat got itchy after eating strawberries a year ago. He has also reacted in the same way to watermelon.

The reaction to these fruits is different than the more serious, life-threatening anaphylaxis that Joseph, 12, has experienced with other foods to which he is allergic. Instead the fruits on his list of allergies are part of his Oral Allergy Syndrome (OAS), common in pollen allergy sufferers, especially those allergic to birch, ragweed and grass pollens. A reaction occurs when “the immune system treats proteins similar to those in pollen that are sometimes found in fruits or vegetables the same way. This ‘cross-reactivity’ is a result of the immune system recognizing that the proteins in these foods are similar (although not exact) and an allergic reaction is the result,” according to the Asthma and Allergy Foundation of America (AAFA).

Each allergic reaction is unique, even for the same person to the same food. There’s no guarantee that the next reaction won’t be more serious, even with OAS. While most OAS patients suffer itchy mouth, scratchy throat or hives, there are patients for whom an anaphylactic reaction to those foods is possible, according AAFA.

Although OAS is usually considered less severe, it does not take away the fear when he bites into a food that previously was safe for him to eat and his body starts to react. At the moment he starts feeling the tingling in his mouth and throat, he doesn’t know whether this food will send his body into an anaphylactic reaction. All he knows is it doesn’t feel right.

Once the fear of a larger reaction passed, the disappointment set in. Cantaloupe is yet another food that Joseph now must avoid, in addition to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, watermelon and strawberries. His list of food allergies seems to keep growing and the fruits that have been added in the past few years as part of OAS are in some ways tougher for him to accept. He has enjoyed those fruits before so he knows what he’s missing, unlike the other allergens that he never had. He’s never tasted a hot slice of pizza from the local pizzeria, a peanut butter and jelly sandwich or a treat from the ice cream truck. But homemade strawberry shortcake? Yes, that he will miss.
As I looked at all of the fabulous ways people are using watermelon on National Watermelon Day yesterday, I was reminded of a blog post I wrote five years ago titled “Watermelon Smiles” . In that post I heralded the joys of the juicy, sweet fruit as a wonderful, natural allergy-friendly food. Well, the salad I mentioned making so often back then had three fruits that Joseph can no longer eat.

The bounty of fruits available during the summer has lost a little bit of luster as Joseph looks at each fresh fruit as a possible OAS offender that might join his growing list of allergies. Still, there are still plenty of fresh vegetables and fruits that he enjoys, and Joseph always uses his wonderful sense of humor to put a witty spin on any disappointment. But the next time I want to give him a treat to lift his spirits, perhaps I’ll just stick to his favorite homemade chocolate chip cookies.