Tuesday, January 25, 2011

Ten things Joseph wishes people understood

Joseph looked up from my laptop with tears in his eyes. He took a deep breath and told me, "I feel like I'm the only one sometimes." That item in the list from AllergyMoms.com founder and life coach Gina Clowes' new ebook "Ten Things Children with Food Allergies Want You to Know" resonated the most with my son. He noted that none of his closest friends or members of our immediate family have food allergies and sometimes that makes him feel left out.

We always point out when anyone successful or famous has food allergies, Joseph reads books that feature characters or real people with food allergies and he loves listening to Kyle Dine's music about food allergies. Our local support group NC FACES also is a wonderful way for Joseph to spend time with other kids who also must avoid allergens. But it's true, that isn't the same as having a really close buddy dealing with the same issues and emotions that come with food allergies.

One of those feelings is sadness. Joseph nodded right along when Clowes mentioned in her list feeling sad and left out at birthday celebrations while everyone else is digging into the birthday cake. He knows staying alive is more important than trying even a tiny bite of cake at a party, and he truly enjoys helping to make and decorate the cake slice or cupcake he brings to special occasions. But that doesn't erase the feelings that crop up with the isolation.

Another common emotion that Clowes addresses is fear — both the child's and the parents' fears about dying from an allergic reaction. Joseph's tears started flowing again when he talked about how scared he gets when he thinks about having a life-threatening reaction. He doesn't remember much about his anaphylactic reaction to a sip of milk when he was 21/2. But I certainly remember my own fear as I watched my little boy go from moving his tongue funny, to crying, vomiting and struggling for air within a couple minutes. I will never forget jabbing the EpiPen into his thigh and rushing to the hospital, where he needed more epinephrine, oxygen, steroids and other medication during an overnight stay to combat the anaphylaxis.

Those fears are valid. The reality is that food allergies have tragically ended too many lives. The ebook's forward by Sara Shannon, whose 13-year-old daughter Sabrina died from an allergic reaction to a trace of dairy, is testament to the seriousness of food allergies.

I think it's important for Joseph to talk about his fears, but we also don't dwell on them. We focus on what he can enjoy and do everything we can to keep him safe. It's those efforts to help him avoid peanuts, tree nuts, wheat, milk, egg and soy that sometimes bring misunderstandings, insensitive comments, judgmental stares and isolation from others. Perhaps Clowes' ebook will help more people understand how food-allergic children feel, what steps are necessary to maintain their safety and why those steps are necessary.

It also provides support and advice. The explanations about each of the 10 things listed could help parents who wish they knew how to succinctly explain reasons they take certain cautions to avoid cross-contamination or other contact with allergens. For example, it's nothing personal when we ask you not to kiss our child on the face after you have eaten food that is unsafe for him, it's just that your sign of affection could cause him to break out in itchy spots. Each chapter provides a statement from a child's point of view, along with "What you should know" and "How you can help" sections.

Joseph and I wiped our tears and had a good hug after reading Clowes' ebook. I hope that the more people understand the voices her book represents, the fewer tears children like my son will need to shed.

Click on Ten Things Children with Food Allergies Want You to Know for information about the ebook and the related teleseminar Clowes is hosting on Thursday, Jan. 27 at 7 p.m. eastern time.

Friday, January 21, 2011

Cookbook contentment

This morning my children were lounging on the floor, surrounded by sweets. The peanut butter and jelly cupcakes disgusted Joseph, but the extremely tall frosting on the strawberry cupcakes had his mouth watering. Pamela was excited to see chocolate chunk cookies and loved how the heart-shaped chocolates looked.

Not to worry, I was not taking my kids along on an early sugar binge, nor was I letting my severely food-allergic son near unsafe foods. We simply were perusing piles of cookbooks. I have always loved cookbooks and have a bookcase full of various genres that reflect the different stages of my life. There are books from the 1970s that my mom once consulted; recipe collections from B&Bs my husband and I visited; a Penn State University tailgating cookbook; several holiday-themed selections; a shelf full of dessert temptations; recipes for low-fat cooking; big books full of Italian recipes; and allergen-free cookbooks. So, it is no surprise that my kids also enjoy flipping through the pages, especially of the dessert books.

When Joseph, 7, was first diagnosed with life-threatening allergies to peanuts, tree nuts, wheat, milk, egg and soy, many of those cookbooks started collecting dust. At 9 months old, Joseph didn't need much food yet anyway. But it was more because my focus was on making the house a safe place for him and on finding foods he could safely eat. Looking at many of those books full of foods that could make him sick or even end his life disgusted me. I was frustrated, too, because every recipe called for at least one allergen he had to avoid.

But as I became more confident cooking for my son's allergen-free diet, I saw those books for their potential. So did Joseph. A few years ago, he collected photos of sweet treats that he had cut out from magazines, catalogs and the little cookbooks that are sold at the grocery store checkout line. It didn't bother him that he couldn't have the actual food in the photo because he knew we would find a way to make our own Joseph-safe version.

Most recipes I follow require some type of ingredient substitution — even allergy-friendly recipes often include something Joseph is allergic to or doesn't like. But that's OK. I know how to substitute and now, I relish the challenge. My family is used to my explanation that I had to "punt" because I didn't have an ingredient or that I wasn't sure what I did to make something taste so great. I love putting my creativity to work in the kitchen and I love having all those cookbooks to give me ideas. I'm especially thankful for the wonderful allergy-friendly cookbooks and websites now available to provide safe ideas.

We didn't make any of the treats Pamela and Joseph spotted today — we actually were supposed to be looking for a biscuit recipe. But I'm sure we will be turning back to at least one of those pages to make our own tasty version soon.

Sunday, January 16, 2011

Having a ball with sandwich bread

Today at lunch, my 7-year-old son Joseph was thrilled to add another item to the list of things he has in common with his Dada. Those two are best buddies and already share many traits and interests. But their favorite food choices are not always in sync, especially when we factor in Joseph's allergies to peanuts, tree nuts, wheat, milk, egg and soy. But when Joseph bit into his big meatball sandwich, he happily told my husband it was yummy before chomping down for another bite.

One of my husband Gary's childhood nicknames was "meatball" because it was a favorite lunch choice that his schoolmates could see him pull out of his lunch bag. Flimsy little sandwiches were not an acceptable choice for little Gary to bring from his mom's Italian kitchen and he certainly had no complaints. Joseph has heard Gary's stories about his big meatball sandwiches and the accompanying nickname, so he knew he was tapping into something good with his own sandwich.

Sure, I often make meatballs. My turkey meatballs packed with grated zucchini and carrot, and applesauce are a family favorite. The beef version (with the same ingredients plus Daiya dairy-free mozzarella style shreds) also is a hit. But a great gluten-free sandwich bread has eluded me. Until now. I have a go-to gluten-free bread recipe that has worked fine for years. But it is not the right consistency for sandwiches and every mix I had tried in the past didn't work well using egg and milk substitutes. They were too dense, too dry or just didn't taste good. But a few months ago I tried King Arthur Flour gluten-free bread mix and it is fabulous! It has a great texture, it rises nicely and it tastes wonderful. We all love it for dipping in stew, making toast and finally, for making sandwiches.

Joseph is thrilled to have safe, tasty bread that can be used for sandwiches. And it is a savory bonus that he and "Meatball" can compare lunches.