Building Self-Advocates: One Family’s Perspective on Growing Up with Food Allergies

Food allergy families often deal with managing a food allergy diagnosis from a young age. As children grow, families are faced with making transitions through childhood and into adulthood. Managing food allergies can be scary and studies show that families and children with food allergies often have a lower quality of life. Here’s one family’s story of navigating life where four of the five people in the household have food allergies. This is a look into how parents and kids can be empowered to safely manage the condition of food allergies and enjoy life to the fullest.

We spoke with Kristin Osborne, a native of Virginia and a certified disability advocate for those with developmental disabilities, food allergies and anaphylaxis. She is the founder of Virginia Food Allergy Advocates and is vice president of education for the Food Allergy and Anaphylaxis Connection Team (FAACT) in addition to serving on FAACT’s Diversity, Equity and Inclusion Advisory Board.

NPB: Tell us a little bit about yourself and your family and your experience with food allergies.

KO: Our experience with food allergies goes back almost two decades. My husband has a food allergy, and my three sons, ages nine, 14 and 19, all have multiple life-threatening food allergies. Life is different now than it was  20 years ago. It has been a journey, to say the least; some good days, some not so great days. And some empowering days when you see that your child knows exactly what’s needed of them and they take the reins and lead and you follow. That’s a really nice feeling, as a parent, to know that you’ve taught them everything they need to know, and then they go out and effectively advocate for themselves.

NPB: Can you talk a little bit more about how food allergies have impacted your family over the years?

KO: It added up to a lot of money at one point, and also mental fatigue. It definitely impacted our day-to-day life, but we were determined not to let it define us.

We’ve really wanted to make sure that we took every opportunity to include the kids in everything that we did and to create memories that we all would laugh about. Instead of treats for birthday parties, when my kids were in school, I would bring non-food treats like bags with pencils and stickers and all kinds of tattoos or other fun things that the kids like. Then I would add if there were allergies in the class, we’d discuss doing popsicles, something that’s a little different, but I always tell parents there’s always a workaround.

There’s never been anything that I haven’t been able to work around. That’s kind of the philosophy we’ve had as a family and the philosophy that I wanted to impart on the kids. As they get older, I want them to know that food allergies are part of their life, but it doesn’t define who they are. If they take that, then they can do anything that they’d like to do, and won’t let food allergies impact them negatively.

NPB: How do expectations for allergy management change from when a child is in kindergarten through middle and high school?

KO: When you start with the kid as early as a diagnosis, I always make sure that my children felt part of the solution. We talked about food allergies. Obviously, we have conversations about what’s safe, what isn’t safe. When they’re younger, we worked on reading and teaching. My kids’ first words they were reading were peanut, wheat, dairy, egg. These are things that we taught so they would understand how to read a label and look over words and know whether or not something was safe for them. You want to encourage the children to be a part of the process because, ultimately, when they’re a part of the process, they have a stake in the decisions that are made.

Schools that receive federal funds, such as public schools, must adhere to the Americans with Disabilities Act. Because food allergies can qualify as a disability, students can get a 504 plan to help create a legally binding plan for managing food allergies at school. When there are accommodations that are made, I always include my kids and ask, what would they think? If we’re talking about sitting with friends at the table, what would be a safe option? Are we thinking maybe a separate table, or are we thinking an empty seat on either side of the child? So there are a lot of different things that you can do to involve the child. I also make sure when we’re in the kitchen and we’re cooking, I ask for their input, “What should we make? There’s this recipe that includes this ingredient. How do we make this recipe with or without said ingredient? How can we do that?”

Some of the other things we’ve done were to make sure that they were comfortable explaining their allergens to other people. Make sure they’re comfortable with talking about it. If they weren’t, we would do role playing, “Hey, my friend Johnny is eating something that maybe I can’t eat. What do we do?” I still do that with my children, even my 19 year old, we do role playing, “Hey, I’m going to go out with my friends. Your friend says, ‘Hey, I don’t want this, or I need to do this.’ What do you say?'” Because a lot of times kids just don’t know what to say sometimes. They need those words to be able to lean on, to empower them to advocate for themselves.

NPB: What advice do you have for food allergy parents who really are in these significant periods of transition with their child? Are there any particular resources that you found helpful?

KO: My advice for parents who are in this transition period is that life may seem uncertain, but there’s light at the end of the tunnel. There are many different resources that you can consult to provide education, advocacy and the help that you need to navigate every day. One of those resources is FAACT’s website. They have an amazing library with all kinds of information, downloadable resources for parents, schools, grandparents or other family members to understand what it means to have a food allergy, understand what it means to recognize an anaphylactic reaction, those kinds of things.

It’s very important to reach out and have a community of people. I have community of friends that have ridden the wave of our food allergy journey with us. And whether it be someone locally or through a local support group or a support group online, it’s important to be able to have someone that you can bounce ideas off of or glean information from who’s been there and done that.

Being diagnosed with a food allergy can seem like life is going to change. Life is going to change, but there are so many silver linings—like empathy, independence and close relationships with trusted family and friends—that you can find to navigate your new normal.