What My Son Taught Me About Food Allergy Awareness: Think “A-E-I-O-U”

Mothernova FARE walk site

This has been a huge month for food allergy advocates with President Obama’s signing of H.R. 2094: The School Access to Emergency Epinephrine Act, which provides key incentives for schools to prepare for severe allergic reactions. This law is a good first step and, looking at everyone’s reaction to it, shows how important awareness is in making strides to keep our children with food allergies safe.

For my family, the Food Allergy Research & Education walk to “say FAREwell” to food allergies also was a huge milestone. When we signed up to participate in FARE’s event, I had two “C’s” on my mind: community and charity. But I walked away with much more.

With back-to-school planning, play dates, holiday parties, and so many fall events that require ensuring awareness about food allergies, I’d forgotten to focus on the awareness of the most important person: my son. Sharing food allergy awareness with others is so important, but awareness is just as important–if not more important–for our children who have the food allergies.

After learning an invaluable lesson at the FARE walk, I’ve started thinking about food allergy awareness in terms of A-E-I-O-U: Awareness, Education, Inclusion, Outreach and Understanding.

Each value is so important and relies on the others to achieve our three primary goals: the safety, health, and happiness of our children.

Awareness

My family and I registered to participate in FARE’s walk in large part because FARE supports the research of Dr. Robert A. Wood, the chief pediatric allergist at Johns Hopkins Children’s Center. Wood, an internationally recognized food allergy expert, is amazing to say the least and has helped my family and many others during our journey of managing food allergies. FARE also has been instrumental in educating me. So I really wanted to give back and continue to support them.

What we came back with was more than I expected. You could say it was life-changing–for my son.

It was an unseasonably hot day for October, the kind where we walked briskly to the vendors just to get some shade. Before leaving for the walk, a certain other child of mine had one of her bouts of reflux, as evidenced by my clothes. So we were running late. She was not happy. Should we go? Well, I was determined. I’m so glad I was.

Mothernova at FARE walkIt turned out we got there just in time. It was a hot walk but a gorgeous, sunny day. The leaves were changing colors. Families were on the move. I could feel a sense of purpose and excitement in the air.

We lingered a bit behind everyone, making sure my son didn’t get too tired. At the end, we visited the vendors, eagerly picking up Enjoy Life snacks, talking with the Auvi-Q and EpiPen reps, and picking up coupons for each.

One mom in particular introduced herself to us, asking what our allergies are. Her son and my son exchanged hellos as her son ran off to the bouncy house with his sister.

The heat finally got to us, so we made our way back to the car. As I was buckling up my son in his car seat, I told him how proud I was of him that he walked with us. What a big boy! I asked him how he was feeling (which I often do due to his food allergies). But this time his answer was different.

“Good,” he said. “There were a lot of people!”

“Yes,” I said. “You know, the kids out there and some of their parents have food allergies, just like we do.”

Looking at me resignedly, he said, “Well, not like me.”

Taken aback that he thought this way, I quickly said, “Oh yes, the kids we met today have food allergies, just like you, sweetie.”

“Yeah,” he continued, “but not just like me. Not the same ones.”

“Yes,” I said. “Some even have more, unfortunately.”

“What? Really?” His eyes looked up at me, wide and questioning. I could see his curiosity, as well as a sense of comfort, inclusion, and a heightened awareness spreading across his little face.

“Oh yes,” I said, explaining more about the walk and taking time to elaborate.

As we pulled away from the park, I could feel myself tearing up a bit, realizing I’ve been so concerned lately with ensuring parents, friends, and teachers without food allergies are educated and aware that I didn’t realize I need to make sure my son’s level of awareness is such that he realizes he is certainly not alone.

For days after the walk, and even just yesterday, he still talks about all of the other kids he saw at the walk, and that they all have allergies too.

Education

Education is perhaps the most important part of awareness. We need to be armed with knowledge. Without it, we may unknowingly expose a child to a food allergen. You cross the line from safe into unsafe. After my son was diagnosed with his food allergies at 10 months old, we set out on our journey by researching as much as we could.

FAREKids With Food Allergies, and Loudoun Allergy Network continue to be instrumental in our education. Another website that I’ve started to rely on is AllergyHome.org. I also attend conferences whenever I can. I still learn something new every time I hear someone like Dr. Wood speak.

 We are all living with or near a child or an adult with food allergies. We never know when we may be called upon to act, whether it be by ensuring they don’t eat a certain food, or by acting quickly to give them epinephrine if they are experiencing an anaphylactic reaction.

Inclusion

As we prepare for kindergarten, I’m realizing the importance of one word: inclusion. Just knowing he wasn’t alone really changed my son’s outlook. I know that unfortunately his sense of inclusion will be tested again and again as he enters elementary school, middle school, and beyond.

I hope his sense of inclusion only grows.

Schools play such an important role in ensuring our children with food allergies feel included, in keeping them safe, and in spreading awareness and education.

There are also steps parents can take to help ensure their kids are safe and included, such as Individualized Health Care Plans (IHCP) and Section 504 plans. Section 504 of the Rehabilitation Act of 1973 is a civil rights law that safeguards those with disabilities from discrimination and ensures equal access to education.

I pray my son and all children with food allergies always feel included. I will do everything in my power to help make this happen.

I continue to read stories about misunderstandings and bumps in the road, some little, some huge.

 Step by step, we are making sure our children are safe–and included!

Outreach and Understanding

A huge part of spreading awareness is outreach. I’ve learned over the past five years that reaching out to others and sharing what I’ve learned is sometimes the only way they will know and understand what my son’s allergies are and what we are going through.

I’ve met quite a few speed bumps along the way, but knowing I’m keeping my son safe and doing the best for him makes it easier.

That being said, I struggle pretty much every day with just how much information to give people, when to try to make changes, when to put my foot down. You do have to choose your battles.

Inclusion unfortunately sometimes gets pushed aside for immediate safety concerns. In a perfect world this wouldn’t happen, of course. It shows me I really need to plan ahead to predict hurdles that may pop up so both safety and inclusion can be achieved.

But at the end of the day, if there is any question about my child’s safety, “no” is my answer.

I don’t mess around. It’s pretty black and white when it comes to safety.

As time passes, I hope these five pillars of “A-E-I-O-U” will continue to increase so keeping events allergy-friendly will be second nature to everyone. Hopefully. Last week’s signing of what I think of as the epinephrine access law is a good first step, but more needs to be done.

Until then, in my own little way from our own little corner of the world, we work to increase awareness, education, inclusion, outreach, and understanding every single day.

Food Allergy Research & Education (FARE) is a nonprofit organization that provides advocacy and education on behalf of individuals with food allergies. I recently wrote a series of special reports on FARE’s 2013 annual conference. For more information about FARE, please visit their website at http://www.foodallergy.org/.

How do you work to ensure your child feels included? What are your experiences with the “A-E-I-O-U” pillars? Please share your stories so we can learn from you and continue to spread awareness!

 

One Response to “What My Son Taught Me About Food Allergy Awareness: Think “A-E-I-O-U””
  1. Desiree DeNourie

    It is amazing how a child with food allergies has what I can describe as an “Ah Ha” moment. I remember when my son first asked me if people can be allergic to things he wasn’t allergic to. When I told him many people are, it took a moment to sink in, then he would say, “oh, so they can’t eat this, or that….but…I can.” He realized he wasn’t alone, and there were many people like him, just a little different.