She remembers that I didn’t really like going to school and I really didn’t like lunchtime. It was not okay. She spoke with the principal, she was an advocate, and they worked out a better solution. I do remember my mom calling the school nutrition services to find out what was for lunch and ingredients. It was really hard; they weren’t getting back to us. My mom would call twice a week and it took forever to find out. So, we had to pack a lunch a lot of times.
For trick-or-treating in my old neighborhood, we had our route and everyone in the neighborhood normally had a special bag set out just for me, full of things that I could have. It felt good not to have to worry about it. But I was still able to sort through everything at the end of the night and take out anything with nuts, if I were to get something I couldn’t have.
Was candy the biggest deal about celebrating, if not, what made it so fun?
Oh no, not at all. Our family or our neighbors were the places everybody would get together and hang out. We would have a bonfire and play games in the backyard. That was the best part.
If you could talk to your 8-year old self, what advice would you give, knowing what you know now and have lived through?
I just kind of knew what I couldn't have, and it was all right not taking a treat. Or making it known that I have a nut allergy and people would switch something out. I would reassure my younger self that people are going to be looking out for me and want me to feel included.
Food allergies can be on a spectrum of mild to severe. Are there things that you would want people to know about what your life is like navigating your allergy?
You're a lot more aware of your surroundings when navigating life; what you're eating and washing your hands [to be sure they are free of any nut or soy residue].
Going out to eat at a restaurant, I have a couple things that are generally always safe and so I’m always getting those. For me, it’s a cheeseburger and fries. But I don’t always know if I can have the bun, so I bring my own bun and then swap it out. I got used to doing that. Of course, there are some food items I would have like to try [and they appear to be without nuts or soy], but if the restaurant doesn’t know or doesn’t have the food label, I can’t have it.
I also have to keep an EpiPen on me all of the time. I don’t go anywhere without it. Or if I do forget it, I turn around and get it.
I’ve grown up with it my entire life, so I’m kind of used to it, but I understand that people without allergies could have a hard time knowing what it’s like. With food allergies, you never get a break or vacation from it.
I have a question for your mom, Stephanie. As a parent, what would you say to other families who have a young child with food allergies?
Continue to advocate, advocate, advocate! Be at the table. Be at school board meetings and wellness meetings to make sure that what they're doing it is inclusive. There's often a better solution than just having a kid sit by himself, right? How can we figure this out? That's what I did. And I think you just have to.
I didn't realize how much of an advocate I was, but I needed to be for Carter and his allergies. He also has dyslexia and so I was advocating to ensure he had what he needed at school in that realm as well. I was probably never really an advocate for anything before, but this was such a passion. I would just say to parents: keep making sure that that your kid can be included. There's always a solution. There's always a way. You might just have to talk with a lot of people in whatever situation to figure out what or how you can work around it so all kids can be safe, and all kids can be included.
It does take a lot of time sometimes. It takes a lot of talking and sometimes you’re going to hear, “why should my kid have to suffer without peanut butter?” It’s helping people to realize the severity of it. They may think you're over exaggerating or it's not a big deal.
Another thing that helpful are kids. I think kids are understanding and are telling their parent and I've even had parents tell me that. When a kid comes home and says, “Oh, no, we can't bring that treat because Carter has an allergy, so these are the only foods that we can bring because then it’s safe for him.” So kids are the ones making sure that the parents are understanding and complying.
You have to be vigilant until there is more of advancement in technology around a cure for peanut allergies. Or even if there's not a cure, something that makes it less fatal, in all honesty.
Carter, I'm proud of you as I sit here listening to you because you are kind of like, “yeah, that's just the way it is.” But I think I think sometimes you forget about some other struggles or maybe some of the times you felt left out or felt like, “Why are you guys eating that in front of me? You know, I can't have that kind of thing.” Or that sometimes maybe that felt a little icky to you. But now you're kind of rolling with it and have risen above some of those hard things and feelings. I’m proud of you.
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