Gerardo: Tiana On behalf of the Elijah-Alavi Foundation, thank you for extending your time, to talk with us. My name is Gerardo and I will be conducting your interview. I’ve had the opportunity to check out a little bit of your sons’ public speaking, which by the way, they are amazing ! I am taking some notes
Tiana: (laughs) , trained by me, of course ! I’m taking all the credit ( laughs) !
Gerardo: Yes! Great job, with that! You deserve that credit! So I wanted to start with asking a little bit about both of your sons’ journey with food allergies. First up, we have Jordan, and how old is Jordan?
Tiana: Jordan is thirteen.
Gerardo: I understand that Jordan was diagnosed with a dairy allergy at the age of one?
Tiana: Yes he had a dairy allergy and shortly after we found out he had a severe peanut and tree nut allergy. Luckily, he did outgrow his dairy allergy, but he still has the peanuts and tree nut allergy.
Gerardo: So I also understand that he is also allergic to some animals such as dogs, cats, horses and some other things ?
Tiana: Yes, dust mites, feathers, mold cats, dogs, horses, rabbits, pretty much most animals. For fifth grade, we went to the open house. The teacher let us know that they had a bunny in the classroom and the kids get to take it home for the weekend. I had to go to the main office and explain, that he cannot be in that classroom.
Gerardo: oh wow
Tiana: Yeah, This gentleman was like we will see what we can do and of course that wasn’t good enough, so I went to the principal, and she was understanding. She switched his class right away. Some people just don’t get the severity of it.
Gerardo: That has to be very challenging- having to manage all the way around and finding yourself in this position where your son really wants to be in this classroom with the rabbit, and experience everything that his peers are experiencing and he’s unable to because of his allergies. How did he manage with that situation?
Tiana: He was ok with it. He understood. I have always raised my sons, being brutally honest about the severity of food allergies. I have never sugarcoated anything. It has been a matter of (emphatically) saying, “You cannot eat peanuts”, “ You cannot eat tree-nuts”, “You could die”. I had to dp so because they needed to understand the severity of it. When you send them off to school, they are on their own. I am not there to watch them. I am not there to monitor if they are sharing their snacks with other kids- I’ve had to be brutally honest with them.
Tiana: They understand it. They get it. They have been diagnosed for basically their whole lives. This is something that they’re used to. This is all that they know. They have never had peanut butter. It’s not like they’re missing it. This is part of their daily lives.
Gerardo: Jordan’s younger brother is Joshua, and that would make him, eleven years old ?
Tiana: Yes
Gerardo: What are some of Joshua’s allergies?
Tiana: So, I had him help me with a list last night. His allergies include, milk, tree nuts, peanuts. soy beef, pork, wheat, peas, kidney beans, oats, sesame, fish, shellfish. eggs and maybe one or two other things.
Gerardo: That’s extensive, and across a span of different food groups.
Tiana: Yeah at one point he was allergic to corn. His allergies a are all over the place.
Gerardo: So how do they manage their diet? What does their usual daily food consumption look like with being allergic to so many different type of food?
Tiana: I’m used to it by now. People always ask me what do they eat?. Breakfast, lunch and dinner are manageable. It’s the snacks that give me a challenge. Right now, I have some barbecue chicken in the oven, that we will have rice for dinner. They will eat things such as broccoli, potatoes and gluten-free pasta (no cheese). We pretty much eat chicken and turkey every day in this house. Nothing fancy. It’s the snacks, the cakes and the fun stuff that are hard.
Tiana: We shop in the gluten-free section a lot, and in the the health food section in stores. They’ve learned how to make their own cupcakes and cookies that are allergen free using rice milk and gluten-free mixes. We make frosting from scratch we get very creative to make it work.
Gerardo: I wanted to check in and ask you because I know that my hay fever and allergies are pretty severe this season how are they doing this allergy season?
Tiana: They are allergic to different types of trees and grass pollen; all types of environmental allergies. They been relatively OK. We are homeschooling now, because of the pandemic. It makes it easier. Before we leave the house, they take one of their allergy meds. We’ve been lucky with that. Their dad has more severe environmental allergies I do not have any allergies.
Gerardo: Have you noticed any other allergy related ailments that affect the boys?
Tiana: More so, when we lived in New York. Now we live in Florida. Their allergies and asthma would be affected in the winter. They would need a nebulizer, every three hours, as well as their inhalers. Since we moved to this warm climate, they haven’t been affected by asthma Joshua also has eosinophilic esophagitis. He has an under control.
Gerardo: Can you explain a little bit about what Joshua goes through with eosinophilic esophagitis?
Tiana: The way that doctor’s explained it, his body thinks that the food is trying to attack it and that affects his esophagus and his white blood cells. With Jordan, there were certain foods that he became less sensitive to. With Joshua; that is not the case. Eosinophilic esophagitis affects his esophagus making it harder to introduce new foods. His allergy doctor wants to introduce new foods, but his gastroenterologist is against it. He gets a lot of stomach pain sometimes. Right now, he’s on two different medications daily for that.
Gerardo: How has this all effected your family?
Tiana: For our immediate family, we keep everything simple. For our extended family, there were some adjustments. For example, every Sunday we would go to my mother in law’s house for Sunday dinner. She would cook a huge Sunday dinner. She was so good with being mindful about the boys’ allergies. She would be careful with the ingredients, and show me what she was cooking with and adjust accordingly. She was probably the only person that I trusted outside of my own home, to keep the boys safe. I honestly don’t trust anyone else with it. I just feel that I cant. When I go out to places, I just bring food for Joshua. It is just easier that way. I don’t have to check in with anyone. I don’t have to be after anyone to make sure that they washed their hands in between things. Family has been very good to take care to wash their hands after touching foods. They have been very caring, and very compassionate. They have been very aware.
Gerardo: I am glad to hear that your extended family has been so supported and understanding. I know that culturally, food is equated with love and some family’s may not be so understanding of why we might not be eating their foods.
Tiana: Joshua made a new friend and he was over their house and his mom made sure to check with me by texting me, “ Can Joshua eat this ?” Just the fact that she thought about my son’s well being and made sure to have snacks that were safe for him, was very encouraging. It makes me emotional and means a lot to me.
Gerardo: As the world has been plagued with Covid-19, how have you managed with your family? How have you been able to keep your family safe, particularly from allergens? How has this affected doctor’s visits and such?
Tiana: I made the decision to homeschool them because their asthma makes them high risk. We have not been doing too much in the outside world. To an extent, it has been easier, because they are with me all day long. I have been cooking breakfast, lunch and dinner. We have not really been around others, including family. They are safer.
Gerardo: Can you tell us a little bit about your family’s journey with food advocacy? I have seen them on Allergy Stars, and their work with the Elijah Alavi Foundation. Can you tell me a little more about that ?
Tiana: I am very proud of them. As I had mentioned, I have always been very direct with them about the seriousness of food allergies. I have always taught them to advocate and stick up for themselves. I learned this from watching my mom and my brother who is autistic. She was a role model for me, in terms of the way that she navigated school systems, and other systems to make sure he had what he needed. I do the same for the boys. They have watched me deal with school systems, and teachers, and principals for them. They know how to vocalize their needs, and essentially say – This is what I need from you to make me safe.
It is such a big part of their lives. They are used to having separate pantries in the house and keep foods separate. Now that they have their own business, they have a platform as well to spread awareness, and a message of acceptance, awareness and inclusion. They want to use their platform to help other kids out there with food allergies. About one in four kids have some form of food allergies. This is 25% of the classroom. People need to be aware. It is not about making others feel uncomfortable. This is a life or death situation. All people with food allergies want, is for others to be aware, understand the severity, and respect them.
Gerardo: Tell us a little bit about JL Fun Colorz.
Tiana: The boy started their own custom crane business about two years ago they always want to have their own business so they came up with this idea of creating some thing a product that all kids could use and they make them in different fun shapes so the idea is instead of giving your kids chocolate or something that could contain allergens here is this phone thing that you can give them without allergens treats or party favors they have a little bit of a social media following two they are part of the Elijah‘s echo program and this is how they use their voice to be advocates for children like them Elijah‘s echo program gave them an outlet to feel empowered to be able to be the advocate that they want to be. We want to use our social media platform to where his awareness for different allergies they made a video for a food allergy awareness month which was this May any receipts it’s nice comments and support and others were able to relate to them people with allergies and people with food allergies and people whose kids have soup Allergy just help this is important this is something that affects people I’m doing the right day . They are really excited to take the song I’m so proud of them.
Gerardo: Before we go, are there any parting words of wisdom you would like to share with parents with children with severe food allergies and parents without children with food allergies and or asthma?
Tiana: The main thing that I would say is don’t be afraid to voice your opinion it’s to stick up for your child and demand what your child needs especially when it comes to school needs to be don. Having a support system is very important .
If you like to find our more about these young amazing Kidpreneurs, go to https://jlfuncolorz.com
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