"School Counselor, Licensed Therapist, And Mother To A Wonderful Son With Multiple Food Allergies"
- Gerardo Marcano
- Oct 15, 2021
- 8 min read
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 have been given the pleasure of hearing a great deal of important details about you and your family - but I would prefer you open up our interview by sharing a few details about who you are, what you do, and your beautiful family.
Whitney: Hi! Thank you so much for this beautiful opportunity. My name is Whitney Graves and I am a School Counselor, Licensed Therapist, and mother to a wonderful son with multiple food allergies. Weston is my only child and he will be 7 years old next week!
Tell us a little bit about Weston and some of the challenges that he has food allergies?
Whitney: Weston was diagnosed with food allergies at 7 month old. He’s my first and only child. I had work with children, my entire life and this was like nothing that I had seen before. From about 2 weeks old until his diagnosis every day was a struggle. He cried A LOT! Often times I was told, “Welcome to motherhood!”, “Oh you’re just a new mom or its Colic, or that’s what babies do” But deep down I was constantly worried because I knew this could NOT be “normal”. He vomited all the time all day, he lost weight, he was covered in a rash head to toe, and what was sleep?! He also began to not hit milestones so it was recommended for him to see a neurologist, a gastroenterologist, he had bone scans, they drew blood for autoimmune diseases etc.
That has to be intimidating!
Whitney: It was ! It was extensive and expensive! I also had a family friend of my mother that cared for him while I worked, that always expressed her concerns for him as well. After multiple doctor visits and being on medication for GERD, I was finally told to do an elimination diet and begin to track what I was eating because I was breastfeeding at that time. So my doctor had me cut cow’s milk and nuts first. Symptoms improved, but my son was still very sick. As time went, they finally recommended he be checked for food allergies after he began having anaphylactic symptoms at a restaurant after I gave him a taste of mashed potatoes at 6 month old.
What type of reaction did he have?
Whitney: His lip started to swell; his rash started to become amplified. He started to squirm as I held him in an attempt to scratch the rash that was spreading on his back. By the time 911 arrived, he was struggling to breathe.
Whitney: After the hospital visit, I received a call from a nurse in what sounded like a panic to tell me that my son was allergic to 11 different things. His food allergies at that time were: Peanuts, Tree Nuts, Wheat, Corn, Whey, Cow’s Milk, Egg, Chickpea, Shellfish, Soy, and the most unusual CHICKEN. We couldn’t believe it! No elimination diet in the world was going to fix this! So I immediately met with a nutritionist to come up with a plan on how to feed my son and what to do because I had only known of one kid at that time with food allergies, and it was only Peanuts.
Whitney: Mind you before this my doctor did recommend an elimination diet because I was breastfeeding at the time. I had curt out cow’s milk, but there were all these other things that he was allergic to that we didn’t know at the time. Culturally, breast feeding wasn’t praised as much. I had been doing some reading and decided that it would be best for my son. At the point, I started to take on that blame and say, oh it was me.
It makes sense that you would take that on since at that point you were mourning the diagnosis; even though you had no way of knowing that he would be allergic to these different allergens.
Whitney: I was immediately connected with several nutritionists. They were trying to create a supplement drink to make sure that he was getting his nutrients. We were eventually put on Nutramigen. This was the only “milk” that he seem to do well on. At that time it was like $45 per can. We did this until he was a toddler. His symptoms did improve but it’s quite an expenditure. He started hitting those milestones. He started talking more. He started to roll over.
Are there any other ailments that effect Weston?
Whitney: He also now has asthma, which is new in the last two years, his eczema has improved tremendously.
How has this effected your family?
Whitney: It effected everything! I am beyond blessed to have such an inclusive family that understands how serious his allergies are. My aunts call me in advance before large family gatherings to ask how to specifically prepare him a meal so that I don’t have to bring food for holidays. My cousins and friends constantly check on him and pay attention to things he can have. We have two main restaurants that we trust which are Mod Pizza and Lupe Tortilla where he has eaten safely the last 3-4 years. But it is extremely difficult to venture outside of those due to cross contamination or people not preparing food cautiously enough to avoid his other allergens.
Are there things you found along the way that surprised you, encouraged you, made you feel like you were on the right path, etc? Was it easy to gain support and momentum, or has it been an uneasy challenge?
Whitney: It has taken me a while to get to this space. As you can see, discussing my son’s food allergies still makes me emotional. It caused me to develop pretty severe anxiety and extended my postpartum depression which were things no one talked about or discussed in 2014 & 2015 like they do now. Overall, my mental health suffered the most, but it was my faith in God and the support of my family and friends that are now family that got me through.
Can you tell us a little bit about your family’s journey with food advocacy ?
Whitney: My advocacy for food allergies kind of happened on accident, honestly! As I
previously mentioned, I began to suffer from anxiety and depression during the time I was also understanding food allergies. I began to secretly see a therapist in 2016 and I learned that the greatest way to combat fear was with knowledge. I grew obsessed with educating myself on food allergies. I joined groups, I attended symposiums, I read books, I read articles. Whatever I could find. As my son got older I also realized the importance of educating him on his food allergies to help lessen accidents and trips to the emergency room when he would grab things or want things that he could not eat. As a former 3rd grade ELA teacher, I knew that one of the easiest ways to relay important topics to children is literacy. So I began to search for books I could read to him about food allergies. The search was minimal and a bit frustrating, but I went with it. One day during a therapy session I had therapy homework to journal my greatest fear or worry at that time and it was the thought of my son attending a “real daycare or school”. At that time my son was being kept at the home of a close family friend of my mother who we trusted and was so great with him. The thought of him leaving her care and being with other kids and allergens would literally give me a panic attack. So during the next session, I read her my journal writing of how I forethought things being when and if he attended daycare and school and she said, “Wow, you could put a cover on that!” And I smirked and said, “That would be cool!” Especially since I had yet to find a book for kids on Food Allergies with characters that looked like us. It was also common that hardly anyone looked like us at symposiums and in blogs/articles. So this was the birth of “Food Allergies Kinda Stink”. I took my nemesis and turned it into a book with characters that were African American just in case there was someone out there like us that could use it.
As a mental health professional, how do you incorporate self care for yourself ?
Whitney: Oh man, I am huge on self-care. I have become a lot better at taking breaks. I had gained a large amount of anxiety regarding people being around my son. Especially in the beginning. It was just too easy for something to happen. I really had to go in on setting time from myself where mommy gets to go and have time for herself. My self-care is church, therapy, pedicure, massages & traveling.
Can you tell us a little bit about your experiences with school, 504 plans and IEPs?
Whitney: The main thing is awareness and education. School staff needs to be just as educated and prepared as our family. It was a matter of meeting with school staff (aids, nurse, teachers), communicating the things that he was allergic to. It’s a matter of discussing how to do everything possible to keep him safe with a food allergy plan. The school district that my son is a part of is really great. They have a food nutrition packet that needs to be filled out. They had questions in asking for real examples of some ways that he might communicate how he’s feeling if he is sick. It was amazing. Something that some parents may not think about is setting plans in place with the after school programs which is a different staff, with different protocols. He self carries a kit from the Elijah Alavi foundation to these programs.
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 his allergens?
Whitney:I wouldn’t say that COVID has made it more difficult because I’m sure all food allergy families can relate to being overly cautious all the time when eating, sanitizing, wiping things down, etc. We were doing it anyways! Lol I will say that I buy his food items in bulk more often just in case there’s another lock down, and being in Houston, TX, hurricanes!
Are there other projects you’re working on, and/or goals you hope to achieve in the future?
Whitney: Right now I am getting back in the swing of things at work and focusing on growing as a therapist. Food Allergy advocacy is a part of who we are now and what we do. I hope to share my story similar to this more often to help other families out there know that they aren’t alone. I’d like to get better at sharing tips on traveling as a food allergy family, preparing meals, and even connecting mental health and food allergies because our children have their own unique struggles as well! My ideas are scattered, but in time it will come!
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?
Whitney: One of my favorite quotes that I feel resonates with food allergy families is by Joan Rivers and it says “I wish I could tell you it gets better but it doesn’t, you get better”. Validating the thought that yes, food allergies do kinda stink, but we get stronger and better at navigating it’s challenges every day!
You can find Whitney Graves Book "Food Allergies Sucks" on Amazon
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