Synsthete and Writer Sofi Ghassaei is a minimally speaking Autistic teen with a very fierce voice.
In this podcast, Sofi shares her world view, her experience with food, reactions, sensitivities, friendship and joy.
She ends with “We are here to make you learn and find love, so pay attention.”
Please do pay attention to this SHORT but RICH podcast – heavy with experience, rich with meaning, and loaded with wisdom for you!
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Disclaimer: The information in this Podcast is for educational purposes only. Vaishnavi Sarathy, Ph.D. is an educator, not a doctor, specifically not your child’s doctor. Please consult your physician before implementing any supplement or diet recommendations.
Audio Transcription:
Vaish:
Hi and welcome to the 81st episode of functional nutrition and learning for kids. It is my honor to interview Sofi Ghassaei. Today, Sofi, as I mentioned soon is minimally speaking and use spelling to communicate. It’s been really interesting to talk with Sophie because Sophie has been on a restricted diet for a while, due to allergies and histamine sensitivity issues.
Now, in the functional medicine community this insight, that is water minimally speaking, and non-speaking, Autistics really think about dietary restriction. This insight is rare. What do they think about the different models described by society whether that be a medical model of autism, social model, and so on? This insight is really only obtained when you speak to people with disability.
Now, we live in a world where many kids and adults with a disability who were previously thought to be incapable of communication or thought to be cognitively delayed, have started expressing the beautifully complex intervals through spelling and other alternative means of communication. They really want to encourage more practitioners and parents to check out alternative communication methods and also to speak to autistic speak to people with Down syndrome speak to people with disability when you can onto surfing.
I’m really excited to be interviewing Sofi today Sofi CASA is a minimally speaking young woman in Washington state who loves crushing her goals. Her favorite cuisines are Persian and Thai. And her comfort foods or lamb still with rice and blueberries not mixed. Obviously. She says one food she would never try is meat from a bear. Today’s Sophie voice is going to be her sister Alia. Welcome Alia as well, can Sophie Can you start by telling us a little bit about yourself?
Sofi Ghassaei:
I’m Sofi really nice to be here today. I’m 18 and love reading music, writing poetry and writing my tandem bike like Ethan and said I use a letter board to communicate. My five-year speller bursary is coming up in November. My mom was my primary CRP, but my sister Leah is my voice today because she understands food issues.
Vaish:
Wonderful to talking about food what role does diet or food play in your life?
Sofi Ghassaei:
I have a love-hate relationship with food. I love to try new foods. Most of my friend’s mine textures, tastes, and smells which makes them picky guys regarding food. I like most textures. I have no problem trying new flavors or ethnic food.
I have had issues with allergies since I was very young. Mine are wheat milk and nuts. I’m sad about my new mango allergy. I really miss mango but it gives me a painful burn on my face and inside my mouth. Microsoft was toxic. My allergies keep me from enjoying food like I would wish meals made by mom and dad or home-cooked love meals outside are dicey chances and sometimes I lose. I haven’t eaten milk or wheat for 17 years. So gastric symptoms are long out of my notice. I don’t perceive major effects after having sugar. I know that it’s not all that healthy and I don’t eat that much junk or candy.
Some do well with meat. Others thrive on lots of fish. under ideal circumstances, all people learn which foods that suit them and have access to those healthy foods. Socially, I only have concerns with allergies, not if my diet is cool. I can’t imagine happiness with friends who would make a big deal about my food. Dating someone also on a special diet makes some things easier, but it’s not a good reason to fall in love. Having values in common seems more important than the kinds of snacks you like.
Vaish:
I love that. I love that. Thank you, Sophie. And since you’re talking about I liked what you said about mango I’m also sad because I love mangoes too. And I’m sorry that you have a mango allergy. So this might be a really good time to talk about histamine. I know you’ve spoken about pots before which is a new term for most of our listeners. So can you tell us about your experience with histamine and pots?
Sofi Ghassaei:
It took me years to get a diagnosis of pots, Postural Orthostatic Tachycardia Syndrome. I can’t quite explain pots. It really makes one dizzy when standing. It happens more to women. So doctors say it’s all on their heads. I can speak and spell. However, I couldn’t do either one very well back then. The doctors were dismissive because I didn’t have the ability to say my symptoms and feelings. We had so many doctors. I also have history and problems. It started when I was 13. I would fall asleep and feel faint after most meals.
Really I lost the ability to move but I could still hear everything around me. I happily make an effort spelling now, but it was tricky to learn when I always felt awful. Elizabeth understood that I couldn’t spell being passed out on the table. I’m glad that doesn’t happen now.
I craved high histamine foods like a drug. Even though I felt bad after tomatoes, strawberries, shrimp, fish, pickles, chocolate bacon, our chai, till CTU really helps mitigate most histamine. When enough low histamine stuff has lowered the bucket that month. Vice can tell about lowering the histamine bucket.
Vaish:
I will do that I will definitely mention more about the histamine packet later.
Sofi Ghassaei:
Besides making me pass out histamine gives me headaches and makes my heart race leading to anxiety. That makes me very dysregulated and also craving more vicious cycle. Anxiety affects me every day. I feel like my body doesn’t really settle.
Food always plays a part but it’s never the only factor. Realizing my future will not be easy also makes me anxious. Not sure if low histamine diet or salt helps my anxiety in pots most or both together. Pink Himalayan salt rocks. I even gave it to someone for his birthday. But I don’t know if you realize that looking at is like heaven.
Vaish:
Thank you for sharing about your health journey. I have a question for you. How has your health journey parallel your communication journey.
Sofi Ghassaei:
They’re both fraught with extreme problems and missteps. But we never lose hope and never give up.
Vaish:
I love that. And I really want to learn more about your journey. So my next question will be what is your biggest learning in your journey so far?
Sofi Ghassaei:
My motto is try till you die. It’s never too late to learn.
Vaish:
I love that also. Now, when we talk about autism or related motor, or other motor conditions, whether that be Down syndrome or society, we’re always trying to figure out especially for autism, whether to describe it with a medical model, or a social model. How would you like this to happen?
Sofi Ghassaei:
Some might not like this, but I think it’s mostly medical, at least for me. I remember my life before I got sick. I also acquired skills then as my body failed me. Last skill stayed in my mind only. I still deserve community respect, education and love.
Vaish:
You absolutely do. What is your message to functional medicine practitioners or other medical practitioners?
Sofi Ghassaei:
Please treat all of us respectfully. Listen to others if the patient is not speaking. They’re not giving up on their children.
Vaish:
Absolutely. And how about a message now I want to hear all your messages. What is your message to families of autistic kids?
Sofi Ghassaei:
Start spelling when they’re young, even if they have some spoken language. And remember to laugh every day.
Vaish:
Finally, Sophie, thank you for taking all of this time to share your medical journey in so much detail. Like a lot of it was very illuminating for me. What is your message to the world.
Sofi Ghassaei:
We are here to make you learn and find love. So pay attention.
Vaish:
I’m sure everybody’s paying keen attention to you. Thank you again, for everything you’ve said and chaired. By Sophie, I’m sure it’s as illuminating to you as it is to me to talk to an autistic person. I checked with Sophie and she identifies as a synesthete. And a writer. Sophie is asked if I could expand on the idea of a histamine packet. Now, unlike food allergies, where the intake of a certain food can cause immediate immune reactions
Sometimes severe reactions or even food sensitivities. Were a minor exposure, for example, to say gluten can cause delayed but severe reactions like headaches, dysregulation, neurological issues, and so on. So unlike these two cases, histamine builds up when your body’s unable to process it for any reason. So we’re not looking at an immediate allergic reaction or even a delayed sensitivity reaction. In that sense, we’re looking at something that we might call a bucket. Now, this buildup of histamine can come from the food that you eat.
If it’s high in histamine, it can come from a lack of histamine breakdown in your body due to various reasons, from immune response to food allergens, or environmental allergens that produce histamine, and even from microbial activity in your gut. Now, think of this histamine as filling a bucket and your many detoxification reactions break down reactions within your body as emptying that bucket.
Often managing histamine sensitivity for people is simply managing the bucket. In other words, making sure that it doesn’t fill faster than it empties. And the thought I have been thinking about this was that if you’ve done related rates and calculus, based if you’re doing a P fit kid is doing AP, this could be AP Calc A, B, or just call one, you’ve done problems like this rate of filling rate of emptying, what is the net rate? And so on, right?
Anyway, coming back, when the bucket overflows, when this bucket overflows is when symptoms like rashes behaviors headaches, flushing difficulty breathing anxiety, you know, really severe reactions in some people, these can show up.
In this podcast, Sophie is talking about managing this pocket. A lot of people know that gut health is really important to various things downstream. And this includes immune reactions and therefore, can manage symptoms of histamine sensitivities to mean overload. But most people aren’t very clear about what gut health means. For a lot of people.
This means taking a probiotic once in a while. And if that is confusing to you, as well, what is gut health? How do you deal with it? Check out my free ebook describing in detail what gut health is and how to treat it at functionalnutritionforkids.com/guthealth. Again, that’s www.functionalnutritionforkids.com/guthealth. Such a pleasure this podcast. Until next time, bye.
