In the years B.A. (“before autism”), I loved to cook. In fact, I loved it so much that I even tried out for the first season of Master Chef. My braised oxtail dish got me to the second round of auditions! I’ve catered two wedding receptions and even co-owned a gourmet jam business. The kitchen was my happy place. I could throw a bunch of ingredients – savory, buttery, sinful ingredients – together and have a predictable outcome. The process of creating dishes always made me feel like a success. Unfortunately, autism and gut disorders have made cooking a thankless chore. Instead of pride, I look upon my creations with doubt and pity.
My daughter has “leaky gut”, gastritis, enteritis, and a litany of food sensitivities that evoke some unpleasant reactions, ranging from diarrhea to intolerable behavior. All of my kids are prone to yeast overgrowth in their guts, and my toddler son has markers of intestinal inflammation and delayed gastric emptying. Because of these various issues, I’ve instituted a diet free of grains, refined sugars, soy, dairy, dyes, additives, and glutamate. We are also very restrictive with fruit, do our best to buy only non-GMO and organic,
and prefer grass-fed and pastured meats.
What do all of these rules mean, in practical terms? For one thing, our food budget is higher than most people’s mortgages and car payments combined. More importantly, with rare exceptions, I can’t just buy a bag of snacks or a box of pancake mix at the store. Convenience foods essentially do not exist. And dining out? Forget about it. Aside from the cost and the obvious frustration that comes from taking a toddler and preschooler to a restaurant, there’s the pesky issue of WHAT THE HELL WOULD ANYONE EAT? So, ninety percent of what we eat is scratch-made at home. Everything, from coconut milk yogurt to cereal to broth, is the result of my efforts. In short, I am now autism’s kitchen bitch.
Most days I wake up before dawn just to get breakfast started. And the cooking (not to mention subsequent cleaning) never seems to end: a batch of pancakes here, hummus there, scrambled eggs, bacon, muffins . . . And that’s just what happens before noon.
But the most stressful part of this “diet” is definitely the process of preparing for a road trip. The situation nearly renders me bald from ripping my hair out. Seriously: The. Worst.
Ever.
My family doesn’t vacation for fun, but occasionally we find ourselves taking a “medivacation” – a trip out of town or state to see some kind of specialist. Most recently, our destination was New Orleans. Though we were staying with another autism family, I knew not to expect that they would adhere to our diet. (By the way, the diets among autism households vary widely, from full GAPS, to FODMAPS, to SCD, to low oxalate, to Fiengold and more.) On top of that, it was only me and my son headed to New Orleans; my daughters were going to stay with my parents, and my husband would stay home to work. With plans to leave on a Thursday morning and return on Saturday, over 16 hours of driving roundtrip ahead of me, I knew I needed to be not just prepared, but over-prepared. My son is great in the car. That is, IF he stays continuously fed and is listening to Katy Perry non-stop. That means bringing a cooler and tote, both overflowing with safe snacks. In addition, snacks needed to be made for my other two children to take with them to their grandparents’ house.
I spent every spare second on Tuesday and Wednesday cooking and baking. My feet and back ached as I juiced fruits and vegetables for homemade gummy snacks. I grated carrots and diced pineapple for muffins. I processed cashews, dates, and almonds for homemade “Larabars.” My husband hand-rolled meatballs, while I cooked chicken breasts. I slow cooked then roasted chickpeas (flavored with coconut oil, stevia and vanilla extract). I pureed cooked apples, carrots, and butternut squash for fresh squeeze pouches. I boiled eggs. And then I passed out, cursing this new life of being tethered to the kitchen.
So why do I do it? It’s not as if my kids have any “real” allergies, right? No anaphylaxis, no celiac . . . YET. See, the thing is, once you know about toxins in foods and IgG allergies, you can’t unknow. Once you read about red dye and its link to ADHD, you can’t just brush it off. Once you see the red bumps and dark under-eye circles that come from gluten ingestion, you can’t unsee them. To live any differently than I do now would be willful ignorance. It would be intentionally feeding my children the equivalent of poison.
When my choices are gut and brain damage or hours in the kitchen, I choose the kitchen.
While I rarely find joy in there anymore, I do revel in the knowledge that I’m doing the absolute best I possibly can for my kids. Like every other parenting choice, one kind of has to take the good with the bad. For me, that means loathing what used to be my solace, sacrificing my former hobby. But that also means having healthier, more stable kids who appreciate and understand nutrition.
The Thinking Moms’ Revolution is very excited to be presenting a powerful line up of six internationally renowned speakers on the health effects of pesticides, food allergies, the gut/brain connection, and the nutritional pragmatics of cooking for special diets for the whole family. To read more about this eConference and to register please go HERE.
~ Lone Star
Stacey, my ASD daughter is extremely picky. But my job as a parent who is knowledgeable about the risks of GMOs and who recognizes the importance of food as it relates to behavior and health, is to rise above the temptation to totally indulge her desire for bread and juice. Instead, I find or make alternatives that are similar enough that she eventually will eat them.
It isn’t easy at all. There are fights and tantrums and screaming. But her survival is dependent upon mexpiration being strict.
Well done, your efforts are all worth it!!!
I hear you!!! The main inspiration for my nutrition blog is my kids and their dietary restrictions. I can understand Stacey’s response though because I remember a time when I had to beg my son with autism to eat anything at all. It took time (and zinc, and homeopathics and reward systems, and time, effort and then more time and effort). Well done, it’s a major sacrifice to put so much into your kids, but then unconditional love does that to a person!
Stacey, if you work with a kid long enough and hard enough, no matter where they are on the spectrum, no matter what their emotional struggles may be with the food, they will eat it. We only have one food rule in our house with two spectrum kids : you have to touch it. Not eat it. Just touch it. Once.
Survival happens, but if you don’t offer your kid the food that is hurting them, they won’t eat it. As the parent, you are in control of what’s offered. They are in control of whether or not they eat it, and how much of it they eat.
That being said, if your child won’t eat more than a couple of things, it will probably take awhile before they’re going to start eating more things.
But it starts with exploration!
If they don’t want to touch it with their hands, they can poke it with a spoon, a fork, a favorite toy, whatever they’re comfortable with. It’s all about the little steps that add up to success.
Oh God, I thought I was the only one. I have health issues myself which makes it all the more challenging. To make matters worse my extended family are very judgemental and rude so we have kept our sons ASD private. Such a struggle some days. You’re an inspiration.
Sounds like you’re doing an amazing job of maximizing flavor and variety through innovation. Sometimes people outside our realm don’t quite get the fact that we do what we do because we have to.
I get it. I do the same for my little guys. We are GFCF, Egg free, No artificial flavors colors or preservatives and low sugar. Hard but so worth it!
Thank you for summing up my every day existence. My boys all have extreme food allergies and the older ones were previously on the spectrum. As everyone gets older and bigger appetites, I find I spend more “quality time” in the kitchen than I ever knew was possible. TMR is such a great community and I always enjoy reading about others who share in my struggles. Keep up the great work !!
I recognize all of your pain and joy. The aching feet and the nonstop cycle of thinking about food/preparing food/cleaning up is grueling but worth it!
Thanks for sharing your experience as an autism mother. As a nutritionist, who often recommends many of these special diets, I understand the complexity, as well as power of these diets… But also understand the large amount of work that can be involved. Keep up the good work – and the hard work! As you know, it’s worth it. Know there are many of us here to support you and give you the kudos you deserve! Well done! All the best to you and your family!
You stated in your article that it is ignorance is you turn your back to knowing what you know and that comment is rather offensive. What do you do with the autistic child that is such a picky Eater the choice of them eating something vs the emotional depletion of having to try anything new? Autism does not choose which characteristics it takes on to form the rest of your child. Maybe eating differently or food in general rules the list of battles a parent needs to win. Making a blanket judgement that one chooses ignorance rather then calling it what it really could be which is survival, seems a bit unfair.