DF, GF, CF, WTF?
When I started writing my blog – just about a year and a half ago, give or take – I was the mother of two typically developing boys in a family with no dietary restrictions whatsoever. Or so I thought.
A few months after beginning Red, Round, or Green, I found out that my older child, L., was not typically developing. He has Sensory Processing Disorder and a motor planning disability. His lifelong aversion to fruits and “wet” textures suddenly made sense, along with a host of other things. I was…I don’t want to say devastated, because truthfully, I wasn’t. I was relieved to know that there was a name for what was going on, and that there were things to be done about it, and although it’s not all rainbows and sunshine to find out that your kid has a hidden disability, I knew that L. was the same old loveable, wonderful L. he’d always been – problems or no problems. J. and I digested the news and did what we were told we should do for him, and we moved on. Life continued. The sky never did totally fall, even if it felt like it might sometimes, and L. has sailed along developing just about as well as I guess we can expect that he will. He flourishes in some areas and flounders in others. He’s great.
So after that, we became the parents of one typically developing child, and one atypical child, and we still had no dietary restrictions of any kind. I would think about it from time to time – the “what if?” – because after being thrust very actively into the world of parenting a child with special needs, your bubble feels as though it has both narrowed and expanded. In some ways, it’s smaller than before, because in those early days it can feel just as if you’re tunneling underground – digging a burrow in which you, your child, and all the doctors and experts and therapists will hide out together, and where the parents and children who are free of such concerns can’t survive. Your vision becomes totally focused on the goal, and the goal is helping your kid, even if it’s to the exclusion and detriment of things like laundry. Or showering. But in other ways, there’s an expansion taking place. You get to see deeply and intimately how much little things matter, and how much better off you’ve got it than the other families you notice (or even sort of befriend) in the waiting room at therapy. So many of the families I’d see when I hung out with L. at OT/PT were caught up in dietary needs – feeding tubes, liquid diets, teaching to self-feed, managing multiple severe allergies, you name it. And it made me think.
I remained thankful that we didn’t have to deal with any of that, right up until a few months ago, when J. and I realized once and for all that we could no longer ignore P.’s intolerance to food dyes. If you’re keeping track, that means that in the space of less than a year and a half, I went from parenting two typical children with no dietary needs, to parenting one atypical child with no dietary needs and one typical child with a noticeable food intolerance. Sigh. I didn’t mind cutting out dyes from P.’s diet – especially since we don’t approve of them and don’t serve foods in our home that contain dyes anyway – but managing the issue outside of our home environment has been a learning curve that gave me fresh insight into the special hell that is the world of a food allergy parent.
But then we got on top of the dye thing, and it started to feel pretty easy. I was just thankful that food dyes were my only foray into restricted diets and that I didn’t have to worry about any of the HARD stuff. Like peanuts. Or dairy. Or gluten.
Dear Universe: WTF already?
A few weeks ago, we took L. to a specialist because I wanted to follow up on some advice I’d gotten about maybe supplementing his diet with some fatty acids, among other things. He’s still doing great, but with Kindergarten coming up in the fall and some problems persisting even though J. and I both felt he’d conquered those phases, it seemed like a good idea to take another step towards making sure we looked into every possible avenue to keep him functioning at his best level. In other words, I had that sort of weird gnawing Mommy sense that there was something else that needed to be done for my kid, and I went skipping off to go find it. Unfortunately, while I found the specialist who would help us with the fatty acids and the probiotics and so forth, I also found that she wanted us to eliminate all gluten and casein from L.’s diet.
It’s only for a trial period (at least right now; who knows, long-term?). Six weeks. Forty-two days. Not that I’m counting.
But let’s recap, shall we? In just over a year and a half, I’ve suddenly taken a sharp left turn and become the parent of a typically developing child with a food intolerance (which, given that he’s also allergic to sunscreen and has been since infancy, probably means he’s got an overall chemical sensitivity), AND a child with asynchronous development who now, at least for the time being, has to be on a GF/CF diet.
It’s sort of a lot to take in.
I started with panic. Lots and lots of panic. I wasn’t equipped for this. I, frankly and selfishly, did not WANT to go GF/CF with L.’s diet. Not even for “just” six weeks. Not for a WEEK, for Pete’s sake.
It’s not the diet. I’ll be honest. If I really examine how I was feeling a few days ago, as this information began to sink in and J. looked me in the eyes and said “You know we’re doing this, right?” What I was feeling was more a sense of rueful cosmic mockery. I wanted to shake my fist at somebody and go, “Oh, come on. REALLY?” Really? After all the time I’ve spent trying to learn about food and investing in feeding my family as well as I can, after all the effort, after everything that’s gone into crafting our food routines in this household, now you want to throw me one of the most cursed curveballs in the food intolerance world? HAVEN’T I DONE ENOUGH ALREADY?
I’m over it now, I think. After four days of this newness, I was feeling calmer. Of course the first thing I did, after shakily receiving J.’s reassurances that “If anyone can do this, you can,” was hit the grocery store near my office on lunch break so I could stock up on a handful of items to make the first week easier. Almond milk – check. Gluten-free pancake mix, for emergencies – check. Organic popcorn crisps for a school snack – check. And, to be completely honest, a box of Rice Chex cereal. No, ordinarily, I don’t buy boxed cereals for the boys. And I’m not sure how proud I am of the purchase. But I knew L. was familiar with Chex from school and elsewhere, and it made me feel better to pick up something that would seem sort of normal to him while I was feeling food-haywire.
I started to realize in a tangible sense why some parents take the “easy” route to feeding.
I’m determined not to let this experience be defined by that box of Chex, though. I have no way of knowing, right now, whether he’ll have to swear off gluten and/or casein in the long term, or whether we’ll be lucky enough to discover six weeks from now that the elimination period was all he had to go through. On Day One, I was planning to approach this as a short-term thing, and vowed not to go crazy buying special products or trying to bake gluten-free bread; but then again, I’m not the kind of person who can go half-in for much of anything. If we’re going to be GF/CF for six weeks, six months, or six years, we’re going to do it the best we can. I’m not going to let Chex cereal and GF/CF convenience foods become my crutch.
So for the next 42 days (38 now!), I’ll be experimenting. By God, I WILL bake, and I WILL figure out some ways to make this whole GF/CF curveball into an experience that may almost approach something resembling fun. Already I’m encouraged by little things: L.’s discovery, for example, that he loves almond milk; the realization that coconut milk makes smoothies taste better than dairy milk; the fact that, rather than missing the snacks his school provides, L. has declared himself happy to finally have Mommy packing him special snacks that are “much better.” (Kicking myself, by the way. Had I known before that it would be this easy to get him off the crackers and stuff his friends eat at school, I would have started sending his snacks years ago.) It can only get better from here, I keep telling myself.
After all, I’m a pretty accomplished home cook and an awesomely formidable Momma Bear when I have to be. How hard can Dye-Free, Gluten-Free, and Casein-Free possibly be?
*Whimper.* Only time (38 days is NOTHING, right? Five and a half weeks? NOTHING!) will tell.
It can’t be any more transformative than the last year and a half.
This article originally appeared on RedRoundOrGreen.com. It is re-posted here with permission from the author.
THE WRITER: Bri DeRosa likes to think of herself as a young, cool, urban fringe locavore, but the reality is, she's just a working mom, neither quite as young nor as cool as she used to pretend to be, who’s trying to figure out how to get everybody fed. See how that's all working out for her and her family at RedRoundOrGreen.com.
Chris Regan and Ashley Mayne produce a wide array of delicious greens for the Hudson Valley.
With his new book, Forrest Pritchard tells the stories of 18 farms from all across America.
Forrest Pritchard and Smith Meadows are prime examples of sustainable family farming.
Jonathan Waxman shares his food philosophy with Slow Films.
A group of star chefs play with fire for a good cause.