I wrote this post several months ago, but for some reason or another, I never published it. October is Sensory Processing Disorder Awareness Month, so I thought this was a good time to finally put it up on the blog. Even though this “Invasion” happened a while ago, it easily could’ve happened yesterday, and it most definitely could happen today or tomorrow.
To learn more about sensory processing disorder, visit www.spdfoundation.net. A great book to read on the topic is “Raising A Sensory Smart Child,” and for personal insights from a Sensory Mama (i.e. me), check out my posts tagged with “sensory processing disorder” and “food issues,” including this one. As always, feel free to ask me any questions.
I’m not an expert, but I am a Mama.
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“Yesterday was the worst day ever,” said my son when he woke up. (For the record, he says that a lot. When you’re six years old, the world is concrete. Up or down. Black or white. Good or bad. Thankfully, he also often says, “This is the best day ever!”)
“Why was yesterday the worst day ever?” I asked.
“Because I cried a lot.”
He sure did. The evening before, we went to the Food Truck Invasion that visits our neighborhood park every Tuesday. I was really excited to take him because I looked online and saw that there would be a pasta truck there. He recently faced his fear of spaghetti and decided he loved it (as he does ziti and elbows…but not penne because penne has ridges and ridges are scary…except for ridges on potato chips, which aren’t scary at all).
Adding spaghetti to his short list of acceptable foods was a mixed bag. It was another carbohydrate when what he really needed in his diet was protein (and God forbid something green!), but it was new, and every new food he tasted chipped away at the brick wall he’d built up around himself.
My son was diagnosed with sensory processing disorder a few months before his fifth birthday. He spent the next year in intense occupational therapy – swinging, jumping, leaping, stretching, and strengthening – to find comfort in his own skin, overcome his fears and anxieties, lessen his sensitivity to sound and touch, and build confidence. After treatment, he was, quite simply, a different kid. My scared, listless, there-but-not-there child shed the skin under which he was trapped to illuminate his true self – a bright, funny, and outgoing boy.
Transformation aside, to say he’s cured would be false. His progress has been nothing short of amazing, but he’ll always be sensory sensitive, and we work daily to help him overcome the fears and negative behaviors to which he still clings. The biggest obstacle that remains is food, for which we have three goals: (1) introduce new food, (2) teach coping skills for when faced with unacceptable (to him) food, and (3) generalize (for instance, spaghetti home tastes just like spaghetti at a restaurant). What we want more than anything is to help him succeed (i.e. eat) in as many environments as possible, including school, camp, birthday parties, friends’ homes, restaurants, and now the food trucks.
In the center of the Food Truck Invasion at the park was a bounce house. Not surprisingly, we started our culinary adventure there. After about an hour of bouncing, I said, “Okay, let’s eat.”
“Spaghetti?” he asked.
“Spaghetti,” I confirmed.
There was no prouder Mama at the park than me to be able to finally purchase food – plain spaghetti with Parmesan cheese – for my child, but when we finally sat down at a picnic table and I opened the plastic container that held his dinner, something had happened. The plain spaghetti with Parmesan cheese morphed into plain spaghetti with melted Parmesan cheese.
He shut down. He refused to eat a single bite. Not even one cheese-free strand. He threw his fork on the ground. He threatened to run back to the bounce house. He cried. He screamed. He cry-screamed. He melted like the cheese on his spaghetti.
Except it wasn’t the end at all.
There was more crying, more screaming, more cry-screaming, a dramatic scene where we abruptly left the park, a long time-out at home, more crying, a silent bath, and a hasty bedtime, but the thing about food and fear and sensory processing disorder and my son is that the moment he lost it at the Food Truck Invasion at the park was as much about me as it was about him.
I was naïve. I wrongfully built up the night before it even happened. I researched menus, mapped out the night (bounce house then plain spaghetti with Parmesan cheese then ice cream!), and, as a result, forgot how unpredictable six-year-olds – with or without sensory processing disorder – could be. I also didn’t account for the fact that Parmesan cheese melted when inside a hot, closed container.
I was angry. Because I paid $8 for plain spaghetti and Parmesan cheese and he didn’t say thank you. Because I couldn’t think of anything more delicious than melted Parmesan cheese. Because he didn’t trust me that it would taste good. Because he behaved so poorly.
I was confused. Sensory processing disorder is a tangled web of physical and behavioral problems. Where did one end and the other begin? I didn’t want to punish him if his neurological system was out of whack, but I couldn’t tolerate cry-screaming over melted cheese either.
I was exhausted. I couldn’t prepare his food perfectly for the rest of his life. I couldn’t cut the white rind off of every single wedge of orange, toast a waffle just so, and make sure bread was free of crumbs forever. I couldn’t promise that he’d never be faced with melted Parmesan cheese again.
I was scared. I love food. I live for food. Many of my most cherished memories are connected to food. If I close my eyes, I can taste the peanut butter and marshmallow fluff sandwiches I ate on the beach as a child and the sand that ground between my teeth with each sweet and salty bite. I can feel the steam rising from my mom’s matzo ball soup. I can hear the sizzle of my dad’s Sunday morning chocolate chip pancakes on the griddle. How was he going navigate life without food?
I was guilty. (Oh so guilty!) I’m the one person in this world who is supposed to love and accept him unconditionally, but in that moment at the Food Truck Invasion at the park, I wished he were different.
I was negligent. I convinced myself that his food issues had improved when the dysfunction was simply hiding behind procrastination and avoidance. The spaghetti breakthrough was a success, but it wasn’t enough. I stopped pushing him because doing so almost always made me feel naïve, angry, confused, exhausted, scared, guilty, negligent…and sad. Sad for the unwelcomed, unwanted, and uninvited Invasion in our lives.
I went to sleep sad that night and woke up sad the next morning. To my son who told me yesterday was the worst day ever because he cried a lot, I replied, “Yesterday was a pretty bad day for me, too.” Then we got dressed for the day.
Except it isn’t the end at all.
8 responses to “Invasion”
I had no idea. Thank you for putting my “picky eater” in perspective and for being so honest about your feelings. You’re totally entitled to them.
Well written, interesting, and loving. I recently wrote a fiction short story for a contest about a woman who had lost her sense of smell, and thus taste, and as I read your true story I could really understand both you and your son…I wish you all the best, and just remember, you are both human..
I love your honest telling of the situation and feeling you are goong. I am overwhelmed by the emotion of both of you gone through and start a new day as indeed not the end at all!
THank you!! What a great post! I have a 3 year old with SPD, and it would seem food is one of the last real hurdles we are working on (through?). It’s a difficult challenge to say the least, and because she has conquered many other issues so well (hypotonia and apraxia are not the least of these), I tend to need a reminder that her ultimate resistance to food is not just her being picky. She’s better than she was even just a few months ago, most foods need to be either pureed or hard and crunchy, anything in between is on the NO list, and absolutely nothing with multiple textures in the same spoon!
We’ve been working again with her OT on getting through some of the food issues, Friday she at Mac/Cheese…(granted we had to mash it up pretty well), but yesterday, only two days later, she’d have nothing to do with it, to the point of another meltdown. Ugh.
Thank you though, for reminding me that it’s not just her/me/we.
I appreciate your post, and the timing.
Thank you for your kind words and for sharing a bit of your story. I write about my experience with SPD for myself, but also because it’s important to know that I/you/we are not alone in this journey! Good luck with your daughter. My son has overcome SO many hurdles, and I’m sure your daughter will do the same. With OT, the transformation is amazing.
I often remind myself that there was a day not that long ago, that Chloe would literally shudder with discomfort at the SIGHT of velcro. Now she has fun with all the hooks/loops that she can find…:-D
Thanks for sharing! Anyone who has a sensory sensitive kid has certainly experienced “the worst day ever” and has felt equally naive, guilty, confused and scared! We have all experienced the “why can’t he be normal” moments then drown our guilt later with a big glass of wine.
My son still only gets protein in the form of Velveeta Shells and Cheese (God help me if they ever stop making it) and meatless cheeseburgers melted for 17 seconds (not a second more, not a second less) with just the right amount of ketchup (I have a stockpile of ketchup in case you are ever in need). I keep hoping one day my son will actually let me toss an actual burger on that meatless bun, but until then, I will keep trying, keep crying and keep a bottle of wine handy for the moments I have an epic failure!
Hang in there! Hoping you celebrate Sensory Processing Disorder Month with lots of bouncing, unmelted Parmesan cheese spaghetti and ridged potato chips!!
Gotta love a meatless cheeseburger! Taco night in our house involves nothing but taco shells. 🙂 Thanks for reading and for your kind words. I write these stories for so many reasons, including that it’s crucial that we know we’re not alone on this wild ride.