• Casey

Eating: Who knew there were 32 steps?

Updated: Mar 6, 2020

The day T's new occupational therapist handed me a laminated copy of the 32 steps to eating, I started crying. We were just getting to know each other and it was a few weeks into our relationship, but I couldn't help but let the tears flow. T had basically stopped eating. He wasn't getting enough daily calories. When I had filled out the intake form listing what T was willing to consume, there were zero foods in the "protein", "vegetable", and "fruit" categories, including the foods he was willing to lick. At the time, he was only eating honey nut cheerios, but even those were not a safe bet because they had to be in a particular bowl, and unless he had the Ipad to distract him from the bodily sensations that sent him into a panic, he would shut down and refuse to eat. Or run from the table. Or fight. Or scream.

Unsurprisingly, the occupational therapist and the pediatrician determined that it was medically necessary to do intensive feeding therapy. We would follow the SOS approach to feeding because T's resistance to eating was primarily sensory-based, rather than behavioral. The very first step on this 32-rung ladder was simply: To tolerate being in the same room with a food. This made sense to me because T couldn't be near foods that were wet or mushy to any degree without running from the table or turning away his head and dry heaving. He had to be in a different room when our one-year old was eating. He would gag and almost vomit if his hand simply brushed a mushy banana or oatmeal.

As a side note, I don't know if there is anything more devastating as a mother than the inability to nourish your child. It gives your heart a dull ache during the day and the pain throbs deeper when you witness your child not eating. Although different, I know friends who had difficulty - or could not - breastfeed for whatever reason and experienced a similar pain. It is the feeling of intense failure surrounding not being meeting the basic needs of your child, anxiety about his or her well-being, that no amount of just give him formula's or kids are picky, he'll grow out of it's can alleviate. As a mother, eons of evolutionary history are embodied in your molecules and they are shouting: You must feed your child! Keep him alive! Although I didn't have trouble breastfeeding, I deeply understand this biological scream and how your amygdala feels about it.

And as another side note, I can't tell you how frustrating it is to hear a pediatrician or other parents tell you that "if your child gets hungry enough, he/she will eat". This is simply not true. I have met more than a few parents of an autistic child or a child who has sensory-based feeding difficulties who have ended up needing to use a feeding tube for months or more to sustain their child and keep him or her alive. Luckily, our family never got to that point, but the self-flagellation around this parental failure had mounted to a point of desperation.

The good news is, once we tuned out other people's and non-specialists' opinions (and there were many), we figured out a path forward for our son and family. We decided to ignore the pediatrician in D.C. who had told me that I "needed to make home-cooked, family meals every night" because that would resolve his eating issues. I was already trying my best to do that. And when I told her my husband and I both worked full time and I had nearly an hour commute from downtown D.C. she told me that "she had done it with three kids, so I could too." Thanks, Doc. Another pediatrician told us to just wait it out and to give him gummy vitamins. Well, after a year, T still ate those gummy vitamins, but not much else. Other people suggested that we make him sit at the table and force him to eat what we put in front of him. We did that, for many excruciating months, and he would end up gagging, then screaming in the aftermath of a showdown over sliced apples or chicken nuggets. My heart would break, he would be in agony, and he still wouldn't eat the apples or chicken nuggets. Something was clearly wrong here.

Anyways, back to the good news. Once I got over the initial shock of the 32 steps, I got on board with the premise of therapy: gradually, and with positive food connotations, we could move T out of the knee-jerk reaction where he panicked any time he encountered new foods. We would first - and in a separate room of the clinic - get him the sensory input he needed before even attempting to interact with food (he is a sensory seeker). He would swing, jump, crash, and do heavy work before even entering into the "food school" room.

Once in food school, we would move slowly (read: over the course of months and months) up the 32 steps of eating to consuming new foods. We would build his confidence and de-sensitize him to different kinds of foods through non-threatening exposure and sensory integration, moving through steps like looking at the inside of an orange, touching apple sauce with a paper towel between him and the offending wetness, listening to how a new type of chip crunched when the therapist took a bite.

The feeding therapy was premised on play and fun, and friends, as you may know, I am now a total convert to play-based anything.The first day of "food school", he got to pound beet puffs and pirate's booty with a plastic hammer and then use glue to make food art. And then he got a spoonful of chocolate ice cream.

The next session, he and the therapist pretended to be squirrels "bumping" food veggie sticks off their heads into a blue bowl. Then cookie butter that was smeared across the table, turned into "mud" and her and her fingers were the piglets slipping through it.

Continually, and any time T turned his body away from what was on the small table in front of him, the therapist would say, "I will never make you eat food, we are just learning about it". She made him laugh. She gave him treats as a reward. He was "working for" chocolate ice cream, or gummy worms, or cheez-its. No new or healthy foods came closer to his mouth than the top of his head for a few weeks. But I decided to trust her and to trust the process.

After three months of intensive therapy, a home-based protocol to accompany the occupational therapy (which I will write about another day), and lots and lots of patience and positive encouragement and wasted food later, I am happy to report the following. T can sit at the table without an Ipad for a full five minutes and "learn" about new foods like pineapple and sugar snap peas and cooked rice, without gagging. Sometimes he even puts new foods in his mouth and takes minuscule bites of things like red pepper and strawberries. For a week he even tried beef jerky after not eating meat for over a year (This was over the winter holiday break when both parents were home and present, so I think he had maximum level of regulation to branch out). This morning he tried a smoothie that had Greek yogurt, bananas, strawberries, orange juice and crushed ice. He only sipped a few ounces, while distracting himself on the Ipad, but that is step number 32, friends. All the way up that ladder! (Here is a more friendly image of that ladder, by the way).

So here are some initial things I have learned about sensory-based eating issues and that I will share and write about in the months to come because of how fundamental eating is for a healthy kid and functional family life. Family meals had been a terrible battleground for us, and for the first time, although not perfect, we usually get about five good minutes with the whole family seated in the mornings for breakfast.

Hopefully the insights below are helpful to parents who are as desperate as I was. I know that you have a pain in the pit of your stomach and a tightness in your chest, but I am telling you: therapy works and it will. get. better. I FEEL YOU. YOU CAN DO THIS.

  • Sensory-based eating problems don't resolve on their own and kids don't grow out of them, they grow into them, so they need to be addressed by therapists and specialists.

  • Sometimes kids can't feel where food is in their mouths due to tactile or proprioceptive under-sensitivities, which can send them into a panic, especially if they have a history of gagging or choking. My son, for example, loses food in his mouth and gags, which is why he only likes crunchy and dry foods or liquids.

  • Sometimes kids have over-sensitive smell and/or taste and/or tactile sensory input, which also makes eating hard, if not impossible.

  • Or, it can be a paradoxical combination of over and under-sensitivities that are confusing to everyone, but this is just how Sensory Processing Disorders are.

  • When you start therapy, sensory-based issues may appear to be getting worse. This is because the first step to sensory-integration therapy is helping your child identify the sensory input he or she is getting and understanding what it is. For example, as T learned about foods' smells, feels, and sounds, he actually got more averse to some foods, before he started to be more open to trying new things.

  • Slow and steady wins the race. The OT said that this approach - to fully work - may take one-to-two years, depending on how much you work on the exposure and "food school" at home.

  • Even if a kid eats something one day, he or she might not eat it the next. This - like many skills that are sensory based - will depend on how much anxiety or stress the kid has that day, the context, and the presentation of food, or even the way something is sliced or packaged. These are things that can be imperceptible to a parent, or seem like no big deal, especially if a kid is not communicating with words or unable to identify what is wrong. But eating sliced apples today, at home, when a child is calm, is not the same as asking this same child to eat those sliced apples at a restaurant or at school.

  • It can take 20 times licking/smelling a food until a body determines it is safe to eat. My OT says to T, "Remember, it takes 20 times until our body knows it is safe to eat."

  • Whenever T goes into fight or flight around new foods, I remind him, "We are just learning about the food," "I will never make you eat something you don't want to eat," and ask him to engage on some other level on the ladder, besides eating - like visual input or smell: "Can you tell me what is on your plate? What color is it? Is it wet or dry? Is it smooth or bumpy? How does it smell? Fruity or plant-y?"

Until next time, friends. Happy eating (or tolerating, or smelling, or whatever. It's all good).

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