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Why My Son With Sensory Processing Disorder Is the Superhero I Never Knew I Needed

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“Mom? Is The Hulk a bad guy?” my 4-year-old asked with sad, thoughtful eyes.

“No, honey. He’s a good guy who saves people and has lots of friends. He just doesn’t know how to control his anger,” I said. I wasn’t too familiar with the Marvel character, but I believed my answer to be palatable enough for my melancholy little guy. I knew what fueled his question, though.

I thought back to my son’s history of inconsolable sobbing and screaming. As a baby, and even still a young toddler, he would have severe, self-injurious meltdowns, for reasons unknown to me. At times, he was rage personified. It got better as he learned to talk and verbally express himself.

Triggers were hard to determine. The objective was for me to make him calm.

As a baby, he was uncomfortable in his own skin and needed to be constantly held. I went against everything doctors told me and co-slept with him for the first four months, because he was insecure and irritable the moment he left my arms. I learned to eat, feed his toddler sister, go to the bathroom and make grocery store purchases with one hand. At 8 months old, he was finally able to take morning and afternoon naps by himself.

Aside from being held, he constantly nursed. His body tightened up, and his latch was incredibly intense as he breastfed. He was at his most comfortable when he felt the compression from my arms and could suckle freely. Everywhere we went, people would recognize him by the back of his head. It was a rare treat to see him interact with the world around him.

When it came to feeding him solid food, he had little to no interest. Even after his first birthday, there were some days when he insisted only breastmilk would suffice. After successfully introducing all of the food groups to my older daughter, I felt directionless in feeding my middle child. Over time, he showed a strong preference for crunchy, salty foods like chips, crackers and nothing else. When I’d write to my mom groups online, I’d ask them what I should do when my son would only eat crackers and chips.

“Stop feeding him crackers and chips,” they’d retort.

No.

My child would surely starve to death. His will is as strong as his distaste for different textures. It wasn’t a good idea, nor was it effective to forcibly make him eat different foods. The comments were ignorant.

Meals out were difficult, not only because his palate was so limited, but because a peaceful meal wasn’t an option. Rather than sitting squarely in his seat, he would whimper and writhe inconsolably as I’d walk him around the restaurant grounds at a gait that was acceptable to him. My husband and I would take turns eating our meals and pacing with him.

During his 2-year-old well check at his pediatrician’s office, I relayed my dilemma to the pediatric nurse. She looked at me with an expression of clarity and excused herself to retrieve some pamphlets. She set them in my hands when she returned, and I leafed through them. Photos of snack-sized portions of food were presented, with captions like “one handful of grapes.”

After a few decades of successfully feeding myself, I knew how to serve food — I just didn’t know how to get my son to eat a balanced meal.

Because he had developmental delays, due to his lack of interacting with the world, he was eligible for early intervention services. Aside from physical therapy, he started therapies in feeding. I didn’t know such a thing existed. We made some progress in food-chaining, but he eventually reverted to his old ways.

He also has sensitivities toward rain, snow, mud, sand and wind. His baths are quite the exhausting ordeal for both of us. As I cup handfuls of water into his hair — and away from his face — he copes by screaming and blowing raspberries. He’s completely ridiculous, and he’s mine.

After taking him to a series of specialists, including a developmental psychologist, we learned he shows signs of autism. We were told we would best serve his needs, specifically, by taking him to an occupational therapist. After a lot of back and forth with our insurance company, we landed him in OT, where he was evaluated yet again. He scored high in sensory processing sensitivities, in areas related to feeding and managing emotions. He also displayed sensitivities in the tactile category. We’ve been pleased with his placement.

I gave his school his medical history and an explanation of his behavior, and they performed thorough evaluations once he started 4-year-old kindergarten. After his first week of meltdowns and being restrained on his bus rides, something clicked with him. His meltdowns dissipated and he developed an enthusiasm for school. His teacher no longer played with the idea of giving him his own private tent. When I told his occupational therapist this, she smiled and said, “our sensory kids tend to thrive in school. They love the structure.” He wasn’t in need of a behavior plan or any interventions because he adapted so well. He even scored a high IQ.

I have always tried to keep a sense of structure in our household, but having three small kids with strong temperaments would sometimes be the motivator in my having to remain flexible. A single public meltdown could rearrange an entire morning. Bedroom routines were kept pretty strong. We would go over the family calendar every night and draw an X through the day. My middle child would eagerly ask what events were going to take place in our upcoming schedule, and would memorize their order.

My son’s meltdowns would still occur at unpredictable times outside of the classroom. I worked hard at distracting him from his rage so that other calmer, problem-solving areas of his brain would activate and take over. And afterwards, he would often forget why he was so angry in the first place. All that he knew was that his anger was hard to let go of, and he would be so apologetic.

“I’m sorry,” he would say as he snuggled into me. He could be as loving as he was angry, and no one else has ever loved me as hard as this little guy does. This loving behavior emerges frequently. It is unblemished and so complete. Frequently, he tells me that Mother’s Day is his favorite holiday because he loves me so much. He tells me that he loves me several times a day, and I hope that never ends.

As part of our routine, I treat him to McDonald’s once a month. He has made such great strides in trying new foods in OT, even adding chicken nuggets to his palette. After an OT appointment, I took my kids for their monthly fast food meal. The Avengers action figures graced the Happy Meals that week. He asked his brother and sister who their favorite superheroes were. Then he announced with a proud smile that his was The Hulk.

Getty image by dragana991.

Originally published: November 11, 2019
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