What We Need

     Everyone has things that bother them on a sensory level. Some people don’t eat cottage cheese because of the texture, don’t like walking barefoot, or don’t like loud, crowded concerts. This is all a piece of the sensory puzzle; kids can be hyper-sensitive or hypo-sensitive to any number of things. C is both hyper and hypo, which makes it challenging to know exactly what will be problematic or uncomfortable for him.

     The first time I ever tried to set him down in the grass, up came his feet. He was a baby then, and it was almost comical to watch, because he didn’t even see the grass, he sensed the grass. Bottom went toward ground, feet came flying up. Bottom went back up, feet went back down. He did just about anything to avoid grass or sand. It was years before he would play in the sandbox instead of next to it. We cheered the first time he flailed around in a pile of leaves. He was 6.

     C’s hugs have followed a similar progression. The first hugs he ever gave were shoulder hugs. He’d offer his shoulder to someone for a hug. He’d kind of lean in with his shoulder touching the person. There was no arm involvement in these hugs, and his hips and body were usually as far away as possible from the other person. Then he progressed into a head hug, in which he sort of buried his head in someone’s side with no other bodily contact. After that, he started giving real hugs, but mostly on his own terms, when he wanted to do so. But like his language, his hugs are often copies of the one who is hugging him; if I pat his back as I’m hugging him, he’ll pat mine.

     The end to the story is, of course, the bear hugs that C now gives some of the time. Both arms, full-on body contact, snuggling completely. He saves those for people he knows and loves. (Everyone else gets the “everyone else” hug, which is a combo head, shoulder, one side of the body hug.) I live for these bear hugs and wish I could bottle them up to give to those who need them. For the longest time, that was what I (selfishly) found so troubling about the way C related to us; I wanted hugs, real, meaningful HUGS. And now I’ve got them to share. ((((HUGS))))

     When we finally brought C home from the NICU, our doctor told us we had to keep him cold free for his first year, which translated to my quitting my job and staying home. For that year, my entire social life revolved around nurses and therapists coming to visit C at our home. Once we got the all-clear, however, we started to venture out in the world. At about 2 years old, we decided to try him in play school one day a week for some socialization. After a long visit, numerous conversations with the staff, the big day finally arrived. I brought him to the school, and he happily toddled into the room. He had no words yet, and had only started walking a few months before. I left, anxiety and eagerness fighting for control as I triple checked my cell phone to make sure it was on.

     I knew I had to come back and feed him lunch because of his feeding issues, so I went back early to observe. What I saw has remained one of my most painful memories. As I walked in the building, I heard the usual noise that one would expect coupled with something far more disturbing; the sounds of my own child’s cries, which any mother can pick out of thousands of such cries from a crowd of other children. As I approached, I saw him standing in the middle of the room, hands held up, fingers spread, tears streaming down his face. He was nearly hysterical in his sobs and as he stood there all by himself like he was all alone in the world. It was instantly obvious to me what was wrong - his hands were dirty. He hated having anything on his hands, and his frustration was obvious because he could neither communicate it verbally nor could he figure out how to fix the problem himself. “Boy, he sure is a screamer!” one teacher commented. I fought the urge to snap back at her that perhaps he wouldn’t be screaming if anyone had been engaged enough to figure out what he was screaming about.

     After getting him cleaned up, we proceeded to lunch, at which all the children happily ate their mini-tacos. I sat on a little chair at a little table, surrounded by little people eating big people food. I fed C his baby food and started crying. I couldn’t stop crying, and was soon fighting back heaving sobs as I tried to decide what to do. The young teachers tried not to stare at me in their complete and utter discomfort. There’s no manual for this; I felt completely lost and alone in the world - much like he had been when I saw him earlier. It was the first of many such choices I’ve had to make for him in is life; ultimately I took him out of a bad situation, one in which he probably could have learned something had I left him in the midst of it, but one where the lessons would’ve perhaps been at too great a cost.

     C’s feeding issues are especially difficult for people to grasp. The best way I’ve found to explain it is to say he is absolutely terrified of food. The thought of food can bring up a fear in him so primal it’s hard to imagine it wasn’t born in him. Yet I suspect the trauma of being re-intubated several times as a newborn (he would cough the intubation tube right out as a NICU baby, something the nurses found amazing), combined with a highly sensitive sensory system, a poorly developed tongue, and motor planning problems are the likely culprits.

     The issue first presented itself when he was nine months old. A well-intentioned occupational therapist gave him a cheerio, his first encounter with solid food, and he immediately gagged, choked, and vomited. It was downhill from there. Ultimately we found a feeding therapist (who would even know these people existed unless you needed to know?) and we started seeing her immediately.

     Apparently, feeding is one of the most all encompassing things our bodies actually do besides sex. All the senses are engaged, our hands must be able to find our mouths (no small feat for someone with trouble getting messages from the brain to the hands), our tongues must be developed enough to move the food around, and we must be able to swallow. When you think of how all these systems work together for us to actually eat, it’s amazing we can all do it.

     Many, many people have said to us that we should let C get hungry enough and then he would eat. AHA! If only that were true! There’s a small subset of children who will actually starve themselves to death rather than eat a food that scares them. It’s difficult for someone who has children who simply just EAT to grasp this. C is not a picky eater, but rather the texture, flavor, and newness of an untried food triggers an actual physical reaction that we all know as the “fight or flight” response.

     When we started feeding therapy, we were at war in Afghanistan, and I remember seeing pictures of children who needed help in so many ways. I asked our feeding therapist what would happen to a child like C in a country where he couldn’t get this kind of help. Her answer, both abrupt and painful, was, “He would die.”