Archive for February, 2008
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.”
A recent homework assignment asked C to draw a picture of someone important in our community and write about their job. “What’s a community?” he asked. I explained about our little town, and what keeps it running. Police officers, firefighters, doctors, the mayor, his principal at school.
He sat down to write, earnestly holding his pencil in hand. Brows furrowed, he bent over and wrote, “Mommy’s job is being a Mom. She takes care of me.” He then studied my face for a moment and drew his best picture of me, including his first attempt at eyebrows.
I know he doesn’t recognize my struggle with my sense of self these days. But at his deepest core, he recognizes the value of what I do for him. After all, he puts me up on that pedestal where police officers and firefighters live. What more thanks could I get?
I’ve seen autism do many things to many families, and more specifically, to many mothers. I’ve been struck by two types of mothers I’ve seen, and I can see how it can go either way.
First, the Mom who has such a grasp on her own kids and how they function. She recognizes the difference between autism behavior and kid behavior. She has the delightful ability to advocate for her children without being confrontational, and I envy her that skill. While killing the school staff with kindness, she manages to get what her kids need into their IEPs (Individual Education Plan) and probably makes the IEP team members think it was all their idea in the first place. She is calm, cool, collected, and I want to be around her in the hopes some of it will rub off.
The second Mom, (sadly, I’ve seen many more of these), breaks my heart. She is beaten down, either by difficulties with her child, frustrations with the school system or the inability to find any doctor who can help. Recently at a meeting for parents with special needs children, she spoke her piece, shaking with anger and rage, and stormed out of the room. I didn’t know whether to be relieved or to cry, and frankly, it made me feel horribly lucky and terribly sad for her at the same time.
I can see how it could go either way for many parents. We struggle so to help our children, to make sure they are getting what they need in life and school. Nothing is what we thought it would be, but we of course adore our children. We try to maintain a balance between the time we want to spend with them just playing with no agenda and the time we need to spend with them teaching them important life skills. We stay up late researching, sorting through medical bills, trying to read lab reports, and all the while trying to make sure we are taking care of everything else in our lives.
But I know which Mom I want to be.
C is the friendliest child in the world. He cares about everyone and everything. He talks to babies, kids, adults, elderly people, animals, planes, trains, cars, flowers, trees and bikes. Still, however, he is the friendliest kid without any friends you could ever meet. He is “friendly” with many children at school, but he doesn’t have any close friends. No one is running home from school begging to have him over. If I don’t initiate the contact with a parent and invite a child to play, he would never see anyone, because no one ever invites him over. It’s heartbreaking.
That’s part of why we moved close to my family, because we figured if Ga and Pa were two of his best friends, so be it. His friends will probably always come in unusual forms.
A case in point is a program they have at his school. Mentors come in and volunteer their time once a week to hang out with a child. Generally they are children that are struggling in some way, and while I know C’s mentor, “Mrs. T,” probably wonders what she can possibly teach him in terms of academics, she gives him the world in his having his own special friend at school who is only there for him. It is the highlight of his week…well, maybe next to gym class.