Archive for February, 2008

Something to think about

     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.”

February 29, 2008 at 8:37 pm 9 comments

It’s broke, so how do I fix it?

     If it ain’t broke, don’t fix it, but what if it is broke?    

    What do we do when the tools we give our children don’t work? I watched C playing ball with a group of boys the other day, and because he’s so much smaller than the other kids, he could rarely actually get to the ball fast enough. Whenever he did, another boy always wrestled it away from him. He used all the scripts we’ve given him about sharing and asking for his turn, but nothing worked. He ended up in tears on several occasions and I ended up facilitating a sharing game with the group of boys.

     I always come away from these situations frustrated with our interventions, therapies, and parents who don’t instill kindness in their children. I know boys will be boys, and I also know these boys aren’t mean kids, but when one child is the only one being singled out again and again, it crosses a line for me. I encourage C to find something else to do when he’s presented with kids who don’t follow the rules of being nice, but this is largely unsatisfying to him as he so desperately wants to participate. As adults we are able to recognize that if we’re playing with someone who is not being nice, we don’t have to play with that person anymore.

February 28, 2008 at 5:17 pm 2 comments

The oldest profession

     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?

February 27, 2008 at 3:04 pm 2 comments

C-isms

Mommy, can we go to the Liberty of Statue?

If you get really sick, do you have to go to the hopsickle?

 Are you putting that in the garbage despoil?

When I grow up, will you go up to Heaven with me to pick out my babies?

Mommy, you’re my favorite person in our fam-i-ly. Daddy, are you going to cry?

Did you know there’s sheila-monsters (gila monsters) in the desert?

At lunch today they had beef patty on bun.

….(on the way into the bathroom)…then we had rocket math and I got 37 problems right. WOW! THAT’S THE BIGGEST POOP I EVER SEEN!

When I grow up and go to work, will you drive me? Because I don’t know how to get there.

February 26, 2008 at 4:04 am 9 comments

More on acceptance, or is it denial?

        I hate birthday parties. They generally are everything C struggles with combined into one event. Eating, waiting (for someone else to open presents), unstructured play, social situations, noise, groups of boys, and mean kids. Navigating the birthday party waters is fraught with potential disasters, most of which occurred today.

     The problem is, C loves everyone. No matter the wrong done to him, everyone is a friend. I love that about him. What I don’t like about it is the future I see for him – being picked on relentlessly. I watched today as a group of boys played a game of tag, and no one was ever “it” except for C. For anyone watching, it looked like he was fully participating in the group; what was really going on was a very subtle form of bullying. He had a blast for awhile, and then he wandered off to play alone.

      The disconnect for me is that I keep thinking because he is so kind-hearted and friendly, kids will want to be his friend despite his idiosyncracies. What I realized is he’s never going to fit into their world. You’d think I was new to his diagnosis, because every time I realize this fact, it hits me like a ton of bricks. It’s not about some desire of mine for him to be popular – I just want him to have friends, so I try to teach him the necessary skills. It’s what he wants. I’m following his lead, and I never want to give up for him or on him. 

     I had an epiphany today, and it wasn’t a particularly pleasant one. I realized my child has autism. I know this in my head, but for my heart it’s always a surprise when it remembers. For all that carries with it, whatever interesting and wonderful things come out of it, it breaks my heart that what he wants the most is probably the one thing that will never come easily to him.

    

February 25, 2008 at 4:51 am 2 comments

It can go either way.

     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.

February 21, 2008 at 7:36 pm 5 comments

Friends in all places

     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.  

February 20, 2008 at 2:37 am 3 comments

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