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.
We have lived in many places since C was born, and in each place I have been fortunate to find other families with kids on the spectrum. Of course, that’s easy these days, but what amazes me still is the vast differences in these children. Obviously every child is different, but I find it astounding that two children with the same diagnosis can face such divergent challenges. I think that’s part of what makes it difficult for the parents of these children to find common ground sometimes, and even further, why it is difficult to find a cause and cure. Some things work miracles for some kids while the same treatment may not have any effect on another child. Yet we as parents can and should offer each other support and understanding.
I’ve seen critiques of celebrity parents who are just doing what we’re all doing - trying to help their kids in the best way they can. I’d like to cut some of them a break from the rampant criticism that rages across the web, because if nothing else, they are struggling with many of the same issues the rest of us are. In my mind, that brings up much empathy, and if they can help bring some more attention to autism in general, I think it’s wonderful.
There is so much debate within the autism community about causes, treatments, and vaccines, that I often marvel at the infighting within our own ranks. It reminds me of what’s going on in politics right now, and it saddens me so. With all the criticism, fighting, and barbs flying around, we’ve lost sight of what’s truly important. We all need to remember that it’s always about the children. First and foremost, it’s about them and what they need.
Nah, just something in the food and our genes, apparently. One of the first interventions recommended for children with speech delays is the gluten (wheat, oats, barley, rye) free, casein (animal milk protein) free diet (GF/CF). C has been GF/CF since he was 18 months old. But I’ve recently found out I have celiac disease myself (and have been GF for 6 weeks now!), as well as carrying both sets of genes that are the best predictors of celiac disease. Generously I passed on one set of these genes to C.
I am part of the camp that believes children with autism carry a set of genes that predisposes them to the disease. I believe autism is a medical disease, not an irreversible brain problem. I believe that any number of assaults on their systems can trigger the disease for these kids who seem less able to process things through their bodies. C has multiple food allergies, and his body can’t handle the complex proteins found in wheat, milk, and soy. He has some type of yet undiagnosable autoimmune disorder that affects his joints. I believe his repeated illnesses last year were due to the chemicals off-gassing out of our new carpet. We gave him the flu shot the first two years of his life because his doctor told us to – along with the two full doses of mercury that came with those shots (as well as the mercury from the flu shot I received when pregnant). He has live measles virus in his system (presumably from the MMR shot), and has extremely low clinical immunity to pneumonia. Combine all of that with his traumatic birth, and is it any wonder his system reacted the way it did?
I do not believe C’s autism was caused by vaccines. He had autism from birth, and I think the vaccines simply served to exacerbate his condition. However, we simply must demand more research into ALL the chemicals to which we expose ourselves and our children. We stand to lose too much as a society if we don’t help these kids.
I’ll never accept this. I’ll always accept my child for who and what he is, but as long as there is hope, I will never, ever quit for him. We are continually looking for new ways to help C break through the barriers in his brain and body, and I doubt I’ll ever give up the search. With each new step, be it therapeutic or medical in nature, we find something or someone that helps, and it often comes in forms we don’t expect.
There are some moments when I feel like I’m beating my head against a wall, but they always pass. When I’m at my lowest, C does something that amazes me in its power to bring back the faith. So no, I’ll never accept this for him. It makes him who he is and I completely accept him for who he is but I will continue in my quest to find ways to make his journey through this world happier, healthier, and safer. So I suppose I’ve failed the acceptance portion of the stages of grief, but that’s okay by me.