Archive for January, 2008
Sometimes I marvel at how far away I am from what I thought my life would be. I know I am doing “the most important job in the world,” but the cliche doesn’t really assuage the odd disconnect I feel when I read the alumni notes in my college and graduate school bulletins. It’s in those moments when I become painfully aware that I’m not really sure who I am anymore. I don’t know what, exactly, I would be doing if I weren’t raising this child, but somehow I feel as though I’ve completely lost my sense of self. I suppose that’s both the pain and beauty of being a parent, and like everything else about the job, it is magnified with a special needs child. I’m so wrapped up in my child I don’t know where he begins and I end. My brain recognizes the inherent conflict and danger in this, but my heart wouldn’t have it any other way.
Like every parent, I recognize the importance of discussing the dangers of the world with our children. I struggle, however, with balancing the risk of an occurrence with not only the stress C will feel after a discussion about a potential dangerous situation (he is quite obsessive and worries a great deal about things), but also with him not recognizing a dangerous situation for what it is.
C doesn’t generalize well. When we tried to teach him about strangers, he asked for months if the lady at the drive through at the “M” (McDonald’s) was a stranger, and could he ask her for ketchup? We tried to explain that adults at school were always safe as therapists and evaluators are constantly coming to get him from class, but then I worried he would think the creepy guy standing at the playground fence was a safe person to approach. He views everyone in the world as a friend, and while I love that sweetness about him, I also want him to be safe.
When his teacher discussed fire safety, we wrestled with what kind of family emergency plan to make. If we teach him how to get out of his windows in the event of fire, he’ll be ringing the doorbell at our neighbor’s house at 3 a.m. simply because his room feels warm. He just doesn’t make the connections most people make, despite the fact that he is very bright. I used to joke that people who were very intellectual had no common sense (and vice versa), but I’m seeing the truth in that with my own child, and it scares me for him. It’s as if every single situation needs to be treated individually, and it makes teaching him how to respond extremely difficult.
For me, the bargaining stage of grief was brief, twisted, and selfish. It wasn’t “give me this and I’ll do that” kind of bargaining; it was far more convoluted in nature. I remember when he was born, C was immediately taken away and was on a ventilator 1/2 hour later. I struggled so much with recovering from my c-section that I didn’t see him again until he was almost two days old, and then I saw him only because they were airlifting him to another hospital. I remember thinking that if he died and I hadn’t held him, I would be less attached to him and therefore would feel his loss less. And somewhere, in the deep recesses of my mind, I was thinking “If don’t love him, God won’t take him away.” As if he wouldn’t attract God’s attention if he weren’t loved. What kind of vindictive God was I thinking about, exactly, and where did that image come from? I know now I was trying to shield myself from the unimagineable pain I would feel if this child died, but it’s strange to me now to see how my mind was working. It’s bizarre and difficult to admit, but it’s only now, years later, that I can recognize what I was thinking at that time.
There is a charm about C that captivates people. (Actually, he captivates adults; children haven’t yet come to appreciate him.) He talks with people in the grocery store, at the post office, and everywhere else we go. Teachers I don’t even know stop me in the hallway at school to tell me something cute he said to them. He calls out, “Hey, pretty lady!” to about every woman we see, putting smiles on the faces of elderly blue haired women in the aisles of Safeway.
Today, however, he turned that sweetness and light toward me. I haven’t showered and I’m in sweats as I’m watching an old rerun of “America’s Next Top Model.” When he asked what the show was, I told him it’s about pretty girls. He said to me, “You’re a pretty girl, Mommy, you should be on that show.” Then he added, “Wouldn’t it be cool if all the girls in the world could be on that show?” I was struck with his amazing perspective on seeing the beauty in everyone and how easy it is for him. Of course he probably doesn’t yet possess the level of insight with which I’m crediting him, but perhaps it really is just that simple.
I don’t think I’ve ever really hit anger. I’ve certainly been angry at people along the way; a teacher who walked out of the room chuckling while I was struggling to get my tantrum-ing child out of the building, a superintendent who saw no problem placing a charter high school in the special needs preschool facility, the ob-gyn who didn’t take my autoimmune issues seriously. I’ve just never been angry at the world, at God, at whatever powers gave me this challenge.
I suppose that sounds pious, but believe me, it’s not.
I guess I just don’t feel like I deserve to be angry. (File that under the “it could be so much worse” saying.) I’m almost afraid if I allow myself to get angry perhaps it will in fact get so much worse. I suppose that places me squarely into a category of people who try to fly under the radar for fear of being noticed by some all powerful being who equalizes things when they get out of balance. There’s another part of me who prays to God not to teach me any more lessons, not to send me any more character building experiences, not to give me any more challenges through which I must find the way. It’s not that I don’t need any more of those things, but frankly I’m kind of tired.
I’m not sure we were ever in denial that something was going on with our child. (Is that denial I hear?) Recently, I’ve heard more about early warning signs for a child with autism. It’s amazing to me that no one ever said the word “autism” to us until he was almost 3 years old, because it appears so obvious in hindsight. I don’t even remember it ever coming up as a possibility; everyone seemed to be operating under the premise that he was premature and would catch up.
Even after we realized he had autism I believed, somewhere deep in my heart, that he would still be completely fine. I thought C would graduate early intervention and start kindergarten as a “typical” child. He was (and is), after all, an amazingly bright, sweet child with a real capacity for love. This doesn’t sound like autism, does it? Again, denial. And certainly some ignorance thrown in. But I’m beginning to think that the denial stage of grief should perhaps be renamed “hope.”
I just realized that there are some people reading this that don’t know C’s history, so I want to clarify my last post with the list of diagnoses. Some of them have resolved. The first dozen or so were at birth and resolved while he was in the NICU. I didn’t mean to leave the impression that every single thing on that list is ongoing.
I’ve heard people talk about the five stages of grief in terms of dealing with a serious diagnosis for a child. You grieve for what they might have been, the loss of normalcy, the things you thought you could take for granted. I, for one, feel like I have gone through the stages of grief in varying degrees multiple times with each new issue that arises. I change from stage to stage in any given year, month, day, and even minute. From day C was born (and subsequently nearly died), we’ve been dealing with one thing after another. That’s not to say there haven’t been good days; happily, there have been many, many of those. But as each new issue started, I kept thinking “This will be it. This will be the last thing to happen.” I no longer say that to myself.
Here’s the list: respiratory distress syndrome, pneumothorax, pulmonary interstitial emphysema, pulmonary hypertension, hypotension, sepsis, apnea, bradycardia, oligihydramnios, prematurity, tracheomylacia, global developmental delays, oral motor dysfunction, failure to thrive, hypotonia, sensory integration dysfunction, reflux, reactive airway disease, asthma, left-side weakness, ankle pronation, atypical tongue grooving, toxic synovitis, ataxia, verbal apraxia, oral apraxia, plagiocephaly, food allergies, unspecified autoimmune disease, impaired methylation abilities, yeast problems, absent glutathione production, high functioning autism, developmental coordination disorder, hyperlexia.
C thinks outside the box, no doubt about it. Once, on a speech therapy test, he was asked to group two of the following three items: an apple, a banana, and a car. He correctly grouped the apple and the banana, gaining him a point, but when asked why he grouped those two, he said “Because red and yellow make orange.” Needless to say, he lost a point for the answer that just didn’t fit into what was expected on this standardized test.
It’s hard to argue with that logic, however. He is absolutely correct in his answer. It’s both very clever and heartbreaking at the same time. I applaud his creativity, but in the very same breath worry that the mainstream world won’t always appreciate his thought process (and should I even care about that?). I don’t want his charm and uniqueness educated right out of him, but I fear that’s exactly what will happen. And worse, I feel powerless to stop it.