What We Need

     “Mommy, what does `under sunny skies’ mean?” C asked this morning as he was watching the weather channel, his favorite. Knowing his adherence to the literal, I responded that we are under the sky and the sky is sunny; therefore, we are under a sunny sky today. I’m not sure he really understood, and I consider that my malfunction as opposed to his.

     I’ve struggled to answer these types of questions for years. For a child whose educational goals continually target his inability to effectively answer “wh” questions, he sure asks a lot of them. Starting with “What is justice?” when he was 4 and reading the words on coins, I have answered these questions to the best of my ability, yet I somehow can’t help but think C is vaguely dissatisfied with my answers. Even worse, when I answer, “They just did it that way” (my version of many mothers’ “Because I said so”), I feel like I’m failing him. I’m really not sure why the back windshield wipers on the subaru outback impreza go one way while the ones on a volvo cross country go the other. I could call and find out, probably, but I’d spend two lifetimes searching for the answers to his constant questions about things that seem to have no particularly obvious answer. 

     I feel tremendous responsibility to answer these questions for him, probably much like other parents feel having the loaded, dreaded sex discussion with their children.  Yet I’m pretty sure when that conversation comes along, it will seem completely anti-climatic (no pun intended) after all this.

     It is amazing how your circle of friends change when you have kids. You find yourself bonding with people you might never have known if it weren’t for your kids’ connection to them. Having a child who is “special” has brought me all kinds of friends I might have never met otherwise. Friends who have become integral parts of our lives simply because of our shared experiences, even if they aren’t the same experiences. These are the kinds of friends you don’t have to explain anything to if your child has a 2 hour temper tantrum at their house or can’t eat anything in their kitchen because he’s allergic to everything. These are the best kinds of friends, even if the only thing you have in common is your kids.

     For a long time I completely surrounded myself with these friends in a protective cocoon. I couldn’t be around people whose kids were developing “typically” because their lives were so different than ours, and it hurt. We were so worried about our child and had no idea what was happening with him. It seemed like the whole world of parents I used to know took everything their child did for granted while we were teaching C how to swallow food. Not true, I know, but it felt that way.

     Even though I have made it back to the world where one has friends simply for friendship’s sake, those somehow connected to the world of special needs remain the best. There’s just something about being around people who have an understanding of what is happening in your family that is both empowering and relaxing at the same time. Autism can at times make for strange bedfellows, but I’m thankful it has brought us some dear friends.

     Watching C’s humor develop has been, well, humorous. I remember the first time he really belly laughed as a baby, and it was very, very delayed, so we were waiting for it. He was a happy baby, but he just didn’t laugh. I still revel in the moments when he does laugh with all he’s worth. He’s definitely learned that he’s supposed to laugh when other people do, as evidenced by him cackling in response to adults laughing in another room - as if he was part of the conversation. Which, of course, prompts another laugh by those adults.

     Lately, he’s been testing out his own jokes. “Knock knock” jokes are beyond him, and plays on words are most definitely not understood. But he’s trying out silly names for people to see if they get any response. They are generally spontaneous sayings created from whatever he happens to be seeing at the time. ”You’re a water slide, Mommy.” “You’re a kitchen sink…a color catalogue…a toilet paper…a bouncy ball.” And then he waits. To see if anything sticks. If we laugh, we can guarantee the name will be repeated at least a zillion times.

     And that’s how I became a green tree.

     Imaginary play can be slow to develop in autistic children. Like C’s language of echolalia (repeating things he’d heard elsewhere), he seemed, for a long time, only to play in scenarios taken from somewhere else. He would painstakingly recreate a Thomas the Train episode with his toy engines, no small feat in and of itself, truth be told.

     Slowly, however, signs of imagination in his play emerged. While he was and is still rooted in a very concrete world, I see moments of creativity and even downright exaggeration appearing in his thoughts. “There was a fly in my room. Pause. It was THIS big. (Imagine the gesture from the guy telling the fish story inserted here.) I shoo-ded it out of my room. It almost broked the window going outside.”

     I laughed out loud at this one. Laughed because, well, it was funny, and laughed because he was so earnest while telling his tall tale. I could picture him years from now shooting the breeze with the guys and perhaps even getting away with it.

     And that, I say with delight, is THIS BIG.

    When something happens, good or bad, C often tells me the story in bits and pieces, sometimes over a period of days. Because his perception of events is often different than other people’s, he sometimes doesn’t tell me what I need to know in order to fully understand the situation and help him process it. I’ve grown better at asking the right questions to get to the bottom of something while still allowing his telling of the story to be in his way.

     The other day at school, a boy in C’s class called him a “loser.” The interesting piece of the story here is that C was running to get a ball at the time, and he got it. He took the word “loser” so literally as to mean he lost the race to get the ball. His point was that he DID get the ball, so he was a “winner.” He was upset, not because the boy meant something far more all-encompassing than C’s understanding of the word, but because the boy was technically wrong. 

     I was so thankful in that moment that he doesn’t comprehend the connotations of the word. I was so grateful that he sees things in black and white so he didn’t understand how awful and powerful a word it can be. For him it’s about the definition, not the nuance. Yet someday he will understand that word, and all its negative undertones. For that, I fear, he is sorely under-prepared (aren’t we all?). I can only hope when I told him that he is in fact a winner, it, like the other positive things we try to say to him whenever possible, settled into his psyche enough to help counteract some of what will surely come down the road.

     I’ve never felt like C’s diagnosis of autism was the end all diagnosis. In my mind, there’s more to the story. I remember when he was a baby, long before the word “autism” came into our lives, I used to sit up, late at night, putting different combinations of words into google. Thinking if I just came up with the right grouping of words I might find out what was going on with him, I’d pour through the latest neurologist’s report looking for keywords I might try. “Low set ears, wide nasal bridge, small feet, sensory issues.” “Failure to thrive, developmental delay, easy skin scarring, low muscle tone.” “Delayed speech, motor planning problems, food allergies, asthma.” As if I could put in the ingredients and out would pop the name of the dish.

     What came out of google were unpronounceable, horrible maladies no one should ever have to know about, let alone experience. Pictures of children who didn’t live past the age of one flooded my screen, and I cried as I read about syndromes and disorders I knew my child didn’t have. Yet the researcher in me wanted, needed answers, so I kept searching. I was never one who didn’t want to know; to me, knowledge is power, and I wanted someone, somewhere to be able to give us answers. 

     Of course no one could.  We have certainly closed in on many issues that are likely the explanation of all the things that have happened to him since his conception, of which autism is only a part. But now the google searches are done, the medical records are stored in a notebook that accompanies him to any doctor appointment but otherwise sits mostly closed, and I have a stack of development and autism books that sits unread on my bedside table. Yet what I know now, and have come to accept, is that we’ll probably never have an answer, because to have an answer, we’d have to have a reason, and I don’t think we’ll ever have that.