What We Need

     When C was finishing preschool, we experienced much angst about where to start him in kindergarten. The well-respected private school with small classes, earthy mothers who grew their own food, and teachers who believed in experiential education? The regular public school, complete with therapy services, a traditional school setting, and other children with special needs? I eagerly visited all the possibilities in our town, hoping the right school for C would reach out and grab me. You’d think we were making a decision between Harvard and Yale, given the weight it seemed to have. Yet we knew having the right environment, the right teacher, and the right feeling would make or break C’s educational experience from the start.

     Our little town was blessed with a myriad of choices, one of which was a Waldorf school. The important aspect of Waldorf education in terms of how it relates to C is that they don’t concentrate on reading until around grade 3. Since C could read already, I thought perhaps this style of learning might be good for him because it would push him to focus on creativity, fine motor skills, and less structure - all things he struggled to grasp.

     As I discussed our options with C’s preschool teacher, she bluntly shot down the idea of Waldorf education for C. “Reading is who he is, what he loves. Why take that away from him?” She was right, of course. In trying to make him more well-rounded, I was, in essence, considering forcing something on him that likely would have been miserable for him. It was my first lesson in the delicate balance between helping him gain skills and letting him be himself. From that point forward, instead of trying to make him something he’s not, I focused more on what he is.

You’ve come a long way, baby!

    We have different days at our house. Today was a Dennis (a.k.a. “The Menace”) day. It’s a day when I count the hours until C’s bedtime hoping we can all survive relatively unscathed. C is wound up, sassy, hyper and completely “wiggy.” My Nana would have said he had the devil in him today. I never know what triggers these days, and fortunately they come fewer and farther between as of late. We have various solutions to Dennis days; at the moment C is in a shower, happily contained, putting sticky letters on the shower walls and hopefully being soothed by the warm water. Nevermind we live in the desert where water is scarce. Some days our environmentalism simply goes down the drain, no pun intended.

     There’s also my favorite type of day, the “Calvin” day. An enormous fan of the now defunct comic strip “Calvin and Hobbes,” I have long adored the trademark triangle smile of Calvin that truly does appear in my C. I think Calvin was somewhat reincarnated when I gave birth. On these days, C is mischievous and adorable, doing such things that make me laugh even though I probably shouldn’t.

     Last is a Rainman day. Punctuated by questions such as, “Mommy, what is negative 200 minus negative 200?” (Um, I dunno…???), Rainman days are by far the most interesting. I catch surprising glimpses of how his brain works and things he’s learned I had no idea he knew. Lists of planets, great big fancy words such as “cartographer” or “communication,” and other random assortments of facts and figures leave me wondering if he really is a species of sponge. 

     C: What library book should I get today?

     Me: A good one!

     C: But that’s not a category. What category of book should I get?

     M: Do they have any books about dogs?

     C: Yes, mammals are in the 599 section.

!!!!

     This weekend, a girl from C’s class called him on the phone. Four times. He was very excited to talk to her, and their first (and only) conversation lasted 30 minutes. Our families know how to talk to C on the phone in a way that elicits the desired response, but for the first 5 minutes of his conversation with this girl, he was completely flummoxed. Not used to how a conversation on the phone is really supposed to go, he was lost, I think, because he could not see the face of the person he was talking to in order to put the conversation into context. It was kind of like listening to someone who speaks louder to a foreigner because they think it will make them somehow understand. “This is C____ P____,” he kept saying with increasing agitation. I’m not sure what she was saying, but they finally worked it out, and then they were chatting away. 

     It was a big moment, although he certainly didn’t grasp it as so. All the while, trying to keep one ear on the conversation, Husband and I kept raising our eyebrows at each other as we’d pass in the hallway. The next day she called again. And again. We let it go to voicemail, not quite ready for this new experience in our lives, I guess. The next morning, she called again as we were on our way out the door to Ga and Pa’s house for Easter. Husband told her C was gone for the day. We didn’t pass along the message, probably a mistake, because she chastised C this morning as I dropped him off for school. He still didn’t get it, though, and certainly didn’t seem to pick up on the fact that she was disappointed he didn’t return her call.

     Oh, I always knew the girls would love him someday - his dimples and personality are too good to pass up. But this isn’t really about the boy-girl thing, because C is completely oblivious to that. What’s so cool is that a friend is reaching out to him, outside of school, in a very big way. That’s huge, and it’s a first.

     We probably should have let him answer the phone.

     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.

     While dyeing Easter eggs this afternoon, this little song came out:

10 little eggs, the 10th couldn’t wait, he just turned into a bird.

9 little eggs, the 9th couldn’t wait, he went into another egg.

8 little eggs, the 8th saw all the other birds flying around.

7 little eggs, the 7th turned into a peacock.

6 little eggs, the 6th became a blue bird and flew away.

5 little eggs, the 5th went to a putting green.

4 little eggs, the 4th just flew away.

3 little eggs the 3rd couldn’t wait, he turned into a giraffe.

2 little eggs, the 2nd just couldn’t wait, he turned into a plant.

1 little egg, the 1st became a video game maker.

All the 10 little eggs said “hello, ciao, hi, how are you doing…..FEED ME!”

     C hit a milestone today. No more training wheels. We worked on it last weekend and I took him out again today. A soccer field with a paved sidewalk around it provided the perfect place to learn. We started on the grass and worked our way to the pavement. Daddy and I spent much time running alongside him and catching him last weekend, but today, after a few minutes, he was all on his own. I stood in the middle of the field and watched him navigate the corners, the little hills, passing of the two trees inconveniently growing in the middle of the path, cheering him along the way. He passed trash cans, fences, dogs and poles and gleefully announced he hadn’t hit any obstacles as he made his way back to the start.

     I know it’s terribly overused, but I can’t resist pointing out that bike riding is such a great metaphor for life. Fall down, get back up, get hurt, have success, fall down again, make the corner, feel proud of yourself. But even further, it so represents this child’s life. We gave him the skills, waited until he was ready, and sent him on his way. I watched from the sidelines as he fearfully, and later masterfully, made his way around the sidewalk. I cheered, a bit wistfully, as he conquered a task we’ve been working toward for years. I can only imagine how many more times we’ll do that in his life. Sometimes he’ll be successful, sometimes he won’t. Today he was.

     This past fall, C started obsessing about death. For months, the questions came out of nowhere in the middle of conversations and in the middle of the night. They came in the car and during dinner. The fear knew no bounds. It grew so all-encompassing that when his teacher read Charlotte’s Web to the class, she and I arranged for him to be in speech therapy when Charlotte died. During a tearful missive about how he loves being 6, it finally came out that he does not want to be 7 because it is one year closer to dying.     

     I finally figured out where it came from months after it began. He had watched a few moments of “Finding Nemo” early last fall, and hadn’t wanted to watch it since. This was no surprise to me as he has no tolerance for movies. Yet he asked to watch it again, so we sat down to watch it together. Early on, when the shark comes and eats Nemo’s mother, it prompted a major meltdown and the proclamation by C that Nemo would never be watched again in our house. We discussed it and I told him about the happy ending, but he wouldn’t budge. Sadly, Nemo has been banished.

     A child’s comprehension of death is no more skewed than our own, but the vulnerability surrounding it is at its most innocent. It’s a simple desire to be here, to be with everyone, not to be gone. I don’t suspect for C it has anything to do with fear of the unknown; it is, at its core, the fear of simply no longer being a part of everything.