Remembering...

I sit here typing these memories, and thinking back to the days when I first started noticing something - that elusive something - that wasn’t quite where it should be with Daniel. I remember asking his pediatrician at a little over a year old if I should be concerned that Daniel only spoke a few words. I remember the doctor smiling and telling me, "He’s the baby. He has an older brother who speaks very well. He just doesn’t have to talk. He’ll catch up." I remember being reassured and a little pleased that Daniel’s babyhood wasn’t quite past.

I don’t remember other symptoms or signs during that time. I look back at my diaries and see where he had the occasional bout of sleeplessness, but nothing profound jumps out at me. He seemed just like any other infant turned toddler, except he didn’t say quite as much.

At two, I asked the doctor again if I should be concerned, and was told basically the same thing. At three, I was worried. I took him to the doctor for a checkup, and asked again. This time he said we should stop talking for Daniel and make him repeat us, but we shouldn’t worry as there weren’t really other indications of any serious delays.

At almost four, I took Daniel to the doctor and insisted on a referral for a speech/language evaluation. Daniel echoed some of the words we said, but still didn’t often spontaneously speak more than one or two words at a time - never sentences. He’d also begun to use this strange gibberish sounding speech. I called it "fill-in words". I didn’t know what else to call it. He’d attempt to make a sentence, but just didn’t have the vocabulary to do it, so he’d say the one or two words he knew, and fill in the rest with the gibberish. Later, I learned that this is called jargon speech, and the echoing he did is called echolalia, and they are both ’red flags’ of autism.

During this same time, Daniel had begun lining up his Hot Wheels cars in a long, single-file line from my kitchen to my living room. He’d make sure they were meticulously straight, and organized by color or style, sometimes both. If we moved one car, or accidentally knocked one crooked, he’d scream as if we were beating him.

He’d also begun the bizarre behavior of bending forward at the waist, putting his forehead on the floor, hands extended behind his back, and he’d walk around the room that way - head against the floor, like a big inverted V.

He had taken to spinning himself, or little beaded dog-tag style chains held in front of his eyes, almost constantly. He wouldn’t look at me and hold my gaze anymore. His eye contact pattern was more of a look/look away/look/look away style. It disturbed me.

He was in daycare at this time, and he didn’t play with the other children. He walked around the periphery of the playground, always alone. He was hard to control in class and the teacher was at her wit’s end. He insisted on sameness as much as possible, and often screamed or cried when something changed. Once, at 3 years old, his teacher had gone on vacation, and a substitute was brought in to fill her place for the week. I had surgery during this week, so things were a little different at home as well. The day after my surgery, I received a phone call from the daycare. Daniel had had an accident in his pants and had smeared feces all over himself, the bathroom stall, the floor, and was in the bathroom stall screaming and crying. I wasn’t able to go take care of it, so I called my mother, who rushed there to find him standing in the stall looking wild-eyed and frantic. She calmed him down, cleaned him up, cleaned up the smeared feces, and took him home with her. At the time, I thought the smearing was his attempts at cleaning up his accident. Now I know that it was a cry for help.