How to tell him about his condition, and when to tell him became the question. Do you tell a two-year old about brain scans and Probst-bundles? Do you wait until he is ten and can fully process the science of it all? We decided, after much deliberation, to begin explaining this to Tim at such a young age that he would never be able to remember a day in his life when he didn’t know about ACC. We started by explaining in small ways, that his “thinker” was a little bit different from other people’s but that it was a good thing, because it made him special. Over time, we’ve come to refer to Tim’s ACC as Magic Brain, as in, “Tim has a Magic Brain.” We started with that when Tim was just about two years old.
Another example of “is it typical behavior for a child?” raised its head when Tim was about fifteen months old. Between having ACC and hypotonia, Tim struggles with sensory issues—in particular, getting enough sensory input to allow him to process the world around him. Seeking this sensory input, Tim discovered that banging his head against the wall was a great source of input—it had a calming effect on him. But, there he was, banging his head against the wall for minutes at a time. We didn’t want to stop him from getting sensory input (if that’s what was happening), but we wanted to make sure he wasn’t banging his head against the wall for other reasons.
The gibbon barked again, and Tim laughed again. Only this time, it wasn’t just a short laugh, but was a long, rolling belly-laugh, the kind that makes every parent in the world melt with delight. I don’t how much time passed as we stood there with our new gibbon friend, but every time it would yodel, Tim would respond with more of those wonderful, deep laughs.
“Tim. Timothy. TIMOTHY!” This call has become the standard in our home. When Tim was about a year old, we figured out that he has a three-second processing delay. In other words, it takes him almost three seconds to process and react to whatever information he is presented with. It also means that getting his attention can be challenging, even under the best of circumstances.
If you are a parent, or are considering becoming one, you are most likely familiar with the dreaded developmental “milestones” list. You know, the one where a group of scientists (who clearly did not have children of their own), raised a group of robo-super-children in a laboratory, and charted all of the development that occurred as those robo-kids grew older. Then, they published that list and gave it to pediatricians and other developmental specialists.
The doctor was a kindly older gentleman, with the white hair that inspires confidence in patients in hospitals the world over. He was in our room on the family floor of Northside Hospital in Atlanta, Georgia. I remember seeing his nametag as he walked through the door, but as the attending physician on the floor, I’d never seen him before, or would again, so I can’t remember what his nametag said. He’d come to us to deliver, what, in his mind, was tragic news. Our son, Timothy, less than a day old, had been diagnosed with Agenesis of the Corpus Callosum.
