We travel by car about an hour a day for commute time. Long before we had a diagnosis, we bought a car with a DVD player in it to keep the little guy occupied. Soon enough, I learned that a purchased DVD would not work out for us. Why? Because my son had “peculiar” tastes regarding what would be acceptable viewing.
In other words, if the smallest section of a program was offensive to his senses for whatever reason, we could not watch. Talk about censorship. Conversely, if there was something he was obsessing on, he would ask for it to be rewound over and over for eternity. If I didn’t rewind, the requests did not stop. They increased. They got louder and were accompanied by crying. The crying morphed into meltdowns.
In the confines of the car, those meltdowns are nasty. Turning off the DVD player was not an option – see above. My solution was to burn my own special brand of echolalic DVDs. Keep in mind that this was a pre-diagnosis, trying-to-make-the-drive-tolerable, mom-created “accommodation”. Every couple of months, as his tastes for different programing changed (and while I added in the “healthy” Sesame Street stuff), I would make a new DVD. After a while, the player, which holds six DVDs, got full. I started putting the old ones in the center console of the car. That was all I could manage and get anywhere on time.
In the last couple of weeks, the little guy was asking for programming related to his latest resurrected obsession, “planets”. Simultaneously, I was cleaning off a counter and found our multi-volume set of “Space” from the Discovery Channel. He insisted on watching “95 Worlds and Counting”, a fascinating program about what life would be like on the moons of other planets, with great visuals of simulations for what the moons would like from the surface.
That was short lived.
He then asked for kid’s shows that involved space or planets. Blue’s Clues planet song, an episode of Jack’s Big Music Show with “Spunky” the alien, that kind of thing. But for me to make the DVD, I have to have time. I didn’t. So, one morning I just put in an old DVD.
The DVD was probably from two years ago. I felt like I had been transported to one of the 95 Worlds and Counting! Listening to the DVD from the driver’s seat, I felt like I was back on that alien world from before the diagnosis. I had forgotten how bad it used to be.
This DVD was a horrific memory refresher, and a clue of its own about how far we have come. It started out with the theme song to The Fairly Odd Parents. Over and over again for five straight minutes. Do you know how many times I had to hear “Timmy is an average kid”? Like some awful song that is stuck in your head when you’re sick.
This was followed by an old Kid Cuisine commercial with an alarm blasting and a fire truck which was about 20 seconds long and repeated on the disk about another five straight minutes. That made The Fairly Oddparents looks like paradise. You know – the same theme went on and on. Every little snippet of a song or a 30 second commercial played over and over again for the whole disk.
I don’t do this anymore. Tootles must now must watch a whole program through. There is no rewind. He gave up about a year ago trying to get me to bow to his will. Playing this disk in the car was an unhealthy reminder of what used to be. It’s like I stirred a well settled, pot and muddied it up.
We watched that disk in the car for about three days. By the third day, he brought up our bad nanny – who has been gone for a year and a half now. He started asking for a rewind. I thought about destroying those disks. Instead, I’m going to put them away. Away from him. I’m going to come back to them someday when I need to remind myself we have made gains.
I have to clear the stream again. I don’t want to go backward. I know these are relatively minor things when I think about the big picture. Nevertheless, the wounds from those days are still not healed. For either one of us. Opening them was bad and good. Certainly, not good enough to say it’s over, but enough to show me that progress should never be taken for granted.