At our appointment two weeks ago, the neurologist increased the dosage of one of Charlie's medications just a bit. Previous attempts to change his meds by a small (and I mean small) amount have often been followed by neurological storms so difficult and worrisome that we've been on the phone with the neurologist within days and have put Charlie back on his former dosage.
It's been just over two weeks since this latest med change. We've stuck with it and, while there have been some difficult moments (as at the grocery store on Wednesday), we've been thinking that the small med change is having some positive effects, including clearly articulated, longish and novel phrases ('turn on Internet') and Charlie attempting some new things on his own, like shoveling snow. And, Charlie has been quite amenable to waiting to do what he'd like.
On Saturday, we drove down to the beach without bikes for the first time in a long time, as it was just too cold (around 18 to 21 degrees Fahrenheit). Charlie had gotten up early, put on his swimsuit, and loaded the boogie board in the back of the car---'Well, his coat will keep the top part of him warm,' Jim had said. 'Coat' now means, of course, the yellow jackets, both of which Jim put into the back of the white car, along with his and Charlie's super heavy bike gloves. I added some hats and my St. Paul parka and off we went.
At the beach, Charlie said 'I want' several times. 'Ocean?' Jim asked; 'yes,' said Charlie. We drove to a part of the beach that is a bit more protected from the wind. Charlie got out of the car and said 'no' about changing to long pants. Then he got back into the car and said 'yes' about the pants, and reached back for the blue beach bag where he'd stowed a pair of brown pants. He took his time changing (boy with long legs + the back seat of our medium-sized car = not a lot of room to maneuver). Once done, he got out, donned his yellow jacket and gloves, said 'yes' to me pulling the hat onto his head, and ran to the beach.
Jim took the lead and we walked over the packed sand. Some horseshell crab shells were strewn by the water, along with pieces of plastic bottles and the colorful bits of a summer banner depicting hummingbird. Charlie walked briskly and earnestly for some 20 minutes before stopping, looking at us, and saying 'white car.'
On the way home, we stopped for some Mexican fast-food take-out. Charlie rested only briefly in his room after we were home and then was super-easy-going and content to wait an hour. He stood and watched the numbers count down on the Giant Timer app on his iPad and, when I noted that there were '25 more minutes' or '15 more,' he echoed me with a grin.
Later, he and I went out. We're now officially avoiding the local (and so friendly) grocery store where something was thrown by Charlie. I needed to get a few things and thought of going to a different store which does not have those particular throwable items and mentioned to Charlie that we might go there. 'Yes,' said Charlie.
So we went and, after a barreling run through part of the parking lot with some yowling (a way to release pre-store anxiety?), we went in. I needed some apples and had Charlie help me count out twelve. Then he walked over to the sushi section where, in all the years we have visited this store, he has insisted on getting sushi, even after he no longer liked to eat the sushi from this store. Yesterday evening, after scanning the shelves, Charlie looked at me and 'sushi.' I said 'ok' and then Charlie looked back at the shelf, looked at me again, said 'no sushi,' and walked on. As we passed the produce section where he used always to have to get a package of watermelon, he said 'no' when I asked if he wanted some.
We bought our groceries and went back to the car and I thought: First time in a long time Charlie has gone to the store and not had to get something he wanted for himself. And, probably the first time Charlie has not had his OCD-ness operating on him such that he HAD to get the sushi even though he did not want it---he was able to say on the spot, no, he didn't want it.
Good little, great little, gains. Maybe from the med change; swell to behold.