A quick inventory of the Risperdal bottle, and a cautious reading of its label has confirmed that J’s last dose of med is on Saturday, December the 12th at some time around 9 a.m. Based on previous experiences, and on extremely intricate calculations that I cannot divulge because they involve very convoluted logic, J will have a crappy Second, Third, Fourth, and possibly Fifth Day of Christmas. By the time he goes on Holiday Break, his teachers, aides and classmates will have earned a much deserved break from J’s angst and moodiness. (Memo to me: make the gift cards slightly nicer this year…call it “appreciation” but really mean “atonement.”)
It’s not that I don’t have faith in our ability to navigate this transition. It’s not that I’m not sure J is pretty much ready for this. It’s more that I’m always wary of the sudden (yet gradual) shift in the brain’s chemistry when an outside element (that has been there in greater and then sporadically reduced quantities) over the course of nearly six years. There’s always that iffy moment when J’s anxiety peaks because his body is looking for something that is no longer there. Those three or four days can be grueling for him.
In preparation for this, we are trying to keep things organized, and we are hoping to create a solid routine for J with plenty of opportunities for escape if he is inclined to be on his own and away from us. Insufficient attention from TGG continues to be a problem, but we cannot do any more about that than we already have done. Last Wednesday TGG took J to the movies, and J ended up paying for the pleasure of his brother’s company; he bought the movie tickets and the popcorn and soda. Of course, J was over the moon with joy because his brother was finally paying attention to him, but…
Dada is up to his neck with work. The project he’s been engaged in since he got hired at the hospital is supposed to be done by the first of the year, but between the regular work each team member has to do and the tasks involved in completing this process, things have not been going as smoothly as they should. Long days, traveling, stress…it is shaping up to be quite a lulu of a holiday season.
The Thanksgiving break is a few days away, and we’re mostly ready for the holiday. TGG has to work when the store opens at six, and Dada will forgo the traditional Friday day off to go in to get things done for his project, but that’s something we can deal with. I will probably engage J on decorating wrapping paper for Christmas. I am planning on a little forest of Christmas trees (made with paper mache cone shapes and tissue paper) for the living room, and J loves doing those things so we’ll work on that, too.
I am trying to keep things low-key because I have not been feeling well. It’s nothing serious, but I’ve been less enthused, energetic, and sprightly than usual, and I think I need to take things down a notch until I’m feeling up to my usual. The Christmas shopping is 85% done (it’s always the little things that jumble me up,) and we have our menus clearly planned for all upcoming holidays. I’m skipping Christmas cards, and I’m going to focus on making our Christmas a nice quiet one that will be conducive to J adjusting to life after Risperdal.
There WAS life before Risperdal, and parts of it weren’t so nice, but I think its time is up. Let’s face it, if we compare J to a car, he’s been driving around on fumes of gas rather than a full tank for a while now. I’m sure that there will be not-so-nice parts to life after Risperdal, but that can be said about everything in life. My job in all this is to try my best to help J face yet another transition in life. That I am taking it slowly, calmly, and trying to not overexert myself should not be construed as being unprepared or being cavalier about it…
We are still wearing a ton of bandaids, but we now choose to go out without taking our brace with us. We have even gone out for excursions without the band-aids. I don’t foresee (especially with the anxiety that overtakes him when the med is reduced) that the band-aids will go the way of the boxing gloves, but I do foresee that J will make entirely personal decisions regarding certain things he carries, wears, clings to, and so on and so forth.
If there is one thing I’ve learned about J it is that he is a lot more malleable than we sometimes give him credit for, and I am glad that he has become increasingly comfortable with being stubborn, and with negotiating. Does that make sense? I am glad that my son can now stick to his guns without being aggressive, and I am glad that he can negotiate without feeling defeated. Whether it’s about band-aids (negotiating longer and longer periods without them,) or a pair of pants that he was adamant about not wearing, or accepting that he either has his two slices of pepperoni and one slice of cheese OR his cookie OR his two squares of chocolate, J has become an easier person to live with over the past four years.
Furthermore, the change effected in his relationship with food over the past two years can only be categorized as astonishing. The same kid who would only eat Ramen noodles, mac and cheese and pizza now happily picks the scallions out of the Pad Thai and eats them first. I have placed a ramekin with broccoli, cauliflower and carrots in front of him, and J has consumed them with a very modest amount of Ranch dressing. That he loves fish, eats legumes without complaining and drinks apple juice (something that used to cause melodramatic bouts of gagging and near hurling in previous years) is cause for rejoicing.
We’re in good shape. Anticipation, but the good kind, is in the air…
We’ll see what happens next…….