The Roc was watching a movie this afternoon and I decided to lay down on my bed and read a book. The dog joined me and then GC did too. I had a persistent throat itch that was causing me to cough and I took the opportunity to relax and close my eyes after reading for awhile. I never nap and I never have time to lay down and read on the weekends. Because on the weekends the Roc is home and he either needs to be shuttled to social skills, horseback riding therapy, or special hockey, and if he isn’t doing one of those things, then he needs to be set up with something to occupy his time. We either need to play a game with him, play a toy scenario he has constructed in his mind, read with him, set him up with a craft, or put him in front of a movie. We try to pull out the movie card only once or twice on the weekends. It’s easier when the weather is nicer, because there are so many more choices. He rarely entertains himself without support from one of us, even on the iPad, he wants one of us to help him.
When the movie was over GC and I both knew it, not only because of the song during the closing credits, but because the Roc appeared with his usual question of, “What can I do now?” We gave him some choices, none of them involving either of us getting off the bed, and he wasn’t happy. He wanted me to get up and do something with him. (Which I have done a LOT of since winter “break” started.) He even yelled that it was my job to entertain him. Most certainly getting that from hearing me mutter that I am not an entertainer. We stayed put and ignored him as he yelled and came in our room to bang on the walls.
For a few minutes at a time we could hear him humming and moving things around in the play area outside our room before he would come back into the bedroom. During these brief times GC and I talked about our frustrations and the exhaustion that comes with this kind of parenting. How even fun things, like going ice skating, often don’t end well. We talked about the Roc’s happiness, is he happy? It seems that he is only happy when he can do exactly what he wants, when other people react exactly as he wants them to, and when he gets exactly what he wants–basically when everything is how he expects it to be…which isn’t how life works.
I talked about the one thing I wished I could change, the screaming and the rude talking. Two things really, but the rude words are usually delivered while screaming so they are intricately connected…anyway, I loath the screaming. We kicked around some ideas the Roc’s behavioral aide suggested, a jar that we could fill when he is being respectful, ignoring and redirecting, a chart, etc. I told GC we should make up a choice board with three or four things the Roc can do on his own, then teach him to do those things for a set amount of time, eventually lengthening those times to try to get him to entertain himself. GC sighed with exhaustion. Then I started to wonder aloud about food. Is there something he is eating that he is intolerant to? Because we see a change with strawberries. He will go months without eating them and then we think, maybe it was in our heads?, and we let him eat strawberries, with disastrous behavioral results.
So an elimination diet is in our future. As well as some reading about homeopathy and a visit to a homeopathic clinic I’ve been reading about. I have a need to explore some other options before I start to think about opening up that pill bottle on my dresser. Because after a few days like these, cooped up in the house, with lots of screaming, that bottle starts to look very inviting.
Later this afternoon the Roc sat outside the office door as I emailed with an autism mama friend about the clinic/drugs/autism, and we had the following conversation that shows just how hard these unstructured/unexpected days are for the Roc:
“Moooommmyyy, I feel kind of different today. I don’t feel like I usually do. I feel kind of weird and I don’t know why. I just don’t know why, but I feel kind of different today. I think my brain is all messed up.”
“You know what is different about today? This is the first day in a very, very long time that we didn’t have something scheduled. You didn’t have school or any “specials.” (he calls anything scheduled that isn’t school a “special.”) We didn’t have to go anywhere, and you did leave the house to go skating, but I didn’t even leave the house today. Today was just a do whatever kind of day.”
“Mommy…ugh, it just doesn’t feel right today. Guess what? my brain’s all messed up.”
“I don’t think your brain is all messed up Roc. Not at all.”
“Ugh, well you’ve been sitting on your bed for a long time and that’s not what you usually do….Ugh! Today is…today is just NOT fun!”
“I think today was fun, it just wasn’t scheduled out and we were not busy…but it’s been hard for you huh?”
“Yes! Today was NOT FUN!”
A little slice of our weekend. These breaks from routine are not easy on the Roc, on any of us! His conversation with me this afternoon was a reminder of how much the Roc struggles with the every day. It shows me how far he’s come, (he can tell me what he’s feeling! HUGE!) and it shows me what we need to work on to try to make him comfortable in his own skin.