RJC likes her routine. She counts on it. Over the years she has developed some flexibility if a change of routine occurs. This came with direct teaching and practice. Still, a change in routine is not something she is comfortable with and we never know how she will handle it. It can be a really difficult adjustment, complete with hitting herself, screaming, jumping up and down, throwing things, destroying property etc. It is also possible that a change in routine can be a minor adjustment, consisting of some yelling and perseveration which includes many, many repetitions about what the new plan is and every detail thereof.
Today was one of those days that walked the thin line between the two possible reactions.
Routine Interrupted.
It's a holiday - President's Day. She had a regularly scheduled day at her Day Program, I was working as usual, but Hubby did not have to work.
Here's our routine on a regular day:
Hubby is up around 5:15 and out of the house at 6:20 or so. Now, this is a small thing but the very key to our problem this morning: before Hubby leaves for work, he will usually put my lunch in my car so I cannot forget it. Every once in while he will leave in the refrigerator. Keep this in mind for later ;)
RJC's routine on a regular days is that when she hears his wake up alarm go off it wakes her as well. She then listens until she hears him get out of bed. She comes in to our room, hops in his spot, and returns to sleep for 60-90 minutes. She gets up, plays on her iPad, helps with chores (usually either laundry or dishes), makes her own breakfast at 8 am, gets dressed, we brush hair and teeth, she gets her lunch (she makes it herself the night before) from the fridge, she gathers any recycling and/or ties up the garbage to bring outside, and we leave the house.
This morning was not a regular morning because Hubby was home. Though he tried to stay out of the way, his mere presence disrupts her routine. Since he did not need to be up early to get to work, he did not get up until 6:30. As a result, RJC slept later than usual which had her confused. She comes to our room while looking at her watch and is unsure of what to do. I say, "Do you want to lie down for a few minutes?" She looks at me doubtfully, says "yes", but a few minutes later is ready to get moving. Needs to get back on schedule. She plays on her iPad. There aren't any chores because our timing is off. She makes her breakfast, etc. Things are now actually moving along quite well.
Then comes the wrench in the works. Hubby had already put my salad in my car, but his salad will still in the refrigerator. The two salads are NOT exactly the same. His has more of a variety of veggies, and they are veggies that I do not enjoy.
RJC finds his salad and assumes it is mine. I explain that my salad is in the car and that this salad is dad's so it stays here. She is confused and not happy. Too much language, too early in the morning. In retrospect, I could have immediately taken Hubby's salad and put it in the downstairs refrigerator, then grabbed mine from the car but hey...it was early and I had already started down the path of no return.
She was trying to wrap her head around this salad issue. I was trying to explain the situation and we were both getting exhausted. She was getting loud. I was getting repetitive and feeling like a hamster on a wheel - round and round and getting nowhere. Eventually I did indeed take Hubby's salad to the refrigerator downstairs and said, "Let me show you mom's salad in the car." Eventually, I convinced her to come with me to the car, showed her the salad, and all was well. Mostly.
She was loud in the car, scripting from Barney and having a tough time settling down. Luckily it's a bit of a ride, so by the time we were at her Day Program she seemed relatively content. I would guess it was the realization that she was about to be in a place where she could anticipate what she was doing and what was expected of her.
It is so interesting how such a small thing to us can be such a very big thing to her. Hubby and I were quite thrilled that none of this resulted in a smashed wall, a thrown telephone, or any self-slapping. She was truly showing some
self-control. She was anxious and getting loud but was also trying hard to understand the situation and deal with it.
Progress for sure.
Food for thought. We have a tendency to allow her routines to take over without noticing. We all just fall into our roles. I also think that most families are like this. We all have our tasks we need to do before work or school within a limited amount of time, and the way we get them done in a timely manner is to find a routine that works and stick with it. Is this necessarily a bad thing? Definitely not. This is the sort of thing that helps a family function.
For our gal, though, routine is a double-edged sword. On the one hand it is extremely helpful. Daily life is complicated for her. She struggles to get through a day. There is so much language she cannot understand which means so many things we ask of her cannot be explained. If her day is made easier for her by letting her have some control and creating routines to help her with that control, it seems to be appropriate.
On the other hand, life throws curveballs. If we do not prepare her for changes or surprises, we are not preparing her for the long term. At some point she will probably be in a situation when other people will need her to make a change in her routine. A world when Hubby and I are no longer here.
So - time will tell. We will need to give some thought as to how to best help her develop flexibility while still allowing her to have comfort in her routines. Tricky? For sure. Important? Absolutely.
Ironically, we need to make flexibility a new routine.
