Maura is watching “Tangled” for the 3947th time. Approximately. Honestly, it’s a bit of a break from watching “Move It” (aka Madagascar).
Life with Maura means watching the same thing over and over and over and over and over…and doing things over and over and over and over and over…
When she was little, I made a crack that it was like living with a tiny Alzheimer’s patient, because you could repeat things a thousand times and she wouldn’t remember any of it. After she had her first visible seizure, we had an EEG done and the doctor walked in and pointed to one of the dots on her head and said “She’s having seizure activity right here.”
Yes, I went home and looked up that area of the brain. Motor planning and memory.
Yep. That made perfect sense. Especially after a few weeks on seizure meds, her balance improved 110%, she was speaking more and remembering things she was taught without the months of repetition.
Of course, it wasn’t a miracle cure. She still doesn’t always get things. Concepts are the hardest for her. The whole concept of time? Yeah, throw that out the window. She doesn’t get things like “tomorrow” or “yesterday” or “later”. I spend so much time saying “First, we will do this, THEN we’ll do that” and repeating it constantly. She sort of gets this.
This Doctor explains Maura’s concept of time pretty accurately –
Maura has no concept of time. She has vague ideas of it – now, first, then, later, one minute. But with her, it’s mostly “now”. You can’t say to her “We’ll do that tomorrow.” because for her, there really is only “today”. When she wants to watch a show, she can’t understand why it’s not on right now. When she feels hunger, she wants to eat right now. I’m still working on the concept of “dinner’s almost ready” – that usually ends up with me dragging her from the kitchen screaming, because she doesn’t understand why she can’t eat NOW? She’s hungry NOW! Maura doesn’t remember watching “Madagascar” 5 times in a row, she just wants to watch it again. Now.
She does swimming at school on Mondays. She loves it. Monday morning, I can get her up out of bed quickly by saying “It’s swimming day.” But some weeks, she’ll drag around her swim gear for three days, hoping that maybe it’s swimming day again. She’s just now getting days of the week – but more in the sing-song kind of “Mondaytuesdaywednesday” sort of way. Not “On Friday we do this.”
If Maura has a meltdown in public, I have to deal with it right then. Waiting until later means she’ll forget what happened – she moves on quickly from things. Once, recently, she threw a huge fit in a store, and I marched her out of the store, into the car, straight home to sit on a stair – but she was still in the moment screaming at me, so it worked. If she had calmed down, she would have moved on, and stair sitting would have been pointless. For the most part though, time outs happen where ever. When we were in Scotland, Maura threw a fit about something, and so there she sat on a bench, in the middle of Edinburgh, not happy with me while I waited for her to calm down. Good times…
It’s funny, she does understand bedtime. But we’ve done that every night for the past almost ten years. She is able to follow routines at school, but I don’t know if she can anticipate things like “Oh, it’s almost lunch time.” Is it “Oh, I’m hungry, feed me now!” or an actual concept of time.
Life with Maura means living in the Now, living for Today, because for her, tomorrow’s a myth. It’s just here, now, today. She wants something, she’d like it now. She needs me, it’s now. Patience is a virtue she does not have.
It can be exhausting.
Her brain is such a funny little thing. We’re constantly amazed and impressed with what she does know, what she can do, how she can give us directions to the shopping centre or know that she is to never ever touch Dad’s computers. And yet, if you ask her which day she can bring the iPad to school, she’ll give you that big blank owl-eyes look.
Such is life here.