Copyright © 2014 Stephen Hawley, all rights reserved.
Alice has many good days. By and large, she’s a very friendly, sweet, loving girl. So then there was yesterday.
Alice, as mentioned before, had a stroke when she was born that lodged in her frontal and parietal lobes as well as her pons. The parietal damage explains her difficulties with her right side, especially her right hand. The frontal damage is likely causing problems with executive function. In her case, there is a huge set of gaps between “I could do it”, “should I do it?” and “damn the torpedoes, full speed ahead.”
This has always been problematic. For example, in grocery shopping, she had a tendency to grab everything. This took years of repetition and a list to sort out. Still, every day I see her reaching for something in the house that is clearly not hers for which someone (likely her brother) would be unhappy with and we run through this litany:
“Alice, is that yours?”
“Did you ask?”
“Should you be touching it?”
“What should you do?”
“Leave it ALONE.”
Yet, even though we go through this, there is still the gap where “should I?” doesn’t seem to ever enter into play. It’s the reason why we have a lock on our bedroom door, after getting woken up so many mornings. It’s why our entertainment system is controlled by a smart switch after finding her watching “Mirror, Mirror” at 4:00AM with the volume up. It’s why our thermostat is locked through software. It’s why i lose a lot of sleep wondering if she will ever be able to live independently when these simple gaps exist. Another example is when we have house guests, Alice is so excited that she unpacks for them. Nobody has much privacy under those circumstances.
Yesterday, I caught her with her hand in the proverbial cookie jar several times for things that she’s be asked/warned/told several times not to do, resulting in time outs which in turn led to much indignant screaming at the apparent injustice.
There were bright spots. We (as a family) took advantage of the mild December weather and built some raised beds for our garden next year. Alice helped nicely. She carried wood for us and when she wasn’t helping directly she was (mostly) playing with her brother nicely.
At the end of the day, E was setting up a Chromecast device on our entertainment center and I could tell it was a little frustrating. Even with direct words to wait and not touch, Alice started to monkey with remotes. After the second time, I came down to intervene.
“Alice, what did mommy say?”
“Did you touch that?”
“Nnn…o.: (at this point her brother was about to answer that for her, but I gave her The +3 Serious Raised Eyebrow of Bullshit Detection) “Yyy…es.”
“Ok, Up to your room.”
After a half hour of yelling, I heard her calling, “Daddy! I stuck!” Although her words weren’t intense, she was repeating them. I went upstairs and saw that she had removed the heating register and jammed her foot into the duct in the floor. “Daddy, I stuck.”
“Alice, I am so angry at your behavior.”
“Alice, is this yours?”
“Is it a toy?”
“Should you be touching it?”
“You know all these things, but still you do.”
Yes, I lost my temper. Who wouldn’t?