I have a new client for whom I’ve been providing occasional respite care for the past month, and she has taught me so much that I don’t even know how to start putting it all down. She is a 10 year old girl who lives with her mother and younger sister, age 6. She’s brought up more questions than I know what do with, and I’m still a long way from understanding her and how best to assist her. A lot of my questions, though, are along the line of “why don’t we have better ways, as a society, of providing children like her with the assistance and support she needs?” I have part of an answer, and it’s a disquieting one.
But let me back up a bit.
I’ve also held off blogging about her until I could come up with an appropriate nickname. I planned at first to call her Princess and her sister Cheerleader (for reasons explained below) but I worry that those nicknames may spark some sibling rivalry if Cheerleader hears them. So instead I’m going with Curls and Tangles, as the younger girl has gorgeous corkscrew curls and the elder has more loosely curling hair that is always coming out of its braid and getting in her face (like mine!). I also think that the ordered/disordered contrast between the terms nicely mirrors the relative fluency with which the two girls are able to interact with their world so far.
Here’s what I wrote the night after meeting them for the first time [current thoughts/corrections are in square brackets]:
Princess [Tangles] is 10 and has [let me change that to “is diagnosed with,” as her mother and I are increasingly convinced that at least item 3 of the diagnosis is inaccurate] ataxic cerebral palsy, global developmental delay, and profound intellectual disability [“mental retardation” formally speaking, but most people with that condition consider the R-word extremely offensive], all of uncertain etiology [i.e., no one knows why. She also takes medication to control mixed partial seizures and is given a sedative as needed for anxiety that shows itself in self-injurious behavior– more about that later]. Cheerleader [Curls] is 6 years old and typically developing [more or less. She’s very active, energetic, and spirited. I suspect some people would diagnose her with ADHD]. Not surprisingly, to anyone who knows me, I like Princess’s company a lot better than her sister’s, though objectively speaking I seem to get along with them both equally.
Both are very lovely girls. Cheerleader is still small enough for me to lift easily (I spent a while entertaining her by carrying her around on my shoulders), with an engaging smile despite missing front teeth, while Princess is more robust in build (and no, I’m not using that as a euphemism for overweight — she’s just a lot sturdier) and appears to be on the verge of puberty. Both are cheerful and rambunctious, and enjoy bouncing on and off the sofa.
Cheerleader is named such because she does in fact do cheerleading, and is constantly showing off gymnastic moves to me. Princess, like her title historically implies, is a beautiful and well-cared-for girl who doesn’t know how to do many things for herself, and stoically submits to her sister doing her hair and otherwise rearranging her physically. (I made the mistake of letting Cheerleader “style” my hair, too, and later had to spend ages untangling it.)
Princess does not yet use any standardized method of communication, although she appears to understand the basics of what’s going on around her. Her cerebral palsy strikes me as mild, and isn’t immediately apparent in her behavior. She can handle toys and other objects relatively well, though her hands have a constant tremor to them. She seems to enjoy vocalizing (sometimes with startling excited shrieks), though she uses a limited range of phonemes and doesn’t seem to use speech with intent to communicate specific meaning but rather as a form of play and emotional expression [the fact that this was my impression on my first visit but not later makes me wonder if she is reluctant to try communicating with strangers… or with people who assume she isn’t very bright]. She likes music and will make repetitive sounds in rhythm to a beat.
Cheerleader, like many typically developing children, chatters virtually nonstop, and requests my constant verbal and visual attention. I find this exhausting, as I dislike attending that constantly, especially in more than one sensory modality at a time. However, I remember from my own childhood the emotional importance of feeling attended to, so I try to balance giving her as much attention as I am capable of while being firm about rules and my need to give equal time to Princess. I almost invariably feel at a loss for appropriate verbal responses to Cheerleader’s chatter, but she seems more or less satisfied with my attempts, inane as they sound to me.
And then I stopped, but I can’t remember now if I ran out of knowing what to say or just the time and energy to get it down. Probably the latter.
And so I’ll break here and continue in a following post.