Monday, May 22, 2017

Altogether lacking replication

Much of the discussion on the CHASA Facebook group (Children's Hemiplegia and Stroke Association; centers around expectations and behavior.  All of the parents want to know what will happen with their children-- will they walk?  pee in the toilet? pass third grade?  fall in love? play an instrument? keep a job?

Hunkering down with grandparents and stuffed animals
as tornado sirens roared
Every time their child does something unusual, they want to know if it is, in fact, unusual, and if it is a result of the brain damage.  And every time someone asks, "Does your hemikid* do X?" a bunch of parents respond, "Hey, wait, my kid also does that.  I thought he was the only one," and after a bunch of similar responses, someone will invariably add, "but my neurotypical child also does X.  I don't think it has anything to do with hemiplegia."  And the thing is, we don't know.

Aster has some unusual behaviors.  Sometimes I look at him and think, "your are one weird little dude" and when a CHASA parent posts a link to a British list of frustrating behaviors of kids with hemiplegia (found through HemiHemp here) I can read through the whole list and nod because my kid is exactly like that.  I can point out that the adult I know with mild cerebral palsy has always had unusual behaviors.  But then she is a PhD biologist and the child of academics-- there was no way she was growing up normal.  And there are my "neurotypical" son, husband, brother, and brother-in-law: "Whoah, there are some weird dudes**"  "Insult to brain" in infancy-- genetics -- environment-- we are never going to tease those potential causal factors apart.

So I guess I have two points.  One is that unusual behaviors, especially regarding impulsivity, moodiness, and challenges with social cues are common in children who have survived strokes.  These behaviors may be caused by, or in addition to, issues they have from physical problems (more pronounced fatigue, spams, pain and lack of sensation, constipation, poor balance, early arthritis and joint issues).  You might not think that a long ago brain injury that only seems to affect movement in one limb would have anything to do with outbursts after dinner-- but if somebody has been working harder just to walk, struggling mightily to keep up because they can't write quickly; holding pee all day because they are embarrassed to ask for help with the snap on their pants; and have an itchy foot from sand that got stuck in the brace; it's not terribly surprising whether or not the brain damage affected executive function.

The second is that we don't need to know causes of behaviors in order to treat each other compassionately.

If all life is an experiment, it is a really poorly designed one with no control and poor replication.

*"Hemikids" was the original name for the organization, and children with hemiplegia are still sometimes referred to as hemikids.  It still makes me giggle because, while I know they are half goat, I do want to know what the other half is.

**Mother and mother-in-law-- your kids and grandkids aren't exactly normal. I, for one, think that is a very good thing.

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