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Personal best is not predictive

July 20, 2011

managing expectations in FASD

I’ve had a pile of books on FASD sitting in my living room for months, waiting for me to re-read and review them here. I just haven’t had time to do any of them justice. And so they sit.

One of them keeps coming to the top of the pile: Diane Malbin’s Trying Differently Rather than Harder. At 80 pages, it is not the most comprehensive. And at $19, it is not the least expensive. But it is obviously one of the most practical because I repeatedly reach for it in the midst of parenting a child with FASD.

Malbin knows what she’s talking about. She is a social worker, a parent educator, and the mom of children with FASD.

I was skimming Trying Differently, looking for a specific quote, when I was stopped by a graph that appears on p. 29 in the middle of a section on dysmaturity. “Dysmaturity” is FASD World-speak for the fact that the emotional maturity and excecutive functioning in kids with FASD routinely lag behind their chronological age.  Graphed, dysmaturity looks something like this:

dysmaturity in FASD

Kids with FASD are less mature emotionally (green) than their age (blue)

While over time, children with FASD show growth in their emotional development (and changes in the behaviors linked to it), they lag behind their neuro-typical peers and tend not to catch up. So a six-year-old may still act like a two-year-old, or a 21-year-old like a 13-year-old.

Malbin got my attention with the graph I have modeled below, contrasting “actual performance” –the jagged black line  –with expectations.

dysmaturity plus performance

actual performance (black) is highly variable

While parenting neuro-typical kids might lead us to expect delayed, but gradual maturation, there is very little “slow and steady” about kids with FASD. No prenatally exposed child comes with a personalized graph indicating  his future potential. (Parents have a hard time knowing what to aim for.) Nor does the child come with a road map showing the route by which, eventually, he will attain the level of maturity he is destined to attain.

So when we glimpse bright flashes of promising behavior that exceed our expectations (highlighted in yellow on the graph), we are prone to think either:

  • our prenatally exposed child must not have FASD because kids who have it are said not to be able to behave so well, OR
  • that we can hold our child with FASD to higher expectations because she just ‘proved’ she can do it.

At the other extreme, when our child with FASD falls short of our already lowered expectations, it is easy to despair, imagining this pit is the “real thing” –the horror stories we have heard about living with FASD –from which our family will never emerge.

As Malbin writes, “Having ‘on’ days and ‘off’ days, or inconsistent performance, is also common with people with FASD. Every once in a while, or in some way, they meet or exceed our level of expectation. This provides random reinforcement for adults, which is the most powerful kind of reinforcement. It reinforces our belief that,  ‘He can do it if only he tries harder. He’s just not applying himself. With enough pressure he’ll do well all the time.’ Unfortunately the child is trying just as hard on an ‘on’ day as on an ‘off’ day.” (p. 29, italics mine)

Peaks and valleys in behavior are normal in FASD.  They are to be expected. They are not predictive of potential. They just are.

We cannot manage the brain damage caused by prenatal alcohol exposure. But we can manage our expectations. That’s one of the secrets to staying sane.

Edited to add: be sure to read r.r.’s comment below. It is spot-on as an application of Malbin’s concept to real life with FASD.

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3 Comments leave one →
  1. July 21, 2011 7:00 pm

    The graph also makes me wonder about all the various treatments that are being promoted. When one treatment works so well for one kid but not for another, you always wonder if maybe it’s because of differences in brain chemistry, trauma history, etc. But this graph suggests that sometimes there may be no causation whatsoever–every treatment must catch at least some kids while they’re on the uptick, know what I mean? And to the parent whose kid finally seems to be improving after a long period of stagnation (or even decline), it probably seems like they’ve finally found the breakthrough that will help kids like theirs.

  2. July 21, 2011 7:55 pm

    r.r. Actually, that implication had not occurred to me. But it is insightful. For example, we’re having a week where I’m ready throw in the towel on a new med. But reading your comment reminded me that while I feel like we’re on a downward jag, we’ve been in an encouraging upswing for a while so this could be the FASD-inevitable correction. Or the behaviors could be something completely unrelated like the crazy dewpoints we’ve had during soccer camp. While if we were having a great week I might feel inclined to praise the new med. Thanks for that perspective!

  3. July 29, 2011 11:56 pm

    This is the most amazing chart ever and fully describes what happens here 🙂 Thanks for this post!

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