Monday, September 22, 2008

Two years

I've been thinking a lot lately about one of the things said by the first pediatric neurologist we really trusted to care for Robert.  Our son crashed very suddenly, over a four-day or so period, and we had been through about five months of fruitless testing to find out what was wrong by the time we made it to Dr. Crawford's office at the multi-organizational entity known as Johns Hopkins.  Crawford was the first to articulate anything that actually seemed to match the entire trajectory, took into account Robert's pre-crash normalcy, and seemed to make sense.  In the end, the preliminary diagnosis of atypical ADEM is probably not right, but it was a good start and connected us with some brain treatments that have had broad applications and have, over the long term, been a benefit to Robert.  

First of all, Crawford told us to be careful about developmentalists until we had a much clearer diagnosis or understanding of the physiology that underlay Robert's problems.  At the time, we had medical evidence of any kind that would direct us in any appropriate direction.  I already knew instinctively that working with developmental scientists was the pathway to shutting Robert down altogether.  And it's true--without a diagnosis or physiological evidence, there's no way to interpret findings from a developmental assessment, let alone put together an accurate one.  Letting go of that type of assessment never bothered me, perhaps because I attended lit grad school in the late 80s and early 90s, during the height of the theory craze, and, thus, had no trouble grasping how particular theoretical frames can radically change interpretation and perspective.  I'm still very wary of developmental science because its basic premise is to divide the world of children into normal and not-normal, often on the thinnest of premises, but with the weight of tyrannical authority.

Second, I remember Crawford talking about "truisms" in neurology, one of which was that patients tend to recover from major insults within about two years if they're going to recover at all.  This made sense to me because it seemed as though two years was just about the length of time it would take for the most devoted caregivers to burn out, need to return to a job, or need to refocus their lives for the purposes of, at minimum, emotional survival.  

We've pushed this much longer than two years.  A full ten as a matter of fact.  And as I've returned to a part-time job, gotten an MFA, and relied on caregivers of lesser quality than myself (because I was in need of some emotional reviving), Robert's progress has been more uneven.  Of course, underlying these problems is the progression of a disease manifesting itself at the cellular level first, undetectable by CT or MRI scan.  

I push myself very hard with this, and become frustrated with people who are supposed to be "caregivers" in a broad sense: educators, some therapists, some doctors, and others, who seem to flag at the first sign of trouble.  Or seem to be sitting on the sidelines munching a bag of potato chips, occasionally calling out encouragement, but, in reality, taking bets on when I'm going to give up.  Well, not yet: "who loned it through the streets of Idaho seeking visionary indian angels who were visionary indian angels."


Special Needs Mama said...

I know what you mean, and yet you yourself must make the occasional visit to the sidelines so as to nourish yourself, bags of chips or something stronger. And I honestly don't see you giving up any time soon.

Elizabeth said...

As my little sister likes to say, "I hear you barking, big dog." And I'm barking along with you.