Sunday, July 3, 2011

We Are the Experts on Our Own Kids

That's the truth whether we wish it was so or not.

I was really surprised this week when a referral from our FASD clinician, one of the few professionals we have met who truly "gets" Hope, resulted in an appointment with a really nice doctor who started out (it seemed to me) questioning whether that diagnosis is even right, throwing out some alternate explanations that have already been eliminated as possibilities by other doctors. I wasn't expecting it and when it finally occurred to me to simply say that he respected it and moved on.

I'm conflicted about the fact that I'm conflicted by the encounter. After all, as a historian I essentially do that all the time: play devil's-advocate, prodding the assumptions underlying conclusions, asking, "What if we're wrong about this particular assumption? Can the traditional interpretation stand even if we were wrong about the beliefs that support it?"

Why wouldn't I welcome someone doing that for my daughter? That's what this doctor was doing.

I think the short answer is that we've already spent four years ruling out other diagnoses. I honestly hoped there was some alternate explanation because there is still (unfairly) so much stigma associated with an FASD diagnosis. Now that we've come to accept it, I'm ready to move on.

Does that mean we need to move on from this particular professional? I think not. In the end he agreed that she has either ADD or ADHD (kids often outgrow the "H" and it seems Hope may be) and would benefit from trialing medication. That was my goal for the appointment and it was met. He also had good rapport with Hope which counts for alot.

Sure: I would have welcomed meeting someone who is like-minded with our FASD clinician. But it sounds like we will not need a long-term relationship with this doctor; that the management in the near future will be transferred to our pediatrician. Who because she is also the pediatrician to Dorothy's kids is already used to tiger mamas :).

Speaking of Dorothy, be sure to stop over and read her thoughtful answer, Becoming the Specialist, to my questions about finding the right doctor for a complicated child. She said it very well.

1 comment:

rhemashope said...

i know what you mean. i used to be a little disturbed by the fact that i could go in to my daughter's neuro and tell him everything *i* thought should be done. i expected him to know more than me about her. now i'm sort of comforted by the fact that this dr. respects my knowledge and trusts my instincts.

i hope all goes well with the medication trial!