Meeting with the early intervention team

Carolyn and I felt a little unmoored after we left HSC. We went from being around doctors and nurses all day to managing Max on our own. Looking back, I see that I always thought about "the NICU team" or "the HSC team". Going from a team sport to an individual event was a little daunting. After meeting with our pediatrician yesterday and the visit by the county early intervention staff today, we're starting to see the new team assemble.

When thinking about where to live, we never considered the county's support services to families of infants with special needs. Arlington seems to have a pretty good program although, unlike similar programs in Maryland or DC, the services aren't guaranteed to be free of charge. There's an interesting research paper here, given that the overwhelming majority of families who need these services don't choose their location based on the price or quality of the services.

The county sent a specialist case manager and an occupational therapist from a third-party service provider. Max put on a major charm offensive for them. The occupation therapist, J., told us that, based on reading Max's chart, she expected a kid with many more problems and a grimmer outlook than Max presents in the flesh. I asked J. what the major pitfalls are for us down the road. Interestingly she skipped right over medical mistakes, infections and so on and identified "parental stress" and "aversion conditioning" as the two biggest threats. The first I can understand. The second is more interesting. Both children and parents can begin to associate feeding, therapy, and any changes to their routine as painful. Children can develop oral aversions as well as aversions to physical exertion more generally. Parents can be overcome with inertia and reluctant to try new things.

J., like lots of other medical professionals we've worked with, focused on lots of positive signs she sees in Max. However, she was also quite blunt and forthright about Max's problems and didn't hide behind jargon to camouflage bad news. In effect, she told us that we've bought a house in the nicest neighborhood in Philadelphia. I've always liked Philadelphia.