Planet Autism is an old article (Scot Sea, Salon, 2003; registration or free daypass required), but it is an incredibly intense, realistic and moving account of living with a disabled child. Even though much of the article describes the author’s specific trials of dealing with autism, many of the observations (spinning through the medical system’s endless circles, reduced finances due to not being able to work full-time, clueless friends/neighbours) ring frighteningly true for any parents of severely developmentally disabled children; I find the the fear expressed in the last four paragraphs is chillingly recognizable. Emily Perl Kingsley’s “Welcome to Holland” is the G-rated, Hallmark version (though moving in its own way); “Planet Autism” is the real thing.
Jun
10
No comment yet
Laura says:
June 10, 2004 at 3:25 pm (UTC 0)
To demonstrate an example of “clueless neighbour” above: Soon after Jon was diagnosed with infantile spasms at 6 months, (with the family virtually living at the hospital shuttling between all of his medical appointments), Peter was talking to a bunch of neighbours. One was kvetching about the plantar wart her kid had, and how it was such a pain to have to go to the doctor weekly! Another neighbour, in unfeigned commiseration, sighed “how do you DO it?!” Peter reported afterward that he had to hold himself back from committing a multiple murder right then and there.
Peter Cook says:
June 12, 2004 at 7:19 pm (UTC 0)
Yeah, for me the metaphor of “Welcome to Holland” is not necessarily accurate–some days I’d venture that it may not be a first world country we landed in.
Reid says:
June 17, 2004 at 11:55 am (UTC 0)
Yes, we often lose our sense of perspective. I often think that perspective is scaled to our immediate experiences.