Friday, 24 October 2008 01:52 pm
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deckardcanineI finished the second interview transcription, probably the last for this client. The interview was a little longer, hence the longer completion time. Like the first, it was with a mother who had to deal with a public school system and get speech assistance technology. In this case, the condition was athetoid CP rather than quadriparetal CP, and it was manifested in twin boys who are now in third grade. Geneticists are actually at a loss as to how they could have the exact same disorder-based problems.
The interviewee repeated herself a lot, but it was still interesting to hear about the two boys. Simply being more than one with the condition presented unique challenges. For example, the parents had to find technology that would let the boys communicate more efficiently than their privately invented sign language. Insurance was reluctant to provide power chairs for three-year-olds, but would you opt to push two wheelchairs for your kids when they're too big for strollers?
Also of note was the sheer awfulness of the school's program. It's bad enough that the boys were placed with the mentally retarded for a disorder that doesn't hinder their thinking. They then had to deal with the staff's wrongly skewed view of desired technology, the laziness of certain aides, the abusiveness of a teacher who suspended the speech device as a punishment, and the general attitude toward all the kids. Brings to mind Grey's Law: "Any sufficiently advanced incompetence is indistinguishable from malice." There were some good and effective personnel, to be sure, but easily the best help was found elsewhere.
The most stressful period for the interviewee had a variety of significant problems. One of the twins had practically shut down in response to school abuse. An older brother had developed autism (now reduced, if I understood correctly). And her husband, for the first time, was on the verge of divorcing her. You see, she had always been willing to compromise until it came to speech assistance for her kids, and he didn't like the stubborn side she showed in her uphill battle. Eventually he decided to leave the issue entirely to her, not even wanting to hear about it.
Well, she must be a strong woman. Things are going pretty well for her these days (at least up to the time of the interview). She now takes a community leadership role and strives to help others not have to make the same struggle she did.
The interviewee repeated herself a lot, but it was still interesting to hear about the two boys. Simply being more than one with the condition presented unique challenges. For example, the parents had to find technology that would let the boys communicate more efficiently than their privately invented sign language. Insurance was reluctant to provide power chairs for three-year-olds, but would you opt to push two wheelchairs for your kids when they're too big for strollers?
Also of note was the sheer awfulness of the school's program. It's bad enough that the boys were placed with the mentally retarded for a disorder that doesn't hinder their thinking. They then had to deal with the staff's wrongly skewed view of desired technology, the laziness of certain aides, the abusiveness of a teacher who suspended the speech device as a punishment, and the general attitude toward all the kids. Brings to mind Grey's Law: "Any sufficiently advanced incompetence is indistinguishable from malice." There were some good and effective personnel, to be sure, but easily the best help was found elsewhere.
The most stressful period for the interviewee had a variety of significant problems. One of the twins had practically shut down in response to school abuse. An older brother had developed autism (now reduced, if I understood correctly). And her husband, for the first time, was on the verge of divorcing her. You see, she had always been willing to compromise until it came to speech assistance for her kids, and he didn't like the stubborn side she showed in her uphill battle. Eventually he decided to leave the issue entirely to her, not even wanting to hear about it.
Well, she must be a strong woman. Things are going pretty well for her these days (at least up to the time of the interview). She now takes a community leadership role and strives to help others not have to make the same struggle she did.