6 ms·

> "You know cognitively, he's functioning at the bottom 1 percent of children his age," [our neuropsychologist] said. [...] "That means 99 percent of children a

> "You know cognitively, he's functioning at the bottom 1 percent of children his age," [our neuropsychologist] said. [...] "That means 99 percent of children are doing better than he is." [...] He waited, seemingly perplexed. "Having seen what I saw, and of course you have to be with your son all the time -- I have to ask you, how do you have the patience?" I'm confused, can anyone offer any insight as to how a neuropsychologist would be genuinely surprised by this case? I would have expected that a rather large percentage of a general neuropsychologist's (or at least one that specializes in children) patients would be people who "function at the bottom 1 percent".

pyoung 14y ago
That line also struck me as odd. My immediate hunch is that she took some liberties with the quote, as I doubt a medical professional would ask a question like that.
vacri 14y ago
I had major problems with that story as well - I used to work as a medical tech in neurology, and half our patient load were kids. Either the story is made up, she's misreading sympathetic commiseration for astonishment, or the neuropsych is massively inexperienced. Although the bulk of kids I saw were not like that, cases like the one in the article are not rare. One kid I saw had a left hand that was like leather because biting it calmed him down. Academically interesting, but not astonishing, and certainly not something you should be eroding the parents' confidence about. The only kid I saw that was truly unsettling was one whose throat didn't work properly and constantly sounded like he was drowning in saliva. He literally could die at any time, and his mother said that you just have to get used to the sound. The thing is, most parents with severely mentally impaired children deal with it. They kind of have to, because the choices are largely limited to "deal with it" or "let your life fall apart". Occasionally we'd get parents who would morosely define their lives around their child's problems (or even worse, munchausen-by-proxy, but that was really rare for us to see), but for the most parents it was a sense of 'life marches on'. I think the article gives a great sense of that, but the reactions of the neuropsych really disturbed me.
- dsatrg 14y ago
  I get the impression that section was very much from the authors view. Whilst I know nothing of bringing up a child with such a condition I do know other close to me that have had to care for someone full time. And to be frank most of the time they would have looked "astonished" by such a question but take the opportunity to discus the matter, see what can be done to help the situation (in case close to me, such a conversation lead to them having a outside help every once in while so the carer could have a break).
deleted 14y ago
[deleted]
idaniboy 14y ago
It's not an uncommon strategy for clinicians to use questions like that to get parents or patients, who are dealing with an inordinate amount of stress, to let down their defenses with the intention of directing them to self-assess their resolve. The author may be able to take care of her child now, but how about when he's 18 years old, when his outbursts may start to hurt others. There are some families who are capable of overcoming the challenges of raising a developmentally disabled child to adulthood (such as this family) and there are some who can't. I've had patients break down and cry when asked pointedly challenging questions like this, however ultimately, this can be a helpful process for the parties involved when applied correctly. I suspect that the author and others here have missed the true, veiled purpose behind the question, however that does not detract from the overall aims of her article or the clinician. In the end, the clinician's prodding has led to a led to a deeper raison d'être for both the author and the reader.
tobtoh 14y ago
What's so surprising about a comment like that? It seems like a way to build some rapport with the parents - a recognition that they have a hard job - a harder job than other parents with handicapped kids. And how the parents respond to a question like that would be illustrative to the doctor as to what sort of support the kid is receiving or can expect in the future. I had a friend at uni who really struggled financially through no fault of her own (parents where farmers going through a drought, she had a serious illness, her sibling was mentally handicapped) and when she went to see the financial counsellor at uni, she asked him "So, what's my situation like?' and he replied 'Well it's pretty bad ... to be honest, your situation is the worst I've ever seen!" She actually laughed when she relayed the story to me. She said it was a bit of blow to have confirmation that her situation was so bad, but it was also an immense relief to know that she didn't have to feel guilty about struggling. Her situation was bad - but she was still coping. That gave her a big boost of confidence that she could one day escape her troubles (and she has). In the same way, I read the comment from the neuropsychologist in the same way, an attempt to build some rapport with the parents.
- FaceKicker 14y ago
  Assuming the article is completely accurate, the doctor's phrasing and mannerisms (e.g., shaking his head, emphasizing not only that the child is in the bottom 1% but that 99% are better than him, "seemingly perplexed"), don't seem consistent with your explanation. His comments and tone don't strike me at all as being encouraging or reassuring, he just sounds completely dumbfounded by the parents' situation, almost as if he pities them for having such awful lives.
  - ebiester 14y ago
    Alternatively, an intended sympathetic comment is reinterpreted as exactly this in the parent's mind. Sometimes what we mean is not what is conveyed.
  - jasonlotito 14y ago
    I didn't read it that way at all, either. It was sympathy and amazement. Shacking his head in astonishment, and perplexed at how they can handle what they must. Maybe it's because I've been on the other side, seeing that shaking head and being asked that question, but it doesn't at all come across anything less than support and encouragement.
adrianwaj 14y ago
I'm sure the kid isn't like that by accident. I don't believe the medical community is doing a good enough job when such children are becoming increasingly common. Hence my answer to that neuropsychologist would be something along the lines of "well, how do you have the complacency?"
- Roboprog 14y ago
  Well, it's possible the autism increase is merely due to more frequent diagnosis, but I dunno... (it's possible, sadly, that these kids maybe used to be infant mortalities back in the day - but it's also possible that pesticides, vaccines, lead paint, etc are simply poisonous to a small percent of the population as well)
  - roguecoder 14y ago
    Rising age of fathers explains much of the increase in autism rates attributed by discredited science to vaccines: http://archpsyc.jamanetwork.com/article.aspx?articleid=668208 http://archpsyc.jamanetwork.com/article.aspx?articleid=66820... Coincidentally, hormonal birth control came about about the same time as the MMR vaccine, raising the average age of parenthood.
    - adrianwaj 14y ago
      "discredited science to vaccines" well that depends who and what doctors you ask. Heard of Andrew Wakefield? Secondly, what is affecting fathers so badly that the older they get, the more damaged their offspring could become? Whatever's affecting fathers could be affecting children too. http://www.haaretz.com/news/national/researchers-warn-of-rapid-decline-in-quality-of-israeli-sperm-1.449661 http://www.haaretz.com/news/national/researchers-warn-of-rap... Researchers warn of rapid decline in quality of Israeli sperm http://www.haaretz.com/print-edition/news/study-quality-of-israeli-sperm-down-40-in-past-decade-1.275772 http://www.haaretz.com/print-edition/news/study-quality-of-i... Cause of decline unknown, but may be linked to children and pregnant women's exposure to local contaminants. -- This isn't just about age. (and I suspect it has very little to do with it)
roel_v 14y ago
I think this point was not well explained, and what she meant was that the doctor was perplexed not by the kid being 1st percentile but at the calm that the parents kept, their seeming acceptance of the situation. Which is also what is implied by the rest of the story.

pyoung 14y ago

That line also struck me as odd. My immediate hunch is that she took some liberties with the quote, as I doubt a medical professional would ask a question like that.

vacri 14y ago

I had major problems with that story as well - I used to work as a medical tech in neurology, and half our patient load were kids. Either the story is made up, she's misreading sympathetic commiseration for astonishment, or the neuropsych is massively inexperienced. Although the bulk of kids I saw were not like that, cases like the one in the article are not rare. One kid I saw had a left hand that was like leather because biting it calmed him down. Academically interesting, but not astonishing, and certainly not something you should be eroding the parents' confidence about. The only kid I saw that was truly unsettling was one whose throat didn't work properly and constantly sounded like he was drowning in saliva. He literally could die at any time, and his mother said that you just have to get used to the sound. The thing is, most parents with severely mentally impaired children deal with it. They kind of have to, because the choices are largely limited to "deal with it" or "let your life fall apart". Occasionally we'd get parents who would morosely define their lives around their child's problems (or even worse, munchausen-by-proxy, but that was really rare for us to see), but for the most parents it was a sense of 'life marches on'. I think the article gives a great sense of that, but the reactions of the neuropsych really disturbed me.

dsatrg 14y ago
I get the impression that section was very much from the authors view. Whilst I know nothing of bringing up a child with such a condition I do know other close to me that have had to care for someone full time. And to be frank most of the time they would have looked "astonished" by such a question but take the opportunity to discus the matter, see what can be done to help the situation (in case close to me, such a conversation lead to them having a outside help every once in while so the carer could have a break).

deleted 14y ago

[deleted]

idaniboy 14y ago

It's not an uncommon strategy for clinicians to use questions like that to get parents or patients, who are dealing with an inordinate amount of stress, to let down their defenses with the intention of directing them to self-assess their resolve. The author may be able to take care of her child now, but how about when he's 18 years old, when his outbursts may start to hurt others. There are some families who are capable of overcoming the challenges of raising a developmentally disabled child to adulthood (such as this family) and there are some who can't. I've had patients break down and cry when asked pointedly challenging questions like this, however ultimately, this can be a helpful process for the parties involved when applied correctly. I suspect that the author and others here have missed the true, veiled purpose behind the question, however that does not detract from the overall aims of her article or the clinician. In the end, the clinician's prodding has led to a led to a deeper raison d'être for both the author and the reader.

tobtoh 14y ago

What's so surprising about a comment like that? It seems like a way to build some rapport with the parents - a recognition that they have a hard job - a harder job than other parents with handicapped kids. And how the parents respond to a question like that would be illustrative to the doctor as to what sort of support the kid is receiving or can expect in the future. I had a friend at uni who really struggled financially through no fault of her own (parents where farmers going through a drought, she had a serious illness, her sibling was mentally handicapped) and when she went to see the financial counsellor at uni, she asked him "So, what's my situation like?' and he replied 'Well it's pretty bad ... to be honest, your situation is the worst I've ever seen!" She actually laughed when she relayed the story to me. She said it was a bit of blow to have confirmation that her situation was so bad, but it was also an immense relief to know that she didn't have to feel guilty about struggling. Her situation was bad - but she was still coping. That gave her a big boost of confidence that she could one day escape her troubles (and she has). In the same way, I read the comment from the neuropsychologist in the same way, an attempt to build some rapport with the parents.

FaceKicker 14y ago
Assuming the article is completely accurate, the doctor's phrasing and mannerisms (e.g., shaking his head, emphasizing not only that the child is in the bottom 1% but that 99% are better than him, "seemingly perplexed"), don't seem consistent with your explanation. His comments and tone don't strike me at all as being encouraging or reassuring, he just sounds completely dumbfounded by the parents' situation, almost as if he pities them for having such awful lives.
- ebiester 14y ago
  Alternatively, an intended sympathetic comment is reinterpreted as exactly this in the parent's mind. Sometimes what we mean is not what is conveyed.
- jasonlotito 14y ago
  I didn't read it that way at all, either. It was sympathy and amazement. Shacking his head in astonishment, and perplexed at how they can handle what they must. Maybe it's because I've been on the other side, seeing that shaking head and being asked that question, but it doesn't at all come across anything less than support and encouragement.

adrianwaj 14y ago

I'm sure the kid isn't like that by accident. I don't believe the medical community is doing a good enough job when such children are becoming increasingly common. Hence my answer to that neuropsychologist would be something along the lines of "well, how do you have the complacency?"

Roboprog 14y ago
Well, it's possible the autism increase is merely due to more frequent diagnosis, but I dunno... (it's possible, sadly, that these kids maybe used to be infant mortalities back in the day - but it's also possible that pesticides, vaccines, lead paint, etc are simply poisonous to a small percent of the population as well)
- roguecoder 14y ago
  Rising age of fathers explains much of the increase in autism rates attributed by discredited science to vaccines: http://archpsyc.jamanetwork.com/article.aspx?articleid=668208 http://archpsyc.jamanetwork.com/article.aspx?articleid=66820... Coincidentally, hormonal birth control came about about the same time as the MMR vaccine, raising the average age of parenthood.
  - adrianwaj 14y ago
    "discredited science to vaccines" well that depends who and what doctors you ask. Heard of Andrew Wakefield? Secondly, what is affecting fathers so badly that the older they get, the more damaged their offspring could become? Whatever's affecting fathers could be affecting children too. http://www.haaretz.com/news/national/researchers-warn-of-rapid-decline-in-quality-of-israeli-sperm-1.449661 http://www.haaretz.com/news/national/researchers-warn-of-rap... Researchers warn of rapid decline in quality of Israeli sperm http://www.haaretz.com/print-edition/news/study-quality-of-israeli-sperm-down-40-in-past-decade-1.275772 http://www.haaretz.com/print-edition/news/study-quality-of-i... Cause of decline unknown, but may be linked to children and pregnant women's exposure to local contaminants. -- This isn't just about age. (and I suspect it has very little to do with it)

roel_v 14y ago

I think this point was not well explained, and what she meant was that the doctor was perplexed not by the kid being 1st percentile but at the calm that the parents kept, their seeming acceptance of the situation. Which is also what is implied by the rest of the story.