Re: sense and sensibilities

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Posted by Dave on June 12, 201 at 17:02:39:

In Reply to: sense and sensibilities posted by herb schreier on June 12, 201 at 14:11:05:

First off there is no reason to apologize. I recognize your dedication and i think of what i know of researchers on this topic you bring up some of the most compelling questions in regards to NLD.

I realize you are a champion on the topic. I think for me it is just a chance to express my concerns as a parent to a professional. I can complain to a professional and they actually know what i’m talking about.

Let me explain although i’m sure you understand. I saw Byron Rourke and Sue Thompson speak about 2years ago. I was fairly knew to NLD but knew enough. I was sick to my stomach afterwards. How could they depict such a negative life for our kids. Offering very little hope and the hope they offered was not comforting.

I walked in there thinking they are going to offer so many helpful strategies and i’m going to go home with all this great help. Instead i walked out dejected and depressed.

Then i thought about the poor couple who i met that had a newly diagnosed daughter and knew very little. I couldn’t imagine their thoughts. That saddened me more than my own emotions because i wasn’t going to let anyone dictate or predict my daughters outcome.

My daughter has changed my life forever in a positive way. Although it has been a difficult road heart wrenching and i probably carry as much anxiety as she does. It has helped me view and think about people in a way i never imagined.

I agree with the researchers and therapist and neuropsychs with the importance of their work. I am a little cautious only because just being a regular person and recognizing flaws in research is scary to me.

My problem is i want to know everything. I just don’t want results i want details of the studies. How they were performed and what controls were applied and so on and so forth.

I wonder where research will take us when we have a larger norm. Think about it we had a get together in NYC we could only come up with 6 people.

Are recommendations going to based on limited groups perhaps only the most severe because we just don’t have a large enough group to work with.

I need comfort from the professionals to say i’ve got this in control. I know what i’m doing and we are going to help. All the research in the world that identifies all the things that have gone wrong will not help if we don’t know what will help.

I liken it to things like the Feingold Diet. Sure initially it showed wonderful interesting results. As the group of Feingold Dieters has increased and the studies come in it has shown to be more anecdotal at best.

I’ll get off my soapbox. More than anything i wanted to thank you for coming on the line and giving me the opportunity to express myself. I truly appreciate and respect you and anything i say is not meant to be a reflection of how i feel about you. Just a little dig to make sure you’ve got your eye on those less sensitive researchers.

Perhaps you could write the first positive NLD book. (i mean that too)

I hope you read this

NLD Watchdog
Dave

: Well first of all to apologize….my message was not meant in anyway to offend or to imply that there are only negatives to be found in NLD kids….In fact some of the most winning kids in the clinic are kids who struggle with one or another part of this problem. One regularly brings me original work that totally surprises and pleases me.
: The point of my research is to try and define the specific cognitive areas as specifically as possible for the kids we see and not pidgeon-hole them in a category. This hopefully will lead to suggestions of approaches about how to help them. Theory of the mind…is a developmental task and a specific one with different age norms. It is far from perfect and yes you can have empathy even strugling with theory of the mind tasks. Two little girls come to mind who have difficulty discarding even collected stones lest they be lonely. From my point of view this is something that deserves attention.
: I would like to add, that one of the reasons that i am so intersted in these kids is that they teach us just how many things….assuming we are any better at them that we take for granted.
: and probably do not appreciate.
: In my last talk I mentioned a piece by Baron-Cohen in which he talks about folk-psychologists or anthropologists….most people…that is we appear to learn out culture just by living in it. Then there are folk physicists….most of us are not that….He says we do not define this as a deficit…and so we shouldn’t define people who are not good folk psychologists as disordered. Well I agree….but in order to help these kids…we have learned a lot over the years by our various neuro cognitive tests and trying out recommendations. Pragmatic language is one of those findings. It is not a fun term either…Pragmatic Language Inabilities…but we need some short-hand to describe these processes.
: We who are fortunate enough to work in the field ….owe a lot to learning from both the kids and the parent’s and teachers of the kids….. and I for one am thankful for the opportunity.
: H.S.

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: Hi: First off there is no reason to apologize. I recognize your dedication and i think of what i know of researchers on this topic you bring up some of the most compelling questions in regards to NLD.: I realize you are a champion on the topic. I think for me it is just a chance to express my concerns as a parent to a professional. I can complain to a professional and they actually know what i’m talking about. : Let me explain although i’m sure you understand. I saw Byron Rourke and Sue Thompson speak about 2years ago. I was fairly knew to NLD but knew enough. I was sick to my stomach afterwards. How could they depict such a negative life for our kids. Offering very little hope and the hope they offered was not comforting. : I walked in there thinking they are going to offer so many helpful strategies and i’m going to go home with all this great help. Instead i walked out dejected and depressed.: Then i thought about the poor couple who i met that had a newly diagnosed daughter and knew very little. I couldn’t imagine their thoughts. That saddened me more than my own emotions because i wasn’t going to let anyone dictate or predict my daughters outcome.: My daughter has changed my life forever in a positive way. Although it has been a difficult road heart wrenching and i probably carry as much anxiety as she does. It has helped me view and think about people in a way i never imagined. : I agree with the researchers and therapist and neuropsychs with the importance of their work. I am a little cautious only because just being a regular person and recognizing flaws in research is scary to me.: My problem is i want to know everything. I just don’t want results i want details of the studies. How they were performed and what controls were applied and so on and so forth.: I wonder where research will take us when we have a larger norm. Think about it we had a get together in NYC we could only come up with 6 people.: Are recommendations going to based on limited groups perhaps only the most severe because we just don’t have a large enough group to work with.: I need comfort from the professionals to say i’ve got this in control. I know what i’m doing and we are going to help. All the research in the world that identifies all the things that have gone wrong will not help if we don’t know what will help.: I liken it to things like the Feingold Diet. Sure initially it showed wonderful interesting results. As the group of Feingold Dieters has increased and the studies come in it has shown to be more anecdotal at best.: I’ll get off my soapbox. More than anything i wanted to thank you for coming on the line and giving me the opportunity to express myself. I truly appreciate and respect you and anything i say is not meant to be a reflection of how i feel about you. Just a little dig to make sure you’ve got your eye on those less sensitive researchers.: Perhaps you could write the first positive NLD book. (i mean that too): I hope you read this: NLD Watchdog: Dave: : : Well first of all to apologize….my message was not meant in anyway to offend or to imply that there are only negatives to be found in NLD kids….In fact some of the most winning kids in the clinic are kids who struggle with one or another part of this problem. One regularly brings me original work that totally surprises and pleases me. : : The point of my research is to try and define the specific cognitive areas as specifically as possible for the kids we see and not pidgeon-hole them in a category. This hopefully will lead to suggestions of approaches about how to help them. Theory of the mind…is a developmental task and a specific one with different age norms. It is far from perfect and yes you can have empathy even strugling with theory of the mind tasks. Two little girls come to mind who have difficulty discarding even collected stones lest they be lonely. From my point of view this is something that deserves attention. : : I would like to add, that one of the reasons that i am so intersted in these kids is that they teach us just how many things….assuming we are any better at them that we take for granted.: : and probably do not appreciate.: : In my last talk I mentioned a piece by Baron-Cohen in which he talks about folk-psychologists or anthropologists….most people…that is we appear to learn out culture just by living in it. Then there are folk physicists….most of us are not that….He says we do not define this as a deficit…and so we shouldn’t define people who are not good folk psychologists as disordered. Well I agree….but in order to help these kids…we have learned a lot over the years by our various neuro cognitive tests and trying out recommendations. Pragmatic language is one of those findings. It is not a fun term either…Pragmatic Language Inabilities…but we need some short-hand to describe these processes.: : We who are fortunate enough to work in the field ….owe a lot to learning from both the kids and the parent’s and teachers of the kids….. and I for one am thankful for the opportunity.: : H.S.

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