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We went to the neuropsychologist!
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<blockquote data-quote="Marguerite" data-source="post: 335642" data-attributes="member: 1991"><p>surprise, surprise... [tongue firmly in cheek]</p><p></p><p>It may not have been a formal neuropsychologist test, but they did a lot of the right things. I'm guessing they saw enough to give you the diagnosis. I would ask if there is going to be more detailed testing further down the track.</p><p></p><p>What you asked for - you say you asked for a neuropsychologist assessment, but did you also say, "I want to know what is wrong with my son."? Because that is what they have given you.</p><p></p><p>How much did they charge? How long were you there? How long was the computer-based test that he did? There may have been more in that, than you realise.</p><p></p><p>Plus you are going back in a week to discuss it. I would ask then, for a breakdown on exactly what it was they did to assess him (they are probably going to tell you this anyway) and also where you go form here, in determining his strengths and weaknesses. Ask to see a copy of the psychometric testing that he did, especially looking at the sub-scores, so you can get an idea of his strengths and weaknesses; where he is gifted and where he needs remedial help.</p><p></p><p>Psychometric testing (formerly known as IQ testing) can give a lot of useful detail. But the testing can be at various depths. If you think of a swimming pool (or maybe a community swimming pool centre) you have multiple levels depending on a person's age and swimming ability. And how long they have to spend training.</p><p>First you have the baby pool, little more than an ankle-deep (at most knee-deep) wading pool. </p><p>Then you have the next pool where it might come up to your waist, but it still a good place for younger kids to actually try swimming a few strokes.</p><p>Next you have the olympic-sized pool with lap lanes. Experienced swimmers dive off the deep end to practice for their races.</p><p>Finally you have the really specialised diving pool, with the high diving boards at one end.</p><p></p><p>It sounds to me like you have been in the wading pool here. </p><p>Now, it is a start. Whatever testing was done, can be added to. It could be tat the testing that was done, was similar to the level that a lot of schools can/will do.</p><p></p><p>We went down this road also. The school did some fairly basic testing, but it was still enough to back up the diagnosis.</p><p>We then took the school's results to someone else, who looked at it, knew what not to bother about with further testing, and who then focussed on specific areas of interest, in further testing. This saved us a fair bit of money as well as a lot of time and effort.</p><p></p><p>Sometimes good neuropsychologist testing can take place over multiple practitioners and stretches of time. I think it is preferable to do it all in the same place with the same people, in dedicated longer sessions. Some kids need it broken up; some need it all done together. The younger the kid, the more they may need to break it up, to avoid the kid refusing. </p><p>difficult child 1 did that - while being tested (about age 7), he simply said, "I don't want to answer any more questions. I want to talk about birds instead."</p><p>[and that bloke didn't see Asperger's screaming at him? I still marvel at that]</p><p></p><p>Give these people a bit more rope. They've given you something to go on with. As long as they didn't charge the same amount that people pay for all-day sessions of intensive testing, then you have (so far) gotten what you paid for. And they may be continuing the process.</p><p></p><p>But once they can see enough to say, "Well so far we have seen enough to tell you, your child clearly fits into this category. So we can stop looking in other areas, this is clear-cut," then they are trying to give you some useful answers.</p><p></p><p>Now, they said he definitely has Pervasive Developmental Disorder (PDD). But it needs to be more defined tan this. It does sound to me like the process with them is not complete. This may simply be how they work - progress reports as and when things become obvious to them, but they still keep working on things until they can be more specific.</p><p></p><p>As for what you do from here - we went through a lot of early diagnostics with the diagnosticians saying to us, "Now you know what it is, there will be elp available. Go to this doctor, that organisaiton, and tey will look after you from here."</p><p></p><p>The reality is - it doesn't work like tat. The doctors and organisations we were referred to, were overloaded and at best could only be of peripheral use. We had to find out own way. Yes, it opened doors to help at school. But we had to find out own way to other out of school groups. I actually had to start up a couple of things myself - you CAN do this, you know. At a social skills class for autistic teens organised through a charity, us parents were sitting drinking coffee waiting for our kids, when we decided to start a social group, all going out together as families, taking our kids to various places. We went on picnics and bowling. It was wonderful to see the friendships developing, but it also helped the parents. And we did this ourselves.</p><p></p><p>Much of what we have done for difficult child 3, we have done ourselves from home. We developed our own therapies. We found our own therapists then adapted what they were doing into our everyday life.</p><p></p><p>Through our social skills group we developed other networks and made more contacts. We shared information on what worked and what didn't. Some kids had money thrown at them and went to expensive private tutors. Some had poor parents and have had to make things work within the public system. Seeing the various outcomes of these kids tells us a lot about what is worth the money and what is not.</p><p></p><p>I hope this helps. Give this mob a bit more time to give you what you asked for. I don't think they're done yet.</p><p></p><p>We did go through similar things ourselves - I rang around Sydney trying to find people who could help. One doctor in particular told me he could help us get a diagnosis as well as some ongoing therapy. He had an opening that afternoon so I drove across the city (two hours' drive) almost in tears of relief. He ushered us all in (me and four kids), listened to the story (which I had also told him over the phone) and I waited to hear his words of wisdom. He got up, walked round the desk, opened the door to let us out and said, "You do have some concerns here. I hope you find what you need. Do let us know how you get on."</p><p></p><p>We hit about half a dozen of these situations before we finally found the answers. But in a way, they were all stepping stones. And in the end - once we knew, we got on with doing it ourselves. And the kids are doing great! You could spend a lot of money and not do any better.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 335642, member: 1991"] surprise, surprise... [tongue firmly in cheek] It may not have been a formal neuropsychologist test, but they did a lot of the right things. I'm guessing they saw enough to give you the diagnosis. I would ask if there is going to be more detailed testing further down the track. What you asked for - you say you asked for a neuropsychologist assessment, but did you also say, "I want to know what is wrong with my son."? Because that is what they have given you. How much did they charge? How long were you there? How long was the computer-based test that he did? There may have been more in that, than you realise. Plus you are going back in a week to discuss it. I would ask then, for a breakdown on exactly what it was they did to assess him (they are probably going to tell you this anyway) and also where you go form here, in determining his strengths and weaknesses. Ask to see a copy of the psychometric testing that he did, especially looking at the sub-scores, so you can get an idea of his strengths and weaknesses; where he is gifted and where he needs remedial help. Psychometric testing (formerly known as IQ testing) can give a lot of useful detail. But the testing can be at various depths. If you think of a swimming pool (or maybe a community swimming pool centre) you have multiple levels depending on a person's age and swimming ability. And how long they have to spend training. First you have the baby pool, little more than an ankle-deep (at most knee-deep) wading pool. Then you have the next pool where it might come up to your waist, but it still a good place for younger kids to actually try swimming a few strokes. Next you have the olympic-sized pool with lap lanes. Experienced swimmers dive off the deep end to practice for their races. Finally you have the really specialised diving pool, with the high diving boards at one end. It sounds to me like you have been in the wading pool here. Now, it is a start. Whatever testing was done, can be added to. It could be tat the testing that was done, was similar to the level that a lot of schools can/will do. We went down this road also. The school did some fairly basic testing, but it was still enough to back up the diagnosis. We then took the school's results to someone else, who looked at it, knew what not to bother about with further testing, and who then focussed on specific areas of interest, in further testing. This saved us a fair bit of money as well as a lot of time and effort. Sometimes good neuropsychologist testing can take place over multiple practitioners and stretches of time. I think it is preferable to do it all in the same place with the same people, in dedicated longer sessions. Some kids need it broken up; some need it all done together. The younger the kid, the more they may need to break it up, to avoid the kid refusing. difficult child 1 did that - while being tested (about age 7), he simply said, "I don't want to answer any more questions. I want to talk about birds instead." [and that bloke didn't see Asperger's screaming at him? I still marvel at that] Give these people a bit more rope. They've given you something to go on with. As long as they didn't charge the same amount that people pay for all-day sessions of intensive testing, then you have (so far) gotten what you paid for. And they may be continuing the process. But once they can see enough to say, "Well so far we have seen enough to tell you, your child clearly fits into this category. So we can stop looking in other areas, this is clear-cut," then they are trying to give you some useful answers. Now, they said he definitely has Pervasive Developmental Disorder (PDD). But it needs to be more defined tan this. It does sound to me like the process with them is not complete. This may simply be how they work - progress reports as and when things become obvious to them, but they still keep working on things until they can be more specific. As for what you do from here - we went through a lot of early diagnostics with the diagnosticians saying to us, "Now you know what it is, there will be elp available. Go to this doctor, that organisaiton, and tey will look after you from here." The reality is - it doesn't work like tat. The doctors and organisations we were referred to, were overloaded and at best could only be of peripheral use. We had to find out own way. Yes, it opened doors to help at school. But we had to find out own way to other out of school groups. I actually had to start up a couple of things myself - you CAN do this, you know. At a social skills class for autistic teens organised through a charity, us parents were sitting drinking coffee waiting for our kids, when we decided to start a social group, all going out together as families, taking our kids to various places. We went on picnics and bowling. It was wonderful to see the friendships developing, but it also helped the parents. And we did this ourselves. Much of what we have done for difficult child 3, we have done ourselves from home. We developed our own therapies. We found our own therapists then adapted what they were doing into our everyday life. Through our social skills group we developed other networks and made more contacts. We shared information on what worked and what didn't. Some kids had money thrown at them and went to expensive private tutors. Some had poor parents and have had to make things work within the public system. Seeing the various outcomes of these kids tells us a lot about what is worth the money and what is not. I hope this helps. Give this mob a bit more time to give you what you asked for. I don't think they're done yet. We did go through similar things ourselves - I rang around Sydney trying to find people who could help. One doctor in particular told me he could help us get a diagnosis as well as some ongoing therapy. He had an opening that afternoon so I drove across the city (two hours' drive) almost in tears of relief. He ushered us all in (me and four kids), listened to the story (which I had also told him over the phone) and I waited to hear his words of wisdom. He got up, walked round the desk, opened the door to let us out and said, "You do have some concerns here. I hope you find what you need. Do let us know how you get on." We hit about half a dozen of these situations before we finally found the answers. But in a way, they were all stepping stones. And in the end - once we knew, we got on with doing it ourselves. And the kids are doing great! You could spend a lot of money and not do any better. Marg [/QUOTE]
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