Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 But someone will have to make a comparison with others in order to set spending priorities. Parents cannot compare their child with others. You can see the danger (which already happens to some extent) that articulate, well-off parents will dominate the system (or try to) to the detriment of inarticulate, poor parents with more needy children. I can see why professionals don't trust parental views, annoying though it is. Sally Zoe wrote: > > But surely an assessment of their needs gives a better indication of > what they need? > > Why does how 'severe' they are matter if an assessment of their > needs tells you what they need? They both might need similar levels > of support in some areas and different levels in another or one > child might need more support than the other......why do we have to > look at 'severity' as determined by a diagnosis if we can look at > the level of need that they have? > > " How are we to get to the needs without any difference in the dx " - > by looking at their levels of functioning in different areas and > asking their parents for their views on the child's difficulties and > needs. > > Zoe > > > > > > But it gives some indication, if I were to have both my boys > autism with no > > hint at severity then they would get even worse provision than > they do now. > > There also has to be a start point, something parents can use, how > is saying > > autism more useful in providing than saying severe, moderate or > high > > functioning. > > How are we to get to the needs without any difference in the dx? > > I'm just not seeing how 2 children with opposite ends of severity > and > > therefore functioning can be classed as the same, how will that > bring better > > provision? I actually think it can only bring less to all. > > Vicky > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.175 / Virus Database: 270.8.4/1751 - Release Date: 27/10/2008 22:44 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Can't disagree with any of that, Zoe. I just feel sorry for my friend who is still battling against people saying there is nothing wrong with her child at all! I think lots of us went through that prior to diagnosis, people saying things to us like 'my child didn't talk either ' and 'my child did (... whatever behaviour it is you're worried about) too' so I am grateful for the recognition of the needs and that's all a label of autism is anyway in mainstream because the mainstream view is that we don't understand what autism is or what causes it. The problem is people's interpretation of the label but, as most medics appear to be misinterpreting it, then I take your point. Sara Zoe wrote: > > The problem there is that chicken pox or a broken leg can be relied > upon to be fairly similar in each child and to result in a similar > level of need for treatment/support. > > Autism is so different for different children and their families - > and that is why I think we should be looking at need instead of > label. > > If you look at label, then the professionals make judgements about > what that label means and what the needs are WITHOUT (not shouting, > just emphasising - I wish there was an italics tab!!) looking at the > child. > > I dont want children to be looked at in terms of their labels - I > want them to be looked at as individuals who have a condition (not > just autism - any condition). If professionals did their jobs > properly this would mean that they looked at how the child was > coping in given environments, asked parents what they thought their > child's needs were, and planned services accordingly. > > In P's new school - and the reason why it is working so brilliantly - > the staff do not treat him primarily as a child with autism - they > treat him as a child, look at what his difficulties are in > acceessing the curriculum, and make accommodations accordingly. > > If he had gone to the autism specific school - where the label is > the primary driver for everything they do - then he would be getting > TEACCH (which he doesnt need), social stories (which dont work for > him), and no access to NT kids (which he does need - in small > numbers). > > I suppose my problem with the label is that it can actually often > mask the true need or lead to inappropriate services/interventions > or with-holding/denial of services because of the assumptions that > come with it. > > An example would perhaps be a child with autism who also has OCD - > lots of professionals whould look at this and see the label 'autism' > which would then preclude the child from having the OCD issues > properly looked at - because profs take the view that the OCD > is 'just part of the autism'. > > Gut issues are another case in point - our kids cant get treatment > from Paed Gastros because the prof view is that 'gut issues are just > part of the autism' - again the label is precluding the needs being > looked at. At the other end you have gastros like Dr Fell who > (correctly) ignores the autism and looks at the need. > > I guess I am just advocating taking the 'Dr Fell' approach > > Zoe > > > > > > > > > > Why would you prefer it if society didn't look at the label for > > > severity? > > > > I don't understand why anyone would not want another more > severe > > > child > > > > labelled as what they are. > > > > Do you think LFA children or adults get more funding? If they > do > > > then it > > > > certainly isn't spent on anything useful. was in a school > > > where he was > > > > level 4 for funding[very high] his money went towards all the > > > expensive > > > > equipment needed for more physically disabled children, he > himself > > > didn't get a scrap > > > > extra. > > > > I agree with you that even within certain categories the > children > > > are not > > > > all the same, but they will have the same degree of autism. > Like I > > > said before > > > > there is a huge difference in my 2 children to the point that I > > > have often > > > > felt as though I were being dramatic calling autistic > in > > > the first > > > > place, no one who met my children would think they had the same > > > condition. > > > > I for one would certainly say the needs of a young man with > HFA who > > > is > > > > suffering mental health problems are less severe than an LFA, > non > > > verbal and self > > > > harming. > > > > Firstly the HFA person can be reached, they definitely > understand > > > what is > > > > being said and can cooperate fully in any treatment, they can > tell > > > whoever needs > > > > to know exactly what they are experiencing, they can also > refuse > > > treatment. > > > > LFA are far more difficult to reach, there is no certainty they > > > have > > > > understood what has been said and are often non co-operative, > they > > > rarely able to > > > > tell what they are experiencing [this is the hardest thing for > me > > > personally] > > > > they cannot refuse treatment, simply they are far more > vulnerable. > > > > It never ceases to amaze me though that people think there is > no > > > point in > > > > different labels for very low functioning, non verbal, self > > > harming, pooh > > > > smearing and eating, children with high functioning, talking, > > > reading, writing, > > > > behaving, toilet trained, children. > > > > I wonder how many would agree though if I exercised my right to > > > have in > > > > mainstream sitting next to their child, bet they would spot the > > > difference in > > > > a nanno second. > > > > Vicky > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Can't disagree with any of that, Zoe. I just feel sorry for my friend who is still battling against people saying there is nothing wrong with her child at all! I think lots of us went through that prior to diagnosis, people saying things to us like 'my child didn't talk either ' and 'my child did (... whatever behaviour it is you're worried about) too' so I am grateful for the recognition of the needs and that's all a label of autism is anyway in mainstream because the mainstream view is that we don't understand what autism is or what causes it. The problem is people's interpretation of the label but, as most medics appear to be misinterpreting it, then I take your point. Sara Zoe wrote: > > The problem there is that chicken pox or a broken leg can be relied > upon to be fairly similar in each child and to result in a similar > level of need for treatment/support. > > Autism is so different for different children and their families - > and that is why I think we should be looking at need instead of > label. > > If you look at label, then the professionals make judgements about > what that label means and what the needs are WITHOUT (not shouting, > just emphasising - I wish there was an italics tab!!) looking at the > child. > > I dont want children to be looked at in terms of their labels - I > want them to be looked at as individuals who have a condition (not > just autism - any condition). If professionals did their jobs > properly this would mean that they looked at how the child was > coping in given environments, asked parents what they thought their > child's needs were, and planned services accordingly. > > In P's new school - and the reason why it is working so brilliantly - > the staff do not treat him primarily as a child with autism - they > treat him as a child, look at what his difficulties are in > acceessing the curriculum, and make accommodations accordingly. > > If he had gone to the autism specific school - where the label is > the primary driver for everything they do - then he would be getting > TEACCH (which he doesnt need), social stories (which dont work for > him), and no access to NT kids (which he does need - in small > numbers). > > I suppose my problem with the label is that it can actually often > mask the true need or lead to inappropriate services/interventions > or with-holding/denial of services because of the assumptions that > come with it. > > An example would perhaps be a child with autism who also has OCD - > lots of professionals whould look at this and see the label 'autism' > which would then preclude the child from having the OCD issues > properly looked at - because profs take the view that the OCD > is 'just part of the autism'. > > Gut issues are another case in point - our kids cant get treatment > from Paed Gastros because the prof view is that 'gut issues are just > part of the autism' - again the label is precluding the needs being > looked at. At the other end you have gastros like Dr Fell who > (correctly) ignores the autism and looks at the need. > > I guess I am just advocating taking the 'Dr Fell' approach > > Zoe > > > > > > > > > > Why would you prefer it if society didn't look at the label for > > > severity? > > > > I don't understand why anyone would not want another more > severe > > > child > > > > labelled as what they are. > > > > Do you think LFA children or adults get more funding? If they > do > > > then it > > > > certainly isn't spent on anything useful. was in a school > > > where he was > > > > level 4 for funding[very high] his money went towards all the > > > expensive > > > > equipment needed for more physically disabled children, he > himself > > > didn't get a scrap > > > > extra. > > > > I agree with you that even within certain categories the > children > > > are not > > > > all the same, but they will have the same degree of autism. > Like I > > > said before > > > > there is a huge difference in my 2 children to the point that I > > > have often > > > > felt as though I were being dramatic calling autistic > in > > > the first > > > > place, no one who met my children would think they had the same > > > condition. > > > > I for one would certainly say the needs of a young man with > HFA who > > > is > > > > suffering mental health problems are less severe than an LFA, > non > > > verbal and self > > > > harming. > > > > Firstly the HFA person can be reached, they definitely > understand > > > what is > > > > being said and can cooperate fully in any treatment, they can > tell > > > whoever needs > > > > to know exactly what they are experiencing, they can also > refuse > > > treatment. > > > > LFA are far more difficult to reach, there is no certainty they > > > have > > > > understood what has been said and are often non co-operative, > they > > > rarely able to > > > > tell what they are experiencing [this is the hardest thing for > me > > > personally] > > > > they cannot refuse treatment, simply they are far more > vulnerable. > > > > It never ceases to amaze me though that people think there is > no > > > point in > > > > different labels for very low functioning, non verbal, self > > > harming, pooh > > > > smearing and eating, children with high functioning, talking, > > > reading, writing, > > > > behaving, toilet trained, children. > > > > I wonder how many would agree though if I exercised my right to > > > have in > > > > mainstream sitting next to their child, bet they would spot the > > > difference in > > > > a nanno second. > > > > Vicky > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Hi Vicky, its awfully frustrating and soul destroying to a point. I have just had the school board on to me today insisting on a meeting for me to explain what we do via our home ed program. They say he has a statement in place from last year and they want it reveiwed. Despite the fact, the statement isnt worth the paper its written on, the only way he would ever get services is if i have him assessed by an ed psych for her to coincidentally find him LD with a IQ of under 70 of course. They want their label, so they can prove the statement would have useless anyway (he is too " autistic " for anything ot have helped him?) I dont know, labels labels. If i was to allow them to give him another label, it would make their job so much easier cause then they could pigeon hole him as LD or SLD and at least then they could draw down monies according to how they are distributed (LD and mental health). but the new label wont get him anything he needs, just more judgements and horrible beliefs about him. I too know there is amazing intelligence inside my boy, and labeling him as LD or whatever isnt going to make a jot of difference because the services put in place will be administered by persons, generally who have made up their minds about our children. Self fulfilling prophesies will be established and whammo, you get a kid who doesnt move on (cause he autism, right? and LD right?) No, the Dawsons and Shores of this world are not my son, their ASD is different (at least for now) compared to my boy, but as I said in my house, we dont even use the word autism, cause its meaningless. I have a boy with certain difficulties which can be explained in much better ways and in far more detail than " autism " . You can have a number of different types of apples - red, juicy, ripe, delicious, green, rotten, fresh, etc. But we all know its still an apple. As soon as the autism word is used re: our children, it seems society forgets about the organism and only sees that word autism, the humanity, personality goes out the window and the label takes over. You can have 1 label for it or 10 but anything that refers to the autism seems to throw the child away in favor of the label. imo -- In Autism-Biomedical-Europe , MaddiganV@... wrote: > > Well firstly my kids will have long white beards before any of that is ever > taken into consideration, but maybe for kids in the future, something the NAS > would want probably. > As for OCD, we have been down that road and higher functioning children do > get assessed for OCD, if was just looked at as having autism as you > suggest he would not have been seen, we have been told this. > On specific testing he has been found to be more affected than first thought > and is now going to access the LD service, but he would just be treated as a > co morbid if we had started from the stand point of him being " autistic " . > Then there is the general usage of " autism " it's not realistic for parents > to just refer to their children as that alone, they are higher functioning, > moderate or severe, ofcourse many have Islands of ability, that isn't the > discussion though, the discussion was what is real autism. > When was assessed at Nottingham they dx him as having profound autism, > why would I not want them to tell me that? > Why would I want to take the little comfort we have that is at least > a more able autistic and decide to label him the same as ? > I actually always believe child first and condition second, never thought > any different and am certainly not in the flag waving different is cool camp, I > do believe there is a normal child in there and depending on how severely > affected they are by autism the normal child can get through. > I blame autism for both my childrens problems and their difficulties in all > things are in direct correlation to the severity of their autism, that doesn't > mean higher functioning children or adults don't have significant problems, > compared to normal they are very significant. > As for schools I don't like any of them and we have been through several, I > don't think the training is anywhere near as comprehensive as it needs to be, > I think classroom assistants are for the most part educating my children, > using the word educating very loosely here. > I would even go further and say if my children were normal I would work 10 > jobs to send them to independent schools, it's just my opinion but I think the > entire education system is sub standard and SEN is at the bottom of the pile. > Vicky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 <<<All special schools are now " Complex Needs " [is there any other?] so no more SLD or MLD, but you can bet your last penny it isn't because they don't believe in labelling kids, it's so they can throw all SEN in the closest school thus reducing transport costs, they can also put all the excluded kids for behaviour problems in these now " complex needs " schools and say they have EBD, no matter that they are even more of a disturbance to kids with autism of any degree than they were to the mainstream they have been removed from.>>> I agree with you here, Vicky. I think you have done very well, by the way, in getting properly assessed at last. My experience is that LAs go for the simplest diagnosis posssible and don't want all the child's SEN identified, because once identified, they have a legal duty to provide for them. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Just picking up on the annual review bit BB, I had this with Edith home edding. For the first couple of years a terrified SEN worker came and we went through the statement together. You are the head of your own school (they explained to me). So you are reviewing the statement and saying whether it is still appropriate or needs to be changed. At the earlier times they adamantly refused any financial support. But last time (July 2007) Connexions came (as the Code of Practice says they should) and the lea funded a project proposed by Connexions. Only 6 hours a week but v welcome. Someone suggested to me that the DDA had brought about the lea's change of heart. They also fought SS on my behalf which was quite helpful. Quite separately a home ed consultant came to my house, talked to me about Edith and what we did together and expressed admiration and a willingness to help. Each year she wrote admiring reports which would have come in useful if I had ever had to fight off intrusive social workers (as looked possible 18 months ago). So bear with it, if you can. If you let them do it then they will feel reassured and less likely to worry. And, you never know, you might get something out of them, if not now, then in years to come. Sally bbrowne123 wrote: > > Hi Vicky, its awfully frustrating and soul destroying to a point. > > I have just had the school board on to me today insisting on a > meeting for me to explain what we do via our home ed program. They > say he has a statement in place from last year and they want it > reveiwed. Despite the fact, the statement isnt worth the paper its > written on, the only way he would ever get services is if i have him > assessed by an ed psych for her to coincidentally find him LD with a > IQ of under 70 of course. They want their label, so they can prove > the statement would have useless anyway (he is too " autistic " for > anything ot have helped him?) I dont know, labels labels. > > If i was to allow them to give him another label, it would make their > job so much easier cause then they could pigeon hole him as LD or SLD > and at least then they could draw down monies according to how they > are distributed (LD and mental health). > > but the new label wont get him anything he needs, just more > judgements and horrible beliefs about him. > > I too know there is amazing intelligence inside my boy, and labeling > him as LD or whatever isnt going to make a jot of difference because > the services put in place will be administered by persons, generally > who have made up their minds about our children. Self fulfilling > prophesies will be established and whammo, you get a kid who doesnt > move on (cause he autism, right? and LD right?) > > No, the Dawsons and Shores of this world are not my > son, their ASD is different (at least for now) compared to my boy, > but as I said in my house, we dont even use the word autism, cause > its meaningless. I have a boy with certain difficulties which can be > explained in much better ways and in far more detail than " autism " . > > You can have a number of different types of apples - red, juicy, > ripe, delicious, green, rotten, fresh, etc. But we all know its still > an apple. As soon as the autism word is used re: our children, it > seems society forgets about the organism and only sees that word > autism, the humanity, personality goes out the window and the label > takes over. You can have 1 label for it or 10 but anything that > refers to the autism seems to throw the child away in favor of the > label. > > imo > > -- In Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>, MaddiganV@... wrote: > > > > Well firstly my kids will have long white beards before any of that > is ever > > taken into consideration, but maybe for kids in the future, > something the NAS > > would want probably. > > As for OCD, we have been down that road and higher functioning > children do > > get assessed for OCD, if was just looked at as having > autism as you > > suggest he would not have been seen, we have been told this. > > On specific testing he has been found to be more affected than > first thought > > and is now going to access the LD service, but he would just be > treated as a > > co morbid if we had started from the stand point of him > being " autistic " . > > Then there is the general usage of " autism " it's not realistic for > parents > > to just refer to their children as that alone, they are higher > functioning, > > moderate or severe, ofcourse many have Islands of ability, that > isn't the > > discussion though, the discussion was what is real autism. > > When was assessed at Nottingham they dx him as having profound > autism, > > why would I not want them to tell me that? > > Why would I want to take the little comfort we have that is > at least > > a more able autistic and decide to label him the same as ? > > I actually always believe child first and condition second, never > thought > > any different and am certainly not in the flag waving different is > cool camp, I > > do believe there is a normal child in there and depending on how > severely > > affected they are by autism the normal child can get through. > > I blame autism for both my childrens problems and their > difficulties in all > > things are in direct correlation to the severity of their autism, > that doesn't > > mean higher functioning children or adults don't have significant > problems, > > compared to normal they are very significant. > > As for schools I don't like any of them and we have been through > several, I > > don't think the training is anywhere near as comprehensive as it > needs to be, > > I think classroom assistants are for the most part educating my > children, > > using the word educating very loosely here. > > I would even go further and say if my children were normal I would > work 10 > > jobs to send them to independent schools, it's just my opinion but > I think the > > entire education system is sub standard and SEN is at the bottom of > the pile. > > Vicky > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.175 / Virus Database: 270.8.4/1752 - Release Date: 28/10/2008 10:04 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Just picking up on the annual review bit BB, I had this with Edith home edding. For the first couple of years a terrified SEN worker came and we went through the statement together. You are the head of your own school (they explained to me). So you are reviewing the statement and saying whether it is still appropriate or needs to be changed. At the earlier times they adamantly refused any financial support. But last time (July 2007) Connexions came (as the Code of Practice says they should) and the lea funded a project proposed by Connexions. Only 6 hours a week but v welcome. Someone suggested to me that the DDA had brought about the lea's change of heart. They also fought SS on my behalf which was quite helpful. Quite separately a home ed consultant came to my house, talked to me about Edith and what we did together and expressed admiration and a willingness to help. Each year she wrote admiring reports which would have come in useful if I had ever had to fight off intrusive social workers (as looked possible 18 months ago). So bear with it, if you can. If you let them do it then they will feel reassured and less likely to worry. And, you never know, you might get something out of them, if not now, then in years to come. Sally bbrowne123 wrote: > > Hi Vicky, its awfully frustrating and soul destroying to a point. > > I have just had the school board on to me today insisting on a > meeting for me to explain what we do via our home ed program. They > say he has a statement in place from last year and they want it > reveiwed. Despite the fact, the statement isnt worth the paper its > written on, the only way he would ever get services is if i have him > assessed by an ed psych for her to coincidentally find him LD with a > IQ of under 70 of course. They want their label, so they can prove > the statement would have useless anyway (he is too " autistic " for > anything ot have helped him?) I dont know, labels labels. > > If i was to allow them to give him another label, it would make their > job so much easier cause then they could pigeon hole him as LD or SLD > and at least then they could draw down monies according to how they > are distributed (LD and mental health). > > but the new label wont get him anything he needs, just more > judgements and horrible beliefs about him. > > I too know there is amazing intelligence inside my boy, and labeling > him as LD or whatever isnt going to make a jot of difference because > the services put in place will be administered by persons, generally > who have made up their minds about our children. Self fulfilling > prophesies will be established and whammo, you get a kid who doesnt > move on (cause he autism, right? and LD right?) > > No, the Dawsons and Shores of this world are not my > son, their ASD is different (at least for now) compared to my boy, > but as I said in my house, we dont even use the word autism, cause > its meaningless. I have a boy with certain difficulties which can be > explained in much better ways and in far more detail than " autism " . > > You can have a number of different types of apples - red, juicy, > ripe, delicious, green, rotten, fresh, etc. But we all know its still > an apple. As soon as the autism word is used re: our children, it > seems society forgets about the organism and only sees that word > autism, the humanity, personality goes out the window and the label > takes over. You can have 1 label for it or 10 but anything that > refers to the autism seems to throw the child away in favor of the > label. > > imo > > -- In Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>, MaddiganV@... wrote: > > > > Well firstly my kids will have long white beards before any of that > is ever > > taken into consideration, but maybe for kids in the future, > something the NAS > > would want probably. > > As for OCD, we have been down that road and higher functioning > children do > > get assessed for OCD, if was just looked at as having > autism as you > > suggest he would not have been seen, we have been told this. > > On specific testing he has been found to be more affected than > first thought > > and is now going to access the LD service, but he would just be > treated as a > > co morbid if we had started from the stand point of him > being " autistic " . > > Then there is the general usage of " autism " it's not realistic for > parents > > to just refer to their children as that alone, they are higher > functioning, > > moderate or severe, ofcourse many have Islands of ability, that > isn't the > > discussion though, the discussion was what is real autism. > > When was assessed at Nottingham they dx him as having profound > autism, > > why would I not want them to tell me that? > > Why would I want to take the little comfort we have that is > at least > > a more able autistic and decide to label him the same as ? > > I actually always believe child first and condition second, never > thought > > any different and am certainly not in the flag waving different is > cool camp, I > > do believe there is a normal child in there and depending on how > severely > > affected they are by autism the normal child can get through. > > I blame autism for both my childrens problems and their > difficulties in all > > things are in direct correlation to the severity of their autism, > that doesn't > > mean higher functioning children or adults don't have significant > problems, > > compared to normal they are very significant. > > As for schools I don't like any of them and we have been through > several, I > > don't think the training is anywhere near as comprehensive as it > needs to be, > > I think classroom assistants are for the most part educating my > children, > > using the word educating very loosely here. > > I would even go further and say if my children were normal I would > work 10 > > jobs to send them to independent schools, it's just my opinion but > I think the > > entire education system is sub standard and SEN is at the bottom of > the pile. > > Vicky > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.175 / Virus Database: 270.8.4/1752 - Release Date: 28/10/2008 10:04 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Hi Sally, i never thought of putting it that way, i.e. " head of my own school " . I just wish, though, that they would go away. I guess they wont, so will have to be smart about it. thanks > > > > > > Well firstly my kids will have long white beards before any of that > > is ever > > > taken into consideration, but maybe for kids in the future, > > something the NAS > > > would want probably. > > > As for OCD, we have been down that road and higher functioning > > children do > > > get assessed for OCD, if was just looked at as having > > autism as you > > > suggest he would not have been seen, we have been told this. > > > On specific testing he has been found to be more affected than > > first thought > > > and is now going to access the LD service, but he would just be > > treated as a > > > co morbid if we had started from the stand point of him > > being " autistic " . > > > Then there is the general usage of " autism " it's not realistic for > > parents > > > to just refer to their children as that alone, they are higher > > functioning, > > > moderate or severe, ofcourse many have Islands of ability, that > > isn't the > > > discussion though, the discussion was what is real autism. > > > When was assessed at Nottingham they dx him as having profound > > autism, > > > why would I not want them to tell me that? > > > Why would I want to take the little comfort we have that is > > at least > > > a more able autistic and decide to label him the same as ? > > > I actually always believe child first and condition second, never > > thought > > > any different and am certainly not in the flag waving different is > > cool camp, I > > > do believe there is a normal child in there and depending on how > > severely > > > affected they are by autism the normal child can get through. > > > I blame autism for both my childrens problems and their > > difficulties in all > > > things are in direct correlation to the severity of their autism, > > that doesn't > > > mean higher functioning children or adults don't have significant > > problems, > > > compared to normal they are very significant. > > > As for schools I don't like any of them and we have been through > > several, I > > > don't think the training is anywhere near as comprehensive as it > > needs to be, > > > I think classroom assistants are for the most part educating my > > children, > > > using the word educating very loosely here. > > > I would even go further and say if my children were normal I would > > work 10 > > > jobs to send them to independent schools, it's just my opinion but > > I think the > > > entire education system is sub standard and SEN is at the bottom of > > the pile. > > > Vicky > > > > > > > > > ------------------------------------------------------------------ ------ > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.175 / Virus Database: 270.8.4/1752 - Release Date: 28/10/2008 10:04 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Yes Rock on!!!!! > > While I agree that it is frustrating and in many ways impossible to compare > Kanner Autism and Asperger's, it is the same stuff that helps us recover our > kids. So if I were in a community with only moms of Aspie kids, I would be > nowhere close to recovering my child, because many moms chose to ignore the > stimming / social issues, because they can. Moms of severly autistic kids > however are the most brave and relentlessly researching breed I have found. > It is their / your work, that brought my son to where he is today. > > So while the results vary a lot, we need the same tools for recovery. And > that, above all, should unite us. > > > > Christiane > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 > > > Quite separately a home ed consultant came to my house, talked to me > about Edith and what we did together and expressed admiration and a > willingness to help. Each year she wrote admiring reports which would > have come in useful if I had ever had to fight off intrusive social > workers (as looked possible 18 months ago). > Not followed this thread, so sorry if I'm not adding anything useful, but I also had the LEA home ed consultant in not too long ago and she was just the loveliest, most supportive person I've run into in an education setting in a LONG time. If you have a person like this whose job it is to write reports, etc, she could be very helpful in many situations I would think. In our case, with me homeschooling two kids (one with ASD) she was really clear that she wanted to help and not hinder me in any way. God I wish everyone were like that!! Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 > > > Quite separately a home ed consultant came to my house, talked to me > about Edith and what we did together and expressed admiration and a > willingness to help. Each year she wrote admiring reports which would > have come in useful if I had ever had to fight off intrusive social > workers (as looked possible 18 months ago). > Not followed this thread, so sorry if I'm not adding anything useful, but I also had the LEA home ed consultant in not too long ago and she was just the loveliest, most supportive person I've run into in an education setting in a LONG time. If you have a person like this whose job it is to write reports, etc, she could be very helpful in many situations I would think. In our case, with me homeschooling two kids (one with ASD) she was really clear that she wanted to help and not hinder me in any way. God I wish everyone were like that!! Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 We've had the same experience as Sally and Anita, LEA home ed consultant islovely writes letters full of admiration but has always been clear from the outset that she cant help me get any money. Annual review is a separate issue, stressful and we get nothing from his statement but I have kept it in place as if Joe is ever ready for school it will be easier to have a statement already in place than to start from scratch. It is stressful because each year I hope the LEA might support us a little and each year of course they don't, not sure why I am choosing to let myself get stressed about it. I have toyed with asking them to hold the annual review without me but haven't been brave enough to let this happen in case they decide he must go to school! x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 , that is where I am at right now. I dont want to go, but I just had a chat with a very good home edding friend who told me " do not let their anxiety impact on you " good advice. At the end of the day, they are simply crossing their t's and dotting their i's to cover their backs. If my kid came out of his program knowing the theory of relativity at age 6 they would not give a damn, they dont really care at all, they only worry aobut themselves that they do not do something wrong in terms of their jobs. I am so confident and know how well home edding has helped my boy and continues to help him, - i suppose i was getting nervous about nothing. Like you, we dont need an annual review of statment cause we dont get any services, its a joke. > > We've had the same experience as Sally and Anita, LEA home ed > consultant islovely writes letters full of admiration but has always > been clear from the outset that she cant help me get any money. > Annual review is a separate issue, stressful and we get nothing from > his statement but I have kept it in place as if Joe is ever ready for > school it will be easier to have a statement already in place than to > start from scratch. It is stressful because each year I hope the LEA > might support us a little and each year of course they don't, not sure > why I am choosing to let myself get stressed about it. I have toyed > with asking them to hold the annual review without me but haven't been > brave enough to let this happen in case they decide he must go to > school! > x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 nfortunately, our local home ed advisor is a jobsworth and sent a number of letters to me (he finally gave up) intimating, " it would be in your interest to cooperate, etc). argggh. ate with what? the proof is in the pudding, my boy can talk now, he could not talk / function in school. but alas nothing said of that, just constant referall to our program and how it is not peer reviewed., etc. > > > > > > > Quite separately a home ed consultant came to my house, talked to me > > about Edith and what we did together and expressed admiration and a > > willingness to help. Each year she wrote admiring reports which > would > > have come in useful if I had ever had to fight off intrusive social > > workers (as looked possible 18 months ago). > > > > Not followed this thread, so sorry if I'm not adding anything useful, > but I also had the LEA home ed consultant in not too long ago and she > was just the loveliest, most supportive person I've run into in an > education setting in a LONG time. If you have a person like this > whose job it is to write reports, etc, she could be very helpful in > many situations I would think. In our case, with me homeschooling > two kids (one with ASD) she was really clear that she wanted to help > and not hinder me in any way. God I wish everyone were like that!! > > Anita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Just do it. tick their boxes. One day you might get something out if it. If not, it's only an hour of your time. Get someone from a disability group to come and then you can have a coffee together as well Sally bbrowne123 wrote: > > , that is where I am at right now. I dont want to go, but I just > had a chat with a very good home edding friend who told me " do not let > their anxiety impact on you " good advice. At the end of the day, they > are simply crossing their t's and dotting their i's to cover their > backs. If my kid came out of his program knowing the theory of > relativity at age 6 they would not give a damn, they dont really care > at all, they only worry aobut themselves that they do not do something > wrong in terms of their jobs. > > I am so confident and know how well home edding has helped my boy and > continues to help him, - i suppose i was getting nervous about nothing. > Like you, we dont need an annual review of statment cause we dont get > any services, its a joke. > > > > > > We've had the same experience as Sally and Anita, LEA home ed > > consultant islovely writes letters full of admiration but has always > > been clear from the outset that she cant help me get any money. > > Annual review is a separate issue, stressful and we get nothing from > > his statement but I have kept it in place as if Joe is ever ready for > > school it will be easier to have a statement already in place than to > > start from scratch. It is stressful because each year I hope the LEA > > might support us a little and each year of course they don't, not > sure > > why I am choosing to let myself get stressed about it. I have toyed > > with asking them to hold the annual review without me but haven't > been > > brave enough to let this happen in case they decide he must go to > > school! > > x > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.175 / Virus Database: 270.8.4/1753 - Release Date: 28/10/2008 21:20 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 ---Head of own school !!! love that ! we are in a similar position too .I have moved back to a horrible lea,I have an annual review in dec with people who have never met my son ,don't give a damn(in the past threatened with neglect ) but this time i am not as stressed because as you said they have to be seen to be doing their job. Also have now experienced the postcode lottery having lived for a couple of years in another lea where their policy was totally different and bent over backwards for the child, tons of compliments and they put their money where their mouth was.etc . Nina In Autism-Biomedical-Europe , " bbrowne123 " wrote: > > , that is where I am at right now. I dont want to go, but I just > had a chat with a very good home edding friend who told me " do not let > their anxiety impact on you " good advice. At the end of the day, they > are simply crossing their t's and dotting their i's to cover their > backs. If my kid came out of his program knowing the theory of > relativity at age 6 they would not give a damn, they dont really care > at all, they only worry aobut themselves that they do not do something > wrong in terms of their jobs. > > I am so confident and know how well home edding has helped my boy and > continues to help him, - i suppose i was getting nervous about nothing. > Like you, we dont need an annual review of statment cause we dont get > any services, its a joke. > > > > > > We've had the same experience as Sally and Anita, LEA home ed > > consultant islovely writes letters full of admiration but has always > > been clear from the outset that she cant help me get any money. > > Annual review is a separate issue, stressful and we get nothing from > > his statement but I have kept it in place as if Joe is ever ready for > > school it will be easier to have a statement already in place than to > > start from scratch. It is stressful because each year I hope the LEA > > might support us a little and each year of course they don't, not > sure > > why I am choosing to let myself get stressed about it. I have toyed > > with asking them to hold the annual review without me but haven't > been > > brave enough to let this happen in case they decide he must go to > > school! > > x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 In our borough we have various special schools one for Social and Communications Disorders - primary only 96% have ASD label, one for children with statements of general learning, language and communication difficulties and special educational needs (SEN) between the ages of 11 and 16 becoming a feeder for asd primary above, one for EBD children 4-16, one school for children and young people between the ages of 2 and 19 years who have severe and profound learning difficulties and a range of additional special educational needs including: physical disabilities,sensory impairments, autism spectrum disorders, challenging behaviour, medical needs. There is a pupil referral unit for excluded children and another shoe string unit for agressive children who do not fit in any of the above who are usually home educated but need access to specialist subject teaching for GCSE. there are no residential schools Because there are special schools it does mean that the mainstreams Heads do not have to put too much effort into making inclusion work but the LEA have started to crack down on that as the specials are all pretty much full. A couple of the neighbouring boroughs have only inclusive mainstreams but at one stage there were an awful lot being bussed into the specials in our borough. It seems a difficult balance to achieve for any LEA and I am not saying that all of the above schools fulfill the needs of the children. Their mere presence does mean it is difficult to get any out of borough placement tho.... > <<<All special schools are now " Complex Needs " [is there any other?] so > no more SLD or MLD, but you can bet your last penny it isn't because > they don't believe in labelling kids, it's so they can throw all SEN in > the closest school thus reducing transport costs, they can also put all > the excluded kids for behaviour problems in these now " complex needs " > schools and say they have EBD, no matter that they are even more of a > disturbance to kids with autism of any degree than they were to the > mainstream they have been removed from.>>> > > I agree with you here, Vicky. I think you have done very well, by the > way, in getting properly assessed at last. > > My experience is that LAs go for the simplest diagnosis posssible and > don't want all the child's SEN identified, because once identified, > they have a legal duty to provide for them. > Margaret > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 If I were writing SEN educational policy I would stop leas running special schools. I would make them all independent and give parents the right to take their statement any where they thought they could get good value for it. Sally claire_downey wrote: > > > In our borough we have various special schools > > one for Social and Communications Disorders - primary only 96% have > ASD label, > > one for children with statements of general learning, language and > communication difficulties and special educational needs (SEN) > between the ages of 11 and 16 becoming a feeder for asd primary > above, > > one for EBD children 4-16, > > one school for children and young people between the ages of 2 and 19 > years who have severe and profound learning difficulties and a range > of additional special educational needs including: > physical disabilities,sensory impairments, autism spectrum disorders, > challenging behaviour, medical needs. > > There is a pupil referral unit for excluded children and another shoe > string unit for agressive children who do not fit in any of the above > who are usually home educated but need access to specialist subject > teaching for GCSE. > > there are no residential schools > > Because there are special schools it does mean that the mainstreams > Heads do not have to put too much effort into making inclusion work > but the LEA have started to crack down on that as the specials are > all pretty much full. A couple of the neighbouring boroughs have only > inclusive mainstreams but at one stage there were an awful lot being > bussed into the specials in our borough. It seems a difficult balance > to achieve for any LEA and I am not saying that all of the above > schools fulfill the needs of the children. Their mere presence does > mean it is difficult to get any out of borough placement tho.... > > > > <<<All special schools are now " Complex Needs " [is there any > other?] so > > no more SLD or MLD, but you can bet your last penny it isn't > because > > they don't believe in labelling kids, it's so they can throw all > SEN in > > the closest school thus reducing transport costs, they can also put > all > > the excluded kids for behaviour problems in these now " complex > needs " > > schools and say they have EBD, no matter that they are even more of > a > > disturbance to kids with autism of any degree than they were to the > > mainstream they have been removed from.>>> > > > > I agree with you here, Vicky. I think you have done very well, by > the > > way, in getting properly assessed at last. > > > > My experience is that LAs go for the simplest diagnosis posssible > and > > don't want all the child's SEN identified, because once identified, > > they have a legal duty to provide for them. > > Margaret > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.175 / Virus Database: 270.8.4/1753 - Release Date: 28/10/2008 21:20 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Guess ours don't have any boxes to tick :-0 We asked permission to home school son and withdrew him from an SLD school in Dec 07. Until now we have not had any response to our request, despite following it up with another letter and telephone call. We have been home schooling since last Dec, no support and no word from our LEA. Our paediatrician recently wrote to the LEA asking them if they would give us a little bit of support etc especially as with him being home schooled it is saving them a LOT of money! Still no word, and I won't hold my breath. In fact his annual review is usually round about Sept/October and not a word about this. Do I just keep quiet??? > > > > > > We've had the same experience as Sally and Anita, LEA home ed > > > consultant islovely writes letters full of admiration but has always > > > been clear from the outset that she cant help me get any money. > > > Annual review is a separate issue, stressful and we get nothing from > > > his statement but I have kept it in place as if Joe is ever ready for > > > school it will be easier to have a statement already in place than to > > > start from scratch. It is stressful because each year I hope the LEA > > > might support us a little and each year of course they don't, not > > sure > > > why I am choosing to let myself get stressed about it. I have toyed > > > with asking them to hold the annual review without me but haven't > > been > > > brave enough to let this happen in case they decide he must go to > > > school! > > > x > > > > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.175 / Virus Database: 270.8.4/1753 - Release Date: 28/10/2008 21:20 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Depends what you want them to do. If you want the support you may have to fight for it. They should be reviewing the statement annually. You should write and point that out, give them 10 days to reply and then write further up the ladder. When you have got to the top, switch to the complaints department. After that, you have exhausted their internal complaints procedure and can contact the Ombudsman. Assuming you get a response somewhere along the line you should get an annual review. The SEN Code of Practice says that they should provide all support necessary under the statement. Southwark Lea used to have a blanket policy of no support for home ed -- yours may too. Under the DDA apparently this is illegal because the individual circumstances of every individual should be considered before reaching a decision ie blanket policies are out. Get a copy of the paediatricians letter and any other proof of need. Cite the disability discrimination act and make sure that the annual review recommends some form of support (you are the head of your own school). Then go to panel with that and if refused, appeal. They may be terribly twitchy that if they write Home Ed as a placement on the statement you will take them apart at Tribunal. Or they may just not understand what they have to do next. But they must maintain the statement etc xx Sally Scorer wrote: > > > Guess ours don't have any boxes to tick :-0 We asked permission to > home school son and withdrew him from an SLD school in Dec 07. Until > now we have not had any response to our request, despite following it > up with another letter and telephone call. We have been home schooling > since last Dec, no support and no word from our LEA. Our paediatrician > recently wrote to the LEA asking them if they would give us a little bit > of support etc especially as with him being home schooled it is saving > them a LOT of money! Still no word, and I won't hold my breath. In > fact his annual review is usually round about Sept/October and not a > word about this. Do I just keep quiet??? > > > > > > > > > > We've had the same experience as Sally and Anita, LEA home ed > > > > consultant islovely writes letters full of admiration but has > always > > > > been clear from the outset that she cant help me get any money. > > > > Annual review is a separate issue, stressful and we get nothing > from > > > > his statement but I have kept it in place as if Joe is ever ready > for > > > > school it will be easier to have a statement already in place than > to > > > > start from scratch. It is stressful because each year I hope the > LEA > > > > might support us a little and each year of course they don't, not > > > sure > > > > why I am choosing to let myself get stressed about it. I have > toyed > > > > with asking them to hold the annual review without me but haven't > > > been > > > > brave enough to let this happen in case they decide he must go to > > > > school! > > > > x > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > Version: 8.0.175 / Virus Database: 270.8.4/1753 - Release Date: > 28/10/2008 21:20 > > > > > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.175 / Virus Database: 270.8.5/1755 - Release Date: 29/10/2008 17:27 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Depends what you want them to do. If you want the support you may have to fight for it. They should be reviewing the statement annually. You should write and point that out, give them 10 days to reply and then write further up the ladder. When you have got to the top, switch to the complaints department. After that, you have exhausted their internal complaints procedure and can contact the Ombudsman. Assuming you get a response somewhere along the line you should get an annual review. The SEN Code of Practice says that they should provide all support necessary under the statement. Southwark Lea used to have a blanket policy of no support for home ed -- yours may too. Under the DDA apparently this is illegal because the individual circumstances of every individual should be considered before reaching a decision ie blanket policies are out. Get a copy of the paediatricians letter and any other proof of need. Cite the disability discrimination act and make sure that the annual review recommends some form of support (you are the head of your own school). Then go to panel with that and if refused, appeal. They may be terribly twitchy that if they write Home Ed as a placement on the statement you will take them apart at Tribunal. Or they may just not understand what they have to do next. But they must maintain the statement etc xx Sally Scorer wrote: > > > Guess ours don't have any boxes to tick :-0 We asked permission to > home school son and withdrew him from an SLD school in Dec 07. Until > now we have not had any response to our request, despite following it > up with another letter and telephone call. We have been home schooling > since last Dec, no support and no word from our LEA. Our paediatrician > recently wrote to the LEA asking them if they would give us a little bit > of support etc especially as with him being home schooled it is saving > them a LOT of money! Still no word, and I won't hold my breath. In > fact his annual review is usually round about Sept/October and not a > word about this. Do I just keep quiet??? > > > > > > > > > > We've had the same experience as Sally and Anita, LEA home ed > > > > consultant islovely writes letters full of admiration but has > always > > > > been clear from the outset that she cant help me get any money. > > > > Annual review is a separate issue, stressful and we get nothing > from > > > > his statement but I have kept it in place as if Joe is ever ready > for > > > > school it will be easier to have a statement already in place than > to > > > > start from scratch. It is stressful because each year I hope the > LEA > > > > might support us a little and each year of course they don't, not > > > sure > > > > why I am choosing to let myself get stressed about it. I have > toyed > > > > with asking them to hold the annual review without me but haven't > > > been > > > > brave enough to let this happen in case they decide he must go to > > > > school! > > > > x > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > Version: 8.0.175 / Virus Database: 270.8.4/1753 - Release Date: > 28/10/2008 21:20 > > > > > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.175 / Virus Database: 270.8.5/1755 - Release Date: 29/10/2008 17:27 > > Quote Link to comment Share on other sites More sharing options...
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