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Everything posted by Sally44

  1. I'd also recommend calling IPSEA. Get the information about an Educational and Health Care Plan. Your son has SEN. If his needs are identified and provision put in place, he should be in school full time. If his current school cannot do that then he needs to go to a school that can. If he is around average cognitive ability that may mean either a LA school that caters for children like your son - or an independent primary school. My son refused school for the whole of year 5. He was already at a mainstream primary with 'enhanced' provision for children with ASD, but still could not cope. We eventually got a placement at an independent special school for year 6 onwards. He is still there and will leave age 19. His attendance has not always been brilliant becuase of the difficulties and anxiety he has. But there is no other school he could have coped with and certainly not a mainstream one. He was also too capable for a LA special school. Your son needs an EHCP asap, and you have to start now because everything is on a 'graduated approach'. That means they have to try something, have it fail, and then move onto the next thing. But a reduced timetable is not the answer at this stage. My son has been on a reduced timetable on and off over the years, again due to anxiety, ASD, OCD, Dyslexia etc etc. But he is now reading and writing and expected to take GCSEs.
  2. I would suggest looking into Educational and Health Care Plans. They go up to age 25. It should details all the difficulties of SEN a person has - including health issues such as anxiety and depession - and should detail exactly how each of those needs would be met. For example a dictaphone for recording lectures. Any additional study time opportunities with lecturers. Living accommodation Maybe taking the degree over a longer period? I would also suggest getting in touch with all the Universities that run the course you are interested in. Then get a breakdown of what the course actually entails - because that can be very different from place to place. Find out if there is any Autism specific support and how that works and who runs it and what you can expect from them in terms of weekly contact to ensure everything is still on track. Help with identifying any groups or societies that maybe enjoyable for you. Any way of other autistic or Aspergers students meeting up etc.
  3. I think this is one of the reasons for the change in diagnostic names. I think it was down to the child's acquisition of language. For example I would say my son was HFA when diagnosed. He learnt to speak by learning TV dialogues verbatim and then putting sentences together like a kind of verbal jigsaw from all the different TV programmes and films he ever watched. Now he is 16 and his speech has come on leaps and bounds. He still has an American accent, but his use of language and understanding of jokes etc is very good. I think there can also be other co-morbid diagnoses that can cloud the issue too. For example having sensory issues, auditory processing disorder, dyslexia etc can all affect educational attainment initially or throughout the school years. Typically those with Aspergers were thought to do okay in school [usually hitting problems around 13+ in secondary school]. However a child with Aspergers and the abovementioned co-morbid diagnoses may struggle in mainstream school for both academic and social reasons. The best advice I think for parents is to try to find out what the potential is. Which is not easy to do. For example my son is severly dyslexic and also has dyscalculia. But because he is assessed as around average cognitive ability, we were able to get funding for a specialist teacher. He started reading at age 15. He is going to take GCSE maths next year! And although we knew the potential was there, we were at a stage where we had accepted that he may never read or write. But if possible we wanted him to have this life skill. Left to the LA he would not have that 1:1 teaching and he would not be in an independent school and he most certainly would not be reading or taking GCSEs. And as any parent will tell you, getting these things in place takes years and years. It doesn't just fall into your lap. We have had to go to 4 educational tribunals in total. The first one with a solicitor. The second one with an advocate from a charity and the last two I did on my own. Another area of difficulty that is often overlooked is anxiety. Many of our children, and adults on the forum have diagnoses of anxiety disorders or OCD etc. These difficulties can be very upsetting for everyone, including the family. For example the World Health Organisation classes OCD in the top 10 health issues that have the greatest impact on social inclusion and ability to work and support yourself.
  4. You could lodge a complaint with the Local Governments Ombudsman. I have. The LGO did NOT find in our favour initially, because the LA told them a pack of lies, including that they have amended and finalised his Statement or issued Decision letters every year at the Annual Review and that they had finalised the EHCP in April. Well it still is not finalised!! So I complained to the LGO again, with the same complaint and asked the LGO to find out WHY the LA lied to them about having carried out Annual Reviews and having completed the EHCP when both we and his school are still working from a Statement finalised in 2011? I asked them for copies of any amended Statement or any Decision Letters following an AR from 2011 onwards, because we have not received any. LGO have phoned me and are going to investigate again. I specifically asked them to find out WHY the LA had lied and given them false information. I don't know that anything will come of it. We have complained before and LGO found in our favour and fined the LA and ordered them to pay that fine to us. So I think it is worth lodging a complaint. Not for the money. But because having lodged a complaint things tend to start moving on the LA side. I believe that there is still a timeframe within which an EHCP should be finalised. Same as previously for Statements. However LA's are not keeping to it.
  5. Still waiting for our son's EHCP to be finalised over a year later!! Hopefully should happen soon. We had similar. Turned up to the Annual Review, expecting the LA/School had sought all the advice they needed and had the EHCP ready. Actually the LA had done nothing. And then said it was the school's responsibility to put together the EHCP. Which is untrue. So now we are a year down the line. I've not pushed for them to finalise earlier because I want CBT therapy in for my son's OCD. And it is finally starting to happen. CAMHS needed alot of work to quantify and specify and I didn't want LA to finalise so I had to appeal to SEND yet again for CBT input. I did lodge a complaint with the LGO, and the LA have responded with lies about having amended and finalised the Statement in 2014 and 2015. They haven't. We and school are still working from one dated 2011. So LGO initially said there was no evidence to uphold my complaint. Now i've set the record straight, and have asked for copies of this 'imaginary' documentation that no-one has seen. Hope you are further down the line since January.
  6. Take a look at the SENAD or PRIORY group of schools. Also ask your local authority to send you a list of the specialist, independent secondary schools they use for children who are able and on the autistic spectrum. You maybe surprised that they already use at least one that might be suitable. You can also look on OFSTED and search independent specialist schools and see if anything comes up. Contact your local NAS group, and/or visit the NAS website and search for schools.
  7. Sally44

    Moving schools

    What you need to prove is that your son is not making academic, or social, or emotional progress where he is currently placed. That he is cognitively able and should be making progress and therefore is not suitable for any of the LA 'Special Schools'. That the gap is widening between him and his peers. That the independent school has skilled teaching staff and therapy staff that he NEEDS ie. for a SALT to say that he needs xx 1:1 therapy and xx group therapy with xx other children of a 'similar peer group', which the current mainstream school cannot provide. That due to his needs he needs class sizes of less than x pupils [usually around 8 for an independent school]. No mainstream school has classes of 8 pupils or less. That he needs 1:1 OT therapy for sensory integration or sensory issues, or dyspraxia etc. That he has a SpLD [does he have Dyslexia?] and needs a specialist teacher. You can ask for an emergency review of the Statement or you can ask for your child to convert to an Education and Health Care Plan [all Statements will revert to these]. I would check via somewhere like IPSEA, what you would need to do to get an early review of the Statement or EHCP, because you need that to take into account your parental choice of school BEFORE they move. Can I ask what the age of your child is? If you can prove the above, and that your parental choice of school is the only one that can meet their needs, then the LA must pay the fees, because the Statement or EHCP will name that school in part 4, and a Statement/EHCP is a legally binding document that the LA has to fund. So please find out the above from IPSEA. If you tell us your child's age that will also help with the advice given. And please ENSURE that you don't just go for the 'cheapest' independent school because you are afraid that the LA will refuse to pay the fees. A Statement and EHCP has NO LIMIT of the amount of funding it draws. It is about IDENTIFYING NEEDS, and finding a placement that can meet all those needs. For example my son goes to an independent school The fees are around £50K a year. Plus he has dyslexia, and his Statement says he must receive xx hours a week of specialist teaching from a teacher qualified to PATOSS Level 7. That is an additional £10K a year. He also gets two nights a week residential, which is another £12K a year. And we are seeking funding for a full time 1:1 during the day and also Psychologist or Psychiatrist Behavoural Therapy programme for his OCD. And whatever that cost is will be included in the Statement/EHCP. His school have also recently informed the LA that he needs to travel to/from school in his own taxi as his OCD makes it impossible for him to share a taxi with other children/adults. That will be an additional cost too. Hope that clarifies things.
  8. I think that sports days, and competitiveness is not something that should be done away with. There have been huge implications on the lack of exercise that children undertake each week in school. There have been massive implications of children not learning how to deal with failure and thinking that they are the centre of the universe. Competitiveness is not a bad thing in itself. Being good at sports is something that should be celebrated. There are many autistic children and disabled children that are good at sports. However, that being said, teachers need to realise that not eveyone has that ability or potential - in the same way that some children do not have the academic skills or potential [but no-one suggests doing away with education]. Should parents be allowed to watch sports days. Yes I think so. My own childrens' sports days were organised into 'teams' and all the teams had to complete a circuit of different skills with points being awarded for each event. At the end of the day the total for each team was added up and a winner announced. This seemed to work well because no child could be isolated as 'the one' that caused the team to lose. At secondary level parents were not allowed in for sports days! I think that every child should be encouraged to take part in sports. My own son is not good at ball games, or athletics etc. But now, at age 14, we have found that he is good at Judo - and he likes going. THAT is what we have to keep alive in all our children. To persevere and find their 'niche'. Schools need to find something that every child is good at and make sure that is celebrated. But at the same time all children need to learn how to deal with not being the best. That there are things you might not be good at. Things you might be average at. Afterall in traditional athletics there is only 'one' winner out of a field of maybe 20 of the best athletes from around the world. As a child I have seen other children humiliated by teachers because of their lack of athletic ability, and that is totally unacceptable.
  9. Well done. It is hard work, but worth it. Celebrate your success. Don't believe what the LA or other professionals tell you. Work through the SEN law and EHCP framework methodically [which is often completely the opposite of what parents are told via Local Authorities or other professionals]. It is all about identifying NEED, and demonstrating in paperwork, reports, assessments and lack of progress, that ONLY your parental choice of placement can meet those needs.
  10. That is why the EHCP is very important because it does not have a 'cost' limit. It is about identifying needs [education and health], and what is needed to meet those needs. And what is identified and included in the EHCP MUST be provided and MUST be funded because it is a legally binding document. My son's statement is converting to an EHCP, and we are looking for therapy, support and professional input to be quantified and specified for his OCD, which is on top of his ASD and all the other comorbid diagnoses he has to contend with. AND EHCPs go up to age 25, which is VERY important for adults that continue in education, or for those that don't and need the support and input for them to become as independent as possible, and for them to access work.
  11. You need to ask the local authority for an Education and Health Care Plan [they have replaced Statements]. A PRU is not suitable for a child with diagnoses your daughter has. She should be in an ASD specific school. The Local Authority will not have anything suitable, that is why they have put her in the PRU. There are other schools out there, independent ASD specific schools. But children need a Statement or EHCP to get a place in them, AND the local authority must be unable to find any other suitable placement. So ask for the LA for an EHCP. As your LA for their list of secondary schools [mainstream, maintained, independent and special secondary schools]. You may see a school in that list that is suitable for your daughter. If not you can look on the OFSTED website. There are the SENAD and Priory Group of schools as well. You are looking for an independent school that take pupils with an ASD, and which have SALT and OT employed on site and where they have expertise in working with children with anxiety and school refusal. The LA may refuse to assess, or assess and refuse an EHCP. In both cases you need to appeal that decision. You will probably have to go to an Education Tribunal if seeking an independent school. BUT EHCP's go up to age 25 now and they are a legally binding document on the LA and NHS, so what they contain in terms of teaching, type of school, therapy etc has to be provided regardless of what the LA or NHS has. IE. the LA/NHS has to pay for it.
  12. Yes we wondered about PDA for our son when he was much younger because he struggled with any demands and did not respond well to routine as other children with ASD seemed to. Now it appears it was mainly due to a speech disorder, sensory issues and anxiety rather than PDA And it is the Elizabeth Newson Centre in Nottingham that established this other branch of autism. And I suppose like everyting else, children/adults can have a mixture of this and other diagnoses. Might be something to consider? If staff think Glen is 'controlling', what do they believe he is getting as the reward for this control? Is it a 'predictable outcome'. Sometimes it can be as simple as that. Glen knows that if he does a, b and c that x, y and z will happen. And that might be more anxiety reducing than not knowing what to do or say or what the outcome of any interaction could be.
  13. I'm glad the MRI didn't show up anything. From all the comments made, and my experience with my own son - it sounds like it is a combination of frustration relating to internal or external things, anxiety and problems communicating or being understood - or getting totally overwhelmed - or a combination of all those things. My other thoughts are that when someone [with ASD], child or adult, gets upset/angry etc the support staff or parents etc tend to try to talk to or touch the person. I have watched programmes when children are having meltdowns and parents are hugging and holding them UNTIL they calm down. I always found that doing that made my son worse. What he actually needed was LESS. So no talking, or touching. We learnt to make a statement to him such as "We/I can see that you are very upset/angry/made. You need to got to your room to calm down." I know this may not be something you can do with Glen. But if there is any way that they can get somekind of winding down/calming routine that he can use on a daily basis? Could he be taught to use other things such as a boxing bag to vent is frustration? And staff says he gets aggressive. If there were no adults standing directly in his way, would he trash his room? Is there a predictable build up to his frustration/aggression, or does it happen within seconds. Sometimes the upset/aggression becomes a kind of routine in itself. Ie. Glen gets frustrated. Staff try to intervene. That makes him even worse and aggressive. I read a book some time ago about inappropriate behaviour being a learnt way of communicating. For example a child used to get angry and kick his dad. When he kicked his dad he would gets his dads individed attention. And after the upset his dad would read him a story in bed. So he had learnt that if he kicked his dad he would get attention from his dad and get a story read to him. So is Glen getting something out of his aggressive behaviour without anyone realising it? When Glen gets aggressive what do staff do. Do they try to restrain him?
  14. I think it works in your favour. If the LA cannot name any school that means your school is the ONLY one that can meet your child's needs. The SEND Panel are not stupid. The LA has to go with your choice of school UNLESS they have an alternative that is cheaper and which can meet ALL your childs needs as detailed in your reports/correspondence. I presume you have had detailed reports that specify the kind of school that you have named? I presume this includes things that NO LA mainstream or special school can provide, such as class sizes of less than 8. Weekly SALT/OT delivered flexibly across the week etc. Specialist teaching. Suitable peer group etc. Try not to worry. Your evidence is supposed to convince the SEND Panel. Forget about the LA. They have to prepare their case to convince the SEND Panel. If they haven't done that within the bundle they have submitted, then they only have evidence on the day. If they have not complied with Requests for Changes and Orders made by the SEND Judge, then you can ask that that late evidence is not allowed as the LA have not produced it on time. Do you have any expert witnesses coming with you?
  15. I too hope they get to the bottom of it. Thinking of you and Glen.
  16. If your child meets the criteria for transport to school, then the LA should transport him. What was the decision after the last attempt to transport 4 children in one taxi? I don't know the legality of it all. Maybe speak with someone at network81.org or IPSEA about it. I would advise both you and school [and the other parents] to keep a behaviour diary to note any incidents either in the taxi, or how they cope in school or at home - or if your child refuses to get in the taxi etc. Our LA is trying to force parents who have a motability car to transport their children to/from school instead of them providing a taxi.
  17. We've just had the annual review, and asked for one. Now waiting for the response. It should be exactly the same as a Statement. But medical needs are also included. And if those medical needs impact on education, then they need to be in the educational section [same as SALT input being in part 3 and not just part 6]. We still don't have a decision letter from our Local Authority from the 2014 Annual Review!! So even if we get no response from this review, I can push them for a Decision from 2014, and that should give us the right to appeal the outcome of that Decision. How ridiculous this whole system is.
  18. Your son should have a Statement. He has a number of diagnoses and difficulties that mean he just will not/cannot cope in a mainstream school. But I assume he is around average cognitive ability, but due to problems with processing, short term memory, dyslexia etc he is not working at his ability level? If he has a Statement that details all his needs and states a specific school, then that is where he would go. There are independent schools for children like your son eg. the Priory or SENAD group. BUT your son needs to want to go. And he [and you] have been failed by the system for years. If he is getting into trouble now you might get support from Childrens Services to get him residential BUT into an independent ASD specific school. Definitely NOT a PRU School. But getting Childrens Services involved can take matters out of your hands, depending on how they view the situation. Drink, drugs and stealing is going to get him into trouble, and also get him meeting dangerous people. He is vulnerable. Depending on where you live, I would suggest you phone one of these independent schools and go and visit to see if you can see your son in that school. These schools tend to go up to age 19, and most take boarders 38 or 52 weeks a year. BUT he will need a Statement to get a place - unless childrens services can fast track it somehow? But if you have all these diagnoses on paper, then you have the evidence and it needs to all go into a Statement. I'm just sorry that it has taken so many years for you to get into the position you are now in.
  19. Maybe you need to go back to your GP and ask him those specific questions ie. who are you/have you referred me to; are they going to assess for Aspergers, do they have expertise in working with adults with an autistic spectrum disorder. If they don't, then ask your GP to refer you to someone that does.
  20. I would get a copy of the SEN Code of Practice for Education and Health Care Plans. Read through it as providing support is a graduated process. Ie. the school has to provide a certain level of support in terms of hours or delegated funding BEFORE you can ask for an EHCP. So VERY important to start moving through that process as it can take years. So ask the school what level of SEN support he is currently on. I'm not sure if School Action and School Action Plus still exist? If they do you need to push school to follow that process. Has the school referred him to an Educational Psychologist or Speech and Language Therapist? What is his speech and social communication like? Does he 'chat', or just speak to get things. Does he socialise and play with other kids? If the school has said he needs OT input, what is that for and how will they refer him?
  21. From memory it is some questions and also some play to see how the child responds. I think there is also an interview with parents where again questions are asked and parents can raise concerns. I would not overthink it too much. I remember before our son's assessment I was worried that they would not see what his difficulties were. But they did. It is very important that you don't coach him, or give him information about what he might need to demonstrate. I would simply say that the Doctor will have have a chat with you and with him and that there maybe things for him to play with there. You can also ask at this appointment who else your son would be referred to. He should be seen and assessed by a speech and language therapist because speech and social communication difficulties are part of the spectrum. And difficulties with these areas can impact on learning in school too. If he has any sensory issues, being over or under sensitive, or having problems with modulation of sensory input, then he needs to be seen and assessed by a suitably qualified Occupational therapist. Qualified to diagnose and devise a therapy programme for Sensory processing Disorder. For his Anxiety [and Anxiety is part of being on the spectrum, but some children get an additional diagnosis of Anxiety Disorder, or OCD, or both on top of ASD], he needs to be seen by a Clinical Psychologist [they usually devise programmes], and CAMHS Psychiatrist [who usually prescribe medication - but who may also devise therapy]. My son is on medication. But my position has always been that he MUST be seeing a Clinical Psychologist or CAMHS professional to devise a programme to be delivered at home and school AS WELL. Otherwise you are simply medicating a child to sedate them and they are not learning how to cope with and overcome their anxiety or OCD. Let us know how the assessment goes.
  22. I'm not 100% sure if they would diagnose just from that assessment. ASD is about a triad of impairments, which affect your child to a clinical degree. We were first referred to a speech therapist by my son's primary school. She saw my son and played with him and told us to expect an ASD diagnosis just from his speech and social interaction. But she referred onto the communication clinic - which involved the Clinical Psychologist and Developmental Paediatrician. And a final diagnosis was 18 months later. So we would have appreciated a diagnosis earlier. If a child is more severely autistic from birth, then a diagnosis is often made much earlier. After my son's diagnosis he was referred to an Occupational Therapist. After 3 years we paid for a private assessment and he received a further diagnosis of Sensory Processing Disorder and Dyspraxia. Then we took him for a private assessment and he was diagnosed with around average cognitive ability, but with severe dyslexia and dyscalculia and difficulties with working and short term memory. So there could be other things as well as an ASD. Do you think he is on the spectrum?
  23. Here is a link to a post about an alternative delivery of education. Thought it might be of interest http://www.asd-forum.org.uk/forum/index.php?/topic/30658-hello-and-how-my-son-is-educated/
  24. Very interesting. I know it is possible. But you are quite a "rare breed" to have achieved it. And I have been wondering myself how 'flexible' my own son's learning could potentially be as he gets older. He is currently at an independent special school and therefore misses out on any potential local friendships. Academically he might at some stage be able to access a mainstream lesson in specific subject areas. But very encouraging to hear what you have achieved. All too often we have to exchange one system for another when no system is compatible in its entirety.
  25. Are you sure the meeting afterwards is to give a diagnosis? And what kind of Consultant are they. My son was seen by a Speech Therapist, a Clinical Psychologist and a Developmental Paediatrician. We had about 3 appointments/assessments over a period of 18 months. Then we got the diagnosis. You can always phone the department and ask them who your son will be seen by and has he been referred to any other professional for assessment or for them to meet with you both.
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