A and A
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Posts posted by A and A
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Hi there we are 2 days away from hearing whether the LA agree to a statement and we now have problems with our landlord as we haven't had any heating for 2 months and he has made no effort to sort it out, so we are looking to move house asap, but most of the suitable available houses are in another county. If we move to another county how does this affect the statement process and if we have to appeal or finalise the statement where do we stand.
A and A
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Hi there we have a ds aged 3 who has been diagnosed with asd last october, he sometimes takes a while to go to sleep and we frequently have disturbed nights with him and it takes him about an hour sometimes longer to go back to sleep, we have had chats with the specialist health visitor and she has said that when we see the paediatrician in 2 weeks time to discuss the use of melatonin with him as he is happy to prescribe this. we would like advice from parents who have used this and how effective is it and what are the doses used.
A and A
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I know lots of families who've sent off for the test. We never did, (I couldn't get a urine sample) just started the diet.I like Paul Shattock - you can find some of his posts on Adam Feinstein's online conference. He goes out of his way to answer questions and the conference he does in Newcastle is both affordable and informative. I used Airmiles to get there one year and have always meant to go back.
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I know lots of families who've sent off for the test. We never did, (I couldn't get a urine sample) just started the diet.I like Paul Shattock - you can find some of his posts on Adam Feinstein's online conference. He goes out of his way to answer questions and the conference he does in Newcastle is both affordable and informative. I used Airmiles to get there one year and have always meant to go back.
Hi there thanks for the reply, the diet you started how did you decide what foods did you have any help in sorting out what foods were ok. Liam is currently on a dairy free diet and reduced gluten intake would it still be worth doing the test.
A and A
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Hi i looked at this before but didn,t have time to reply. In a nutshell they analyse urine to see if you have a problem with gluten and casein. there is a thought that in some people with autism gluten and casein are processed by the body diferently and turn into morphine like substances which give the child a high (like morphine ) followed by a sudden crash and a craving for more gluten/ morphine. This is it in very basic terms. ASD people also tend to have a problem with aspartame and monosodium glutamate as well. A lot of children with ASD have a history of severe colic and/or lactose intolerance both my boys included.I have found them to be helpful at Sunderland, Paul Shattock is very approachable. The diet doesn,t work for everyone and is strict but once you get into the swing of things not so bad. We had Marcus urine analsed in 2007 and he was found to have a problem with gluten but we gave up both anyway, i did notice a change in him but unfortunately he spends a lot of time at his grandparents and they wouldn,t stick to the diet so he would come back from them high and it would take a few days to get him back to normal and then he would go to them again. Once we stopped the diet his bahaviour rapidly deteriorated and we had a really bad year but he wouldn,t go back on the diet because his Nanna said it was stupid and he was missing out on nice food
.I recently spoke to Paul again as my youngest boy was severely lactose intolerant as a baby and toddler and still has incedents of this and bouts of eczema he spent a long time explaining why he thought Piers had a problem with casein instead of lactose and discussed family history. Following this discussion i had food intolerance testing as he sugggested i probably had a problem too and was found to be intolerant to gluten, eggs and dairy products. DH isn,t keen to try the diet with Piers so for the moment we are holding off but may be something we will try in the future. The test costs £60 and includes you sending a urine sample and a detailed medical and family history. Hope this helps.
Hi there that helps alot thank you, we are keen to get Liam tested do you have any contact details for sunderland research centre and Paul Shattock.
Thanks Anna and Anthony
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Hi we have a 3 year old son diagnosed with asd and I have been reading other parents posts and the sunderland research unit is mentioned frequently we would like to hear from other families who have been in contact with this unit about what they do.
A and A
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Hi there we have a 3 year old son who was diagnosed with asd in october 09 and he is due to start a specialised nursery for children with a range of disabilities. He is going from 9am till 3pm one day a week so will need to take a pack lunch with him,can anyone give me any ideas of what to put in his pack lunch that is gluten and dairy free.
A and A
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It depends who assessed and what the purpose of that assessment was.For example my son was assessed by the EP and SALT (on the education side, as he was in school). And they produced further reports when he was being assessed for a Statement.
He was also assessed by the Developmental Paediatrician, the Clinical Psychologist purely for a diagnosis, and they did not look into how the dx affected him personally or give any advice. They just gave a dx and a leaflet about the Parent Partnership.
SALT, OT and Physio (if needed) ARE all educational needs, incase you are told otherwise.
It is important to read the CoP because, as you have already found, those in the system either deliberately give false information to parents, or they don't know the system themselves. So you will end up like a PA/Case worker for your own child, but it is essential to ensure that everything is done as it should be.
You will also be asked for your views. There is a very long form that you fill in to give all the background information and also a current picture of how your child is and what you feel their diffiuclties are.
Hi there Sally, Liam was assessed at the child development centre to establish a diagnosis which was given as Liam being a child with ASD, Liam was assessed for 3 weeks in a specialised nursery by the following people, Speech and Language therapist, Occupational therapist, physiotherapist, psychologist,educational psychologist, health vistitor, community paediatrician, nursery nurse. The staff at the cdc have been brilliant and have offered lots of support and we are to have further appointments with the paediatrician and we also have regular visits and conatct with the specialist health visitor for children with special needs.
A and A
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There are many people who were failed by the system who do not turn to crime.However it is well documented that the proportion of individuals within the prison system who have specific learning difficulties or mental health problems is much higher than would be expected.Unfortunately the issue is much more complex than having an awareness of right and wrong.Yes very sad it is too, that's why more money needs to go to education and SEN to prevent the next gen going that way. The majority in prison are still your everyday person who decided to take what they thought was an easy option rather than work their way through their problems. Most of them are let out then they re offend. Wasted money! Better spent educating and spotting those with problems in their school years than on those that are in the prison system who are beyond help or dont want to be helped.
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Are we to expect whole new list of appointments for the assessment or are they more likely to contact the professionals that have already assessed him. Having just gone through and MDT it would seem silly to have to go through all that again.
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It maybe though that criminal had dyslexia or a special need that wasnt met in his education though led him onto a road of criminality or a addict who diverted to drugs to numb out the pain he suffered because some need wasnt met in school or his parents required support, many prisoners and young offenders are the bi product of insuffient support when they were younger, many young offenders have undx dyslexia and even some have undx Autism there is many reasons why people end up a criminal but the crux of it is because the system failed them somewhere along the line.JsMumxxxxx
Yes that may be true in some cases, but most of them would have known difference between right and wrong. I'm sure there are many, many more people who have been failed by the system and not become criminals or addicts.
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Yes! result, the LEA have agreed to do an assessment. No need to appeal. A step in the right direction at last, now will look up how long they have to do the assessment.
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Hi Nicky, and good luck with your appeal, it looks like we may have to go down the appeal route very soon. Is good to know that we can request the appeal date to be brought forward.
The whole precess is way too long, and too easy for the LEA to drag it out to it's maximum. We should be able sue LEA's who drag out the process and then throw in the towel at the last minute. What can we do to stop them taking all the time their allowed when they know they cant win?
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It is infuriating, and makes the future very uncertain. We have to deal with all the red tape and bureaucracy, and add to that LEA''s that bend rules.
It makes me very angry when we throw money at people like criminals, addicts and the like. Giving them second, third and fourth chances all at the tax payers expense, while we with our son who is as innocent as a child can be, have to fight for every scrap we can get!
Wonder if they can refuse us for a 3rd time?
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Well how very gracious of them!! (insert sarcastic smilie here). I hope they don't keep you waitng long for a decision.Quicker just to appeal the original refusal.
K x
The SEN officer was trying to tell me that some how our second request for assessment was part of the first and that we had gone over time to appeal and we would have to wait 6 months before we could again.
I think when we started demanding reasons why it was refused, they realised we weren't going to give up that easily.
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Hi.I am wondering is a Statement not needed in order to obtain a placement at the special school and is it ASD specialist provision ?
I think if you are in any doubt it would be worth pushing for the Statutary Assessment.Unless the special school is named on a Statement there is no gaurentee that a place willl be available when the time comes.Also even if there is a place it may not provide the specialist ASD input that would be ensured by a Statement.
I do not have specific experience regarding Statements for children as young as three.However if you are hoping to obtain funding for a specific programme via a Statement it may well be expensive for the LEA to fund if it is documented in a Statement.I wonder if the LEA are hoping to delay the Statutary Assessment in order to delay putting early intervention in place.
It may well be worth obtaining some advice from NAS too.
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=143&a=9995
The number is on this page.IPSEA are excellent regarding issues to do with the actual Statement.However funding for early intervention is a specialist area.NAS may well be able to offer some advice regarding options for early intervention and how to go about requesting support is put in place.
Karen.
It's not an ASD specialist provision, and we do not not a need a statement for it. It's just the nursery part of the school that is for SEN. We have spoken to the head of the nursery and she said as it was likely he would be accepted and once he was attending they apply for an assessment as well. It's quite possible they are delaying it, because of the early intervention side of things.
Also Anna spoke on the phone to SEN officer before i did, and she mentioned the paediatricians support and she was told that he was new and didn't know how the LEA works. Sounds like they may a policy to refuse everything until threat of appeal.
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Someone from my course said there is also a programme on Autism on More4 I believe on Saturday,I will try confirm this,or someone else may correct me if I am wrong.would it be this one??
7:25pm on More4
125 mins
This double Emmy-winning film, part of the More4 Arts season, follows one woman's pledge to lead a group of autistic children to write, rehearse and perform their own full-length musical.
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Hi.I am just wondering.I think you have an ASD diagnosis that has been given in the last few weeks.Did you have the ASD diagnosis at the time the last request to conduct a Statutary Assessment was considered by the panel and was the information submitted to panel ?
This would be very significant evidence.
It may be that this far the nursery have not had the experience to submit the sort of information that the LA needs as evidence.
If you appeal do contact the individual who has recently given the ASD dx and request that they also contact the LA on your behalf.The paediatrician or professional that coordinated the diagnostic panel or MDT will have experience of supporting parents in your situation.Please do enlist their support.
I would think that a meeting should be held soon to follow up on the ASD diagnosis and to offer a package of support that should include a plan regarding options for educational placement in future.Please do voice your concern that the Stsatutary Assessment has been declined at that meeting too.
Have you started to think about school options and do you know whether you would need a Statement for any specialist local provision?
I am just wondering how much time you have.
Karen.
Hi Karen, when we told the peadiatrician we were requesting an assessment he wrote a letter to LEA, he said he would support us on this. Obviously that didnt sway the panel either.
The LEA have put our son forward for a meeting to go to a special school, we have accepted this, but have said that will not be enough to gain him the progress we think can make before he reaches school age. We are also looking at other possible schools in our area, there is a school specifically for autistic children not far away, but it's in another county. We literally live on the border of two counties. Our youngest goes to nursery in one county and the oldest goes to school in another.
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I have spoken to our LEA's SEN officer this afternoon and they have decided to let our sons case be seen by the panel again tomorrow, and the next letter they send will have the rights to appeal on it.
Just to fill you in on the story. We was first refused begining of july and was told they would aramge an ed psyc to assess him. The ed psyc saw him at nursery on sep 9 th. We then asked how long before the report would be ready and was told in two weeks. So we then decided to request an assessment again, thinking this report would be ready well in time for the panel meeting. Plus we had some new reports from other professionals.
During this period we had MDT assessments and a diagnosis of ASD. Once the ed psyc had found about the MDT she decided not to finish her report until after the final MDT meeting. So the report was not ready until 2 days after the panel meeting. We were not pleased at this. but still thought we had enough evidence for an assessment. This request was tuned down again last week.
Also i've just spoken a lady from ipsea and she had found out that if you are refused an assessment you can request another assessment a month after and every month after each refusal. The six month wait is only if you've had an assessment that was refused.
I can only think the LEA thought we would accept the dicision and not kick up a fuss.
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What age is he?he was 3 on Halloween, we already had several reports saying significant global delay, and a couple of days before his birthday we got diagnosis of ASD. We should get the full reports from MDT over the next couple of weeks.
The sen code of practice says "The LEA will then assess the evidence and decide whether the child's difficulties or developmental delays are likely to be addressed only though a statement of special educational needs. Where a child's educational needs appear to be sufficiently severe or complex as to require attention for much of the child's school life, or that the evidence points to the need for specialist early intervention that cannot be provided in the current setting, then the LEA is likely to conclude that an assessment is necessary.”
Considering our son is yet to speak, has no other way of really communicating. He does not play with any toys or seek interaction with anybody else unless it involves food or drink. All the reports we have say that.
I don't think it can get much more severe and complex than that, and we know it's definitely going to affect all his school life. So what what more do the LEA want?
But do we still have a right to appeal this second time?
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It sounds like they did not treat the second request as an official one.One more question (sorry!) Going back to the first time you made the request, did they follow the correct procedure then? You should have been told in writing that the LA had 6 weeks to consider your request for a statutory assessment, and that you had 29 days to submit your own reports. When they refused at the end of the 6 weeks, you should have had a decision letter telling you of your right to appeal to the tribunal.
K x
My mistake, they send us a the second time, and yes they did follow procedure first time.
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OK - second time you requested it, did the LA follow the correct procedures i.e. did they send you a letter saying they would consider the request and give you a decision after 6 weeks?K x
No i don't think they did, they just sent the form to fill out for the request. We had to phoned them to make sure they were actually reviewing it and were told the date of the panel meeting.
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Hi A and AI just looked back through your topics to get the background to your situation because this sounds a bit weird and I'm wondering if the official process was actually started at all.
Did you, or the nursery, ask the LEA officially in writing for a section 323 Statutory Assessment for your son?
K x
We the parents initially requested an assessment towards the end of may this year, and it got turned. WE weren't surprised as at that time we didn't have as much evidence. Now he has been assessed by several, so we requested an assessment again and it was refused again by the panel last week. It was said he didnt meet the criteria the first time, and second time it just said decision unchanged.
Do you have a child who is passive or attempts to
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There didn't seem to be an appropriate option for our son. As he is extremely passive, he will rarely do anything unless he is guided by someone else.
Has never shown any aggressive or violent behavior. Although in the past he has hit himself on the head or banged his head on the wall. Thankfully he didn't do it often and i haven't seen him do that for long while.
He is only 3, and we hope he will always keep his calm and easy going personality but would love him to show more interest in things and other people!