bed32
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Posts posted by bed32
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For us the Ed Psych report was a revelation - we already had a diagnosis but that was little more than a word on a paper. All ASD children are different and just having the label ASD does not give that much idea of the particular areas of difficulty.
Our son is almost 11 so in Yr 6. He has just transferred this term from mainstream primary to a specialist (residential) AS school. Very early days yet but so far this signs are good. The last 18 months of his education have been so disrupted that it will take time for him to settle back into a routine and begin making progress again. We really don't know what he is going to be able to achieve, he has the ability to do very well but there is a lot to do to get over his rigid though patterns and fear of failure.
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I think our situation is similar in some ways though perhaps our son does not need quite as much attention. He is on the highest rate care DLA and often requires attention in the night, but not enough to require one of us to stay up. It usually only results in an hour or so lost sleep, Even so it is hard to see how both parents can work bringing up an ASD child unless they have a lot of support around them or can afford to pay for help. Having him in residential in some ways makes life harder because there is still the same level of care required when he is home, so it is still very difficult to have a job that fits round him, income is reduced.
I am not sure what Social services can reasonably do though. Round here I don't think they provide any care into the home, concentrating on respite, fostering, day care and so on. It is hard to see how they could afford to provide sufficient care in the home to replace the parent as the primary care provider - they seem to prefer a residential setting when that is needed.
As to whether they have an obligation to do so, that is not clear to me. They have an obligation to provide certain services but it is not as clear cut where the boundaries are as it is with Education. This issue also exists with the care for elderly - I think with the aging population the government is going to have to reassess provision of care to allow more to be do in the home, but that is not likely to happen soon enough to us to benefit.
Having an child with ASD has a detrimental effect on all aspects of your life as a family, it seems to dominate most areas of life - financial, friendships, relationships and leisure.
The question about provision within an independent environment is interesting - we are just beginning to wonder about this In the independent environment there is much less specialisation of the non-academic therapy so it raises the question of what to do if they are not providing everything he needs. In theory they still need to provide a tailored solution to fit all his needs - but I can't see how you can go to tribunal saying a specialist school you fought for is still not meeting his needs and asking for additional support. That seems like a very high risk strategy
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I think it is fairly common to experience a sudden change in an ASD child, particularly at school. School life takes the form of a number of steps with children being required to mature and change how they work pretty much every year. ASD children can't always keep up, particularly in an environment that does not meet their specific needs. There comes a time when it is obvious (to themselves) that they are struggling and then things can fall apart very quickly.
In UK it is common for this to happen around Yr 3-4 with the transition to Juniors (the other common age being Yr 7-8, and then Yr 10).
From our experience we were aware of issues from an early age but were really unaware of the severity until age 7 or so. He is extremely bright and when he started school he was top of the class in everything, but could not cope when the skills required moved from the factual to the more complex issues of imagination, creativity and inference.
While I am not an expert in Autism, I don't think it is normal to see "Regression" with High Functioning children, I associate that with more severe forms. However many ASD children (our son included) hate failure and so resist being challenged, it sounds as if your daughter is experiencing that. The good news is that this can be addressed. Getting her the correct support and environment can go a long way to reversing the decline and there is no reason why she should not return to above average performance.
We can't of course know whether it is AS or something else. Many things can lead to the sort of change in behaviour you are seeing including ASD, dyslexia, bullying, change in home circumstances.
You certainly need to get to the bottom of what is going on. If you can afford it you could consider getting a private Ed Psych assessment as this will pick up most things and give you a much better understanding of her (cost about £1500-£2000). Otherwise you need to pursue the NHS route but that could be very frustrating. You may struggle to get her referred to CAMHS at this stage without more evidence, and even then it will be slow. In our experience even though we did get a formal diagnosis through CAMHS that was of little practical use - we needed a much more in depth analysis of his strengths and weaknesses before really knowing how best to help him.
You should certainly be entering into a dialogue with school, get her only School Action Plus to see what support they can provide. Make sure she has IEPs that have goals that match your concerns. Even if that doesn't do much good now it is an important part of the process of getting the help she may need
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As far as I know there is no help available to support you looking after a child in your own home other than carers allowance. All SS can do is to provide care for him in other settings, be that respite, foster or residential.
It does put you in a difficult position if you really need 24 care - i.e. waking care round the clock then eventually it does seem to be an option between full time care or one of the parents staying at home to provide the backbone to the care. There are few jobs that will fit around providing that level of support to a needy child.
Our SS have been totally useless - I am not sure they have even bothered to complete the assessment and we are not expecting anything more from them.
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The top priority must be getting him through GCSEs successfully. If I read your posts correctly you have asked for him to retake one year, but in fact he is going to be 2 years behind because of the need to fit in with the GCSE syllabus.
It sounds as if you have unwittingly ended up in a difficult situation - from the options you mention it is difficult to see how any can get him to GCSE by the end of next year as you had hoped. The only way that might be possible would be to go to a more specialised teaching environment (a specialist ASD school) who have much higher staffing ratios and are better experienced at tailoring the curriculum around the individual - but at a school like that you would only be looking at doing 5-6 GCSEs at most. The other positive thing about that sort of school would be it might make the A level situation easier. If he moves now to a specialist environment that will help them up to A level then you stand more chance of him being allowed to stay there past 19 (the age at which LAs no longer have to maintain a statement). However from what you say that does not really seem right for your son.
Have you discussed the issue in detail with the current head? Is it possible to get him back into Yr 10 but provide additional work to cover the areas he has missed? Given he has already done Yr9 and some of Yr 10 he should be able to catch up in the remaining 18 months before GCSEs if he has the motivation and he can get the support.
Can you do anything to make the current placement work better? Is moving closer a possiblity?
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We have been told that it is "pro-rata" so if he is with you half the time then you get half the money, but we haven't got the official figures.
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Oh dear - I have a lot of sympathy for all of you. An ASD child (let alone two) puts a great strain on any family.
In any family it is important to look after the needs of all members, but as most of us know an AS child, it is the needs of that one child that dominates. Our son sounds similar and for the last few years almost everything seems to revolve around him and meeting his needs.
That is highlighted in your own post - you are fed up with your husband not because he is having an affair - or even because of how he is treating you - but because of how he is interacting with your son.
Looking into my own family I see individuals all of whom have needs, and have a right to have those needs met. The stress of looking after an AS child creates needs that should be met, and in some ways it is even harder for the husband than the wife - all the sympathy that is going tends to be aimed at the wife (even though there can be very little of that) and all the husband hears is how much harder it is for the wide.
You can't really blame anyone for the breakdown of relationships in those circumstances, everything is conspiring against the couple and it seems a miracle if any do survive.
I am not sure that you actually want advice, and I am sure I am not qualified to give it anyway, but rather than acting in anger why not at least sit down and have a frank discussion? The only thing I will say is try to look at the husband as being vulnerable too - almost as if he also has AS. You have clearly learned to make allowances for your sons' emotional difficulties because you know he can't help it. Perhaps your husband is in fact in no more control of his emotions than your son. In acting the way he does it may be that he is not really in control of his actions and he needs help and support too.
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Getting the necessary assessments can be tricky - you are not going to get any significant help that is not backed up with an expert assessment whether NHS or private. The LA are in a bit of a difficult position as they also rely on the NHS to make the diagnosis.
The parents can try going through their GP to get an assessment from NHS OT or they can try to get help from the voluntary sector (e.g. NAS for ASD issues).
Also they can try an organisation like SOSSEN - they will give a lot of help for free and I think they have some way of getting free assessments in some cases.
As far as what else to do - the parents could try having a meeting with the LA SEN department - saying that they are disappointed and pointing out the issues with the process (make sure they have read the SEN Code of Practice). If they make it clear that they intend to appeal then they may get some action.
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Strange as it may sound, our (civil) legal system is not there to deliver justice - its only concern is money. You don't get extra compensation just because you've been badly treated. So go to tribunal if you can prove a financial loss. If you're motivation is not letting them get away with it then you would be better just walking away. The IT jobs environment seems pretty buoyant so take a break then find yourself a job with a better employer
While you need to take proper legal advice I think you might struggle to claim constructive dismissal - it would have been easier if you had just got a doctor to sign you off sick as that would have put the onus on the employer to resolve things.
What a lawyer will tell you is that you need to go through the company's grievance procedure before you go to tribunal - that is a bit of a waste of time once you have left the company but you will need to go though it.
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I would recommend you to think very carefully before you go to tribunal - it can be a very stressful process even if you win in the end (which is by no means certain as tribunals make some very odd decisions). Win or lose a tribunal process will be very stressful and may make it harder to get over the experience.
What are you wanting to achieve by going to the tribunal, and on what would you base the claim?
If you want to go the legal route then you will need to look for a solicitor who specializes in disability discrimination, but any solicitor will cost a lot of money and there is no guarantee that you will get it back at the end. Tribunals are designed so that you can represent yourself, but in practice that can be difficult in a case like this as you need advice as to what points are relevant to the case.
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There is plenty of compelling and scientific evidence that diet can influence behaviour in children, and presumably adults as well. The problem is that everyone is different so what works for one child may not work for another.
I see no problem with eliminating MSG, aspartame and many artificial colouring from the diet - there is no need for them. Some children do have a dairy intolerance so it might be worth removing that for a short period of time to see if it makes improvements.
The whole "CFGF Autism Diet" is a different thing. It is much harder to asses that objectively - some people say it works very well and it is hard to discount their experiences, but people talk about results in 6, 12, or even 24 months and over that timescale all children will develop anyway - I can see no way that you can say that the changes are linked to that particular dietary change
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I would be very cautious about a General Special Needs School - particularly at primary level. An Autistic pupil has very specific needs and requires specialist Autism teaching.
You may be able to transfer to a mainstream school with an AS support unit, or other special provision, but even then the sort of pupils in the unit are likely to be much more severe than your daughter.
When we were in a similar position (in Yr 4), with no appropriate ASD specific teaching close enough - we chose to go down the route of getting the provision he needed provided in mainstream. This was hard work and took some time (plus the cost of experts). We got independent reports from SALT, OT and Psychologist to recommend what support he needed in his current school - then went to the tribunal and got almost everything. (almost 2:1 support, specialist SALT, Sensory Integration, OT, CBT...).
To be honest this was not a great success but provided just about enough support for him to continue in mainstream for long enough (or until he was old enough) to choose a more appropriate long term setting - he is now in Yr 6 and is about to start at a residential AS specific school.
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I think most people on this site will have experience of boys with ASD - I am not sure of girls present the same way.
It sounds as if your daughter will need to move to a special school at some point - children that struggle in Mainstream as early as this are highly unlikely to manage in mainstream up to GCSE. I have never heard of anyone who sent their child to an Autism school and regretted it - most say it transforms the child.
So the issue may well be not whether to send her to an Autism school but when (and to which school). In general many of the special schools at primary level are geared to more severe cases - with the more AS focussed schools not beginning to take children until Yr 4 or 5.
But it is difficult to talk in the abstract - the best approach is to look around at any possible schools in your neighbourhood and see if any look like appropriate places for her. After visiting a couple you should soon get a feel for what the offer and get a better idea of whether you think they can provide the right environment
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I really don't think ethnicity comes into it.
In a mainstream environment what a child needs is a tolerant and understanding peer group - that is likely to be more linked to the social background / "Class" of the peers rather than ethnicity. With middle class / professional environments probably being more tolerant and accepting than others.
I think AS children will also usually benefit from being in a diverse environment in the sense of having a wide variety of different interests and backgrounds. That means there is less pressure to conform to any one stereotype.
I do think that it could be difficult for an AS child to be in an environment that was dominated by those from a different ethnic background.
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I think you can only appeal on what it says in the statement now. So if Part 4 names the school/college you want there is nothing to appeal. The LA always have the right to amend a statement and I don't think there is any ruling a tribunal can make that would prevent them from doing so next year.
As Sally says it is highly unlikely that the LA will change his placement once he has started a 2 year course - were they to do so you would have the right of appeal.
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I am very sorry for you and your family, I think a lot of us must dread this sort of thing happening.
I think you need legal advice from someone who is an expert in ASD.- I would contact people like the NAS, the Equality Support Service.
In terms of what to do for him, can you talk it through with the school? If they are good they should be able to provide specialist advice and help. Without knowing the person it is very hard to say more - he is clearly going to be very anxious now and that is going to dominate his life for the next few weeks. The best you can do is to try to reassure him and reduce his anxiety levels - then try to get life back to something like normal.
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I have an article somewhere about a concentration of kids with AS in Eindhoven which has a very large number of people working in electronics and software.
One parent thinks that kids with AS are more common in medium sized towns in the south of England, and are rarer in rural areas largely populated by people who were living there 100 years ago; some economically deprived parts of the north of England; in and around the Welsh valleys; and inner London.
That would fit - that maps roughly on where the more technical jobs are
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Does the school have much experience of AS children? Many mainstream schools don't and so you may need to begin the process of educating the school in the needs of AS children - it is possible that as they grow more aware of his issues they will become more accommodating.
I really think you need to consider applying for a statement now. If he is beginning to have problems now in year 8 it is likely that things will only get worse as he gets closer to GCSE - you don't want to get to the position of things breaking down in Yr 9 or 10 and then wasting months or years going through the process,
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I would expect there to be significant regional distributions. There is plenty of evidence that the personalities of the parents are an indicator of the likelihood of a child having AS. So areas that tend to attract in certain types of parents will have a higher rates of AS.
The suggestion is that "technical" parents (engineers, IT, web and so on) are more likely to have AS children (Baron-Cohen certainly believes this to be the case) and that would imply a concentration of AS children in areas with a concentration of that sort of job. In US certainly there appears to be a high concentration of AS in Silicon valley.
The UK does not have as localised industries, but you might still expect a higher concentration around say the Thames Valley than in the areas with a more traditional industrial background (if there are any any more).
But also different areas are better at diagnosing AS - so areas which appear to have fewer AS children may simply be less good at diagnosing them at the primary level.
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The way this is usually done is through a Statement. One of the purposes of the statement is to define modifications to the national curriculum and that can include missing certain subjects.
That said I don't see why doing Spanish should be a particular problem for an AS child - it is possible that there is some other underlying cause of his anxiety so it may not be that just getting him out of Spanish is the best solution - it may be there are other adjustments the school ought to be making.
I think the school may be in a difficult position because without him having a statement they will have very limited discretion in dealing with him. Almost any child with the diagnosis is going to need additional help within a mainstream environment - that normally comes through a statement. It is probably worth your while applying for statutory assessment on the basis that he clearly has additional needs and they are not being fully met in his environment. Please ignore the people who say "you won't get a statement because of X" - we have all heard that (for many different values of X) yet most of us have got statements for our children. If his disability is causing him to miss lessons, or a whole subject, then he needs additional help.
Yes - you and your son do have rights under the equality act that may have a bearing on this but it is probably not the best way to tackle the issue as the disability tribunals have much less power than the sen tribunals.
Also consider putting a little bit of pressure on the school - you could consider making a complaint about the detention and any other sanctions, making the point that you think they are a result of his disability. It is unlikely to do much good but it does start building up a trail of evidence that might be useful later
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Carers allowance does not take into account partner's income
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It is likely that the behavioural issues you are seeing are a sign that he has other fundamental needs that are not being met - that at least is the way with many ASD children but of course I don't know your son.
If that is the case then punishments / exclusion on their own will only make things worse. You should consider working with 2 strategies in parallel. Firstly trying to eliminate stress from his life as much as possible (difficult) and secondly teaching him to recognise his feelings and respond to them in a more appropriate way. He needs to have strategies in place to cope with the various pressure points. Once he has such strategies in place you can consider using punishments for failing to follow them.
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With continued apologies for hesitation, repetition and most of all deviation
I accept what you are saying Sally, I was rather starting from the assumption that the parent's choice of placement is genuinely the right one for the child and so by definition can meet all his needs. It seems very strange to think of going to tribunal for a school that has not explicitly stated they can meet the child's needs. I know it is a difficult area, but parents really need to take responsibility for understanding their child's real needs and matching that against the best possible provision in their area. No one is going to do that for you
The problem is parents tend to start off with the assumption that somehow the LA has the child's best interests at heart, and should know best as that is their job. By the time they find out the truth (that all the LA wants to do is save money and effort) they have, at least, wasted months and may end up being tricked/bullied into inadequate or inappropriate provision.The non AS specific schools we considered were all recommended by professionals who had assessed our son in depth (e.g. our expert witness and solicitor) and who had experience of getting AS children into those schools through tribunal - so it really is not as simple as saying only an ASD school can meet the needs. In fact for one of them our solicitor was pretty sure we could win on cost, as their fees were less than the cost to the LA of all the dedicated provision they have to put into his current mainstream setting. That said I don't really think the argument on cost is a good one to make.
One of the oddities of the tribunal system is that the cost of the placement doesn't usually come into it. If you are suggesting a placement that can meet his needs, and the LA is suggesting one that you can prove cannot, then the tribunal should go with your placement irrespective of the cost - so within reason the cost of the provision does not matter.
Where cost and the cheaper option can come into it is when negotiating with the LA. If they think you can win a more expensive placement in front of the tribunal then they may be more willing to give you the cheaper option without the appeal. Reading this forum you could get the idea that you only get into these schools via tribunal appeal. In fact talking to the schools themselves they tend to say that up to half the pupils come without tribunal, so it does happen if you present your case well.
But all I am really trying to do is to encourage the OP to consider all options rather than assuming that specialist ASD provision is always the best solution. Have a look at schools in the area that characterise themselves as SALT or Dyslexia but that also take mild AS and see if any of those might suit.
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Please excuse a bit of thread drift - but I think it is a useful discussion in a wider context.
I don't know about the situation in Yorkshire, but round here (SE) there are a lot of good non-ASD options that have been recommended to us by experts who have assessed our son. The benefit of these schools is that they pupils tend to be of higher cognative ability than those in most AS/ASD schools, and provide a better role models (in the social sense) than in an ASD school.
Most of these have much lower therapeutic provision and staffing levels, and so are much cheaper (the cheapest was about 10% of the cost of the most expensive ASD schools) and so the LA is likely to be very sympathetic to that sort of saving!
We are in the process now of selecting the school for our son who is now in Yr 6 and we have looked at >30 schools, some no more than 30 minutes discussion over the phone but some involving several visits with our son.
In our experience what makes the AS schools stand out is (a) The level of therapy, (
the overall level of support (e.g. waking night time staff in boarding provision) © ASD focused work such as "Life Skills".In our case the need for the therapy (particularly OT/SI) is the overriding factor that means AS specific provision is necessary - but if that weren't the case we would be looking much more at the Dyslexia-type schools (many of which also cater for mild AS) as they tend to provide a "better" academic environment.
You also tend to find that the AS schools tend to focus more on residential provision - because they can work much better with AS/ASD difficulties in the context of a 24 hr curriculum - I often think that pupils who attend those schools as day pupils are almost missing the point and certainly can't get the whole benefit.
Pretty much all my understanding about AS is with children like my son. Those who begin to struggle in mainstream around Y4-5 and for whom a mainstream placement is a total non starter. For these children I am sure the specialise AS schools represent the best provision but at the same time I recognise their disadvantages and wish that we had other options available. If a child has survived to Y10 then he is clearly a lot less impaired in some aspects than most children in the AS schools so I would automatically assume the same provision is appropriate.
The best thing is to talk to as wide a range of schools as possible - everything from residential ASD to small mainstream - to see which makes most sense. Any school will be more than happy to discuss your particular issues and advise as to whether they can help. Most are also able to give you a much better overview of SEN provision in the area than the LA and will be happy to suggest schools they think are more appropriate if they are not the right placement
EBacc - triple science and foreign languages
in Education
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Does he have a statement? or on SAP?
I would say that most people who are capable of getting A/A* in Maths ought to be able to get a C in French if they are taught correctly. There is a good correlation between maths ability and some linguistic skills and many AS children also have good memories. You can approach a foreign language either as a science or an arts subject, and I would expect the scientific approach to suit AS children.
Sounds as if some negotiation is required, perhaps they can arrange some additional hep in the French. As he has a disability the school has a responsibility to make reasonable adjustments but clearly they can't arrange the whole school timetable around a single pupil. His parents should ask (as they probably have) that they waive the predicted grade standard in his case (sounds as if they have done that) - or perhaps they can come up with some other solution to the timetabling problem
They can quote the equality act but that is really a bit of a bluff - it is difficult to say what view a disability tribunal would take, and anyway by the time they got there it would probably be too late.
It would also help if the parent