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cmuir

SCHOOL SAY SON IS DOING WELL - HOME LIFE DIFFICULT

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Hi

 

I'm fast approaching my witsend with this one ... My son has been in mainstream school for a full 3 years now. He's in P4 and has 20 hours LA support. School are saying he's doing well, but I don't believe he is. For one thing, he's bring all his anxieties home and vents - his behaviour can be extreme. CAMHS have recognised this and had recommended/prescribed Risperidone, which he's refusing to take. Baseline medical tests such as blood tests, height, weight, blood pressure have been impossible to obtain (after 4 attempts) and so that's not a safe option. CAMHS have detailed in a report that he's extremely anxious and talks a lot about peers, feeling different, not fitting in, etc. The school are aware of this. Yet, still say (despite having witnessed on occasions first hand how challenging he can be) that he's doing well. I made a placing request to an autism specific school which was turned down as it was deemed to be an unsuitable placement. Problem is that his Ed Psych spoke to Chairman of the PAG group who make placing request decisions) day before meeting and was quote 'quite clear that R is best placed within a mainstream school'. There are lots of issues/long term worries. For one thing, they're gradually reducing support, yet his behaviour at home is worsening. Feel like I've hit a brick wall. Asked for a new EP and that's been refused as there's no statutory obligation to meet that request. EP hasn't assessed R properly - assessments either haven't been carried out, are incomplete, or have apparently been carried out using wrong diagnostic tools (as advised by ISEA). My point is this, how can a child be doing well when they've been presribed Risperidone for extreme anxiety? School and EP are choosing to ignore things that crop up frequently eg difficulties in playground, etc. In addition, they've made a lot of excuses/delaying tactics for not assessing R for dyslexia and dysgraphia (he's nearly 8 and cannot write very well - writing resembles 5 year olds writing). Requested a CSP (Scottish equivalent of a Statement, which is unlikely to be granted since he doesn't meet full criteria - 'significant level of support'). Any advice would be gratefullly received.

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Sorry to ask but does he have a statement?

 

You can request a school be named on part 4 and if they refuse you can appeal, bottom line why they are keeping your lad in mainstream is because its far far cheaper than autism spersific school.

 

I recommend going down the sendist route.

 

JsMumxx

 

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Would educating your son be an option or something that you would ever consider? I ask because there are parents who are members of some of the home ed groups who have been in a similar position to the one you are in now and have found that by educating their children at home it has had HUGE impact on levels of anxiety and behaviour.

 

Cat

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I can see how home educating can reduce anxiety and behaviours. However, how do you overcome the 'isolation' aspect, for the child and yourself as outside activites/socialising for autistics is very few and far between? I think most of us put up with schooling as we hope our kids are getting something out of it, yet if they are anxious to the point of serious harm they need to be removed for their own preservation. So so hard is'nt it. I am so grateful school days are over for us , i was always torn between the two, x

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Sorry to ask but does he have a statement?

 

You can request a school be named on part 4 and if they refuse you can appeal, bottom line why they are keeping your lad in mainstream is because its far far cheaper than autism spersific school.

 

I recommend going down the sendist route.

 

JsMumxx

 

 

Hi

 

I've applied for a Coordinated Support Plan (CSP) which is the Scottish equivalent of a Statement. It is very unlikely this will be granted as he doesn't meet the full criteria. (I only applied to ruffle feathers if nothing else).

 

C.

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Would educating your son be an option or something that you would ever consider? I ask because there are parents who are members of some of the home ed groups who have been in a similar position to the one you are in now and have found that by educating their children at home it has had HUGE impact on levels of anxiety and behaviour.

 

Cat

 

 

Hi

 

I don't think R would do well being home educated. He's a sociable child (or at least tried to be, even if not always successful) and he does seem to like it on the whole, even if he does get incredibly anxious. For one thing I work full-time and need my job (at least I've proved I'm good at my job, even if I'm no good as a parent!). Seriously, if I thought giving up work was the best thing for R, I'd do it without hesitation. R would actually manage school very well if the right support was there.

 

C.

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I can see how home educating can reduce anxiety and behaviours. However, how do you overcome the 'isolation' aspect, for the child and yourself as outside activites/socialising for autistics is very few and far between? I think most of us put up with schooling as we hope our kids are getting something out of it, yet if they are anxious to the point of serious harm they need to be removed for their own preservation. So so hard is'nt it. I am so grateful school days are over for us , i was always torn between the two, x

 

Home Education does not mean that a child is socially isolated in fact far from it. Both of my sons were unable to function socially when they came out of school and both can now socalise very well. We joined in with out local home ed groups for quite some time as we were able to dip in and out of them, as and when, it was right for us. That way my son (I say son because my eldest was then passed that stage) was able to mix with mainstream children but in much smaller groups and doing activities that he enjoyed, which helped him not to feel so anxious and improved his self esteem. My son was having serious and prolonged bouts of cyclical vomiting syndrome because of his extreem anxieties due to his lack of support in school. We were ending off in A&E on a regular basis nothing was worth that to us. My son now has 6 good friends whom he sees on a daily basis. They all still attend school but that has not stopped them from playing with my son who is now 12. As I type this post he is heading home after watching our local Ice Hockey Team with his two brothers and two of his friends.

 

I do know that home ed is not for everyone.

 

Cat

Edited by Cat

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The way I got E into a unit was essentially through staged assessment. He was stage 3 which was the top level and then was entitled to exceptional funding. It took alot of doors being slammed and alot of blame being placed back in my direction, from believe it or not the Ed Psych! CAHMS were very supportive and came to a copuple of meetings to put the case that mainstream wasn't suitable. I looked at the school I think you are talking about and was advised to look at the school for the deaf(using code incase not allowed to name names!). E got his place in a communication base attached to a school and it was the best thing for him as it gave him a foot in both camps when he could cope with it.

 

Requesting a CSP seems to send everyone into a fluster as they have deadlines to meet and the meeting itself is a good thing as you are likely to get a range of medical and education professionals together and a carefully thought out plan might result in both camps adressing issues from their viewpoint.

 

I don't know if they still operate but IPSEA were a great help and can act on your behalf if needed, attend meetings with you etc. Enquire were not quite so useful to me. The other option is The Govan Law Centre who may be able to advise on the legality of it all and have an idea of what to do next if they are not budging.

 

It seems so long ago I went through this but I think the key was the staged assessment, I assume they have the same kind of thing in Edinburgh.

 

I have all my notes somewhere so will have a look through them and see if there is anything else that may help.

 

Carrie

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Hi

 

I'm fast approaching my witsend with this one ... My son has been in mainstream school for a full 3 years now. He's in P4 and has 20 hours LA support. School are saying he's doing well, but I don't believe he is. For one thing, he's bring all his anxieties home and vents - his behaviour can be extreme. CAMHS have recognised this and had recommended/prescribed Risperidone, which he's refusing to take. Baseline medical tests such as blood tests, height, weight, blood pressure have been impossible to obtain (after 4 attempts) and so that's not a safe option. CAMHS have detailed in a report that he's extremely anxious and talks a lot about peers, feeling different, not fitting in, etc. The school are aware of this. Yet, still say (despite having witnessed on occasions first hand how challenging he can be) that he's doing well. I made a placing request to an autism specific school which was turned down as it was deemed to be an unsuitable placement. Problem is that his Ed Psych spoke to Chairman of the PAG group who make placing request decisions) day before meeting and was quote 'quite clear that R is best placed within a mainstream school'. There are lots of issues/long term worries. For one thing, they're gradually reducing support, yet his behaviour at home is worsening. Feel like I've hit a brick wall. Asked for a new EP and that's been refused as there's no statutory obligation to meet that request. EP hasn't assessed R properly - assessments either haven't been carried out, are incomplete, or have apparently been carried out using wrong diagnostic tools (as advised by ISEA). My point is this, how can a child be doing well when they've been presribed Risperidone for extreme anxiety? School and EP are choosing to ignore things that crop up frequently eg difficulties in playground, etc. In addition, they've made a lot of excuses/delaying tactics for not assessing R for dyslexia and dysgraphia (he's nearly 8 and cannot write very well - writing resembles 5 year olds writing). Requested a CSP (Scottish equivalent of a Statement, which is unlikely to be granted since he doesn't meet full criteria - 'significant level of support'). Any advice would be gratefullly received.

 

Have you written to the both the school and EP involved about the above? I personally would write to them in a calm and matter of fact way stating that your understanding of the position is that because of EP advice, and because they have not assessed, or according to IPSEA have not carried out the correct assessments that your son is not receiving the level of support to meet his needs both in terms of professional input and staffing provision into his known areas of difficulty ie. social interaction, suspected dyslexia and dysgraphia (and list any other areas of known difficulty eg. speech, sensory issues etc where he has not been assessed or there is no input or support) and also state that CAHMS are aware of his levels of anxiety and stress which are being vented in the home environment and that you find this is unacceptable and want school to contact EP or other appropriate outside agencies and to write to you to state what THEY are going to do. Say that you are happy to go into school for a meeting if that would help move things forward. And make sure you take someone from the Parent Partnership or equivalent with you.

There is another organisation that has been mentioned in other posts called KIDS. I think they are also able to support and help parents regarding education. Not sure if it reaches up to Scotland, but worth talking to them.

 

Does Scotland have the equivalent of IEPs? If so then these should be setting SMART targets and when there is not progress that should be recorded. Eg. at the next meeting make Social Interaction skills and Handwriting skills a target. School then have to say 'what' the target is and 'how' they intend to meet it.

 

And then it takes this type of consistent pressure to slowly 'up' the level of support and input. This then becomes your proof that a Statement (or equivalent is needed) ie. the support is not enough to meet his needs, or the school is not meeting their needs.

 

Does the NAS run SEN day seminars about the SEN process in Scotland? These are very useful because it tells parents what SHOULD be happening. Do you have the Scottish equivalent of the SEN Code of Practice. What does that say about your situation?

 

You could go along the route of getting a private Educational Psychologists report if you feel that would help. But you need to consider a cost of around £1500 for a decent report by a professional that has experience of ASDs and also Tribunal work. And you need them to have this experience and to be independent ie. not working for education or the NHS ie. in private practice. Then, when you have their opinion that should give you a good indication of whether you have a case to go to tribunal. And their report will be your 'written evidence'. But you also need evidence that you have pointed things out to the school/Educational Psychologist and they have not done it. You also need proof through IEPs that targets have not been set, or not met, or needs not identified etc. Don't every rely on verbal information. You need everything in writing from them and you need to put all your communications and requests in writing to them. And it does take time. It took me over 2 years to get what I needed to go to tribunal.

 

But as a starting point get on the NAS seminars. Get the SEN Code of Practice for Scotland and read the relevent sections. Get advice from NAS/IPSEA/KIDS and start writing to school/EP. Involve the PP and start concentrating on IEP targets being relevent to his difficulties and being SMART. Find out about a good private EP who knows the Scottish SEN process and is independent and experienced in tribunal work and just speak with them.

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Sending you huge >:D<<'> >:D<<'>

 

Your son sounds very much like my boy. Bringing all the frustrations of life home to you every day.

 

Can't offer any advise as my frustration levels are running high when it comes to school but all I can say is that you should hold you head high and keep plodding on. Who says its unlikely he will get a Statement (or equivelent)? my son's school said the same and he has been awarded a high level of 1:1 by the LEA. Trying to make sure he gets it is something else. Go with your gut instincts, if you think he should have it then keep pushing, you will doubt yourself but your first instinct is ALWAYS the way to go. When the LEA ask for your thoughts disregard the tiny boxes they give you to write in and type out how things actually are on a separate sheet, it doesn't matter what anyone else thinks you know best. DS's ed psyc refused to refer him to CHAMS saying that star charts should be enough to control him, I sat in the room with her for nearly an hour before she would refer so once she realised I wasn't going to budge she gave in. CHAMS diagnosed straight away and the information they gave the LEA helped enormousely - plus he is now calmer due to the Ritalin.

 

 

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obviously you know both your son and the school best, but it is possible that he is doing Ok at school - some ASD kids spend all their energy holding it together at school then all that anxiety & other issues come bursting out everywhere else - be that home, clubs or CAMHS. \if that is the case, it might be that the school is not being deliberately awkward, but honestly thinks he is doing well..... are there any specific incidents that you know of that you could discuss with them? or a member of staff you particularly trust? or would your son be OK with you "sitting in" the school for a day to see what is really going on?

 

What is it you want to achieve for your son? If you are only looking at the school setting, and he is doing OK in his mainstraem school, they are right that he is better staying mainstream! perhaps its worth asking CAMHS if they would attend a meeting with you & headteacher to discuss out of school issues so the school understand what you are talking about when you say he is not doing OK.

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obviously you know both your son and the school best, but it is possible that he is doing Ok at school - some ASD kids spend all their energy holding it together at school then all that anxiety & other issues come bursting out everywhere else - be that home, clubs or CAMHS. \if that is the case, it might be that the school is not being deliberately awkward, but honestly thinks he is doing well..... are there any specific incidents that you know of that you could discuss with them? or a member of staff you particularly trust? or would your son be OK with you "sitting in" the school for a day to see what is really going on?

 

What is it you want to achieve for your son? If you are only looking at the school setting, and he is doing OK in his mainstraem school, they are right that he is better staying mainstream! perhaps its worth asking CAMHS if they would attend a meeting with you & headteacher to discuss out of school issues so the school understand what you are talking about when you say he is not doing OK.

 

 

Hi

 

Thanks for your response. Problem is that my son's behaviour at school seems to vary (we definitely see the worst of it at home), but things seem to come in peaks and troughs. I think that's the way it's always going to be. There's lots of playground issues and there have been lots of incidents in the school that the school have chosen not to report, for example, my son hit his LA and she wasn't going to report it. My main issue is that I cannot conclude that he's doing well at school (given there are lots of little things - and on occasions bigger issues that crop up) when he's been prescribed Risperidone by CAMHS. R is obviously bringing home all his anxiety relating to school home. So, it's very difficult, I can see that school want to say 'oh, isn't he doing well' (and conveniently forgetting about issues), when they're not on the receiving end day in day out, but that's no reason to dismiss issues. If I were an alcoholic for example (which I'm not, though it's a wonder!), then school would take that seriously and likely take steps (ie SS), so if what goes on at home can affect school life, how can it not work the other way around? I believe if R is stressed at school and venting once home, that this shouldn't be dismissed. It's incredibly frustrating. I've been having lots of meetings and think I'm finally starting to make a point. It is very difficult though, when you have a child that's inconsistent. I'm a big believer that time will tell, so I guess it's a case of waiting.

 

Thanks everyone for your comments.

 

C.

 

C.

Edited by cmuir

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If there are lots of incidents in the playground, then maybe you can look at things like the social use of language. Your son may want to join in and play and just not know how to do that.

Does your son give you any clues himself as to what is upsetting him.

For example I recently had a phone call from my son's school to tell me that my son had been very upset at dinnertime because two boys had been trying to kick down the toilet door whilst he was inside. School were very good about this. The boys parents were called into school and my son was taught what he should do if it happened again, and he has also been shown another toilet he can use which pupils don't usually go into.

However, it was only after the TAs phone call, when I asked my son about it, that he even told me what had happened. So without the phone call he would not have volunteered any information. And when I asked him if the boys had kicked the door and frightened him he said "yes they do it all the time and that is why I don't want to go to school".

So obviously it had happened on other occasions. So I told school about that, and now I do ask him if it has happened again. He says no and that he is happy in school.

It is very difficulty. I really do sympathise. But just try to communicate to school how hard it is at home when he comes back after school and everything comes out then. As playground incidents have been mentioned in your post, I presume that both you and school know about them, and that this might be an area that can be worked on.

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