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AS not coping with school

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OT came in today and agreed things can't go on the way they are. Currently, she described his as excluded in an inclusive environment.

 

She didn't have any easy answers regarding alternative placements though.

 

I wondered what would happen if I stopped taking him in. It was such a stress today and the younger one has started crying in the mornings as he knows we are going home earlier in the day. My son would refuse to go in without me. The head wasn't sure how this would be treated.

 

If you are at this stage where he is refusing and you are just managing to get him in, but feeling uncomfortable in doing that, or in what you are having to say or do or theaten etc to get him to comply, then I think you need to get professional advice in writing on that.

 

I went back to the Paediatrician who had diagnosed my son, and we agreed that a referal to Clinical Psychology was needed.

 

When I went to the appointment [the first of a number of appointments], I was very specific in asking them what level of physical or mental force I should be using to get him into school. [At that point I was threatening and using punishments, having to physically dress him and drag him out the house to the taxi, having to feed him because he refused to eat. Often he threw up either at home or on arrival at school out of anxiety.]

 

Clinical Psychology told me that I was only to use gentle encouragement. So I knew he would be out of school if that was all I was supposed to use.

 

The advocate I used at the Tribunal also suggested I taught him a hand signal [bSL] to use if he was in a situation and needed to come home. ClinPsych agreed this was a good idea because when anxious he lost the ability to speak. Also they said my son needed to learn that his communications were being listened to instead of being encouraged to try to carry on or comply.

 

So we taught him the sign for "finished", and he used that.

 

I did let the LA put together a package where a specialist teacher collected him from home twice a week for 1.5 hour sessions. He often refused to go, and we accepted that refusal. Or he went and came home early. At he beginning he told me that he had used the sign and the teacher had ignored him. So I sent a letter about that. My son wanted to learn and wanted to be in school, but when he could not cope, his communications had to be listened to. Because if you don't trust that you will be allowed to stop when you have had enough, you will refuse from the outset.

 

Anyway, that went on for a number of months up to the Tribunal. Clinical Psychology also referred us onto CAHMS due to a suicide attempt.

 

But what helped me was that, like you, no-one was giving me advice on what I should/should not do. That is why I pushed ClinPsych for their advice and then asked them to send it to me in a letter. If they had not sent a letter I would have sent one to them with the advice they had given me, asking them to confirm by reply that that was how I was to proceed. Because I was at my wits end. My son had attempted suicide and everyone still seemed to be expecting me to force him into school. If he had killed himself I would never have been able to live with myself. I could clearly see that he was not coping and could not take it any longer. That was what he was telling me. I even found him in tears in the bathroom a number of times, and from listening outside he was saying "I'm stupid, i'm rubbish, I can't take it anymore, I wish I was dead." If that is what he was feeling and experiencing I would be crazy to continue dragging him into a taxi, into a school environment where he eventually became mentally ill.

 

So I would advice you too get something in writing from ClinPsych, because it also covers you from the EWO. And no-one else will be prepared to give you any advice.

 

I also agree with wha Canopus has said. Academic results are not the be all and end all. If he gained a degree, but was still unable to access any kind of working environment that would be horrendous.

 

I don't know what qualifications, if any, my son will get. What I do know is that his attendance is quite good. His difficulties are being recognised and supported. He is being taught some social and life skills in 1:1 and group situations which, if learnt, will be helpful to some degree. Even if those skills do not come naturally, if they are taught as a 'process' it maybe something he can apply to situations to try to gain some understanding of them.

 

I have learnt to accept that I can never assume my son can do something, and also never assume that he cannot do something.

 

For example, my son agreeing to go on a skiiing holiday to Italy! Yet he refuses to walk on the pavements outside the house.

 

He has said this is because it was cold in Italy and therefore no flies around or germs in the environment due to the snow. That gave us all a real insight into what his major issues are on a daily basis in the home/community/school environment.

Edited by Sally44

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Canopus - but my son does want to learn, do exams, go to university. This is where he sees himself.

 

 

I agree that forcing him to socialise in a mainstream school is not the answer, but, nor is a special school from what I have seen so far.

 

The fact is he is not incapable of life skills, independence, social skills or socialisation. He just cannot cope with this in a mainstream school setting where these skills regress as he withdraws.

 

We are beginning to think that HE might be the answer in the short-term because he does learn skills at home and can be confident out and about. He does not suffer anxiety generally. He just doesn't want to be with 30 peers. I won't pathologise that if he can cope in normal life situations. School is not normal life.

 

I think the added problem is that he does enjoy having friends (and he has some at home) and socialising. So he does feel like he wants to be in a school of some sort. I have yet to find one.

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babnye1, on 30 Apr 2013 - 20:23, said:

Canopus - but my son does want to learn, do exams, go to university. This is where he sees himself.

Does he have any particularly strong subjects or subjects he really enjoys? AS kids almost always have uneven profiles and are ahead of the curriculum for their year group in a few subjects but struggle with other subjects. If he has strengths in certain subjects then consider accelerated learning and taking the GCSE before Y11. This will almost certainly have to be done as a private candidate because very few SEN schools enter students in for exams early. I doesn't matter if the grade is poor because GCSEs can be taken an unlimited number of times.

 

I find the bit about university intriguing because AS kids tend to have strong interests with a good idea of what career they want in the future and what course they want to study. I have not encountered any who want to go to university with no idea what course they want but I have found plenty of NT kids who think along this line - probably for the social side or the impression that university opens doors etc.

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We are beginning to think that HE might be the answer in the short-term because he does learn skills at home and can be confident out and about. He does not suffer anxiety generally. He just doesn't want to be with 30 peers. I won't pathologise that if he can cope in normal life situations. School is not normal life.

Definitely keep the HE option open. My advice would be to investigate the local HE scene to establish an idea of who the local HE kids are and whether they have any similarities to your son. Whatever option you choose in the end you will almost certainly have to be responsible for providing some services - whether they be academic, social, or life skills - because you will be hard pressed to find a school that provides everything. I wouldn't waste too much time and effort battling the system in the hope that the state will provide EVERY service your son needs because they won't.

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I think the added problem is that he does enjoy having friends (and he has some at home) and socialising. So he does feel like he wants to be in a school of some sort. I have yet to find one.

HE kids have friends and some have more friends that at any time they were at school.

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Thanks. I think he is a little low on confidence academically to think too far ahead about subjects but he is exceptionally good at literacy strangely - not your typical Aspie scientist! I think he sees e process as validating because he is good academically and that is so much easier than the social side.

 

We have HE before and he didn't like the groups of NT children so that was a bit limiting but he may be better now he is older.

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The thing you have to remember is that if you HE the LA no longer has any responsibility towards your son. Often that can mean that the child does not see SALT or OT or EP at all.

 

Also when you get the transfer to secondary stage you will have no evidence [because no-one will have seen him] as to the type of school he needs for secondary. That may mean you have to get all independent reports if you seek an independent school placement at that time. Unfortunately it helps if the child has not been in mainstream for some time due to anxiety etc. HE may be seen as the parental choice rather than the only option you were left with at the time.

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Don't forget though, that HE'd children are still assessed yearly by the LA to make sure they are gaining suitable education so he will still be monitored to some extent and 'known' to the authority.

 

~ Mel ~

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I am thinking of trying to be more creative and having this as part of the statement. I know lawyers/parental advocates who have achieved flexible packages. It is not easy but not impossible.

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Don't forget though, that HE'd children are still assessed yearly by the LA to make sure they are gaining suitable education so he will still be monitored to some extent and 'known' to the authority.

Not strictly true. All HE kids who previously attended school are known to the LA unless they move house. The attitude towards monitoring and assessment of HE kids varies considerably from LA to LA. Some LAs are known to consistently harass HE families whereas other LAs rarely check up on HE kids at all. One HE family who started HE at primary school age only had LA inspectors round twice - at the start of Y7 to find out what was happening about secondary school education, and at the start of Y10 to find out what was happening about GCSEs and exams.

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Well he wouldn't go to school at all yesterday. He always gets up early to get dressed but started wailing about putting his uniform on. I said he could put on something else or just go in for a short spell but he was exhausted.

 

I spoke to head who just wants to do whatever he can to help. I emailed EP who had previously advised him just going in for short spells and said we were waiting for advice.

 

Apparently she had rung head in the week and suggested he take the TA off the other child with autism!! Or that he just get any TA to man mark DS. Head said no to both. They have recutited someone but if he won't go in with me what is the chance he'll go in with someone else.

 

We went to see a special school on Thurs but he wouldn't even go in the classes and an away when he saw another child in the distance.

 

I have tried to get an appointment for GP but none available for 2 weeks so I've emailed to ask for an emergency appointment but he'll need to be referred to someone with significant understanding if Asperger's. I think I will ask GP to sign him off.

 

Meantime, LA have said refusal to amend at AR stands and despite curent problems they will look at transition in summer but that would give rise to a right to appeal.

 

That is in the hands of the lawyers now.

 

God, we were supposed to be buying a house this week after sitting in rented for ages because we didn't know what to do with DS's schooling. I can't cope with moving now,

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While you are looking for schools I would not take him with you. He won't cope with the changes. He's highly anxious already. He won't know how to choose if he likes it or not. You have to make those decisions, and then he could go for a day with you and maybe just see the OT/SALT.

 

My son began his new school on just two afternoons a week. He only saw the OT and SALT and did not meet any other children for some months.

 

I'm not sure you are recognising his level of anxiety yet. You have said you don't think it is anxiety, just that he does not want to meet other kids. But he ran off. That is fight or flight mode. He is highly anxious from the descriptions you are giving.

 

Regarding a placement. You want similar academic ability. That he could sit GCSEs if he were able enough. SALT and OT on site. Other children with high anxiety or OCD. How do they access psychologist or psychiatrist. Do they have children with challenging behaviours. What kind of behaviours. How are they managed. How would your child be protected from them.

 

In my son's school there are historically some children with those types of behaviours. They have adult 1:1 all the time. None of those children are in my son's class. I know that any incident would scare my son. So you need to know what your son will be experiencing on a daily basis. But also remember that bullying is probably going to, or has happened, anyway mainstream.

 

This is going to be a very stressful time, and maybe for some time - so can you put the househunting on hold for the moment - unless that may mean taking you into a different LA jurisdiction.

Edited by Sally44

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Moving house is a very stressful time, do you think this could also be a factor in your son's anxiety? My lad was 10 when we moved and he became very stressed. When we did move into the new home, he was extremely insecure and couldn't be left on his own in a room. If I was in another room and he heard me opening a door he'd rush in thinking I was leaving and abandoning him. I was in the garden one day hanging out washing and he became hysterical. Totally irrational, but the upheaval of moving brings out a lot of anxieties for everyone.

 

~ Mel ~

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Our son refused to go into school on a couple of occasions last week - and refused to do much work on the days when he did - so may be the beginning of the end for that placement.

 

Like you we are also keen to move house, but having to hang on owing to the uncertainly about his schooling.

 

One tip I did get from the solicitors is that the time to move is during the appeal process - if you have an appeal pending and you move to a different LA region, then that LA must take over the appeal. Otherwise moving between LAs must be a very difficult process.

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Sally - I am not saying he hasn't got anxiety. I am really not. He clearly has. My point was that I think, given his experience his anxiety is actually a very normal response (almost like a traumatic stress response) rather than a clinically abnormal one. But it doesn't mean it isn't anxiety.

 

It was important to take DS to see his response in a different setting too and to be honest - what choice do we have? He is out of schools and we are looking at schools. Everyone we know works during the school day and family are miles away. We have no choice.

 

Mel - we have entirely kept talk of moving away from the children. We visited a house, liked it, put in an offer but have not proceeded as we wanted to keep the children calm and focus on the daily reality until we were sure. We spoke to DS last night and he actually said he would like to move because he thinks he can then get a dog!! But we have decided not to for now. To be honest, I was also partly worried that LA types might also then say, as you have, 'oh you're moving no wonder he is anxious'!! But he really has not had anything to do with the discussion about that until last night.

 

Bed32 - we are in very similar situations. I wish I could just identify what would be best for him as I could then focus on that!!

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By way of update. My son has been out of school for 5 weeks now. The GP signed him off and the EP and school supported this.

 

I now have a meeting tomorrow with EP, SLT, OT and school to discuss what the plan should be for my son in the immediate term and doubtless for secondary.

 

He has responded really positively to being out of school and has worked well at home . We have done lots of work on social skills and work around his interests.

 

So what to do? One big problem is that we haven't located any school which would be suitable for him at the moment - either for now or secondary. ASD bases are not feasible as they would mean he would have to be in the mainstream of the school most of the time. Other AS specific (and hugely expensive - 60k a year!) provision seems more geared to children with very challenging behaviour and GCSE grades aren't great.

 

We would move but not to an area more expensive so would have to go west.

 

A parental advocate we use has recommended asking for his provision to be delivered at home in the short teem so he still gets his SLt etc but remains on the school roll. She suggests we try and get control of instructing a tutor to work with my son.

 

I'm not sure that my LA will go for that. They are not even going to send anyone to the meeting tomorrow and I suspect they will just suggest he gets the 5 hours a week out of school provision with any old tutor,

 

I really don't know what to do. I don't want to lose control of everything and end up with the LA sending someone /anyone in to start setting work for my son who might not understand AS and who will set him back in terms of confidence etc.

 

I don't want to open up a can of worms. Perhaps I should just HE? What do you think? It is hard to get impartial advice. I think our advocate doesn't like HE and I know it's not ideal but she says things like - you can't be mum and a teacher which I actually disagree with.

 

Meeting tomorrow morning so any advice welcomed

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I think our advocate doesn't like HE and I know it's not ideal but she says things like - you can't be mum and a teacher which I actually disagree with.

A child's first teacher is his mum, we teach them so much in those four or five years before they get to school, we never stop teaching them.

 

~ Mel ~

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By law, when a child is out of school for 14 days, the LA is legally required to provide an education. The loophole LA's often use is that they need a "consultants" letter to specify that they are unfit for school. Can you get the psychiatrist or any other professional involved to write such a letter, and explain to them that without it the LA will not provide anything, as they are not legally required to do so, and you have the proof that they won't because they've done nothing over this last 5 weeks.

 

I understand what your advocate is also saying, because once he is off the school roll you have sole responsibility and probably would lose SALT/OT input etc.

 

At this meeting I suggest you specifically ask the EP what school she recommends that the LA uses for other cognitively able children, like your son. They may well be using another school - ask the LA for their list of maintained, non-maintained, approved and independent schools. You definately do not want one for emotional and behavioural problems. Anything recommended has to be agreed with the LA anyway, because they fund it. So by them not being there they are again trying to delay any provision.

 

But if you get the professionals letter, in the interim, the LA must provide some education.

 

AND, I know what you've said about ASD units, but if your evidence proves he cannot cope mainstream, and your reports are saying he needs the environment of an ASD unit, then the LA maybe forced to pay a teacher to teach him in the unit. As you know it is about needs, and about them being met. I have also heard of part time in school and part time at home. But again, in school he would need a teacher just for him in the ASD unit [if that is the only option in your area - and you are not looking at termly boarding further away].

Edited by Sally44

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Thanks. He has been signed off and this is accepted by everyone. I have not been asked to produce a consultant's letter. There is no question of anyone asking him to return.

 

It was agreed at the meeting that he remains on the roll and will be signed off until the summer and I will work with school to continue educating him at home and he will have access to OT and SLT.

 

I will look for suitable tutors and we will look at e-learning etc and try and build up an education otherwise package (whilst still being on the roll) while also looking at indy SS

 

Indy SpLD schools don't want him. AS specific schools seem to be for more behaviourally challenging children. I don't want residential.

 

We will review at the end of term for transition.

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You are saying that you will work with school. Aren't the LA going to provide any tuition themselves? You don't have to do it all yourself, unless that is what you want to do. If you want a teacher to come to the house, then the LA should provide it. And that teacher could liaise with school.

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Thanks. At the moment, no. I don't want an LA tutor to come to the house. They will just send anyone they can get their hands on and we are doing well at the moment.

 

I wanted time to think about placements, or an education otherwise package - finding a tutor myself.

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I don't think you need to rush into making the HE official. It sounds as if you are doing it already informally and I don't see the LA imposing an expensive tutor on you against your wishes.

 

At this stage I am sure you can do a better job of educating him than a mainstream school can, the only issue would be the social side, and there are ways to do that too outside school.

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Okay if that's how you want to do it. It is just that if you do find a school you want, as you will already know, it helps your case for the LA to have tried and failed. By doing it yourself you are not giving them that chance to fail - so at any tribunal the LA may well stand there and say they have a "plan" they want to put in place first to see if that works as your parental choice is not a good use of resources [ie. much more expensive].

 

But it is good that he is responding positively to being at home. Make sure you keep a record of that.

 

When my son refused school he started sleeping on his own in his own bed. He hadn't done that for years, he always needed me or his dad in bed with him due to anxiety.

Edited by Sally44

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I think you are misunderstanding me! There is absolute consensus that school has failed. I am not electively home edding. He is on the school roll. The LA have nothing to offer or have tried to offer nothing and so we have cobbled together a short term plan with everyone's agreement. The Ed Pscyh has asked that I investigate tutor options.

 

If we find a school we will ask to go there but I am not grabbing at any old school (Indy SS or not) just for the sake of being in school. Bed the social aspect iof school is a nightmare for him. Socialising in school bears no relation to real life and he is doing fine in real life, he just can't cope with school.

 

Keeping on the roll means he can access school if he wants to and we will put together a package - SLT, OT tutor (off curriculum if needs be). I'm coming to the view that most of the teaching and learning is pointless at primary school anyway, we may as well follow aared down curriculum which interests him and learn that way. Building basic skills too such as numeracy and literacy, When he comes to take exams he can focus on getting through the he doesn't like.

 

I have a friend HE and her 14 year old now has 6 GSCEs. She basically avoided a lot of the KS3 curriculum and went to th stuff that mattered.

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No I understand what you are doing. It is just that from experience of advising other families, and my own experience, what the LA/EP etc say to you can bear no relation at all to what they say at any Educational Tribunal. But I think you will gather that, if and when you do come up with what you consider a workable package and the LA refuse - thereby forcing you to a Tribunal. If that happens, then often the LA does argue that they have something else that the parent did not try - and they do that to put doubt into the Panel's mind as to what the child can cope with.

 

You say everyone is in agreement that the placement has failed and mainstream per se is not suitable. Do you have that in writing?

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Thanks but I am not sure what you are suggesting I do when you say "it helps your case for the LA to have tried and failed".

 

The LA is offering nothing. They are not trying anything. They know he is out of school and that he has been signed off. They know we have all met and this has been fedback to them.They were asked to the meeting and did not attend. They are not even complying with their statutory obligation to provide suitable education while he is signed off. They are not suggesting alternative placements or strategies or anything.

 

I can't exactly invent these things for them and try them out just to prove they don't work in case they raise something later :wacko:

 

The meeting was recorded by my representative who typed it all out on her laptop and I will circulate the notes for agreement.

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Maybe just sending them a letter stating just what you have said above could be useful because that is your evidence. You just have to cover every base. Or if you have any meetings make sure you minute them or record them.

 

You just need as much on paper as you can get. You know you can't submit any verbal evidence, so whatever anyone has said is worthless unless you have it on paper.

 

No you don't need to invent anything, or even push for them to do anything. Just state the current situation as it is.

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I agree. Thanks Sally that is good advice and it has prompted me to get my advocate's record of the meeting which I can send to everyone involved. School as completely onside and honest too and we use direct payments for the SLT who we instruct ourselves so there is a fair bit of independent evidence

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So what are you actually hoping to achieve at the moment?

 

It sounds as if things are in a fairly stable situation at the moment - ok so he is out of school but you seem to be happy with the way his education is going. I would think no one is going to be in a hurry to change the situation unless you press. There seems to be to be a good case for just letting things run as they are for the summer If he is happy and settled now why risk upsetting that?

 

You could try to get the LA to provide more tutoring at home, but if you do you are unlikely to have much say in who you get, any more than you have a say in the teacher he has at school. The routes for you to get more control over the resources, or even to get the LA to do their duty will take a lot of time and effort to follow (either Tribunal or Judicial Review) and so are probably not worth pursuing except as part of a longer term strategy.

 

Do you have an appeal pending now? If not you should think of engineering the right to appeal, request an emergency review or reassessment on the grounds that he is out of school. Once you decide what you want to achieve for next year and beyond it will be useful to have an appeal in the pipeline - I think you will be very lucky to get everything you need without one.

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Yes. Things are stable. I haven't seen a SS I think is any good. I know we've exchanged messages about one very close to where I live. I don't know if you've visited it but they won't even let DS do a taster session til next year and there is no way I am naming a school on that basis. I don't know why these schools think its all about them.

 

Anyway, I think there is possibly no fixed long term plan. Flexibility is what is needed and we are going to put together a package which will be in PT4 of the statement. Any tutors will be picked by me. If costed, it won't be much different to his current in school package. It's a case of using the funds in a different way and being more creative and flexible.

 

It may be more acceptable than spending 60k on a school where half the curriculum is art and design.

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If you are not sticking with the current placement, you won't get an Appeal before the start of the next school year. Any school other than mainstream [and some mainstream ones too], including ASD Units are going to be full. So just bear that in mind especially for transition to secondary stage, because you will need to lodge an appeal around February/March time to be heard and receive the Decision before the start of the summer holidays, so he has a place for the start of the school year in September.

 

That should give you some time to test the waters and see if the package you put together is working.

Edited by Sally44

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Sounds like a good move (our latest appeal went in yesterday)

 

I presume you will be able to name a school that will see him up to GCSE which means things should finally get settled.

 

All you have to do now is find the school.

 

I went to the Autism show in London yesterday - saw a number of specialist schools - most of them say they cater for average to above average intelligence, and go on to say they have some pupils capable of sitting GCSE!

 

Only one, when I described my son, said he might be too bright for them

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But that worries me - the approach 'we have some capable of sitting GCSEs'. Does this not mean they are the exception rather than the rule? I worry how experienced teachers are in teaching to that level in those circumstances.

 

I don't hold out much hope for finding an appropriate specialist placement based on what I have seen so far. I think also that DS changes as he grows so a more flexible, creative approach might be needed.

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I think that if your child is capable of taking GCSE, then you would be aiming for that in whatever environment, whether that was in school or at home. A MLD school is not going to be able to do that. And the child may not cope mainstream. So out of the choice of home ed, or a specialist school where they can differentiate work for pupils capable of GCSE, and can deliver that in an ASD friendly way, and can deliver SALT or OT and Life Skills and Social Skills etc is surely the better option?

 

Time and time again I come into contact with families whose child has remained mainstream, or part time mainstream, only to completely refuse school altogether at the time of GCSEs because they simply cannot cope anymore. Get the environment right, or as near as damn it, and hopefully you stand more chance of your child taking those GCSEs.

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But I don't see that environment in AS specialist schools either. I see curriculums top heavy with cooking, arts, photography and D&T. I see low GCSE results with the occasional child achieving several passes.

 

I don't think mainstream is right.

 

But I have not seen an Indy SS that looks right either within our area. SpLD schools all reject him as too complex, AS schools seem to cover a culture of low academic expectation with art and life skills. I can't possibly understand how some of them get away with charging 60k for that.

 

My son has already rejected mainstream so I will have to create my own package. I can't see him getting anything particularly beneficial from school.

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Exactly, that shows they have a very broad view of "average ability" :(

 

One also sad some pupils reach level 6 or 7 in maths and science - but our son is already at a good 6 in maths an a high 5 in science.

 

On the positive side the staff numbers are so high that they can in theory offer a tailored curriculum - and several of the schools say they have links with local schools and in that pupils can go there for some lessons, Of all the schools we've spoken to only a couple genuinely seem to try to stretch the pupils to reach their potential (mind you most mainstream schools don't either)

 

It all makes it so hard to work out whether a school can challenge the bright pupils - given what a fight it will be to get him into any of these schools it is very hard not knowing whether it will be the right choice.

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It's so difficult, I know, and these problems do not go away. My lad is 19. He has been bored out of his mind for the last year at college because he has been on a one-year foundation course. He is with kids who have, for whatever reason, missed out on GCSEs or are not sure what to do with themselves and they are very rough and streetwise and have no qualifications. On the other hand, my lad has A grades in all three sciences but not the social or communication skills to manage on a mainstream course so he has been stuck with kids working at a very low level of foundation entry level maths, etc., and has gained nothing from the year at all. There STILL isn't a suitable place for him, it seems.

 

~ Mel ~

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I think babnye is a little unlucky is the schools they've considered - there are better schools out there, but perhaps not within reach. There are a handful of special schools that regularly get pupils to university ( which I would put as an important criterion)

 

One problem with day schools is that a typical special school will allocate time to salt, ot and so. On that takes time out of the curriculum so reducing the time available for academic teaching

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