AS not coping with school

[babnye1]

My son is 10 with AS. This is his third school.

 

He is finding school a struggle. He is between TAs as school are recruiting for someone new. He has full-time support. His previous TA was really unhelpful and didn't understand his needs.

 

His school have been really helpful and he was doing well but has always struggled staying in class and even when he was doing this, he always complained about how hard it was.

 

However, he has really been struggling since Feb half term and completely fell out with his TA. School agreed to recruit someone new but school is very small and there are no spare TAs so I have stepped in and I have got him back in class gradually myself but obviously I can't TA him long term.

 

I just wanted to support transition as he won't cope with another short-term new person so it is not as simple as demanding a replacement for him in the meantime.

 

But I feel I am probably just papering over the cracks of the fact that school isn't working for him. He is due to go back next week and is saying he doesn't want to. He will probably go back if I stay with him but this is a lot to take on.

 

I feel he may need specialist provision but this will mean an independent specialist school.

 

What should I do?

[bed32]

You need to start off getting a better understanding of his needs, and then work out how best to meet them. Independent schools can be good - but there is a lot more that can be done in mainstream if you want to.

 

The specific problem at the moment is that the TA is just not experienced enough for the job. You need a TA with experience with AS and probably a range of other adaptions around his school day. Is there any one with AS training involved on a regular basis.

 

If he is 10 then I guess he is in yr5 - so at this point you need to be thinking about secondary school. I think you should be deciding where you want him to be then and consider the best way to get there - if you want him in independent school then you may be able to move him early, if not then it may not be worth moving him for less than a year.

 

It's he has full time support I presume he has a statement? When is your next annual review due?

[babnye1]

Thanks.

 

We dont need to get to understand his needs better. We have a statement and we have spent the past three years identifying those needs at considerable cost and effort. He has OT and SLT,touch typing, social communications programmes all on his tightly worded statement. He has also moved schools twice so that we have placed him in what we thought is the right environment.

 

So I really am a bit frustrated at the comment 'there's a lot more that can be done in mainstream'! What do you do if despite all this support a child won't go into class and doesn't want to mix with his peers?

 

And we have been looking at secondary schools . The mainstream schools are very reticent about meeting his needs. The ASD base is also circumspect given that he doesn't want to be in the mainstream classes.

 

School are recruiting for a new TA but I am not naive enough to think that there are highly specialist AS TAs who is also able to meet his academic needs are just queuing up out there waiting for a job in a rural primary. This is why I have stepped in as it could take months to get anyone decent. Even if they do, my feeling is he will continue being outside the class most of the time as the most integrated he is likely to be with his me as he trusts me most.

[bed32]

Sorry none of that was apparent in your original posting.

 

I won't add to your frustration by offering any more unwanted advice.

[babnye1]

No, I am sorry. I was trying not to set out the whole sorry story but you are right, it wasn't apparent in my first post.

 

I am just sat here not knowing whether to force him into school next week by saying I will stay with him or whether just to give up and on going in every day and say he is refusing.

[Kazzen161]

Can you tell us what aspects of school he is not coping with?

 

What aspects of staying in class does he find hard?

 

If we know this, we may be able to suggest things a mainstream school could do or to suggest alternative placements (whereabouts in the UK are you?)

[Sally44]

If he is 10 and he needs an independent placement, you need to get your finger out because it is unlikely the LA will agree to it, and you will need to go to an Educational Tribunal.

 

Unfortunately you need him to fail mainstream, and you going in every day is covering the fact that without you, what the school and LA are providing is not enough. Ideally he needs to be out of school for some time before a tribunal will acknowledge that his current placement has broken down.

 

Although it is a small school, what class sizes are there?

What ASD specific qualifications do the teaching or therapy staff have.

Are the OT, SALT etc on site to provide support when he needs it on a day to day basis?

What ASD specific teaching approaches do they use in lessons.

Does the SALT joint teach and work with the teacher to deliver the curriculum?

Do they hold joint meetings about your son and his learning?

Do they provide updated reports for AR using standardised assessments to show progress, or lack of it?

How many other children in his class and in the school have the same diagnoses as him?

Does he have any other SpLD or diagnosis such as Dyslexia, Dyspraxia, Sensory Processing Disorder, Dysgraphia etc?

Does he have an emotional literacy programme put together and delivered by a professional?

What social communication programme does he have, and is that delivered by the SALT?

Does he have 1:1 and group sessions with other similar peers for these therapies?

Is there any other school the LA could suggest that can meet his needs and has peers with similar cognitive ability and similar diagnoses, and can provide the therapy on site from a therapy team employed on site.

 

The above are probably what is missing from his current school. You need reports that state that he needs all the above. You need those professionals probably to attend as expert witnesses.

 

You need your son to have a trial period period at an independent school. You need your reports to state he needs the class sizes that they probably have ie. no more than 8 children in a class. That he needs a consistent team of teachers/TA/therapy team. And they need to offer your son a place at that school. They will also need to send the Head or Deputy Head to the Tribunal to give details of how they would support him with a graduated return to school.

 

When was your last AR. When is the Transition Review [usually October/November in the year before transfer. Is that this Oct/Nov or next year?]. If he would move to secondary this coming September, the LA should have told you in February which secondary school he will attend.

 

Another point to argue, if relevant, is if your LA has mainstream secondary schools with ASD Units. Probably the children in that unit will have a lower cognitive ability and therefore are not suitable [and from your description may not have the same diagnoses]. OR, they feed children from the unit into mainstream for classes, and your son would not cope with that [as he has not coped now, or with changes to TA.

 

Has he made progress over the last year academically, socially, emotionally? [from your post he hasn't socially or emotionally as he is not mixing with peers and is not coping - what are his academic results like?].

Edited April 14, 2013 by Sally44

[Sally44]

If it isn't working you have to come to terms with that.

Stop helping. Stop giving advice. Leave the school/LA to try to get him back in school.

 

Get an appointment with Clinical Psychology via your GP or Paediatrician. Ask for a referal to a team that have experience of working with children with an ASD.

 

Be honest with your child, and tell him that if he really cannot cope, that you will not force him [if you are having to use physical or emotional force to get him into school].

 

Ask Clinpsych how much "force" you should use to get him into school. They told me "gentle encouragement". Ask them to put that in writing, and ask them [if he is out of school by then], to state that he is not in school due to his AS diagnoses. That makes the LA legally responsible to provide education. But again, don't remind them of that. If they do nothing that is additional evidence that they have not meet his needs.

 

Remember this is not about not "wanting" to go to school. It is about anxiety. About not understanding or coping. About feeling different and having a lack of self esteem or confidence.

 

I remember the day I told my son that if he was not coping that he had to tell the teacher and ask them to phone me. He had a major incident the very next day demanding the school phoned me to come and collect him.

 

My son was trying to keep it together. Trying to do what they asked of him. Trying to stay calm. But he became mentally ill trying to keep that up. He really wanted to be a good boy. He wanted to learn. I told him that he had to stop saying he was "okay" if he wasn't okay. He used to say that because it was easier to say that and be left alone, than try to explain what you did not understand, or why you did not understand, or what was bothering you, or how you felt etc - because he could not communicate that because that is what being autistic means!

 

My son is much better where he is placed now. He does have days he refuses to go in, if he has had a particularly difficult day. But his attendance is good. He enjoys school. He's made friends there. He even went on a school skiing trip to Italy! I never dreamt he would do that a couple of years ago.

[babnye1]

Thank you so much for your posts.

 

The situation is:

 

DS is in Y5. We had an AR in March (following a Tribunal for more hours in Feb which the LA conceded) but we are scheduling another for summer term to discuss transition further. Transition was discussed and the SENCO from a mainstream school we had looked at attended as did the principal ed officer from the county DS's school is in (he is in a m/stream in a neighboring county). The mainstream school is worried about coping and we talked about that fact that he might not manage the ASD base at another school either.

 

But he has only been like this since Feb. He was going into class but had periods out. He is very comppliant and was going even though he hated class.

 

He is a mixed Y5/6 class but there are 2 teachers so he is generally taught in groups of 15.

 

He has 32.5 hours 1:1. His previous 1:1 was a trained teacher but she wasn't able to support him. School are recruiting for another.

 

He has 6 SLT and 6 OT visits a year and touch typing, a social communication and working memory programmes.

 

He dislikes looking different so delivery of provision has been difficult and it has fallen down on occasion and I have had to advocate for it to be done in a different way.

 

DS's main problem is that he says he hates the other children, he says he doesn't trust them, (there have been incidents of teasing which were poorly dealt with by his TA), he feels like everyone stares at him. I think he is getting to the stage where he feels very different. He doesn't want to go into the lunch hall or the playground.

 

He doesn't have a trusted adult. His class teachers are both newish to him as he had another teacher before Feb but mostly it has been left to the TA and he has complained bitterly for the last 8 months that he can't stand her and that she reprimands all the time. The school tried various things but because there was not spare TAs, and they thought this TA was going to go back to teaching, they did not move her.

 

Eventually, things broke down altogether in March when we set up a scheme for him going back into class (using a timer, doing 5 mins at a time), he tested it out with me, I handed it over to the TA and within an hour she was trying to force him to go back in. School said immediately that they would recruit and I said I would help support him,

 

I have got him up to about 20-25 mins in class during the lessons but it is very much under sufferance and he hates the afternoons as the Y5/6 groups are together then so we have been going out to do other things. I do his OT, his touch typing etc.

 

He won't go out at playtime, won't speak to the other children, won't do PE, dance, art, etc

 

I have spent alot of time, money and effort securing provision to help him learn skills to cope in mainstream. He is doing really well academically but he seems to be unable to cope with groups of other children and I am not sure this will get better.

 

Please don't get me wrong, if I could get him well-supported, I would want him in a mainstream school with his brother but I think I have been putting my own views on this above his needs. I am just not sure he will cope. And as you say, you have to make a decision on this earlier rather than later.

 

I spoke to his consultant paed last week about a CAMHS referral and she told me that if the anxiety related to school it was a matter for the EP. Others have suggested if I go to CAMHS the LA will say it is not a school problem! I don't know what to do.

 

I have emailed his EP and she offered to meet me next week to talk 'options' before involving the school as she could see me helping his not sustainable. She is helpful (she helped secure the 32.5 hours for his statement) but she is hardly likely to suggest an expensive statement.,

 

I don't want this to fail to prove he can't cope. I want to help him cope but I don't think I can.

 

Thanks so much for your time,.

[babnye1]

That should be "she is hardly likely to suggest an expensive school"

[Kazzen161]

It is not unusual for things to get more difficult at his stage, as our children become more aware that they are different + puberty starting.

 

It would be useful for you to go and visit a few independent, specialist schools - that way you will have an idea of what is out there and you will get an idea if your son would fit in better there.

 

An EP can recommend small classes, teachers with experience of AS, etc which may point towards independent schools (they can't recommend particular schools anyway).

 

It may be possible for the EP to talk to his class about his AS (if he agrees) and explain the difficulties he has and why he behaves in the way he does - IF it is done well it can help the children to be more tolerant and helpful. Ideally this is done alongside work with him to help him see it is OK to be different, that most people have some difference, and that he has strengths.

[babnye1]

Thanks. He goes back to school this week. Should I still take him in and stay with him? I just don't know how much I should force him to stay there. He just won't go in without me.

[Sally44]

Firstly CAHMS are psychiatrists. They typically work using medication. That maybe something to consider, but personally, I think the child needs to be in a placement that can meet all his needs before that is considered.

 

He won't go out at playtime, won't speak to the other children, won't do PE, dance, art, etc

 

Clinical Psychology work with how the mind is working. They do therapy. You need their advice for home, and their advice for school.

 

Your GP is not very understanding is he. Your son is not coping in school, but those reasons are just as valid outside of school. Problems with social communication, self esteem and confidence, feeling different, emotional literacy etc affect home, school and out in the community. He has AS and the difficulties associated with that diagnosis will affect all aspects of his life and are lifelong differences and difficulties.

 

So I recommend you go back to the GP, or a different GP and ask again for the referal and describe it as I have above. If they again refuse, ask for a referal back to the Paediatrician that referred him and ask them to refer on to Clinical Psychology. And also make a note of this in your file [which you should have all correspondence and notes about your son]. Because this is something you can use at Tribunal ie. Health and Education are not working together to meet this needs.

 

You also need Clinical Psychologists advice, in writting, about how much force to use - because as you already recognise, without your 'constant' support he will not go in. You need their advice for his Statement [which should contain advice relating to all his needs from professionals whether they are health or educational ones]. And you will need to push for it.

 

I remember you posting some time ago about your son, and it was clear that you wanted him mainstream. However if he is not coping in year 5 in primary, realistically he is not going to cope in a mainstream secondary school where there will be hourly changes for classes/teachers/peer group etc.

 

Even if you get a new qualified TA I think he will still refuse to go into school. This is due to anxiety. That is typical of his diagnosis, but also needs professional input for that - which is Clinical Psychology's department.

 

My own son also refused school for about a year. He too would not go out into the playground etc - whereas he did do when he was in year 4. He told me "I don't know who are my friends and who are my enemies". He had been teased, and some instances of bullying. But basically he did not have the social skills to know if someone was being nice or not. And when you think someone is your friend and then they do something that hurts you, you don't trust your judgement any more and so to protect yourself you steer clear of everyone. This also causes alot of anxiety too.

 

Remember that having an ASD means that alot of the time things are unpredictable, chaotic, stressful and cause anxiety. He will be working very hard all day long just to keep it together. He maybe at the end of his tether now.

 

As parents we do have to support our children, but there comes a time when we have to realise that what we are providing is not realistic or achieveable. At some point you have to decide where he should be placed for secondary, and if you decide that he really needs an independent placement, you need to visit those schools, decide on which one and ask for that placement. To stand a chance of getting it you have to prove that your son is not making progress mainstream. And you could prove that if you stop being so supportive. He should be able to cope going into school on his own. If he cannot you have to address that and accept it as fact. You have tried very hard. You have achieved alot of support etc. But it just is not enough.

 

Or you continue supporting him, he goes to a mainstream secondary school, and he refuses to attend completely later on. It is better to get it sorted sooner, before or at transition, than when he is 13, 14, 15 and have a year out of school then and have him fail examinations or refuse to try any other type of school at all. Now he is younger and is compliant. He may not be 2 years down the line.

 

Also the fact that he is compliant, and tries to do what is asked of him, is also how my son was/is. And that can cause them to force themselves to do things they really cannot tolerate. He could become very ill, as my son did. Due to that chronic level of stress over so many years, my son also developed OCD and has an additional diagnosis of an Anxiety Disorder. He is now on medication. He has therapy in school from a child psychologist and we are seeking Clinical Psychology input again.

 

Some LAs do place children in independent schools without even going to Tribunal, but it is very rare. For an LA to consider the cost of an independent placement, you really need evidence that your child is not coping and not making progress. Currently you are supporting him to such an extent that you are showing some 'progress' ie. he is going into classes for longer periods of time. Under those circumstances I don't think the school/LA would agree to an Independent Placement. But if you remove your support [which I know is very hard to do because no-one likes to see their child fail], then you will have the evidence that he is failing academically, socially and emotionally. If you remove yourself from the equation, I think it will all fall apart, which proves that even with the current level of support he isn't coping doesnt it?

Edited April 15, 2013 by Sally44

[Sally44]

Is he achieving his SALT targets, IEP targets.

What is the OT involved for?

[Sally44]

I also used to do alot of the SALT and OT work with my son. We had an educational tribunal in 2009, and we got alot of additonal therapy included, but not the placement. We used a solicitor at that time. And he told me that IF I had not been doing all this therapy, all the support, etc that I would probably have won the placement at that time. But I found it impossible at that stage, to stop. Because that would feel like giving up.

 

Two years later, in a different school, which was more ASD aware, and had an autism unit [he was still mainstream and not in the unit], he finally refused school. He was mentally ill. Personally I think he had some kind of breakdown.

 

So I had to really think about what I "wanted" and whether that was realistically what my son "needed". I had to make the decision that mainstream was no longer an option. And I had to get him into a school where he would cope and where he would be supported and have all the therapy he needed delivered by professionals and not me or TAs.

 

We had a very very difficult year. My son atttempted suicide. He was out of school and would not even leave the house. He had severe OCD symptoms and was very anxious all the time. He developed nervous tics and behaviours and rituals.

 

We won the independent placement and he started at his new school just for two afternoons a week. And those two afternoons were just for therapy, not based in the classrooms. He met his classmates in therapy and gradually was introduced to his class. Initially he sat in the class, but didn't do the lessons. He had a 1:1 and they would do things he liked.

 

It took about a year to get him back in school full time. And I know he is now in the only place that stands any kind of chance of meeting his needs. He would not cope anywhere else.

 

But that is my story. You have to take a good look at your situation and make a decision on how you are going to proceed.

Edited April 15, 2013 by Sally44

[babnye1]

Thanks for this. It was the consultant paediatrician who said CAMHS was for anxiety at home not our GP. She did say I could ask my GP to refer. Our GP is really good.

 

His previous SLT broke down as he didn't want to be in a group as it made him feel stupid. We have got direct payments for our own SLT now and he works on targets in a charity project and this is the only times in the week he talks to other kids as he loves the project. But he finds it very difficult to generalise what he practising outside the group as he doesn't want to talk to anyone! H has OT for sensory needs as well as fine motor skills. This has only just started after a battle as he was left to without OT by the LA despite his statement. I paid for someone to come in. She also works for the LA who are now instructing her under their block contact.

 

There is no one to support him at the moment until they recruit a new TA but if he doesn't go in it will be attribute to the absence of a TA. However, as you say, a new TA may not make he situation any better. I think DS has been going into class as his act TA forced him in and now he has had enough,

 

I worry that I will make things worse if I stop doing this and it will make it harder for DS to get back into school.

 

But he is developing a weird little yawning tic now and I so worry about his mental health.

 

We have a new head when we get back to add to the complication so I don't know how supportive he will be. The last head would not be sat on by the LA.

 

We also have to decide whether we are going to buy a house at the moment. We have been renting while trying to sort out DS schooling and have just put in an offer for a house but I don't know where we will live now as we might have to move for secondary. We are getting on and mortgages will be harder to get.

 

I have asked to see one special school but they said DS was too complex for them. I am trying North Hill but they seem to want to undergo an official process, get his education file etc, before they even see us.

[babnye1]

Sorry didn't see your last post before I posted. I am so sorry about our son and g,as that he is somewhere safe now.

 

The situation sounds very similar and I have been doing my level best paying for OT, paying for extra SLT etc myself, and going into school with him but I have said this is not sustainable.

[Sally44]

You should not need to be paying for OT and SALT. You should not need to be delivering that therapy yourself. You should not need to have to support your son to such a level as currently to get him inside the school gates.

 

From my experience, no-one does anything until it hits the fan. As long as you are supporting and paying, it isn't going to hit the fan. Additional resources/therapy and a different placement are ONLY ever possible where it is proven that what is currently being delivered in the current placement is not producing progress, is not working, that the child is deteriorating etc. And as long as you are holding up the dam it isn't going to break. You need to let it break for them to witness themselves that he will not go into that school under the provision currently detailed in his Statement.

 

And the fact that you have had to pay for additional OT/SALT should also be part of your evidence that that was what he needed, and that even with that level of support he has not coped, and therefore needs a placement with experienced SALT's and OT's on site as employed therapy staff so that they can meet his changing needs on a daily basis, support his anxiety and deliver his therapy flexibly across the week.

 

What does his Statement say about OT provision? If it is specific and has not been delivered I would not mention it to the LA now, but include it in your evidence for tribunal. If the Statement is specific, you could seek Judicial Review, for the LA to be Ordered to provide the therapy in the Statement. However, it may be better to seek a different placement and detail the fact that your son has not received the OT as per his Statement as part of your evidence.

 

Any LA that agrees to fund OT therapy has to buy it in. If your son has sensory issues, has the private OT diagnosed sensory processing disorder? If she has, has she stated he must have xx hours per term of Sensory Integration Therapy? You need that in writing and to state 1:1 and group therapy delivered by a suitably qualified OT.

 

Also for motor skills, does he have a diagnosis of Dyspraxia. If not the OT needs to diagnose and again put together a therapy programme of xx hours per term devised by an OT and delivered in school on a daily basis.

 

Regarding SALT. What you are saying is that he had a SALT programme. He could not cope with how that programme was delivered. So it was stopped! Make sure you have that in writing as it is a corker. Basically they could not meet his needs, and rather than deliver the therapy he needs in the way he needs it ie. 1:1 with a suitably qualified SALT, they decided to drop him.

 

And that relates directly to the fact that he is now having problems with social communication, which is part of the SALT remit. They have basically admitted they cannot meet this needs. And you have again stepped in the pay and deliver it. As long as you make yourself available as the donkey and doormat, they will happily let you do it because you are saving them money [sorry to put it in those terms - but want to make you open your eyes!].

 

Start to keep a daily diary of everything he says and does. I did that and submitted it. My son saying he was rubbish, stupid, a loser, wished he was dead, hated himself, had no friends, was scared etc. That he felt ill when he was asked about school, that it made his head explode, that he could not take it anymore etc etc. Those are his words, describing what he is experiencing.

 

And as the Independent SALT said at our last Tribunal. "XXXXX has voted with his own feet".

 

Yes you stopping the support will probably make it impossible for him to go to school. So let school and the LA try to sort that out themselves. That is their job. That is what they have their funding for. The Tribunal will want to see them try and fail, or not try at all. They won't see that with you in the way.

 

Make a note of any illness he says he feels such as headaches, tummy aches, feeling dizzy, feeling sick, tics like coughing, yawning, movements or noises. Any increase in autistic behaviour [my son started rocked, walking in circles, could not sleep, would vomit in his sleep, would vomit at the mention of school].

 

And start to do it all now.

 

At the summer review [where he will already be out of school if you stop supporting [and don't say that you cannot keep supporting him, don't mention it. If he refuses school, that is why you need Clinical Psychology involved. Go back to your GP and ask for the referal. Say you are worried about his mental health due to anxiety and that he is refusing school and is not coping there.] that is where you say you do not think that mainstream is an option any longer as he is not coping in primary school and therefore will not cope in secondary school. Don't get drawn into any conversations about what you want. Just say "We want our son to be in school and to be happy and confident to attend. We want him to be making progress." Now they are going to say he is making progress, but he isn't. And you will have that evidence as he will be out of school, not socialising at all etc.

 

Once you receive the LA's decision letter about whether to amend the Statement or not, you have the right to appeal regardless of if they amend or not. Make sure you appeal.

[babnye1]

Thank you so much for this.

 

Our SENCO has just emailed to say that the LA want to use the review we had in March as the Y5 transitional review. Our belief was that this was the AR but we were told a specific transitional review will be held in summer.

 

We haven't flagged up a school as DS had only just started refusing to go to class etc.

 

I am not worried about DS's mental health when he is not in school. That is the problem! The services don't want to know round here and from what I hear of CAMHS they are useless with children with ASD. I will speak to my GP though.

 

Do I need to get independent therapists involved now or is it too soon? It is always open to them to suggest it will all miraculously improve with a new TA

[bed32]

I have a lot of sympathy for your situation - I have been afraid for some time that we could end up in a similar situation. Luckily so far we have managed to get our son to go to school (if sometimes very late) but we are very conscious that it would only take a single incident at school for him to decide he really didn't want to go and then there would be nothing we could do - we have had him assessed by a couple of independent schools who will offer him a place if we find ourselves in the situation of having to move him quickly.

 

We have been a bit disappointed with some of the specialist schools we have spoken to, including some that are regarded as leaders in the field of provision for AS children. While mainstream is a long way from ideal we have not yet found a special school we like at the moment so we stick with that.

 

Note that there is virtually no limit to the provision you can force the LA to put in place to support him in mainstream, pretty much the only things that Mainstream can't do are residential/extended hours and small class sizes (and some ASD units do even that). The SEN legislation ultimately gives the parents a great degree of control, but it is by no means easy to get the LA to agree,

 

We have just had his statement modified to provide dedicated Psychology input (one afternoon every 2 weeks) to monitor issues such as his anxiety and to oversee and modify his programmes and curriculum. It also includes CBT (plus SALT, OT, Sensory diet....)

 

On the TA side, the statement gives us 1.5 TAs (with appropriate AS training). Following discussion with the school we agreed that it was not appropriate for the school to try to recruit permanent TAs as this would take a long time, it would be difficult to source someone with the right experience, would cause problems if our son fell out with them (highly likely) and so on. So we have asked the LA to source the TAs through a specialist agency.

[babnye1]

That is very interesting. Is your child in primary still?

 

I would like to think my son could stay in mainstream with a bit of creative thinking but what worries me is that he just doesn't want to be with his peer group and that these things become much more complicated at secondary. Who wants a TA around all the time then? You may as well get stamped 'different'.

 

I know what you mean about special schools too as they are the 'experts' it may be easier for you to have any control about the quality or direction of your child's provision.

 

But I feel the hurdle might be that he is getting to feel different and a multitude of different provision and a distance from his peer group will just compound that.

[babnye1]

Just to add our SENCO says they have had 3 replies to the advert for my son's new TA. This does not appear to be a great amount of choice. Of course, one may be very experienced but I don't want them just grabbing anyone.

[bed32]

Yes - our son is in Yr 5.

 

We think the closer he can be treated to "normal" the better his life chances will be, and once we move him into a special school there will be no way back into mainstream. Cognatively he is well above average and has the skills to do well academically, if we can overcome the limitations of his Autism. So we have taken the approach of getting a lot of support round him for the remainder of primary just to see how he progresses under that sort of tailored therapy and curriculum.

 

Realistically the chance of him surviving in mainstream in Yr 7 is vanishingly small but I feel that unless we try we will never be quite sure.

 

To us the regular EP input is key - if we can start to work with his anxieties and hang ups we may make progress. Without that no amount of OP. SALT and TA will address the underlying problems and things will continue to deteriorate until it all falls apart - and if we get there then our options are very limited.

 

We are very disappointed that so far all the AS specific schools have seemed very much second best so we don't really have anywhere where we want him to be post primary. We are going to look round another set of schools in the coming weeks are we are close to having to make a decision. We are very worried that we are only 6 months from deciding where he should be and we don't have any schools in mind where we would be comfortable sending him

 

The differentiation in the provision is of course an issue. Much of that should be done by the LSAs in the classroom itself (hence the importance in recruiting good LSAs) but also time out of the classroom is positive as well. He does struggle in that environment and to be taken out for 1-1 sessions gives him a break from the stress of the classroom environment and may help reduce anxiety levels.

[Sally44]

Actually, after this March Review [whether that is the AR or the Transitional one - which TBH is really too early as he is in year 5], once you receive the decision letter you can appeal the Statement.

 

You need to appeal on the grounds that part 2 does not contain all his needs [as it obviously doesn't], that part 3 does not quantify and specify provision for each of those needs [which it doesn't either], and you can name your parental choice of placement for part 4.

 

The LA must go with your parental choice of school unless they can prove that another school [which is currently primary, not secondary], can meet all his needs. Which I presume they cannot do as he is not coping in his current school.

 

But you need to decide how you are going to proceed, because even now you are still saying you prefer him to remain mainstream eventhough he is refusing to attend. He is refusing for a reason. Why are you still thinking mainstream with support? You've seen the support you'll get - not good. You are doing it all. And you really have to stop doing that if you want to have a chance of securing that placement.

[Sally44]

Why do you think that one TA is going to solve all the issues? This isn't a specialist ASD teacher [which he would get in an independent placement]. It is a TA. And from what you have posted he has 1:1 TA ie. most of his teaching/therapy via the TA.

 

In an independent school he would get the therapy mainly from the therapist themselves. He would be in a similar peer group with kids with similar interests as himself. He could make friends, as my son has done.

[babnye1]

I really was committed to everything you say. I have fought for full-time hours, SLT and OT and a trained TA. But I have started to doubt mainstream as I have just seen my son retreat from his peer group. This seems to be a massive problem for being able to function in a mainstream school. The social group has just moved away from him.

 

My son is very academically able but he is hugely sensitive to his environment and feels very different to his peers in a way which makes him distressingly uncomfortable. I wish it wasn't so. It is against everything I hoped for and it seems alot to ask a TA to be able to put this right.

[babnye1]

Why do you think that one TA is going to solve all the issues?

 

I don't think it will. That is my concern.

 

I have said that I would like my son in m/stream if it were possible. This seems increasingly unlikely now. But I know we have not gone far enough down the line for that to make any difference to placement.

 

Our LA are appalling beyond belief. They will do only what they are forced to do. I need to know what I want for him and I am trying to identify what that is in terms of schools.

[bed32]

Have you yet had him assessed by an independent EP?

 

Unfortunately that is an expensive business but it can be very useful. If you find an EP with a lot of experience with AS children (and don't go to one that doesn't) then they should be able to help out a lot both on what his needs are now and what placements may be appropriate. The down side of getting him assessed now is that the assessment will be too old by the time you get to your next tribunal and you will need to pay ,more for an update.

 

Pretty much all LAs are appalling - it is very hard work, very time consuming and very expensive to force them to do their job. The problem is there is no downside for them doing nothing and waiting for us to force them into action.

[babnye1]

I got an EP report in 2010 for his statement. We have an LA EP who was quite helpful in getting us increased hours but is not going to stat suggesting specialist placements.

 

I will ask our independent EP how much it will cost to do another report. But will have to think about timings.

 

Or do you have any suggestions.

 

The LA want school to out in writing that this AR was not the transition review. Our transition reviews are held in Y5 as SENCOP requires. But 5:71 seems to suggest that you can ask for an interim review if the AR could not come to a firm decision on placement.

[Sally44]

Has the LA EP carried out standardised assessments? Have they been specifically asked what additional support your son should have in school. Have they been asked to describe the kind of placement he needs?

 

LA EP's are employed by the LA, and so in some ways their hands are tied. But if they are asked direct questions, they should respond to them. They do have a code of practice and ethics.

 

I was involved with another parent in our village, and got her to ask for her son to be assessed using standardised assessments, and to start asking questions from the EP so that they had to set out in detail what the child's needs were, and what kind of provision/support/therapy/placement they needed. I did this thinking we would get some information we could use at Tribunal. But it actually turned out that the EP ended up recommending the child needed to be placed at the independent school my son was at.

 

I have other friends who have also ended up with their children at the same school as my son, and each of their experiences is different. One had to spend thousands of pounds and even get a Lawyer. Another had their son's placement recommended by the LA without them having to even ask. And yet another had her son go to a MLD secondary school, where it became obvious it was not a suitable peer group. Her son refused school, and the LA agreed for him to be moved to an independent school.

 

I think it is worth pinning the LA EP down.

 

If you are going to get any other independent reports you need them to be carried out so that they can be submitted just before the deadline prior to your Tribunal. Any earlier and it gives the LA/NHS the opportunity to re-assess after 6 months.

 

You need to find a school that can deliver a curriculum to his academic ability, and where the other children are around average cognitive ability.

[babnye1]

I think the thing about standardised assessments which were done without much dispute two years ago is that they show he has working memory problems and an uneven cognitive profile but he is actually bright. He is currently achieving well so academically that part of things is not a problem.

 

It's sensory, social and emotional needs as he can't cope with class and his peer group. I don't think this can be tested as such.

 

I will pin the EP down when I see her. She did say she wanted to talk options with me before I involved school.

[Sally44]

But those working memory and spikey profile may mean he cannot access alot of mainstream teaching. My son has exactly those same problems. He is assessed as around average for everything apart from working and short term memory. He also has Specific Learning Difficulties with dyslexia and dyspraxia which means problems with accessing information and sequencing it. On percentiles he ranges from 92 [where he would achieve a higher score than 92 out of 100 children] to <1 [where he would be the worst out of 100]. His speech and language results were similar ie. around 14/15 where 8-13 is 'average', to 2 and 3 on other assessments where 3 is considered severe difficulties.

 

He performed worst of all on formulated sentences. And that tied in directly to formulating and producing written responses to given questions or topics on specific language.

 

So although your son is 'bright', he may find it very hard to understand and access learning as it is being delivered in a mainstream school. If he has working memory problems he is not going to be able to hold information in his head and manipulate it and formulate responses to set questions/essays etc.

 

And these types of problems are often seen in dyslexia. Does he have dyslexia? From what you've posted he does have dyspraxia, which is not just about motor co-ordination and planning. It is also about mental planning and sequencing and organising etc.

[babnye1]

No he doesn't have dyslexia or dyspraxia. I think his problems are largely hidden in primary because he is doing very well academically.

[Sally44]

Why is the OT involved?

 

What is the touch typing for? If he has problems writing this could be dysgraphia or dyspraxia or both, and he could be avoiding dance, PE, art because of those difficulties.

 

Can he ride a bike, brush his teeth etc?

[babnye1]

Thanks. The OT is involved as he has sensory processing disorder and Hypermobility Syndrome - for which he has been udner the care of Gt Ormond St. This is also why he has touch typing.

 

I am not sure an additional set of labels help. He has got his needs identified through three years of OT assessment and a stay in Gt Ormond St and those needs are set out in Pt 2 with the provision to meet them set out in Pt 3.

[Sally44]

I used to think the same about labels. But, as an example, without a diagnosis of "Sensory Processing Disorder", he did not get "Sensory Integration Therapy" as a provision. And that therapy is very important because it can only be delivered by a suitably qualified OT who has completed the SIT modules, and can only be delivered by an OT employed on site.

 

[What he did get in his first Statement was a sentence which read "the OT will draft a programme of OT to be delivered in school". That never happened because the OT said she spoke to the school and the school said they had no concerns. I could have sought Judicial Review, but I held off and just added that to the list of things in his Statement that were not being provided. A Statement is a legally binding document. The provision it contains MUST be delivered, and it is the LA's responsibiltiy to ensure it is funded. And the OT had no right to not draft this programme of OT, as any changes to provision MUST take place at a Review, where the suitable professional would state the child no longer needed it, the Statement would be amended, and I would have the right to appeal that amendment. Just not providing agreed provision is illegal. And I think your son is not receiving the provision in the Statement too.] At the Tribunal the Panel agreed with me. And, the school have the nerve to say they had not told the OT my son did not need a programme, which caused the OT to confirm that they had told her that. And she also confirmed that the NHS did not fund Sensory Integration Therapy or provide OT input for Dyspraxia. Therefore the ONLY placement that could deliver that therapy was my parental choice of school.]

 

Remember that you have to work to the legal requirements of the system. You need to know what that legal process is and work through it. If you don't you could end up losing a tribunal anyway.

 

Prior to that my son had "motor co-ordination difficulties" for which I was given "exercises to complete at home."

 

That is the difference.

 

The same applied with Dyslexia. Once I had that diagnosis he got a specialist dyslexia teacher for 3 hours 1:1 a week. Without the diagnosis he got nothing.

 

My son also did not get any OT input for Dyspraxia, until I wrote to the head of the OT service and asked them what the difference was between "motor co-ordination difficulties" and "Dyspraxia". I asked because the Psychiatrist said he had Dyspraxia and asked why that was not part of his educational programme because dyspraxia has mental processing elements to it which affect learning. And that his work would need differentiating and supporting for this difficulty.

 

When I sent the letter I got a reply 7 days later agreeing and giving the diagnosis of Dyspraxia.

 

It isn't fair that you have to pin professionals down to get the therapy or support needed. But without the 'medical' diagnosis it just does not happen. If you ask for it, as I did, I was told there was no written 'evidence' that my son had Dyspraxia, or Dyslexia, although they agreed he had that "type" of difficulties.

 

Provision is rather like a mathematical equation. And without the diagnosis you don't get the provision that diagnosis requires.

 

Here is another example of LAs and Tribunals. I was helping another parent get her child into an independent placement. She had found one and named it in her appeal. The LA, about a week before the actual tribunal, sent her a letter saying that her choice of school could not meet her sons OT needs. This parent therefore thought this meant the Appeal would fail.

 

Actually it proved that the LA could not provide his OT needs either. And what the parent needed to do was to find another independent school PDQ, which did have OT's on site who could deliver the OT provision her son needed. The parent made a change to part 4 of the appeal, on the grounds that the LA had now informed her that her choice of placement could not meet his OT needs, and therefore xxxxx school could.

 

She won the appeal. So you need all needs identified, and all provision quantified and specified. This adds up to the placement. You must find out and get a letter confirming they can deliver ALL the support/therapy detailed in your reports, and if they cannot you need to get additional quotes for an outside professional to be bought into your choice of school to deliver whatever it is that they cannot provide. In my son's case it was a specialist dyslexia teacher. So, the Tribunal Panel agreed he needed the independent placement, which is around £50K as a day pupil, and agreed a further £10K funding for a specialist dyslexia teacher. If I had not got quotes for that spcecialist teacher the appeal may have fallen through because I could not prove the independent school could meet ALL his needs. So you understand now why diagnosis, and a Statement which is a true reflection of needs is important?

Edited April 16, 2013 by Sally44

[bed32]

At the risk of a bit of a diversion. Our son sounds very like yours except probably less social concerns, but more anxiety caused by fear of failure (the dominant issue with him at the moment).

 

Many people with moderate AS live happy normal, or near normal lives in the community. It seems that they succeed by developing explicitly learned strategies to cope with the differences in the way their brains work; and in particular bright AS people seem to be able to use their cognative strengths largely to overcome the issues.

 

So the optimistic part of me thinks that if we can motivate him to think that way then almost anything is possible, and remaining in mainstream would work. At present the issues are as much about motivation, he refuses to engage because he sees no reason to and that makes it very hard to progress on anything.

 

We are hoping that the work with the Psychologist will begin to break down those barriers - if not then I don't know what will happen.

[babnye1]

Thanks. I am a lawyer. I am aware of the legal process.

 

I know you are trying to help but his needs are very carefully identified in a 14 page, very specific statement. The law does not require labels and certainly does not require labels where they are not appropriate.

 

He has had a very thorough report undertaken. He is not dyslexic and he does not have dyspraxia.

[oxgirl]

Hi Babnye1, sorry you and your son are having a tough time at the moment. Have you ever thought about home education?

 

I come at this from the 'other side' of the education world, my lad is now 19 and, thank heavens, finished with school. I feel for you, because I remember what a horrible, horrible dilemma you face. I was like you, in that I very much wanted my son to be able to cope in mainstream, but in the end it just wasn't possible. I think for some children the options are very limited; they cannot cope in mainstream and yet are too able in some ways for 'special' schooling. Independent schools have their appeal, but putting a lot of children together who have similar (or maybe very different) issues, with all sorts of additional behavioural problems thrown in, isn't always the best thing either.

 

I've said it before and I'll say it again now, if I'd had my time again re. education for my lad, I would have done it very differently. Of course, we can only see with hindsight what we maybe should or shouldn't have done, and sometimes when you have chosen a path for your child, it's easy to get stuck on it trying to make it work and praying that it will get better, when in fact another term and another year has gone past and it's been just as horrible and damaging as the last ones but you still feel compelled to carry on trying.

 

I'm sure none of that was helpful at all, but I do feel for you and please know that it will come to an end.

 

~ Mel ~

[babnye1]

Thanks for that Mel. I have HE'd before but I would be worried about doing that at secondary level as I don't know where to start! I work from home, freelancing, so as he gets older we could probably both get on with our work.

 

I need to look at some schools and see. I know there is no easy answer. He went into school for an hour today only with me. I asked him tonight if he could manage 5 mins in class with me and he said he would rather die.