To apply for a statement or not?

[Toffeefudgecake]

How do you know?

My son (11) has been off primary school since February, suffering from extreme anxiety. I am home educating him for the moment, although he is still on the school register. He is dyslexic, has OCD, tics and Asperger-type characteristics. However, his only diagnosis is dyslexia. Today, we saw a psychiatrist, after waiting four months for a referral, and she referred to him as having a 'mixed developmental disorder', which means he has a bit of everything, without being diagnosable. She has suggested he start taking Prozac and have CBT in order to help him to cope with his anxieties and start at secondary school in September.

How do you decide whether to apply for a statement or not?

The head said it would probably be very difficult without a diagnosis. Maybe DS will cope well enough on School Action or School Action Plus, but I just don't know.

Ummmm. If he's been off school since Feb then he's not coping on School Action or School Action Plus.

In your case the decision to apply for a statement is a no-brainer.

He is not able to attend school due to extreme anxiety.......

Most schools haven't read the SEN-COP. Only the local authority version. But it's the SEN-COP which legally applies.....

So go for it. Today.

Good luck.

How is he at doing with home-education? Is he less anxious? happier?

I agree with IndigoBell. If you intend that he should return to school (rather than continuing with HE) then you should apply for a statement now.

Home education can be a good option but I realise it isn't (possible) for everyone.

TheDuckster - he is happier at home, but he is still very anxious.

IndigoBell - What is the SEN-COP?

I don't know what help I'm meant to be asking for. DS would hate to have one-to-one help. He just wants to seem normal, poor boy. But what he needs is perceptive people around him who 'get' him, plus the option to get out of situations he finds stressful. He did best with a perceptive teacher and a TA for his class who understood him and responded to his difficulties. How do I explain all that? I feel overwhelmed by it all.

To order a copy of the SEN Code of Practice, DfES 581/2001 telephone 0845 6022260 or email [email protected], quoting the DfES reference number above.

guide

Mixed developmental disorder will do fine as an interim diagnosis. She's not saying there's nothing the matter, or it's 'just' a parenting or behaviour issue. In a way, a vague dignosis might help as you can insist his needs are individually considered (rather than he be treated as a 'typical' asd or adhd or ocd child

and if he hasn't coped with a minastream junior, and wouldn't like a glued-on TA at high school, you need to start looking at units within mainstream secondaries plus small independent schools which have expertise or specialise in children with special needs (there are quite a few, and it is sometimes cheaper or more effective for the LA than putting enough individualised supprt into a regular high school. guide

oh and one more thing, definitely do not de-register him, as his anxiety then stops being the LA's problem. In the unlikely event that the education welfare officer mentions court, suggest they bring it on, as that's a good way to get a fair hearing.

Thanks for the info, Maria. I don't really understand why the psychiatrist won't consider diagnosing. Whenever DS fitted the criteria for anything, she nodded, but wouldn't say, 'yes, he's this/that/the other'. Don't they like to commit themselves or something? But it's good to know that a vague diagnosis might be a good thing.

I agree with you about de-registration. It was actually the head of his primary who stopped me deregistering and it has been a life saver. It has meant I can continue to access help and support from his school.

OK, DS could not get to secondary school 'taster day' today because he was too anxious. And when I say anxious, I don't mean it in the way all the other children would have been anxious, I mean 'hiding in cupboards curled into a ball, trembling and wanting to be sick' anxious .

I'm going to apply for a statement, though I am not expecting it to be easy and I still don't know what I should be asking for. Is there anyone who can guide you through these things or do you just have to do it on your own? I am going to meet with the SENCO at DS's primary school and am hoping that she can give me some help with it. And I'll also ask DS's secondary school for advice.

We are seeing the psychiatrist again tomorrow and I will ask her advice about what provisions DS should need to enable him to access school, other than Prozac, which is supposed to be a short-term measure. We are also meeting with a dyslexia tutor/specialist and he should be able to advise us too and contribute to the application for a statement.

Maria - it's encouraging of you to say that DS's vague diagnosis may help him receive more specific help. That's what I need right now - a positive viewpoint!

you could make a phone call to parent partnership they where helpful to me. there number will be on your local LEA's website.

Thanks, Utah. I'll look them up.

Hi Toffee, I agree with the others that you should apply for an a statutory assessment for a statement straight away - it takes about 6 months for the whole process sometimes more so it won't be in place for him starting secondary but it will flag up to the school that he will need a lot of extra support and some of it they may be able to put in place from their own resources during the assessment process. Also absence from school due to anxiety is an accepted criterion in itself for the need to assess for a statement.

My son was in a similar position to yours a year ago although he was a year older when his school related anxieties came to a head. He started refusing to attend school and having panic attacks half way through his first term at secondary and was then out of school for 15 months before he got a place at a much smaller special school with mainstream curriculum. His issues - like your son he has a mixed bag of diagnoses and possible diagnoses - haven't gone away but he is a lot happier and can cope with school.

The psychiatrist you saw spoke about CBT as being possibly helpful. I can only speak from our family's experience, but our ds found CBT really helpful in making sense of what he was feeling and in achieving some sense of distance from his feelings to the extent where he could recognise that some feelings were not in proportion to the situation and where he could use strategies such as positive thinking and relaxation techniques to help him cope in difficult situations.

Another big positive about the cbt which I hadn't anticipated was that they (CAMHS) insisted on doing a full cognitive assessment beforehand so that they could make sure the cbt was tailored to his particular strengths and weaknesses eg things like concentration span, visual or aural learner. That assessment was useful evidence his statement and informs a large part of the content. It was much more detailed than anything undertaken by the LEA ed psych - although in our case they too were professional and helpful just constrained in what they could recommend. Given that your ds' needs are not clear you could push for this assessment to be done - the one used for my sone was the wisc iv - wechsler intelligence test 4, I think.

Maria is right about how useful it is to get a copy of the sen code of practice to know exactly what happens during the statement process and crucially what everyones rights and responsibilities are. You can download it here:www.education.gov.uk/publications/standard/publicationdetail/page1/DfES%200581%202001 but it is also worth ringing up to be sent a free copy as it is a very long document (book).

The other piece of legislation that is crucial for you in your situation is this:www.education.gov.uk/publications/standard/publicationdetail/page1/DFES%2f0025%2f2002. Your ds is entitled to home tuition as he is unable to attend school because of a medical need - which covers school related anxiety of the type you describe. You will need to ask the psychiatrist you saw to write a supporting letter confirming that it is extreme anxiety which is preventing your ds from attending school. Your LEA will have a tuition service aimed at home schooling long term sick children/pregnant schoolgirls. In our area they are called AlCHOOS - ALTERNATIVES FOR CHILDREN OUT OF SCHOOL. Schools should know about this but often don't. The statutory minimum a child is entitled to is 5 hours per week, in our experience this was also presented to us as the maximum they were entitled to. We didn't realise this was illegal and untrue until stumbling accross the document above after a lot of googling. The law states they are entitled to as much tuition as is necessary to meet their educational needs and that the only restraints should be those imposed by the child's medical needs. Note nothing about budget restraints in there.

Good luck with it all.

Pink - thanks so much for such a thoughtful, helpful message. I had no idea that absence from school because of anxiety is in itself a criterion for the need to assess for a statement. In fact, we have just finished a long meeting with a dyslexia tutor who rather put me off the statement process because he has seen so many parents go through the application process without success. However, he is only thinking of dyslexic children, whereas my son clearly has other issues going on.

Am meeting with the psychiatrist again in half an hour, so I will come back and read your post properly later. Thank you. It's good to hear from someone who has been through such a similar experience (and I'm glad to hear that your son is so much happier now).

Toffee, you are welcome - I hope it helps. I know it is a worrying and isolating time if your child can't or won't go to school as others on here can testify.
Ch 7 of sencop deals with when to decide to assess for a statement. See points 7:43 and 7:65 for some references to absence and impact of medical conditions. Your lea or county council website may also have documents describing their own criteria for assessment. If not you could ring up and ask them for any relevant documents.
Just wondering what you know about the secondary son your ds is due to attend in september - does it look like they can meet his needs. How does your son feel about going there compared with his current setting?

Update: DS has been diagosed with Tourettes, OCD and social anxiety. I had a meeting with the Head of Special Needs at his secondary school on Tuesday and she told me that he stands very little chance of getting a statement. She said that the thinking is that if a child doesn't get a statement in primary, then they can't need one in secondary either . They will 'observe' and 'assess' him themselves when he starts school, but she really tried to put me off expecting them to start the statementing process.

Someone told me not to worry because she was just trying to put me off and that it is still perfectly possible to get a statement in secondary.

Pink - sorry I didn't ever reply to your last post. I think I missed it. In response to your question: I'm not sure now if the school will meet my son's needs. They are refusing to allow him to use a computer for his school work, which is what the private educational psychologist report recommends (I know they are not legally obliged to follow that). They say it is 'school policy'. In fact, they want to give him handwriting lessons instead. They are also refusing to allow him a yellow card which would give him the option of leaving class if he feels too anxious. They argue that the learning-support teachers will be sensitive enough to see if he is anxious and take the appropriate action. However, DS can hide his anxiety and is too proud to ask for help. He will suffer in silence, then refuse to go to school the next day.

However, everything is geared up for this school now, so I think we have to go with it and prepare to fight if necessary.

Toffee

re your comments:-

"Update: DS has been diagosed with Tourettes, OCD and social anxiety. I had a meeting with the Head of Special Needs at his secondary school on Tuesday and she told me that he stands very little chance of getting a statement. She said that the thinking is that if a child doesn't get a statement in primary, then they can't need one in secondary either . They will 'observe' and 'assess' him themselves when he starts school, but she really tried to put me off expecting them to start the statementing process".

Your son clearly has not managed just on SA plus. Its main pitfalls are that the support offered on it is too limited and it is also not legally binding unlike a statement which is.

If I had £1 for all the times I've heard similar from schools I'd be quite wealthy by now!. Its all BS designed to put parents off from applying. Ignore the naysayers and make the application for the statement asap. IPSEA's website is good re the whole statementing process and has model letters you can use www.ipsea.org.uk.

"Someone told me not to worry because she was just trying to put me off and that it is still perfectly possible to get a statement in secondary".

Indeed. I know of someone whose child now has a statement and only applied for it when in

With regards to your response to Pink:-

"In response to your question: I'm not sure now if the school will meet my son's needs. They are refusing to allow him to use a computer for his school work, which is what the private educational psychologist report recommends (I know they are not legally obliged to follow that). They say it is 'school policy'. In fact, they want to give him handwriting lessons instead. They are also refusing to allow him a yellow card which would give him the option of leaving class if he feels too anxious. They argue that the learning-support teachers will be sensitive enough to see if he is anxious and take the appropriate action. However, DS can hide his anxiety and is too proud to ask for help. He will suffer in silence, then refuse to go to school the next day.
However, everything is geared up for this school now, so I think we have to go with it and prepare to fight if necessary.
secondary school (got put off unnecessarily in juniors)".

I would not go with actually sending him to this particular school at all. There must be an alternative, surely?. I'd also completely forget this school to be honest with you because they're being unhelpful now and a big impersonal secondary school could be nightmareish for him (my son is at secondary with a statement and they are very different from primary schools). I would find a more welcoming school, don't send him somewhere like this because he'll likely sink under the pressures. A poor school experience impacts on both learning and family life to its detriment; that also needs to be considered.

Attila - thanks for your advice. Why do SENCOs try to put you off applying for a statement? I thought they were meant to be there to help your child . My son's SENCO at primary school was forever telling me my son's needs weren't severe enough to warrant an appointment with the educational psychologist. Meanwhile, DS spiralled down and down.

I really think I need to start getting more assertive. So far, I have managed to be politely insistent, but it clearly isn't working.

Re: "I would not go with actually sending him to this particular school at all".

The only alternative is a school a bus ride away and I can't see my son coping with that at the moment (he is too anxious to go on public transport and I don't drive. And even if I did, I wouldn't have the use of a car in the daytime). This school is walking distance. Plus all his friends are going, so he will be able to walk to school with people he knows and he will have familiar faces around him at school.

Originally, I had planned to send him to the other school because it is meant to be more welcoming for children with SNs. However, neither we nor DS were very impressed when we visited for the parents' evening last year. On the other hand, DS loved the local school, which has excellent facilities and outstanding teaching.

My son's dyslexia tutor has given me the email of a parent at the school who is also having a fight to get the school to let her son use the computer, so another way of doing it may be for us to get together and start putting pressure on the school to change their policy. The SENCO did also say this policy may be reviewed after they had completed a study on it .

I don't see that we can back out now. I think we have to keep going. Apart from anything, my son has made his mind up that he is going there and that is a good incentive for him. But if he can't cope in the new school, I will have no hesitation in taking him out and keeping him at home again until I can find a school that suits him better.

Re: 'make the application for a statement asap'. The local education office won't accept statements during the summer holidays. The whole process starts up again in September. That gives me time to read up on it all and make the application myself if the school are still being unco-operative.

Presumably, if the statement said my son had to use a computer for his work X hours a week, the school would have to co-operate with that, no matter what their policy is?

Thanks for the link to the model letters I can use, btw. Very useful.

Listen to Attila and and toffee, they are right. My son has no diagnosis and does not sound as bad as your child but he has a statement. This is after I was catagorically told by the school and ed pych that he would never get one. The head actually went so far as to tell me there was no way they would support an application for a ststement as they didnt feel he had any problems. (He'd only been there a week at this point, I applied for SA before he started). I was initallt turned down for sa and have had to start tribunal proceedings to get there, but get there we have. I have learnt though that the lea will absoloutly not given anything they are not forced to, and it really is a case of 'he who shouts loudest'. It is very wrong, but saddly the reality in most areas.
Regarding the LEA accepting. I don't think the can refuse but they may be able to not count the holiday period. Even so I'd try and get it in asap.Don't let anyone put you off.

And yes whatever is on the statement the school and lea have to do. They also cannot simply ignore the advice of professional. A statement really is the only way to ensure that professional advice is followed.

Thank you, Feynmann. That is very encouraging to hear. This may be a silly question, but how did you know not to listen to the school and ed psyc? I am finding it hard to go against the advice of the professionals. It goes against the grain somehow. I have to fight, though, don't I? And somehow have the confidence to know that I'm right and they are not.

My son was already seeing OT and SALT by that point and his previous nursery were flagging up concerns. I also have a much younger brother who has similar speech difficulties and asd, so have sort of been through the system with him, both as a child and adult. But I think the most important thing is to go with your gut feeling.
If it helps, I'm a secondary school teacher and we have many children who sadly fall through the system as without parental support the lea often turn down our requests for SA's (and school will only make these in really severe cases). It is really heartbreaking how little support some of our most vulnerable children get. If your son were mine I would be applying without question, but it will be a battle. My son's preschool senco had absolutely no idea and I know from conversations I've had with our senco she believes that some students cannot get statements because that is what she's been told by the lea. Some of the things she's told me are totally wrong but she genuinely believes them as this is what the LEA say.

Toffee unless you are dealing with someone independent they are employees of the LEA (I use to work for the LEA). Also the school will be required to fund the statement out of their SEN funds up to a set point before the LEA will top up if needed it is not in their interests for your ds to have a statement unless it is a low incident(most complex needs with high hours/care) that the LEA will fund depending on where you live and their systems. Before the internet forums what the LEA said went as parents knew no better but as parents have become more knowledgeable the LEA have had to become more ruthless to keep the budgets but this is not your problem/or your sons it is theirs. You have nothing to lose by applying and if anything it show you are willing/going to fight for what your child deserves.

Feynman - so the SENCO believes what the LEA tell her? That makes perfect sense. Then they are not on 'our' side at all. The SENCO at my son's primary school was new to the job when my son started there. She was unprofessional enough to tell a mum of a child with autism that she "knew nothing about autism". She always turned up to meetings late and had to leave early. She had never prepared documents beforehand. When a pupil was diagnosed with TS, she knew nothing about the condition. You would think, wouldn't you, that a SENCO would read up on the most common SN conditions? What she is good at, apparently, is filling in the paperwork for the LEA and they love her.

It is very useful to hear your view of the situation as a secondary school teacher. It really helps. It's awful to know there are so many children failing thanks to lack of support and parents who don't know how to help them, though. It's very sad.

Utah - thanks for that information. It's all beginning to make sense now.

how did you know not to listen to the school and ed psyc? I am finding it
hard to go against the advice of the professionals
Toffee, whatever you ask for, it will cost money. The LA does not want it. Schools, SENCOs, headteachers, edpsychs work for the LA, so chances are they will not want it either. If you want your DC statemented, it is you who has to push for it.

"If you want your DC statemented, it is you who has to push for it."

AllieZ - I'm beginning to see that. For a dizzy moment, I thought the school was going to handle it all. I obviously have a lot to learn. Time to get more assertive and develop a thicker skin.

(It's dreadful, btw, that it all comes down to money).