So many questions :-(

[MrsMattie]

This is really long, but if anyone can take the time to read and reply I would be ever so grateful. Just after some advice, really. Feeling so confused and weary

DS is 4.10 yrs old. He had problems in his first nursery (when aged rising 3 yrs) and then in his school nursery, where he was put on Early Years Action, and then EYA Plus (after we approached a GP and got a referral to the Child Development Service). His problems then were: hitting/biting/pushing other children; 'not listening'; not doing as asked/told by teachers; throwing himself on the floor and 'acting silly'; having epic tantrums over small things.

At this stage we tried lots of things. Obviously he had an IEP, which we met regularly with the nursery to discuss. He also started seeing a learning mentor once a week in nursery. I attended a parenting course and we had several sessions with a Family Support Worker from the LEA. We really have exhausted every avenue we could think of over the past year in terms of trying to improve his behaviour. It got to the stage where I felt unwilling to blame it on being 'just a phase' any longer - he stuck out like a sore thumb in any group of children - and I instinctively felt there was more going on than just 'bad behaviour'. Although the nursery were reluctant to say anything concrete, it was obvious they thought so, too.

Since the summer, we have got the ball rolling with referrals outside of school. He was seen by the Comm Paed initially in June. She referred to CAMHS, who we saw in Sept. DS started reception in Sept, and CAMHS came in and did an observation in Oct. CAMHS referred him to a SALT for problems with social communication (he is highly verbal and a fluent reader, so he doesn't have traditional SAL issues). I already feel like we are being pushed from pillar to post, and the reports from these appointments always seem so very vague and so very short, I am left feeling disappointed and desperate for some sort of actual, real help.

Meanwhile, only a term into reception, his behaviour is causing real problems at school, and I am terribly worried about my DS. He doesn't seem to go more than a few days without a major incident - pushing a child from a climbing frame, cutting another child's hair, throwing a brick at a child's head. I know my DS and I know what leads up to these behaviours, although I don't know what causes it. He cannot seem to cope with group settings, or with communicating / listening when the interaction involves more than a one-to-one. So he is fine if he is sitting down with an adult. He is better (although not great) when the interaction is him and one other child. Any more people than that, and he cannot cope and becomes 'silly' and eventually aggressive. He finds lots of situations very stressful, but because he is a bright, verbal, handsome boy, people can't always tell. However, I can. He starts clearing his throat obssessively and has almost Tourette's like tics - flapping his arms, burying his face in something nearby (a sofa, my legs etc) and making a sort of shrill screeching sound.

The situation has reached breaking point for me on Friday, whe he was excluded from the school theatre trip for persistently pushing, hitting, throwing things around etc - and spent the afternoon with the nursery children. The really sad thing was that when I picked him up, he didn't seem to care. Or rather, he was unable to express his emotions. He put a fake sad voice on and said 'It was really sad, I wasn't allowed to go', but he didn't seem sad.

I am just despairing. Honestly. Am i just a really shit parent, or is there something wrong with my boy?

I am so confused. The school are supportive and seem proactive, but I am just not convinced that a simple 'praise the good, punish the bad' approach is going to work. Things like the naughty step have had zero effect on DS - I have learned this the hard way. He has been internally excluded several times already and is taken up to see the Headmistress at least once or twice a week. It doesn't seem to be having any effect at all. I am not happy about this and have let the SENCo know, but I can see his point, which is that they want to be totally inclusive of my DS but when he puts other children's wellbeing at risk they have no choice but to remove him from the setting to 'cool off'.

So what do I do?

The SENCo is talking about statutory assessment, and Asperger's / high functioning ASD has been tentatively mentioned.He is now seeing a learning mentor in one-to-one and group settings three times a week. On the plus side, the school are good communicators and we are in daily contact with his reception teacher (she gives us a report on how he's been each day) and weekly contact with the SENCo. We also have monthly review meetings with both. At the last meeting the SENCo outlined all the measures they were taking to help our DS. They are being really proactive. They have had a teacher from a local special school (ASD) in to observe him and they are in regular contact with her for advice. The High Incident Support Team has been in from the LEA, and a teacher from another year who's son has Asperger's has been in to observe DS and advise his teacher on strategies. They have also paired up my son with a buddy - a Year 6 boy, a real friendly giant - who shadows him at lunchtime (as this is one of the times when his behaviour really falls apart).

The fact remains that he doesn't have a diagnosis.

I mentioned Asperger's to the Comm Paed at our review appt a few weeks ago and she went through the criteria for diagnosis and said that we may have difficulty getting a DX as he doesn't meet enough of the criteria. However, she said she felt that the referral to a SALT was an indirect way of CAMHS saying that they also had suspicions along the lines of an autistic spectrum disorder and wanted it confirmed, so we should wait and see.

I fed this back to the school and they said we should wait to see what the SALT says, as they may provide ammunition to a request for a stat assessment (Our LEA are notorious for turning down first requests, and for rejecting requests which don't provide enough references to professional opinion). The school are definitely angling for a statement, is my feeling.

I am meeting the SENCo next week to discuss all of this and how we proceed. I want to know what the school 6want^ out of a statement - what additional hours / support etc do they feel they need to be able to cope with my DS, so that he is not spending half the day 'sitting out' or being sent up the Head's office.

I am rambling now. Sorry. What would you do? Should I be pushing for a DX? We could afford a private one if that would help? Should I apply for a stat assessment myself (the school will support it, as will CAMHS)...should I wait for the SALT appt? What the hell am I supposed to do? I am so sick of my little boy being the naughty kid in the corner.

I'm sorry that was so long. I think I'm going to go and have a good cry now

Hi MrsMattie

You could have been describing my son at that age.

A SALT cannot dx - only CAMHS or a Paed can do that. So time spent waiting for SALT's views will not lead to a dx (but may provide evidence needed for the diagnostic process).

Definitely push for a Statement. Best to get school to do this. If school is turned down then you, as the parent, have the right to appeal against the LEA's refuseal to assess for the possible need for a Statement.

The behaviour you describe that my son also did was eventually was put down to not understanding social situations / social cues, anxiety in social situations because of his lack of understanding and also lack of empathy / failue to be able able to communicate appropraitely due to him having aspergers Syndrome - however there coudl be other causes for your son's behaviour which the dx process may uncover.

So, I'd push school for a request to Statement and CAMHS for a dx.

If you want to go down the private route the NAS helpline can give you a list of private psychaitrits / psychologists in your area.

Best wishes

Hi WetAugust. Thanks so much for taking the time to reply.

I feel like I am getting conflicting information from every professional I meet. The Comm Paed said that a SALT could diagnose. CAMHS were next to useless, too, it has to be said. Their reports said literally nothing. They were like very simplistic descriptions of his behaviour on that day, with no insight.

I just find this whole thing hugely frustrating.

So, you think the school should make the request initially, then? The SENCo did say he'd be happy to do it.

What do they look for in a request? I was advised by another parent (who lives in a different area) that you just write a simple letter requesting assessment. However, the SENCo said our borough would want a detailed report from him and probably something from us supporting it, with reference to the reports from professional we have had hitherto.

sorry you are going through such a stressful time. I would get in touch with your local NAS branch/ASD support group to find out how the diagnosis process works in your area, to see who your DS would need to be referred to. I think it's usual for diagnosis to be a multi-disciplinary approach -.e.g. in my area it's in a joint clinic with paed, ed psyc, and salt, I've never head of salt on their own being able to diagnose.

in terms of what they are looking for in a request - I would be inclined to go with your senco's recommendation to give lots of info at this stage (unless it's going to cause a massive delay), as it should save time in the long run if the LEA don't knock back the initial request for assessment. have you got any idea of how long SALT are going to take to see him yet?

Hi Mrs Mattie,
Have you thought about Auditory Processing Disorder? Your DS does sound a lot like William who lives down the road from us. He has been recently diagnosed and has been given a hearing loop to use at school and it has totally turned his behaviour around.
Its not a hearing 'loss' problem, but more a hearing differentiation thing and an inability to pull sounds apart when there is more than one voice/background noise etc.

I'm not dismissing the thoughts you have about ASD, but that maybe this is an issue as well?

Hi MrsMattie

In answer to your question about how much information you need to give the LEA when requesting an assessment...

School should apply themselves to the LEA for an assesment if they think he will require a level of support that school themselves cannot provide. Otherwise the LEA will expect the school to provide the support your son needs without applying for a Statement.

However, it's only by going through the full Statementing process that a full picture will be built up of your son's difficulties, possible explanations for what causes them an details of what support he will need to overcome them. Also, the school are only legally obliged to deliver the support that is stated on a Statement - so without a Statement any support given by the school can be withdrawn at any time.

School in requesting a Statement assessment would write to the LEA detailing your son's difficulties and all the starheies that school tself has attempted to provide. The LEA will then deicde whether or not to asses. If they go ahead then Ed Pysch, Paed and other 'professonal' reports will be called for from people your son is currently being seen by, such as SALT, CAMHS etc.

Once the LEA have received all these reports they will decide whether a Statement is required.

If you chose to apply for an assesment yourself directly to the LEA you should give in your letter some indictaion of why you think a Statement may be required. If you look on the IPSEA website there is a standard letter that parents can use as a template to write to the LEA. You can also request that the LEA seeks information from anyone you care to name i.e. CAMHS etc.

Schools can be reluctant to make Statement requests as Starlight said above it's all to do with 'politics'. Schools answer to the LEA. so they are reluctant to seek (expensive) Statements that their 'employers' the LEA would have to fund. So don't always think that schools know best - they don't.

You're probelms appear to be long-standing and it would be useful if you got yourself a copy of the SEN COP (free) so you could swot up on what schools and the LEA should be doing for your son. It also explains the Statementing process.

Ed Pyschs and SALTS cannot issue a formal dx. For that you need a Paed / Psychiatrist/ Clinical Psychologist.

Best wishes

Thanks so much for your replies.

I am definitely going to comtact NAS and IPSEA. I was offered a leaflet about the Parent Partnership by the SENCo at our last meeting, but my GP looked sniffy about them and said 'they are in cahoots with the LEA, so wouldn't rely on them..' Is that the case in your experiences?

So, if he's not actually being assessed right now, what are these professionals doing? What is the end result of seeing the Paed, CAMHS, the SALT etc?

Right, trying to get my head around this. So my next step should be to chivvy the SENCo along in requesting a statutory assessment? He is just waiting to hear from us, to be honest. And you definitrely don't think we should write it - you think it should come from the school initially, yes?

Oh, and what is a SEN COP?

Thanks for all your advice, ladies. Absolute God send.

MrsMattie

Your GP is quite correct about Parent Partnership.
They are supposed to support the parents of a child with SENs however they are funded by the LEA and our PP is ceratinaly in cahoots with the LEA - so you cannot count on them being truly independant.

SEN COP - Special Educational Needs Code of Practice - this is the 'bible' on all matters SEN that schools and LEAs must follow. Any parent can phone the Dept of Ed pulblications line and order one. It's invaluable to help you understand the Statementing process and what school should be doing to assist your child. Schools /LEAs will not tell you about the SEN COP but they will certainly sit up and take notice when you start to quote from it chapter and verse

I think you're beginning to realise that unless you are in the driving seat all these disperate agencies will be happy to muddle along in their uncoordinated way and your child will suffer - unfortnately it's us the parents that are forced to take control and drive the process forward.

Best wishes

Mrs Mattie,

I honestly think your son has additional needs and to date they have not been met by the school hence all the problems he's had (I am not totally surprised in the circs, have read many such instances before and these have all come about because of dithering by the pros and system designed to help children). You have done a fine job of parenting with your son to date, it is not your fault that this has happened.

SEN COP I believe is the Special Educational Needs Code of Practice booklet.

I would be making the request for the Statutory Assessment myself as you know its been done then. Some schools can sit on these things for ages.

Another reason for writing the initial request yourself (and it does not need to be too detailed, have a look at the letters used on IPSEA's website) is that if the school write to the LEA and the LEA say no, the school CANNOT appeal. Also some schools are really crap at writing such apps. If you write and the LEA say no you can appeal their crass decision. Parents have far more rights than school ever does in such matters.

Seek independent advice from organisations like IPSEA and or SOS;SEN when applying for the statement and throughtout the statement process. Parent Partnership are not always independent of the LEA involved and can tow the party line (for instance my PP works out of the same office as the LEA).

SALT etc cannot make any diagnosis. Only a developmental paed can.

You do not need a dx to apply for a Statement. Do bear in mind though that these things can take six months to set up once the LEA agree to assess. The task here *(one of many) is to convince them that your sson needs such an assessment.

ED Pysch can only make recommendations re schooling. Their words are important and they have clout, however, as they work for the LEA they are under increasing pressure not to statement readily.

www.ipsea.org.uk

Mrs Mattie

You as well are your child's best - and only - advocate. You need to kick butt firmly with these people otherwise they will have you going around in circles for years to come.

Do consider personally making the request to the LEA asap for the reasons I have stated. If you do on the other ahnd get school to do this (and I strongly suggest you do not particularly as it is now only three weeks till the end of term so they'll be winding down for the festivities) you must have a copy of the letter they send to the LEA. If they are not prepared to give you this, make the request yourself.

If you make the request you need to write to the Chief Education Officer at your LEA and give him six weeks to reply.

LOL, - Mrs Mattie. Don't be afraid at our agression and frustration on your behalf. We are your friends.

One step at a time.

I don't know much about this but do have a son who is diagnosed with dcd, the process of getting a diagnosis is a long and often tedious one, but don't give in, it sounds like your son has additional needs that need to be met and you are the only one who can fight his corner, don't give up and don't question your own parenting as much, keep your chin up as you eill get there

Thanks again, all.

Starlight - I'm in Barnet.

Yes, GP = doctor. How much are we talking for a private diagnosis? And who am I going to - a Psychologist? Can anyone recommend one? I have no idea where to start. We aren't minted and DS attends a local state primary, but I have some savings and would be willing to spend on this.

Thanks re: SEN COP. I'll order it tomorrow!

I realised long ago that things only get done when I get on my high horse, but I have been playing a wait and see game since he started reception, as I hoped things might improve. Time to go full steam ahead again, methinks.

It is just so helpful to hear all of this experience and advice. I am in tears as I type .

You know, I would feel better if I wrote the request for assessment myself. The Paed said we know our son best and can give the most accurate picture of his needs. She gave me a handout she has made with all the SEN educational jargon in it and told me swot up and drop plenty of it into my letter . She said what the school need to be clear about is what help they are asking for - what support does my DS need? - because my LEA are very keen on hearing what exactly you're asking for rather than a general moan about how badly your child is doing.

Dr Daphne Keen (Oxford Circus) is a well respected NHS Paed with a Friday clinic. Waiting times are around 6 weeks. She will set you back around £700 for two hours plus 5-6 page report. It will mainly be a parental interview but she'll have to see your ds obviously.

Because early intervention is key, think of it as an investment I suppose. It did damage to us, but we thought not doing it would cause more damage.

In your application you have to spell out why your child's needs cannot be met by provision a school is normally expected to give.
Do this in terms of need rather than slagging off the school iygwim. An obvious one would be the level of supervision your ds needs for the safety of others as well as himself. Don't be afraid of showing very high expectations of them and never ever believe that something isn't possible. Getting provision now, however expensive can save you and the LA vast amounts later on. Also, you'll have to deal with the consequences of not getting enough support when your ds reaches 16, not these people who you are dealing with now.

Don't worry too much about getting it perfect. There are quite a few opportunities to have your say and your view might change as you learn more from the assessments.

Starlight x

You can ask for a statement on the basis its necessary to work out what the needs are - see IPSEA info - look at their appeal pack as it actually has more useful info than the bit about the original application. The school gets a budget delegated to them and are supposed to put in 20 hours a week 1:1 without a statement - you get a statement if you need more than 20 hours. So if your child is not getting 20 hours 1:1 teaching assistant time then I would start right there when kicking up a fuss - point out danger to other children if not provided. Is there any possibility of your child going part time? Might reduce anxiety levels. Apply for the statement yourself - but the school will need to show what they have done already and that 20 hours is not enough. Also look around at other school options including private in case things don't work out - there are ASD specific schools in Muswell Hill (Treehouse) Crouch End (Kestrel House) and (Welwyn (Chrysalis)

I would not even suggest the possibility to the school of going part-time. That just makes their life easier for them while denying your son the help he needs. There is plenty that can be put in place to reduce anxiety levels while permitting him access to full-time education.

No, you should hold out for whatever help you think he needs to be able to access fulltime eductaion.

How they manage that is their problem - not yours.

Mrs Mattie

I think you know this already but that LEA is pretty awful and penny pinching (have friends who live in that area and she knows the LEA well from a SEN point of view).

If you feel better penning the request for the assessment then do so. Have a look at IPSEA's website; they have model letters on there you can use and its very user friendly.

Dry your eyes and start typing!!.

"The school gets a budget delegated to them and are supposed to put in 20 hours a week 1:1 without a statement - you get a statement if you need more than 20 hours"

I laugh wryly at the above. I'd love to know how many schools can actually manage this because I think the number is very low indeed.

My son has always received less than 20 hours and he has a Statement doc to his name so it is possible.

The part as well where it says "you get a statement if you need more than 20 hours" smacks of blanket policy and is thus illegal in law.

This is an example of delegated funding which many LEAs are wont to do these days as it saves money. It is bad news indeed for children who need statements and IPSEA have made several complaints to the Secretary of State re such actions by LEAs.

Mrs Mattie do not offer your son to go part time, would fully agree with WetAugust here. Your son has as much a legal right to an education as anyone else, you're going to have to get this fully enshrined in law though via a Statement. Basically nothing short of a Statement now will cut it, Early Years action plus or whatever its called these days is not legally binding and can offer only limited support.

Tip: If you do apply for an assessment for a Statement youself make sure you describe his needs as complex and use the fact that he has been excluded (because of his disabilities) to state that he is unable to access full-time education*.

Also add the fact that the assessment is required to fully identify all his SENs and ensure they are adequately supported.

Also, you can describe his difficulties as long-standing