No confidence in interventions so far

[BerylCole]

This is so long, but it is really stressing me out and I need to know how to approach this...

We started the process of assessment with our (now) reception age child in Jan 2009 after nursery flagged up some concerns (which we shared, in fairness). In a nutshell: very bright boy, fluent reader from age 3 yrs old, but struggles with some social situations - can be aggressive and violent to other children, has enormous meltdowns over very small things, extreme need to win/be first/dominate, completely unable to deal with any kind of authority; anxious and behaves in a strange way when he is feeling stressed (almost Tourettes-like symptoms of twitching and making involunatry noises and movements when under stress).

The nursery teacher (and wider school in general) has been supportive over the last year, however, it's all been a bit wishy washy, with poor communication ('forgetting' to tell us when he has had someone coming in to observe him or to give feedback on his progress to us; no real follow up after meetings etc).

So far, the nursery have done the following:

• got someone in from a special school that deals with ASD to observe him (she wrote an illiterate, illegible report that didn't draw any conclusions, except that she didn't think he was autistic or Asperger's etc)
• had a couple of meetings at our insistence with the Inclusion Manager (new name for the SENCo) who is nice enough, but wooly
• Drawn up an IEP which I only actually knew existed and got a copy of at the end of last term.
• Apparently, a learning mentor was booked in to come every other Weds and spend one-to-one time with my son, but in reality this only happened twice (she was 'busy').

This was all frustrating, but when I saw his end of term report - very harsh, damning, hardly anything positive said about him - I felt furious. It's all very well criticising a 4 yr old, but what are they actually doing to help him?

What makes it worse is that the 'intervention' we have arranged independently (on advice of the school) has just made me feel even more confused...

Firstly we got a GP Referral to an Ed Psych. Our GP thought DS seemed extremely bright (said she was 'astounded' by his reading and speech) and wondered if the school were addressing this (they aren't, really...not so far anyway). When the appointment came through, it was with the Community Paediatrician, not an Ed Psych. She did an assessment of DS at her office and subsequently wrote a report which didn't really say much - said he's fairly bright, not massively advanced, seems anxious, blamed a lot of it on my PND after DS was born . She said she wanted to refer him to CAMHS but would like to see us again. We never heard from her again, and when I chased it up, I was told we had now been passed on to CAHMS and she could no longer see us.

Had the appointment with a psychotherapist at CAMHS today. It was painful. They told me and DH to both come along with DS. We then had to talk about DS's 'problems' in front of him in language he could understand. I felt totally patronised and really uncomfortable about DS being exposed to all of this. I also felt the psychotherapist guy just didn't get a full picture of DS at all. He cut me short constantly and because of the weird atmosphere - trying to explain complex issues in front of my child in simple language - so much didn't get explained. Apparently, someone from CAMHS will now come and observe DS in school when he has settled in to reception.

I just have NO confidence in any of these people to help my son, if the truth be known . They just all seem so completely flaky and patronising.

My Ds starts reception next week. This morning, we have a drop in session at his school and I am going to try to pin down his new reception teacher to a time to have a meeting about my DS's issues. However, I am pissed off that they havent seen fit to arrange this. Nobody seems to give a shit but me

I dont know what this rant is about, really. I guess I just want some advice on how to proceed from more experienced parents of SN (or possible SN) children....

desperate bump

Hi, my ds is 9 now (ASD) and is happily settled in a special school, but we had this with a billion different people observing him and no-one actually doing anything! What really bugged me was the lack of communication between the proffesionals and I REALLY hated if someone observed ds without me knowing - not even sure that should be allowed! Also hated having to talk about ds when he was there and the constant feeling of being judged.

School should have arranged to see you before term time but I'd do as you planned and go in and see the teacher (any chance you can get the senco in on it from the start?) Don't know what your senco is like but probably worth reminding her of your presence every so often, ours was leaving the school and seemed to 'retire' a few months early! (sure they aren't all like that though). Don't know much about CAMHS as our situation came to a head in the end and ds got a statement and moved schools v. quickly. One thing that has proved useful is a home-school book, where teachers write anything of importance like meltdowns or appointments and you do the same - helps keep communication going and is sometimes easier to write it down than catch the teacher and talk in front of everyone.

Hi Beryl. I can sympathise with the frustration of that limbo land where nothing constructive is happening! We had similar frustrations when ds (now nearly 10 with LD and ASD) was 4. Basically what I learned is that there is generally a lot of resistance (waiting about, ineficiency, waiting to see how child matures)in the both the health and school systems!! It is best to take charge as much as you can (and it sounds like you are already doing this ). It is very hard to get support for a child in school(even if it is clearly needed) so it pays to be persistant organised and knowledgeable.
Organising a meeting with the teacher and coordinator /senco is the first step.
Now for medical appointments I type out the major points - especially anything I would find uncomfortable infront of ds - or if an important point is missed I follow up with a letter. I also keep copies of everything!!
If you think a statement of sen is required ( ie is the school after all advice cannot give your child sufficient support to thrive and make adequate progress) you can apply as a parent ( oh how I wish I had known that 5 years ago). IPSEA is a useful source of information.
You have done well to get as far as you have.

Thanks so much for taking the time to reply, ladies. I saw his reception teacher and we have arranged to sit down with all the relevant paperwork next week and discuss the situation. What should i be saying / doing, do you think? My main concern is that Ds is not just labelled a 'naughty boy'. I am terrified of this happening, as he isn't 'naughty'. He's totally lovely, but finds it very hard to cope with his emotions and expressing himself...

Beryl

I would go back to your GP and insist that you are referred to a developmental paed at a child development centre. CAMHS as you have seen can be next to useless in these situations.

BTW an ED Pysch cannot make a diagnosis, they are there to support educational needs. This is whom the school should be getting in and I would be asking about this with the school.

Apply for a Statement of SEN from your LEA asap. Do not let school do it, make the application yourself. IPSEA as magso has written are very good www.ipsea.org.uk

Also read the Special Needs; children section of this website and post there too as it gets more traffic than this particular forum.

You will need to be persistant and hard nosed with people like the LEA and school otherwise they could fob you off.

You are your child's best - and only - advocate.