Hectorshouse

Just picked up a point that Kathryn made, about social services ... we have a SW although she can be pretty damn ellusive at times, and I don't think that she has been included in the reports phase of T's statement (draft coming saturday a.m!) ... is the involvement of SServices in the statementing process necessary and important ? HHxx

I have already said that my lady has been fab, and she has, but also she hasn't always agreed with what I have done and thought that maybe I was being a bit too confrontational with the LEA, but as it turns out she now totally agrees with my line of attack, and has started calling me and asking if I would mind if she put me intouch with some other mums as I seem to do so well in meetings and can confidently understand the COP ... I think that as she is employed by the LEA there is always going to be a little uncomfortablness on her part when I challenge them. HHxx

I said no as well and T is in mainstream secondary school, primary was better though ... I think that the problem is as out HT put it, mainstream schools are education factories, and their aim is push out as many kids with appropriate GCSE's as poss, they run into trouble with ASD children as they are often trying to push these children into the wrong shaped holes, this is why special schools seem to fulfill statement criteria so much better, as they are expecting to differentiate their education programme for every child that comes their way and do not work from the factory analogy that mainstreams do. HHxx

T doesnt have this problem can't get him out of the bath once he's in, still has loads of bottles and toys etc in the bath with him and he's 12, but I don't care about that as he needs to bathe every day as other aspects of his personal hygene are pretty cr*p he never used to like to use toilet paper, found him using flannels ... now use the kando thingys but he still resists, doesnt mind having a poohy bottom or boxer shorts ... aaaggghhh & yuuuccchhh! HHxx

T has virtually the same DX, and as such has never won any kind of race, he had sports day yesterday and was entered into the long jump, which for some bizarre reason he actually does really well at, and that was about it, but because he so desperately wanted to be a part of it the HOY made him official photographer for the Year 7's, he had an access all areas pass made and had an absolutely fab day (mind you that is according to T I haven't heard back from the SENCO yet about any problems) he wasn't bothered in the end that he didn't really compete or even aware if he had done well in the long jump. What worked for T was being made to feel useful and helpful, and surprise surprise they had a happy compliant pupil. I don't know if this helps, but it certainly made things easier for T and easier for those around him, and gave him some self esteem, much needed in his case. HHxx

I would suggest that you try and arrange a meeting with the GP to discuss this, I know that in certain circumstances GP's will keep patients from outside of their area, this happened with my brother in law to enable continuity of care, and I think that you will have a case for this as well, if Steven is happy about seeing your current GP and you need this support and continuity of care I would try and argue your case .. HHxx

Hi George and welcome aboard, I live in cornwall too ... good luck with your home eding, I may be on the same route myself if I can't get my son's statement sorted out. HHxx

T' language can be terrible, especially in school, lots of f**k offs and you's, along with bl**dy school, its all cr*p anyway so why don't you just f**k off etc ... His TA bears the brunt of most of it, closely followed by the SENCO, and he says it with real force sometimes, unfortunately his TA whose son has AS is scared of my T, she has said at a recent meeting that she felt she couldn't be as firm with T as she was with her own son and that this may have lead to T not respecting her ... oh yep no sh*t sherlock, she is consistently inconsistent, and T call smell out a chink in someones armour at a hundred paces ... you'd think she'd know better! T also loves any toilet humour or bottom jokes, hysterical giggles for ages, usually ending up with him all wound up, and I have heard him swear at his brov many a t time, which usually results in a case of fisty cuffs at ten paces. He has sworn at me, and I do make it quite clear that I don't swear at him because it is not a nice thing to do to someone you love, as it doesnt make anyone feel very good, and would he like it if I started swearing at him when I was in a bad mood ... lots of silence and frowning, but by repeating the same mantra the message is seeping in, and now he picks me up when an odd expletive slips from my mouth. HHxx

Stage one (which you are at now) is 6 weeks to decide whether to assess. Stage two if they decide to assess will take 10 weeks to decide if they are going to draw up a statement, 2 weeks to make statement. Stage three proposed statement 8 weeks. The whole process takes 26 weeks! They can decide at the end of the 1st part of stage two not to make a statement, but the must contact parents with the reasons for their decision in writing. Hope this helps, HHXX

My PPS has been fantastic once I knew they existed, and what they were actually for, my lady has on many times now come out beyond and above the call of duty, she was also a teacher and specialised in the autism for many years, which has been really great as she has a true understanding of our position. I don't think that many parents really know what they are for and are wary of speaking to more professional bods, I know that in some areas they are really quite cr*p but this is not true of the whole country, bit like LEA's. If as a parent you don't have support in meetings, you don't have to agreee to it straight away like LKS has said, and you are entitled to have that support there.

I've always been a little confused about this, T's DX came though when he was 9 for AS but he had a signifcant language delay, didn't speak (or rather shout) until 2.5, but this was put down to his glue ear with kept recurring finally cured when he was nearly 7, so the speech thing has always been a query was it autism or hearing? I think if his dx had come through earlier we would've had a dx for HFA, but as his speech was so far on by the time we were dx'd he got the AS dx. His speech has in many ways been his down point though, as most people believe his far more comprehending than he actually is, he used to have a very monotone and loud voice, but since he started singing he has intonation and more control over the volume, with a 1950's BBC lilt.

Hi Sel, was wondering how you got on? HHxx

Just to let everyone know, T has had a brilliant day today, much calmer and loads happier, he is such a different child when he is at home and doesn't have to do the school thing! By the end of yesterday, he was fine just really really tired which is par for course after a major do, really glad the GP has agreed to the urgent referral back to the child psychiatrist. We have had such a fab day, we had quite a few things to do, so to make it easier for T he got his new notebook out (he likes notebooks, we have quite a few) and we wrote a list for things that T has to do today and a list that mummy has to do today, he wrote his all to do's himself and was just fab, ok thats enough fabs for now, but he has been fab. Going to see the OT on Monday, and then if he's ok he'll be back to school unfortunately I have to keep him in the system at the moment, statement is due 1.7.05, but I am seriously considering home eding after the summer hols if I can't get him into the ASD school. Thanks again everyone, it has been a tremendous help being able to share my load, HHxx (feeling slightly more revived today and off to have my hair cut and coloured for the first time in about 8 months)

Good luck, Carol, you sound very together and know your stuff. Wishing you luck as well, HHxx

GP has just called, told him what was happening today and he had agreed that this is a very worrying situation and that his depression might become entrenched, and is referring him back to the child psychiatrist as a matter of urgency. He has told me to keep a diary of T's ups and downs, and that I have his full support. I told him about the SENCO and her 'abuse' comment, and that I'm afraid to take him to school and afraid to keep him home now, he was gobsmacked by her and agrees that the situation is untenable ... Thanks for all you kind words everyone, and Bid there is one ASD school and T is on the waiting list, his year group is already oversubscribed, but there are only 2 children on the list and T is on of them, so I'm hoping I can put the pressure on this situation. I wish he had never gone to the school he is in, wishing I knew more then but I'm so glad that I have found this site, as it gives me the drive to go on. You weren't to 'preachy' what you said made me because it hits the nail on the head, and also I'm very emotional today, just blumming worn out. Gonna turn puter off in a minute and curl up with T this p.m ... Thanks again HHxx

Today has gone seriously pear shaped, following another dire attempt to go to school. T is now beside himself, have tried talking to him in his more lucid moments, but essentially the gist of it goes along these lines ... he doesn't feel he has any friends or ever has had, he has tried being himself and that didn't work, he has tried being someone else and that hasn't worked either, he wants to go to school but can't understand what he has to do, he doesn't understand why no-one likes him or why he is so abussive to the teachers and TA's alike .. infact it has been a half of hour of tears, sweats, extreme anxiety and its still going on. I have reassured him as much as can, I've told him I love him and always will, I don't always like how he behaves sometimes but that doesn't mean I don't love him, I've called the GP and waiting for him to call back, was that the right thing to do? I honestly believe that he is seriously confused and depressed. I just want to pick him up and take him away from everything that is hurting him so much, mum instinct kicking in big time ... HHxx

Another sh*t day in paradise T was meant to go on a trip today, but on the way to school this morning big brov decided it would be a good time to remind T of his behaviour yesterday at school, and the fact that he was really rude to a member of staff when A was there. T starts huffing and puffing with all the usual no I didn'ts etc ... finally comes out with the truth and by this time, he's wound up I'm wound up and we're doing a u-turn at the school gates dropped big brov off and T and I are on our way home, nice one big brov To be fair, he finds it really hard, he can't understand why T behaves like he does when he doesn't do that at home with me, big brov gets it, but a lot of that is sibling stuff its not all AS related. I'm now in a situation where I'm afraid to send T to school incase in has 'a major incident' or to afraid to keep him at home in light of recent events and that maybe this will be used against me. Anyway have kept him home today, he is distraught for not going on the trip, looks like I'll have to keep him home tomorrow to recover from today's events, waiting for the SW to call, feel like I can't win. i know he needs to be in school f/t but not at his own risk or those around him being at risk, I would not stand for his abuse and I don't know why he is soo abusive to everyone there, everyone except the HT. Thanks for everyone's support, but today is a really bad day, ssooooo fed up

update ... Get to school for 8.30 drop little darlings off and am waiting in the car compiling last minute notes, the PPS lady (forgot her choccies by the way, but will send them in post) was just going in so came and sat with me in the car to go over what I had prepared and discuss recent events ... She had had a telephone call from the SENCO last week, basically having a go at her for advising me to return T to school f/t. To which she replied, that she was acting on the evidence that she had (i.e. the letter) and its implications. SENCO told her that me returning T to f/t was abuse ... and this was before I got into the meeting ...! The meeting started with the usual gang, EP, AAT, TA keyworker, SENCO and her 2nd in command, HT, PPS and little ole me, the Psychiatrist was invited through the CAMHS nurse, but didn't come and the HOY felt there was little he could offer the meeting. SENCO proceeded to give her blurb about the current situation, and using her incident log to highlight the 'serious' increase in major incidents, to which I was able to query the day book entries to number of incidents, and got the blurb, that the TA's don't always have time to write in it, to which I said that unless they have an accurate record of the incidences and precurring events this information was as good as useless. They are now keeping a small comment sheet attached to the incident log, and have managed to try and get across that we need to reinforce the good days and/or lessons, and not to focus only the bad! Much ho hah about about his defiance etc ... and that was her report. The HT was chairing and was absolutely fab, made sure that EVERYONE knew that this meeting was about finding the best package for T. I won't bore you all with the ins and outs, but it had its heated moments, and silences, usually when the SENCO had made a comment. The SENCO and her 2nd did try and push for p/t again, saying that really this was best as this is what had been working before and didn't I agree with that ... ERRR well actually NO! T's world had been shrunk beyond all recognition, and that he was entitled to a f/t education according to HIS needs. Much discussion was made about the use of social stories to help T cope with his behaviours, and I have said that I will help with this at home, as I have had much success with them myself particularly as he has been at home sooo much and as I no longer work (because of the p/t) I have been able to much of this with T. Anyway, the action plan is along these lines ... > An individualised t/table, working from the p/t programme and extending it (which is what I wanted all along!) to include supported reading and literacy programmes. > Social stories for coping with difficult situations. > Stress breaks/walking therapy to be used if a meltdown can be detected at the rumbling stage. > An incident log for good and bad to try and work out any pattern of behaviour or problems. > His tutor group during a student development lesson are going to have a lesson on ASD, I am taking in my copy of 'make me normal' to be edited highlighting Maneer and his problems, as he is almost identical to T, to help them understand why some days T decides he is a parrot or most recently Darth Vader! or why he appears to get away with being abusive and then don't. > Increased use of visual aids, to help T articulate when he is stressed, rather than going into a full blown meltdown. > All to be review on 5.7.05 which is a meeting proposed with all concerned to go over the draft statement which should arrive 1.7.05. All this took 1.5 hours, was so tired afterwards fell asleep in front of phil & fern, thanks for all the support, its another battle behind us, hopefully I can now relax a bit until the statement comes through that is I really really wish this was a wind up, but her comments to PPS about me returning T to f/time constitutes abuse have really upset me, was it not the school that decided T go p/t? YES!!! this decision has cost us literally our home, my job, my degree, T's world dissapeared before his very eyes, they weren't at home with a distraught child day in day out who didn't understand why he couldn't go all daylike everyone else, isn't this abuse! Surely it is and I didn't ###### well agree to any of it, have fought it tooth and nail all the way. And to top it off, my SW who had disappeared into the midst of social services has now called to arrange an urgent home visit with me and T following a recent allegation from school ... hmmm I can guess what thats about ! HHxx feeling tired confused very

A 1000 members well done krism, it just goes to show what a fab place this is, welcome to all the newbies from another fairly new newbie! HHxx

Yep definitely get in touch with IPSEA, they are having parents approach them all time with LEA's trying this one, yes SEN funding has become more devolved, but they are not allowed to refuse a statement on those grounds, it infact actually means the opposite. IPSEA recently took Devon LEA to task for not agreeing to statements, do not let them bully you, get some advice and hang in there. Have you been in touch with NAS? or the Disability Rights Council? This is discrimination and is not in line with the DDA, Ed Act or the SEN & Disability Act. They are clearly operating outside of the legislative framework, and if they can get away with it they will, they do not expect parents to know or understand any of the legislation. HHxx

I'm sending her everything I have as well, nice one Helen HHxx

*"Dedicated support". *All staff who come into contact with your son be made aware of his diagnosis. *A modified curriculum(?) *The LEA's advisory teacher for Autism to write up your son's IEP in consultation with the Senco *A buddy system(?) *Disapplication from any subjects that your son has tremendous difficulty with(?). *Extra time in internal and external exam conditions/the use of specialist equipment?/scribe?/prompter? Totally agree with this, just wish I had known earlier what I do now, then maybe the transition to highschool would've gone better with the correct provision in place, instead of the 'suck this and see' approach, which has only allowed for T to fail, be excluded, go to school p/t etc .. etc .. HHxx

T (12) has AS/Dylexia/Dypraxia + severe problems with attention deficit and APD. IQ 87 Reading & Spelling age 7 (1st Centile) Currently gets funding from the LEA under his statement for an additional 15 hours of LSA suport, to be provided on an individual basis, in a small group or as in-class support. His provision was increased to 25 hours for the summer term, whilst the reassessment of his SEN is being carried out and to aid his reintegration into f/t school. He also now benefits from the use of a laptop. I have just (today) successfully negotiated a fully differentiated and individualised timetable, with a reading/literacy programme to equip him with the tools he needs to 'cope' at school. As obviously working at a KS1 in a KS3 environment has caused numerous difficulties, and he has the capability to increase his reading/literacy ability with the correct support/teaching. I am currently in the process of having the statement completely rewritten to get rid of the vague and amiguous comments that were in the original, and for full time 1:1 support, a dyslexia programme, social stories etc ... and hopefully a place at the ASD special school, however that is more than likely just a pipe dream as they are full to bursting and have a waiting list as long as some of my posts .. Our LEA bands funding as follows 1ASD school action+, 2ASD school action+ & 5-10 hours LEA funded LSA support, 3ASD school action+ * 15-20 hours LEA funded LSA support, 4ASD school action+ & 25-30 LEA funded LSA support, 5ASD special school provision. HHxx

Thanks Phasmid and LKS, I haven't long been home, and am trying to absorb the meeting at the moment, will post the details later, just really glad its over. HHxx

It probably did shake them up, parents are becoming more and more genned up on the process, where not the passive dupes they take us for, and after all they are meant to be providing a service to our children, and as such are answerable to us! Go for the SEN records, you need to write to school and ask for them, do it in writing or they will conveniently forget, they have to supply you with copies withing 15 working days, and they might charge you for copying. You will probably have some of it, if not all of it, but its surprising what extra little bits turn up in there. Don't get fobbed off, you are entitled to this info, the following link has loads of info about how to go about this ... http://www.asd-forum.org.uk/forum/index.php?showtopic=543 Good luck, and hi and welcome LKS good to have you aboard. HHxx