Hectorshouse

Thanks for all the replies, was feeling at such a low spot yesterday, I am trying to be more positive today. I am gonna try and get the statement finalised a quick as poss, have looked at the legislation and I can transfer it, although the LEA might not like having to do it, just need to get the special school in it, so a thats what I can be looking for where we move. Am checking out the other LEA today and getting in touch with PPS their as well. I think that maybe A will hate having to move but its not like he's actually got much ground to stand on for any reasonable reasons for staying here. And yep, I know my stuff now as far as SEN procedure goes, so no blind alleys through ignorance this time. I love my partner and I love my family, the thought of being seperated is unbearable, and surely to be together and resolve our problems is a better solution all round, than me just trying to soldier on alone, and having to heal the wounds of my children as well as my own if we seperate. I think I did answer my own query, but sometimes getting it all out helps and be able to share really does help, especially as I feel I have no one to talk to here now long suffering one is not here. Thank you everyone, I needed rational perspectives and you were all able to give me them, especially when I wasn't feeling at all rational yesterday just ver very I wish I didn't feel so emotional, but the last year has been such a strain, and the support really does help. Sending a group cyber <'> Thank you, HHXX

To say that things have been difficult of late is an understatement, but the strains of T's education or lack of and statementing and school etc have really taken there toll. To top it off A (T's big brov) has gone off the rails, got into smoking the old camberwell carrot, stealing and lying to us, has stuffed his mocks, and is currently staying with the ex in-laws to give me a breather. We have to move by 20.7.05, had found a house here just in the nick of time, but long suffering partner has had enough, he hates living here and is desperate to go back to where we were before. He gave everything up to move with me whilst I was studying for my degree, but that has all gone by the wayside in the light of T's problems at school, did manage to complete my first year, but have had to intermitt for the 2nd year. long suffering one has now given me the hard truth .. enough is enough, he feels that he should be able to return to his career and that I have had my chance at my degree, but being down here is not working, the family is falling apart and that we should all move back. He has gone today to find us a house back up there, and has got his old job back. My worries are that the move will seriously affect what I am trying to achieve for T in so far as his statement goes, and A will be in his last year of his GCSE's (not that he's actually being put in for that many!). If I stay to finalise the statement I lose my partner, and my family is broken apart. I feel caught between a rock and a hard place. I know that none of this is ASD directly related, but I have spent the last 6months fighting for T and now it feels like for what! I know I can pick up my degree or transfer to another one in another uni, so that doesnt bother me, but I really don't want to put my boys through losing another father. I suppose I have answered my own query but I am so worried about all the work I have put in for T that it might all be for nothing and I'll have to start from scratch with another LEA. Sorry for the ramble rant moan, just feeling really low and lonely. HHxx

Elle I can't add anything to the already fantastic advice you have recieved, but I am so glad that you found this forum, there is so much support here. Together we share and advise, and the more us parents share our knowledge the less the system can stitch us up. Take care, try to be strong, and share whenever you can. HHxx

How fantastic is that, I am sooooo pleased for you and yours that it was a success, and what a wonderful teacher it brought a lump to my throat. You must be so proud. <'> <'> HHxx

Bid, sometimes you just have to let it all out, and when it happens it like a tap being turned on, sometimes what we have to cope and deal with is so overwhelming that it has to come out in way or another. I didn't talk about my problems for a long time, or share my anxiety or the pressures, I ended up having a breakdown, if you can try not to be so hard on yourself. You do a wonderful job, and are a fantastic and proactive mum, we all need to let it all out sometimes. <'> <'> <'> <'> <'> <'> <'> HHxx

WOW ... fantastic big congrats enjoy the successes they need to be celebrated, autism isn't all doom and gloom, its just the system that makes it that way. WELL DONE HHxx

Hi witsend, I am pleased you managed to get a dx without any of the ho-hah that so many go through, it is a strange time after dx a mixture of relief and denial, but atleast now you will be able to move forward. HHxx

Hi Paul ... thats better we can get to know you now HHxx

This if fantastic news I am soooo pleased for all you and yours. It just goes to show that perseverance and persistance pays off, no longer 'desperate' definitely DETERMINED! Have you thought about introducing the school to the DfES good practice guide to ASD ... might be worth pointing them in that direction, especially if they are now prepared to adapt their teaching environment and allow for proper differentiation. HHxx

hi LKS, I am assuming this was your annual review prior to a phase transfer between primary and secondary school the DfES COP states ... Annual Review Primary Phase 5:69 All concerned with the child should give careful thought to transfer tween phases. Advance planning is essential. The move should initially be considered at the review meeting prior to the last year in the current school. Thus consideration of transfer from primary to secondary education would need initial consideration at the review in year 5. 5:70 At the review in year 5 it should be possible, in most cases, to give clear recommendations as the type of provision the child will require at the secondary stage. It will then be possible for the parents to visit secondary schools and to consider appropriate options within the same or similar timescales as other parents. 5:71 In a very few cases the options may not be clear at the year 5 review, in which case it my be necessary to hold an interim or early review in teh autumn term of year 6. Very rarely a child's needs may change after the year 5 review to such a great extent that the recommendations as to the type of provision will need amendment. This should take place through an interim or year 6 review. 5:72 Thus for all children transferring between phases, except from early educations settngs, a provisional recommendation should be made in the year previous to transfer so that parents can consider optons at the same time as other parents. The childs statement MUST then be amended by 15 february of the year of transfer in the lifht of the recommendations of the annual review, the parents' views and preferences and the response to consultation by the LEA with the school or schools concerned. There will be no need to require the annual review for such children to be brough forward since the informtion from the previous review can be used. All arrangements for a childs placement should therefore be completed no later than the beginning of March before transfer. it is imprtant for placements to be made and to ensure that parents and children feel confident andsecure about the arrangements in question. 5:73 It is good practice for the SENCO of the receiving schol, where possible, to attend the final annual review in primary school of pupils with statements for whom the particular school has been named. It will then be possible for the receiving school to plan a differentiated curriculum response and an appropriate IEP to start at the beginning of the new school year. It will aslo enable the pupil and the parents to be reassured that an effective and supportive transfer will occur. This is all very relevant legislation for your situation, and I think that you need to point all of this out to both your school and the LEA, a nice letter quoting the COP would go down a treat, and ask for a meeting with your caseworker as a matter of urgency. I wish I had sorted out T's transfer and had known then what I know now, if I had we wouldn't be in the pickle we are now in, and T would've been placed in an appropriate educational setting, rather than failing miserably in a poorly equipped and facilitated secondary, that reluctantly acknowledges his AS. Don't mean to preach, but I can't stress how important getting this phase transfer done well means, it will save so much distress in the future. HHxx

I pace up and down when I'm stressed, can't sit still at all, and grind my teeth, which actually makes my jaw ache. Also I push the ends of my fingers usually my index against my thumb it has a dent in the end of it, one at a time and drag my nails overs the ends of my thumbs and palms, I think it was probably worse when I was younger, and this is a more restrained version ...

T destroys his work all the time, rarely does he actually manage to complete anything written with any kind of success, practical stuff is better, but he still has his wobbles, he totem pole is in and out of the bin in the DT room like a yo-yo at the moment. He also doesn't do praise, it seems to work in the opposite way and usually sends him off on one ... and as for the eating T could eat and eat and eat given half a chance, he is the same with drinking, I have to watch the water intake because of his toilet problems, he can't have a water bottle in school as he drinks from it compulsively and gets abusive and posessive if its removed HHxx

just a note of caution, beware the wording 'access' as this is non-specific, it could mean that he has access one a week, year, millenium etc ... you need to get this clarified, who is going to supply this, where is it going to happen, and how often, if not you'd be surprised how they might wriggle out of it ... 'access' is a weasel word!

I didn't find out until I was 30 something! The dx came along after my son's when I started to look at myself and think hmmmm I do that ... etc ... it hasn't changed me really and I haven't told many people, but it has explained soooo many things to me that I was struggling with before .. i.e I am often called very blunt, I have a much better ability with the written word than the spoken word, I'm sooo OCD, cannot abide change, and suffered with depression and extreme anxiety most of my life, I also had hallucinations and night terrors as a child, and still occassionally have day time hallucinations now, something I don't actually tell to many people! Didn't realise the significance of this until I read a thread on here about it. There is more, but no need to go into too much detail. I am still ME though, and the friends that I do have take me for what I am. HHxx

Can't add anymore Carole and Z know their stuff, except to add that a dx can be a protection for your child, without it they can become inappropriately dealt with or considered EBD children, or worse still it can be deflected back to you as poor parenting. It doesn't change the child you love, but it give those who work with them a clear picture of their needs (ideally that is, and hopefully if the pre-school/school have a working knowledge of ASD). Good luck anyway, and welcome aboard, you are in very good company. HHxx

No worries will do Carole I had thought about doing it but as it is so long I was worried it might block up the system. HHxx

Thanks Bid yep got my ACE book, never far from my puter, I am dissecting the statement as well, but I wanted to publish it on the web and all the stages I am going through as a useful exercise for anyone else. There are huge amounts of vagueness on it and I have had some great responses elsewhere as well, which I will follow up on my blog, I have a meeting at school on monday, a post draft post-mortem with all the usual suspects. Thanks Elaine I am off to check out IPSEA for that piece of case law as well, looks like the works really about to begin on this, its been a frustrating time waiting for the new statement, but I determined to get it 'right' this time. Most of what was on the statement I do not think a main stream secondary are going to be able to feasibly provide, which is good news as T is on the waiting list for the ASD school (theres only 2 on it and he is 1 of them). Thanks for the respsonses, I am trying to gather as much and more information as possible, when I rung the LEA today to ask why they haven't included a report for SS they said that they often didn't reply to these requests unless they are involved with the child durrrr T's SW has been involved since the PSP meeting in Dec and we had a core assessment done, although still waiting for the promised respite, and she is fully versed on the problems T is having at school. HHxx

T's draft statement has arrived and I have typed it up on my blog, I would really really appreciate anyones opinion on it, I have been intouch with NAS advocacy and am waiting for the call back, and PPS. I have some queries on it > the provision states that the support is to be provided out of the schools budget and the LEA will initially provide 25 hours LSA support ... > they mention that he has dyslexic-type difficulties ... he has a clear dx of dyslexia and dyspraxia but this is not mentioned > the medical report states that on supervision grounds T would qualify for transportation, but this is not mentioned anywhere Any advice pointers .. or suggestions of a fine wine would be appreciated, my blog is http://www.asdfriendly.org/blogs/hectorshouse/ HHxx

Reading this made me cry! Why do our children have to suffer so much, Frances-Mary, you are not alone and neither is your son. It breaks my heart when T locks himself away, talking to himself for hours, telling me he wishes he as dead, never been born etc ... I know about teenage angst, but AS angst is dreadful, I lost my husband to depression, and I'm damned if I'm going to lose my son that way as well. HHxx

Elanor it was the same for us, 'heres your dx now off you trot!' ... 4 years later and we are still fighting, respite has been promised but never materialised, statements are fought bitterly over and still in negotiation, the NAS programmes weren't around then for us, and as for benefits ... didn't have a clue. But now things are better, but everything I have learnt has been after much blind alley navigation, and if it wasn't for places like krism I don't know what I would've done. SS it is as Elanor says, ask ask and ask some more, followed by some serious pestering, and there is always krism to come back to too sound things out. HHxx

Hi Sylv, your in good company and it looks like your getting all the correct referrals, I hope that you able to get a clear dx. HHxx

Hi Fiorelli and welcome aboard, you are very good company here, you are already on the way to sorting things out and seeing the pead will be a good start as you can get a definite dx. Please do go for the statement of SEN, your son really needs this protection or the school will exercise their powers of permanent exclusion. There is loads on how to do this in the education section, and loads of really helpful people here to help you through the process. Your son sounds in many ways just like my T, and once your able to get a clearer dx you will better able to understand and help him, therefore helping you as well. Before T was dx'd it was dreadful, I was accused as a poor mother (refrigerator mother was the term used which is absolute bull) and MSBP was mentioned as well, alongwith the possiblity that he had a serious psychiatric disorder. He also had many hearing problems when he was younger and this masked the ASD as the 'experts' concentrated purely on this but once this was resolved, the ASD was finally dx'd when he was 8. He is 12 now, its still not easy, but have learned so much that I am able to manage so much better, I no longer blame myself or him for his problems, and have managed to get him a statement (which has so far meant that he hasn't been permanently excluded) which means that his individual educational needs have to be taken into account, although this can sometimes be difficult in actually realising. HHxx

Best of luck Penny I hope he does well and enjoys the day, competition can be so hard for our children, and with you there cheering him on I am sure he will feel good about himself. HHxx

Sounds great, what age group is it for?

phew .. have just finished my first read of this and am going to have a bath to consider it, its about time that this subject was debated in the public domain, I just hope that the pressure and emphasis of the failure of inclusion continues. I agree with the ideology of inclusion, but successful alternatives and appropriate provision has to be paramount in SEN, it does not work for everyone and it is this section of children that suffer the most. Getting the statement right in the first place needs serious consideration, too much time is spent on budget dodging LEA's, parents having to swim in the SEN system without the back up and support that a major organisation like the LEA's have. Every child matters ... according to the governments new mantra, but as many of us here know this is often not the case, children not budgets need to be considered, support not fobbing off needs to be there for parents from the outset. LEA's the government and schools are answerable to us, the policies decided in westminster are meant to be there for all of us, and not designed to alleniate parents or children from accessing what is their right, a right to an education according to the individual needs of the child. I hope this debate continues and all the right honorables stop going on about well it was your party that has done this etc ... Am also emailing our new MP again!!! and attaching this debate as a link, maybe she might actually reply this time .... heres hoping! HHxx Thanks Carole real food for thought.