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Hectorshouse

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Everything posted by Hectorshouse

  1. Hi, I used to be a frequent visitor here and found the support and knowledge gained invaluable. My T is now 22 and living back with me as every supported living placement has failed. I am now back on the band wagon and fighting the good fight again. So glad I could remember all my login details :-) HH X X
  2. Its has been eons since I posted on here, but I lurk regulary, I have total empathy for how you feel, My T is now 14 and driving me slowly round the bend, we have been to hell and back with schools and LEA's, finally got provision and schooling sorted, SServices came and then disappeared into the mists *sigh*. Now I have a big and strong aspie, who always argued black was white and vice a versa, but now is constantly on the back argument game ... everyday see's a new conflict, I've tried ignoring, i'v tried patient and funny, but everyday it changes, sometimes i'm better at not letting it get to me than others, but it can be soooooo soul destroying. And for those that say aspie's don't lie ... hmmmmmmmm if only that was true of T ... he has in the last year become proficient in the extreme, or maybe his reality is just not in tune with mine anymore. It makes me sad to be in a constant war zone again .. i feel that we have gone backwards to behaviour problems before dx, and everything I have learnt doesnt work anymore ... Today was a bad day, and yep I think the neighbours heard us again ... *sigh* There are good days though ... but on the bad days they are hard to remember. HHXX
  3. Hi emma ... in November last year my local paper ran out story on the difficulty we were having finding appropriate education provision for T ... if you want a comment I have copied this from the papers website .. "We would always advise families moving here with specific educational needs to ensure the provision they require is available locally before they choose exactly where to live." I think this covers the not supporting parents of children with SEN ... also the whole story in the paper and the comments that came in from across the country here ... http://www.thisisexeter.com/displayNode.js...e=sidebarsearch HTH HHxx
  4. Mrs P .... hello and welcome .... xxx We're a friendly bunch really, and now that Phas has handed in the last of his coursework you might get a look in on the ole puter!!! HHxx
  5. .... so quickly has this slipped from the headline news ... so sad ... Perhaps it was with a sense of voyeurism I watched and cried, but having lost my husband to suicide (not at all related to T's problems but his own) I felt overwhelmed with this ... My husband in a way robbed me of ever using this as get out clause, for that I don't and do thank him, for I would never and could never leave my boys, but at the same time I reached I point of total despair a year ago, I lost everything I believed in (my mind included) but I am still here and so are my boys ... depression hits for all sorts of reasons, mine was a whole heap of them and T's troubles (which are not his fault by any means) were a catalyst to a breakdown. I know as paula said earlier the thoughts that come with feeling like this, but I am still here, and it IS places like these that keep me going, in the dark and lonely hours when sleep evades me and loneliness creeps in ... I know I can find something that we keep me going. To take your own life is one thing, but take anothers leeps beyond what we can understand, I only feel grief and sadness for all that knew them ... in prayers and thoughts they are, I hope that love, light and happiness had finally come there way ... HHxxx feeling sad tonight!
  6. I caught this on the news today ... couldn't believe it not again!!! I sat with my older son A and cried, Ryan was the same age as T and both with the same mental age, as has been I hope it is questioned as to why she was depressed, they said on the news she felt she had failed as a mother ... god I am sure we have all felt that at times ... A hugged and made me promise that no matter how bad things got I wouldn't ever think of doing that ... I am lucky I have good friends and family support, I have learnt the system and have got it to work for me, but there are too many parents out there struggling and feeling isolated and hopeless ... I am soo glad that there is this forum, I do pray that it wasn't one of our members ... Ryan and his mother will be in my thoughts tonight and I have lit them both a candle. Lack of support, provision and acknowledgement of what its like bringing up our children, let alone having to cope with it all alone is what we here about on these boards all too often. The hand wringing will happen for a while, but how many will have to suffer before things can change. I love my son and I love my life, but it wasn't always thus, our lives shrunk beyond belief a few years ago and only now are they beginning to expand. My thoughts, prayers and love go out to this family, such a sad loss and as always avoidable ... HHxx
  7. tenacious artistic (and definitely a bit) barking ... !!!!
  8. Hi Jayjay ... sorry I'm a bit late to your post, like MIN (who bless is still in cornwall) I was there until last year with my little brood ... unfortunately it is a provision backwater, the LEA unfortuately are not very helpful and the lack of special provision (unless severe) is precisely lacking ... there is however one school that is predominantly for children who are ASD but places are as rare as rocking horse do do's ... if you get my drift! If you want to know what it is like then check out any of Mother In Needs threads and also my blog which you can get to by clicking on the link in my signature section ... if you want to ask anything feel free to pm me. Apart from that though, it is a beautiful part of the world, one that I am still drawn too but unfortunately it wasn't the place to live for us, not only that, changing boroughs is a nightmare, it can be done but it is fun and games with the LEA's and schools, and if you already have good provision that you are all happy with (a rare thing!) I would advise that you really think about the benefits of such a move, but it is not for me to tell anyone what to do, I can only speak of the experiences we have had. Good luck, HHxx
  9. The discussion of schizophrenia and ASD is difficult, for many years parents of ASD children were told that their children had Childhood Schizophrenia, this all to common mis diagnosis led to the unecessary distress, there are still some practioners who advocate that AS is CS which is in fact extremely rare. Although not an expert on this, I have read much as most people here, and the use of an inappropriate CS dx has been more harmful, alongwith the remove the child from the parents as the AS is due to poor parenting, ignorance breeds abuse. As has been said AS is a development delay, Schizophrenia becomes apparent during late teenage years to early adulthood. I recently lost a very good friend who was schizophrenic, he was not always thus and had once been a happy and fulfilled child and teenager, unfortunately this all changed when he was 19-20 and he spent the next 12 years of his life very lost, he jumped between taking his meds and not, when he was well after periods of taking them he believed he could stop and he would still be well, unfortunately this was not the case as those around him witnessed, he was a passive schizophrenic but extremely paranoid and he was also in no way ASD. When I was younger I regularly used to 'see' things and hear voices, I still occassionally have moments now, usually just visual flickering or traces, the seeing things and hearing things I never told my parents or anyone for fear of what they might think, it wasn't until T was dx'd and then subsequently my own dx, that I realised that I'm not going mad (although thats debateable ... trying to lighten the tone a bit here) T does see things and suffers from extremely visual night visions ... always the same thing, wolves are coming in his room, and he has always talked to himself, whether he hears voices I am not sure, but he is quite happy chatting away to himself, it doesn't bother him and it doesn't bother me. This is something that I have always been uncomfortable talking about, for precisely the reasons that I might be dx'd with something that is totally inappropriate. I am truly sorry for Timelords son and the experiences you have had to go through as a family, you obviously love your son very much, but I think that baddad is right when he says that 'IMPLICATION that professionals' statements placed on YOU and the rest of your son's support networks... "Without the correct treatment and support he would develop schizophrenia"... The fact that he DID develop schizophrenia IMPLIES a level of 'blame' on the people providing the treatment and support (presumably the original consultant included?), because it obviously WASN'T the 'correct' treatment and support...' As a parent I would also be up in arms about this, where was the right treatment and support, if this could have been avoided then why didn't anyone do anything about this ... some serious questions to be asked of those who were responsible for the well being of your son. HHxx
  10. I'm not saying where I'v stuck the pins ...
  11. the understatement of the year smiley!!! badders is ever so very mad .... and slightly bigheaded ..! eh badders! But I know I will never look at the mods names in the same light, have picked myself up from rolling around the floor ... what a great start to the morning ... am printing it out putting above the puter to remind me of those that moderate HHxx
  12. when we moved to Devon I was told by one special school I was not allowed to visit unless we had EP referral from the LEA ... it does seem that some special schools are run on a closed door policy! Access denied unless those in the higher echelons of the LEA ivory tower deemed it necessary ... Freedom of choice my ar*s! Even when we found an appropriate school in the m/stream my preference was restricted by use of the LEA transport policy ... but I got round that little beauty and got T his place and the transport. God they make hard for us, we might have to be fully paid members of the awkward squad but the LEA seem to have been the school of ###### mindedness. HHxx
  13. Sorry phas didn't mean to duplicate, HHxx
  14. I have recently been sent this information, and have checked the references to check that they are true cases, I will be using this information in my meeting with the LEA to finalise T's draft statement, I thought it extremely pertinent to share this information .... references re specification and quantification 1. London Borough of Bromley vs SENT and others 1992 2 ELR 260 This case establishes that therapies, such as OT , can be considered as special educational provision when the therapy is a measure which relates directly to the particular child's learning difficulties. . ALSO B vs Isle of Wight 1997-- This case suggests that whether OT could be considered to be educational provision depends on the needs of the individual child. 2. SEE--- Code of Practice 2001 para 8 :34. This is derived from R vs Secretary of State for Education and Science ex parte E 1992 FLR 377-- once a LEA decides to issue a statement it has to specify the special educational provision necessary "in respect of each and every educational need identified in the statement" It makes no difference if some of the ed provision can be provided by the school or other agency. ALSO EA 1996 s 324 Reg 16 Sp Ed needs regs 2001 and schedule 2 3. . The wording of the sp ed provision should be clear and unambiguous-- it should state WHO is to deliver WHAT, how often it should be delivered and in what size group it should be delivered. Also it is the person writing the statement--ie the LEA-- to decide on the provision rather than leave the decision to someone else. REFERENCES a-EA 1996 s324(3)--in particular the statement shall....( SPECIFY the sp ed provision to be made for the purpose of meeting those needs..." b-- Reg 16 Sp ED Needs Regs 2001 c-- Schedule 2 Sp Ed Needs Regs 2001 "in particular specify......(a) any appropriate facilities,equipment,staffing arrangements and curriculum..." d-Code of Practice paras 8:36 and 8 :37 "provision should normally be quantified (eg in terms of hours of provision,staffing arrangements)..."and sec 313(2) EA 1996--imposes a duty on LEAs to nave regard to the provisions of C of P. e-- court of appeal-- The Queen (on the application of ipsea ltd) and The Secretary of State for Education and Skills paras 14, 15 and 17 eg "the statement clearly has to spell out the provision appropriate to meet the particular needs of, and the objectives identified for, the individual child.. " and "it remains the case that vague statements , which do not specify provision appropriate to the identified sp needs of the child, will not comply with the law" f-- Littlechild, Clark and somerset county council 1998 ELR 129-- here the judge indicated that he did not see how in very any cases you could comply with the legal duty to specify the sp ed provision including staffing arrangements, unless the hours per week were set out in the statement. judge also said the real question to ask about a statement was "whether it is so specific and clear as to need no room for doubt as to what has been decided is necessary in the individual case." 4.See all references above for reasons why provision should be specified and quantified (noting that there is no distinction made in any of them between mainstream and special schools ) AND H vs Leicestershire CC 2000 471 ELR AND E V Newham and SENT 2003 ELR 286.---Here if there is clear professional evidence of what is required for a child then a tribunal would be expected to order a LEA to specify and quantify I hope this is of interest and help to anyone, HHxx
  15. Hectorshouse

    Statement

    Hi Lyns ... as Phas says I have been here and done this ... its quite an experience but it can be done, firstly when are you going to move and are you due for an annual review before that date? Also sections 8:111 to 8:115 of the COP are worth reading up on, and be ready to quote relevant bits from them to the new LEA. When you move the new authority MUST within 6 weeks of transfer when they are going to review the statement or whether they will make an assessment ... both LEA's are meant to support the parents through this process, unfortunately this doesn't really happen. Also IPSEA were a great help for me and T, as were those on here ... my blog (click on my link below my signature) has lots of stuff about our trials and tribulations ... also there is a thread on here 'New Area/New Problems' which highlights our experiences. Your welcome to pm me if you want to talk off forum and in more detail. HHxx
  16. I didn't know that about the raisins ... these are one of T's favourites nibbles ... we have virtually cut out the spud thing I have converted everyone to new pots as they are slow release sugars, unfortunately he loves pasta and am now buying the free from range at sainsburys ... we do do crisps but only one pack of Hula's in the lunch box, wholemeal pittas go down a treat and he'll eat grapes till the cows come home ... phew food ... it used to be so much fun! One thing we cut out completely is tomato sauce, the sugar quantity is huge, I don't half feel like a mean mummy sometimes ... but I do explain all these decisions to T and actively get him involved in the process, he checks labels now his reading is coming on and makes the choices himself a lot of the time ... I haven't yet gone over to GF/CF diet ... I find it sooo scary and with working pretty much full time not sure if I will be able to stick to it ... HHxx
  17. ABSOLUTELY FANTASTIC !!! Its such a shame that we have to fight so hard, but well done you PSP for taking it all the way, if LEA's stopped avoiding their duty to our children and spent their money in supporting them rather than fighting against it surely it would be a better outcome for everyone. Congrats to you and yours, HHxx
  18. These are the chords that T was playing ... I can't describe the rythm and this will do as a copywright of his tune .... DSW4 /// A /// DM7 /// DSW4 /// E T has just told me that the / means a strum ... if that helps ... it is a work in progress .. his words not mine. Awww bless ... HHxx
  19. hmmmm ..... don't take this the wrong way .... but are we feeling a bit .... well ... um .... like our children today???? This is the kind of thing that my niece (an extremely intelligent asperger) would've noted. Actually to be honest its the kind of thing I do as well I was actually only thinking the other day that on the 06.06.06 at 06:00 hrs it would be an interesting date and time ... ok am definitely going to get on with my life now ... HHxx
  20. Mozart is my favourite composer ... and his requiem always moves me, I also use classical music to help calm T when he is in a meltdown. HHxx
  21. Suze your spot on ... the move though traumatic initially has been the best thing I did for both my boys, its a shame my relationship with long suffering one didn't make it though, but hey thats life, and as long as I have my boys I know we will always be OK. HHxx
  22. thank you everyone ... its just soooo fab when things like this happen, after the bleak and very dark days of a year ago this is like our very own spring in our house with T. With all that said though, I still don't relax totally with the school, and do still have occassional gripes with them though, but on the whole it is a HUGE improvement of provision, but I keep my eye very close on whats going on, and the LEA even more so .... vigilance and tenacity! When it gets soo tiring fighting all the fights, its these precious moments that make it all worth while, and it is thanks to places like these that we have achieved sooooo much, krism gave the confidence and knowledge to fight the good fight, thank you krismites and thank you T for being the wonderful human being that you are. HHxx
  23. i've just published this on my bloggy but I couldn't wait for anyone to go there so I'm putting it here as well ... The school report arrived ... and with a slight sense of dread I opened it ... only to be totally shocked by the completely different child that was written about in comparison to his school report from Cornwall. Overall it is a FANTASTICALLY SUPERB REPORT ! Now that is something that I didn't think I would ever be able to write, that is if I had believed those alleged professionals that worked with T in the past .... 4 subjects graded his effort as GOOD 3 subjects graded his effort as EXCELLENT 2 subjects graded his effort as ADEQUATE 2 subjects graded his effort as CAUSING CONCERN He recently gained a level 6 in his science SATS as well !!! and this was a child that they could only cope with in school part-time a year ago, it just goes to show that in the right environment with the right teachers (ASD aware that is) our children can not only survive but flourish. I am soooooooo proud of T, he is going from strength to strength, he is having guitar lessons again at school as well, something he couldn't do in Cornwall, and tonight in a very creative moment he came rushing down for a pen (something that he would never have done before even picking up a pen would?ve caused a meltdown) to write down some chords that he had put together for a tune that he had just created!! Who say's that ASD children don't have creative imaginations ... I'm damn sure my little Aspie would dispute that, he might not understand abstract speech or thought but give that boy a guitar and the whole world is his stage I've just had a performance of said tune .... and it was ABSOLUTELY FAB!!! I'm a proud mum with a lump in my throat, Pascal (a really good friend and muscian) will be coming around soon and I can?t wait for him to bring his guitar and jam with Toby!
  24. I stumbled across this possible ceasing to maintain policy on our LEA's website, it looks that they will be advocating this policy in 2007 for statements under 0.6 ptfe (which I think is 15 hours support) ... they are also in the process of re-writing their SEN assessment criteria to go with this, as yet I haven't been able to get a copy of this or the new draft, but they are still putting statements through at the moment on the old criteria (which isn't published on their website .. apparently because of the re-drafting) ... It is looking bleak at the moment as a lot of children I know with AS are only getting statements for 0.6 which will under the new guidelines be ceased to be maintained by the LEA .... something smell fishy? HHxx
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