Hectorshouse

MIN I don't know if I can offer any advice or anything more positive than I know how you feel. T has been at home since his last exclusion in June and since our move to Devon, this also did mean that A (NT teen) also stayed at home due his problems and also seeing that T was getting all this support etc... School for me is our only respite as well, which I know it shouldn't be but then what choice do we have! All I can say is keep banging on the doors of those who can help, SS's CAMHS particulary CAMHS pester and pester away, tell them as you have told it here, be desperate and not proud ... my poor SS's bod came last week and I barraged him for 2 hours, gave him a 6 inch pile of paper work to take away, punctuated everything I said to him with RESPITE RESPITE RESPITE ... fortunately he also came on a day when I was suitably drawn, depressed and very very tired as T is going through a stage of nightmares again. I have so far lost my home, career and a good deal of my sanity, my relationship has been under tremendous pressure and just about survived, thanks to the lack of support so far recieved, and have a times felt like throwing the towel in completely, but somehow I manage to dust myself off and step once more into the fray! Have you heard of Dreadnought Aspires ... it is a group set up for children like ours in your area ... school, GP, EP, Parent (I think) can refer ... this happens during the day, ask PPS about it I think she knows ... Thinking of you, HHxx

Carole, am I reading this right ... is this asking for our opinions?

Hi Vv and welcome aboard, we are very gentle here and it is really supportive. Reading your post was like reading about us, I lost my husband 8 years ago, and had the same problems with professionals that you have had relating to the grief and possible scizophrenia (sp) ... 3 years ago we got DX and things have got easier, and being amongst other people experiencing the same problems really does help. If you need any help, advice or just wanna moan, feel free, I look forward to reading your posts. HHxx

... I found the drama both poignant and informative, and have been reading this thread with real interest. Before I watched it I had been preparing myself for a negative experience and bad portrayal of autism. At first I was uncomfortable with the portrayal of Dan and someone to be afraid of until the mum rescued him with her Autism Alert card, but the way it was flashed was all a bit bemusing and over dramatic .. anyway not totally relevant .. but it was the presentation of the sensory difficulties that caused Dan so much physical discomfort that I thought was excellent. For once portraying it from the autist viewpoint, the green and the pen writing on the paper, the inability to focus on the voices of the lawyers, and the way Dan's eye contact was used through the camera angles was great. I could go on ... but don't worry I won't There were so many similarities between Dan and T that at times I did feel emotional, his literal interpretation, precise blunt speech, and dropping into a perfect rendition of an advertisment or information about a certain thing that has caught his interest .. (the pen bit). But sadest of all was the 'hold' technique, something that I have used with T, but was taught to me for A when he was younger, after his father died he became aggressively emotional and this was used to protect him and me, now perhaps I may have to think of the consequence of that practice .. not one I have had to use now for about 3 years, but still .. it makes you think! Finally, before this turns into an essay ... the mother .. the lack of support she had received and was to proud/or afraid to do anything about, her self presribing anti depressants, her committment to her son and the difficulty this placed on her marriage ... all sounds very ###### familiar. I think it is not actually the outcome of the trial that is important, but the vocalising of autism and describing it in a way that NT people could understand. HHxx HHxx

Hi lojo, sorry if you feel you've not had much response ... the following link is the DfES guide for newly dx'd families ... http://www.teachernet.gov.uk/_doc/7040/Aut...ctrum%20Dis.pdf One I can say is don't wait for the bods to sort out things for you, you definitely need to inform the school first off and speak to your GP. Check out the NAS website http://www.nas.org.uk/ there is are course they run for the newly dx'd. Its difficult to know from your post if your son has additional needs that require at statement of SEN, but I suggest that you look into to this process as soon as is possible, again don't wait for the school or bods to do it, they WILL drag their feet. Also I would get in touch with your local social services and see if you are able to access any support services they offer. You may also be entitled to claim DLA and Carer's Allowance, it is worth applying, they sometimes make it a bit awkward, but most people I know with a little persistance get extra money which really does help. If there is anything here that your not sure about, don't hesitate to ask there is always someone here who might be able to offer advice/support/ or just an ear. It is difficult coming to terms with this, and probably seems that there is so much to do, but try not to dismay, your are very definitely not alone, many of us have been through it and more and more new people are coming on that are just going through the beginnings of this journey. HHxx

<'> <'> <'> <'> <'> Mel well done for calling CAMHS, keep pestering them though, I've had many many days like that and you just think its not meant to be like this when you have children .. why me! I really hope that CAMHS come through with your assessment, keep a diary if you can between now and then of the problems your having and don't dumb it down. Good luck, (hug) HHxx

SS's bod came round for 2 hours today, he is now coming to meeting at new school next week as well, and is going to speak to LEA about a plan B, he is also going to see about the OT and SALT that has not been accounted for in T's needs and needs to be set up. Have also managed to persuade a senior member of the CID's team to come to the meeting as well, to ensure that if we do decide to take the place that T can be properly prepared and supported through his re-integration, she was also very worried that there appeared to be no plan B and that he has had no link eding whilst he has been off and is now promptly heading of the SEN office to talk to the SEN officer ...he he emailed her T's statement and my parental rep as she hadn't any paperwork other than my original email, also gave her contact details of her opposite in cornwall and the EP details as well, just to make sure she could get the full picture, .... sometimes I feel as if I am the only one doing any ###### work on this, why don't people communicate more .. bit ironic as she is from the COMMUNICATION AND INFORMATION DISORDER TEAM Need to call the school on Monday and tell them of the extra guests to our little meeting, I'm sure it might raise a few eyebrows and I don't want to put they're noses out of joint, but hey they were the ones with the conditions ... and the more support they and T get the more possibility of success there is for T. HHxx

OH MY GOD!!!!!!! ... I'm almost lost for words .... This woman is talking out of her ar*e .... it was her responsibility to make recommendations - yes is ###### well is and to LISTEN to the concerns of the Parent. She said that it should not really be any concern of mine what difficulties the staff were having with teaching. - Oh yes it is!!! it is YOUR child and the school are answerable to you if you have concerns about how they are being taught! I asked whether they might be able to make suggestions to the school for my daughter who is 8 and is now about 3 years behind in reading she said again that they wouldn't be able to suggest anything the SENCO didn't already know. - well if they doing such a good job they wouldn't be having problems in the first place, and your daughter would be IMPROVING in her literacy ... durrr!!! She said you can trust the school that they are doing everything they can and I really think you are getting involved in aspects of your child's education that don't really concern you. - how dare she! how did you keep from ringing her neck, you are exactly entitled to get involved in ALL aspects of your childs education ESPECIALLY when they have SEN. LKS don't take this lying down, she had no right to talk to you like this the code say this ... Key principles in communicating and working in partnership with parents. 2:6 Positive attitudes to parents, user-friendly information and procedures and awareness of support needs are important. There should be no presumption about what parents cannot do to support their children's learning. Stereotypic veiws of parents are unhelpful and should be challenged. All staff should bear in mind the pressures a parent may be under because of the childs needs. 2:7 To make communication effective professionals should: - acknowledge and draw on parentl knowledge and expertise in relation to their child. - focus on the children's strengths as well as areas of additional need. - recognise the personal and emotional investment of parents and be aware fo their feelings. - ensure that parents understand procedures, are aware of how to access support in preparing their contributions, and are given documents to be discussed well before meetings. - respect the validity of differing perspectives and seek constructive ways of reconciling different view points. etc .. etc .. go dig out your code and remind the EP in writing of what ACTUALLY IS your right to get involved in all aspects of your childs education... Sorry for the rant, but this is outrageous. (hug) for you as well, I think I would've broken down in floods by now, but my blood is up at the moment. Hhxx

Hi busy just read you post here and remembered seeing on the IPSEA website that OT and SALT can be included in part 3 of the statement, This was taken from the case law section http://www.ipsea.org.uk/caselaw.htm 'A child's need for occupational therapy, physiotherapy and speech therapy could be a 'special educational need' and the therapies to meet these needs could be specified in Part 3 of a Statement as 'special educational provision'.' HHxx

my thoughts exactly ho-hum same old drum!!!

Try not to worry to much, it is always a shock when you get definite DX, but it doesn't change you or your child, it just gives people a name to use in conjunction with your child. Being here is the beginning, there's loads of help and support here and oodles of links for on the site for newly dx'd families. My son is 12 with a dx of AS/Dyslexia/Dyspraxia/ADD I knew there was something different about him to his brov at about 2 years as well, but it took until he was 9 for formal dx. We've come a long way since then, but this forum and others like it have helped keep me sane. Your love for your child doesn't alter with dx, but now you can learn about why they are like they are, and with the knowledge you will have the empathy and understanding to be able to live with it and support them. Welcome aboard, HHxx

Viper ... been here as well and got the T-shirt. I've had SENCO's make us go through re-dx, call me a refrigerator mum, insist that it was my parenting etc ... I have copies of reports written by TA's about things that T has said at school, apparently I am drunk and abusive mother ... This all stems from my birthday when I came to school after my b/day lunch and god forbid and couple of glasses of wine with it, and T had kindly informed them that I had 'whacked' him ... his words not mine ... the reality is I had the night before during one of his meltdowns put my own arms up to protect myself as he launched himself at me with full gusto and had caught him with my wrist ... should've seen my bruises and teeth marks ... but hey I'm such a bad mummy! SS's have to look into any query raised like this, but try to be relieved that they saw no reason to take any action. My SW did this and then came to see to reassure me, as I was frantic that I would lose T on the grounds of some vindictive SENCO witch!!! Keep strong, and remember your not alone ... this kind of thing makes my blood boil, and reminds me of Debbie Storey's extremely sad situation that ended so disastrously. HHxx

Please Please KRISSSSSSSSSSS Can we have a CHAT ROOM ..... Oh pretty pretty please, with a cherry on top, icing as well and choccie topping ..... HHxx

... was a telephone dervish yesterday, didn't achieve much but got quite a bit of advice. My SS's bod is due in hour ... can't wait to tell him what I think Have a meeting with the trio from possible new school for T next Friday, I am trying to make an appointment for a meeting with the Senior Sen Officer at the LEA before then as well. SENCO agreed that a plan B should be put in place, that it shouldn't be left until such a time as when T might fail, that he needs protection and not abandonment by the LEA (her words not might mine!) ... IPSEA were meant to call me back once they had looked into my query thats 2 days ago now ... and still no call HHxx

Thanks Phas, yes I do hope that I can offer suggestions to help them address their concerns. The Senco did seem very willing, I think it is just those over her head that are putting the pressure on her. I have offered my full support and cooperation. I agree with you that if it doesn't work then it won't be down to me, and as such I expect them (the LEA) to take full responsibility for this. A plan B must be in place if the placement fails, link/PRU simply isn't acceptable ... I will be speaking to SS's bod about emergency placement etc ... in the event of a possible failure of placement. Its just not acceptable anymore for the see what happens approach and we'll deal with it then. HHxx

Have just had a conversation with A (T's big brov) about this programme, he saw it advertised and then started asking some very worrying questions ... 'are all AS people dangerous? could T do this to you or me? etc ... Just spent the last few minutes reasurring him, that violence of this nature is VERY rare for people with AS, and T is sooo loving towards me and him that I doubt very much if he could ever harm us, apart from the meltdowns that is. That this is a DRAMA and it is FICTION, but that he could talk to me or even come on here if he needed to if he was worried and didn't want to talk to me direct etc .. Hopefully one reassured son ... and now one very frazzled mom! HHxx

Hi Hev, try and not be to hard on yourself, admitting that your worried about it and talking about it is great ... I have been there and got the t-shirt myself, we all need a crutch from time to time, but the difficulty comes in not acknowledging that that is what it is. I have learnt not to set myself such high standards, I'm actively trying to reduce my stress without the use of meds (yoga has been great & I'm now better defined physically because of it) pot or booze, but at the end of the day none of us are perfect. Thinking of you <'> HHxx

I have seen this advertised, and am actually quite scared about it, it doesn't really paint AS in a very positive light. Preconceptions of ASD need to be changed, but couldn't a better example have been used. I will watch, and try and remember that it is fictional drama. I will be interested to come onto the forum after and see what comments are posted then ... thoughtful, HHxx

Thanks for this Tez, its an interesting question ... The Dr the dx'd T the fact that after dx nothing The school in cornwall that finally agreed that statementing needed to be done URGENTLY, and the teacher who worked with T during his yr 6, fab bloke, who's son also was AS and knew exactly where I was coming from The SENCO at T's secondary school in Falmouth, who did NOTHING!!! and caused us nothing but extreme trouble, I'm sure the problems T experienced there contributed towards my breakdown last year, and for THAT I do hold her responsible My absolutely wonderful PPS lady in cornwall without whom I would never of been able to face another and another meeting The PPS here, not good, and from discussions with other parents and with him, very clearly in the LEA's back pocket, hardly independent and very patronising! The EP and AAT in cornwall, both of whom tried very hard, but were unable to deliver. SS's always sound good but never really deliver My mother, who has lately surprised me hugely, she is now very well read on AS (thank you mr attwood for your wonderful book) and has been a life saver since moving back to Devon. Her understanding and empathy, also her real phsyical support in the absence of any respite has been wonderful, even though she is a carer for her husband who is very ill and that she suffers with glaucoma and extreme anxiety .. good on you mum, this time you actually came through My son A, without whom I could not work, he often is a carer for T, although he has his own problems and often gets left out cos of T's problems, he is always there for his brov <'> My long suffering partner, who has difficulty with coping with us all in our madhouse, but has stuck by me through thick and thin, and although not the boys paternal father, he is Dad The LEA in cornwall and Devon, and they know why, inclusion b**sh*t!!!! when will they learn that square pegs do not fit in round holes, and the more you force them the worse it gets! And finally and most importantly EVERYONE ON HERE!!!!!! without this forum I don't know what I would've done or how I would cope, thank you! HHxx

Great news Faye, I'm so glad you got the provision you wanted and had the support of a good PPS, and the wonderful support on here really does help. HHxx

Thanks both Tez and Annie, your comments as always gratefully appreciated and support also. I think my choice has been based on the best of a bad bunch, I haven't been given the opportunity to consider special school placement because of the inclusive policy bull! My instincts are very much, that if the school need to set stipulations to entry then there must be serious concerns as to T's ability to survive within their environment. I have contacted the school and am going to arrange a meeting with both the HT and SENCO again to discuss their concerns, and find out if they actually do see it as a viable placement, or whether this is part of the inclusion policy and they are just covering their backs if the placement fails as they think it might well do. SS's bod coming on friday, have left message for him to contact me prior to visit to see what can come up with (not holding my breath tho!) Also, left a message for my local councillor, IPSEA aren't available till this evening so will try later, also left message on NAS advocacy helpline, but I know that'll take a couple of weeks. Contacted the senior member of the CIDS team and she is getting back to me, spoke to a very nice HT at a school in Dawlish who has been very helpful and is going to speak to another HT at a special school in our locale as to whether there might be a way of getting them to look at T's profile. I know the SEN system is a joke, but the situation is just ludicrous, it is the LEA's responsibility to provide suitable education and the subsequent placements, it is not mine or any parents responsibility if this is not available. I mean for f**ks sake this is a joke, we offer an inclusive policy just makes me laugh, what is inclusive about link education or setting of stipulations for a childs placement in an inclusive school .. hmmm me thinks something is very very very wrong here!!!! On the phone the local rag next ... wonder what they will make of it? if anything ... oopppss slipping in pessimist mode

... well here we go ... Have just come off the phone with my LEA officer ... first time I've actually spoke to her and not the admin assistant, which is a result of sorts ... but the news is not great. - The school we chose after MUCH looking have responded to the LEA noting their extreme concerns that theirs will not be the right environment, and have asked the LEA that they try it for a term, and at the end of that term his situation be reviewed and then it decided as to whether he remain in that environment or he leave and recieve link education either at home or possibly at a PRU as they do not have any other places for him. I have a choice now of whether to agree to this situation, and hope and pray that T can survive and it all doesn't go pear shaped. If I don't agree, they then send T's information to all the schools within our direct locale, even though I have already done this and ALL the SENCO's felt it would be inappropriate ... etc ... and if that draws a blank which I suspect it will, T will receive link education. So pretty f**ked either way ... finding this really hard to understand, just getting over a D & V bug, T staying at my moms as I don't have the energy for him at mo. I just don't think that for a supposed 'inclusive authority' link education is ###### well inclusion ... Back on the phone to IPSEA, and to my local MP and maybe the paper what do you think? HHxx

Great news ... your well on the way. HHxx

If he is still getting incapacity benefit post-school he will be entitled to free prescriptions, if you are on a low income you are also entitled to free prescriptions. You have to apply for the low income free prescriptions ... can't remember off hand to whom, I did it a few years ago .. I'll see if I can find any paperwork still. HHxx

Thanks Annie, Yep IPSEA are on my list of calls today ... HHxx