ksasnic

Sorry if this has already been posted before but it is important... Whilst over on thetazbar.com in the forums I saw this - A member has started a petition to the PM, asking for services and provisions for children with AS to be re-looked at... Can you please read the petition and sign it if you agree? Hi thanks so much for helping out, basically my son Charlie is non-verbal ( he's 6 years old) in September 2006 the PCT stopped all Speech and Language Therapy for 5 year olds and upwards in mainstream schools, obviously if its written into your child's statement ( part 3 - education provision ) then the LEA have a legal duty to provide it! ..... they have refused to put extra provisions in place until April when the PCT and LEA can fund it jointly, even when April comes our children will still not get the adequate provisions because SaLT is seriously under funded - my sons last 2 visits from his therapist were June 2006 and November 2005!!! The reason for this petition is really because it just seems that LEA's and PCT's never seem to accountable for their actions ( the secretary of state i've been told cannot reprimand the LEA over past performances so he will not get involved ) all the while our children suffer the consequences!! Their statements aren't often worth the paper they are written on! to sign my petition go to: petitions.pm.gov.uk/spectrum thanks alot for your support! Name deleted, but it is on the petition on line. To sign the petition, you don't need www. just petitions.pm.gov.uk/spectrum Thanks for your support in advance. http://petitions.pm.gov.uk/spectrum/ I think we all need to be in on this so far there are only 200 or so signatures lets get more as this may affect us at the present or further down the line.... Thanks Autism Awareness over on Tazbar for bringing this to our attention...

I am a little confused again... Nick had his secondary transfer statement review... Which went very well.. There was his Headmistress and senco and teacher then there was the new schools senco, the Salt and also someone from autismn outreach.. Autismn outreach man said that having seen Nick he is certain that Nick has aspergers and agreed that the diagnosis that Nick has is just another way of saying it !!! So really good there.. only thing is last day of term I had a report from the Headteacher about what went on etc... There is a list of who attended etc... The list has everyone but the one who I really would have liked to have seen on it.. and that is the autismn outreach man... I was hoping that I could use the form to help me with re-claiming his dla... You know all the help I can hand them to help them understand Nicks problems and needs.. So now I have to go back to the headteacher and ask her why she didn't add his name on the list.. and that I want it added and for her to re-issue it to all the people that need it.. I so want to see what his report will be and also for the Salts report as they both had something to say that would help Nick get the help he needs.. As it was the salt did shock me as he pointed out that Nicks speech and language skills are of a 7year old and below - Nick will be 11 in March ! But having said that the really good news is that Nick WILL be going to the school we want him to go to - It is a very small school in comparrison to his catchment area only around 450 as opposed to 1600.. with a very very good special needs provision and a really great senco so lucky again on that point as his present schools senco is very good too. Just have to fight for transport help as its not very clear what help he will be entitled too.. So tomorrow I will be away to the senco and headteacher to ask them to add the autismn outreach mans name... Heres hoping that they let me know something.. they have also asked to up his hours help from 10 to 20 as they all feel he needs that and more due to his constant need of prodding to keep on track as he is bad at independant working. Well back to it - school back tomorrow...

Ditto D's mum.. It seems that the dad has issues that he is pinning onto your son. Does your ex have any idea what its like for your son ? I'd inundate the bleep with loads of information just leave it in your sons overnight bag when he goes and stops.. enlist the help of others who may be able to get through to him... just leaving the literature might be enough for him to pick up when no-ones looking and give it a read... What does your son think about the school ? If he is all for it maybe ask him to write to his dad about it. Good luck and in the mean time big hugs... <'> <'> <'>

Great news about the school.. As to the taxi.. is there a way that you can speak to the taxi people and explain that maybe it would be for the best all round if your child could be in the front... no kids next to him etc... eitherway a chat with them, pos backed up with a dr note explaining his difficulties being next to other kids may help.. Is the taxi going to be a car ? as I know some small minibuses also are termed taxi... Having said that after a while of travelling with the same children every day might calm him as it will be a routine and so he might become more accepting of the taxi ride... Good luck.. I am now fighting for a taxi for my little urchin for next September as he will then be going to the school of our choice... yay..

Thanks all.. Nick is ever so pleased as he really likes his soon to be new school so still with fingers crossed as to when he hears properly that it has been approved...

Chriss my son is like this too and he has been dx with Inattentive Attention Deficit Disorder.. He richochets of the walls at home, seems to have boundless energy and yet can sit down and watch a dvd quietly as you like... Autism outreach bloke who Nick sees sais thats normally the case that school doesn't see what the kids are like after school when they unwind from coping all day..

Have been told by Autism outreach and a few consultants that generally they come in threes.. kids with AS have high chances of having ADHD/ADD and dispraxia as well ..

slightly confused but thats my fault for not being on the forum much until recently.. If you do not wish to see the twit (I too had a twit) you can ask for a second opinion as you are unhappy with 'twits' actions/dx/face etc... granted you are back at the beginning but at least twit will not be there... upsetting everyone.. We are going down this route as our twit spent all of 5 mins with Nick before coming up with his dx of computer says no.... despite clinical psychologists, consultants god knows how many salts, ed psychs, teachers, senco, other AS parents, paeds of all varieties and other official bods and now most recently an autism outreach worker all saying yes !!! i have been accused of cancelling appointments, discharging my son from services etc - all lies !! I did refuse a second opinion though from a neighboring part of the county as it would be the same twit re-assessing !!! so now awaiting an appointment with ********** in Newcastle... If I am getting this wrong many apologies... ooh yes a senco told me that there is this every child matters law part of the childrens act which is handy to spout at deaf consultants etc... not sure what it is exactly but may hold a key to something... good luck. (Edited by moderator to remove name of professional.)

Sounds crazy - i would tell them that the decision was made in your favour and that their losing your file is their problem - if it is not sorted within x amount of time then you will be going to your mp and will be speaking again to your solicitor with regards to filing charges of ??? but i am sure your soloicitor would know what to throw at them... even as a threat.. would say if you lived near the offices get a whole group of you together and go and visit them, making sure that anything goes.. they may deal with it quicker just to get shot of you.....lol It is totally disgraceful how you are being treated though ... bloomin stupid... Fight the good fight and good luck...

Nick had his secondary transitional statement review today and I cannot believe it - good, very good.. Just had to share. We live in North Yorkshire but he goes to school in West Yorkshire so everything goes a bit confusing.. But the senco of the school I want him to go to turned up and the speech therapist and a very nice man from Autism Outreach !!!! Nick is still waiting his second opinion with Ann le Couteur so at present he is classed as ???? but Autism outreach said that all what the teachers were saying and various reports and even the dx of social interaction and communication problems along with the ADD told him that Nick was Aspergic.... hallelulia !!! felt big relief at that as here is someone who deals with autistic spectrum kids who agrees that Nick is on the spectrum... (just adds to the list of other professionals who agree with it as opposed to the git who holds the power in his hands who said no !!) He was a really friendly man and what he said with the headteacher and Nicks present senco was just the icing to the cake... the speech therapist did say that Nicks comprehension language skills rated him at about a 7year old which did shock me somewhat as he is 10 and a half.. but hey he did say that these tests are not really conclusive as they are dependent on various factors etc... When asked whether Nick would get a place at the next school new senco said there will be a place for him.. which is brilliant news so that school will be named on his statement and then fingers crossed as to whether the LEA will approve.. New school is now at least in the right county... The new school is a pretty small school with around 450 pupils which Nick is so happy about.. Otherwise its a school of over 1500 !!! just have to get the transport help now.. They also said that Nick wont be taking his sats as they feel it will be too stressful for him and as he cannot concentrate for that long in test conditions it would be very unfair on him.. Must admit am relieved at this as I do not think they would get a true reading of Nicks capabilities.. They are also plugging for his hours to be upped.. The new senco said she would dearly like Nick to have 25 hours- full time help as Nick has Inattentive ADD and needs constant prodding to keep on task. And to help with this she told them to mention the Every Child Matters ruling.???? Never heard of that one. Also the good news is that West Yorkshire have changed their procedure now the autism outreach dept can be brought in regardless of a dx which is about time.. just wondering if that will follow across the board in North Yorkshire.. Eitherway The autism outreach and speech therapist are both going to write reports to help Nicks case... Anyway its all a waiting game now just to see what the LEA say.. Funnily his new school is a faith school which after seeing the reports in the papers over the weekend about children in faith schools doing better than in other schools I feel sure that I have made the right decision... Just feel that half the battle is over or at least nearly over.. Well sorry for the waffle just am sooo pleased that at last things are looking up for Nick at last...

I am too in this very difficult situation. I have to choose a school for my son... I went to look round one with a special resource unit and to be frank I left and burst into tears.. the person who ran the resource unit basically didn't want Nick at all. My fault for explaining his needs etc before the look round. she kept me waiting 10 mins at the beginning then rushed me round the school dumped me in the reception area for 20 mins while she took a call. then in the reception area asked me whether I had seen enough so I pointed out that I would like to discuss their senco practice etc finally taken into a small room and there she proceeded to tell me in a roundabout way yet the implication was there that I was molleycoddling my son and am putting on my worries onto him and that most kids had no problem away from mum etc and that he would not have any problems getting the bus to school either despite it being a public bus and not a school only coach. !!! I was gobsmacked as she also kept pointing out the negative side of the school and as to my question on lunchtime supervision as this is on my sons statement she basically told me that they don't provide this but when I said if it is on the statement then they have a duty of care to fulfil that need in the statement etc her reply was oh we have ways round that !!! At that point I told her that there was no need showing me round any more of the school as it was quite obvious she just didn't want my son there and left... I was fuming, shocked and upset... It didn't help that this came at a time when my friend had told me that she had a major row with a now ex friend of ours because this so called friend had said I had caused Nicks problems. Felt so flat afterwards.. and mad.. How dare this bleep who knows nothing of my sons difficulties treat him and me in this way.. and that goes for both the school and the now totally ex friend.. Problem is that I really thought that this school might have held a bit of the key to Nicks placement now it is sooooo off the list.. I am to arrange an appointment at a special school with the parent partnership lady but am now scared that they will not think him shall we say special enough and so mainstream school will be the only option. if so the school that I looked round was his catchment school... arghhh I just don't know what to do... have heard about dual placements but then how does this work for secondary...I think this might be an option for Nick as he would be at a special school (if I can get him in) and then at a mainstream school to help him with his social skills - oh god sorry I am now rambling... I know though that he wants to go to a smallish school as he goes on sensory overload but where are the smallish schools these days.. 1200 is the size of the secondary mainstream ones and thats just about 1199 too many !!!! anyway sorry for the rambling - any help please though would be totally gratefully received

Sorry but having one of those days find out that Nick's referral wasn't done !!! so for the last 7 months we thought he was on the waiting list only to find he wasn't !! I am ever so p****d off ok sorry annoyed... I then find out that the team that he was supposed to be referred to are meeting this monday to see who they can add to their lists and offer an appointment. I phoned up my surgery to enquire why the hell they hadn't done the referral only to be fobbed off and then told that a dr would write it that day and fax it through... ha phoned up on friday to be again told the dr didn't do it yesterday as promised and that he can dictate the letter today somewhen if he has time and that as there are no secretaries in to type it up it seems unlikely it will be done in time... I got so fed up I basically said that the letter had better be done today ready for the secretaries to type it up first thing on monday and fax through first thing and hopefully it will arrive in time for the meeting.. otherwise I will be taking this further as they have failed my son and it was not acceptable.. So now I am really feeling the strain... I had hoped his referral would have happened by now and even maybe had the appointment ready in time to help me choose the right secondary school that he will go to next september... so I have to look round schools and re-assess which ones were on his checklist as the main one apparently is having its special needs resource unit phased out next year... Oh blimey not sure what I am doing to be honest... would prefer him to go to a special school as his needs are complex and I know a large school would scare the begeebers out of him.. Also on top of that the dreaded renewal form for DLA has come through again and so am worried about that stopping again and we will suddenly be told when I eventually fill it in that its stopping so more added worry... Anyway sorry about the waffling and ranting just needed to let some steam off... And as they say back to the old drawing board.. Any advice about who I can sharpen my harpoon at about this referral etc would be grateully received Love and blessings all

Playtime and lunchtimes are very difficult for my son too. He is supposed to have a lunchtime helper just for him but the school say that they are going along with a non invasive type of help ????? which means that whoever is supposed to be there for him is actually either playing games with other children or is someone who is the dinner lady who is looking out for everybody else and so not specifically there watching and helping my son..So my boy never really knows who is supposed to be there for him and eitherway they do not understand my sons problems. He used to have a chill out table in his previous year and the teacher then was brilliant- totally supportive, understanding and encouraging now the new teacher seems not to really understand and so my son is forever coming out of school with either a face full of thunder with my daughter and I waiting for ww3 to ensue or totally devastated and bursts into tears...I have a very nervous feel about this year as opposed to last year when I felt far more confident in the teachers abilities. Last year he had a small amount of homework suited and I think adapted in part to him but so far he has been sent home with a homework book and a list of about 9 things he must do during the week, these things are very advanced for my son especially the writing part and the explaining what he means but hey see what he has this week probably have to go in and have a quiet word with the teacher... Sorry for the longish waffle - suddenly got sidetracked... A chill out seat or place where they can go to without it being a big thing worked pretty well for my boy. I would try and get him to tell the teachers whats happening but by the time he had tried to get out what he wanted to say the teacher/assistant had lost patience in waiting for him to explain his thoughts that they would just tell both parties to stop it ! so now I think my boy just suffers in silence.. All is done on any other time is they say they will have a word with the person involved and thats that- no punishment for the person just dont do it again and then its back to square one its so unfare... Anyway if you find any more ideas let us know good luck

Good luck in whatever you decide.. It is a very difficult choice. I am wondering what to do myself for my son in his next school. I have until the 20th of October to have decided where I would like him to go and so far the deadline seems fast approaching with me no far forward as I was when I received the booklet last week telling me that I have to decide soon.. Does anyone have any ideas of who would be the best person to have a chat with about this.. I had thought about seeing the senco at his school he goes to now but as he is schooled now out of county due to our moving and him staying at the school he is settled at. I am not sure what to do. Ideally I would like him to go to a special school with smaller classes and where the teachers can give him the appropriate support but hey they seem to be very few and far between. Did find a nice school but it was a private independant school which had a unit attached to it where it teaches around 4 students with A.S related problems. but as its a private school I am unsure on how the fees would work and would my council help fund it as it too is out of county. I have loads of questions, very few answers and feel totally swallowed up by all the possibilities... So if anyone can help please I would be very grateful.. We live in North Yorkshire now and my son goes to a school in West Yorkshire if that helps... and the school we like is in west yorkshire as well.

Hey madmooch Instead of "No officer, my top acccidently fell down" reckon it should read "No officer, my top acccidently fell up !!!!" watch em try figuring that one out lol

Hi, Rambling is fine I always ramble on so can fully understand lol As to a job - I sidetrack here have you thought about buying and selling on e-Bay. I have a friend who does this legit she has just started out but it means she is working and can claim working tax child tax etc and get some housing and council tax benefit but the best is she fits this in when she wants to.. granted she has a morning job but with e-bay the hours are of your choosing so when your little boy is at school or gone to bed an hour here and there can have your paypal account fairly bristling.. Just a thought. Oh yes to the ramblings I have just received my renewal form and its already making me feel nervous.. first time we just got middle care then last time we were refused so I asked them to take another look at it and we were allowed it middle rate care and lower rate mobility... very lucky but as you point out if it were to stop I havn't a clue where we'll be.. as its a big chunk of our finances.. take it away and more stress so more freking out by my boy and less cubs which has been really helpful for my son. Granted he has now been dx with Inattentive ADD but due to funding the clinical pschiatrist who only spent 5 mins with him and the rest asking a very nervous mum -ie me who's mind just went blank as to what I meant to say... said he didn't fulfil the criteria but it is acknowledged that his problems are complex and that he has special needs which demand 1-1 attention at school and close supervision at home.!!! ha despite the consultant, ed psychs, community paed, another psychologist, salt etc who said yup he did have - hence the funding pointer !! Anyway good luck with it all...

Oh yes forgot to say and on passing birds after the cat got them....lol

I love the bach flower remedies - think I was high as a kite when I passed my driving test first time.. I kept dabbing the old rescue remedy to calm me down... Have used it on the cat getting him to the vets and also on Nick when he's being difficult.... lol

Teeth killed is Nicks fave... I am going to have a tooth killed today he would remark to anyone who would listen and then would beam proudly.... no sweety its just being pulled.. Anyone though would think mass murder and torture was then happening with his NT sister as he would then tell them she has to have 4 teeth killed before they wire up her mouth with elastic bands.... hmmm

Oh Board I am sorry to hear of your sad news.. Cry when you need to and remember the happy times and also the silly times... You are allowed to feel all the emotions you are feeling so go with it and take each step a little at a time... Big <'>

Harry Potter has to be Aspergic !!! check out order of the phoenix chapter 26.. lol and as for Ron Weasley he's probably aspie too as he thinks like Harry !!! Any thoughts...

yup Nick had jaundice for quite a while past 6weeks check.. they just kept an eye on him he also had a few breathing problems... holding his breath a lot that at 2 weeks he was re-admitted for observation and sent home with an apnae monitor.. they only checked hearing at 6 weeks check I did notice he had a bit of a hearing problem at the time but that seems to be ok now as at 2 he had meningaccoccal sceptacaemia and had to have many hearing tests even had some with the first consultant for speech probs...

what a good idea... how did I miss that one.. - I will look him up first thing in the morning now.... thanks - and no newcastle is certainly not very close to us so unsure of the procedure hope he comes to us and not the other way round !!! oh well eitherway at least its a start as most people I have spoken to say that social communication and interaction etc is on the spectrum... oh well off to sleep now..

Well got the letter back from the consultant who have now titled Nicks dx as ' difficulties with social communication and social interaction. Complex speech and language difficulties and Inattentive type Attention Deficit Disorder... Then he waffles on about his past history.. about his statement and it seems that they have upped his support 5 hours now to 15 !!! unsure what or when or why that happened - not complaining though.. and now I am getting nervous as they now want to refer Nick at last for his second opinion to a professor AS Le C........dept of pyschiatry research, child & adolescent Mental Health way up in Newcastle !! I am just feeling apprehensive as the other appts have been a big let down... scared this one will be too.. or they say I am mad its all in my head..bad parenting etc you know the usual fears !!! well no doubt will have to wait another few months/years as we havn't even been referred to him/her? yet.. has anyone heard of this person ? I have altered the surname as unsure what rules are on names.. suffice to say the person sounds very french !!!!

on an off note how does that apply to someone with tourettes ???? !!!! and as to the my kids havn't heard swear words yet... just go along to any school now and kids as young as three even younger are using the word... always wondered what the child thinks of when confronted with other kids swearing ? my friend was convinced her child never had heard the word f*k but yet was overheard shouting to another child f*k off I hate you !!! this was brilliantly ignored by the mum and we only knew it had been registered by her by her red face and the stammering that happened straight away after !!! Nick used it once and I asked him what did it mean his reply was I don't know... so for him any kind of swear word is similar to saying table, chair nose pickings... it doesn't have the same meaning to us... and yes he sniggered while saying it and so I asked too why did he snigger his reply I don't know - they laugh so I laugh !!!! says it all really so I try not to make a big thing out of it and yes I do use it occasionally when i have shut my hand in the cupboard door or trodden on another toy -lego being the worst... and if it gets picked up I said i needed a word which was a little more than ouch !!! and then he goes away as if nothings happened...leaving me wondering whether I had any kind of conversation with him at all !!