Sallya Report post Posted February 17, 2005 Hows it going, Rabbit? xxx Quote Share this post Link to post Share on other sites
Rabbit Report post Posted February 17, 2005 Update..... 1. have now enlisted help of local MP. 2. have written to a firm of solicitors whom specialise in SEN Law & Medical negligence. 3. have written to a few other professional bodies.....just hoping they will agree to help us......still waiting for confirmation from one person who would be the biggest help to us in every aspect......fingers crossed. 4. have written to LEA to requset Link Education for J.....this time giving them a deadline to reply by. 5. have spoken to IPSEA, NAS, Disability law Service, DofES and our adoptiuon social worker.......getting him back on board just incase!!!!!!! 6. Not eaten or slept much since.....havent had the time!!!!!!!! Oh & J is doing fine.....infact he has been a very happy chappie today....lots of snuggles and huggles......he even told me it was "time to get the dinner on" at the right time today...I am sooooo proud of him....he is such a cutie.....thats why I will not stop until I have secured him the educational and medical support he needs and deserves. Thanks for asking...... Quote Share this post Link to post Share on other sites
Helen Report post Posted February 17, 2005 Rabbit, You're doing well, you'll get there Quote Share this post Link to post Share on other sites
Rabbit Report post Posted February 17, 2005 Cheers Honey. Rome wasnt built in a day!!!!!!! Quote Share this post Link to post Share on other sites
Suze Report post Posted February 18, 2005 Go get them Rabbit, things have to go your way from now on ,your a mummy to be proud of. Quote Share this post Link to post Share on other sites
helenl53 Report post Posted February 18, 2005 Go Rabbit Go, I read your posting on the Campaim site - very harrowing!. Try and keep your physical strength up - it is really hard to eat and sleep properly at times like this. I think the Crocodile Hunter would describe you as "A feisty little girl" Hugs and warm fuzzies HelenL Quote Share this post Link to post Share on other sites
Rabbit Report post Posted February 18, 2005 Strange you should say that......my dear old pop used to say exactly the same thing!!!!!!!!!!!!! Little Girl????????? You aint seen the size of my BUTT!!!!!!!! Quote Share this post Link to post Share on other sites
Rabbit Report post Posted February 24, 2005 Just thought I would bring you up to speed....its been a busy week..... I have an appointment with MP on Saturday morning....he had a cancellation and has squeezed me in.....I'll be squeezing him if he doesnt pull his finger out and help us!!!!! I have secured a diagnostic assesment....the DISCO...with a CP who was referred to us by Gillian Baird....30th march...here at home....will cost...but hey whats money for???? LEA have referred our request back to panel and we will get a decission on the 1st March as to whether J will be getting link education at home.....HE WILL BE for 15 hours a week....it just has to be put through the motions....his link education starts in two weeks time and we have an appointment on Tuesday with his new teacher who will be coming to the house to teach him....she has ASD experience. So guys a big thanks for all your advice....its amazing how much help and support you have given me....I could not have done it with out you. Oh and just because I have sent of a few letters and the LEA are now playing ball....please dont think I have let things slide....I have not and I will still be taking action against the ###### for all the trauma they have caused us....they still havent agreed that my son can attend the special school before Sept 05 and the LHA are still refusing to provide J with the support he needs.....we will see about that........... Bunny is still battling.... Quote Share this post Link to post Share on other sites
bid Report post Posted February 25, 2005 Well done, Rabbit! So glad to hear things are moving Bidx Quote Share this post Link to post Share on other sites
Sallya Report post Posted February 25, 2005 Thats fantastic, it must be a big relief to be getting somewhere. Well done for all your hard work and not letting them beat you. <'> lots of love Sallya xxx Quote Share this post Link to post Share on other sites
Rabbit Report post Posted February 25, 2005 I have to laugh or else I will cry......GP has just phoned to ask if can help us in any way...... Refer us to CAMHS urgently......reply NO. Refer us to Dr Gillian Baird........reply NO. Refer us to another paed for second opinion.....reply NO. Refer us to Conty based diagnostic centre.....reply .....NO. He did however suggest I sit down, make my self a nice cup of tea and relax.......asked him if he was going to come and make it for me.......Reply......NO. Some ###### help he is....but as he said his hands are tied due to lack of funding..... Quote Share this post Link to post Share on other sites
oracle Report post Posted February 25, 2005 Hi Rabbit Apologies I am miles behind as I am spending most of my day at the hospital with my mum BUT you said Some ###### help he is....but as he said his hands are tied due to lack of funding..... How does lcak of funding stop him from giving you an urgent referal to CAMHS? Or even refering to another pead? Personally I think the guy I full of poop! I have a really good idea of what you could do with the cup of tea he prescribed Carole Quote Share this post Link to post Share on other sites
Elanor Report post Posted February 25, 2005 Hi Rabbit Just a quick response as I should be working - surely you don't have to accept being dismised like this by your GP? Could you complain about his lack of recognition of your real problems, and his refusal to make referrals, either to the practice head or to the Community Health Council/Family Practitioners Council (not sure what the propoer body is these days). I'm certain that he is not permitted to refuse to meet your child's needs because he's not got enough funding - that is his problem, he isn't allowed to tell you its your problem. I'm furious for you Quote Share this post Link to post Share on other sites
Helen Report post Posted February 25, 2005 Rabbit, I really feel for you <'> Quote Share this post Link to post Share on other sites
mossgrove Report post Posted February 25, 2005 Rabbit I am not sure that his hands are quite as tied as he says they are. You're getting to be vey good at this now, time for another round of phone calls! As I am sure you have found out already, it is the parents who don't accept this kind of cr*p that get the best for their children, your son is very lucky to have you! Simon Quote Share this post Link to post Share on other sites
mbrown Report post Posted February 25, 2005 Hello Rabbit, I would agree with all those that have replied. We were lucky in that we got referred at our first time of asking. I say lucky because I know it isnt always the case. I didn't think it was lucky at the time, I thought it was just sensible practice seeing that the GP himself could not make a diagnosis one way or the other. If you wish to make a complaint you could always try the Health Ombudsman at http://www.ombudsman.org.uk/ They can take up your complaint or tell you how to complain correctly. It's a shame that almost everything takes a struggle but we have to keep on fighting till we get there. Good luck Mike Quote Share this post Link to post Share on other sites
mbrown Report post Posted February 25, 2005 (edited) Here is a little bit about complaining more can be found at http://www.ombudsman.org.uk/hse/england/make_complaint.html The first steps - local investigation Involving the Ombudsman Who can complain to the Ombudsman? Time limits The first steps - local investigation Anybody wishing to complain to the Ombudsman must first have put their complaint to the NHS organisation or practitioner concerned, such as the hospital trust, Health Authority, the GP or the dentist. They should give you full details of the NHS complaints procedure and should try to resolve your complaint. If you are still dissatisfied once you have exhausted the NHS complaints procedure you can complain to the Ombudsman. To find out more about the NHS complaints procedure, ask any NHS organisation, GP's or dentist's surgery, or visit the Department of Health's website - www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/ComplaintsPolicy/fs/en Involving the Ombudsman The Ombudsman will not normally become involved unless you have taken up your complaint officially and are still unhappy, for example, because: Edited February 25, 2005 by mbrown Quote Share this post Link to post Share on other sites
Kathryn Report post Posted February 25, 2005 I would agree with everyone, keep on complaining long and loud and don't let them forget you. We have only just started to get the right kind of treatment for my daughter who has AS and is severely depressed after 8 months of waiting and receiving completely inadequate, non specialist support which did more harm than good. We were told we couldn't be referred to the local team for children with disabilities (where, it turned out, all the ASD specialists are) as they had no money till April. We dug in our heels, complained to the trust, I threw a tantrum and said I couldn't cope any more, and we got our referral. My daughter is now in the hands of people who understand her - and it makes all the difference. Don't give up, Rabbit, and if your GP isn't prepared to help you fight - change your GP. Quote Share this post Link to post Share on other sites
Helen Report post Posted February 25, 2005 Rabbit, Here is another link if you're thinking along the lines of making a complaint against your GP: http://www.gmc-uk.org/probdocs/default.htm Quote Share this post Link to post Share on other sites
Rabbit Report post Posted February 26, 2005 Thanks Guys....we are seeing MP at 11 am today....just looked at the time....I must go to bed!!!!!!!!!!!!!!!!!!!!!!!! I have a HUGE list of questions to ask him.....he just better listen or else it will be time for us to take the action we have been delaying.....OFF TO THE PRESS WE WILL GO. Not good for him as he has taken quite a slating lately....not good when there is an election only a few weeks away!!!!!! Will keep you posted. Quote Share this post Link to post Share on other sites
Rabbit Report post Posted February 27, 2005 What a waste of time the MP was....full of hot air....told us he had helped another family get funding to see Gillian Baird at Guys....blah blah blah....he contacted the other family as he thought we could support one another. The mother phoned me tonight and told me the MP was useless.....her exact words were......MP is as much use as a condom machine in the Vatican!!!!!! She had to get a solicitor involved to get PCT to fund diagnostic assessment.....the MP didnt do anything to help them at all. Not going to hold my breath......... Quote Share this post Link to post Share on other sites
Rabbit Report post Posted March 3, 2005 Busy girl here at the Madhouse!!!! Update....just received a letter from MP to say he has been in touch with both LEA and LHA.....just waiting for their responses and then he will be in touch. Had a phone call from LEA yesterday.....J's papers were sent to panel on 1st March for him to be approved for home education...link ed. LEA officer told me that his papers have to go back to panel because some paper work was missing!!!!! Now why doesnt that shock me.....incompetant fools!!!! Just bideing my time........... Quote Share this post Link to post Share on other sites
Rabbit Report post Posted March 17, 2005 Quick update.... LEA have now approved 5 hours a week home tuition.....J is still only allowed two hours a week at the special school.......home tuition people coming out to see us on Monday with the view to start after Easter holidays. LEA refusing to ammend J's statement to name special school as his provider because his placement is not available until Sept...... I had a meeting with the teacher at the special school....she believes the school may not be the right place for J....he is HFA and the majority of children in the class are very low functioning......teacher also believes J is not ready for school!!!! He is 9 and has had the last 6 months off school due to psychological problems caused by the old head master.....so we are still in a tizz and not quite sure what we are doing. Had thought about looking at another mainstrem in the next town.....no school in our catchment will take J because of his ASD.....they all say they have not got spaces for a child with SEN....too many SEN children in the classes that another child coming into the class will put too much of a strain on the tecahers!!!! The only mainstream school has one vacancy in J's school year....but limited understanding of ASD. I can see us ending up home educating full time......J is stuck in the balck hole.....to HF for specail school but cant cope in mainstream........hey ho life goes on.....and so do the battles. CP coming to the house on 30th march to assess....finally will get a dx.....paying privatley to access something we have been waiting for since J was 3!!!!! Will keep you updated as and when things move in a good direction. Quote Share this post Link to post Share on other sites
mossgrove Report post Posted March 17, 2005 Rabbit Nice to hear from you, I was wondering how you were getting on! It is your LEA's responsibity to provide an education to meet J's requirements, not your responsibility to have a child that fits in with their provision. March is already very late in the year to arrange an alternative placement for J so you need to think carefully before re-opening that debate as rejecting the proposed provision is likely to leave you with limited home tuition or an unsuitable mainstream placement at best. The special school in September shouldn't be ruled out as , even if J is much higer functioning that the other children, it will still be an introduction into an environment where he is understood, with much lower stress levels than his last mainstream school. There is also the fact that there is nothing better on the table! If he is not being academically challenged enough, there are other ways of supplementing the provision in that area. From what you have said previously, I cannot see J successfully re-integrating directly into a mainstream environment in September. There would be no purpose in going down that route if he was back at home with his stress levels even higher, and in a mainstream school far from home, where he knows no-one, with little or no specialist ASD knowledge it seems highly likely that would happen. One route to consider is independent schools in your area who specialise in ASD's. I am sure there are some, you'll need to do some searching on the web to find them. You could than say the the LEA that, on the grounds they cannot meet your son's needs within a maintained school, would they please pay for your son to go private. My gut feeling is that you should send him to the special school in september as it will give J experiences of going to school for the day that are not wholly negative. It may be best to view it as something for the next 12 months. You could then spend the next year looking at a more relaxed pace for a more appropriate specialist setting. But you know your child best, and the above may be well off-beam! Good luck with whatever you decide. Simon Quote Share this post Link to post Share on other sites
Beth Report post Posted March 17, 2005 Rabbit, I have to agree with Simon the special school may give you some breathing space. Of equal importance, if the special school has an understanding of ASD they may be in a position to access your son's need and produce a report along these lines. This would be valuable evidence to give to the LEA if you find something more suitable. Hope all goes well. Beth. Quote Share this post Link to post Share on other sites
Rabbit Report post Posted March 17, 2005 Simon.....how well you expressed my exact feelings!!!!!!! I just know that mainstream is not the right place for J.....he just cant cope with so many things at mainstream.....I took J with me last week to pick up my oldest from school.....J was holding my hand so tightly and chanting over and over again....many people....much noise....many people....much noise.... To all that dont't know, J presents as a NT child......until you ask him a question.....then it all goes to pot. He has terrible problems with word ordering his sentences and uses made up words when flustered.....this leaves him wide open to being ridiculed and teased.....not good for his self esteem at all. When flusterd his AS traits come on so strong..... There is a school close by that has an ASD unit for 6 children attached to it.....LEA kept it VERY quiet from us.....the teacher at the special school told me that she thought J would fit in really well there....she has taught in the unit and said that she feels J would be with children who are more like him...HF and on the mild end of the spectrum...only problem the LEA are saying it would not suit J as the children there all have ADHD and have E&B difficulties and J would not fit in in the unit!!!!!!! J has a hard enough time fitting in anywhere....he really is a square peg not fitting the round holes in our area. Our GP's son has ASD....he goes to a really good private school which has an ASD unit attached to it......I can not afford the �12K+ a year to send him there!!!! Our oldest son has just won a scholarship to attend a very well known Independent school....he will be boarding, and starts there in Sept.......I'll miss him so much....but he has been offered such a fantastic oppurtunity and is so eager to escape the house....away from his brother who uses him frequently as a punch bag!!!!! I will bear in mind your advice....see how things pan out for the first few months at the special school and review how J is progressing and settling at the specail school.....if he really isnt settling, we will have no other option but to go back to the LEA and insist they find J a more appropraite placement.....would be nice if they funded J to go to the independent school.....but somehow I dont think this will happen!!!!! Thanks again.... Quote Share this post Link to post Share on other sites
mossgrove Report post Posted March 17, 2005 Rabbit Our son has many of the same issues as J. He is 7, very bright (98th percentile for maths and english) and utterly unable to cope in a mainstream environment. 12k a year is expensive when you are paying your own way, but is not massively expensive by the standards of special school provision. It is possible that it costs less per place than the special school that J will be attending in September. Do a google search for an OFSTED report on the special school, and you will find the cost per pupil in the asessment. As the LEA have already kind of admitted that they cannot offer a specialist placement to meet J's needs, it might not be as implausible as it seems for the LEA to pay for J to go to the independent school. You have the option of threatening tribunal if they fail to find suitable provision. By way of comparison one of the two schools that our son could be going to next year is run by a charity and charges 23K a year in fees. Two of our friends with High Functionin Autistic children have children at the school funded by the lea. One of the children has ADHD as well. The school is all SEN (No mainstream) but I woud not let the sixe of the fees put you off asking the question. In the eternal game of cat and mouse that is placing a child with SEN in a school, threatening to request a place at that school above may well 'free up ' a place at an LEA special school which costs (according to OFSTED) about 9-10k per pupil that would also meet our son's needs. It's certainly worth making it clear to the LEA that you will be asking them to fund a place there if they are not willing to place him in the autism unit. I can't help thinking that if they need EBD's to get a placement in the Autism unit, the LEA only need to put J back in mainstream for 12 months and they will have all the EBD's they need! There is certianly no harm at all in asking what the LEA think. Simon Quote Share this post Link to post Share on other sites
mossgrove Report post Posted March 17, 2005 Rabbit Just been pondering, and another thing about what you said bothers me. no school in our catchment will take J because of his ASD.....they all say they have not got spaces for a child with SEN....too many SEN children in the classes that another child coming into the class will put too much of a strain on the tecahers!!!! The preamble to the SEN code of practive says Part 2 of the Special Educational Needs and Disability Act 2001 amends the Disability Discrimination Act 1995 to prohibit all schools from discriminating against disabled children in their admissions arrangements, in the education and associated services provided by the school for its pupils or in relation to exclusions from the school. If the schools involved said that they were not prepared to accept any more children in wheelchairs there would be a national outcry. The may state a desire not to accept more children with SEN, but legally they would probably not be able to enforce this. The onus is on the school to make suitable provision, not on you to agree to keep your child at home until a school volunteers to take him. Simon Quote Share this post Link to post Share on other sites
mossgrove Report post Posted March 17, 2005 I'm on a roll now! Para 1.33 of the SEN code of practice (legally binding on all schools) All schools should admit pupils with already identified special educational needs, as well as identifying and providing for pupils not previously identified as having SEN. Admission authorities may not refuse to admit a child because they feel unable to cater for their special educational needs. Pupils with special educational needs but without statements must be treated as fairly as all other applicants for admission. Admission authorities must consider applications from parents of children who have special educational needs but no statement on the basis of the school?s published admissions criteria. Such children should be considered as part of the normal admissions procedures. Admission authorities cannot refuse to admit children on the grounds that they do not have a statement of special educational needs or are currently being assessed.. Simon Quote Share this post Link to post Share on other sites
Helen Report post Posted March 17, 2005 Rabbit, Sorry that you're still having a hard time with your LEA <'> ...LEAs really do know how to cause maximum upset to famlies don't they, you have my sympathy <'> On a more positive note I must congratulate your eldest son on winning the scholarship You must be bouncing with pride! ... and as for Simon... well, he can always be counted on to give excellent advice and support! Simon you are great! Quote Share this post Link to post Share on other sites
helenl53 Report post Posted March 17, 2005 Hi Rabbit, My boy was in an independent school until year two - funded by ourselves. This was pre DX. Still p re DX, he started to run into big trouble with teacher and peers in year two. I asked school to give support and treat him as if having ASD - no way Hose - they said they were a business! - nice one - In my ignorance, and believing the government patter "Every Child Matters" - I phoned LEA and asked them to put dosh into school to help them meet J's needs. No way Hose - they say - got to put him into one of our schools to get help. Did that - ended up with a messed up kid after one year. By this time I had written off Independent and Maintained schools and thought it was only specialist (residential- as there are no suitable special schools that would suit him in our area) or home ed. Found out about an independent school with excellent SEN support and he started last September. He is doing fantastic. I have named the school at Part 4 of statement - LEA say "no way Hose" they named a school that I went to see yesterday. Open plan classrooms, narrow corridors and all things deemed to send our kids off on one. It was very noisy and I did wonder how the NT kids coped. No quiet or safe place - everyone has to go out into the playground for fresh air. The headteacher told me that they had had ONE child who had been successfully included - but he had 25 1/2 hours one to one. My job is to prove that NO MAINTAINED LEA school can meet his needs and that only the independent school that he is at will sucessfully include him. It will go to tribunal and I hope that we are successful but LEA's seem to get the red mist when they see Independent schools mentioned - they seem to have the idea that you are trying to wangle a private education for your child. If you do go into the private sector,(before proving that it is the ONLY school that can meet your childs needs) it will be a struggle to get the LEA to fund the place. Best Wishes HelenL Quote Share this post Link to post Share on other sites
Rabbit Report post Posted March 17, 2005 Having spent the last three years studying the Cof P....I find myself constantly reminding all those responsible for my childs education the parts of The Childrens Act, Cof P, Human Rights Bill, Diabilities Rights etc etc etc ......where has it got me????? Answer.....no where!!!!!! What do I know about education?....I am only a mother....and a mother with a child who does not fit any of the tick boxes!!!! I had a conversation yesterday with our community pead.....he told me I was wasting my time.....J will never be a brain surgeon will he.....B@st@rd!!! I know my son will never be the brightest of the bunch....but I darn well know I will do everything in my power to ensure J gets all that he deserves. No matter how many doors I bang on...who ever I contact....I just get the doors slammed firmly in my face.....not a happy bunny at all and will NOT give up my fight...... Quote Share this post Link to post Share on other sites
Carol Report post Posted March 17, 2005 you go girl - hang in there - I really admire your spirit & obvious desire to be the best mum in the world for J - & you are being Carol Quote Share this post Link to post Share on other sites
mossgrove Report post Posted March 17, 2005 (edited) It probably doesn't seem like it right now, but J is a lot better off than he would have been if his mother wasn't fighting so hard for him. Simon Edited March 17, 2005 by mossgrove Quote Share this post Link to post Share on other sites
Rabbit Report post Posted March 17, 2005 Believe me I know!!!!!! When he is fast asleep I sneak in and take a peep at him. He is so restful and looks so calm and content snuggled up in his tent!!! Yes I said tent....thats where he sleeps....better than the cardboard box he slept in for a while!!!! While I stand and look at him.....I feel so much sadness for him....sadness that he isnt being given all the oppurtunities he is entitled to.....that is what fires my determination even more.....I want him to be happy and content when he is awake. The whole system sucks and I honestly can not see it getting any better..... Quote Share this post Link to post Share on other sites
helenl53 Report post Posted March 17, 2005 Hi Rabbit, You just keep going girl - who gives a ...... if our kids don't become brain surgeons - did we want them to in the first place? You just keep enjoying peeking in on your little one - he is not a problem - it is the corrupt screwed up system that is his problem. Best Wishes HelenL Quote Share this post Link to post Share on other sites
Rabbit Report post Posted March 22, 2005 I had a meeting yesterday with the LEA officer, EWO and a ASD Advisory Teacher. They all came to the house. 15 mins before their arrival J went into meltdown because he couldnt find a vask????? I spent 20 mins trying to calm nim down and then worked out a vask is a flask!!!!!He wanted to make a cup of drinking chocolate and put it in a flask?????Why I dont know but thats what we did.... J disappeared upstairs, refusing to acknowledge the visitors. 15 mins into the talk, J came back down into the living room....shouted at the ladies to take off their shoes....the proceeded to vacumm the longe carpet to get rid of their germs!!!!! I just sat and let him carry on!!!! Each and everytime we have seen any professional it has been on their ground....and each time J has been withdrawn and quiet as a mouse....I let them see J how he really is. Best comment of the day....."has anyone ever suggested Aspergers to you!!!!!!" Ive only been trying to get him dx for the past 4 years!!!!!! Any way the meeting went well.....home tuition starts after Easter....they expected me to pop J into a taxi and send him off to the town centre unaccompanied to attend day school 3 times a week.....I think not!!!! He is 9 and no way would I let him go unaccompanied with a taxi driver I dont know......there is no way J would go without me anyway. The building they use for day school is right in the centre of our town. You can not drive up to the building and the nearest car park is a 5 minute walk.....J is a runner....so I expressed my concern that what would happen should he run off....far to dangerous for him to be foot loose in the town centre. The building itself is not secure so finally it was agreed taht J would be receive link ed at home. Then we moved on to his placement at special school......still a tad hazy about whta is happening.....they agree J is to HF for special school but that he can not cope in mainstream, even with full time support. They are suggesting a 50/50 mix....but we will cross that bridge in a couple of months time. EWO is however goping to ask the special school if they will have J for two morning sessions a week....so he will be geting educational input everyday. So finally after 6 months of battling to get J his link ed at home....we have it.....so much for the DofES stating that link should be provided after 15 consecutive days away from school....ha ha ha...that laughter is sarcasm if you didnt realise!!!!! Onwards and upwards....September is not so far away now....I think I will just give up my battle to get J into the special school before the end of the school year....he is sooooo happy at the moment and the summer is coming.....long lazy days at the beach will be fun.....in an educational way of course!!!!! Quote Share this post Link to post Share on other sites
Carol Report post Posted March 22, 2005 so very pleased that you & J are starting to get what you need Carol Quote Share this post Link to post Share on other sites
oracle Report post Posted March 22, 2005 It's start but my goodness how hard has it been to get to this point! Well done and keep at it. Carole Quote Share this post Link to post Share on other sites
Helen Report post Posted March 22, 2005 Then we moved on to his placement at special school......still a tad hazy about whta is happening.....they agree J is to HF for special school but that he can not cope in mainstream, even with full time support. They are suggesting a 50/50 mix....but we will cross that bridge in a couple of months time. EWO is however goping to ask the special school if they will have J for two morning sessions a week....so he will be geting educational input everyday. Rabbit, Even though it's late in coming, it's good to hear about this alternative suggestion for J's education - he's tried mainstream and home ed. perhaps this new suggestion will prove to be worthwhile, good luck with it. Quote Share this post Link to post Share on other sites
