fiorelli

I'm not being hard on myself Bid - I'm being honest. And it can only be for the best hey! What is it they say? "Onwards and Upwards!" I just wanted to apologist to those on here who have given me advice in the past and may have begun to think that they have been speaking to a brick wall!!

My husband loves music, I have lost count of the amount of CDs we have. He much prefers music on to the tv. He's not bothered about what music either! My sister likes music too - especially when she has a glass of wine inside her DS1 will listen to music - although it has to be what he wants to listen to. DS2 loves music, just like husband - although is just as happy to watch tv. DS3 likes music too. He likes it best when it is kaiser chiefs playing on the cd player while he is playing with his toys. DS4 likes his 'head, shoulders, knees and toes' cd. A CD full of kids songs (Must admit I like to boogy with him while this is on!) My Mum likes Michael Jackson music - will listen to it till the cows come home. My MIL loves listening to Status Quo - was quite funny at the weekend when it came on the radio - she turned it up really loud and started dancing to it!!! I like music too - just like my husband I will quite happily listen to anything, and prefer it to the radio.

I am slowly getting sick and tired of my heads ability to hear what it wants to and not what is actually said. 2 cases of note. L has Autistic Spectrum Disorder. Asperger Syndrome was only mentioned by the paediatrician as a possibility after she had seen his educational stuff. This only became apparent to me after I recieved a copy of a letter from CAMHS saying L has ASD. L has Severely delayed receptive and expressive language. He was diagnosed with this in September last year. After I had paid for a private SLT to assess him. However, I remember reading the letter she sent me afterwards, and I remember reading that he doesn't have a problem with saying his sounds etc, I also remember her recommending a certain school we didn't want L to go to. I also remember thinking that I didn't really want this letter to get into the hands of the school. I put it back in the envelope. This was September 2008. I found the envelope a couple of days ago. I actually read the full report - which I thought I had done before. However, it quite clearly says that although L's speech is fine, he has major problems in his receptive and expressive language, and lists around 6 interventions to help him. So for the last 7-8 months we could have been helping him, and we haven't because of my stupid ability to hear what I want to rather than what is being said. So apologies to all on here. I am pretty certain that over the years, you have probably all given me some really good advice, but as it wasn't what I needed/wanted to hear, it probably got overlooked. Sorry. Now I need to try and work out what to do about this SLT report.

You will see in my signature at the bottom of this post the list of dx's my son has. The Asperger and ADHD dx was noted on the same report as "Autistic Spectrum Disorder (Asperger Syndrome)" then "?ADHD". This diagnosis was made by the paediatrician at the hospital. A few days ago, I was given a copy of a referral letter that his CAMHS doctor wrote. in it is says "In 2005, we diagnosed L with ASD and ADHD....", they were the 2 dx's that were consistently referred to within this referral letter. Now, I remember when we first started going to CAMHS, having various meeting over several months, then both us and school filling in several forms. then discussing the outcomes from it. Does it sound - to you - like he has had a second person diagnose him with ASD/ADHD? (I will be asking CAMHS these questions when I manage to speak to his psych.) Also, does it sound - to you - like he has ASD rather than AS? Cheers, fi xx

I remember '999' days well! Luckily(?) my son now hates anything to do with phones and will avoid them at all costs! Just FYI, if you do lock your phones, it won't affect being able to dial 999/112. In other words, you will still be able to phone emergency services. Same when you lock the keypad on your mobile phone! Next time you go somewhere and can't get a signal on your mobile, have a look at it - it should say something like 'emergency calls only'!

ooh, I wonder why the 'offline for maintenance' didn't work for me then????

Did anyone else try to get on earlier and get a basic black and white layout with Lufty as the only member? And when you tried to log in it didn't recognise you? And When you clicked on the one and only post, it was from Invision welcoming you to invision?

L is in year 5, will be in year 6 in September, will start secondary in 2010. I recieved a letter from the LA today, I am now officially freaked and don't feel like I have the time to look properly!

This particular course is being run by 2 people in L's school, 1 of which knows L very well (don't really want to go into too much detail for obvious reasons). I have gone into the course knowing that it is an australian originating parenting programme, that in some countries it is actually the course of choice parents are sent on by the courts, that some of the strategies may not be suitable, that in some parts it may be like showing granny how to suck eggs. I have gone into the course hoping that it might make me think more about how I behave and react, how I can alter/change/implement things should I need to. I am however finding the videos they show us VERY staged. They could have been done so much better I feel. I am also finding that we are already implementing a lot (Not All!!!) of what they suggest. It is 'interesting' to hear other people's 'stories'. It is good to be able to suggest something to them that they might not have tried. It is also 'good' to tell our story and have others give us some suggestions too. You are right though about finishing to course in order to keep the 'professionals' on-side. But then I have 3 nt kids, so what might not work for L through the course, may be useful in dealing with the others. I'm all for giving something a fair go before making any judgements on it.

I am currently taking part in a Triple P programme. We were asked a question in our last session: "What physical affection to you currently show your child?" My answer was "A Hug. Twice. Because his keyworker was stood right there when I asked him for a hug goodbye." L physically freezes whenever you try to touch him, or he will move away. I have gotten used to having no physical affection with him - but I never give up trying. However, the looks and comments I got from others in the group was that of total disbelief. Thankfully his keyworker 'backed' me up and said that he is the same there. My homework this week is to work on giving L a hi-5 whenever he does something well. hmm.

Thank you all for these, they are just what I'm after. BD, thanks for the link to the other thread on this subject too!

Instead of having to fight, prove a case, listen to excuses and then wait on a huge list.... L is having a new 'full' ed psych assessment in 4 weeks time (next time he comes into school). The last time he had a detailed EP assessment was 4 years ago for the assessment for statement of SEN. I am not holding out too much hope that this 'full' EP assessment will be exactly what I would like it to be, or that it will give me any clear answers, but hey - he's being seen! Oh, and fingers crossed it's the same guy who checked his maths and pulled the school up on a lot of problems in just that one area a couple of months ago!

Was wondering if you could help me please? I am currently doing my Adult Literacy Level 2 course, and as part of that, I have to choose a subject and prepare a portfolio on it. I have chosen (surprise! Surprise!) Autistic Spectrum Disorders. I am trying to put together a information leaflet giving brief information about ASDs - what they are, what it means, common misconceptions etc. So I was wondering if you can help me by telling me what wonders you have been told/heard said about ASD, I'll start so as to give you an idea of what I'm looking for... Ooh, that means you're a genious doesn't it! (in relation to Aspergers Syndrome) He can't have that - he talks! (in relation to hearing someone has Autism) Thanks for your help! Fi xx

She got back to me with the advice from the legal bloke, that if am I ok with it, to keep things as they are, not try to get any amendments to the statement as it stands, get another years boarding placement, and then we'll be in a stronger position when it comes to secondary provision. I really don't know how much more of this I can take. But I suppose as long as L is relatively happy with where he is (and as far as I can tell, he seems to be, the fairly rigid structure seems to be doing him good, even if his grades aren't improving) then that is all that matters for the time being. I'll try and remember not to come on here and moan again about his school (that is until we're at the year 6/7 transition this time next year) I'm going to use the time to really research different schools both near and far (well, as far as I'm happy for him to go that is...)

well, I have done a couple of things today. I have spoken to ipsea (after spending most of the morning ringing up and getting an engaged tone! And then when I finally managed to get through, they were having a problem with their phone so I ended up getting cut off!) Lady I spoke to was very nice. Managed to listen to my ramblings and take notes AND give me advice too! Basically, she said I need to try and get a water tight case for a school for Sept. 2010. She is going to speak to their head of legal/law about the resi situation and LA's refusal to put onto statement. Whilst at it, she also gave me advice on what to do with regards to L's annual review in May, and what to do if there are any problems. As a result of this, I have e-mailed headteacher to ask for a full educational psychologist assessment of L, especially as his last one was in 2005, so as we have a clearer picture of L's needs so as I have an idea of what I'm doing in the annual review. 1 question for you - does anyone have a template letter for asking for copies of child's records from school? IPSEA recommended doing this so as I can go through it for my report for the AR.

You are right. and I do need to go and look at some. I am going to spend the day searching and phoning around some schools. L is currently at an LA school as a boarder. I am assuming that the LA are paying for this, as we aren't. I tried to get it written into his statement last year, but was told that as it was a 'voluntary' placement, it didn't need to be. My thinking is that he wouldn't be there if he didn't need to be. The keyworker and head of Care have both said they would like to work with L for a long time to come, and said that if I chose to send him to a specific school that has residential, they would back us (unfortunately, said school is a BESD school, and won't even let you look at it until you have told the LA that you want to note your intention to send your child to this school). My thinking is that they would be pushing to get him out of there if he didn't need to be there, as LA would be up in arms about funding. I am hoping that it will help us when it comes to tribunal, but was wondering if anyone knew either way. I've actually just decided to try a couple of education helplines to see if they can help clarify anything. fi xx

oh, next annual review is set at May 7th. (date may have to be changed though so my husband can come) I am going to have to look up the 'procedures' for annual review. Not once have they done it right, and I am determined that they are going to this time. Oh, and there is a new headteacher now to when L first started. Hence the difference in opinion.

Thank you all for replying yesterday. I'll try an remember all the points people have raised and answer them as best as I can. I think the first being about 'what has the headteacher put in writing'. Well, he has put in writing that he apologises for not being suficiently alert to L's pain threshold problems, he feels L has improvd in his behaviour in school sufficiently enough that his BESD needs in statement are 'well on the way to being overcome', and has suggested that an MLD school be the right place because of his 'record of good behaviour, overall vunerability and trusting, socially imature nature' and because of this they feel he is a 'vunerable child' schools. I must admit that I have absolutely no idea what I'm doing. When we were first told about MLD schools, I searched for a school to meet his needs, first via our county's website, then out of county (as far as I was happy to 'let' him go). The big thing for us is the 24 hour curriculum. When L is home, he follows me around everywhere - literally - I even snapped at him the other week "do you want to come in the bathroom while I have a bath L?" He went and sat in his bedroom with his door open so he could see when I'd finished in the bathroom. If I was to go out without him, he sits in the window, watching and waiting until I get back. He has no idea about play or occupying his own time. He has no idea how to run himself a bath, or a sink of water to have a wash. He has not got the ability to even make himself his breakfast in the morning. It was mother's day on Sunday, yet because I was the one getting the cards and presents, he became very 'needy' in increasing stages. I have 3 other children and a husband who all need me as well. I can't be with him constantly. We have had a couple of SS referrals because he and we can't cope with him at home for extended periods. My 2 middle children become more withdrawn and distressed as the week draws on and they know L is due home. Monday at 8.30 is a sigh of relief from them. But how do I put all that and more in a way that says he needs the 24 hour curriculum? Whether that be via a boarding placement or out of school support? Dove house. I have looked at their prospectus and we are very keen to have a look around. Unfortunately, the head is busy this side of easter, so we can't go and look around. We will, however, be going as soon as the new term starts. But even though on the surface this school looks good, it is a high school. And doesn't have a residential provision. My husband and I have both said that we are prepared to now fight for the right placement for him. But what is that? Even the private school we originally looked at and had them agree they could meet his needs now longer looks suitable. I feel like I am putting obstacles in the way, and yes, at the moment, it does feel very much like 'better the devil you know'. But every time I have contact with school that feeling is getting further and further away. Private schools are our next option, but I am holding out no hope. Not because I don't believe there is a placement out there for him, but because I don't think our LEA will agree to fund it. And I am not sure that I can provide a good enough stance for any tribunal to take it seriously. Incidently, does anyone know if being in residential placement for the last 2 years - despite it not being on statement - do anything to help or hinder a tribunal?

yes it is simon, only with 'social' thrown in - the reason he got lumbered with this school in the first place (oh, and you're not being ignorant!). I also wanted to say that the stuff I wrote in OP. I KNOW that anyway, but I sort of 'forget' in general day-to-day-ness. So whenever I go to a meeting about L and it all gets thrown at me again, it gets harder to deal with. Especially because for the best part of 3 years, the school were of the opinion that he was 'fine' and a 'model pupil', and was 'getting on well', and 'improving'. IYKWIM

Isme, he is in a besd special school at the minute. He has a statement. We are trying to look at secondary schools for Sept. 2010 but everyone we think of gets knocked off the list for some reason or another.

Well, same old - same old with me, if you look back at my previous posts over the last couple of years, you will see a pattern that I am not happy with L's school, but despite my best efforts, I have not been able to change his school - and in fact, don't know how to even go about doing that. I had cause to write a complaint letter into school (which I copied in to the Governors - who STILL haven't got back to me! - Social Services, and the head of children's services for my area). Fair do's to the headteacher, the same day he recieved the letter, he phoned me and said that he would reply, but needed a couple of days to look at the issues and write back to me. I requested a meeting to just go over a couple of the points raised in both mine and his letters. During this meeting, it was rammed home again just how different L is. He is a 'complex child', he has 'moderate learning difficulties', 'he is very unco-ordinated', 'he doesn't play with children', 'he doesn't belong in a besd school', 'he is very immature', 'he behaves really well in school', 'what he lacks in ability, he makes up for in effort', 'we'll support you in getting a mld placement'. I am sick and tired of everyone telling me how different he is, and what he can't do. Why can't they tell me how I can help him? He is 10. He will be 11 in September. There was an 'incident' last week whereby a girl called him behind a tree, asked him to kiss her - so he did - and she then said 'now I'm your girlfriend'. He then shouted 'what's a condom' on the bus home from an activity, and upon questioning he thought it was a type of kiss. Bless!, you might think - I certainly did - until I started thinking, well, what else would he do if he was asked/told to? Evidently school have thought the same, because L is under constant supervision. GAH!!! So then I was also told that L 'is very niave' Right, so now I have to find a high school that is not a besd school, that is an MLD school, that deals with ASD kids, that understand he is niave and can look out for him, that can help work on his co-ordination, and that hopefully have a boarding provision that he can have 24 hour support, cos without this, how the hell is he supposed to learn to live in a 'NT' society?

Thanks Ian, I suspected as much. Have just PM'd you.

Trying to search for 'Ed Psych', or 'Eye tracking' or eye test or AS or ASD or NT or NAS would be so much easier and bring up a more detailed search than say - psych, or tracking, test or (how many people actually write asperger syndrom, or autistic spectrum disorder, or neuro-typical, or national autistic society, or the full word of the many, many abbrieviations that are used on this forum. I understand that if the most common words 'The', 'And', 'it', 'or' etc are seached for it would bring up every single post, but just putting a " " around the phrase you are searching for would solve that (in theory).

L is hyperactive!!!!!! During a phonecall, it came out that L was "extremely hyperactive - not naughty, just hyperactive, and that he mentioned that he hadn't had his medication that morning". After 2 1/2 years of saying "there is no difference in him when he has his medication and when he doesn't". HAH!!! Oh, and he hasn't got a gold certificate this week because of his work output. "As the other children are all given merits based on their work and not their behaviour we thought that L should be too. As he hadn't completed enough work, he has lost merits so will not be getting his gold certificate" (I am actually quite pleased about this as it seemed like everyone at his school felt that he needed to be 'bolstered' all the time, and gave him merits for being good, merits for doing a sum or too, merits for having his teeth taken out, merits for having a bad weekend at home - yes seriously! and none seemed to be for his actual school-work - even though this is the area that he is having major problems in in school. The school even had to introduce a 'platinum award' as he got so many gold certificates)

Anyone ever heard of this? Brought to my attention that L struggles copying from board/book to his e.g. handwriting book. He has been observed looking at board, looking down at his page, starting to write the word, have to look up and read word on board again, then back down to finish word, then he has to look at the board to read not only the first word again, but the next word too. the person said that each time he looks from either his book or the board, he then has to read the whole thing again in order to find the place he was at. This person made the similarity between L and her daughter who has been prescribed yellow lens glasses to help with eye-tracking. She also suggested taking L to the optician to seek their opinion. I have heard on here about different coloured lenses to help with various things, but admit to being a bit clueless to knowing whether this was to help with the sort of problem L is apparently having, or whether it is something totally different (e.g. his short-term memory problems/possible dyslexia etc). I hate it when people throw things at me and expect me to be able to give them answers/tell them what I'm going to do to sort things out.