Gita

Pardon my ignorance, but what does 0.6fte mean?

Thanks Nellie. I'll look those up as soon as I can. It's great to see how big the forum is now. Keep up the good work. Gita

It?s been a while since I?ve been on this forum and would like some advice. My son?s Statement is due for annual review in a months time (originally given in Feb 2005). Currently his statement reads as follows: ?Part 3-To be provided by Other Agencies Direct & weekly sessions of Speech and Language therapy intervention for a minimum of 45 minutes that will focus on xxxxx?s areas of weakness. The programme needs to be administered and delivered by a speech and language therapist.? I had to fight very hard to get the above provision and in the end the only way I was able to do this was to commission an independent assessment by a private SALT firm who recommended the above in their report/advice. At the time it cost me ?250. The LEA took some persuading to look at the report and finally agreed to put this in the statement. The weekly sessions with the SALT from the Primary Care Trust have been going on now since May last year. My son is now on his 3rd therapist, the previous two having left on maternity/change of case load. His most recent therapist has only seen him since just before Christmas. This therapist has now advised me that in her clinical judgement my son does not need as much provision as he has progressed greatly over the last few months and said she will recommend that in each term he have a six week block (delivered by her), followed by a further 6 week block to be delivered by his LSA. She would draw up a programme & train the LSA to deliver this. She said if the LSA felt this was not working, they could go back to the ?old arrangement?. She says his receptive and expressive communication skills have come along greatly. She did not take my point when I said that his comprehension is low and although he is very expressive, half the time what he says is not relevant to the conversation. He cannot conduct a conversation unless it?s on a narrow range and usually it?s ?yes/no? answers. She did not take my point when I said that as nice as the LSA is, she is not a qualified SALT. It?s rather like wanting to see a dentist and being passed to their assistant. Also how would the LSA determine whether the arrangement was working or not? No matter what I said, I could not persuade her otherwise and finally we left it that she recommends what she felt best and I would have to fight it. I know that in our area the SALTs are heavily discouraged by their managers to recommend weekly sessions even if they feel a child may need this because of budgetary constraints within the Primary Care Trust and also because there is a real shortage of SALTs within the area. So I feel that in this case I cannot trust her ?clinical judgement? and her arm is being bent by her managers. I have now made an appointment with the same independent SALT firm as before for a private assessment, (at a further cost of at least ?250) so that I can at least be sure exactly where my son?s weaknesses are. My questions are a follows: Does the LEA have a right not to look at the report from the private SALT? If the LEA decide not to look at the report, do I have a right to appeal? My sons? greatest deficit is social communication. Does this fall under the aegis of ?Speech & Language Therapy?? I have looked on the Primary Care?s website, but cannot find anywhere on there what falls under Speech & Language Therapy. ie use of social language, expressive/receptive language, comprehension of language. Sorry it?s such a long post.

Hi Helen Just read this thread and am really sorry to hear your news. I hope that you're feeling less angry and frustrated now. I sometimes think that the best way some of these LEA people can learn about the difficulties parents have would be to force them to come into our homes for a week or two so they can really see it for themsleves. And they should be made to do this every year so they don't forget.

I had a letter from my GP earlier this week to take my son for his booster shots. He's now nearly 4 & half. These are for DIP, TET, PERT, Polio & 2nd MMR, so to me it sounds like he's going to be given all of these in one shot. I remember something in the media a few weeks ago about the 5 in 1 jab, but lo and behold, they've counted the MMR as one, rather than the 3 in 1 it really is. I can't understand what the government think they're doing. Surely if people are suspicious of a 3 in 1 jab, aren't they going to even more suspicious of a 7 in 1 jab??? Although I believe that immunisation is a good thing, I would never forgive myself if this jab had a detrimental affect on my son. I would like to know what others think about this.

Whatever you do, don't let him watch The Great Escape Also keep a watchout for any tunnels! Seriously, I'm really glad it turned out well, but poor you. You must have been on total panic mode. Take care Gita

Hi my sons obessessions are as follows asking what colour you get when you mix different colours watching CBBees watching Shrek & Finding Nemo any water play/blowing bubbles hand held fans/twirly lights play doh crisps/sweets playing with his teddy playing/watching/touching/talking about anything that spins watching fireworks drawing rainbows/fireworks These are just a few that I can think off the top of my head Gita

Helen Well done, you deserve it. A well deserved glass of wine and a hob nob are in order, I think. Gita

Hi Helen Thanks for your advise. The reason why I haven't recd all the accompanying bits & bobs is that the proposed statement was emailed to me. I recd the email @ aroung 7 pm yesterday and the LEA have told me the reports etc with the original proposed statement will have been put in the post to me, so hopefully I'll receive it all by tomorrow. Gita

PS I see that you're approaching the magic 1000. It would be great if this could be achieved by the site's birthday. <'> <'>

Thanks a lot for that Nellie

Hi all Just thought I'd let you guys know I've just received the proposed statement for Shaan by email, all 11 pages of it! It's now a matter of sifting thru it & making sure that it includes verything that we think it should. The LEA have provided 26.68 hours of support. I've had a very quick glance thru it, & it doesn't appear they've quantified anything apart from the number of hours. I know that I have 15 days within which to write to them if I don't agree with it. Does anybody know if there is a standard letter? If there is one, can you PM me. Thanks for all the help and advise so far.

As long as you're serving up some Asti, count me in. Or even better, Baileys on ice.

Brilliant news.

Hi Einstein Welcome to the site. I know jus what you mean. I felt the same way when I discovered this forum & I've found lots of help & advise here. Hope you find the same. Gita

Hi Cristy Welcome to the forum. I hope you find it useful, I know I do. I've often thought about the GF/CF diet, but like you say, I'm too lazy to try it out. Shaan, my 4 yr old is such a finicky eater & so skinny. At the moment, all he likes are dairy products & bread/rice/pasta. He rarely eats vegetables or fruit and I think if I cut the things he will eat, what's left? Also I rarely cook and when I've tried to cook healthy dishes in the past, having spent ages doing so, Shaan has refused them, which is discouraging. There's nothing worse then lovingly preparing something, only for your child to refuse it! Kris, Elefan & Nellie If this isn't already there, can I please ask that we have a special thread for GF/CF recipes, so people like me have one point of reference. I would like to see easy recipes on this so people like me can be encouraged to try this out. Gita

Helen Maybe you could use these in the garden to keep the flies away. Or better still, send them to me & I could use them in my garden to keep my NFH (neighbours from hell) away. Gita

BRW Rest assured that I have no designs on Jester. I'm only here for the super repleneshing Char. Name too secret to be mentioned (In other wrods, still can't think of one)

Jackie & Josh You mission, should you wish to accept it, is to find the secret recipe of the dun dun duh...............The missing hob nob. The one with the secret microfilm of Ban Man & Delete Woman planning their next nefarious move to out wit all us super heroes. This tape will self destruct in 5 secs............ppppppffffffffffff........ Here's hoping you'll do the right thing. Signing off now. Name too secret to be mentioned

Hi guys I've just noticed there's 2 programmes on tomorrow on BBC1 at 1.45am and 2.45am called 'In search of genius'. This is the middle of THIS NIGHT. These were on a few weeks ago, but I only caught part 1. It was very interesting and one of the points it made was about 'mapping' to help remember information and to aide learning. I remember thinking at the time that this is a visual thing and since ASD people a usually visual learners, this way of learning would be useful. Am going to programme my video, if I can figure out how. Usually hubby does it, but he's now gone off to sleep. Goodnight Gita

Hi Linny I think CarolJ is right. You have to rise above it and ignore them. Next time they do their pariah act, imagine them sitting on the loo or naked. That'll bring a smile to your face and they'll be left wondering what you're smiling at. Hang in there Love Gita

Hi Mary Welcome to the site. I only discovered it a couple of weeks ago & have already found such a warm welcome from everyone. I'm also quite ancient (45), but they say the oldies are the goodies! Gita

Hi Helen Sorry, I didn't see your post earlier, so hope you get to read this. I don't have a clue how to send a mesage to you personally. You asked what kind of pro made Shaan's DX. Shaan has been seeing a paediatrician since he was 9 months old. He never crawled, but used to roll around the floor. He became quite adept at this. We were worried that he never crawled & he would never put his weight on his feet even when we held him up. Eventually (around 18 months) he did start to walk & our concerns then moved on from his physical wellbeing to his mental welbeing as his speech was limited. As it happened, one day we met one of Tariq's cousins quite by chance. He had been abroad for 5/6 years & is now back in the UK. He mentioned that his son was autistic. He said that his son would arm flap, repeat things, spin objects, spin himself etc. As he was describing his sons behaviour, bells started ringing in my head as Shaan was doing the same things. Again, quite by chance, we had an appt with the paediatrician the following week & I asked if Shaan might be autistic. She immediately confirmed that this was a distinct possibility & the following month (June 2003) confirmed the DX. She was quite surprised by our attitude in that we took it quite well. I think she's more used to people denying that there's anything wrong with their children, but the way I look at it, it's better to know what the problem is so you can deal with it. The nursery Shaan goes to is a state nursery & I think it's just luck that he's attending there. I didn't like the other nurseries in my area so only applied to this one & got a placement. This was prior to Shaan's DX. They are not a speacilist or independant nursery, but they have had ASD children there before, so I guess they are pretty experienced in this field. I also believe that nurseries have far more funds given to them so can afford to give 1:1 to children if needed. Unfortunately, this nursery does not feed onto a infants/primary school, so in Sept 2004 or Jan 2005 Shaan will be going to a different school. Hopefully, by then Shaan will have got a statement. Gita

vastsarah My son is nearly 4 years old & was diagnosed in June 2003. I was advised straight away to apply for DLA, but because the form was so long & I didn't know quite what to say on the form, it wasn't until January this year that I finally applied. I got a lot of help from a lady from Barnet Mencap (tel 020 8203 6688). Infact she even filled out the form for me. She knew exactly what to say, which is basically that you have to put down the littlest thing that your child may have problems with. If you dont live in Barnet, maybe there is a Mencap branch near you. Or you could try calling the above number & ask them what the nearest branch to you is. Hope this helps Gita

Thanks all you guys. I've never been made to feel so welcome. Its really good to know that you're all out there to offer help/support if I need it. Since we got Shaan's diagnosis, I've spent every spare moment reading books, visiting web sites etc, but have found it hard to actually talk to anyone about Shaan. I have friends who will listen and bless them, they do offer support, but I sometimes feel they don't truly understand as they have no dealings with anyone with ASD. Gita