Tez

<'> <'> When things are difficult it's easy to blame ourselves. Mr L wasn't saying that you were over-protective or a worry wart he was just reporting back Keegan's feelings. I think sometimes we are oversensitive and think professionals are frowning upon us when they aren't. As for letting go, it's difficult, but could Keegan's friends look out for him crossing the road, and for any other dangers? I know A's friends look out for him when they are out together and have done since they were about Keegan's age.

PSH Whilst you're waiting for SENDIST you could also try mediation, it's a lot quick than the tribunal and might help you get something moving quicker than the 6 months we're having to wait for our tribunal hearing. You can still progress with SENDIST and you don't have to agree to anything you don't want to.

<'> <'> <'> <'> Get advice from IPSEA, but be particularly careful how you deal with the home schooling. Would be best if you could get Luke signed off sick and keep him on a school register somewhere, but do speak to IPSEA about how best to go about this as well. I think I read somewhere that if you deregister the child they don't have to hear the appeal, but am probably wrong.

Karen, Prosopagnosia is an inability to recognise faces. It was once thought to be extremely rare, but increasingly people with HFA are speakingout and talking about their difficulties with facial recgnition.

Maybe this was a perfectly innocent comment since the written word cannot accurate reflect tone of voice, but it seems way out of line and almost taunting. When will schools learn that when they play games like this with parents the ones that really suffer are the innocent children. Your daughter's ASD means that she needs to be prepared for changes and keeping her in the dark as to which class she's going to be in is bound to increase her anxieties. Thinking of you and your daughter today.

I write to the school thanking the for the minutes but expressing my concern that points a,b and c that were discussed have not been recorded and that I would request that my response to the minutes be formerly recorded and retained and that the minutes be officialy updated to contain the ommissions. And yes I would expect to be copied on letters to the LEA about provision in my child's statement, after all we are supposed to be working in partnership.

Low incidence is something that isn't common. ASD's are considered high incidence because there are usually a number in any one school. Sometimes it helps to stress the comorbids rather than the ASD to get help since prosopagnosia or sensory integration dysfunction if dx'd separately are considered low incidence.

Lauren What would be the benefit to your boys and how would they react to being observed by these professionals? I can see why the professionals need the training, but what do you and your boys get out of it since they are already dx'd. I know that you say they are treated like royalty, but is it something they could cope with or would they be uncomfortable?

Glad things that people are now lsitening to you, and that you seem to have some kind of dx.

I'm not surprised you're a bit stressed. Hope reconcilation comes soon. I think sometimes these authorities forget that there are children who are suffering because of their actions. Keeping my fingers crossed for you.

I'm glad that as parents we are learning to challenge things in writing that the school have obviously got wrong. Sorry though that you are in this position. Whatever makes them think that they can get away with it when they must know there are professional reports showing his lack of progress. Fingers crossed you get the draft statement tomorrow by the way.

Isn't it always the way, the odd thing that you forget to officially confirm in writing is the thing that they chose to use against you. Like you though I usually find if I search my files hard enough I have the evidence to prove my point. Good Luck with the panel's decision. I'll keep my fingers crossed it goes your way. When will you know their decision?

The advice I was given by the Paedatrician was to make sure that you give the melatonin about 1 hour before you want them to sleep. You must then create a situation which allows them to wind down without undue stimulation and in which they are trying to prepare for sleep. Since melatonin is stimulated in the brain by falling light levels, experimentation has shown that melatonin given orally needs the same conditions to be effective, so no television, no computers aor hand held gameboys etc. and the room lighting should be dimmed as well. The child has to want to go to sleep otherwise the melatonin will not work. If this is still not sufficient to help the child sleep, it may be necessary for the Paediatrician to adjust the dose. Hope this is of some help.

<'> <'> Hope things sort themselves out and J gets his statement. Does J have any support in school at the moment? He obviously needs some close supervision and support and schools are supposed to supply that as necessary out of their own budget until extra funding from the LEA can be agreed.

Had a phone call from our local councillor who has been trying to mediate between me and the LEA over non-quantification of the statement. He'd had a word with A's school and apparently I'm a problem because I want the i's dotted and the t's crossed and I have to record everything in writing and that is unacceptable because they haven't got the resources to be tied down that closely. Furthermore, it's unnecessary to confirm in writing something that's been verbally agreed. Well, too bl**dy right I do because I've learnt the hard way that if it's not in writing it never happened or A was said to misinterpret things. I've learnt that you have to challenge in writing minutes of meetings that are ambiguous, have vital information missing or are just plain wrong because other wise they come back to haunt you. I'm sorry that my officially recording everything causes them problems...but it did make the school start to take my concerns seriously after years of fobbing me off and it has got A a statement that everyone said he wouldn't get because my records showed his needs were not being met despite the school's saying everything was hunky dory. My recording everything shows the errors in the school's and LEA's case statement for tribunal and of course they don't want the i's dotted and the t's crossed because I might then have a statement that was enforceable in law. I am just so angry, just where do they get off putting the blame on the parents all the time and making us question ourselves? When are they going to start complying with the law instead of forcing parents to fight for their rights? Sorry rant over. Just needed to get that off my chest. I think I have been overly reasonable with both the school and the LEA but the gloves are now off. The school are just about to get another email asking why work submitted in December has still not been marked despite 3 chasing emails.

Glad you're getting somewhere at last. Fingers crossed the melatonin helps.

<'> <'> Stick with it you're doing a great job.

Seems to be the only possible decision is to keep him off school. Hope you enjoy the film.

My husband and I care for 2 sons both receiving highest level of DLA plus his elderly Aunt with terminal cancer and receiving highest level of attendance allowance without help. The OT from SS asked who else helped out when she came to assess for a disabled facilities grant and there was a stunned silence when we informed her nobody. The same from the PCT nurses who occasionally turn up to assess Husband's Aunt. Husband hasn't any relatives, my family all live too far away to help, and as for friends, they all went missing when life became difficult. As Oracle says A is now educated in the home so it is a full time 24 hour a day job. There are days when I'm too exhausted to think and days or nights out for husband and me on our own are definitely something that is too far in the past to remember.

LKS I hope your daughter is in a class with her friends next year. It's a shame we can't be a fly on the wall when these teachers and LEA officials open the letters we send. It would be nice to see their reaction. Glad you got some pleasure out of sending it.

Just to add to Jen's post. The EP who assesed A for his statement refused to carry out any psychometric testing, saying that they would not accurately reflect A's abilities. We were told when A was dx'd that from the tests that the psychologists carried out they placed A in the genius level with an IQ of around 158 and he has also sat Mensa tests which placed his IQ around the same level. This was noted in his dx report. The EP accepted this, he did however set A various tasks which he'd discussed with me previously to ensure that he would enjoy doing them and that they wouldn't make him anxious. He then sat speaking to us whilst at the same time observing A and he assured me that he could tell far more in this manner. The EP who did the application for exam dispensations halted the testing because she said A was too anxious and noted that she had not tested to limit but noted that from observation she knew that A was excellent in a, b, and c. The SENCO who did everything possible to thwart my attempts to get A the help he needed, pushed him through every test she could think of in her office whilst he was signed off school sick. The results were completely topsy turvey and showed him as a slightly above average child. His weakest areas were shown as his strongest because these were the tests she performed first when he was least tired. I really regret agreeing to take A into school for these tests because they achieved nothing and have caused problems, but the SENCO told me that without the tests the LEA would not agree to statutory assessment, something which I now know from the EP was not true. Unfortunately, LEA's will use whatever information best suits their purpose and despite the hospital reports, despite both EPs and the Deputy Head writing to the LEA asking them to disregard the SENCO's test results and despite A being on the gifted register for Maths and Science, the results they keep quoting at me are the SENCO's results. I have been assured by the EP that increasingly with ASD children they are relying more on observation and setting tasks that the children enjoy doing than formal testing. The results are considered more accurate and in our LEA are all that are necessary for statutory assessment. I hope someone else can learn from my mistake.

A could never copy correctly from a board or a book. So in the same way that you are saying if the letters were written one at a time, he could copy it, but a small chunk of text or a list of spellings he invariably got wrong. I was told that this is common with dyspraxia and/or dyslexia together with being able to spell verbally but not transfer that knowledge to paper. I'm not suggesting that this is the problem, just saying maybe it's one thing to consider. Personally, I would have a word with the teacher and ask her views, 7 is still quite young and maybe he's ok in class particularly if you've always thought his spelling age appropriate.

A had this problem. For him it was all connected to his dyspraxia, but it could be any number of other difficulties. Does Tyler have difficulty copying from a book or white board as well? If it's any consolation, A is much older now, and although he still has problems he is much better.

Dinner batman can be accessed HERE or the pdf version HERE

Good Luck. Everything crossed.