KezT

It's probably worth going to the docs to get checked out-if you are anaemic it's easy to sort out -just take some tablets for the days you are menstruating! There are also other contraceptive options which might help lighten the blood flow. DEfinitely wort chatting to the doc about anyway:)

Well, I sent off for my Cerebra voucher, so hopefully willget some SALT through that. There is someone who sounds spot on not far from where I work, so will try to get time with her! I spoke to my Ed Pysch sister and she admitted that SALT on the NHS for anyone over 5 years old who has an understandable vocabularly is virtully non-existant. Its not that there is a shortage of therapists, just that each council aea only ever employ one so they do not have time to take on anything other than non-verbals! Everything else has to go private I also sent off my appeal. Will wait and see on that one...... But thought I'd let you know that the "nice" SEN lady came to visit us again to explain the Note in Leiu. She said that as they have now done al the reports and written down all the information and suggested support for DS, "that is just as good as a Statement" really I don't FINK so lady!!!!!

I would think the Head is in a dificult situaton too... If the LSA has handed in her notice (which could be for any number of personal or confidential reasons) and has to leave this Friday, there is little the Head can do about it. They can stop the pay for not giving notice, but you can't physically frogmarch someone into work and make them work there! Equally, a new CRB takes several weeks (at best) to come through. It might be that the interim LSA has a CRG rom a previous emloyer which you could ask to see and might be willing to accept and sign the waiver. Without a new CRB or your signature they will not be allowed to be alone with your child at any time, which will breach your son's support needs and so put the Head in an impossible position. The only alternative I can se is that your son stays at home until the CRB comes through....

just google "bus" and go to images......

but fragile x is picked up by a blood tst, brain damage is usually picked up at the time of the damage. Surely it would be useful to be able to dx "genetic" Autism as early as poissible too? The argument that is running here appears to be against the concept of having a definitive dx process which just sounds insane to me! Surely a definite dx is always better than a "possible" dx. If I had ANY doubt about my son's DX I would still be screaming at any and all professionals to exclude anything else that might be - which can be a long and traumatic experiance! A definitive dx would be far preferable than "he shows the signs of ASD but we don't know why, so lets call it ASD and you'll just have to put up with it"

My son has pretty much no imaginative play ability. He certainly wouldn't play with a card board box About 6 months ago he finally started playing with toy cars/aeroplanes etc making them drive/fly round his room for several minutes. That was the first example I have ever seen of him imagining something is other than it actualy is - he is 10 years old. He won't dress up, won't join in with his sisters when they play "mummy and daddy" and although he reads fiction, he can't tell me the plot, so I'm guesing he just reads the words! he can not follow film plots either.... but he is not the most routine obsessed ASD either. I can change plans and do things diferently with just a little explanation (unless he's already stressed out anyway), and he only shows a few `OCD signs.....

but obviously not always as my little one did not have an IV or even an injection, and was fed just minutes before going in. Although I did have to fill out a ridiculously long form to be allowed to sit in the MRI room with him I think that definitive dx at a very young age would lead to MORE specialised and individualised services, not fewer, as all professionals involved would be sure they were dealing with the real thing and we would not have to jump all the parenting/MH/paranoia/physical issues hoops first! Plus, the support would start so much earlier so in theory, children would need less anyway.

TBH, if they ever find even the perfect dx prcedure, that 100% acurate totally non-ivasive and has zero side effects of any kind -they still are very unlikely to use it restrospectively. it would be used for new dx or were there is a question over the dx.

I would assume that the idea is that as soon as a child is identified as having posible ASD signs, they get an MRI, which would work out FAR cheaper, quicker and easier than multiple assessments and professional meetings An MRI is a very safe test and there are no known complications or side-effects from the magnetic field used during the scan. there are some issues if you have metal implants in your body, but again, not many young children will have. there have ben a couple of incidences of an alergic reaction to the contrast medium, but nothing severe. the most common probem is claustraphobia and inability to stay still! hardly a dangerous procedure to dx a child! it is`earl days yet, but a recognised medical dx would mean that people would not have to feel the need to "validate" theirdx! As to other conditions where people feel that - everything that doesn't have a valid mideical test LOL: ME/CFS is the most obvious, or back pain, gulf war syndrome...... in all honesty, I find it hard to understand why ANYONE would not want a simple, definite dx process to be available?

you can apply online or go to the CAB and they'l do it for you or go in to the job centre and say "I can't use phones" - if they ask why, just say it is due to your disability. it's none of their business to know more as for the OP and inability to use phones is a perfectly foreseable disability (regardless of why) and therefore any service provider must make reasonable adjustments to provide their service in an equal way to people with such a disaility - feel free to quote the DDA in you emailif they are being slow to respond...

But the baby MRI scan was really clever The appointment was made at a time I thought he would be tired, when I got there I had a nice quiet, dark room where I could feed him and get him off to sleep. Once asleep we put him on a bean-bag type thing, and they sucked all the air out of it so it held him snugly. They also put some really cool headphones on him so they could play music (which we had been given a month earlier to get him used to it) during the scan, so the noise didn't startle him That way he was wheeled into the MRI, and stayed perfectly still for 45mins Of course, he doesn't have the sensory isues that my older DS had - he wouldn't be swaddled, wrapped in a blanket, held tightly or even go in a pram/moses basket, so I don't know if the bean-bag "swaddling" would have woken him up? But TBH, if a 4 mth old baby is sound asleep, then they will sleep trough quite a lot, so he probably would've been OK. It's trying to get toddlers and older children to stay still which is the problem, if you can Dx as a tiny baby, it's much better all round

I am hopeful that there will be a "proper" dx procedure one day in the not too far distant future. I'm not terribly knowlegable about such things, but my PhD in neuroscience & Ed Pysch sister swears that there is a physical difference in autistic v NT brains, so it *ought* to be dx-able..... My littlest one had an MRI as part of the BASIS study when he was just 4mths, and is still part of the study, so hopefully if he does need a dx, he will get it earlier than my older one, who was 7 - despie being quite severe (although not speach delayed). I also think that a "medical" dx would not only stop the fashionable or just incorrect dx's, but would give more validity to the dx of ASD in general - I know far too many people who don't believe in HFA with the ridicuous reasoning thatwe're all a little bit on the ASD spectrum

From America, so it's probably best to ignore the somments MRI DX study

thanks Sally - that sounds AMAZING <'>

I know he is only 5, but it might be worth trying to ask him Obviously phrase it simply, but ask what made him good today,and if he remains calm, you can also try asking what made him so cross when X incident happened. Might also be worth dad taking him aside on Saturday & talking through the new working hours, and ask if he has any worries/questions etc....

I suppose I ought to point out that if you feel you can not cope, you should contact your local social services. In theory they can provide support both practical and emotional, as well as commission reports etc. They may even pay for some of what is needed It never worked for me - when I called them in tears they couldn't even be bothered to follow it up, and when I chased they just shrugged their shoulders but in theory they are there for you - and TBH, it does depend on where you are and who you talk to......

Although the problem is the behaviour, what you need to do is try to work out what is triggering the behaviour so that you can find ways to stop it before it get's to that horrendous "I can't cope" point.... In most children, and certainly in ASD children, the bad behaviour is often a result of anxiety and/or stress - it was explained to me thus: Imagine you are starting a new job, in a role you've never done, and a place you've never worked before. Think how you feel on tht day, how stressed, anxious and jittery - then remember that is the base level an ASD child is probably living at It seems like it only takes a tiny little thing to send them over the edge, because they ARE so near the edge al the time. The question you need to ask as the parent, is what kind of things make that edge come closer? It may well be sensory stuff (light/colour/noise/touch), or situations (crowds/being asked questions/having to make decions or choices), or perceptions of his responsibilities/expectations (how he should react/act/behave) or any combination or something completely different..... I know that's not a lot of help, but every child is different. Many ASD people dislike supermarkets - they are very noisy, bright, smelly and crowded places where you are expected to follow all sorts of rules and make all sorts of choices! I can't say I've found all the answers (I wish) but life at home has certainly calmed down since we discovered that our son is hypersensitive to base sounds and to touch - a light brush past feels to him like he is being sqeezed tightly, so anywhere crowded is absolutely out! Plus you can use all the normal parentig techniques of rewarding the good behaviour and punishing the bad - just make sure your rewards and punishments actually mean something to your child! Mine thinks that being kept in for playtime is a reward Read as much as yu can manage about ASDs - even if it doesn't sem to apply at the moment, or if you don't understand much, it may make more sense as time goes on. If you do get a dx, I would highly recomend the Early Bird Plus course too.

hmmmm, LEA did an up to date EP assessment, and also the paed (who he has never sen before) was asked for a report (she just wrote what we told her LOL) as was his Pysch at CAMHS. I never saw the original SALT report, and AFAIK they have not ever seen him since the original DX. As I said, they said they only deal with speach delay - language/communicatio issues don't seem to get a look in. I always assumed it was just massively understaffed so if your child can manage to make themselves understod, they don't have time to do anything further with them:rolleyes: Perhaps I should chase this up tho The school have really gone above and beyond - they have implemented every strategy they, we or the NAS could think of! The problem with DS is that he doesn;t seem to respond to much, and not anything for any length of time What he needs is one:one adult support all the time. School has tried their best to provide this using learning mentors/LSA's although sometimes he has to share them with other students. In all honesty I'm concerned about what will happen when he changes schools in September - how much of that support will follow him without a Statement? The 10% figure was a bit of a shock TBH - I know he won't particiapte in some subjects, but I would have guessed at a good 50% particiaption at least As I said, I am quit confident we will win an appeal - I just don't realy want to go through the wole Trbunal process (again)! But the lEA are leaving me no choice Completed the form today - just got to compile all the reports and I'l send it of later this week.....

Total SALT input was approx 1 hour assessment in 2007, for DX. The report submitted stated that he has hghly developed language skills and can use language to describe,predict, infer and pretend. It also states that he has limited imaginative play skils. At that time SALT did not consider he needed any more work with them. Wheh I rquested further SALT input a couple of years ago, I was again told that they only deal with speach development delay and would not be able to help DS The same SALT report is put into each funding request - he has not been reassessed at any time.

TBH, I know plenty of NT people with exactly the same problem. Some people are just not very good at selling themselves - espcially when it's a job they don't really want My advice would be to take a botom end job in a big firm and get noticed for the good work you're doing. Internal prmotion is the ideal route for you.... My brother (not dx'd - definitely ASD tho) finally got an IT job with the perfect company 10 years ago and by just sitting there doing it well has managed to get promoted twice - once without even realising it

well, I have decided to appeal. The Statement was refused on the basis that the school can support his needs from within their wn budget, yet the school reports that he is only completing aproximately 10% of his work each week! All the reports agree that the school is doing everything it possibly can, so IMO it obviously CANT adequately support his needs from within its own budget. Perhaps I'm niave to think that adequate support would entail DS completing the majority of his school work, if not 100%..... Plus, we've just got our initial assessment through from social services, where the head teacher admitted that there have been 15 separate occasions where DS would have been excluded - he wasn't because the school are inclusive and know that DS would not see it as a pnishment (there have been three further incidents where DS HAS been excluded). The head points out that such an inclusive policy would not be possible at secondary school - however inclusive it is. Feeling a bit depressed reading all the reports tho- and I assume will have loads more to come for the appeal

The curent ESA criteria is very tough and totally skewed towards physical disabilities (the whole point ofbringing it in was to to disallow many of the mental health IB claimants!). However, the criteria have been heavily criticised and are being looked at atm.... Depending on your difficulties, it is possible for someone with an ASD to attain enough points to qualify for ESA (work related activity). Although, IMO, without a DX you re extremely unlikely to do so without a LOT of evidence of said difficulties. details of the criteria here Appeals have a very high success rate. But again, I am not sure I have ever heard of a "self diagnosed" anything geting ESA.

Personally I disapprove of chuggers per se, and will NEVER give to them, or even speak to them on principle. I have had sone real verbal abuse from some for refusing!!!

Actualy, I said to the SW that I'd rather everyone reported everything and 99% turned out to be fine, than the 1% were missed - she thought it was vey community mindeed of me She was concerned that we would try to find out who had reported us and, one assumes, take "revenge" But, then again, DS is nearly as big as DH, and DH uses a stick/mobility scooter. In a fight, there's little doubt abou who would come out worse off. Also, pulling a screaming child out of a car hardly counts as abuse in my book. Which is why I wasn't too worried when they said they wantedto come see us Plus, the only person I can imagine would report us (as we get on well with several neighbours, and several others would be both unwilling and unable to contact the authorities about pretty much anything....)is the bloke accross the road, who spends his days loitering in the street with the baby screaming in the house and tends to hang out his toddler son's window of an evening, holding the baby and chain smoking......

DS ran off and locked himself in the toilet at school again today, after an altercation in the playground. It sounds like a fairly normal altercation, both boys were in the wrong *sigh* bt DS ran off,locked imself away and started headbanging four teachers were involved in trying to talk him out again, and the whole afternoon was wasted (why the locks are not unlockable from the outside is something I intend to bring up with both the school and LEA!) When he does something like this, school always ask me what interventions they should put in place to stop it happening again. I have given several ideas previously, but obviously they have not worked I DON'T HAVE ANY MORE SOLUTIONS! He doesn't do this at home - well, he does run off, and slam into his room/the bathroom/out the shop, but he always comes to me when I ask him to. He may come and start shouting/kicking off, but he does come! I don't know why he won't come out for the teachers!! Don't schools have professionals who can advise them about issues in the educational setting? Why/how is it my fault that I don't know how to manage the school situations? Feeling really down about the whole thing atm