Mother in Need

I too am pretty sure I was told this, but just can't lay my hands on the actual guidelines...or is it maybe that schools tell us this to keep us happy (as we then believe that our children are getting the help they need) but it is not based on anything and hence the reality is that we've been duped? Oh my, I am really becoming so distrusting of this whole system, I am not believing much anymore, unless I can see the actual law side of things/guidelines... which I'll need to quote in order to get my son the help he needs as 15 hours of help is not enough.

My son's draft was absolutely dreadful too, as a matter of fact IPSEA branded it an illegal document. They (and all those wonderful people on this forum) have adviced me to re-wrwite it, which I am doing but it's such a mammoth job. Having only seen one other statement, I would soooooo love to see one that actually works, so I have something to go for. Anyway, IPSEA says that when I have the meeting with the LEA on this, I should just make itr very clear that their own version is such an illegal one we could take them to court over it, BUT if they're willing to cooperate and take all my suggestions on board... This shouldn't have to be this way though, as Helen says, we shouldn't have to check the statements, let alone re-write them altogether... There are so many people out there who don't know all this, nor have the back up like I have with this forum, and all those children and their families are missing out, it is so sad

Does the school have to continue what it did at SA+ when the child receives a statement? And if so, is there any stuff I can quote, like the Code of Practice. I am trying to suss out (I am rewriting the bad draft statement I was sent) if I could ask for the 15 hours of dedicated support that the LEA is giving, ON TOP OF THE 16 hours that the school were given, so mkaing a total of 31 hours each I am sure i've come across it somewhere, but I simply can't find any references.

Great news HH, all your hard work has paid off! Bet yo've all been a lot happier overall as well!

I too can now see so clearly that my ex is AS, everything has clicked into place over the last few months, it is all there. He ofcourse hasn't got a clue, and doesn't care what his son has. I hoped that if he read up on AS for his son's sake, he might recognise himself... 9 months later he still doesn't care. Knowing this myself is helping though, I can now understand his behavioiur so much more and forgive him for some of the things he did or did not do. Also, when he sees the boys, I now interact differently with him, and basically treat him the way I do my AS son. This seems to be helping the situation a lot.

Interesting indeed Jen. Glad someone is organising a campaign for this. Parent's rights to choose a school? Irrespective of Funding? Ahem, in theory maybe, in practice it doesn't exist...

But schools only accept that particular dx if either they themselves or one of their 'own' people (ie EP from the same LEA) has diagnosed it; at least that's my experience... Ian, thinking about it that way, I am not sure, definitely language and phonic, but I have no clue how to check out all the other probs you mentioned. Julieann, you've confirmed what I suspected.

Taxi drivers usually are just that, someone from a local taxi firm who's got a contract with the local authority to ferry kids around. I suppose they don't get paid extra for extra duties like real care; as a matter of fact I know drivers in this area are complaining about how little they get paid; I myself have only been offered ?3 for a half hour drive to ferry my own son to school, which barely pays for the fuel let alone my time and other car costs... I think this is wrong, and our kids should be transported by people with training and knowledge in ASDs and other conditions our kids (may) have.

That's a really useful Act, the amount of times my letters have gone either completely unanswered or only a very small part that was answered, are way too many. I will start using this. Thanks Sue! Might it be an idea to have this Freedom of Information Act information pinned? PSA you must be so worried and frustrated, I hope you get your answer soon and that it'll be what you want!

I ditto many things that have been said, my son AS 12 is very immature, I would say about 5-9 years behind depending on his mood and the situation. And yet, he can discuss theories of the universe and God knows what, with a former Scientific Advisor to the Queen, AND stretch this guy, it's unbelievable. He seems mature with adults, but can't cope with his peers, and still plays baby games; his brother NT 9 often shakes his head also, and is in many ways miles ahead of him. When things don't go exactly the way he wants them to...........he is like a terrible-two-toddler for quite some time.

Oh yes this thread is of interest to people, someone will come along who can give you some good ideas etc. I am sorry to hear of all this stupidity, as you say they seem to be soooooooo ignorant and 'all-knowing' it drives one up the wall... There have been other threads about how ignorant and biased many people 'at the top' are, and this is all so wrong. We've had the EWO involved, and to be honest he is just another total not understanding type of person, but he did not actually pester us into anything, and let matters be; he is certainly not a person I would ever be afraid of anymore, as a matter of fact he is the one who managed to get me re-imbursed for driving my son to school every day (though at the same time obstructing the process of the LEA supplying a taxi and escort).

We had a letter this morning re the strike, but it mentioned that ONLY the canteen staff would be affected and foods on offer would be limited. It did not mention anyone else. I am now going to find out though, there is no way son can be in school without his LSA.

When I mentioned to the SENCO that he also has ODD she just laughed and said 'well, that describes 40% of the children in this school'.

The provisional statement only mentions 15 hours 1-2-1, BUT mentions additional funding for his re-integration. PP told me she had received notification from the LEA that they are giving him 30 hours 1-2-1. When I asked if I would get this notification as well, she mentioned that that was ONLY for her and the school... Because they are refusing to put on a taxi (though LEA has now agreed to refund me for my costs) I cannot normally bring him in earlier as I have to get a younger child to school as well. This morning was an exception for us. So I don't myself want him in earlier than 9.45 due to the demands on my own time.

My eldest NT missed the bus this morning, so I had to drive him in. I have to bring my AS son in at 9.45 every day, but as we were there by 9.05 this morning, I was hoping I could leave him at school earlier. However, I was told to wait with him for 40 minutes, as his TA was with another child, and this was not part of the arrangement. There appeared to be no-one else who could be with him. However, the LEA is funding the school (pre-statement and for re-integration) with 30 hours PER WEEK of LSA support FOR HIM PERSONALLY. So for the last 4 weeks they've received 120 hours of LSA, even though he was only in school for 60.5 of those hours. School is not doing too badly out of this, are they? What I would like to know, for future happenings etc, is, were they within their rights to refuse him this morning, considering someone should be with him full-time anyway? I can understand that school uses their LSAs as best as possible and if he isn't there they can give this help to other children, and I was willing to wait a little for them to rearrange schedules etc, but a full refusal was not what I expected... On top of that, the morning being out of routine didn't help him at all, but school blamed his bad behaviour/attitude fully towards this only, that I wasn't sticking to his routine (blaming me very clearly, even though this was an exception and my eldest son's bus was early instead of late and this was only the first time ever he had missed it in years). However, AS son came home yesterday and was in meltdown for over an hour and didn't want to go to school at all this morning even before we knew we had to go in earlier. But will school listen....ofcourse not.

No, NO and again: NO The support we've had is only lipservice, and cost me more time, energy and stress to obtain than what we got out of it. School has been obstructive in many ways. The only reason his re-integration seems to be working is because of the individual LSA who is extremely good. BUT she has been taken away from another child with AS to cover my son, and now that child is left to flounder with less support and untrained LSAs. I have lost my business due to all the non-action and non-help, my other children are now having to see a psychiatrist due to the stresses on them, social services has still not done anything at all despite a whole year of requests etc, respite does not exist, there is no suitable childcare at all (even the NAS couldn't find me anyone when I tried to do a one-day course with them), etc etc etc. If all those professionals only did what they were supposed to do, and without us having to fight for every little thing, our lives would be so much improved. Ditto for school following the Code of Practice and even for following normal courtesy (like keeping parents informed and answering letters). Empowered? Strongly discouraged is my experience. Listened to? No way. Parents are seen as troublemakers who don't know their own children, and my views have certainly not been welcome (not that that has stopped me ). "Let us as professionals do our job" is what has been thrown at me too many times.

Thanks Dotty, that's good advice and a great way of wording it. I think I will after all now!

It's now years after my separation, but I can now clearly see the asperger's in my ex. One of the reasons my son was diagnosed so late was that he took after his dad so much... and now I can understand why. However, dad himself is totally not interested in finding out about what ails his son (diagnosed 9 months ago), so any hopes of him accidentally stumbling across similarities of himself and him starting to realise he is AS also, seem pretty slim. tmf, I would magine that it depends on whether your df is aware of the fact or not, and how he then reacts to it. There are loads of wonderful people on this forum with AS who I think would be willing to try and work tgether on any issues that need looking at. But if he doesn't, than yes my experience is like justamom; I always felt I had another pubescent teenager in the house, but one I couldn't tell off nor tell what to do; the tantrums were a lot worse and there was nothing I could do to help him in any way.

Might there be something else stressful going on in his life (eg school) that he finds hard to deal with and so he tries to regain his equilibrium by doing what he likes best - history? Saying that, my NT 15 year old son is somewhat like that, and just simply needs a good shouting at to clear his mind - I did yesterday and my has he been helpful today, I should give him a verbal hiding more often... This wouldn't work at all on my AS ds of 12 though, also in puberty, that would send him in meltdown...

Thanks Julieann!

PP has just told me that the LEA has provided 30 hours for my son to re-integrate him back into school. Once re-integrated though, those hours will go down to 15 as per statement (at moment still only in draft form as I have requested a meeting). How generous of the school to now say they they provide him with 30 hours, as in reality it is not them but the LEA...and then, he still doesn't go to school for those hours... I'm still not sure about writing back to the Head, still don't think I could get anything out of it other than being seen as difficult and mistrusting once more, prefer to write only when I see no other option to get something done/looked at.

I voted for follow up appointment, but that appt was for my son, not for me (though I was there ofcourse) and it was appalling. The psychologist had some print-outs from the NAS website and simply read it to him; her reading wasn't very good, so he took the stuff out of her hands and asked me to read it, but I at least tried to talk about it and asked him how he felt etc. I basically took over the session. She attempted the same the next session, son got so fed up with it he left the room and the building altogether and refused to see her again... This turned out to be one of the best things he could have done, as that led her to say he needed more intensive input and referred him to a day unit which was absolutely fab. They are the ones that supported him, though in all of that, I didn't get much support from the powers that be. BUT THEN I FOUND YOU ALL WHICH WAS MILES BETTER!

My son does that all the time, thought mostly to his younger brother. Though 12 he is still very young emotionally, and very much lives in the moment; I don't think he is ready to understand delayed gratification (well, yes when it is a reward, like if he goes to school OK in the morning he will get a hot chocolate when he comes home) but with delayed punishment he just can't get it. And neither could he if he were the perceived victim, the lashing out is instant, even is you so much as brush past him. As for morbid thoughts, he too has them. He loves zombies, and anything un-dead, prefers all the baddies in the movies. He will constantly talk about the best way to eliminate man-kind, and as he is so very bright has come up with some ways I hope the terrorist will never find out about... Will he actually do them one day? I wish I could say no, but I am really not sure... And yes, he too has run in front of a van and has tried to get out of my car, right in front of a truck... I borrowed a friend's car with sliding doors (so he doesn't damage other cars when he gets out) and a child lock to prevent that happening, and after having used it for 5,000 miles I have now bought the car of the friend, still needing those now. Our knives have to be kept in a locked box.

Shona, Have lots of these <'> <'> <'> <'> <'> I know how you're feeling, have had a big struggle with the very same problem since he started secondary last year, the only difference is because he's ODD as well he was extremely difficult at home and I simply couldn't physically drag him to school. It took him spending 6 weeks in a psychiatric day unit, and then another two months for their report to come out, in which they clearly explained the link of stress from school affecting him and expressing it at home, for them to listen... Unfortunately, you're not alone.

I too have had letters saying that they hoped I could attend on such and such a date... As for using a camera, I did at one point, and it was vital in getting the help we needed (well, a little of it anyway). However, I was also attacked by SS for doing it, they said I was filming him against his will and this was against his human rights... (even though he had agreed beforehand, but you know what they're like in meltdown...). Maybe having the written agreement or suggestion or whatever by one of the 'professionals' might avoid this.