Mother in Need

At the beginning of this school year I made my own home-school book and explained its use to the SENCO. She sort of did this for a few days and then complained she didn't have time for this and it was too difficult to get it back to my son at the end of the day. Then it 'mysteriously' vanished. I had another try today with the new SENCO, and requested for a home-school book to be in place as I have a need to know what happens in school. I.e. something happened yesterday that kept my son in almost continous meltdowns from the moment he came home at 3.30 pm till he went to sleep at 9.30 pm, and started again at 7 am this morning and didn't finish till 11 am or so and prevented him yet again from attending school. This new SENCO did not seem interested in a home-school book, and said that they keep their own incident books. I said, no, not just incidents but even small things, like lesson 1, he worked well even though most others in class did not; I explained that in an instance like that I could see and make school aware (as they haven't got a clue, though I was tactful enough to not say that......yet) that that situation actually greatly stresses him out even though he appeared to be fine. Oh no, the reaction was quite strong, this was not acceptable at all and they could not ask from their TAs that they fill in something like that and certainly not on a lesson by lesson basis. So, I was wondering what others experiences were/are with home-school books? My son is 12 and in year 8, he has AS, ODD, dyslexia, dyspraxic tenencies and diabetes

Que bueno!

Ian, where do you suggest that all these tests are done, both via the NHS and private?

My experience with the NHS is that if you move house, you can stay with your old doctors/specialists etc, even if you are outside of their catchment area or even in a different county (have done both myself and have been able to remain with those doctors I wanted to).

yes, so do I!!! Though they got quite a bit of it at school today, because I was there they jsut said htat 'he was playing me up'

Yes there are, the way that PE lessons are organised here is very specific to this country.

P.S. Though the series is specifically meant for dyslexic children, it is ofcourse useful for all sorts of kids, and to be honest, I don't know why ALL kids don't learn with schemes like these. They make much more sense, the words build up really easily and they are much more fun and rewarding for ALL!

I home taught my kids for quite a few years and my AS son is dyslexic as well. I had BIG trouble in teaching him to read (and spell etc). In the end it was the specific dyslexia reading programme 'The Blue Pirate' that did the trick. Learning word lists is one of the most boring and senseless things to do as they don't make any sense and don't 'connect' in the brain to anything else! The Blue Pirate is a wonderful set of reading books that starts extremely simple and works up to quite complex reading. For instance, you get a page with a wonderful picture of the Blue Pirate and underneath it'll say 'blue pirate', then a page of the Red Pirate and it says 'red pirate' etc. As the child can see from the picture what it is supposed to say, they 'read' it and get a real buzz from it. Then it slowly builds up, 'this is the blue pirate' etc. The stories are great and the pictures delightful, My son loved them and we used the series for years. I borrowed it though, and have long since given them all back, so I can't tell you any details like publisher and ISBN numbers. Sorry.

Wow, mine came in this morinng as well! My son of 12 doesn't have a health care plan (he has diabetes) should he have one (page 118)????????? That would be interesting to know, as so far school have refused to take full responsibilty and as he has AS+ too, he his not capable of managing this himself.

Have ordered it as well and downloaded a few other interesting and useful PDF's. Thanks for this!

Thanks Stressed out Mum, that might come in useful. Mind you, I gave my son's college a whole pile of the NAS leaflets (even though the info in them is quite limited) to give out to all the teachers etc who work with my son, but they never did (as far as I could see anyway, I asked one of the TAs and she had never had one). Cooperative, aren't they?

The actual request for my son's assessment was made via a solicitor (had to by-pass school) but then my parental rep covered 90 whole pages .... it was a lot of work, but I have been told by someone on the 'inside' that they would not have passed on to Stage Two if I hadn't done that, they needed the info as school didn't see that there was much of a problem they still don't...

Thanks Suze, no unfortunately they did not. They felt that because he is so very bright, he should be able to manage at school with 1-2-1. I am beginning to seriously doubt this though... The good news is that I managed to get him to school today, and I think they got my message somewhat that they really had to do a lot more, because he says he's had a good day and even his English teacher tried not to shout (he seriously dislikes teachers shouting) which he usually seems to do most of the time (well, no, that's my son's impression!). I've had a day off, went on here, had a bath and slept all the rest; I needed that! Tomorrow morning will say more about how his day really was, as all comes out when he has to go back there. But even if he goes, most days is a fight in the mornings and I'm tired of it, and so are his brothers.

My son is already on respiridone, and I slightly increased the dose before Christmas. When I brought the dose back to his normal 1 mg a day afterwards, his behaviour instantly deteriorated so I put him back on the 1 1/2 mg. This is without the doctors knowing, as they are near impossible to contact and once contacted I would still have to wait a month or two for an appointment so I have just gone ahead with it. Fast tracking barely happened when he threatened his brother with a knife twice, so it certainly won't happen for so small a matter. As for the statement, yes I am hopeful it will make a difference because IF it says he needs 1-2-1, then school cannot refuse to do so. But if it doesn't........... He needs more LSA help than the first 20 minutes, he is soooooo immature emotionally that he needs help all throughout the day. School just CANNOT see this, because he is so incredibly bright they can simply not see his emotional age/state. And as he can't either... They feel he needs to 'take responsibilty' and 'tell them when something is wrong and what'. Yeah right, he is not capable at all of doing this, but they cannot see past his adult use of language etc and feels he is a good communicator I have got a solicitor involved already, and will talk to him about this, but am not sure how things stand financially with the loss of my business, so simply cannot build up large (or small) solicitor's bills. I realise that the simplest solution is to home educate; I have done this in the past for 6 years, hence I know enough that this won't work now, he is too oppositional for me to get him to learn anything, and also, I need that break from him. I love him dearly, but 24/7 without ANY break ever, is not what I can cope with anymore.

My 12 year old AS son has just spend 6 weeks at a a specialist psychiatric day unit for assesment and therapy, the idea was that they would help him reintegrate back at school as he totally refused to go as school was not meeting his needs. This 'reintegration' did not come to much unfortunately, though promises of improvements were made. Well these were obviously forgotten again during the holidays, as they have not been put into place. My son fully refused to go to school this morning, which is a very normal scene here (and scene is definitely the right word). So I spoke to the deputy head in charge of SENCO on the phone, who basically just said that they have done everything they could all along, that my son should take more responsibilty (to which I pointed out yet again that he has an emotional age of between 3 and 7 only), that once he is at school he can manage perfectly (yeah right, that is why is so school phobic), that he is defintely not going to have 1:2:1 support (even though this was recommended by the specialists) and that 'unfortunately that's all there is.' School itself slowed down the assessment process by nearly a year, till I had enough of it all and employed a solicitor to by-pass the school and request the assessment direct. We are now on Stage Two of this process, but I have been told that it will take till Easter before he'll have his statement (IF he'll get one). I estimate that his attendance rates for the last term was below 20%, and the way we are going now, it is going to be nill. He is not receiving any education this way, and I am stuck with him. I have lost my business by now as I can never ever work, and I am not looking forward to having him 24 hours a day, 7 days a week, and on and on, without EVER having a break from him. Can't even close the door to the loo and hide in there for five minutes... Can school be held responsible for not meeting his educational and emotional needs by not creating a safe enough space and personal TAs and hence he has become school phobic? Or will they just say that they have done more than is their duty as this child is not statemented yet and therefore he should be happy with whatever he is given, even if it is not enough? What can I do/should I do between now and The Statement?

It is all definitely wrong, and, I think, only motivated and regulated by money and money only. The real person behind all the difficulties (i.e. us) are not seen, nor do they actively want to make a change for them. To them it is just a job, and as the ones I've met are not too bright, it might have been a matter of take this job or don't work, but there is no real personal aspiration and inspiration in these social workers. That's my feeling anyway.

I think the idea is brilliant and have done the video clips myself, and yes be warned, it is like adding fuel to the fire. HOWEVER when I sent it to social services they accused me of abusing his human rights........ they were quite nasty for quite some time, and they also accused me of bad parenting and all that cr*p. This was before he had his diagnoses, but once he had that SS disappeared into the woodwork and only came out when threatened regularly with legal action. All I want to say is, do be careful how you present those recordings and keep a close eye out on how they're reacting to them, it might turn things around into a completely different ballgame Sorry to be so gloomy.

I'd love to know the answer to this one... My son is 12 and too heavy and strong to be moved to his room, and he simply refuses to go (has ODD as well) and I simply don't know what to do with him a lot of the time. And oh yes, he is not much beyond age 2 emotionally when in those moods (up to about 7 when OK). The 'NT' treatment does not work with him, it is depending on the circumstances whether I give in or not, but woe behold us all when I don't.

Does someone have an idea? Could I ask for the carers assessment for instance for help with the housework (I work in the day and don't get a chance to do much once my son is home), could I ask for help with my other two boys as they are missing out so greatly, could I ask for respite so I can do something for myself for a change like take a bath or go for a walk? For my son's assessment, could I ask for someone to spend time with him so he has his much needed one-two-one and can then talk and talk and talk to someone, leaving me time to spend with my other two more neglected children?. Whatever else could I ask for for him? Are these examples correct as to the differences between them, are they feasible and are they obtainable? Is there anything else I should ask for, or at least make them aware of? Any ideas here someone?

My ds is also diagnosed with ODD, in co-junction with his aspergers and dyspraxic tendencies (and dyslexia and diabetes). He is mostly oppositional with me at home, but can be so also wiht other people, especially when more stressed out. At school though they seem to see it more as teenage rebellion and refusal to do as he's told, which doesn't help the situation. At home, as long as he can do what he likes and when he likes and how he likes it and with whom he likes it, he is fine till something else stresses him out. But then, how much is ODD and how much is AS is hard to tell; and when is he simply being a teenager?

Over the years you learn to apply strategies to deal with the problems you encounter. like with sayings like 'pull your socks up', my ds would immediately first pull up his socks, but then you can see him think 'o no, I was not supposed to do that, it has another meaning too!'. so he has learned the meaning of the saying (and ohters like it) and can now apply some of them. And in this way you learn a lot of things and adapt. Am I making sense here? What I am trying to say is, that you could well be AS, but have learned to cope with some of it over the years, hence making the AS somehwat less apparent.

Thanks for sharing that, it's special!

My son has been on risperdal (risperidone, they are indeed one and the same) for some months now, and it has made a huge difference to his quality of life, to that of his two brothers and ofcourse to mine. I too ran out of them just after christmas, and the difference was pretty instant and obvious. Won't let that happen again!

Great news HH, well done to both of you! I know you have fought so hard to get the right provision for him, so it is extra great that he is responding so well! And my oh my, the support at that school is sooooooo good. I would love to 'borrow' that SENCO!

Another thing that might be part of it is that maybe he likes to ask the same question every time? My son does that, he will ask the same question time and again, whether I've answered it or not doesn't matter, he'll ask the same question sometimes hundreds of times (well, that's what it feels like anyway). And then when he has finally had enough of that one, he'll go on to the next...drives me absolutely bonkers...anyway, I don't know if your son is like that?