Mother in Need

Phasmid, I'm in Cornwall and went through all those pages and more yesterday, tried again via your links but have only come across the same pages, but nothing re banding or anything tangible about assessments at all (other than the cutting down of them).

Nope, definitely can't find it and I searched hard and long on the local gov site. The only thing I could find regarding bands was that they are stopping the statements as much as they can...

I wonder if they'd send me that pack at least? I talked to them on the phone for ages (begging them to let me in) but they never mentioned that pack.

Mmm, not sure if my boys are considered young carers then, I don't dare leave them alone with him, but still, they have to bear the brunt all the time and behave so much more responsible then other kids their own age.

Me too. No wonder I don't seem to get anywhere...

I have heard made reference to different bands on statements, Band D and F etc, and was wondering if someone could explain what these mean exactly? I am in the process of trying to get my son statemented, and obviously the more I know the better! And the less they'll get away with...

This is my first poll, so I hope I've done this right. Would have liked to add our children's ages to it, but don't think I can. I am interested as to how successful our children are at receiving DLA, from what I have heard it seems to be a bit of a pot luck I received middle rate care for my son for 5 years for his diabetes, no questions asked and no-one else approached. Now he also has been diagnosed with AS and ODD, I have had to re-apply, but this time they've asked the school who isn't too understanding... am wondering if we're going to get it at all now...

KarenM, my son's work is fine too, he is even a member of the National Academy of Gifted and Talented Youth, and indeed it doesn't make things any easier. Sometimes I wish he was learning disabled as then he would get so much more help... Sying that, school HAS recognised he needs help but just don't quite understand how much and what kind of help, as they really don't understand autism properly. I have passed them this forum's address twice already, as I think they'd get so mcuh understanding out of it, but they haven't been yet as far as I can tell...

Does he like rewards of some kind, either in the form of a candy or a star or tokens to collect and then exchange for something he likes? Maybe you could give him a reward every time he comes off when told, as then coming off becomes a positive experience and he is exchanging one nice thing (the computer) for another (the reward)?

Sorry I can't answer the exact question, as I wasn't the one doing the asking. I live in Cornwall, and there doesn't seem to be much help out here. Oh yes, they (SS) have lots of leaflets, even a book written about what's on offer, but the reality is somewhat different...

I'd love to go but was refused a place on it as I could not attend all sessions. Some are in school time and others in the evening and ofcourse due to my AS son I can not do the evenings, no-one can/will take care of him, so I am stuck. I was really hurt about this , I need that help so much and being on my own with no family I still feel I need it more than someone with lots of back-up who hence can attend all sessions.

I was wrong, it happened on the way to school on Monday morning. He jumped out of the bus at a further stop. Fortunately he walked straight home, but anything could have happened, he could have gone anywhere or with anyone. Especially as the school didn't notify me till nearly two hours later......... I was a little, let's say, upset and rather furious when I reached the school, and refused to leave till someone important took note They are now looking into providing a taxi for him, but only after a lot more of (in words ofcourse!) They still won't admit the problem lies in him not wanting to go to school and in him being stressed out, and are just calling it seperation anxiety

Carole, as far as I know it was THE one and only young carers group in the county that had been asked. Apparently they are so overstretched that they can ONLY help children who are the main carer, and siblings are hence 'excluded'.

My carers support worker asked specifically for sibling support, and was told that there was only support for young carers, which very clearly did NOT include sibling carers.

The problem is, our kids sometimes do need those drugs just to get by till that therapy is offered, and it is obviously only offered to very few. I myself have been waiting for counselling since May, my youngest desperately needs counselling as a sibling of AS child, and I have been told that his waiting list is even longer than mine. So what is one supposed to do meanwhile? And yes, please change AS sons environment, i.e. school! Just, school as usual says that there is nothing wrong, they are doing all they can, they can not imagine him behaving like I say he does at home, etc etc etc Maybe changing the nations attitude first might be easier?

Way to go! Maybe we all need to plan together and start threatening to approach those newspapers all at the same time, maybe that'll get the ball rolling for everyone in one go, and let those for whom it doesn't work do just that and show the others schools what would happen to them if they don't cooperate fully?

Nice letter Minxygal! Siblings are indeed overlooked in so many ways, life is so hard for them and schools often don't recognise this. My eldest was threatened by his AS brother with a knife, twice, and though I passed on the info to the SENCO, it turned out that my eldest's head of year hadn't been informed. If this had happened outside of the house by a stranger it would have been in the newspapers and everyone would have said 'poor boy, what a trauma to go through'. This same event led to my youngest being terrified/hysterical to leaving me alone with his AS brother, desperately afraid for my safety . Having to explain to his teacher what had happened and why he wouldn't let go of me was not an easy thing to do (even though living in a smallish village half the lot hears AS son scream all the time anyway). I don't think either son has had any extra consideration since...

Destrum, Good for you trying to understand your brother! My AS son is 12, and he has a brother of 8 and one of 15. Strange as this may sound, but his 8 year old brother understands him a lot more than his 15 year old brother, who, like you, thinks that most of the time he is a pain in the neck and should be punished. BUT here is the difference, you are willing to try and understand your brother and my 15 year old isn't. WE too have had a lot of problems with the computer, as all three boys have to share it. Our solution in the end was the use of a kitchen timer. They get half an hour each, and whoever's turn it is, puts on the timer and gives it to me. Then when the time is up, I tell them to get off (this way they cannot ignore the timer, nor say that they had to add an extra minute because they had to go to the loo or whatever). As my AS son is so attached to rules, he is happy to do this and it gives everyone some peace. And if he doesn't come off when told, then he (like his brothers) loses his next day's go. Fair on all, BUT in a way that he can understand. Maybe doing something like this will help you with this particular problem?

Thanks Malika, Asereht and Lynyona Yes indeed it is good that one is not alone! I do find it apalling though that so many of us have to go through this and there is so little help available. What I find so disgusting also is that some months ago I had child protection coming down on me because I had taken video clips of his behaviour (seemingly against his will) in order to get some help and finally be taken seriously, as they said this was against his human rights Now he has threatened his brother's life and they just shrug it off Where is the reasoning in this? School, I have had to go behind their backs to get the statementing process started and am right now finalising my parental representation. School keeps saying all is fine and he is fine. Yeah right, massive meltdown on Friday after school but none since ....*touches wood* *fingers crossed* *praying* Why do I have the feeling that the next one will be Monday after school Counterproductive certainly is an English word (my native language isn't English either) and to be honest I often have the feeling that the so-called 'professionals' and 'experts' are the ones that are counterproductive

I got one as well thanks to this thread, I had the same concerns re the 'shady characters' (don't you get nervous and want to get in there when he is taking so long? I did!)) and also, often I don't dare leave him alone at all, so the Radar Key is absolutely brilliant. And the toilets are so much cleaner too, and NO queueing!

My son has now been put on respiridone and though it hasn't decreased his aggressive and violent behaviour as yet, it has made him sleep much better, so maybe we won't need the melatonin after all.

Have noticed that myself lately. all the stress is definitely making me eat a lot more...especially chocolate.... Could you maybe introduce some more healthier foods in a 'sneaky' sort of way? Maybe you could make your own burgers and add a teensy bit of veg to it (sorry am vegetarian myself so am not sure if that would work). Or make a soup with his favourites and buzz it up so you could add a little bit of something else in it and he won't notice? Is there any healthy stuff he does like, i.e cucumber, carrot, apple or whatever, so you could give him more of that? Or maek a cucumber salad with some lemon it it, and so slowly increase what he eats?

Keep calling her and pestering her one way or the other, and make it clear that it'll be quicker for her to fill int hat form than to have to listen to you over and over and over again. In the end she'll fill it in just to get rid of you...

Thanks all for your responses and moving stories! : I have meanwhile seen the psychiatrist on an emergency appointment who has put him on respiridone, but it is making him feel pretty poorly, with headaches and nausea. Hopefully this'll soon go away? He has also been put on the waiting list for an assessment by a psychiatric unit, to see if they can have him for some weeks to assess him and try to help him. At least some response, lets hope it'll make a difference. Meanwhile his brothers are still scared. Took both AS son and the youngest to the shops yesterday and while using the one and only toilet in the shop the youngest said to me 'mum, when it is your turn, you'll have to take him in with you; you can't leave him alone with me or he'll kill me' School is not too helpful as usual and plainly says 'this is a a mainstream school and not a special one, there is not much we can do'. So why the hell are they against statementing him? My son would dearly love to be home educated, but I can just not cope with having to care for him 24/7, school is the only break I ever get from him and I need it...

Phasmid, does this also mean that if my AS son wanted to do an after school activity, the school would have to supply extra help for him so he can actaully take part? He wanted to do a short course last Saturday but couldn't as I could not spend the time to be with him so he could attend. Are you saying that the onus is on the school here, even though he is not yet statemented?