Mother in Need

Kerry, sorry if this is a bit late, I have only just read about your situation. There are sooooo many similarities in my relationship with my ex, it is unbelievable. I decided that it had to come to an end, especially for the children't sake. I had been willing to put up with abuse towards myself longer, if this had been the right thing for the children. But it got to the point where the children were scared of him, and it really became time to tell him just where to go. Since then life has been so much easier. Instead of having 3 children and a very difficult teenager (my ex) I now only have my 3 boys, there is security in the house, they have flourished and flowered and their behaviour as improved so much as the wrong example is no longer present. Suffice it to say, now 3 years later, the boys are still not comfortable around their father and won't be left alone with him. For me and my children, it was the right decision, and I have not regretted asking him to leave ONCE. It showed me how dead our relationship had become and how I could never lean on him, it was always the other way round, etc. Life has only become easier in that aspect. Feel free to pm me if you want to talk more, I don't check the boards that regularly as I can only do this when the boys are in bed and by then I am usually so knackered I go to bed soon after. But if you pm me we can email which is easier (if this is what you want ofcourse).

Thanks for all your input, greatly appreciated. Have spoken to the new head in his unit, and she will find out where the school stands on this. Just told her that I was sure there was legislation as to make Clubs available to all, or it would be discrimination. Will see where that leads. Apparently the school governors are not very happy with his statement in the first place but the LEA has told them in no uncertain terms to quit groaning and get on with it and deliver!

Yeap, I too have been trying to get help in l earning this for years, but hey ho, Christmas never comes does it, it has still not materialised. To the point that I have now lost part of the use of my left arm because of all this, which means that I can protect my youngest and myself even less than before. But do the(SS) take note? Ofcourse not. EVERY CHILD MATTERS? Yeah, right, if it did, they'd help me protect his brothers at least, but they can't be bothered to get involved in any way.

Thanks all! It certainly sounds that school would be failing to make reasonable adjustments if the child normally is in a special unit and has 30 hours of 1-2-1, and they then do not provide a TA for the out of school activity, wouldn't you agree? I have to add, I do hate bringing up legal stuff at those meetings, or threatening with disability discriminication acts, as it really puts their backs up and makes it more difficult to communicate afterwards. And I am already going to have to do all that when I throw the bomb shell on them that they are going to have to start giving him an insulin injection during school time....they have always said they can't do that but the specialist yesterday simply said 'he has a statement, his diabetes is in there, they're just going to have to get their acts sorted and do it.' Wish he'd say that to them though.... oh well, sorry for the moan, thanks for listening!

My 13 year old son has AS, ODD and diabetes type 1. He is now (temporarily, unfortunately) in a special unit, and has 30 hours of one-to-one support there. He would like to take part in one of the after school clubs, but would not be able to do that by himself (he actually tried two years ago but had to drop out as he couldn't cope). I am sure I read somewhere that schools have to legally make after school clubs available to ALL children, incl disabled/special needs, but I cannot find any info anywhere. I'd like to have some good ammo on me when I meet the new SENCO next week, so she'll agree to giving him the help he needs regarding this.

They told me my son wasn't eligible either but after a long hard fight, it is now written in his statement and they HAVE to provide. I suppose it helped that the busdriver started refusing to take him, he ran away off the bus at one point as well and generally created more trouble than the driver thought was his due. This probably helped in getting him a taxi.

I've had this interview as well, and it went very easy. I had to take my AS son with me as I had no-one to look after him, which sort of made them see the situation. I got some ###### advice on courses etc, and was then told I did not need to attend for another 3 years.

The violence accompanying meltdowns is a great worry for me as well. In the past, when he was small, these were controlable by picking him up, physically removing him from the problem or situation, etc, so they were not so bad. But now that he has reched the age of 13, weighs 55 kg, and is as strong as an ox, I have a big problem on my hands. I CAN NO LONGER CONTROL HIM THIS WAY, AND HE KNOWS IT. As he has ODD as well, we get into some very difficult situations. And I can no longer restrain him, not only because he is simply way too strong but also because of his violence I HAVE NOW LOST PARTIAL USE OF MY LEFT ARM (and I am left handed). I have no idea how to deal with him anymore, as a single parent with no family nor any outsiders back-up, there are times I seriously fear for my other two children's safety and my own. I cannot be with him 100% every single moment that he is home; his brothers have needs to and so do i, even if it is only to visit the loo; and that's usually when all hell breaks loose, the moment I stop controlling the situation and him, peace goes out the window.

Hi, I too am a single parent of three boys, one of whom with AS, ODD and diabetes. I myself kicked my ex out of the house three years ago, and haven't looked back since. He was very violent, and for the children't safety I had to do what I did. The fact that I still loved him didn't matter anymore, he was simply too difficult and dangerous to live with. He gave me a lot of hassle re access to the kids, even took me to court but as I won he has beocme easier. Saying that, he kept saying and doing things that were so horrible for the boys and esp my AS son, that I ended up giving him an ultimatum. I refused to even talk to him, let alone let him see the boys, till he had found out what the words 'Asperger's Syndrome' meant. It took him 4 weeks, but he did it. Then I still did not allow him to see the boys till he had read his son's diagnoses (from over a year ago...). After sending him yet another three copies of this report he finally did. I then slowly let him see the boys again. But he knows, I decided what happens and if he doesn't treat the boys right (or myself even now) I simply won't let him see them. He can't really do anything about this, as he doesn't want to pay maintenance and can't afford another courtcase and he knows I won the first as he was being unreasonable then and i can easily prve that again. But yes, it is hard being on your own. I have no family at all myself, so no help from them. I do have a few friends, but none of them is willing and able to have my son for even a short while; his needs are too complex, his behaviour too difficult, his moods too fragile, so there is just me and only me. Social services is still completely ignoring all our pleas (even those from GP, psychiatrist etec), their every child matter totally stinks, there is no help from any other source, I have lost my business due to his complex needs and now have to survive on IS which is as good as nothing. Sorry, I'm waffling on now, but in your case, he is not taking your children's welfare into account at all when he does these things and therefore you would have a perfectly legal reason to temporarily not let him see them at all. Even when my ex shouts at me on the phone I tell him that if he continues to treat me like that I will hang up on him and refuse to speak for some time; which is exactly what I end up having to do. But over time this message has gotten through to him, and his outbursts are now much less and his behaviour while with the boys better. I do have to add to this that he is never alone with the boys, except for with my eldest, as they do not feel safe with him, so I am always with them. Which means that I still don't get a break, but at least the boys are safe.

My AS son is fine on the trampoline, PROVIDED he is by himself and there are no other external pressures around (other kids waiting or distracting him, rain threatening etc). he will only do bunny-hops, no proper jumping, and he will only go on sometimes (we have our own). If he is bouncing away and one of his brothers just jumps on then yes, there will be troubles, but if they let him finish and get off safely first then he is OK.

I left a question on the welfare rights board two days ago now, but still have had no answer. There is a good citizen advice burea 12 miles down the road, but they have limited opening times and I am not sure if I can get there before Monday. Most of what I have come across via those sites mentioned and others is rather vague on the whole subject, they cannot force you into work etc, well I have heard that one before. When I was approached regarding maintenance payments and i wanted an interview with them to avoid this, they first made me two appointments at totally inappropriate times (I mean, I am really going to discuss how scared I have been of my ex etc with the boys present...) and always at their offices. I told them they should come to me, they baulked and said 'no we don't do that' and I showed them where it says in their own literature and they then took advice from thier superiors and finally came to me. But only because I had beaten them with their own written rules etc. This is what I would like here, to know exactly what my position is without having to go over every timy detail to someone who has got no clue what it is like to live with an AS child and his traumatised brothers.

Transport is a huge gray area, nobody is really in charge, not the schools nor the parents, nor the LEAs I think when it comes to non-special needs children. I suppose if transport is written in the child's statement, the LEA will have to take responsibility, somehow, somewhat. As for my son, some days he has a escort, other days not, drivers change constantly so I have even given up on preparing them what might happen. But then, it is only a 10 minute journey (well, this time of year, tractors, roadworks and what have you, double that at times, but is still too short to have real health concerns (for my son that is as he is diabetic)(if they find out he is autistic and doesn't like change and hence goes ballistic then their office should have told me so). that is by taxi on the journey to school. However, he comes back on the school bus and that is a different ball game altogether, his own bus is not too bad and the driver knows him and his LSA puts him on the bus, but when that bus has broken down (you should see the busses around here, wouldn't pass their MOTs legally those buckets on wheels) and they're all cramped on a double decker with kids smoking and fighting upstairs...and not a single adult other than the driver on board. NEVER. Despite it being a proper PUBLIC bus service. I remember a similar thread before, where the outcome was that it is a complete hit and miss situation re transport and training escorts and ratio adults:children. And rightly so us parents are worried about this! Money money money, it always comes down to this, do it the cheapest way and if someone doesn't like it well they can take their own kids to school. At my sons' school they put on a extra bus at 5 pm for children who stay on to do after school clubs etc, which they need to book a day in advance. Normal children do not use these busses. Only the bulllies who are there for detention. Hence that bus is soooooooooooooooooo rough, not a single other parent will let their kids use that bus, but will allllllllllllllll come enmass to collect them. School still hasn't cottoned on that htis is happening, and if they have, are not concerned.

Thanks for the replies. that is encouraging. So far I have been treated worse than a doormat (I'd say on the same level of those 'inhabited' doggie bags...) and I am getting so pissed of with it. But I have to stay nice, this is a 6 months back-payment by now (their fault not mine) we are talking about... But what about the law though, regarding this? Thanks Gladysmay, searched through those but did not find anything useful.

Having lost my business 6 months ago due to all the problems with my AS son and school and no help from SS etc etc etc I have since been trying to get income support. Nearly 6 months without income, and they're still making it difficult, and still haven't paid a penny. They have now asked me to attend a 'work focussed interview'. I am sure I have read, quite some time ago, that single parents (me) and carers (me) do NOT need to attend these. Would anyone know where I actually stand on this? I will attend if I can, but would like to know the rules/law regarding this so I can force their hand, so to speak.

Wishful thinking. My solicitor told me that they legally have to do the assessments, but that they are not legally bound to follow through on any of their own recommendations....

I can sympathise as well, my son is 12 and very strong without being in a rage and much stronger still when in one. It really needs 3 adult-sized/strength people to restrain him, though usually it is just myself and if I am lucky my 15 year old who is over 6 feet tall; and we struggle. Since he's been on respiridone though, his behaviour has improved, and since school finally accepted his problems he has improved even more. Saying that, I nearly had to restrain him this morning to stop him from really going after his little brother. There is a book called 'Asperger Syndrome and Difficult Moments; Practical Solutions for Tantrums, Rage and Meltdowns' that is quite useful.

Oh yeah, my AS son does not like washing etc either! the smells....you don't want to know, but know all too well anyway. Changing clothes is another struggle. Though he has gotten better lately, and no longer likes his hair to be greasy; to which my answer is, gues what, 'then take a bath!!!!' He won't wash his face in the mornings either, and whenever I remind him he'll say he didn't know he had to do this as I've never told him. Ahem, x1000 or so, but no... Might changing type of toothpaste work? You can get all sorts these days, we use a fennel one but there are ones with aloe vera, or tea tree etc.

That covers my son as well and he is AS also! Clearly this guy knows squat. Any chance you could ring him/his secretary and ask re the referral? If you go via the appointments department, they should be able to tell you who it was you saw, and how to contact him. If your son has been referred, then a 2nd opinion will not be necessary. If he hasn't been, maybe you could either get back to the original doctor or ask for a 2nd opinion. I wouldn't think though, that one doctor can cancel a referral by another, esp if there not from the same team.

You're a better professional on your child than all those so-called professionals put together! Ofcourse go there and attend, and even ask them you weren't officially invited. We've had so many problems with school, wrong time to go into them now, but the whole school thing where they never listen to parents and simply refusing to believe, let alone act and help, is grating up my nerves!

Canopus, he is dyslexic as well, and doesn't know his left from his right (barely his up from down...). Once he knows a place well, he can manage fine. But when in buildings he gets less confused about which way to go then I do. Confused yet? I am.

Isn't there a teenage ward? My son was in hospital some months ago, and htye put him (age 12) into the teenage ward. Unfortunately, so if it happens again, I'll ask them to keep him in the children's one. The trouble was that as they are teenagers they are considered old enough to care for their own needs, so nobody ever came round to check on them. Well, the hospital staff itself knew so d*** little about autism nor diabetes, that I didn't feell it safe leaving him there without me. I ended up taking him home for the night and bringing him back again the next day....

My AS son of 12 still cannot ride a bike, and finds all things to do with balance difficult. Though he can do shoe laces he doesn't do them very well and I still end up re-doing them. At this, moment in time I cannot foresee him ever be able to drive. His map-reading skills are limited (despite having worked on that loads), he cannot cope with any changes to his routine so if he is planning to go to so and so at so and so, and then there are roadworks, or there's been an accident, he would not be flexible enough to cope with it. He cannot foresee what ther people might be planning/about to be doing and hnece not calculate (or instantly react) how that would affect him on the road; ie if a car in front starts swerving, I would keep a good distance from thm; if a car ahead slows down for no obviuos reason, I am prepared to slam on my breaks; he would just barge on as he could not see things from other's points of view. Split-second reaction? Into meltdown more like, or freezing but certainly not that fast reaction required. And then ofcourse there is having to man all the controls at the ssme time, be aware of other road users and confusing roundabouts and one-way-systems. I dought he'll ever drive.

Good point there Kazzen161, he is not just losing this one year he is in now (which is year 8 like your son), in effect he is losing two in a go. And straight into GCSEs next year. He'll only be JUST 13 then, he simply isn't ready and certainly won't be ready. Did your R manage to catch up and did he receive extra education in order to do that?

I'll be attending one next week, and hope they're going to give me some good ideas. It's such a difficult area to tackle, isn't it.

Yes it is a mainstream LEA school. Yes I would have thought too that it would affect their league tables, but this does not seem to bother them. In Year 11 they'll do some core programmes and fill the rest with, quess what, extra, additional, optional courses for more GCSEs... and Oh, ofcourse those GCSEs done in the previous year will be started on their AS courses. My question is, still, can they disapply, and could I use this info in some way to prove to the LEA that his needs are not being met where he is now? And what is this specialised papers in English? Are there others in other subjects?