oracle

I am someone who has doubts that Raun Kaufman (whose parents invented Son Rise) is actually autistic. There I have said it now - but I have said it before to on many occasions. If you look at Son Rise it's a mixture of common sense and cruelty, in my opinion, because I do not believe that locking yourself and your child in the bathroom for hours and hours so you can programme them is a very good idea. This is what Raun's Mum did with him, or so I have read. The common sense part is just that and I don't need to pay mega bucks for that. These things play on the word cure which I hate. I also feel they are very hard sell and in your face - just like McDonalds really - which may well make food but it's never going to win a Michelin Star for cooking is it? And you can't cure autism either. Oracle

I would be lying if I said that I never get upset watching other children and now adults of my sons (plural) age but it is very rare these days. It's special times like when they took GCSE's had their proms etc but on a day to day basis not I do not really get upset. I actually look at other 9/19 year olds and am thankful that my two are not like them. Although they are both damn hard work they also have qualities that others their age simply do not posess. I think that it's easier for me because I opted out of mainstream life - which I was able to do. So I don;t have to see so much of what other people's NT kids are up to. I also can not say that I feel more for the two with ASD than I do my eldest who is certainly a man now aged 27. But I do feel deeply for him because most day/weeks/months his life simply floats on by, passing me by, and it's been like that for years now. Every so often I make the effort to catch up with his life and let him know that I am interested and want to know what he is doing. I can't say that I don't worry about him because I do. Of course I worry all of the time about what it's going to be like for both my ASD sons when they are adult but I worry just as much that their eldest brother is going to carry the load for both of them Now while that maybe should make me feel very happy it does not because I want him to have a life of his own. I want at least one of my three to fly. But as I am told that choice is his to make and not mine. Oracle

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When my two were diagnosed with ASD within six weeks of each other I felt as if the rug had been pulled out from underneath me It was my eldest who actually made me see that nothing had actually changed. He pointed out to me that both boys were the same two boys they had always been dx or not. Does that make sense? I suppose what I am trying to say is that even if the test is positive your son will be the son you have always had and loved. And you will be enabling your daughter to make important choices and decisions if ever she should need to do so. <'> <'> <'> Oracle

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It is difficult to make that decision but I know that it can work. It has here with one of our Special Schools - well at least it's given it an extended life. One parent was brave enough to go onto local TV with another just sat next to her for support. The LA did a 360 U turn and have now extended the life of the school for the foreseeable future and we attened the Council Meeting where that was snactioned so they can't just go back on it without going back to the Council. They did this without a fight or even a word for that matter. Of course it had nothing to do with the TV coverage Spotlighting how difficult your lives are would raise their game I have no doubt of that. And without doing that they will continue to do what they are now nothing. Sorry Loraine - ever the militant that's me Oracle

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Duplicate post sorry Oracle

What you have said here sound good to me - but I fully understand why you think that although it sounds good it may not be enough to get what you want I totally agree with what you are saying pushing budgets onto individuals to arrange their own care sound wonderful in theory, in reality well that's the real world and politicians know very little about that. The one thing that has struck me about the new NAS 'make school make sense' Campaign, which I know has nothing to do with what you are talking about, is making use of your press local and national. In the pack that I have from them it's telling you how MP's do not really like to see their constituancy splashed all over any paper, unless it's a happy isn't this wonderful story. It's not good PR for them if it's a look at how we bad things are story. If there were a few families who would be happy to do this, and I know it's not something many people are happy about doing, it may just be the kick start you need for your MP to really do something. It's just a thought but I know that when we get stories in our local paper especially if you can get the paper to back you then it can make things happen. Our local rag has backed us because there is now more than me being very vocal. It all comes down to 'One Voice' which is what I have been saying for years. Oracle PS you have local TV too remember

Well done Lil Me you have done the hardest part today the next steps wont be so hard. You will go on Friday because you already know that you need to. We are here for you <'> <'> <'> Oracle

I think you need some hands on help and I am not surprised. Just living with the fear that your hubby could be posted to Afganistan would be enough to make me feel ill. One of the hardest things to live with when your child has an ASD is having to prove that it does have a disability. People, mainly teachers and professionals are constantly trying to make you feel as if there is not a problem. It can get to the point where by you ask yourself is it me. The answer is no it's not you it's them but sadly because you can't see autism it is not taken seriously until it jumps up and bites you on the face. Do you have a support group because they can help you to feel more confidant because they will believe you and understand. There is also the Carers Centres they often work alongside SS and have people who can attend meetings with you and support you. I have no idea where you live - sorry if I have missed that - but there should be a list of groups in your area. For starters there could be a Network 81 befriender who could into school with you and help sort out a statement. It would help to take the pressure off you a little. Oracle

Is there anyone who can be with you tomorrow to bat for you when SS comes round to visit. Even just to be there, listen and take notes? Don't be put off and don't give up you 'can' get help and respite even if that means a fight. Do you have a local group who can help and support you? We do that for families here and it's amazing how just having someone speak up and out for you can help. You are in a tight spot and need help. It's not about waiting until you are in crisis SS are there to make sure the crisis does not happen. Oracle

Hi Smiley, She looks very much like a dog that grew up with me named Shep he was lovely and lived till he was 16. I am however in the same shoes at you are at the moment but with my little piggy Chocolate http://i106.photobucket.com/albums/m270/or...im/IMGA2205.jpg He has a lump which you can see in his pic and it has turned out to be an abcess that burst three weeks ago now. It stinks and some but it's not hurting him and the chances are it wont. It appears that piggies and rabbits can live with these things for sometime - so long as you can stand the smell Terry and I are having to clean it out three times each day which neither of us wants to do but how can you put a little creature to sleep just because he stinks. This is in part why we have added another two little pigs to our family just in case. It's not easy is it http://i106.photobucket.com/albums/m270/or...aim/Pepper4.jpg http://i106.photobucket.com/albums/m270/or...1aim/Honey2.jpg Oracle

Lil me <'> <'> <'> I have to agree with Baddad here and I would not hide what had happened or how. I also agree with Baddad about SS especially if you are being honest about this and trying to do something about it. I would ring for an appointment with the Consultant and stress that it is urgent. This is not really related to your situation but in a way it is. We had the Speach Therapist here on Tuesday to assess Matthew and his progress. After the assessment she had a cup of coffee with us and chated to us. Matthew was telling her about a new game that he had and about comments David made about him playing on it - all negative. I told her that my two have an intense love hate relationship which tends to lean heavily to the hate side (although that is begining to change slightly ) however I made no secret of the fact that David says some terrible things to and about Matthew and Matthew can be just as nasty back. Matthew has on occasion left claw marks all over David's arms and David has on occassion held Matthew in a head lock. She commented that we appear to have a very high level of honesty with each other which she said was very refreshing and I agree we do. I replied that I also share that honesty with others because I have nothing to hide - and nor Lil me do you. <'> <'> <'> Oracle

Well the nearest one to us is a 2 and a half hour drive away so it looks like we will have to wait fro the DVD Oracle

Also a valid point and one which I advise our parents to use is that ASD is a developmental delay. I have been told by a leading speech therapist that if you take one third from their age then will leave you the emotional and maturity age. So if your daughter is 11 years old then would you be sending a child of almost 8 to school alone? Her sister should not even come into the equation and I would be tempted to leave her out of it as they may use this in their favour. Help is needed to get your daughter to school it should be their responsibility. Oracle

You can't just say to a child with ASD stop doing that - whatever that is - you have to give them an alternative - what ever that may be. Even though she is only six she needs to know that she does not do that anywhere else other than in her room and I would be quite strict and specific about that. Giving too many options is not a good idea. Just say this is where you do that and no where else. She may even need to be taken to her room but don't stay because that way she still has an audience. I agree that a social story may be a good idea because she needs to know that her body is private and that we do things like that in private. I suppose you could say the same thing about her bum because it is again a private part of her body. Oracle

Our intervention has been Home Education DIY style. No help and no input from the LEA at all. However we do have access to the Out Reach Team and they do come when I need them and I have an excellent raport with them and have found them to ber very helpful and useful. They can point me in the direction of resources and because I want things to work out I take their advice - which is more than the schools usually do They have helped with Social Stories etc and Matthew loves our support worker We also get speech therapy Matthew has a full assessment on Tuesday, which again Matthew enjoyed , and I am waiting for the feedback. First thoughts were that he has a high level language disorder. I feared that HE would stop this kind of intervention but for us it's worked out better than I had dared hope. We saw his Pead annually or more if needed but sadly she is now very poorly herself and on long long-term sick leave The Pead that has taken her place is just signing us all off because autism is not an illness We looked at things like Connective Therapy and Emotional Literacy and take bits from both and work with then with Matthew and David. We don't get OT although I think Matthew needs it and we have never had Physio Oracle PS spell checker is not working - sorry

<'> <'> <'> Kerry I don't know that I have any useful advice here but I think that you coule well have a serious problem and someone needs to sit up and listen and do something. Starting with the gum why can't she chew it? Yes I know because no one else is allowed to but if it's acting as a stress ball then why not. How far are they going to go to accomodate her? Maybe if they meet her half way it will help her to settle down. Shouting out inappropriately is part of her condition and they have to make damn sure when they give an instruction it is crystal clear. IE you are now allowed to chew gum at all spit it out and DON'T do it again. As for walking to and from school my biggest concern here would be for her sister. Sorry but it would because she will not be alone if trouble breaks out and her sister will end up getting thumped to. She can not and should not be responsible for her sister. This is awesome and no child should be put in this position. Statement or no statement there has got to be other arrangements made here. Is there an outreach team that can be brought in to help. Why does she not have a statement? It sounds like she needs one to me. Her difficult behaviour is probably down to the fact that she is so anxious and afraid at the moment but by the time she calms down - if she calms down - the damage re walking home could well have been done. For Sophies sake something has to be done before it all goes pear shaped. Oracle

I also agree with Justamom We had something similar but nowhere near as sinister as this. A little girl that lived locally was inviting all of the boys to see her bits and pieces in return for seeing theres. She was also urinating and pooing and asking them to do likewise. This was last year so Matthew was 8 then. I told him that our bits and pieces belong to us and no one else. Friends don't ask you to show yours and if they do they are not your friend because it's something we dont do. Matthew asked millions of questions and I answered them as honestly as I could. I have never been one to fudge issues and am upfront about these things. I know that you can go too far with this approach and you have to be careful but earlier this year I went to a conference where the speaker was Lynne Moxon and she did a sex workshop and really opened my eyes. She explained that we should not be telling our kids which bits are OK to touch and which are not - the safest thing for our kids is a 'no touch' rule because you can't get that one wrong. She said that it was best to introduce this from a young age and then as they matured and developed you could expand on this when they are able to comprehend fully what this might lead to. Oracle

My son played Steve Irwin in one of our Pantomimes and he went down a storm wrestling a croc and doing all of Steves Famous lines. The whole audience loved it and everyone knew him here. It's so very sad he was a BIG man and will be missed by millions around the world. Oracle

Aw Suze <'> <'> <'> how awful for you. Thinking about you because pets are one of the family too. Oracle

<'> <'> <'> Have some of these <'> <'> <'> It's been quite some time since you were last here and it's quite obvious from your post that you have been through hell and not quite back yet. I am full of admiration and respect for you and I for one know how hard it must have been for you to take the decision that you did. You are a very brave lady badly let down by the system. It must have taken a great deal of courage for you to make the call to Child Line and shame on the system for pushing you to that point. You did what was the best thing for 'all' of you at that time and I hope that no one will condem you for that. I certainly wont. It's good to see you back Carol Oracle

<'> <'> The one thing you have got firmly on your side this time should there be any hicups is that 'you' were right and she was wrong with regard to your parenting skills and should the need arrive I would quite frankly be telling her this. I would remind her that your daughter was not anti-social, and no matter how many friends had been invited round or ropes bought to teach her how to skip, she would have still had the same problems. Sorry but I hate know it all teachers who know nothing. On the other hand if she has mellowed and your son has the confidence that your daughter lacked maybe all will be well I do hope so and maybe even your son can give her a run for her money or is that a very naughty thought Oracle

OMG ask her to bottle the secret of her success - or maybe show her these replies and she will understand how lucky she was I would say that your son worked the score out for himself as our children often do But hey you did it and you seen 'the man' himself and came back to a relative calm so well done you Oracle