savagevixen

Update. GP not keen to refer. Gently explained that ASD is a very difficult condition and it was natural for us to look for reasons and ways to make it better, but in reality it was unlikely to make any difference Basically said all this intolerance stuff was overrated.

I read your post and really identified with it, and yet I did not realise the age of your grandson. My child is 8 and could easily be described in this way. His language and destructive behavviour are absolutely frightening. His threats and swearing are out of this world. The damage to the house is constant. We try so hard to get on top of it. Our 4 daughters have impeccable behaviour. I am saddened to think that in 10 years it may be the same story. My BIL is clearly the same and at 28 has just (last weekend) had a meltdown, smashed in 2 doors at his parents house and hit his brother (30) repeatedly round the head with an iron. Their house is a standing wound of destruction. He is a lovely caring man, but his inability to cope is out of control. He is not diax and was labeled a naughty child at school. He was expelled from every school he went to. He has acheived later in life, at college, but he is still so different. I am scared for my son. (He has little contact with the BIL) and does not witness this behaviour, the most violent thing he sees is Scooby Doo. But how do we help them manage themselves?

Thanks loulou. I must admit I feel fairly confident that on a diet of water my son would still be erratic!!! I have made a GP appointment for this afternoon. Thanks guys

Hi, Trialed Ritalin for six months. Became anxious, depressed and had terrible tics. Doctors claimed the tics were not down to meds, prescribed clonidine for the tics. Strange that once we stopped the ritalin the tics stopped. Would have trialed something else, but prescribing doc would not try concerta, as ritalin was the least likely to give side effects. They decided that his side effects would be worse on anything else. Child Psychiatrist then decreed that his prominant 'condition' was ASD, and this was why meds had a neg. effect. The conclusion now is that ADHD meds are not for him. (The rebound was UNBELIEVABLE, so bad) Basically when he took meds, we lost the essence that was our son. And as we gave it a fair trial we are to scared to go down that road again. He suffered tics, sweats, bad stomach, insomnia. But he was more subdued, therefore easier to manage.

Hi I applied and received Middle Rate care for my son. This was with the ADHD diagnosis. I haven't yet told them about the ASD diax in November. It was awarded for 2 years. Vix

Hi, My 8 year old diax ADHD Aug 05, Aspergers Nov 06. He is very difficult, sensory issues, behavioural probs. Currently out of school. Awarded 80% statement (but can't find suitable school). At home his hyperactive behaviour and appalling mood swings drive us mad . I know that to a certain degree these are part and parcel of his disability, but there must be a way to reduce the degree of effect they have on him and the rest of the family. I am interested in diet and food intolerances in particular. He has never had any tests or referrals Question 1 is how do you get these or is it better to pay? Question 2. What is the best diet to try? His diet is bizarre, very difficult to feed and likes extremes. Drinks milk by the bucket load and loves chillis. Would eat crisps and cr*p 24/7 if I let him. He is also an absolute sugar junky-he craves it all the time. We are vegi and I use a lot of lentils and pasta. When he was first referred we were told to try fish oils, he has been taking the halib orange one on/off for 2 years. Can't say we've seen much improvement. Having just decided to look into this I have realised that 1) He has permanantly enlarged glands in his neck 2) He sleeps with his mouth open as it is very difficult for him to breathe through his nose. This may sound bad (to have just noticed it) but as a infant he had tonsillitus 8-9 times a year. We attributed these to that. The tonsils were removed in Sept 04. We assumed that these were just habits from back then. As he doesn't like being touched, I don't try to get to close (in the sense of looking in mouths, ears etc) Is this relevant in anyway? Would love any responses or stories of your own. It is a minefield out there Vix

Thanks so much for your responses and sharing your lives with me, I really appreciate it. I never realised how little real help there was for our kids. It is a good job my provisional statement came through on December 22nd. If it had been earlier I would have just signed it and sent it back. They were all very careful to not let me realise how important my role was in completing the parental response. We withdrew him from school and his behaviour has improved enormously. He is so much calmer and easier to manage. An appointment yesterday with the child Psych, led to her agreeing that he shouldn't be at the school he had been attending, but she wouldn't sign him of on medical grounds, as he was in her opinion needing to go to school, but it had to be the right school. And so it bounces back and forth between Medical-Education. We named a special school in the end, as his experiences in mainstream have led to such a major breakdown, we feel he needs the nurturing and support that only they can provide. The head teacher of his current school, sent a letter that was intimidating and bullying, trying to force us to send him back in. She is going to wish she had not. And so now we wait to see what the LEA make of our response. Hope all is well with everyone Vix

Hello everyone, I am wondering if anyone can provide me with any information or links to help with my son's statement. He was diax with ADHD in Aug 05 and had a (private-but supported by NHS) Asperger's diax in Nov 07. We allowed a trial of ritalin (prior to realising he had ASD), which the school found delightful but left him with anxiety, poor appetite, terrible rebound effects. School (surprise) termed him a naughty boy and the head, who is retiring has subjected him to 2 years of misery (unintentionally, but refusing to beleive his diax). He is 8 on Fri. Since Sept he attended school 9-12. In Oct excluded for 8 days. Returned under behavioural support for 1hr45mins a day. This lasted 5 weeks, then upped to 3 hours before xmas-this was with 1-2-1 support. Returned thurs 4th Jan, into class with newly employed LSA. Excluded Fri at 10.10am as had meltdown in class when they asked him to leave, he was loving it and refused, physically removed from class by staff. I am in possession of provisonal statement (have extended the return) He has been awarded (.8) YEH however it is very wishy washy and non-specific. It was rushed through in 11 weeks. We want him to go to special school that can meet his needs. As he has threatened to kill himself 3 times the doctor has signed him of for a few days and we will nt allow him to return as he is so unhappy. (School said he could have one last chance.) Currently the Ed Welfare Officer is applying for Link Ed. Head phoned me today really hacked off as she wants him back in school-but how can we let him be their guinea pig?. I explained that the medical team generally were supporting the link ed and she was clearly angry (Does she not want the best for him? It is all about her and not his REAL needs. What do I write and how do I do it? There is obviously much more to this story! (Including several unofficial exclusions and my son being seperated from his class for long periods) School clearly had no support and for him it came too little too late. In the days since his 2 day exclusion -and his non-return to school he has been so much calmer and tried really hard to manage his (at times very violent and aggressive) behaviour. I really need advice and support of what is right, and the correct way to do things. Forgot to mention he is extremely high functionning and this is why the school felt he was so capable and bright and just messing around. He has not done any real work since March. Many Thanks in advance Vicky