Viper

Hi everyone, I've been a bit upset lately, after Bens pre DX but had to post this as it's been eating me up. Ben's future head teacher, he starts school in Sept, rung me to find out how we got on at Guy's. I told her the results of his ODD AS and SAD and she said "I've never heard of SAD but we can deal with ODD and at least he only has AS and not Autism like you thought, it's not as bad as Autism" I was stunned and angry, I really didn't know what to say. We always said he has an autistic spectrum disorder, we have never refered to it as "Autism" and what does she think these disorders are if not Autism related and does she really think I feel beter about a DX of three conditions as opposed to the one we thought he had. I despair of my poor son going to a school with such an ignorant head. I was worried about him going to school before but now I am out of my head with worry. Viper.

I find having a mug of horlicks (yes I know I'm getting old) and then when I get to bed, if I start to think of things I give myself a good talking to (in my head) I tell myself it is not worth thinking about things as there is nothing you can do about it this time of night. Then I put myself it a completely empty white room. The other thing I do is unpack my thoughts into a box, then close the lid and seal it shut so you can't think about them any more, they are sealed away. Might sound daft but it works for me and if my mind wanders remind myself of the box or the stern talk. The one other thing I can say is don't lay in bed if you can't sleep, get up walk about sit in a room but don't just lay there, it's frustrating and you end up anxiouse. Then try again. Hope that help a bit I know how it feels. Viper.

The only time I have heard of a similar thing is a boy I knew who had Prader willi syndrome. A condition where the body dosn't know when it is full. Maybe someone else will be along soon who can help. Viper.

Hi everyone. I am having a hell of a time with Ben, he has at least 4 rages a day and there is always anger simmering below the surface. His rages are full blown punching, kicking and recently scratching attacks that last for upwards of half an hour. I have to hold him sometimes to stop him hitting me or trashing the house. I used to give him time out until he calms down but the only place I can put him is in the hall and he just runs upstairs now and trashes the bedrooms. The smallest thing can set him off, I can say Ben have you finished your tea and he will scream at me "shut up" he tells me I am nasty and he hates me for no reason then he will punch me or kick me repeatedly. He told a friends father to shut up the other day, he was very good about it as he knows Ben has problems, his daughter kept saying "but dad he told you to shut up" and he said "well he is feeling upset". It's getting very wearing and I feel exhausted by the end of a day. How often does your AS kid rage in a day? Viper.

Hi Kathryn. I thought the same, I am only half way through book 6 but also noticed how it keeps refering to her lack of tact and stating things without thinking how it will effect others. Also her dress sense is questionable. If you have it on the brain then so do I, I always diagnose people, My eldest DD has a boyfriend with dyslexia and his little brother is always hurting himself, he broke his ankle two days ago and a few days before that he bumped into a tree and needed stitches in his head, he also falls over all the time, my DD says he will be walking along and just falls over. My DX is dyspraxia. Viper.

KarenM There is another tread calld "anyone watch big brother" and everyone in that thread hs said they think he has AS. Viper.

Thank you everyone. How could I have been so silly, you are all wonderful people and I need you all. I have been going through all sorts of emotions. I felt I had been giving advice and oppinions on things I knew nothing about. (even though I have a daughter with a DX of AS) I also felt on my own on here, like I was a square peg in a round hole with no one else having a child with ODD ( now someone will prove me wrong) When I look at the symptoms of both disorders they do cross. On the subject of seperation anxiety, the consultants were very good and did point out it was not something we had done wrong as parents, it is part of who he is. Thanks for all your kind thoughts and wishes. I will be around, but I will lurk for a bit untill I have got my head sorted out. Viper

HI, some of you know about Bens pre DX of ODD and seperation anxiety. I know he has some AS traits but I'm not sure if I belong here anymore, I feel like a fraud. I even wonder if my DD DX AS really has AS now, maybe she has other things going on too. What I need now are any links to these conditions that can help. The one on ODD on the forum is not working and my puter is playing up so I can't find anything. I love all you guys and gals out there in cyber land and feel so humbled to have you as friends, you are all so caring. All the messages of real concern when the bombs went off while I was in London made me feel so cherished by people I have never met . Thank you all so much. I wish we could have a huge party and meet everyone. Viper

Hi all. I had some news to cheer me up a bit tonight. My hubby has been in France for the past week and I have dealt with a lot on my own, he rung tonight and told me the family he is staying with (he is a student studying french) have insisted we stay in their house for a week while they are away. He has stayed with them a few times now and they think he is wonderful unlike most of the students they have. Hubby said no he couldn't but they said they would be offended if he didn't. What wonderful people , we would not be having a holiday this year if it wasn't for this chance as money is too tight right now due to hubby studying. So we are going to France for a week in three weeks time, I can't wait for the break, chance to get away from the stress of the past few days. Viper.

Hi everyone. The sledge hammer that is realisation hit me today. I was so exhausted yesterday that I don't think I took it in. My son has ODD amongst other things, I don't know a lot about it but it scares me, and the little I managed to take in last night all makes sense, he fits into it very well. I have looked briefly at the subject before but found it too disturbing to go into too deeply. I love my boy and don't want to see him as the monster the texts seem to sugest. I am crying as I post this, is it as bad as it sounds, will he turn into a nasty child who hurts people just for the sake of it? I suppose if I am honest he already does. The consultant recomended we try some behavioural strategies and then if they don't work they will try drugs. I have to go and sort myself out I am feeling a bit of a reck right now. will post when I feel able to cope. Viper.

Hi Lesley, I am pleased I went yesterday but if I had to go again and could go by car I would take that oppotunity, I don't think I will go to London by train again for a very long time. The reality has only just hit me, yesterday I was totally exhausted, I was up at six didn't sleep the night before and had the most intense questioning session you can imagine and my hubby was not there for suport as he is in France. Then to be herded onto a train to get us away from the capital was the final straw, it all turned into an exhausting experience that I won't be looking to repeat. The reality of the results has hit me today and I am a bit fragile at the mo. I wish you all the best for your appointment and hope you are safe. Viper.

Hi all. Where to start. We were taken to a room with four specialists and each took it in turns to ask questions about their specialist subject. Then Ben was taken off with two of them and I was left with the main consultant who asked loads of questions. Ben was being assesed through play in another room. We then had time to get a cuppa while the consultants tradded their findings, I was called back in and told what they had found. Ben has several different things going on but not one that they can DX right now. Let me explain. He has some AS where he sufferes with the rule following thing and change problems, but with adults he is fine with his social skills. They did say they need to see him with his peers to really know. He also has ODD and seperation anxiety. I always thought it was strange how he says " mummy I was so worried about you" when I've been in the garden the whole time. He also worries his dad won't come home from work and about other members of the family when they are out. When he is out he just wants to come home. I did suspect ODD a while ago but decided not to look too deeply at that stage. The team we saw today want to come and see Ben at school when he has settled in and find out how he gets on with his peers. One of the team is going to ring me in a few days, I have to make a list of things that we have most problems with and he is going to give me addvice and strategies to deal with them, he said he would do it in person but as we live so far away it will be over the phone. Overall I am pleased with the outcome, well not pleased but at least we know we are not mad. I am a bit shocked he has so much going on but I did suspect it was not just AS. Viper.

Hi everyone we are home safely, thank you all so much for your concern. We got on a train at london bridge to charring cross, to catch the right train back home and as we were a bit late we decided not to stop for lunch. We got on a train and a lady behind us got a phone call asking if she was ok. Thats when we heard about the bombs, another young girl was meeting her friend for lunch and was evacuated from the tube so she jumped on the first train home. I am so relieved to be back, we must have got one of the few trains to be leaving at that time. One of the platform staff was very nervous and trying to get us on board quickly, he must have known what had happened. It was a case of double bluff, they thought we wouldn't suspect anything so soon after the last attack, they were right. One of the worst things about going on the train was how suspicious we were. There were two black men sitting near us and we couldn't help but be worried, also on the train to charring cross there were several women wearing burkas (those scarves they wear to cover their faces) and again we were worried. That is so sad as I am not in the slightest racsist and these people were just innocent passengers, probably just as scared as we were. Is this really what these terrorists want? I will post seperately on the results of the trip as it might get lost amongst all this. Viper.

The day is finaly here, I have a mixture of emotions, Excited at the thought of a final DX. Scared at the thought of a final DX and worried about going on public transport and going to London. Wish me luck and Iwill let you know what happens. Viper.

Just been watching BB and Eugene has said his mum has dyslexia. Is that connected to AS? I have a daughter with dyslexia and I also suffer from it(self diagnosed) Viper.

Good morning. We have a problem with manners, Ben sneezed and when I told him to put his hand in front of his mouth, he asked why. I explained about spreading germs and he said, if I put my hand in the way it will get covered in germs, why would anyone want germs all over their hands. I can see his point and with AS logic I can't persuade him otherwise. Imagine the problems when he goes to school etc. Viper.

Hi witsend. Sorry to say this but since my DD got her DX that has been it. No help, advice or even contact from anyone and that was 5 yrs ago. Not sure what is suposed to happen but as far as I can tell your on your own unless you hit a problem with school then the school want to know what you are doing about it. Maybe somone else has had more luck. Viper.

Well said James, both my NT daughters have told me on a few occasions that they hate me as has my AS son but on the other hand my AS daughter has never said it When they are so angry they say anything they think will hurt most. As the saying goes, you always hurt the ones you love. When my children say these things I just turn it round on them and say "well I don't like who you are right now either but I will always love you." It seems to stop them in their tracks, they are still angry but seem to stop the abuse. The thing I find hard is when my AS son is upset and I can't comfort him. Yesterday for example, he was out playing with his sister and some friends when he got upset (no one seems to know why, it happens a lot), he came in screaming and growling and when I asked him what was wrong he just screeched in my face "Shut up, leave me alone" He carried on growling and throwing things, (dice from his game and screwing up the money) I could not get through to him until he was ready. It is so heart breaking to watch him go through this without giving him a hug to comfort him. Viper.

Right, the reason's I don't drive. All of the above. Yup, thats right I've tried it but didn't like it, several times. No sense of direction wouldn't trust myself not to get distracted with kids in the car. Self diagnosed dyslexia, so left and right are a bit confusing when I have to think fast. Plus other implications, like map reading, sign reading excetera. I'm already getting fat, so driving a car would mean less walking = more fat. Can't aford two lot's of car tax, insurance and all the crash repairs I would run up. It would cause so much trouble trying to find a car I have parked. I can never remember where my husband has parked so I would end up walking home anyway. and I am doing my bit to stop global warming. To sum up, I just can't do it. Viper.

Hi, The first question, I think I can answer. AS can cross all races, we have a member of the forum called Shona who runs a suport group for asian families. I'm not sure what their race is but I think they speak Urdu as she was asking about books in Urdu a while back. As for the rest of the questions I will wait and see. Viper.

Thanks TM, I can't wait, we can have and valium cocktails, and girly chats right up untill half nine at night, and these nurses you mention, can we have hunky male ones, just as eye candy you understand? Sounds like heaven, and when I it won't hurt like it does now. Three cheers for TM, hip hip......... See you all there girls. Viper.

my very odd goldfish making smacking noises. He always does it this time of night, when he wants feeding. I just wish I knew how. Ok it's not a fish but it is orange and very cute. Viper.

Hi Mandy. Don't worry if my idea was no good. I know just how you feel about people giving you sugestions and you finding fault with it. I have the same thing all the time, my son is afraid of the loo and to cut a long story short, the school he is starting (or not) in sept, have said he can't go in nappies. I get well meaning people giving advice all the time and you feel so bad when you know it won't work, I even try to sound possitive sometimes just so I don't feel bad. The thing is we know our kids and we know what will work, all we need now is a sugestion that we can feel positive about. Did the foam idea have spark of usefulness in it? Viper.

Got all his school uniform today. He tried it on and looked so sweet, it's the standared size, you know plenty of growing room (ok it's a bit big) all new kids seem to have these oversized uniforms. He looked in the mirror while I wiped a tear from my eye. Then he said, "Ok lets get it off now, I look a complete wierdo." Bless him, no room for sentimentality in our house. Viper.

Hi Mandy. I don't know about the poo thing but could you buy thick foam to put on the door, cover with plastic to ensure easy cleaning. It may lessen the noise of kicking and in the long run she may realise it's not so much fun without the noise. I think you can buy it from a market or an upholsterers. Just had an idea about the poo smearing, could you put a nappy on backwards (if she wears them) and maybe an all in one suit, backwards too so she can't get at it. It might be a bit hot right now so maybe leave it untill it's colder, by the warm weather next year she may have forgotten about it. Sorry if that's no help, I am sure someone else will be along with sugestions soon. Viper.