DaisyProudfoot

Hiya all, Thanks for all the birthday greetings they were so lovely . Spent my birthday in hospital with a suspected mild stroke but as I was more worried about getting home to the kids I'll never know for sure cos I wouldn't let them do the brain scan. Fifth day after and the headache is finally abating - doc reckons it was stress that brought it on. Daisy

As we're fairly new to educating ourselves with AS I wanted to know whether this has worked for anyone else and how long did it last? We have always had a problem getting Martin (9-year-old AS) out to school in the morning because he is so disorganised - before we had the dx we tried all kinds of ways to get him out of the door on time but it hardly ever worked. Anyway we implemented Martin's self-management timetable this morning. He set his alarm for 6.45am, got up straight away, watched TV till 7.30am, then did all the other things on the list and was all ready to go (bar his shoes and jumper - shoes not allowed in house and too warm for jumper indoors) by 8am! No fuss, no fights or arguments, no swearing - he just got on with it . He even combed his hair because it was on the timetable and he hardly ever does that! I didn't even have to send him back to re-do his teeth which has to be the first time ever. So we rewarded him by letting him watch TV again until the appointed leaving time of 8.40am. One little paddy when the shoes got thrown against the porch wall because he was having difficulty getting them on but even that only lasted a minute or so. Ellie (his twin) also followed the timetable - although got a feeling more of a novelty factor there - and the whole family was calmer including the toddler. We got to school before the bell went and WE WEREN'T EXHAUSTED! If the timetable works and isn't just a novelty factor I may start a clocking in method so he moves a card to a new slot each time a task is completed - that way I can keep track too and ensure he isn't missing anything out. He's very honest so its unlikely he will be. See how it goes, hum de hum. Daisy

Viper, This is so awful for you both. Why is the school being so mean surely it's not that big a deal for them is it. It's not like every kid in the school is going to want to go back into nappies just because Ben is! As a cub leader I have had all kinds of disabilities come through my pack from AS and Autism to Cerebal Palsy, ADHD, etc. I had one girl who couldn't last through the night at camp without a nappy on (right up till she was 10). All we did at her bedtime was she would pop to the girl's toilets with nappy tucked under her PJs and I would sit at the entrance to the loos and divert the other girls until she was ready for bed. No fuss, no issues and we repeated the process in the morning with me disposing of the evidence discreetly. I think the school is being very very discriminating especially if your GP has spoken to them. Hang in there, Daisy

Hi, My son was 9 when he got his official AS dx although we had been concerned about autistic traits since he was about 3 years old. I first voiced my concerns about autism to his headteacher when he was 5 but there was a lot in the news at the time about autism and the MMR vaccine so she just dismissed me as jumping on the band wagon. We struggled along for a few more years and then I voiced my concerns to his form teacher (who is also SEN teacher) when he was 8 as she too was having concerns about dyspraxia. As a cub leader I had worked with a couple of kids, one with AS, the other with more severe autism, and saw a lot of similarities with my own son so I wondered if this is what Martin had. GP saw him and agreed, Peed saw him and agreed, Psychiatrist saw him and agreed - from going to the GP to full dx took just 8 months. But I knew something was wrong from about 3 years old. Good poll by the way Daisy

Thanks for everything folks. Got a meeting with Martin's SEN teacher tomorrow and hoping to speak to his paedetrician today about how we progress with his severe aggression problems - I hope your meeting goes well too Malika. Bless him - today he asked me in the playground if he could stay tomorrow after school for rugby practice (I had already said he could days ago). He was jumping up and down, flapping about, speaking dead quickly, getting panicky that I would say "no" before he had even asked the question, and I could see kids around him looking at him with that "you're weird" look on their faces and felt so sad for him. Oddly enough though he does have two or three good friends at school (one is another Aspie, the other is gentle and kind) so they mustn't all think he's crackers. I've been getting more lovey dovey hugs from his sister again so we're seeing some return to normality again on her front. The two older boys seem to be taking it all in their stride so that's OK and the toddler (well - all toddlers are self-centred anyway so no change there!) Oh - by the way thanks for the IEP description - actually it was in the jargon buster I just wasn't looking properly! Thanks again, Daisy

Isn't the Teachers Channel cool! And I'm not even a teacher. I watched "Tito's story" last night which was so heartwarming, and did you notice the eye contact? It was excellent for such a severe autistic and those poems he writes, especially the one about kind hearted people having the space to let sorrow into their lives - they were so moving I'm welling up right now. I've seen "I want my little boy back" before. A hard one for the parents that one but it worked wonders I was especially impressed by the explanation that playing with the boy (Jamie was it? Been a while since I've seen that one) had to be done at his pace or he would just get confused. His siblings adjusted so well to his change. Will try to catch the "Being different is cool" some other time as it's not the right time for me and I might tape it for Martin too. Daisy

Hi folks, I know you probably all know this analogy but I think it worked for my dad. My dad knows Martin has AS but he can't understand the meltdowns. My boy was trying to do his homework yesterday and was having the usual upsets calling himself "stupid" etc while my husband was trying to calm him down before the meltdown started. My dad asked "why does he get so upset about things?" At the time one of my other sons was cursing the computer because it had crashed and I remembered the analogy. "He's a bit like a computer," I explained. "When you give a computer too much information it can't prioritise. It gets muddled up and if you just keep clicking the mouse without giving it time to sort out its mess it crashes much to everyone's annoyance. It doesn't know its crashed it is just its way of saying 'help me out here - I can't deal with this anymore.' "That's what Martin does, he crashes, that's his meltdown - I guess it's his way of rebooting his system." My dad nodded: "Simple as that," he said. Well, we all know it's not a simple as that but I think he sees the way Martin's mind works now. Perhaps that's why Martin loves his computer so much? Daisy

Good luck Viper - they can't ignore you, it's wrong to do so Daisy

Auto-immune disorders and autism - I have Lupus (it's a form of arthritis and a connective tissue disease), one of my sons has AS, the other dyspraxia my other kids are NT (but are both left-handed!). I don't really understand what it all means Jaded but it's nice to know someone's looking into it. Daisy

Hi Viper, My Martin was exactly the same with the toilet thing when he started school. He couldn't poo especially because of his constipation issues - teacher said he could spend ages in there and nothing would come out, sometimes he would cry with the pain and there was nothing they could do for him. He came home in a different set of trousers almost every day because he wet himself yet at home he was fully toilet trained with no problems. He is nine now and can hold onto a poo for days - it's a good thing he has a high pain threshold because I don't know how he can hold something for so long. At school he still gets wrong for peeing up the wall instead of using the bowl but he doesn't have issues with other toilets anymore. Woudl it be possible to have a quiet word with one of the more understanding teachers about the nappy situation - surely they can't let Ben suffer like that. If I were you I'd be shouting about discrimination against disability Daisy

Thanks Zemanski, I know you're right - you'll see this thread in general discussion too, You know I'm worried when I'm posting it twice!!! I don't know if our school has a Learning Mentor it's only a small village school but I'll ask. I think I've blinkered myself to the fact that Martin's diagnosis could have an effect on the whole family, for some reason I've only considered his needs in the equation not anyone else's. Perhaps his sis has given me the wake-up call I needed. Daisy

Hi, I think my NT daughter is trying to tell me something. I mentioned this in the education thread but it was tied up with something to do with my AS son so may be better to do it as a stand alone problem. Please bear in mind I'm new to all this so I'm asking advice before things get out of control. I have five children (my AS son has a twin sister, and they are my third and fourth children - she's twin 1 and he's twin 2, as they say in the medical world, they are nine years old) This is the problem: The form tutor dragged me into school this morning to complain to me about NT twin sister defacing school property and writing death threats to her previous best friend on the school step. She will now go "on report" and she's getting detention and her best friend's mum is being told. She wrote "*** MUST DIE" after they had a fight (apparently they've made up again according to tekker anyway). My problem was I couldn't take it as seriously as the teacher (which was wrong I know) but teacher seems to think my NT daughter meant it, Like she's going to go in with a knife or something and do the dirty deed. I think she was just P****D off at her friend and vented her anger on the school step. Is my daughter becoming the problem child? Am I neglecting his twin because of his problems? She's always been a bit of a trouble-maker but she's obviously getting worse but then she is nine and I reckon the old pre-pubescent hormones are probably starting anyway. I will obviously discuss this incident with daughter tonight but is it common for parents to feel guilty about neglecting the emotions of their other children because they are so tied up with the ASD child? I believe one of the problems is that up until AS son's daignosis he was the naughty one and she was Golden Girl. Daisy

Thanks folks I will try all of the above. SEN teacher (who is also his form tutor) caught me today to say she wants to talk about it - woohoo - someone may be listening I hope, and wants to add it to his IEP I think she said (??? - what is that) it's not in our jargon buster. She actually said: "I'm pleased you've taken this further, I was very worried about him last year." But she said nothing to us until we mentioned it to her last year!!! Actually I don't think she would have mentioned Martin's report at all but for the fact that she dragged me into school this morning to complain to me about his NT twin sister defacing school property and writing death threats to her previous best friend on the school step. She will now go "on report" and she's getting detention. Now who's the problem child? Am I neglecting his twin because of his problems?

When Martin started school this term (year 5) I decided to buy him his own pen and associated stationery such as erasers, coloured pencils, sharpeners, ruler etc (rather than using the school stuff - we are discouraged at our primary school to use personal stationery). He has had a complete handwriting turn-around. He's writing slowly but we can actually read it, it's just one of those Berol Handwriting pens so nothing special. I think the reason being that it is his pen (I gave him several of the same) not one used by someone else and he's dead proud. Has anyone else found work has improved at school when the children use their own stuff not those passed down through the school? Just wondered whether it was just a Martin thing. Daisy

I spoke to Martin's headteacher this morning (v briefly as I was dashing) and I gave her a letter. "Have you got the psychiatrist's report on Martin's Autistic Spectrum Disorder diagnosis? He has Aspergers," I said to her. She looked at me blankly. When I first voiced my concerns that he "seemed a bit autistic" several years ago she said he seemed fine to her and didn't take it any further. It was her SEN teacher, who also happens to be his form tutor who advised me to seek medical advice. "I've just written a letter to explain it a bit," I added. "I think it will help when the report comes through." "And it's in this envelope?" she asked. "The letter yes," I said. "Not the report, that's coming from his psychiatrist. I'd like to talk it over with you when you've read the report," I said. "What else is in this envelope?" she asked (I think she suspected a letter bomb!) "Just the forms you wanting signing for after-school clubs and stuff," says me. "Oh, that's alright then," she said. And blanked me out. AAAARgh! Something tells me this may take some time - I don't think she's convinced because Martin doesn't get into too much trouble at school so he's not a problem child. How do you explain to a headteacher who never listens to her own teachers never mind the parents! Daisy

" But now i get called a f***ing bi*** daily" Oh yes, I am very familiar with that phrase - my AS son's 9, sadly he is very aggressive and not like Chelsie but if he's left to play on the computer he bothers no one at all - just gets lost in his own little world for hours on end - and we get peace. His Aspie friend at school is very quiet so it's a good job my lad isn't as his friend just lies on the ground and takes it when he's being bullied - my boy steps in and uses the fists to protect him while his friend provides a calming effect when my boy gets over-emotional. Daisy

Congrats Flutter. Scary at first but it'll be OK now. Daisy

Lucas, If you are still reading this thread have a look at an interview on Tony Attwood's site which he had with Temple Grandin. It actually took place in 1999 and seems to be linked to the publication of her autobiography but it's quite interesting as she obviously speaks from an Autistic point of view. It's in the publications and papers bit. I tried to do a link but there's too much other info there so you're probably quicker doing a search on his site. Daisy

Thanks Simon - I'm a bit thick sometimes! Daisy

Fuel prices are so daft that I had to persuade my boss to increase our fuel allowance at work as it wasn't covering basic costs ? he has done, by 5p a mile. We run two cars and I'm sure the only reason it hasn't gone over �1 a litre here in Newcastle is because there are not enough digits on the price boards! I'm fuelled up but I can't see things being as bad as last time as I don't think they're blockading the oil refineries this time. I wonder if the problems the USA is having with its fuel following the Katrina disaster will have an extra knockon effect? Daisy

Oh Dear, I'm sorry folks I think I used the wrong word didn't I, (I'm very good at using wrong words!) the word "gift" probably isn't correct but I love my son to bits and I don't want him to struggle through life. If he regards his AS as a gift it will make him feel better about himself I hope. He has already asked me if when he grows up will he be "normal", I tell him he is already "normal" he just sees the world differently and that is his gift. But yes Karen, I'm with you on the misery of meltdowns, they are heartbreaking especially when you can't get through to them and the doors are coming off the hinges but I don't want my son to consider himself to have a problem I want him to grow up with confidence, to love himself for who he is. Yes, of course he will struggle at times. I have to struggle with pain every time I have to put my arthritic feet down on the floor every morning, when I climb the stairs, when try to turn on a normal tap or when I have to hold on to my violent son to stop him hurting himself or others during a meltdown. I considered a long time ago that my arthritis is not a disability (although it is a HUGE inconvenience) so why should my son's AS hold him back from leading a "normal" life. Oops, that became a rant - I do understand that many AS adults have had awful childhoods and continue to meet challenges on a daily basis. I apologise if I seemed a bit flippant Daisy

I've just found the link to that "Geek Syndrome" article I mentioned earlier http://www.wired.com/wired/archive/9.12/aspergers_pr.html Daisy

Hi Carole, My AS son is only nine so he hasn't had to deal with the teenage and adult world yet. He's kind of closeted in a small village primary school too so everyone accepts him as he is. But I think that's the problem - it's the society we live in and the way everyone has to fit a certain social context before they're considered "normal" which irritates me. That's why I like to read the views from some of the AS adults on the site it really helps me with my own son and he's happier because I understand him more. Daisy

Good Link. Just had a read and I think he's absolutely right about autism not being a disability - more of a gift I'd say. And I must admit, I'm not AS but a table is not a worktop and I would have puzzled over that one too! Daisy

I had to laugh in church yesterday. Martin was standing with his back against the front pew with his back to the altar so I told him to "turn around and face the front". Next thing I know there's my 9-year-old son going round and round in our pew. "what are you doing?" I hissed ( as you do in church) "I am turning around and then I shall face the front," says he. Oh, and I must remember to add the word "today" after "have you brushed your teeth?" They were looking distinctly unbrushed this weekend! Daisy