Mandapanda

Hi If he wants ordinary laces, I guess he'll have to have ordinary laces. In my personal experience stubbornness is an inherent trait of asd! It might be hard work at the moment but this sort of thing may get easier as he gets older.

Hi I think it can be an 'excuse' sometimes, but it can also be a very good reason - difficult for us to judge really. My eldest has never used it as an excuse, and refuses to use it as a reason - which can be very frustrating! My youngest, I believe, is now using it very much as an excuse - which is extremely annoying.

Hi Jeanne It must be very worrying and exhausting. Excellent advice from Sally (as usual ). Look after yourself whilst this is ongoing, you need to have a break from thinking about it from time to time <'>

Hi My boys are so lazy they only ever wanted velcro! I wonder if he's trying to get both sides exactly the same length and then the loops of the bows exactly the same? Or maybe trying to get them to 'feel' right. These might be useful - I think they come in different colours too: http://www.shoestringuk.co.uk/detail_laces.php?c=14&cn=black+coil&pt=single

Hi Aw is now home permanently. He has been diagnosed as strongly ASD and we are awaiting the full report to come through. i'm finding it quite difficult, adjusting to treating him as more ASD than his brother, as he had always seemed more 'normal' even though he's always had his 'funny ways' (no offence or criticism meant in using these terms). He used to be a rowdy, boisterous, lively Taz (at home anyway). He is incredibly intelligent, yet keeps asking "how long will dinner be" etc. It's very annoying! He's agreed to go to the dump with his dad to dispose of some old furniture, but wouldn't help his dad build a new little cupboard. When I asked him why he said it was "probably" because he'd agreed to do other things. When in hospital he said it would be easier to try new foods at home, but of course now he's here he isn't trying any and consequently we are wasting a lot of food. He even said to the nurse yesterday that he wants to try more different foods The nurse mentioned archery, which Aw agreed to do when in the CPA. Yesterday Aw said he would do it, but only because he had to, and that he had only said he "might" do it. So lots of backtracking going on! I suppose I might be clearer on things when the full report comes through but I'm going to need all the patience I (don't ) have.

I do this, and as far as I'm aware I do not have AS

Hi all We visited a local college yesterday and they told me about the S139A - Statement of Moving On. My youngest has never had a statement (though he definitely should have had one), and has now not attended school for 4-5 years. When I asked about special transport for college they said it had been tightened up this year and they had to have a statement. Then they said about the S139A, and if we got that it would entitle him to the transport (I don't think he will cope with buses at all). http://www.legislation.gov.uk/ukpga/2008/25/section/80 There is even a section at the bottom about home schooled young people.

Hi Lucas I'm not sure what you mean by this. This is on their website: http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx I can't see anything where they say they don't agree with it.

Hi Jeanne Both my boys have been like that with their clothes. If they get ripped, or are getting worn out, they expect me to be able to mend them so they are like new again - my sewing isn't that good!! It's all very stressful, isn't it? I think sometime we just have to accept that we cannot solve all of their problems (not easy I know).

Hi Paula I totally agree, and I do feel for you <'>

Hi Thanks for the link. Very interesting. I hadn't heard of this before.

Hi Jeanne I get a headache and feel jittery when a storm is coming, so must sense it in some way.

Hi all Well things are much calmer here. At Family Therapy Aw asked to speak to us alone first. He said having the rigid timetable made him miserable. He knows he has to do certain things and is prepared to do them but without being given a specific time for them. We agreed to be more flexible with the timetable. He was also sad because he knows he will never see a boy he'd got friendly with who has now been discharged. He came home Weds eve and stayed all day yesterday as it was his 16th birthday. Consultant Psych wasn't thrilled about me keeping him off 'school' but the head tutor agreed. We didn't actually have a timetable but it was really quite good. He didn't even want to spend all the time on the computer. He ate with us, watched DVDs and programmes with us, went for walks with me. We even went to the supermarket on the way home Weds eve to get a birthday cake - it's years since he's been in there! He chose a chocolate cake - he's only been eating completely plain madeira sponge for the past two years. I got some balloons and some number candles. The candles were a mistake - they had glitter on which went on the cake. He moaned about it, took the candles off and asked if they were edible. At one time he wouldn't have eaten any of the cake at all, but he still had some just disposing of the bits that had glitter on. It was lovely to see him have proper cake on his birthday. He seems like a great weight has been lifted off his shoulders, he seems happier and more confident. I am beginning to hope he's not just doing things to get out of hospital, but because he's actually got used to doing things and is starting to enjoy them (though he would NEVER admit that!). They did archery with the hospital school this week and he came second in the competition (he idolises Legolas He was beaten by a girl and took some jokes from Dad about that in good spirit - Aw said she had a 'lucky shot' which doubled her score - and laughed when I pointed out he doesn't believe in luck Next weekend we're going up to the Royal Society (Science) for their Summer Exhibition, it better be really good, they better not let him down! He's going to be home every night in the week from now on - two weeks to go before discharge. Let's hope things continue like this. I can't thank you all enough for your support. It has really helped. .

Hi Paula I think what the others are saying is right. My eldest went through a phase of trying to touch my boobs (when stroking the cat on my lap, or hugging me). I just kept gently guiding his hand away without saying anything and it did pass. Your son loves you and trusts you and feels safe with you. It is inappropriate, but it's understandable he would direct these emotions towards you initially. It might be difficult for him to cope with these feelings and you've always done your best to help him. In this situation it's a case of making it clear he can't do this but without making him feel disgusting (I appreciate how hard that might be!). This will pass, try not to worry unnecessarily about it, look at any programme about the Romans and it was perfectly normal for them! He just needs guiding through this.

Hi everyone I went to the docs later that day as I didn't want to lose it completely. Thanks so much for all your posts. You've all given me a lot to think about. LancsLad: I do remember you talking about the 'games' and their stages, I have been looking out for them - though we haven't yet got past the "i'm fine, there's nothing wrong with me, see I can do whatever the hospital ask of me" one yet! Jeanne: good idea about videoing him, but we'd have to hide the camera really well so 'hawkeye' wouldn't spot it! Sally: CAMHS have asked the hospital to refer us to Soc Serv as they say they don't get any response from them Darkshine: You've made some very very good points about handing the responsibility back. I do feel the stay in hospital is going to help me do this, as I've seen that he is strong enough to cope with everything that's happened so far. We had a meeting at the hospital Friday pm, and his nurse came up with a rigid timetable for the weekend. This has worked pretty well. He has to spend certain amounts of time in 'communal areas', and going out for activities, walks etc. He has set 'room time' when he can be in his room, on the PC or reading or whatever. We went tenpin bowling yesterday. Aw gave up about 2 turns before the end of the first game and wanted us to stop and all go home, which was frustrating. However he sat and waited whilst we finished the first game and while we had a second game. He then agreed to have something to eat (I think he knew he had to salvage the situation somehow). He had chicken nuggets and chips. He then suggested playing Dad at pool "even though I don't want to play pool". It was amazing watching him. He's been playing another lad in hospital, and it was brilliant watching him being focussed and purposeful. And he won, just! Today we went to the Living Rainforest and, despite afterwards saying it was boring, he was going around pointing out the creatures to Dad and appearing to show interest in things. Obviously he's doing all this because he's been told they may review the discharge plan, however Dad said "We want you to continue doing this when you come home properly" and he said "I suppose I HAVE to", which sounds promising. We talked about having one of his (old) friends round. He was uncertain, but Mj then suggested that he (Mj) invite one of them round so Aw can see them again without the pressure being on him to spend time with them, which I think is a really good idea. One of them is currently going to the college Aw may go to, so it would be good for him to know somebody there. The hospital have explained that he didn't want to do things to start with there, but with encouragement and firmness, he has started to actually enjoy some of it. He was playing Jenga with a girl on Friday So it is probably partly habit the way he is at home and we need to break that habit at home. I know we should realise these things, but we've struggled for so long and been in such a state we need them spelled out to us. Thanks so much for all your support.

Hi It's 4 in the morning and I can't stop crying. When I see my son at hospital he talks really nicely about things. He says all the right things and I think "it's going to be OK", but when he's home he's just flatly refusing to do things again. He wouldn't go for a walk last night, and he wanted to eat dinner on his own. His new phrase is "it's not mental illness to want to ...." He's agreed to go and look at 2 colleges, but I don't think there's any chance he will, and I don't believe there's any chance he will actually be a student there. The hospital don't see any of the anxiety because the greater anxiety is being in hospital so he's doing whatever is necessary to get out. They say he couldn't do that, but he is! My husband is stressed about his job. He really hates being on call, he would never have taken a job on call but has been forced into doing it. He's off with a bad back at the moment, but I can see he really does not want to go back. My hours are changing at work so I won't have one free day int he week and will mostly be working without any other admin in the building so I think it's going to be quite lonely and hard work. Our eldest has just finished college and is in a really good mood. It's all going to get spoilt by us getting depressed about Aw's behaviour, or major arguments as we 'try' to get him to do things he doesn't want to do. I expressed my concerns at the CPA but they just think I'm worrying because of how he was before. They don't see the real him so think he's 'snapped out of it'. I just don't know what to do.

Hi A-S Warrior You're not likely to get over a 2 year relationship in just a few months. It's very very hard to go against your parents when you come from that sort of culture. Playing devil's advocate, I'd say you sound quite intense, so perhaps going away made her realise that she needed to finish things and she chose her words carefully to let you down gently, not realising she was leaving you with the thought that she really wanted to be with you which would make it harder for you. Either way, there's no going back. Give yourself time.

Hi Aw is NOT on a Section 3. They made a mistake - didn't write the name of the hospital in one place, and didn't notice before 14 days were up, so the Section is invalid. However, he has agreed to stay informally, as they've told him that if he comes home and won't go back they'll just section him again. Hopefully he will go back ok Tuesday! We all think it's the message not the messenger he really has a problem with, although he says even if a different nurse would still be saying the same things he still wants a different nurse. We are all finding it great having a break from him, sad as that may sound.

Hi Jade I'm absolutely sure I would feel the same apprehension and concern as you if I was in your position. However, looking at the website as objectively as I can, I think it actually looks very useful. As far as I can see it is a way of looking at what emotions are leading up to a behaviour, which I think is really good, as too often schools just focus on any bad behaviour itself and not what is leading up to/causing it. I suspect the problems could possibly come from their interpretation of the results and what could/should be done about it. Obviously you will need to be fully informed about the test and the results and what plan they come up with - an can then raise objections if necessary. They're bound to make you feel like it's your fault, isn't that what they always do to us?! http://www.thriveftc.com/index.cfm?page=detail&i=72

Hi all Aw is now on a Section 3, which is up to 6 months. They are still assessing him at the moment. He has become quite hostile about his nurse (probably a natural progression in the process). We have a CPA on 7 June. I've told them he's requesting a different nurse, and I've asked them to make sure they look into it. If they end up saying no, perhaps they might see a little more of the real Aw He did put some weight on last week 0.9kg, so that was good. His arms don't look quite so scrawny. He definitely seems to be eating better at weekends. We now have 2-3 choices for each of breakfast, dinner and tea. He was in a pretty bad mood this weekend, but it's only to be expected sometimes. He even swore at his dad which he's never done before!

Hi A-S warrior Your positivity and enthusiasm is wonderful and refreshing, you just get a bit carried away with it sometimes. Some people find it very difficult at times having AS. Many parents find it extremely difficult their kids having AS. We can't always see anything positive in what is happening. You can interpret things in a very positive way, but unfortunately we're often too exhausted to feel it in any positive way. As I've said to another forum member, you don't have to agree with what I say, but I do not have to agree with what you say either! If we all accept that we shouldn't get the arguments that sometimes arise on here.

Hi Matthew This is a brilliant project, as long as it does not put too much pressure on those taking part. The difficulty with performing live is you have to do it when you're supposed to, not when you feel able to, or in your own time. Good luck, I hope everyone really enjoys it.

Hi I don't know that my eldest is hyperlexic, but he has always been brilliant with shapes, which letters are after all. He's always loved words and word humour. His Grandma used to call him names like rapscallion and flibbertigibbet and he would laugh his head off! He struggled with English at school, it's the writing down he struggles with. He's now 18, learning Japanese, and going on to University to study English Language and Linguistics and Russian! Being good with words and language can only be good because it means you can read and learn about anything you want to.

Hello Graham Welcome and I look forward to hearing your views and opinions on situations my sons experience in the future! It's so useful getting the point of view of someone with AS when trying to work out how to help my sons.

Hi Mumble Happy Belated Birthday! I hope you got your cake (with Happy Birthday on like Tally said ). Mine was on the 10th. I have 2 sisters and 6 nieces and nephews and my mum (who is 90 this year). The only one who ever remembers is my mum! One of my sisters reckons my mum's been senile for years, but clearly not! Even my husband's aunt who's in her 80s remembers. I don't even get a text from the rest of my family I'm 50 next year and it's still upsetting. However I have 2 really good friends who remembered and even got me a little gift - friends are the family we choose for ourselves