Stella63

Hi Mumble Thats really great news!!! I understand the feeling you describe as thats exactly how I felt about OJ when we got his DLA. We got ours awarded last week. I was terrified we wouldn't get it again because I had forgotten to fill the form out in the summer and didn't remember til I got the letter saying they had stopped it! I thought they might think we weren't bothered and not award it again!! Stella xx

Hi Lain, My youngest has Tourettes (among other things!!) and when we were starting on our journey of discovery the CAMHS person advised me to go to my doctor and ask him to write to St Georges Hospital in London for a consultation. He honestly admitted he had no understanding of Tourettes but dutifully wrote the letter. We had to wait 6mths for an appointment but OJ was diagnosed by Prof Mary Robinson who is the worlds leading expert on Tourettes! We go back every 6mths for discussion, info and advice and they are superb!! I would totally recommend this course of action if your professionals will allow it. Hope that helps but pm me if you want any more info on Tourettes (after 5 years I have more than a little knowledge!!!) Stella xx

Hi Justine, I really feel your pain and know what its like, particularly with washing machines - i get through them annually!!! Infact I was saying to DH only the other day (and I knew it was bad luck!) 'I'm amazed that I have had this washing machine 3.5 years' - since the great flood where we lost everything downstairs! and what has happened now? It is making some really nasty, serious noises!!! Still, there should be some bargains around this time of year???!!! Stella xx

AAGGHH!!! We have reached that awful time again and I so wish I had taken a copy of the last one!! I also just realised the form was sent in the summer and I put it to one side and promptly forgot all about it until I got a letter saying OJ's allowance will stop on 2nd January!! And to make it worse they had sent me the wrong form so I can't do anything until I get the right form - oh well my Christmas cards will have to wait!! Stella xx

It is one of a series that the BBC are doing on raising public awareness about AS. The NAS were promoting it and someone here put a link about it a few weeks ago. I think theres also going to be one about learning to drive. Stella x

Well, I suppose I can see their reasoning behind it. They have decided to focus on young people who have a talent that hasn't been tapped into yet and run a series of programmes giving them the support to progress forward with it. The producer felt that because OJ already has the support network in place ie the school giving him solos and the occasional competition, he didn't quite fit their criteria. I haven't told him yet and I don't know how to tell him cos he will be devestated Has anyone else been interviewed? Stella xx

Hi, This reminds me of OJ at primary school. He had a major breakdown in yr5, was gradually integrated back in for yr6 when he started singing to his TA and other children. He was told he would get a solo in the yr6 end of year play cos he was so good and when it came to it they didn't have the faith in him and he wasn't given a solo - he was gutted and we boycotted the play. Since he started at secondary school he has been given so many solos and the school are completely behind him - have faith and look to the future! Things will change for the better!! Stella xx

Hi Kathryn, If you have the time try Ebay for very cheap chinese robes - go for a buy it now - ends quick and job done!!! When i made OJ's technicolour dream coat I spent about £6.00 on a imitation satin robe with dragons on it and then patchworked all over it. Stella x

Well done Tally!! I would have found that kind of journey terrifying and I am supposedly NT!! I have tickets booked for Rainman when it comes to Woking next month - can't wait!! Also going to see Chicago with my dad in a couple of weeks - not seen that before. Stella xx

Hi I responded to this for OJ and have just spoken to the lady (I had sent her a link to OJ's Youtube). She's coming down to meet OJ next week!!!! Excited or what!!?? Stella xx

Hi Mumble I have worn contact lenses on and off for years. I used to wear them every day for work but this has got less as my morning routine is really short due to the fact that I want maximum time in bed!! I now only wear them when I go swimming as I hate not seeing where I'm going but I have to wear really good quality goggles with them. Any sporting activity is so much easier with lenses but you will still worry if theres a chance you could get water or mud in your eyes. I also wear them if I go abroad on holiday - so I can wear sun glasses and again go swimming a lot. The daily disposable ones are the ones to go for but don't get caught up in a monthly payment thing, you just want to be able to buy 3 months supply at one time and then they will last you 6 months or a year if you're not using them every day. Stella xx

Hi Sesley, Good for you, go and find out information and try and put strategies in place while you have time!!! Unfortunately my eldest was not dx'ed ASD until he was 14 and ADHD at 15 and he has spent all those years putting up shields and being incredibly aggressive. He is not the slightest bit interested in his dx'es and continues to be behave like some kind of gangster- tormenting his younger brother, who does not believe in physical violence but does not want to be seen as weak. Life is hard and I really wish we had found some answers years ago - and I do blame the primary school for a lot of that - we were going in all the time saying things were not right and they told us for years he was just a 'naughty boy' - and he certainly is now....??? Stella xx

Hi I can certainly identify with the dancing!!! And although I don't have a formal dx, both my children do and I know now for sure my father is ASD. OJ is musical in that he can sing, quite beautifully, and will perform in front of audiences of 500 people and his tics disappear and he is completely at peace with himself. He desperately wants to learn an instrument and I have tried to find piano and guitar teachers who would be empathatic with him and teach him in the way that he needs, to no avail as yet. He picks up his guitar and strums chords that he was shown by my cousin about 4 years ago but can't seem to hear what he needs to go forward with it, and I know that so many people are self taught. So, I'm not sure that helps really but hello anyway!!! Stella xx

Hi, It's an interesting one, this thread! OJ discovered he could sing at 11 and has had numerous solos at school (even singing to Prince Edward) and has wanted to audition for various things like Oliver and Britains got Talent. I wasn't sure if he was emotionally strong enough to cope with the rejections but he continually surprises me!! I was glad he didn't get through Britains got Talent as I feel that it does take the mickey out of a lot of people and he doesn't want to do X factor when he's 14 - he knows he couldn't cope with the whole boot camp thing! But he does want to be a famous singer/West End musical type thing and if he wants it badly enough I think he will go out there and do it - he certainly has the voice and personality and loves to talk to people about his Tourettes and Aspergers!!! And he has an audition on Saturday for a singing competition and is singing at an 18th birthday party in the evening!!!! Stella xxxx

Hi Kazzen, Thanks for the insight - my online tutor has similar concerns and I am waiting to have a phone tutorial tomorrow. I know all the pupils really well but you're right, they are all different and I am wondering whether it might be more useful to do a 1-1. I do have another member of staff available who has years of experience and also knows some of the pupils really well and we would not have more than 4 or 5 in the group anyway. I do think that the mutual trust is there with the kids and the point of the questionnaire to the parents is to establish exactly how much they and their children understand about AS - I wouldn't want to just jump in and possibly cause serious anxiety. I have spoken to one parent (whose child kind of started the whole thought process for me) and she hadn't discussed his dx with him because 'he was happy living in his bubble' - but she hadn't thought ahead to when he leaves school and has to find a job etc and was really positive at the thought of me working with him. It is a really difficult and emotive issue (not sure whether I should choose something simpler!!!) but I know when OJ was dx'ed he needed to know what was making him different to others and he embraced his AS, researched on the internet as much as he needed to and although he still has huge problems at times he is an informed young person with AS. But I am also aware, through kids that I work with that awareness is not always the right option and it is getting the right mix. You're also right about trying to cover too much in 6 half hour sessions!!! I will rethink that one and maybe use what comes out of the questionnaire from the parents - having said that they are going to want some idea of the content before they agree to it!! Oh, where am I going with this?!!!! A perplexed Stella xx

Tonight is going to be the best time to see them (if it manages to stay clear!!) Anytime after sunset. Stella x

Hi, I have got to finish my Postgrad course in Aspergers and it is a work based study. I have felt very strongly for some time now that many of the AS pupils I work with have little or no awareness of their AS (for whatever reason) and I think it is so important that they develop an understanding for when they leave the education system as there is very little support out there. Also they are teenagers with all the normal problems associated with 'growing up', but many are really struggling with their social interaction etc on top of this. So, my plan is to firstly write to the parents of all dx'ed pupils in Yr8,9 and 10 to see how they feel about it and send a questionnaire to establish individual needs and issues and then plan 6 half hour sessions with the kids. I want to cover social interaction, social communication, social imagination, sensory perceptual issues in ways that they will understand - using books, internet, digital cameras/camcorders, posters, news articles, role play etc. Hopefully I can encourage the parents to interact as well, maybe via feedback from each session and then I will have to evaluate the whole thing and put it together as a portfolio. I may need to look at statistics relating to prevalence of secondary mental health problems in young adults with AS and possibly employment opportunities/ Further Education etc. Anyway thats the plan and I really do need ideas, suggestions, criticism etc from you guys!!! The time scale is to try and get letters, questionnaires and lesson plans done by the end of the summer hols and start the course 3 weeks before half term! Stella xx

Hi Trekster, We have the same problem with most episodes of Neighbours that have been recorded (on Sky+) and various other programmes. I thought it was maybe a dodgy remote control, but its obviously some Sky+ issue!! Stella x

Hi You could also look at Sunparks in Belgium. We have had loads of great holidays there (De Haan) is the nicest - cheaper than Centreparcs but same kind of thing except you are right on the coast and can get the tram up and down the Belgian coast, lots of lovely towns and lots to do! We used to go in October half term and have even paddled in the sea at that time. If you want any more info please pm me. Stella xx

Hi Mumble, I can't really think of anything other than Something Different's ideas, maybe cling film. Just wanted to say that I am thinking of you - it must be really painful, so giving you lots of these <'> <'> <'> <'> and a couple of these (not sure why the rabbits but they are so cute!!!) Stella xx

Well, a relative calmness has been over us for a while (rushes off to touch some wood!!!). Having 2 sets of the days of the week (apart from Thursday obviously!) means that OJ can reasonably easily find the correct day! Mind you, his dress sense leaves a lot to be desired - he is now wearing shorts and he pulls his socks up as far they will go and being quite stretchy they reach almost to his knees!!! I have tentatively suggested he should consider trainer socks but to no avail!!! Stella xx

Hi, We normally take a copy of the DLA or carers allowance (doesn't matter which level ) or i have a report from St Georges hospital that lists OJ's dx's and Thorpe Park, Legoland, Chessington provide a band for the person to wear - this allows you to fast track rides - normally if you have one of the special offers for theme parks ie pay for one and one goes free, these are cheaper than the reduction you would get for being disabled with carer. I know a couple of zoos have given us a really good reduction as have theatres in the West End. I think some of the cinemas will also do reductions and our council will provide a card that gets reduced prices for swimming pools and council run activities. Hope this helps Stella xx

Hi They just had a bit about it on Embarrasing Teenage Bodies tonight - didn't say too much, but it was a 15 year old girl with it on her arms - they recommended she had them frozen, like they do verrucas. Stella xx

OMG that name immediately brought back memories!!! OJ had this when he was maybe 5 or 6 (I can't really remember!). There was no way of stopping them and at times he was covered in them. I seem to think we used creams if they were itchy or sore. I was told it was viral and would last no longer than 2 years, and literally to the day they just disappeared and he will never get them again. I had no info about the immune system and this was years before he was dx'ed with anything but he had a weak immune system as a baby and suffered febrile convulsions until he was 3. If I think of anything else I will let you know. I was told it wasn't catching. Stella xx

Hi Willow, I have just signed your petition and watched your blogs and songs. I am with you all the way about raising awareness and do my bit in the school where I work (also my son's school). I will get OJ to watch your youtube and maybe comment, although he is only 13 he has a very mature attitude and awareness of his Aspergers and Tourettes - he also sings and has some songs on youtube!! Good luck Stella xx