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phoebe

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Posts posted by phoebe

  1. Posted · Report reply

    Hi Js mum - >:D<<'> >:D<<'> >:D<<'>

     

    My DS (now 8) worries me greatly on this front. I dont know what to do. He seems to go into destruction mode and this either manifests itself as self harm or as a direct attempt to damage property or possessions. :tearful::tearful:

     

    I really dont know what to do. I have recently asked the doc for a new referral to CAMHS and have contacted the NAS about the posibility of using a psychologist privately/paying for cognitive behaviour therapy. I have tried all that I know how to do, but :unsure: just dont know what else to try. Prevention is always better than cure, but what with the school throwing the spanner in the works ................. prevention isn't always possible is it??

     

    CAnt help much can I?? But wanted to give you a virtual hug!!

    Phoebe

  2. Posted · Report reply

    "we can no longer explain with any conviction why we persisted with his previous school for so long."

     

    Yes..... I am beginning to wonder if I will feel thatway!!

     

    AS usual - thanks everyone for your replies :notworthy::notworthy:

     

    Elun - autism specific schools??? In this area, there arent any :tearful:

     

    Onwards and upwards, I will continue to fight another day!!

  3. Posted · Report reply

    people just dont think do they??

     

    Well, intruth, they simply have no idea!

     

    At times like these, especially when you are perhaps feeling a little less up beat than normal, you start to reflect a bit and it resurfaces the post diagnosis mourning I think.

     

    Take care of you - hope you feel better tomorrow, and if you feel able to mention it to her without getting emotional, it may make her think before she trips over her big feet again!! Of course, it may not!!

  6. Posted · Report reply

    we are having continuing ongoing problems with our sons school He is year 4 and is at a primary school, where he has been since early years. There is so much history, i cant possibly tell it all here, but I have always tried to be supportive of the school and to keep communication open despite them telling me literally as well as by their lack of support and actions that basically H was just a naughty boy, bad parenting etc....down the long path to diagnosis (ASpergers - may 05) when he was 6 and 3/4, through them telling me he didn't fit the criteria for a statement - to when I finally requested a statutory assessment (after several exclusions and more controlled restraints than they can even document) to Easter this year where he was awarded a statement and accepted into the schools "resourced provision." This apparently means that he would be mostly in mainstream with some support as and when required from the professionals (I USE THIS TERM VERY LOOSELY) in the resourced provision. The statement came with specific requirements etc etc which we tightened up as much as we could.

     

    So.... the school are given the opportunity to support H and to help him, differentiate the curriculum (all the usual) and after Easter, they are aware of H's statement and the requirements etc - what do they do?????

     

    They put a Post graduate Cert ED student in to teach his class. They do not prepare him for this, nor do they ask his regular teacher (who is hands off for the student to carry out her training) to support H.

     

    These past few weeks have seen further exclusion and many meltdowns. I have walked to collect him from school and have been so worried by the state he has been in that I have felt unable to walk him home and have asked that my DH be called to collect us all. We have been handed work to complete that he has refused to do in school........A NIGHTMARE ......A young boy in crisis who is made to stand up in front of his class and apologise.

     

    So, we have recorded weekly in wrinting to the school our take on what has happened, why and how they could try to prevent it happening in future, we have asked them to contact us in the event of him being AT ALL UNSETTLED, we have offered to go in and sit with him when he has got to this point. WE have demanded a meeting for after half term, we have copied in the governors and the LEA on all the correspondence. WE have spoken to the LEA and to Parent Partnership, we need the school to understand the problems and to really want to try to help.

     

    We have our meeting with the school on the Thurs after half term - so, has anyone of you got any advice for how we can make them help our son?? I note from someone elses post that an autism outreach worker went to their school - how can you get them involved? Who else can help??

     

    Sorry for long post - any advice please

     

    Thank you

    Phoebe

  8. Posted · Report reply

    interesting thread!!

     

    I had never really thought about it, but we also have this with Ds.

     

    Reading this thread has also reminded me, I went to hear Wendy Lawson talk recently, she opened with a photo of her and her sister as children and she used the photo to explain the one track nature of her thoughts, even as a young child, she was really uncomfortable with the dress/fabric/colour/feel of her sisters dress and that was all she could think about. In the photo, she was clearly unhappy and her sister's body language reflected that she felt Wendy's discomfort as well.

    She said that since she was unable to concentrate on anything else, clearly, smiling for the camera would have been low down on her list of priorities........ maybe sensory awareness also stops spontaneous smiling for photos?????

  9. Posted · Report reply

    Ds has always been a rela early riser - something which really does not come naturally to me!!

     

    In the early years, if he slept past 5 that was a relief!!It has got slightly better of recent times m- he is now 8, but he rarely goes to sleep before 10 and more often is awake later until when I really want to be asleep. He will now go down and watch TV but hasnt mastered quietlyyet!!

     

    The thing that gets me is that he has big circles uder his eyes and really often does need a bit more sleep, but he likes to set his alarm for 6.30 (we have negotiated to 6.30 it used to be earlier) and is often ready for school by 6.45!! He does need less slepp than me and I have accepted that he needs to control his waking and I have to go with the flow!!

     

    The idea of lie ins are still a dream for me!!

     

    I sometimes wish I could sleep more deeply!! (but I think it is probably a safety mechanism that wakes me!!)

     

    Love and hugs

    Phoebe

  11. Posted · Report reply

    my Ds too has always been restricted and only has juices, water and milk. I had heard that sodium benzoate was a known trigger when he was quite young nd he has always been quite hyper - so I never allowed it.

     

    ASpartame is banned from baby foods - so that tells us something about the questionnable quality of it as an ingredient.

     

    Hope that you are able to explain to Steve and that he will see the benefits of avoiding it

    Take care of you

    Phoebe

  12. Posted · Report reply

    Flora - I totally sympathise and often share that total frustration with the world according to DS - hopefully you are feeling a little calmer and you can work on some common ground that will prevent your time being filled with a moaning and "bored" son - cos boy is that draining!

     

    Take care of you

    Phoebe

  13. Posted · Report reply

    I would suggest that as well as asd individuals needing to learn the oft quoted 'give and take', NTs also need to learn 'give and take' from an asd perspective - only if we are prepared to meet each other can shared understanding begin to develop. Only your son can know what autism is like for him. But he can't know what the social world and implicit expectations for behaviour are like for you. It's hard, but together you have to learn to work with each other's understandings and so build some common ground from which shared understandings and experiences can develop.

     

    Mumble (who hopes she hasn't upset anyone) :):unsure:

     

     

    OOOOH Mumble - good reply - can I quote you directly at my son's school?! Their view is that he is "clever and manipulative."

     

    Take care of you

    Phoebe

  15. Posted · Report reply

    cant help much with your request, but I would also be interested in the responses on this one as I am considering changing schools too.

     

    The only thing that I would say is that when I went on a few tours of mainstream secondary schools recently, there was a marked and obvious difference in their apparent attitude toiwards children with special needs.

     

    One school's response to my question of support for children with ASD without knowing or asking any questions was"if there is no funding, there is no help" another schools response was more detailed, but still a bit text bookish, whilst another school asked how the condition affected my son and almost had me in tears with her understanding and caring attitude!

     

    Hope it works out for you >:D<<'> >:D<<'>

    Phoebe

  16. Posted · Report reply

    I totally agree - I went in denial about my son, but felt that a lot of the stuff he was sayin, he could have been talking directly to me!!!

     

    My friend who came with me thinks I have got a crush on him or something and I keep quoting what he said!!

     

    I woldn't hesitate to go see him again and would recommend him to everyone.

     

    I have been to several courses and conferences as well as met with loads of so called professionals and he topped the lot.

  18. Posted · Report reply

    Hi

    Tricky question to answer without knowing anything about her level of understanding or ability...but, I went to see Tony Attwood this week and he explained how to expain it really well. I am not sure if what he said will be in his latest book (havent got mine yet), but I will try to explain it briefly.

     

    He said that when explaining to anyone , he would sit a few people round, probably family members and perhaps start everyone talking about mum. He would get a piece of paper and get everyone to think about mums strengths and weaknesses.

     

    for example

     

    good cook shouts too much

    time keeper makes us do things

    (oops struggling)! (oops struggling)!

     

    then look at dad/brother/sister

     

    then look at dx child

     

    Their list might bring out a certain list of characteristics. He said that you could then explain to the child that although their strengths and weaknesses were different to the other family members, there are other people who would share these characteristics. And that because there was a group of people who had these similar characteristics, scientists like to give this group of people a name. In the case of aspergers, this name was the name of the first person who recognised this group of characteristics.

     

    There is nothing wrong with people like this, they are just different, their strengths can carry them far (give examples of famous people............................)

     

    Well that's about as clear as mud now then?????

    Probably best look out for a book!!

     

    Incidentally though - his presentation was awesome. To listen to someone with such knowledge and insight. To hear someone talking a language that most people dont understand. He is inspiring and I wouldn't hesitate to book to hear him talk again.

     

    Hope it goes well for you

    Phoebe

  19. Posted · Report reply

    Hi everyone,

     

    I have only had the time to pop in quickly and skim read the new posts for weeks now and I have missed you all!!

     

    Since Feb half term, my husband has been home sick. This is unheard of for him and I can count on the fingers of one hand how many days he has had off sick in all the time we have been together (15 years). During this time, we have been to and from the hospital and seen 3 different consultants, but basicaly, he is no further forward. He has been on some mega pain killers which have given him some nasty side effects. There is no sign of him being able to return to work in the forseeable future.

     

    Also, we have, during this time had a meeting with the LEA and now finally received a finalised statement ( to be effective after Easter) and DS has been given a place within an EBD unit which is attached to the school which he was already attending. I am unsure about how much help he is actually getting though (He was excluded last week). I have written a report for the school (and copied the LEA) with suggestions about how the situation might have been better handled! DS is still on the rollercoaster that is his life and I am there to share it all with him!!

     

    Meantime, I dont seem to get much time to properly read your posts or indeed to reply, but I have a few minutes now and wanted to say HI and send my best wishes to all of you - especially those of you who are having a rough ride at the moment.

     

    Love and hugs Phoebe

  23. Posted · Report reply

    I have never really thought of DS as having sensory issues, but I have recently heard a bit about deep pressure stimuli.....DS head bangs and clicks fingers and does a lot of habits that could be associated with deep pressure needs - does anybody know anything about this or can you recommend any reading material for me to try to find out more?

     

    Thanks

    Phoebe

  25. Posted · Report reply

    AWWW - >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'>

    What can I say - did the original dose of anti - d's seem to help at all or would it be worth investigating another brand?

    Have you tried counselling?

    Are you getting any support?

    How are things going with the statement - think you were going back into battle last time I saw you post.

    If I can help in any way or if you feel that you want to speak to someone pm me.

    Take care hun - words are inadequate - thinking of you.

    Phoebe

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