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lsw146

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About lsw146

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    Greater Manchester
  1. Hi All, sorry not to have replied but it has been a whirlwind of a year! Shortly after her diagnosis my DD auditioned for dance school and has been living independently since September!!! I don't think we could have done this without the diagnosis because she started her year away with weekly counselling sessions and throughout the year had regular learning support meetings. On the whole she has managed amazingly well although her college peers tended to shun her quite a bit, she found herself a loving and understanding boyfriend who seems pretty good at helping her when meltdowns begin (sometime makes me worry more about him than her!) College has been great at trying to differentiate the curriculum for her, which is fantastic because she auditioned for the degree course and heads back there in September for another 3 years. 247 I hope things are going okay for you. Life with AS is never simple for us NT's. DD is back for the holidays and 15 year NT sister is not loving it at all. we forget what it like to tread on eggshells but we still all have open conversations about helping each other be comfortable. I popped back on because I had been filling in the disabled Students Allowance forms for her and the forum popped up ion one of my searches for information. It's nice to know we all have a place to come! <'>
  2. My DD had toileting issues especially at school because of teachers who would say to children they had to wait til break so she wouldn't ask. We arranged a hand signal which meant she could leave the classroom without having to speak and that helped. Then in senior school she refused to use the toilets because there were anti smoking/cancer posters in there and kids smoking so she thought age would get cancer. We arranged access to the disabled toilet neat her form room so she felt in control which helped. I hope you find solutions. My DD is now 16 and no longer wets but will hang on if she doesn't like the toilet environment.
  3. Currently carrying this article around in by handbag as I found it comforting and informative and having a creative DD it is good to read about his success and his perspective on Aspergers
  4. Hi just wanted to share your frustrations about CAMHS. We had the same sort of issues. DD was gifted with a markedly uneven profile of development and aspergers traits. None of that made anyone listen or help and her obvious differences became more and more apparent. We just kept getting discharged and rereferred until 10 years on they did a more in depth assessment and diagnosed Aspergers! Keep fighting for what you believe in. Our CAMHS thought a label was a bad thing but in the 5 weeks since diagnosis my DD has been more accepting of herself and our input. If course it doesn't make any if it go away but it does make finding the right tools a little easier. I can understand your frustrations over punishment when things seem beyond your DS's control and it has taken us a long time to find sanctions that were effective so I hope you can find something which will reinforce positive behaviour and discourage anything else ( hope that doesn't read as glib or judgemental sometimes what I write isn't quite what I would say in conversation) Take care
  5. Well DD had a great time at the zoo and came back as a giraffe! Such an achievement I don't think she realises how much. She did a dance lesson face paint and all and ( when she wasn't there) her dance teacher said she had her her talking to the othe girls about her diagnosis and how positive she is at the moment. Just frustrated that 5 weeks since diagnosis still no report and the locum leaves today - all they can do is apologise! I would like to know what the psychiatrist is going to say but more than that, one of the reasons for diagnosis was so a professional point of view could be given to school. Molly good luck. I hope you find what you are looking for and that your outcome is as positive as ours had been. Tally thanks for your advice we are looking into local groups and some time in her diary! People have always said she does too much but for her there is much more stress in doing too little
  6. If your GP has suggested the shoes could you not have an OT or Physio assemssment? They have access to all sorts of shoe catalogues including Piedro. It's a while since I worked with kids who wore them but they were making them increasingly trendy. http://piedrotherapy.com/
  7. Thanks so much for your reply. We have been back to CAMHS and seen a really great guy has given a diagnosis of Aspergers! We laughed and cried after we came out of the final meeting and my DD has used her diagnosis as a tool of improvement with school and friends. She is quite a social girl and does want friendships, although she is starting to understand that being a nice person doesn't mean you will be friends with everyone, but her friend groups find it as difficut to keep up with her as she does with them. She is actually going of on a day trip with some school friends tomorrow. I am very excited for her but at the seem time am full of wonder at how she will get on and whether she will feel she has to 'pass' as being fine when she is really overwhlemed. They are going to a zoo and the last time we tackled that it wasn't great but this time I think she may find it easier to say when she doesn't like/want to do something because she knows that it isn't the wrong way to think just a different way. She has told most people she knows and has had some really positive reactions with lots of her friends and most of her teachers asking how they can help her or suggesting ways in which they will adapt to make her more comfortable. For example she tyold a group of girl friends how she can't keep up with the gossip and chit chat and it makes her feel physically sick and it is because of her Aspergers. They told her they thought she was being standoffish and just didn't want to talk to them so they have said they will try not to change topics to quickly or too often and to fill in the 'missing link' of conversation if she doesn't get what's happening BUT they have also said that if she needs to go off on her own they will leave her alone for a while until she feels comfortable to come back and join in. it is amazing how such small changes in other people's expectations and understandings can make such a huge difference to her. I had spent a lot of time just before the diagnosis telling her how hard she has worked to be able to do the things she wants to do and how it is time for people to accpet her and alter their behaviours as well and the diagnosis seems, on the whole, to be making that happen. Thanks again
  8. lsw146

    Hello :)

    HI Julie and welcome. Hope you find your way through the bullying and into a happier pl;ace. I remember the beginning of high schoolfor my DD with a long sigh. Good luck
  9. Wow what a read!!!! As a mother whose 16 year DD has just recieved a diagnosis of Aspergers the idea that it is going to be removed as a seperate diagnostic confused me but at the same time when I explain her issues to people who know nothing about AS I say it is part of/a type of Autism. I also have a friend whose DS has just been diagnosed with Autism and is very different to my DD. Her DS quite clearly appears much more challenged on the communication front as his language and intereaction skills are delayed; my DS has always been very verbal but the torment and the challenge of understanding and communicating in the NT world is extremely tiring for her and on a bad day her autism is very apparent but because of her good days very confusing to those who don't know her. (Does that make sense?) She may not sit in class ticcing, being aggressive or confrontational (just examples of obvious, stereotyped behaviours not personal commentry on others) but she does silently scream and have a desperate urge to escape and saves it all up for when she gets home! Aspergers and Autism can seem so different but that's why Spectrum is a good word; all the colours of the rainbow are equal but some are easier to see at first. My DD's psychiatrist once said 'but she's not severe' 2 years later she is having suicidal thoughts because she can't keep up the pace of 'passing' so 'mild', 'moderate' and 'severe' classifactions don't really do it for me.
  10. Wish I could offer comfort other than sending my empathy. This reminds of DD refusing to build 'their' version of a bridge at the 18 month check, or starting high school and not being able to dress herself because she was in sensory overload, or hiding in a wardrobe at 15 because she was worried about the restaurant we were going to.... Nothing to worry about because she's such an intelligent girl! You are allowed to be worried and wary your her Mum! Of course I don't know you and you may be projecting but if you have worries I would say continue to share them until you feel things are okay. Take care
  11. Rubbish thing to happen. Same happened to us once and we did appeal and they waived the fine but said they would keep it in file and wouldn't let us off again so do look into your options
  12. lsw146

    Sharing

    Your right baddad, I think I tend to post when I can't get something out of my mind and that tends to meake me overeactive. They proably were being trying to be gentle with her. Also DD's picture of things can be quite skewed and negative. I don't know how much these teachers know about my DD as she only joined the school in September. CAMHS were meant to have sent them a letter before she joined and since she joined the pastoral team have requested more information but I haven't as yet built up a relationship with the school to know how it has been handled. DD had been discharged (again) without confirmation of dx and we have been struggling along until a recent crisis prompted our GP to re-refer. Just waiting for the 'black and white' now to have a meeting about it all but I will be minded to see how things are going before jumping in with suggestions. I am just so used to having to reinforce DD's needs and not getting anywhere because of no clear dx that I can't imagine it being any other way. As for the psychology teacher that is good advice. Even I have said to my DD that her dx is not an excuse to go backwards in terms of her behaviour or habits it is a way to move forwards and become more independent. She has made such progress over the years and we are very lucky that she really only needs (what we think) are small accomodations to lesson her challenges.DD certainly doesn't fit the pigeon holes when things are bad she masks everything until it all erupts at home. Thanks again
  13. lsw146

    Sharing

    My DD was away with school over the weekend and was feeling anxious so she decided to share her recent diagnosis which lead to the teachers calling her 'Asparagus girl'. I pointed out that they must have been embarrassed and uneducated about ASD . When we get our letter through and go to see her head of learning it might be a good idea to suggest some training! on a more positive a teacher who wasn't there at the weekend has been really supportive before ( encouraging her to seek help) and since her diagnosis and wants to make sure my DD has specific support structures in place to make her day less exhausting! Maybe she should be the one to share her knowledge ( she happens to be a psychology teacher with an interest in ASD)
  14. My DD is 16 and just had a diagnosis of Aspergers her sensory issues have definitely improved but come back if she is anxious or upset. Just 18 months ago she decided the wardrobe was the place to be after getting upset about where we were going to eat on holiday! Don't know how we managed/ manage things apart from time comfort and reassurance
  15. lsw146

    Now what do I do

    Yep I know...... but find it hard to switch off the watchful parent as it's such an active persona for my DD with Aspergers. I think I became more attached to rules to try and help her. Anyways posting it and reading it did make me laugh and I can't wait for her to return home telling me how AMAZING it was. It's a very different journey to her big sisters
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