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hi from a confused mum

disease

Good evening I have joined today after a very caring mum sent me the link. My 8 year old daughter was diagnosed last Monday we have been battling with her behaviour for around 2 years and only asked for help when she started picking holes in her skin earlier this year. I have had such a strong reaction to her diagnosis which I can't quite understand,  I knew there was a possibility but its hit me like a ton of bricks turning me to emotional jelly.  I know nothing about Apergers I feel lost and helpless.  

Idon't really know what I expect from posting here xxx

  • Hi all,

    It must be so tough being new to ASD, I bet its all very overwhelming as there is so much information to take in, having forums like these where you can get support from others in your position must bring you a little comfort though. I am not a parent, but I work very closely with a little 7 year old boy with autism and ADHD. I write a blog about what we do (I take him out to various places in London) and there are some tips and advice about how to take children out of the house. Click here for the link. It might not help, but I thought I would let you know about it just in case you find it useful. 

  • Chams won't help my baby girl of 7 either :( 

  • Hia we never got a follow up appointment just a handful of leaflets and a copy of their diagnosis report I think that's part of my problem once the news sunk I  had no sense of direction and felt pretty lost. Speaking to the educational psychologist and deputy head yesterday has been a fantastic help it gave me a chance to ask about the things that had been really worrying me.

  • Sporty mum said:
    Don't know what your experience is but I got a 10 minute appointment and a brown envelope with various bits of paper and away we go - come back in 3 months!

    Many areas seem to never get told to come back from what I read.  When my daughter was diagnosed, they gave me 2 leaflets (which were offered because of questions I asked that triggered them remembering) and that was it.  Never another appointment or offer of help.  I was asking for help with her anxiety from CAMHS, ignored (despite involving other agencies to push), asking for an ADHD assessment which has had to involve other agencies and have still not been confirmed anything in writing even though I made the request months ago (October) and despite verbal assurances of action.  You are lucky to get a follow-up.

  • Hi disease - I am in much the same boat.  My 10 year old got a diagnosis yesterday having been "under review" on and off from the age of 5.  I have been struggling with his behaviour since he was 3 and in many ways am not at all surprised but nevertheless feel an emotional wreck (here I am on the autism website at 5 in the morning!) 

    Don't know what your experience is but I got a 10 minute appointment and a brown envelope with various bits of paper and away we go - come back in 3 months!

     

  • Here is my thread about skin picking: http://community.autism.org.uk/discussions/health-wellbeing/health-problems/compulsive-skin-picking-autism

    I welcome any advice about what worked for your daughter as my daughter has this badly at the moment.

  • Oh I never thought of that disease is my nickname has been since I was at school my real name is Denise so they sort of rhyme strangely enough spellchecker sometimes turns Denise into disease so its also in my email address!  

    K had 8 weeks of emdr therapy for the skin picking arranged by the school and educational psychologist we are really lucky to have fantastic support from the school and gp.

  • Hi disease, you've put on a posting, and on a subject that has cropped up on another thread recently, picking at the skin. So someone should hopefully follow up.

    But also browse the threads here.... there's people discussing all aspects of autism behaviours. This will gradually help you sift through all the issues.

    The username "disease" sounds rather negative; some others posters in here may feel you are suggesting autism is a disease, which it isn't.  It is a different way of processing information which, in a world that believes only one way is right, makes those doing it differently feel outcast.

    It may help if you try to think of it as difference and the need to accommodate different perspectives.