linss Report post Posted October 10, 2005 Hi all Before i joined this forum i was confused and unsure as to whether my son had ,as. I'd read the recommended books ,been given a diagnosis although even this wasn't 100% ,read up on what it obviously wasn't.THEN i found this forum and so many of my questions have been answered from reading the day to day accounts of all of you. There's so many aspects of my sons behavior- his funny little ways - refusing to wear shoes or hiding under table that are not reffered to in the books iv'e read.So many times i sit at my lap top yelling "yes my kid does that too! "It's been such a revelation and the best help i've received to date. I remember when we received the diagnosis for my son, we were told he was a charming, bright, inquisitive boy who most likely had aspergers and If we found him "too much" would they like us to pescribe him rittalin? I couldn't believe it -they had just congratulated me on having such a lovely son and in the same breath offered him rittalin to subdue that lovely son!!! I said it wasn't an option for us at the moment but could she tell us when we would start to receive the guidance on the best ways to help and manage him. You can imagine- she just had no answer and after a moment staring at her feet told me there was nothing! Looking back i realise how naive i was and how much i've learnt about the system. I did however let her know that parents don't just want a diagnosis or medication we want to know how to help our kids, there's loads of extremely effective stategies out there that will make a huge difference to families ,thats what we should be focussing on.I was really pleased to see that the two junior doctors who were present were nodding enthusiasticaly in aggrement - so maybe there's hope for the future Hooray for forums and other parents Quote Share this post Link to post Share on other sites
Brook Report post Posted October 10, 2005 I'll second that. Brook Quote Share this post Link to post Share on other sites
Kathryn Report post Posted October 10, 2005 Agreed. Having the right information is so important in giving us the confidence to fight for our children, and the experiences of other parents enable us to feel we are not alone. K Quote Share this post Link to post Share on other sites
katkin Report post Posted October 11, 2005 Yes I agree too. Where else do I get the information I need for work but from parents! I recommend this forum to "my mums", though it still grieves me that psychologists etc are unable, in the main, to offer good practical help or access to local support groups to parents of recently diagnosed children. I went to a professional meeting a few weeks ago to finalize the diagnosis for a lad. All the chief honcho clinical psych could offer in practical terms was an NAS leaflet and a website address for JKP books!! In an ideal world, on dx I would like to see a rep of a local support group available if parents would like to see them, a comprehensive booklet with info for education, benefits and entitlements to, places to go for help (ot and others), sensible strategies that have worked for others, web sites etc. As it is; on dx parents just seem to be sent home to flounder and struggle on their own, and unless they find support from forums or happen to meet other parents to get mutual support even if it is a shoulder to cry on or rage against, they seem to feel very alone! Love kat Quote Share this post Link to post Share on other sites
dorsetmummy Report post Posted October 11, 2005 I agree, i only joined this forum yesterday and am already finding lots of help and support. At the end of the day if sophie is diagnosed with aspergers (most likely) i know there wont be a cure and all i am asking is a way to manage it as best as possible. Julie Quote Share this post Link to post Share on other sites
annie Report post Posted October 11, 2005 What this forum means to me - It's members are the experts, they may not have the letters after their names, but they understand what it is like to have a child with AS/ASD. When I am having problems, somebody has already been there, brought the t-shirt and can point me in the right direction. When I have been feeling down, there's always people to help pick me back up again. I can ask any question without being made to feel stupid for asking it. Thank you everyone. Annie <'> Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted October 11, 2005 Hear, Hear! This is a marvellous, marvellous place . It's not only given our whole family strength and confidence it's given us assertiveness to go out and get what we want from the schools, the medical profession et al. The Batcave leaves me a bit bewildered - not sure whether I should be joining in or not - are there rules? (feel it bit like an AS kid in the playground when I go in there! ) but it's such fun to read, so I'm happy . Well done to everyone - aren't forum's brilliant! Daisy Quote Share this post Link to post Share on other sites
Suze Report post Posted October 11, 2005 Some of my bestest buddies are on here and I never met one of them,don,t know what I,d do without all the advice, I,d be a lost soul , bless you all <'> . Quote Share this post Link to post Share on other sites
