drift Report post Posted March 31, 2005 Hi I havent posted for awhile but Ive been popping in a lot. Had a really rough time the last few weeks, Sams prov. dx (AS) just sinking in. School still well and truly blinkered even though Sam just had two weeks off GP note with stress. Had a meeting with Senco and head and again I got,- well what can we do, there is NO problem at school- Senco phoned me first morning Sam was off to say it was damaging and detrimental to keep him off school Soon put her in her place I can tell you! Phoned reg paed and got him to agree to come into school next term to observe and just filled in questionaire for next assessment in the summer.... it feels like a long and lonely road. Im feeling really inadequate and How awful but Im grieving for the child I imagined I would have. Still some good news. After a year Sam has learnt to ride his bike and he is glowing. So are we. I keep picking up the phone to call NAS but dry up and dont even know what questions to ask or what to say. OOh thanks for listening! drift Quote Share this post Link to post Share on other sites
KarenT Report post Posted March 31, 2005 Hi Drift Sounds like we're in a similar boat. J (6) has a provisional dx of AS as well and had the ADOS last week so we're waiting for the outcome of that. Like you, I have so many questions but not enough space in my head to sort them all out. Would love to get some help from NAS or elsewhere but don't really know what to ask for. Duurrrhhh. Only difference is we have school on our side. It might be because this is our second assessment and the first one failed dismally, largely because of unhelpful input from the school. J's class has job-share teachers and it's definitely helped that they've both made the same observations separately. Not a peep out of the duff head though, not surprisingly. Good luck with making progress for Sam. Don't beat yourself up though, you're certainly not inadequate and there's no shame in grieving for the future you thought you had. I think most people go that route to begin with. Think of it this way - Sam could have had parents who didn't give a toss about him and just accepted without question the school's opinion that there was no problem. We'd be the same if we'd listened to the first psychiatrist who assessed J. We're doing the right thing by our kids and should be patting ourselves on the back instead of beating ourselves up. Karen x Quote Share this post Link to post Share on other sites
denise2 Report post Posted March 31, 2005 Hi Drift. I have a 10 year old son diagnosed just after his 9th birthday with Asperger's syndrome. It makes me so mad the treatment we are expected to take off of people who won't make any allowances before there is a diagnosis. We had to fight the school and doctor to just get a refferal to a paediatrician. The school told us that they had nor problem, he was just clever and a bit quirky, and that besides they had taught a child with Asperger's before and he was not the same so he couldn't have it. The g.p. told me son was a just a very bright lad with a mother who wasn't helping him by keeping insisting there was something wrong with him. After many stress related illnesses we eventually got a referral. The paediatrician diagnose him within the hour. We wer told he was very classicly Asperger's and well into the spectrum. What made me really mad( and my son very confused) was how every suddenly changed the way they treated us. I was no longer just a neurotic mother and everyone started asking how I was coping. The G.P. no longer looked at son's behaviour with disgust, everyone treated him with understaing and sympathy. But we hadn't change, just one very informed person had been able to confirm what we had believed all along that he had Asperger's. With regards to the school within a few months son's behaviour changed at school and they could see what we were talking about. A year ago we went to the parents evening and SENCO had a blank sheet of paper. instead of telling us what they were doing, they were asking us for advice and help. The same people who had told the DLA that in their opinion he did not require any extra help. With regards to school stress, my son's stress got so high with school ( even with their eventual help and understanding) he developed school phobia and was beginning to become incontinent. We withdrew him from school this year and he is now a different person. Even the G.P who still did not believe that school was the cause of his stress was surprised that he no longer needs the incontinence drugs. There is a lot of ignorance out there with regards to ASD and very often people cause a lot of damage with their lack of knowledge. Keep in there it will get better. Once he had his diagnosis we were again able to enjoy our son, we have accepted him for who he is and what he enjoys. He has a lot to give and many amazing talents, be them different from NT kids his own age. He doesn't like discos and the cinemas, but so what he's happy just the way he is. Our children are amazing little people with a very different and fascinating insight into the world. They just need a bit of acceptance and understanding. I wish you all the very best of luck Denise 2 Quote Share this post Link to post Share on other sites
