tag:blogger.com,1999:blog-32570460.post2204661251538035787..comments2024-03-13T07:34:24.149+00:00Comments on The Age of Uncertainty: Yesterday's TodaySteerforthhttp://www.blogger.com/profile/07627936539372313828noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-32570460.post-29577057738614206192015-09-16T12:38:31.335+00:002015-09-16T12:38:31.335+00:00I can't tell you how pleased I am to hear this...I can't tell you how pleased I am to hear this. Lucillehttps://www.blogger.com/profile/14414527658216916537noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-77329219567563375322015-09-14T19:21:48.645+00:002015-09-14T19:21:48.645+00:00Lucille - It was a real battle and I'm sure th...Lucille - It was a real battle and I'm sure that many people give up, to the relief of many professionals. My wife had the advantage of being well-educated and exceptionally tenacious, but even she often felt overwhelmed by the system.The turning point wasn't just a diagnosis, but also the failure of the local education authority to accommodate our son's needs. Towards the end, they tried very hard and I can't fault the dedicated professionals we dealt with, but nothing changed. I'd already given up any hope of our son getting a GCSE and was resigned to supporting an unemployable, unqualified person for the rest of my life. <br /><br />But all my son needed was the right school and a lot of support. It's early days, but already our expectations have risen from one to six GCSEs and my son feels positive about the future for the first time in years.<br /><br />Steerforthhttps://www.blogger.com/profile/07627936539372313828noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-39122160020409305522015-09-14T19:00:49.429+00:002015-09-14T19:00:49.429+00:00How determined you had to be. I know something abo...How determined you had to be. I know something about being fobbed off (in different circumstances) by the medical profession both state and privately funded and still do not think we had the help that should have been available. It all gets even more complicated once a child becomes an adult. I am glad you got to some effective help before you were sidelined by the authorities.Lucillehttps://www.blogger.com/profile/14414527658216916537noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-50958835890813365562015-09-04T12:23:52.828+00:002015-09-04T12:23:52.828+00:00Smitonius - I think many professionals become jade...Smitonius - I think many professionals become jaded and feel as overwhelmed by the system as their patients. But it was frustrating to not be trusted. <br /><br />Lucy - Money has a lot to do with it. Once a child is diagnosed with a condition, the local authority has to find the funding for an education if mainstream schools can't provide it. Most applications for a Statement of Special Needs are turned down.<br /><br />David - Thanks. It's an interesting read - very articulate and thought provoking. It's good to have an insider's perspective on the condition.Steerforthhttps://www.blogger.com/profile/07627936539372313828noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-47768224710992954792015-09-04T10:45:17.359+00:002015-09-04T10:45:17.359+00:00I'm very sorry to hear of your struggles with ...I'm very sorry to hear of your struggles with authority, and hope things improve.<br /><br />You might like to have a look at this blog (written by one of my ex-pupils):<br />https://autistichermit.wordpress.com/2015/08/26/an-englishman-in-aspieland-or-why-silence-isnt-always-golden/David Gouldstonehttps://www.blogger.com/profile/01446150522362785974noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-33162415226450371742015-09-01T20:43:51.178+00:002015-09-01T20:43:51.178+00:00"the first thing I would do would be to stand..."the first thing I would do would be to standardise the diagnostic criteria across the various health authorities" - goodness, yes, what a brilliant idea - I wonder why they never thought of that?<br /><br />Presumably the subtext is "if we diagnose this child with autism we will have to pay"?Lucy R. Fisherhttps://www.blogger.com/profile/08632983296994349550noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-56171735100033437082015-09-01T16:58:52.851+00:002015-09-01T16:58:52.851+00:00There is nothing more irritating than Authority...There is nothing more irritating than Authority's belief that the average parents don't know anything about their child . SmitoniusAndSonatahttps://www.blogger.com/profile/11210817141287881808noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-26744029815476550782015-09-01T08:46:54.774+00:002015-09-01T08:46:54.774+00:00Kaggsy - There's a desperate need for more ear...Kaggsy - There's a desperate need for more early years training, as the decling mortality of premature babies will apparently mean more children with special needs.<br /><br />Laura - Thanks for your comment. I'm afraid that I had to delete it, as you mentioned my wife by name and she is keen to remain anonymous. Sorry.Steerforthhttps://www.blogger.com/profile/07627936539372313828noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-73195799079453988372015-08-30T18:12:10.017+00:002015-08-30T18:12:10.017+00:00The schools just aren't trained to spot these ...The schools just aren't trained to spot these things and we live in a country where those in charge won't take issues like this seriously. On a more minor note, my youngest (20) has just (*just* at the age of 20!) been diagnosed as dyslexic - why the hell wasn't it picked up while she was at school from the ages of 4-18?? So frustrating - I hope you'll get the support you need now. <br /><br />kaggsysbookishramblingsAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-32570460.post-69649207365285645352015-08-30T17:44:30.442+00:002015-08-30T17:44:30.442+00:00Zoe - I'm glad my wife didn't sound terrif...Zoe - I'm glad my wife didn't sound terrified. It's odd hearing her radio voice, as in real life my wife sounds quite different and is far more expressive. We joked about not saying 'robust' or sounding like Lady Di, which she used to in her youth. <br /><br />Re: CAHMS, the lack of understanding was a shock. We naively believed that we would be meeting experts who would be both competent and sympathetic, rather than ignorant and judgemental. Why would anyone want their child diagnosed with a mental health problem, unless they had already explored every other option? <br /><br />Lorna - That was good advice, and if the budget can't meet the needs of every individual, then it should be increased. The economy won't collapse under the strain. <br /><br />Desperate Reader - I think that many schools are just too big and whilst they offer fantastic educational opportunities, the environment is far too stressful and alienating for many children. Some schools have an autism unit, but it must be quite difficult to be separated in this way. Steerforthhttps://www.blogger.com/profile/07627936539372313828noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-43825977678119747572015-08-30T15:41:34.422+00:002015-08-30T15:41:34.422+00:00My primary school was small, 50 pupils had 3 teach...My primary school was small, 50 pupils had 3 teachers, we were divided by age, and had a collection of art, music, re, and pe teachers as well as speech therapists and other specialists on a part time basis. It wasn't a perfect school but when I was there it worked pretty well. Looking back I realise how lucky we were to be somewhere that could, and did, accommodate children with a range of needs. Better equipping primary schools would be money well spent. Desperate Readerhttps://www.blogger.com/profile/15708411387912078122noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-57437283913498234622015-08-30T14:42:59.688+00:002015-08-30T14:42:59.688+00:00My daughter is now an adult with different problem...My daughter is now an adult with different problems from your son. I learnt to be hard as nails when dealing with the school system and some of the medicos. It always hurt the contempt shown for me and the lack of apology citing budget constrants. The best advice I ever recived was from her primary school headteacher who said it was my job to be a good parent for her and not to accept the excuses given by a variety of peoople for failing her. Their excuses were not my problem.<br />Lornahttps://www.blogger.com/profile/01314427507584427965noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-22755751070465483992015-08-30T12:47:46.790+00:002015-08-30T12:47:46.790+00:00Your wife managed not to sound terrified, which wa...Your wife managed not to sound terrified, which was pretty clever. That Les Murray poem I sent you the link to about his autistic son was written years and years ago and I'd thought the whole 'refrigerator parents' idea had been completely debunked long before this. Underfunding be damned - the lack of insight, compassion, ordinary humanity you were shown by people supposed to be in a caring profession is breathtaking. Did they honestly think you enjoyed dragging your son around to appointments, that it was some kind of attention seeking behaviour? zmkchttps://www.blogger.com/profile/08972549292961948240noreply@blogger.comtag:blogger.com,1999:blog-32570460.post-89103514249272140582015-08-30T10:45:49.388+00:002015-08-30T10:45:49.388+00:00And let's not forget that John Humphries descr...And let's not forget that John Humphries described her as 'wonderful' on air. I know that's not the point, but still. Anonymoushttps://www.blogger.com/profile/07843179493508465760noreply@blogger.com