tag:blogger.com,1999:blog-28040139.post1005849767115972219..comments2023-07-25T09:25:34.293+01:00Comments on The Voyage: The Burden I Carry?Sharon McDaidhttp://www.blogger.com/profile/13550156204691696968noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-28040139.post-91186340149796096282007-02-26T14:51:00.000+00:002007-02-26T14:51:00.000+00:00Thank you for this. I will use it in our submissio...Thank you for this. I will use it in our submission to government. <BR/><BR/>Any more -- send to The Autism Acceptance Project or estee@wolfond.com.<BR/><BR/>Thank you.Estee Klar-Wolfondhttps://www.blogger.com/profile/04075904929829751057noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-77619152855045395772007-02-26T11:53:00.000+00:002007-02-26T11:53:00.000+00:00Bree that is so sad. I wouldn't be surprised if th...Bree that is so sad. I wouldn't be surprised if that woman had been exposed to a lot of negativity over the years. What a shame for her family, and for herself.Sharon McDaidhttps://www.blogger.com/profile/13550156204691696968noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-64902592564759992112007-02-26T10:42:00.000+00:002007-02-26T10:42:00.000+00:00I have a friend who has 2 children. The youngest h...I have a friend who has 2 children. The youngest has cerebral palsy, autism and a genetic condition which I dont know the name of. Basically, at 9 years old he behaves like a 1 year old. He is absoultely adorable, lovable, happy, energetic, carefree and just a joy to be around. But his Mum doesnt seem to see it. She sounds just like that questionaire. She doesnt see the joy in her son at all. She talks all the time about the burden she carries, how unfair it all is, how sad and disappointed she is. She still seems convinced that one day he will grow up to be just like everyone else. Whilst she is so wrapped up in this self-pity, her other child fends for herself and gets little to no time or attention. It's made me sad for years seeing this. I've never been able to understand how she cant see the positives in this little boy. Maybe she has had years of negative expectations forced onto her by the medical profession. Who knows? But I know one thing for sure, she would have had something to say for everyone of those negative comments on that questionaire, which is very sad.Breehttps://www.blogger.com/profile/05054574397393074508noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-38464047786362367012007-02-26T10:12:00.000+00:002007-02-26T10:12:00.000+00:00Thanks Mike; I'd appreciate that.Hope you managed ...Thanks Mike; I'd appreciate that.<BR/>Hope you managed to get some sleep instead of living it large in a London hotel ;-)Sharon McDaidhttps://www.blogger.com/profile/13550156204691696968noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-5443402278168704732007-02-26T00:48:00.000+00:002007-02-26T00:48:00.000+00:00If I can get access to a printer tomorrow I will h...If I can get access to a printer tomorrow I will hand this post over to the NAS personally. <BR/>I am in a hotel room in London paying far too much for wi-fi access. I will be at NAS HQ tomorrow - looks at watch - I mean this morning. goodnight!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-28040139.post-70774460619771656572007-02-23T22:28:00.000+00:002007-02-23T22:28:00.000+00:00Gorgeous, photo, btw! :)I don't think you're over-...Gorgeous, photo, btw! :)<BR/><BR/>I don't think you're over-reacting at all. The negative spin really can affect how people feel about themselves, so I think you have a valid concern. I hope they respond (positively) to what you've said!The Jedi Family of Blogshttps://www.blogger.com/profile/00318743997892332537noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-64715963776303610732007-02-23T10:49:00.000+00:002007-02-23T10:49:00.000+00:00Thanks Abfh; I will send them what I've written.Th...Thanks Abfh; I will send them what I've written.<BR/><BR/>Thanks also Helen for your comment. I did think the PSI and some, or all, of the other forms, were composed some time ago by clinical psychologists.<BR/><BR/>In total there is a PSI, a Family Impact questionnaire, 30 questions about the child's temper and behaviour, a parental health questionnaire (Goldberg, '78; the only one with a reference) and an Impact of Befriending questionnaire. <BR/><BR/>I understand that these may be widely used and well standardised. I may be over-reacting (at least one person thinks so!). But I agree with Helen that this is skewed to the negative, even though you DO have the option to disagree with the negative statements.<BR/><BR/>To be quite honest; if I was to go back to when I had just learnt that my incredibly fussy, high-need toddler was actually autistic, and to soon after receive all these questionnaires; I'd have taken to my bed for a week in tears. They give an expectation that your life is over, your child is irreparably damaged, his siblings will suffer, your marriage is in jeopardy, and all <I>because of the autism</I>!Sharon McDaidhttps://www.blogger.com/profile/13550156204691696968noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-72007579278961071062007-02-22T22:33:00.000+00:002007-02-22T22:33:00.000+00:00Hi there. Hopefully I can shed a bit of light from...Hi there. Hopefully I can shed a bit of light from a psychology point of view. The PSI (if its the one I'm thinking of) is a general stress index which can be given to any parent of any child not just those with special needs (or ASD specifically). I've actually chosen not to use it in the past as it doesn't capture the unique experience of parenting a child with ASD. It is widely used in research however & is very well standardised which is possibly why they've chosen it. I'm not familiar with the other measure. I agree that these sorts of questionnaires tend to skew things to the negative and there should be an equal spread of postive & negative statements to agree of disagree with.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-28040139.post-2186257077216391382007-02-22T13:24:00.000+00:002007-02-22T13:24:00.000+00:00I hope you'll send this essay to the NAS, just as ...I hope you'll send this essay to the NAS, just as it is. It's very well written and makes your points clearly -- there's no need to compose another letter.<BR/><BR/>I'd suggest including the link to this post, so that they know their questionnaire is being discussed by bloggers. That might make them take your concerns more seriously.<BR/><BR/>Send them Estee's post too...abfhhttps://www.blogger.com/profile/01228622726560993968noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-38644682639108020002007-02-22T00:29:00.000+00:002007-02-22T00:29:00.000+00:00There is space to add comments, and one can disagr...There is space to add comments, and one can disagree with the negative statements. But the tone of the thing is so negative and potentially damaging. I'm surprised, given its link to the NAS.<BR/><BR/>I've added a question mark to my title; it did appear to be quite worrying!Sharon McDaidhttps://www.blogger.com/profile/13550156204691696968noreply@blogger.comtag:blogger.com,1999:blog-28040139.post-79526613841590699292007-02-22T00:08:00.000+00:002007-02-22T00:08:00.000+00:00oooo you had me worried for a minute there with th...oooo you had me worried for a minute there with that title!<BR/>I agree whole heartedly. Did they have an extra box at the bottom for 'comments or other'? Might have been the chance to attach an addendum of positives! Say 1 - 100 to counteract the 65.<BR/>CheersMaddyhttps://www.blogger.com/profile/05828186178060722812noreply@blogger.com