tag:blogger.com,1999:blog-648323027563656557.post5831549834575457828..comments2024-03-19T12:29:55.881+00:00Comments on Downs Side Up: A Mosquito in the RoomDowns Side Uphttp://www.blogger.com/profile/12806066168756340802noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-648323027563656557.post-75756171822360161832012-10-01T12:25:51.557+01:002012-10-01T12:25:51.557+01:00This comment has saddened and shocked, but also mo...This comment has saddened and shocked, but also motivated me. Thank you for sharing Lisa xDowns Side Uphttps://www.blogger.com/profile/12806066168756340802noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-34532721262620408042012-09-18T22:16:43.221+01:002012-09-18T22:16:43.221+01:00Hello Natty's Mom, or Mum I should say:)
Dare...Hello Natty's Mom, or Mum I should say:)<br /><br />Dare I say I have been waiting for this post? I am in your same boat, but a little farther along the journey. My son is 22, and just when i felt like the world was maybe changing - ever so slightly - for the better. These recent developments have become a huge sucker punch. I was motivated, almost a year ago exactly, to put my thoughts together. Please, please contact me and allow me to share this work with you. I'd really appreciate your eyes and ideas.<br />Maybe you reach me and take out my email from your comments?<br />Msikora@wright-print.com <br />I hope to hear from you, Mardra<br />Mardrahttp://madonnaschoolcelebration.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-54580414289234323642012-09-16T22:05:18.048+01:002012-09-16T22:05:18.048+01:00Wonderful post ( as always!) I watched a talk abo...Wonderful post ( as always!) I watched a talk about this on BBC the other day and had quite a debate with the bloke about it afterwards. There is a place in this world for everyone, no matter how many chromosones and we have decided that should we have another baby we will not test for downs syndrome. It would make no difference to whether I kept the baby and I really hate needles! Hope you and your beautiful girls are well,<br />xBex @ The Mummy Adventurehttp://themummyadventure.comnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-28942801866918967012012-09-14T14:25:17.137+01:002012-09-14T14:25:17.137+01:00great blog Hayley, one of your best in the intensi...great blog Hayley, one of your best in the intensity of the sharing....it is good to voice the dispair at all that is out there everywhere and in all (or most) of us through ignorance...<br />I'm feeling into the amazingly moving images of the athletes of the paralympics, just a few days ago on our tv screens, and, as i walk around the civilized European cities of Prague and Bratislava, am very aware how little access there is anywhere for people with mobility issues (including baby strollers) compared to the UK nowadays, and think about the participants who came from places where general awareness around what it means to have any form of disability or special need is even smaller then it is in these cities. <br />It is easy to feel slightly superior and dream the dream that "we" have moved on from the days where "witch hunting" people with special needs was the norm and accepted.<br />Unless you personally experience someone as in the moment, authentic and joyously full of life as Natty, unless you experience the gift of her honest expression of what is in the NOW, and the great teacher that she is in that for us, or can find out about her through Down side up, how would you know the other side , the reality behind the illusion of this convenient sense of superiority? <br />Actually, the fear for the "other" for the "different" is alive and well and perhaps just dressed a little better in the cloak of politically correct code of practice in the UK, as your writing point out. <br />It is the rawness of the emotion expressed so eloqently by people like yourself that is the wake up call out of our slumber state and into awareness.<br />Hayley, keep being the musquito which refuses to let us sleep.<br />Love and Blessings.xxx<br />KatinkaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-9917346800518763242012-09-14T06:01:39.635+01:002012-09-14T06:01:39.635+01:00Andi, loved your post. However I think people who ...Andi, loved your post. However I think people who are "pro-choice" but probably wouldn't choose an abortion themselves, need to be aware that abortions for "foetal abnormality" along with those for rape, incest and genuinely life threatening situations (the hard cases) are considered "necessary" not because they genuinely are, but because they soften public opinion up for the acceptance of legal abortion as a "choice". See http://prolifebelfast.blogspot.co.uk/2012/09/arguments-of-abortion-advocates-part-1.html Does anyone wonder what choice the baby would have made? If we do not value children before birth, it is not too surprising that some people do not value children's lives after birth.<br /><br />I think the abortion rate for prenatal diagnosis is so high partly because many women realise where the screening pathway heads and either don't go there or step off prior to invasive tests, which then leaves mostly those women who are definitely for abortion or are ambivalent so perhaps are more likely to be persuaded to choose abortion out of ignorance or fear of the unknown. The worry is that once a non-invasive pre-natal blood test is all that is needed for a highly accurate diagnosis, it will become routine and many more women won't have considered what to do next if the result is not reassuring. Stella McLeodhttp://www.savingdowns.comnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-85119605599057150202012-09-13T22:03:30.679+01:002012-09-13T22:03:30.679+01:00Firstly I want to say what a wonderfully written p...Firstly I want to say what a wonderfully written post! I too am completely disheartened by the newspaper article regarding the testing and aborting of babies with downs syndrome. My little Sidney (who is 14 wks) was diagnosed with downs syndrome postnatally. My risk was calculated as a 1:760 chance so was never offered further testing. Not that it would have made any difference if we had known before, we just would have been slightly more prepared for the news rather than to be told after over 24hrs of no sleep and an emergency c-section at 6am!! I like I'm sure many families are scared for what the future brings for our children, both those with and without any disability. I just hope that they will never have to experience half of the stigma that we face now surrounding it and only through more education and understanding will we achieve this. Please keep up the good work even if at times you become discouraged. Even if it only makes a difference to one person then I feel we have achieved something xxxxClairenoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-86284226025888926912012-09-13T22:00:24.995+01:002012-09-13T22:00:24.995+01:00My little girl is 8 months old now. All the medica...My little girl is 8 months old now. All the medical information that is off loaded onto you is frightening, overwhelming and extremely off putting and it is ever likely that parents make the decision to discontinue the pregnancy. All the tests we had were negative hence no requirement for an amnio. Had she have been diagnosed before she was born, it would have made no difference. I would have had her anyway. Dealing with her diagnosis was easier when she was there to hold and as she grows and her personality develops i love her more and more each day. Our lives are far richer for having her in it. I would not change things for anything now. The world we live in will always have some one that delivers prejudice, all the more reason to challenge those people. My son has a book called Harry and the bucket full of dinosaurs in which it quotes "even if you are as tiny as a tick on the tail of a green turtle you can still make a big difference.". Keep buzzing, be even more detemined and keep on making all the difference. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-7287199018818167172012-09-13T20:35:01.175+01:002012-09-13T20:35:01.175+01:00We'll be buzzing with you!We'll be buzzing with you!Mike Sullivanhttp://www.savingdowns.comnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-43733806076235420592012-09-13T18:58:39.895+01:002012-09-13T18:58:39.895+01:00We refused the risk testing with both babies becau...We refused the risk testing with both babies because it wasn't something I'd terminate for. A physical handicap that left my child with daily pain would be an issue, perhaps. I think sometimes medicine has started to meddle too far in things. <br /><br />Sorry, not being particularly eloquent. Can't imagine how livid you are about the whole situation. Well done you for keeping 'buzzing' :)Mummy Muddlehttps://www.blogger.com/profile/00480957751848146351noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-54740588976718403362012-09-13T14:28:57.660+01:002012-09-13T14:28:57.660+01:00Ive cried and cried reading this. And shook with a...Ive cried and cried reading this. And shook with anger. I so badly want to empower these parents and educate the ignorant. I had left my blog alone, caught up with work, but I am so outraged and motivated, I shall blow the dust off and join your voice. You are such a strong and motivational woman. I personally think you CAN help turn the tide. Anonymoushttps://www.blogger.com/profile/16231375777201531011noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-64211598874600733172012-09-13T14:23:39.030+01:002012-09-13T14:23:39.030+01:00This post has just made me cry and cry and shake w...This post has just made me cry and cry and shake with anger. I want SO BADLY to enpower the parents of these children and to educate the ignorant. I'd left my blog alone. Caught up with work (with childen with additional needs) but I shall.blow the dust off and resusitate to join your voice. You are a strong inspiring woman and I for one think you can help turn the tideAnonymoushttps://www.blogger.com/profile/16231375777201531011noreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-34627295520161291422012-09-13T14:22:33.003+01:002012-09-13T14:22:33.003+01:00Oh for goodness sake. You think the world has com...Oh for goodness sake. You think the world has come so far and attitudes have changed only to find that ignorance is still everywhere.<br /><br />When I was pregnant with my son, my triple test came out with a 1 in 50 'risk' of Downs Syndrome, although the doctors thought it was more like 1 in 10 as something had thrown the results out (I didn't ask them to explain). They booked me straight in for a scan and amnio the next day and when I turned up and asked for just the scan to check for any visible problems and turned the amnio down (scared of miscarriage) they were shocked and tried to talk me round again and again, actually SAYING that if the amnio showed anything they could abort the baby and "get it all over and done with". i was horrified. Unless there were serious physical disabilities that were going to make it practically impossible for my child to survive, there was no way I was going to abort, especially not for Dows - why would I? When I told them this, they replied with "Oh. Well. At least 90% of parents choose to abort a Downs baby". I was so shocked.<br /><br />As it happened, my son was born without any issues or disabilities, but I was fully prepared for a child with Downs Syndrome because of my high test results. But to me that's not the point - yes, it was a relief in that that meant he was less likely to have heart problems and so on, but I never breathed a sigh of relief because he had the right number of chromosomes - he would have been my boy and loved just as much whatever the outcome.Lisahttp://www.howtobeadomesticdisgrace.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-30905207588610243612012-09-13T14:00:45.523+01:002012-09-13T14:00:45.523+01:00I'm struggling to respond to this. I'm jus...I'm struggling to respond to this. I'm just sat here with tears pouring down my face. When I was 18 I started working with children with Down's Syndrome and instantly fell in love with all of them. They were bright, intelligent, funny, artistic, beautiful, creative, incredibly caring and sympathetic and I could easily go on. The thought of things like you have described happening in this day and age just make my heart break. <br /><br />You are doing an amazing job there as is Natty. You keep being a mosquito and just remember what a whole swarm of them can do!Mrs Chttp://www.beingmrsc.comnoreply@blogger.comtag:blogger.com,1999:blog-648323027563656557.post-88184504434239002122012-09-13T13:48:52.707+01:002012-09-13T13:48:52.707+01:00What a wonderful post - keep being a mosquito and ...What a wonderful post - keep being a mosquito and keep reminding us why we need to keep being those voices reminding people that these horrible things cannot be allowed to continue in this day and age<br /><br />Am horrified by the idea of seclusion rooms - how can that be humane?Muddling Alonghttps://www.blogger.com/profile/04702217530704657676noreply@blogger.com