Comments on: Parents divided on hypothetical cure for Down syndrome http://www.patriciaebauer.com/2009/11/19/parents-divided-on-hypothetical-cure-for-down-syndrome-25632/ Disability News | PatriciaEBauer.com Thu, 04 Mar 2010 18:39:25 +0000 http://wordpress.org/?v=2.9 hourly 1 By: Nancy Iannone http://www.patriciaebauer.com/2009/11/19/parents-divided-on-hypothetical-cure-for-down-syndrome-25632/comment-page-1/#comment-5069 Nancy Iannone Fri, 20 Nov 2009 14:50:16 +0000 http://www.patriciaebauer.com/?p=25632#comment-5069 When I was pregnant I accepted that I would have a child with cognitive impairment - and I still do accept that. When she was born we learned shortly therafter that she had congenital hypothyroidism and without immediate treatment she would experience irreversible and severe impact on cognition. Without hesitation we put her on medication. I know there are a lot of parents who have very concrete opinions, and others who have a sort of background discomfort - on treating cognition because there is a feeling that "acceptance" comes into play when you tinker with cognition. I understand the thoughts - and I would not wish to take away my child's uniqueness, of which her Down syndrome is a part. But I will weigh the pros and cons of a developed cognition treatment when the time comes. I view it as helping her just as I've helped her with the variety of other things Down syndrome has caused - the heart defect, foot pronation, etc. Just as I implement teaching techniques to help her, I will administer a safe pharmacuetical treatment if the pros and cons lean that way. Plus the science is so darn exciting!! It isn't just "cognitive impairment" - a blanket staetement. The science is revealing the nooks and crannies - the biological functions on a cellular level that cause learning and memory issues. Exciting stuff! When I was pregnant I accepted that I would have a child with cognitive impairment – and I still do accept that. When she was born we learned shortly therafter that she had congenital hypothyroidism and without immediate treatment she would experience irreversible and severe impact on cognition. Without hesitation we put her on medication.

I know there are a lot of parents who have very concrete opinions, and others who have a sort of background discomfort – on treating cognition because there is a feeling that “acceptance” comes into play when you tinker with cognition. I understand the thoughts – and I would not wish to take away my child’s uniqueness, of which her Down syndrome is a part. But I will weigh the pros and cons of a developed cognition treatment when the time comes. I view it as helping her just as I’ve helped her with the variety of other things Down syndrome has caused – the heart defect, foot pronation, etc. Just as I implement teaching techniques to help her, I will administer a safe pharmacuetical treatment if the pros and cons lean that way.

Plus the science is so darn exciting!! It isn’t just “cognitive impairment” – a blanket staetement. The science is revealing the nooks and crannies – the biological functions on a cellular level that cause learning and memory issues. Exciting stuff!

]]> By: Emily http://www.patriciaebauer.com/2009/11/19/parents-divided-on-hypothetical-cure-for-down-syndrome-25632/comment-page-1/#comment-5065 Emily Thu, 19 Nov 2009 22:01:20 +0000 http://www.patriciaebauer.com/?p=25632#comment-5065 Hi, I'm a student at Grinnell College taking a class on disability literature, and we've had quite a few discussions about the implications of parents wanting to remove disabilities from their children. In particular, we watched a video where deaf parents, when offered the chance to give their daughter a cochlear implant, outright refused. It introduced me to Deaf Culture and made me see a side of disability I never knew existed. That said, in relation to this article, I admire those parents that chose not to cure their children. I think their decision says a lot about those with Down syndrome (and themselves) - that this disability should not necessarily be looked at as a horrible disease, but instead should be embraced and cared for. On the other hand, I understand that there are differing degrees of Down syndrome, and for some parents, it is almost impossible to accommodate all their child's needs. Hi, I’m a student at Grinnell College taking a class on disability literature, and we’ve had quite a few discussions about the implications of parents wanting to remove disabilities from their children. In particular, we watched a video where deaf parents, when offered the chance to give their daughter a cochlear implant, outright refused. It introduced me to Deaf Culture and made me see a side of disability I never knew existed. That said, in relation to this article, I admire those parents that chose not to cure their children. I think their decision says a lot about those with Down syndrome (and themselves) – that this disability should not necessarily be looked at as a horrible disease, but instead should be embraced and cared for. On the other hand, I understand that there are differing degrees of Down syndrome, and for some parents, it is almost impossible to accommodate all their child’s needs.

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