Parents who have certain difficult situations and events with their children are often in a place to slowly educate others and be role models for others including the profesisonals. We are able to give a voice to  how we problem solved, what worked well, what did not work so well, lessons learned etc. If you could be a resource that educates in the NICU where these babies many times are admitted, and get involved with the parent network so that you are a resource for other moms of DS babies early on to share your hope and great advice. The work gets done 1 step at a time, and change comes frustratingly slow. It took me 10 years to get a policy changed where I work but it finally got done. If you are able to share with NICU staff and Lactation Consultants at the hospital..........maybe you could be a constant resource? Good luck and God bless
Jane Ciaramella RNC, INCLC, MS

----- Original Message -----
From: g raphael 
Date: Sunday, December 14, 2008 6:40 am
Subject: breastfeeding DS baby, educating people
To: [log in to unmask]

> i just need to vent my frustration ... i have a friend whose 
> brother and sister-in-law have just had a baby with Down 
> Syndrome... I too have a a 14 year old "baby" with DS whom I 
> breastfed for a year...(of course, knowing what i know now... i 
> would have breastfed her for much longer !!) She is highly 
> verbal, very bright, very physically fit, etc etc// I'm always 
> being told that she;s on the extreme end of the spectrum etc.. 
> and of course I believe that a lot of that has to do with her 
> being breastfed... obviously i'm educated, middle class etc and 
> that too plays a role... but even things like the fact that 
> her teeth are amazingly straight for a person with DS, her 
> tongue is strong etc etc.. the list goes on.... and all these 
> things point to benefits of breastfeeding... so it frustrates 
> the hell out of me WHY WHY WHY social workers start harping on 
> sppech therapy and early child intervention etc when baby is 
> only weeks old when the support should be
> lets get this baby on the breast and breastfeeding well... that 
> should be the appropriate early intervention in these early 
> months... NOT lets haveyou drive all over the place and visit 
> specialists etc... I've been there. I knwo what it's like... 
> the trauma, the confusion etc... BUT why are with the only ones 
> who have this information....??? why can we not tell anyone this 
> information??? why when we do are we considered lunatics and 
> fringe radicals...???? when will things change/??
> 
> i
> 
> 
> 
> 
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