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Down syndrome User Group
Some helpful references/PDF files for Down syndrome
About This Group:

This group is for anyone and everyone who is interested in Down syndrome. Perhaps you have a child with Down syndrome, or family member. We all have questions and sometimes the best resources are each other. Hopefully this group can help if you are struggling with a diagnosis either prenatally or after birth. This group was created with the hopes of educating and helping those who want to know about Down syndrome. If however, you are struggling with a decision regarding termination, please know that the people who are here, are here because they have either chosen or accepted Down syndrome in their lives. Whatever your questions, stories or concerns hopefully we can help.

Founded by Dragon1973 on March 8, 2010
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Some helpful references/PDF files for Down syndrome<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

Hi everyone,

I thought I would post some great references for Ds that helped me, and my DH when we were learning about Ds.
I tried to limit my references to PDF's that you can save or print out.  I am not too sure if I am violating by presenting these, I hope not - but these documents are very helpful for new parents learning about Ds.  I gave a few of these documents to family members when we wanted to educate them about Ds.

http://welcometoourhouse-myjournal.blogspot.com/ (This is my personal blog - contains real day to day info & some other interesting facts)

http://www.ndsccenter.org/resources/dsBrochure.pdf

(Extremely positive and factual document)
http://www.ddsa.ca/html/factsaboutds.pdf  (Simple and factual)

http://www.nads.org/docs/DS_Facts.pdf (This document is wonderful and concise)

http://garygoddardagency.com/files/Raising-Krystal.pdf (Raising Krystal - a wonderful short story about a teen with Ds.)

Obviously if you search "Down syndrome" on the Internet, you will undoubtedly find many items, but you have to be careful, older and outdated information is out there and tends to be somewhat negative.  I have made sure that the items I put here are positive and recent.  It is important to realize the information you need and want should be within the last 5 years since so many new developments have been made.

Be careful also about reading information where Ds is described as "Mental Retardation".  This term is now considered inappropriate and outdated.  The correct terminology today is "Developmental/Cognitive Delay".   I have been working with MedHelp to change their literature - (it is outsourced) as they use the incorrect term.  Sometimes people use this term not realizing that it is wrong or very inappropriate.  The word "Retard" is hurtful and is now a painful topic for many - thus the Special Olympics are campaigning to end this word for good.  (This will be another post I am sure.)  

Also, if you check there are some really terrific sample birth announcements to welcome your new little one, that explain Ds in the actual announcement if you desire to do that.  (You have to really search well for those.)  We sent out an announcement (cute and short) explaining that Hunter had an extra chromosome - and that we wanted people to be happy not sorry.  Little things like this help to promote acceptance with Ds.  Remember one thing - we found that family and friends took our lead when it came to telling them about Hunter's Dx.  If we were upbeat and proud, so were they.  If we were sad and down, they wanted to give us sympathy.  So, we learned - be happy and proud!  After all - we are exactly that - happy and proud of Hunter.  We only ever had one person say, "I am sorry" - and to that we said, "Why? We aren't!"  It's all in the perspective.

Sandi
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