People react differently when they are faced with new challenges. Some embrace the challenge and want to get as much information as possible to be prepared and others grieve for a longer period of time until they accept it. Unfortunately, some even ignore the situation completely. Whenever you feel ready to talk and meet other families who have experienced or are experiencing similar challenges, we will be here for you! We have been very lucky to connect with families and Facebook support groups thanks to our friends and family. We want as many people as possible in similar situations to be connected as well.
F.R.I.E.N.D.S of Frederick (Family Resource, Information & Education Network for Down Syndrome), is our local group of families. We try to get together once a month but sometimes schedules are complicated. This support group is the one that hosts the Buddy Walk® in Frederick, MD.
My favorite online support group has been Down Syndrome Diagnosis Network DSDN The group is maintained by Jen Jacob and a group of fellow wonderful rockin’ moms.
This group of “rockin’ moms” is amazing! We share every milestone that our children achieve, we ask for advice, we even have pity parties every once in a while. The support is amazing. This network has birth groups on Facebook to connect moms experiencing the same challenges and allowing them to communicate. You can follow the link below to request to be added to your birth group. From health complications, information about breastfeeding, anything really, they have a special group for you. Simply request to be add to it (Click on connect in person and fill out the form!)
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National Down Syndrome Society NDSS, Sara Hart Weir, President.
We learned of NDSS when Lili was 10 months old. Thanks to out good friend Travis, for making the introduction, we had the privilege to meet with Sara. Robbie and I have become NDSS Ambassadors and even attended our first Buddy Walk® on Capitol Hill this year!
NDSS is the primary advocacy fighting for human rights for individuals with down syndrome. They engage in the legislative process on both the State and Federal in pursuit of a “world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.” NDSS helped pass the ABLE Act, #DSWORKS, ABLE2.0 and is the organizer or the Buddy Walk®. More information about these laws and programs to follow.
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