After covering a few other written resources not mentioned in a previous section of this chapter, I then turn our attention to the existing national Down syndrome support organizations.
For me personally, we received the book Babies with Down syndrome from our local support organization when Juliet was born. Some have described it as the “users-guide” to raising a child with Down syndrome. It covers the lifespan of issues that may be associated with having a child with Down syndrome: from the increased risk for a form of leukemia that happens in juveniles to an increased risk for Alzheimer’s towards the end of life.
Due to this comprehensive content, others have described it as “drinking from a firehose” when welcoming a new baby into the world and have found its content overwhelming and even depression-inducing. However, as a reference, it is an extremely useful resource; just not as a book to sit down and digest while also working through the denial, bargaining, and acceptance that often is experienced when processing a pre- or post-natal result of Down syndrome.
Another helpful resource are the books Gifts and Gifts II. The former is a collection of personal essays by mothers of children with Down syndrome describing their experience. The books were edited by Katheryn Lynn Soper, an author and mother to a child with Down syndrome. Several studies, including the American Academy of Pediatrics health guidelines for children with Down syndrome recognize that personal stories can be very helpful for parents coping with an unexpected diagnosis. As a testament to that, Soper introduces Gifts II with a compelling story of how a mom said in a dramatic public way that Gifts was the reason her child was alive. Gifts II, appropriately as a sequel, features essays from other loved ones, educators, and friends of individuals with Down syndrome.
National Parent support organizations
In addition to the up-to-date, balanced, written resources recommended above, universally, professional medical guidelines recognize the value of linking new and expectant parents with their local parent support organization.
Studies have found that through the efforts of parent support organizations, patients and practitioners alike have a more positive outlook about raising a child with Down syndrome. ACOG notes in its guidelines for prenatal testing that parent support organizations can be very helpful for expectant parents receiving a test result. The American Academy of Pediatrics mentions in its healthcare guidelines for children with Down syndrome how parents in a prenatal and postnatal setting benefit from hearing stories from fellow parents. And, studies attribute the progress that has been made for individuals with Down syndrome in school, community, and employment settings to the work performed by parent support organizations in advocating for their members with Down syndrome.
The organization that calls itself the first Down syndrome support organization is the National Association for Down Syndrome or “NADS”. At the time of its founding, there were no other national Down syndrome organizations. Despite “national” being in its name, however, NADS is based out of Chicago and primarily serves that greater area. Nevertheless, because it was first and because it has “national” in its name, NADS is often listed by governmental organizations and professional medical organizations as a national organization.[1]
About a decade after NADS was founded in the 1960’s, the National Down Syndrome Congress (NDSC) was established in the 1970’s. Based out of the greater Atlanta area, NDSC is best known for holding the only national conference for families. The conference draws around 3,000 attendees from all over the United States as well as some international attendees. It has a robust teen and adult conference-within-a-conference, devoted just for individuals with Down syndrome. Many friendships and romantic relationships have started at the teen and adult conference.
The conference is often described by staff and attendees alike as a big “family reunion.” At one conference I ran into a fellow parent from my hometown, who attended when both of our daughters were quite young. I asked why she had decided to attend on her own. She answered,
“I just think it’s cool to be at place with a bunch of people with Down syndrome.”
Within a decade of NDSC’s founding, the National Down Syndrome Society (NDSS) was established. NDSS began in New York City but also established a policy center in Washington D.C. The impetus for NDSS was a perceived need for greater advocacy in public policy and for research. Through the 1980’s and 1990’s, the NDSS held its own conference which was more focused on its mission for advocacy and research. NDSS discontinued its national conference, but then began another conference towards the end of the 2000’s: the Buddy Walk on Washington. At this event, parent support organizations from around the country come together to share best practices in running a community walk fundraiser—typically the largest fundraising event for Down syndrome organizations—and then spend a day on Capitol Hill meeting with elected representatives and their staff about the policy priorities for NDSS.
For most of its existence, NDSS’ policy center was run by Madeleine Will. Will served as undersecretary for special education in the Reagan Administration and was responsible for leading efforts to improve the Individual with Disabilities Education Act (IDEA) discussed later in this chapter in the subpart on public supports.
Around the mid-2000’s, the Down Syndrome Research and Treatment Foundation (DSRTF) was founded. Similar to the founding of NDSS, DSRTF began based on a perceived need for greater advocacy for research funding for research and treatments for Down syndrome. It was for the latter area that DSRTF was somewhat controversial within the Down syndrome community.
For many advocates, their efforts are to convince others that their child is no different than anyone else. DSRTF, however, explicitly advocates for measures that will increase cognition or off-set developmental delay associated with Down syndrome. Therefore, the notion of needing to be treated is seen by some critics as an acknowledgment that there is something “wrong” with their child that needs to be “fixed.” I, however, always found it compelling and worth investing in an organization that was attempting to nudge the average cognitive ability of individuals with Down syndrome to a range where most would be able to live fully independent lives. There are several other non-profits devoted to funding research for Down syndrome-related issues—Alzheimer’s research being a common focus given its high incidence rate. Several of these organizations joined forces in the late 2010’s and now DSRFT is the LuMind IDSC Foundation.
[1] NADS is not so un-self-aware it doesn’t appreciate its acronym is snicker inducing. To the contrary, its members lean into it, with one of its annual walk teams being named “GO NADS!”
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