Thank you for your interest in joining the Trisomy 18 Foundation’s Parent Connect Facebook Group at www.facebook.com/groups/ExpectingTrisomy18.
Before asking to join our group, please read the following guidelines carefully.
What is the purpose of THIS Facebook Group?
The purpose of our Group is to provide a private space on Facebook for peer parents to support one another as they learn and cope emotionally with the impact of a prenatal or postnatal diagnosis of Trisomy 18 in their child’s life and their family’s life. We also have another private space for peer-parent support for those who prefer not to be sharing on the Facebook platform at www.trisomy18support.org — our online community helping parents communicating with one another since 2004. You are welcome to join this online community as well or instead of our Facebook Group.
We are a PRIVATE Facebook Group, and we screen very carefully.
When a Group is a PRIVATE group on Facebook, that means that no one outside the group members can view or post or comment on content displayed in the FB Group, even though you will see posts and comments from within the Group on your main Facebook stream when you log into Facebook. Unlike on your Facebook Personal Profile where you choose among people you know to “friend,” a group like this is connecting you with people inside the group who will start out as strangers to you and which you have no power to screen as we do as the Administrators of the Group.
We take our responsibility to screen all prospective group members VERY seriously.
We take our responsibility to moderate the posts and comments between Group members very seriously–for your protection. We do this first and foremost because parents who are newly-diagnosed are understandably very vulnerable, scared and naturally distraught. Our intention is to prevent people joining with fake FB profiles who have stolen images from real Trisomy 18 families (yes it happens!). We also attempt to stop people entering the group with the intention to market Personal Fan Pages or GoFundMe campaigns. We will remove group members whose only interest seems to work behind the scenes in private messages to group members to”mine” FB profiles/names to build their own followers lists for Instagram, Twitter, and other social media platforms. If we ask you to verify your identity by sharing a picture of your driver’s license, please do not take offense. It is for everyone’s protection in the Group.
Only impacted parents — mothers and fathers expecting or caring for a child or grieving for a lost child with a Trisomy 18 diagnosis are eligible for membership in this group.
We know from our experience over many years that parents need a zone of privacy with other parents to explore the whole range of information and emotions triggered by this devastating diagnosis — and the often heart-breaking decision-making associated with learning how Trisomy 18 has impacted their child.
The Foundation supports ALL parents impacted by a Trisomy 18 diagnosis — either prenatally or after birth.
That means we (the Trisomy 18 Foundation) have no agenda to promote a set of “better” or more “moral” medical decisions that we think you “should” make before or after birth. All Trisomy 18-based decisions are complex, challenging and heart-breaking decisions with uncertain outcomes. We know that every child and every pregnancy is unique. We know that the same decisions and surgeries that improved one child’s life-threatening symptoms may also lead to another child’s death. We know that only you as a parent know the whole story of how the Trisomy 18 condition is impacting your child in close partnership with your medical providers. We know that only your family must live with these decisions. We trust your wisdom as a parent to make the best decisions you can out of love for your child and your family. We know that all parents make the best decisions they can to the best of their ability and understanding at the time. As a community, in this group, we provide a space for parents to give and receive support from other parents — all of whom are coping with the challenges faced after having received a Trisomy 18 diagnosis for a much-wanted and loved child.
We are not a Pro-life or a Pro-Choice Group.
Please be aware that because the Trisomy 18 condition affects all families regardless of race, ethnicity, economic status or family structure, we respect and protect the diversity of the entire population of Trisomy 18-impacted families. We are not a Pro-Life or religious organization. We do not encourage or discourage abortion either. This Group is not the place to promote pro-life or pro-choice views. These views are ultimately political positions to either restrict or protect the legal rights of other citizens when pregnant to access to the whole range of medical options available to them during their pregnancies.
As a legally-bound and regulated Non-profit organization since 2003, and we respect current law. The law allows women to end a pregnancy “for medical reasons” in the United States where we are incorporated. Trisomy 18 as a condition does not discriminate — it can impact ANY parent and is as diverse as the American population as a whole with many different sets of beliefs and religious traditions and political beliefs. Any member using religious or political beliefs to shame or stigmatize or gossip about the medical choices of other members will have their post deleted. Repeated violations of the individual moderators’ decisions in or outside the group will lead to permanent removal from the group.
Your Personal Intentions and Motivations to Join Matter!
What is your intention or motivations in wanting to join THIS Group? In promoting a safe place for dialogue and peer support among parents, we ask that you not join this group unless you are seeking personal assistance with your Trisomy 18 journey with your child. This group is not the place to promote your blog posts or FB personal pages, images, books, fundraising appeals, events, personal creative projects or products to attract followers, fans, donors, attendees or purchases — no matter how meritorious.
This guideline refers to posted content and comments. It also applies to private messages to group members you otherwise would not have access to circumvent this rule. We expect Group Members to report any violations of this rule to the Moderators for action.
This rule applies to us too — The Trisomy 18 Foundation. We do not use the Group space to promote our content and campaigns except under exceptional circumstances. We post this type of content on our Facebook Page where we reach out to over 50,000 followers. The FB group is exclusively for peer-support. While we recognize that many have created valuable content for Trisomy 18-impacted parents, these types of outside link posts have proven to suppress participation instead of encouraging open dialogue between members. It encourages members to leave the group to read. If they comment outside the group, then the commentary is not available in the group for the benefit of other parents in the group now and in the future.
Over time, we have seen that this trend unchecked makes the group less useful for parents and undermines the vitality of the group and leads to less participation and sharing from new parents who need this FB Group most of all — now and in the future. It’s the difference between talking AT parents versus parents talking WITH each other. Posting AT the group with just a link post can feel to other members like you are asking for attention for your point-of-view and child’s story but are not equally interested in them and their child. When in question, consider the point-of-view of a newly-diagnosed parent who has just joined the group and only sees links to outside blogs and no commenting. They wonder, is this group just to share personal blogs in other locations on the web.
You can post your thoughts in the group space AND then share those same thoughts on your blog site or personal page to reach a different audience, but it is not appropriate to just share a link to your blog or personal page’s post or image. If your intention is to encourage commentary and dialogue within the group as a fellow parent, this is the Group for you. Other parents want to see that you are interested in what they are sharing about their child and family too. That is what builds healthy, supportive relationships in the group and keeps the vitality of the group going for future newly-diagnosed families who will read here long after you are active.
We are interested in your Voices and Projects as Bloggers and Creators.
We love many parent bloggers doing great, insightful writing and regularly cross-promote blog and FB post and Twitter content from parent/writers with our followers. We want to bring the voices of parents in first person pieces to those who come to the Foundation to read our shared content. If you would like to make us aware of your blog, book, or other worthy projects that we may be of interest to our audience of parents and families, health professionals or scientists, please send us a message on our website’s Contact Us form or email us at firstname.lastname@example.org. We are interested. The Group is just not the place to “promote” your content without our explicit permission in advance.