I’ve met many parents of children with Down Syndrome over the past year, mostly all via the internet. This is where I’ve found most of my support. I’ve met moms through discussion groups on babycenter.com where there are new moms like me as well as many experienced parents who have been very valuable in telling me they’ve “been there, done that, there’s nothing to worry about” or “maybe you should give this a try, it worked for us”.
Another very valuable resource has been the Down Syndrome Diagnosis Network (DSDN). This organization puts together in a private Facebook group about 150 moms who have had babies with Down syndrome at around the same time. These new moms have been great support in knowing that there are others out there, somewhere, experiencing the same journey as me at the same time. There is one problem with this and that is that we are all newbies, freshmen. We chat about medical issues that we’ve heard about and are scared of, but don’t know what we’re talking about. We can pass misinformation easily and add lots of fuel to a fire of fear and worry. Baby has dry skin? Thyroid problem; not because we are entering the dry season. Baby has a rash? Maybe it’s leukemia. But I guess this kind of thing can happen anywhere on the internet. The ‘goods’ however far outweigh the ‘bads’ with this group. We share knowledge, experiences and stories. We are from all corners of the US and other countries as well. It’s eye opening to see how our experiences differ – differences in early intervention services, differences in how their baby is accepted by grandparents, differences in how the mom and child are treated at the local grocery store, differences in the knowledge of their doctors and pediatricians. I’ve personally become friends with women from as far south as Guatemala to as far north as Toronto. The Network also connects you with other moms that may live geographically near you. They introduced me to a mom, Courtney, who has a daughter who is now 2 years old. She helped me by simply sharing pictures of Lucy and just checking in during my pregnancy. I now see them periodically at local playgroups.
The group that I wrote about in the blog post ‘Our Local Community‘ also has a private Facebook group made up of parents local to Massachusetts. This has been a valuable resource for me as the experienced parents in this group have been able to provide advice on everything from applying for MassHealth assistance, to whether or not I should attend the Massachusetts Down Syndrome Congress’ annual convention, to advice on local doctors.
Thank goodness for the internet! Just with these three groups I feel like I’ve got just about everything covered.
October is Down syndrome awareness month. This month I am participating in a blog challenge for Down syndrome awareness. Click the link below to see a list of more blogs posting for Down syndrome awareness during the month of October…