My Favorite Resources [Thus Far]

As promised, below are some of my favorite resources:

Public Awareness Guidelines: http://www.ndsccenter.org/resources/new-and-expectant-parents/language-guidelines/

General Down Syndrome Facts: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/

Our checklist that we're working through for Claire this month, I stopped doing the check marks but we're almost done!:

I find this list very helpful! Because we have so many different specialists, it helps to make sure that nothing has gotten overlooked. They gave us a checklist for every stage and it's nice to know what's coming up in the next few months/years as well.

Impacts on Family Life [I found these very encouraging!]:
"There is extensive evidence that mothers of young children with Down syndrome experience lower levels of stress, more extensive and satisfying networks of social support, less pessimism about their children's future, and they perceive [all of] their children to have less difficult temperaments. A major study also found that divorce rates were lower (7.6 percent) for families of children with Down syndrome as compared to 10.8 percent in the population group with non-disabled children."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3071600/

"[Siblings of a child with Down syndrome] often exhibit a level of maturity above that of their peers and tend to have more highly-developed communication and social skills. The experience and knowledge gained by having a sibling with Down syndrome also seems to make children more accepting and appreciative of differences. They tend to be more aware of the difficulties others might be going through, and often surprise parents and others with their wisdom, insight and empathy."
http://www.ndss.org/Resources/Caring-for-Your-Family/

And there are a lot of articles circulating the internet about what to say/not say to someone with a special needs child or what you can do to help. What I'm finding is that just like children with Down syndrome are all so very different, so is what we as parents find helpful [and not helpful] and I haven't been able to find one that's a good fit for how we specifically feel so here are a few of our thoughts:

Things that we do find helpful:

Words of support. We are worried about all of the medical complications that Claire is experiencing and may experience in the future and we are concerned about how she will be accepted, especially when she starts school. Letting us know that you're here for us and that we're surrounded by a network of family and friends who will come alongside us as we advocate for our baby girl means the world and is what we need the most.

Acknowledgement and encouragement. Because of Claire's special feeding needs, all of her appointments, the extra care/routines, the giant stack of paperwork and voicemails that I am trying to work through (she gets more mail and phone calls than we do!), and finding time to make sure that Anna and Levi are getting the attention they need, it is taking time for me to figure out how to get through daily tasks, chores, and errands so it's easy to feel discouraged when things aren't getting done - reminders that I'm not alone are helpful. Just like for any mom, it's nice to be reminded that feeding the kids peanut butter and jelly for every meal, having a messy house and a brown lawn, and declining invitations to participate in events/play dates is temporary and okay!

Things that have been said to us that we did not find helpful: 

"I'm Sorry." We aren't sorry, in fact, we are excited about the newest addition to our family and we would love to hear you say "Congratulations!" 

We don't want to hear about your "Down syndrome scare" [especially in front of the kids]. All anyone has to do is hold her in their arms for one minute and I feel very strongly that they'll see that she is perfect and I wouldn't change a thing.

Please don't ask us if this means we're done having kids or tell us that we "really should be done now." This implies that this is somehow our fault. We'd prefer to just know that you trust us to make the best possible decisions for our family and that whatever we decide, we have support.

And these ones I did find on another blog but related to:

"Please don't try to fix it. We have doctors and therapists and other professionals for treatment. Also, that diet/book/supplement you heard about that can cure all the problems? We’ve heard of it already. We’re on the internet while you sleep, and anyway, 26 of our Facebook friends already sent us the link." Advice isn't helpful, our heads are already spinning with way more ideas of things to try than we can handle and we've spent countless hours researching everything that we can think of.

"Stay connected. Parenting a child with special needs can be profoundly lonely. It’s also hectic and chaotic and we may not respond to you, but do it anyway. The world starts to feel very far away when life is all appointments, crisis, chaos, and praying for survival."

Thank you for taking the time to learn a little more about Claire, Down syndrome, and what we're experiencing.  I will try to find the time to share more as it comes along. We appreciate you all very much, thank you for taking the time to learn a little more about "our journey" as we learn too.