If you were a single mom during your pregnancy or after your baby with Down syndrome was born, we would love to hear from you here on this blog post. Some of our moms are single moms when they find out their babies have Down syndrome. A few part ways with their partners after a diagnosis. While this may not happen often, those moms would really benefit from hearing from experienced single moms. Will you share your story here?
Some expectant moms wait to reach out to local groups for a variety of reasons. Others reach out right away. Are you thinking about reaching out? Consider these benefits to reaching out locally while you are pregnant:
1. You can find out if your group has a prenatal outreach, new parent support, or first call program.
2. You may find a mentor who can help you one on one.
3. You may be able to receive free books or other information.
4. You will have access to the lending library.
5. You may be able to have a discussion with other local parents with a prenatal diagnosis, about feelings, delivery plans, and experiences after delivery at your hospital.
6. You may be able to get your extended family members involved in fundraising social events (like Buddy Walks, or dinners) which will give them a feeling of helping while you take baby steps into the community.
7. You can learn about local medical services and providers.
8. You can learn about local Early Intervention service providers, including family cost share and which therapists are the best.
9. You may meet someone with a baby – someone whose child may be best friends with your child. This may also help you see the immediate future.
10. At group social events your typical children can play with kids with Down syndrome.
11. Learn about programs and opportunities in your area.
12. Find a local family that has faced the medical issue with which your baby has been prenatally diagnosed.
13. Become more confident in your ability to successfully parent your child with Down syndrome.
14. Make lifelong friends who you will know and trust in 18 years to come up with innovative housing and social activities for your child.
15. Have fun! We have lots of fun at social events – it may take your mind off of this pregnancy stress and help you envision a happy future.
Some parents are uncomfortable about attending local group functions when their child is not yet born. Others embrace the chance to meet other parents. Groups vary in the supports they have available for prenatally diagnosed parents. Have you reached out to your local group? What was your experience? Have you attended functions, or do you prefer one-on-one support? If your child has a specific health issue, have you been able to connect with parents who experienced the same issues?
We would like to hear from both experienced and expecting parents about the wonderful support they have received from friends, family, and health care professionals. We spend a great deal of time helping parents cope with negative or stinging comments, mainly because we do not have built-in coping mechanisms for those unexpected events. Sometimes when in the stress of pregnancy post-diagnosis, a negative comment can send us reeling, and may actually drown out the many positive comments we hear.
However, there are extraordinary people out there. People who rise to the occasion and give a piece of themselves to give genuine, loving support. Focusing on their words and their actions, their support can help build our confidence and reinforce the knowledge that the world is a welcoming place for our children.
Sometimes that support comes from friends and loved ones who dive in to learn more about Down syndrome and the available resources so that they understand our children a little better and how to help them achieve their potential. Other times that support comes in the form of friends visiting the hospital and bringing blankets, stuffed animals, and candy to the Newborn Intensive Care Unit. That support can also include comments that welcome our children into the world, like the nurse who says “Congratulations! You’re baby is precious,” or comments that shape our understanding about disability, like a friend who shares, “My cousin has Down syndrome, and she’s an important part of our family. We love her.”
Please share in our comments the words, actions, or attitudes of those around you who gave the best of themselves and in turn helped you cope or look forward to a bright future. If you are on Facebook, you might also want to post your comment to your Facebook status and link to this blog post. Or post a thank you (sample linked below) in your Facebook status.
Booklet for Friends and Relatives: HERE
Sample thank you letter to the person you appreciate: HERE
(Note: We recognize that some things that bring comfort to some people may not help others because of the diversity of the personalities and beliefs of our expectant parents. For general guidelines, see our Relatives booklet linked above. Supporters should tailor their comments and support to match what they know about the personalities of the expectant parents.)
Every day at Down Syndrome Pregnancy, we provide expectant parents layers of support through our discussion board, private contact, and blog posts.
DSP “graduate” Megan Landmeier says, “When I got the news that my baby girl had Down syndrome, my world turned upside down. Downsyndromepregnancy.org launched within weeks of getting Ellie’s diagnosis. I was able to share the website and book with family members and close friends; connect with other women; learn more about Down syndrome; and find hope from experienced parents who talked me through both of my daughter’s major surgeries. I cannot fathom how difficult my pregnancy would have been without the voices of other parents providing hope.
I now have a happy, healthy eight month old daughter. When she arrived, we were able to celebrate because we were prepared for her extra chromosome with community, information, and resources.”
Every day, we help women like Megan navigate the unfamiliar territory of pregnancy post-diagnosis. To help us with our work, join our end-of-year fundraising drive at our First Giving page.
What resources are there for dads? How is the prenatal experience different for them (beyond the biology)?
Competitive runner and FBI agent Heath White describes how he and his wife struggled with a prenatal diagnosis of Down syndrome and then how his life changed after Paisley was born. They have run a symbolic 321 miles together, and Heath says, “I’m always gonna be there to make sure she gets to the finish line.”
Like Heath, I remember being afraid of someone teasing my son and being worried about raising him for the rest of my life. Then I remember coming to the realization, like Heath, that my son was becoming so independent I might not get to raise him for the rest of my life. Let us know, how much of their experience sounds familiar to you? What’s different about your story? Please also share any other stories or blogs you like about dads.
Another video from a father:
Expectant parents, this video treasure has been shared throughout the on-line Down syndrome community. A father speaks from the heart about those early feelings connected with hearing the news, and the progression of perspective, feelings, and knowledge. It takes only a few moments, but we think it will help you see a glimpse of the future:
(Please note that in the video the stat on divorce seems to be inadvertantly misquoted. Research does show that couples with a child with Down syndrome divorce at a lower rate than couples with typical children, but not as low as noted in the video.)
There is also a national group specifically for dads called (“Dads Appreciating Down Syndrome.”.), and about 55 local groups across the country have a DADS chapter that hosts monthly meetings to provide “safe forum for sharing, bragging, learning and growing with other fathers who truly understand.” Read more about the chapter meetings here.
Below are also some blogs by dads to give some insight into their perspective:
Eric blogs about life with twins with Down syndrome
Dad Bernard Marrocco writes in Canada’s Globe and Mail of the beautiful journey of life with his daughter Clare who has Down syndrome. He has experienced the uncertainty and fear of receiving a diagnosis, acknowledges the difficulties, and reflects on the fundamental joy of parenting Clare. It is well worth the read, especially for our expectant dads.
Please post any additional resources for our expectant dads in the comments. Expectant dads or experienced dads, please share your questions, concerns, or thoughts.
Group leaders, please share with our expectant parents some information about your group, and contact information so that our expectant moms know whom to contact. What kind of supports or resources do you have for expectant parents? Do you have any events coming up? Let’s have a shout out from our favorite groups! Let our expectant parents know they are a part of our community, not just in cyberspace but in real life too.
In the five years we have worked with expectant parents, we have seen many similarities in the experiences of those in post-diagnosis pregnancy. Reading of these experiences allows expectant parents to know they are not alone. We have been where you are. We understand. However, this population is very diverse in terms of life experiences, beliefs, personalities, and circumstances. Expectant parents do not all react the same way, nor do they all need the same form of support.
There are many avenues of support available, many ways of gaining confidence, many ways to be comforted and empowered. Which best fit your personality? Which best met your needs? Local groups, therapy, on-line support? Books on Down syndrome, meeting families, prayer? Scientific research, personal stories, a specific resource?
Please share with us the combination of supports that best worked for you.
Congratulations on your pregnancy, and welcome to our community. If you have just received a confirmed or suspected diagnosis, you may be feeling very afraid, alone, and overwhelmed. We offer information that can help.
1. A free downloadable Down syndrome pregnancy book. (Suggested $10 donation.) Buy the printed version HERE (Woodbine House).
2. A blog on our home page. The current post is always on the front page, and you can also search by categories.
3. Open dialogue on Baby Center’s Down syndrome pregnancy board. This is a public board not owned by us, but our own Nancy, Missy, and Amy are there on a daily basis to answer questions, provide comfort, and facilitate peer support.
4. Valuable supplemental information in our Resources section.
We’re here to help you on this journey, prepare you for the immediate future, and give you hope. Feel free to contact Stephanie privately if you wish at firstname.lastname@example.org.
$10 minimum suggested donation for book download to go toward support and future development. Thank you.
You can make an online donation by credit card, and you will be directed to the University of Kentucky Office of Development. All donations are tax-deductible and receive an acknowledgement letter, which also serves for tax purposes.
Click here to purchase a printed version of "Diagnosis to Delivery" from Woodbine House for $15 or "Your Loved One is Having a Baby with Down Syndrome" for $8.
We provide a free downloadable practical guide for expectant moms, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome. We also host an interactive blog, which gives expectant parents a place to ask questions, voice concerns, and receive feedback.
We offer support to expectant parents who have received a prenatal Down syndrome diagnosis and are moving forward with their pregnancy. For expectant parents first learning about a diagnosis, please refer to your medical provider and Understanding a Down Syndrome Diagnosis distributed by Lettercase.org.
Please be advised that we are not medical professionals. All decisions about your care should be fully discussed with your medical care provider. This book is a resource and not a substitute for good quality medical care and advice.