Posts Tagged ‘down syndrome group’

15 Reasons to contact your local group

April 16, 2014 in Support

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.

Adapted (“prenatalized”) from Missy’s blog post.

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?

Support for Dads

August 29, 2011 in Dads, Emotions, Resources, Support

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:

video: http://www.youtube.com/watch?v=-jZoPggEfVQ

(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:

D.A.D.S. blog

Dad Dennis on life and fatherhood, with his thoughts immediately after diagnosis

Yep, Im Lost; A Dad’s Journey, an expectant dad’s blog, with some reflections on how expectant moms and expectant dads process things differently.

Ramblings of the Bearded One, a blog from a dad in Scotland

Our Jacob, a blog from a dad in Ireland

South Dublin Dad, another dad in Ireland

Down Syndrome Life, a blog by a dad with five children

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.

Down syndrome Blogs