Posts Tagged ‘down syndrome’

Playing the “waiting game”

July 24, 2014 in Diagnosis, Emotions

Did you decline invasive testing, but had a higher chance that your baby has Down syndrome? Many moms keep a “foot in each world,” wondering if their child has Down syndrome, but unwilling to take the risk of diagnostic testing. Many wish to prepare for the possibility so that they can hit the ground running if the baby has Down syndrome. Others ask their doctors to treat the pregnancy as if the baby has Down syndrome. Are you a waiting mom? What challenges has the not knowing caused you? What concerns do you have as you wait? Experienced moms who waited for answers, do you have any advice?

New non-invasive prenatal screening tests, such as the MaterniT21™, Verifi®, Harmony™, and Panorama™ tests, have also changed the “waiting game” for many expectant moms who can get a result that is now more accurate than previous screening tests (though false positives and negatives do occur). We are finding many who are using those results as confirmation for their pregnancy planning purposes without going on for an amnio or CVS. The amnio and CVS are still considered the most accurate (diagnostic) but also have a very small risk of miscarriage. In fact, one recent study showed that the percentage of women getting an amnio or CVS has dropped since the new tests have been introduced. What are your thoughts on how the new blood tests have (or would have) impacted the “waiting game” in your pregnancy?

All the single ladies

June 25, 2014 in Diagnosis, Emotions, Future, Support


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?

Words that hurt: Asking family and friends to use kinder words

June 2, 2014 in Comments, Friends and Family

Many expectant parents become very sensitive to words they hear, including slang such as the use of the R-word. Many parents are hurt and unsure of how to handle this. If they confront their loved ones, things can get very awkward. If they say nothing, they may feel disappointed in themselves for not sticking up for their child. This is new social territory for you, and it can be very confusing. DownSyndromePregnancy.org has a sample e-mail for you to copy and edit to suit your own circumstances. For our parents who have dealt with this situation, will you share your experiences?

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?

Slice of Life

March 21, 2014 in Future

Many expectant parents would like to see a glimpse of the future with their child with Down syndrome, beyond the lists of medical possibilities. While each family and individual with Down syndrome is unique, one thing most of us can agree on is that the reality of living with someone with Down syndrome is much different than we imagined on that diagnosis day. And that reality is often remarkably ordinary—including soccer practice, sibling squabbles, birthday parties, and snuggles and popcorn during a movie.

While it’s true that some time usually needs to be devoted to speech or physical therapy visits, those visits become part of a daily routine. Speech therapists who come to our homes often become dear friends, and physical therapy appointments may become that time of day where we run to the grocery store. And while it’s also true that our children may have medical issues, some more or less than others, the time spent dealing with those medical conditions is usually a very small slice of a much bigger pie.

Once our children with Down syndrome start developing their own identities, it can sometimes be shocking how they shed those identities we originally envision as new and expectant parents. When my own son was born, I remember writing down everything that scared me: people making fun of him, having other children, having him live with us as an adult, and losing the vision of a child going to college and having a career.

Now at 14, he’s very popular — boys from school show up at my house to play basketball and give him “bro hugs” at the bike trail when they run into him. He has two younger sisters who are 11 and 7, and our biggest challenge there is making sure the girls don’t go in his room without asking and making sure he doesn’t call his younger sisters “embarrassing” and “annoying.” And even though I’m fairly certain he’ll need some help as an adult, he already keeps bags packed in his closet hoping that he’ll get to move to the beach with his best friend someday. There are also now 220 college programs for students with developmental disabilities, and Andy is determined to go and has already shown real promise as a photographer (who has already had an exhibit in Russia and won the PTA Reflections Photography contest for the past 4 years). We also spend our summers as a family on the mountain bike trails.

Andy Bites Edit from southernj on Vimeo.

If you had told me all of this when I was a scared 23-year-old first receiving the diagnosis, I never could have pictured that this was what the future held.

Experienced parents, will you share a peek into your lives?  Start with your child’s name and age, and give our expectant parents a snapshot of your present to help them envision their future.  Expectant parents are welcome to ask questions as well.

Read about “A Day in the Life” of other moms here:

The emotional impact of diagnosis

March 19, 2014 in Diagnosis, Emotions, Post-Diagnosis Health


Many moms report that the most difficult part of being the parent of a child with Down syndrome is the diagnosis and the immediate aftermath. Moms report thoughts and emotions they never thought they would have. Most are not prepared for the onslaught of emotions, and the intensity shocks them. Have you just received a diagnosis? What are you feeling? If some time has passed, how did your feelings change? If your baby has been born, how do you feel now? Do you believe receiving a prenatal diagnosis has helped your state of mind now that you have your baby? Do you regret your decision to find out in advance?

CoorDown in Italy also produced this beautiful video for pregnant moms featuring individuals with Down syndrome. Their message to you expectant moms who may be struggling to understand a diagnosis:

Watch this video featuring people with Down syndrome and their message to future moms by CoorDown in Italy.

In addition, you can also read letters from individuals with Down syndrome to to new members of the Down syndrome community at the Congratulations Project. These letters are designed to inspire, encourage, welcome and, most importantly, congratulate new parents and siblings of a child with Down syndrome.

Who was I then? Who am I now?

February 24, 2014 in Emotions, Future

After giving birth to a child with Down syndrome following a prenatal diagnosis, parents often reflect about how their children with Down syndrome have influenced their lives, their perspectives, and their appreciation for what life has to offer. Expectant moms are often worried about the impact on their lives and families. When baby’s smile and coos are not here yet, often the predictions about impact tend to be negative. While some of moms do have confirmed and possible medical issues on the horizon, worries about such things as these can sometimes take over perceptions of the future.

The moms below share how their child with Down syndrome has changed them …  where they started, where they are now, and how their child has changed the way in which they view themselves, their family, life, and disability.

You can also read a diverse range of stories from sixty-three mothers of children with Down syndrome in GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.

Reclaiming Joy

January 21, 2014 in Emotions

Our book has a chapter addressing the emotional impact of diagnosis, and for most expectant parents this is an emotionally volatile time.  However, many expectant parents progress forward to the extent that they are excitedly anticipating the birth of their baby.  Sometimes there are parents whose difficult days were few or barely there, and others who have left those days behind.

Have you or did you reclaim the joy of pregnancy?  Are your loved ones or acquaintances puzzled by your enthusiasm?  If you were a parent whose tough days were very few, share with those of our parents who are feeling happier than they expected.  Even if your feelings are (or were) happy one day and sad the next, tell us what makes you happy, hopeful, and excited.

The first year: reflections and advice

January 15, 2014 in Future

Many of our expectant moms are ready to deliver, and they could use some “been there done that” advice on the first year of a child’s life.  Were there things you did worth sharing with expectant parents?  Did you have missteps or regrets?  Have you learned of things since that time that you wish you had known then?

Missy has a great blog post on what she did with her daughter Violette in the first year, a great read for expectant moms to tuck away for later.  She talks about attitude, developmental charts, signing, tummy time, and much more.   Let’s hear from other experienced parents about the lessons they have learned.

A letter to your doctor

January 1, 2014 in Birth Plans, Comments, Medical Provider

As you prepare for the birth of your baby, you may have heard some personal stories of moms who experienced some awkwardness in the delivery room or later in the hospital. It may be helpful to tell your doctor what kinds of statements make you comfortable or uncomfortable, with suggestions as to how to talk to you after your baby is born. Ask your doctor to share it in advance with the L & D staff, and bring a few copies with you just in case. Experienced moms, did you write letters to your doctors? Expectant moms, would you like to share a draft of your letter and receive some advice?

DownSyndromePregnancy.org has a sample letter from one expectant parent who combined her concerns for the pregnancy, her questions about care and delivery, and her requests for appropriate language into one letter to her doctor.  You may chose to address questions or concerns orally, or write down your thoughts.  Your desires and concerns may differ drastically from our sample.

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