Posts Tagged ‘downsyndromepregnancy.org’

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.

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.

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.

Siblings Speak Out: Jennifer Meyers Bekins, MS, CCC-SLP

December 3, 2013 in Siblings

SIBLINGS SPEAK OUT
Dreams realized: the gift of Down syndrome
Jennifer Meyers Bekins, MS, CCC-SLP

As a nine-year-old little girl with two younger brothers all I wanted was to have a sister. I wished on stars, birthday candles, and dandelions for one. Then one day my mom came in my bedroom and wrote this in my diary:

August 24, 1987

“Mom told me she was pregnant.”

Yes! Pregnant! And I knew it was a girl. Not because we found out at the 20-week ultrasound. I knew all those wishes and prayers had finally paid off. And when she was born and I saw her fluffy blonde hair and big blue eyes. My parents even used the name I had chosen, April Joy, which like my new little sister, was perfect.

I found out soon after she was born that April had Down syndrome. I can’t remember if I knew anyone with Down syndrome. When April was nine months old I wrote that same diary:

January 18, 1989 1:45 pm

“Dear Diary, I’m sick with a stomac flue. I don’t have very much homework. My   sister April Joy has Down syndrome! It’s not bad. You want her ex-tra chromozone?”

I remember asking my father and aunt if having Down syndrome meant April was “R-E-T-A-R-D-E-D?” My father was very gentle in his answer telling me he didn’t know. That she would probably learn things slowly. That he and my mother would love her just like us. She was one of us – family.

Even though I knew April had Down syndrome she was still perfect in my mind. She just had this one little thing we needed to “fix.” At least that’s what I thought therapy was. The therapists were going to make Down syndrome go away. As an adult I realize that Down syndrome is part of who April is – and it’s not going away. And neither are her blue eyes or blonde hair. It’s one of the many things that make her who she is as a whole person.

“Will my children have a true sibling relationship with my child with Down syndrome?”

April is my sister. We’ve had our share of laughs and fights. But we enjoy just being sisters. She can talk to me about her love life and I can vent about our mother. Sisters.

My relationships with my youngest brothers Jacob and Sam are very different, not because they are adopted and have Down syndrome, but because of the large age difference. I moved away when they were only two and six years old, so I’m more like a close aunt. I’ve been happy to get to know them in their “teens” since they moved to Cincinnati with my parents and sister.

It is said that the sibling relationship is the longest relationship we experience. Parents of children with Down syndrome can nurture this relationship in the following three ways:

First, expect your children to be children together. Encourage game play, dress-up, dancing, sleeping bag camp-outs in the living room. Depending on age and birth order some children will are more likely to be little-mothers – they want to do everything for their sibling with Down syndrome. I was this way given a 10 year age difference between April and me, being the oldest, and being a girl. Make sure the sibling does not have too many responsibilities changing the role from sibling to helper or additional parent.

Second, create an atmosphere of consistency. Tell all the children in the household about your behavioral expectations. Some make a list of family rules that no one is allowed to break, including your child with Down syndrome. Statements such as, “Your sister doesn’t understand. She has Down syndrome,” will only foster frustration and resentment. Children with Down syndrome learn these exceptions early on much to the annoyance of their siblings.

Finally, understand that your child with Down syndrome is one member of the family. Make decisions that are for the best interest of the family and everyone will benefit. You will need to examine your financial decisions and preparations for the future. Decide with your spouse or partner how you are going to delegate time.

“Will a child with Down syndrome will take up a large amount of parental time, depriving the other children of attention?”

Doctor appointments, therapy visits, and school involvement may involve time away from other children. Talk with your children about how this makes them feel. Listen to them, give them support, and understand it is okay if you don’t have all the answers. Balance time spent on one child with a family movie, game night, or a “date” alone with each of your children.

I’ll be honest. We went to a lot of therapy visits, but my mother and siblings’ therapists did an amazing job including me the process. Conversely, April was included in our lives too. She came to swim team, basketball games, and soccer tournaments. We were a family. We enjoyed life together.

“Will my other children be prevented from achieving their dreams and having a normal life?”

I never thought, “Now that my sister is born I’ll never enjoy the life I was meant to live!” No, my life has not been normal. It’s been atypical – and richer, and fuller than I ever thought imaginable. My brothers Derek and Dan are in very different fields of study from my own, living full lives. Living with April, Jacob, and Sam did not prevent us from achieving our own, very different, dreams.

Now that I’m married and have two sons I appreciate my siblings with Down syndrome even more. The relationship my sons have with my siblings with Down syndrome is different than with my brothers without Down syndrome, but that doesn’t mean it’s any less important. In fact, being involved as an adult with my siblings with Down syndrome has provided my children life-lessons on topics like acceptance, disability awareness, fairness, and civil rights.

“I’m afraid there will be only negatives, no positives, of having a sibling with Down syndrome.”

It is my hope that my perspective has alleviated this concern. It’s been nearly 23 years since April was born so I have the benefit of looking back on our childhood together. There were and continue to be laughs and tears, fights and late night chats. I did not choose to have a sister with Down syndrome and neither did my parents, but my wish did come true. She just came with something more than I’d expected.

Jennifer Meyers Bekins, MS, CCC-SLP,  is a Speech Language Pathologist at The Jane and Richard Thomas Center for Down Syndrome, part of Cincinnati Children’s Hospital Medical Center.  She has five siblings: Derek (30), Dan (27), April (22 with Down syndrome), Jacob (18 with Down syndrome), and Sam (13 with Down syndrome).

Jennifer maintains Communication Skills for Life, a speech-language resource blog for parents, professionals, and friends of children with Down syndrome.

CLICK HERE to make comments on this essay.

Expectant parents have many concerns, including their other children.  Parents ask themselves hard questions such as, Will my other children be prevented from achieving their dreams and having a normal life?” Our pregnancy book references the research on positive impact on siblings, but today we start a new series, “Siblings Speak Out” to hear first hand sibling perspectives.  Our first guest is Jennifer Meyers Bekins, MS, CCC-SLP.  Jennifer is a Speech Language Pathologist at The Jane and Richard Thomas Center for Down Syndrome, part of Cincinnati Children’s Hospital Medical Center.  She has five siblings: Derek (30), Dan (27), April (22 with Down syndrome), Jacob (18 with Down syndrome), and Sam (13 with Down syndrome).

CLICK HERE to read Jennifer’s advice to you.

Positive support from friends, family, and health care professionals

August 26, 2013 in Comments, Friends and Family, Medical Provider, Support

Katie Ryder with her grandmother Lona Kewley

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.)

Breastfeeding

August 7, 2013 in Breastfeeding

Our Diagnosis to Delivery book has an entire chapter on breastfeeding which is a must read for any expectant mom who wishes to breastfeed her baby.  One suggestion for those who are preparing to breastfeed their newborn with Down syndrome is to consult with an occupational therapist or lactation specialists before or shortly after birth. What types of experts did you find to be particularly helpful, and what tips were most helpful to you?  Experienced moms, what was your experience?  Expectant moms, if you plan on breastfeeding, do you have questions, concerns, or a plan?

Children’s Hospital Boston also has a presentation, “Breastfeeding and Down Syndrome,” available for viewing which will help you if you wish to breastfeed your baby with Down syndrome. The presenter is Kimberly H. Barbas, BSN, RN, IBCLC, of the Lactation Support Program at Children’s Hospital Boston. She covers the benefits of breast milk, particularly for the baby with Down syndrome. She also covers tips for the delivery room, information about positioning (with helpful photos), pumping techniques to maximize caloric intake, monitoring weight gain, supplementation, and so much more. This presentation is a “must view” for any expectant mom planning on breast feeding.

What will baby need? (It’s a Baby Shower!)

July 31, 2013 in Friends and Family, Future

Katie Ryder with her grandmother Lona Kewley

Experienced moms, help our expectant parents with their baby registry! What items did you use during infancy that will be a big help for new parents of a baby with Down syndrome? Expectant moms, ask follow-up questions, or talk about the supplies you have already.

Lets get the list started with a few of our “must have” items:

Two products for congestion are an absolute must, the NoseFrida, otherwise known as the snot sucker (I know, it looks gross, but trust us), and saline mist.

And since research shows the benefits of sign language for our kids, put Signing Time videos on your list. The videos are fun, the songs are catchy, and your other kids will enjoy them too.

Finally, every parent of a child with Down syndrome should have a copy of Will Schermerhorn’s DVD “Down Syndrome – The First 18 Months.”  Check out Will’s website to order the film.

There are many items that can be specifically helpful for babies with Down syndrome, but experienced parents of infants with Down syndrome also emphasize that they need or want the same things any baby needs. So, please help us by sharing items you found particularly useful for a baby with Down syndrome and also those things you found generally helpful, wonderful, beautiful, or clever.

We have lots of great suggestions below and would love to hear more!

Down syndrome Blogs