10 things TO SAY when a baby is born with Down syndrome

by Gillian Marchenko from SpecialNeedsParenting.net:

Today is October 1st, which kicks off Down syndrome awareness month.  In honor of doing my part to raise awareness about individuals like my two daughters Polly and Evangeline, I’m sharing one of my favorite lists: 10 things TO SAY when a baby is born with Down syndrome.

A while back I posted 10 things not to say to a parent of a child with Down syndrome.

Someone emailed me a day or two later.

“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say?  … Please, help us. We really want to know.”

I was touched by this person’s desire to learn about such a delicate subject.

I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.

Here’s my list of 10 things to say to when a baby is born with Down syndrome

10. How are you doing?

After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings but it meant a lot to me when people reached out and “went there.”

Life with a Child with Special Needs is More Ups than Downs

Houston, TX, August 26, 2014 --(PR.com)-- Author Amy Troyer says her son, Ryan, came into this world to make a difference. Born with Down Syndrome, he has given many gifts to his family, Troyer said. “There are many moments of Ups and Downs on this journey but there are so many more Ups.”

Troyer knew there were many inspirational stories from families who have children or siblings with Down Syndrome and she recently compiled them in a new book, "It’s More Ups than Downs," published by Halo Publishing International (http://www.halopublishing.com).

“After Ryan’s birth in 2001 a passion grew in me to reach out, love and share with new parents the wonderful blessings that come from having a child with Down Syndrome.” It’s More Ups than Downs includes stories from families with loved ones ranging in age from 9 months to 64 years old.

Parents of Children with Down Syndrome Should Know That They Are #NeverAlone

by Cassie Fiano from Victory Girls Blog:
I was alone when I found out Wyatt had Down syndrome. And I mean that literally: I was alone in my house. Less than a week earlier, my husband had deployed to Afghanistan. We knew that our odds of having a baby with Down syndrome were 1 in 6. He left the decision on whether or not to get an amniocentesis and know for sure up to me, and I just couldn’t go the rest of the pregnancy not knowing. I got the amnio two days after I watched him get on a bus to go to war, kissed him goodbye and hoped it wouldn’t be the last time. And three days after that, I got the phone call that would change my life forever, alone in my house, with no one to help me through it. My family and best friends were hundreds of miles away in our hometown. My husband was at war. And my world had just been shaken to its very core.
Luckily, I had one of the good ones — doctors, that is. My maternal-fetal medicine specialist was great. He never pushed abortion on me, he never gave me outdated and negative stereotypes. Instead of giving me the news and leaving me floundering on my own, he offered me resources and told me he would help me get in touch with the local Down syndrome support group. Instead of telling me about all the things that my son wouldn’t be able to do, he talked about how he would be playing soccer in five years, and joked about how squirmy he was during ultrasounds. I appreciated all of that, more than I can possibly say, but it didn’t change the fact that I still cried for literally days on end, and it took me weeks to stop being scared and finally accept the diagnosis.

#NeverAlone

by Mark Leach from Down Syndrome Prenatal Testing - a resource for Infomation seekers:
No parent should be alone when they find out their child has Down syndrome. But, right now, too many are.
In our case, we were told our daughter had Down syndrome about 2 minutes after she was born. She was still on the warming table, and a neonatal nurse shouted over her shoulder as she left the delivery room:

Doctor, check the baby. I think she has Down syndrome.

The OB cleared the room and went over the physical characteristics that caused them to believe Juliet had Down syndrome. My wife’s first question was, “what’s her life expectancy?”
Now, please appreciate that.
For most every parent, the birth of their child is described as the happiest moment of their life. And it certainly was for us. But that lasted for all of 2 minutes and then her mom is wondering if the life she just gave birth to will end in a matter of years.
Once we got to our room at the hospital, a pediatrician visited and talked to us about raising a child with Down syndrome. A geneticist woke us up the following morning to explain that more than likely the extra 21st chromosome that is the cause of Down syndrome came from my wife’s egg–nevermind whether that was relevant or appropriate to share at that time. And, then, upon check out, as I was paying the bill, I was handed a dot-matrix printout that was from some plug-and-chug program that read,

[BABY GIRL] has Down syndrome

It proceeded to list only the associated health conditions.
And. That. Was. It.
That was all the information we received. No pictures of children with Down syndrome living in today’s world. Nothing about social supports, inclusive educational settings, or life experiences of individuals with Down syndrome. Nothing in writing other than that crappy, outdated green-and-white striped, perforated dot-matrix printout.

A Painful Week in the Down Syndrome Community

from Whoopsie Piggle:
Real Community, Virtually
When Lyra was four months old, I met a woman at a meeting for new parents of children with Down syndrome. A few weeks later, she sent me an invitation to join a Facebook group titled “(’12/’13) Moms with Kids Rockin’ the Extra Chromosome.” I remember thinking the title was a bit cumbersome, but I don’t recall what I expected when I clicked the “join” button. Not much I suspect for, at first, I hardly looked at or commented on the page. I was busy with my family, my baby and her diagnoses of Down syndrome and bi-lateral cataracts and all the adjustments that go along with any new baby. Today, I have a list of all I did not know or anticipate:

• I thought the group was local, but it is not. Though most members are Americans, the group has families from all over the world.

• I had not anticipated the value of an immediate and large group of moms whose kids with Down syndrome were the same age as my child and, therefore, will go through the same stages of development at roughly the same times as my child because…

• It did not occur to me at first that this would be a lifelong group, but once it did I was floored that something like it hadn’t been created before and reminded that, for all its distractions, the Internet’s impact can be profoundly positive.

• I could not have imagined how close I would become with some of the other moms. Back in the old days, before Facebook, I never participated in chat rooms. Even today, I do not belong to many Facebook groups. Yet there are women I have only met through this group whom I regularly turn to for input. Recently, one of the moms I corresponded almost daily has largely dropped off due to a difficult pregnancy. I miss her as much as if I had a best friend living next door who moved to another state.

• I did not know how much I could cherish the children who give us reason to have a Facebook group nor how invested I would feel in their developmental milestones. Videos of crawling, walking, talking, straw-sipping babies have me cheering in my seat at my computer as if I was watching the Chicago Cubs win the World Series.

• I certainly did not expect my heart to be broken.

In the past week, three babies have died. Baby Fiona died after complications from her second heart surgery. Baby Ryder was fine when he went to bed, had a fever and rash in the morning and was gone by two in the afternoon. And Baby Annie. Baby Annie was not given a heart transplant, for reasons that remain unclear, and her family—mother, father, and two older sisters—have watched her progressively become weaker and bluer. She died early this morning.

Leona Lewis: Abortion of Babies Down Syndrome ‘Hurts My Heart’

by Lauretta Brown from CNS News:
(CNSNews.com) – Upon learning that 90% of babies diagnosed with Down Syndrome are aborted, singer/songwriter Leona Lewis said it was “incredibly sad” and “hurts my heart a bit.”
Lewis, a Brit who shot to fame and a successful musical career after winning the X Factor in 2006, made her remarks on Wednesday at the Global Down Syndrome Foundation Gala at the Renaissance Mayflower Hotel in Washington, D.C.
At the event, CNSNews.com asked Lewis,  “What do you think of the statistic that nine out of ten babies diagnosed with Down Syndrome are aborted?”
Lewis said, “I think that’s so sad. I think that’s incredibly, incredibly sad and, yeah, it hurts my heart a bit.”
The high rate of abortion after a diagnosis of Down Syndrome was reported in the New York Times as early as 2007 and has been confirmed by several different studies.
“About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion,” reported The Times.

Kevin Kilbane pays respect to David Moyes for helping him cope with darkest days

by Henry Winter from the Telegraph:
When Elsie Kilbane was born with Down’s Syndrome in 2004, her father Kevin could not face going back to training at Everton. Kilbane and his then wife Laura had so many decisions to make over Elsie, so many hospital appointments to attend, so many fears to confront and learning to do.

Kilbane remembers clearly those difficult early days. Speaking on the eve of World Down Syndrome Day this Friday, one of the most respected footballers over the past two decades and now a popular BBC pundit, Kilbane is keen for other parents to absorb knowledge and ultimately encouragement from his experience.

“Elsie was born on a Monday night, so I didn’t go back into training, I just couldn’t,’’ recalled the 37-year-old. “Emotionally, I wasn’t in a great place. I spoke to David Moyes on the Tuesday and he said: ‘Look, take us much time as you want.’ It’s one of the reasons I respect David Moyes so much because of how wonderful he was with me at that time, knowing I was going through a difficult stage in my life.

“I went back in training on the Friday, the day before we played at Leicester and I wasn’t considered for the team. From the following week, I was back in normal training. David Moyes said some quiet words to me if he thought he needed to but he didn’t put me under any pressure. He’d known me since I was a lad of 16 (at Preston North End) and knew there was no need to make a fuss around me. He trusted me to look after myself.

“I couldn’t have wished to have been at a better, more caring club than Everton. Incredible. Lee Carsley is my best mate; he has a little lad with Down’s. Lee and I were always close. So when Elsie was born, to have that conversation with him was difficult for me. Lee was brilliant and he helped the other players out. Some were reluctant to talk to me. It is a difficult subject to broach. They knew I was very sad. They were going to Lee for advice on how they approached me. Lee said: ‘Just congratulate him. He’s had a little girl.’

15 people with Down syndrome help pregnant mom

from Raquel Villanueva from 9News NBC KUSA:

On February 9, an expecting mother who had just learned her child would be born with Down syndrome reached out to an Italian nonprofit.

"I'm scared: What kind of life will my child have?" the worried mother asked the Coordown organization in an email.
To help answer her question, Coordown teamed up with Saatchi & Saatchiad agency. Together, they interviewed 15 people with Down syndrome from different countries across Europe.
They released the responses on YouTube, in honor of World Down Syndrome Day, which is March 21.
The sweet answers reassure the expecting mother that her future son will "be able to hug" her and that they will one day grow up and have a job and other responsibilities.
"Sometimes it will be difficult," they caution. "Very difficult. Almost impossible."
But then ask "isn't it like that for all mothers?"

Shifting the Perspective on Disabilities

by Christie Taylor from The Huffington Post:
If I was asked the question, "Was receiving the news your son had Down syndrome a life changer for you?" my answer would be yes, but that wouldn't be entirely accurate.
It's easy to look at a one big, notable experience and say that event changed my life. Yet, when I take some time to ponder my life changing moments, they are not big and notable, but small and simple.
These small and simple moments have come in the form of a joke, a laugh, or a smile. Though the moment was a brief sliver in time, it served as a pivot point, causing a shift in perspective. An internal shift in perspective has the power to change everything.
When my son, Wil, started kindergarten, he began having certain behavior problems. Kindergarten was overwhelming for him, and when he was tired or didn't want to do something, he responded by crawling under a table or plopping himself unmoving on the floor.
This behavior was affecting his learning, and was starting to disrupt the class. Though his assigned teacher's aide and I tried many different approaches, nothing had a lasting effect.
Over time, I worked myself into a high state of stress over these behaviors. I didn't know what to do and felt at a loss. In desperation, I talked to a friend from our Down syndrome support group about this situation. Her son is a few years older than Wil, and I hoped she would have some ideas on how to help him.
As I described Wil's kindergarten story to her, a big, calm, knowing smile spread across her face. She put her hand gently on my shoulder and said, "My son did that all the time! Don't worry! He'll outgrow it. This is what we did..."
Surprisingly, I found myself laughing with her about all the things I had only moments ago been feeling distressed over. This was a pivot point for me. My friend's knowing smile and shared story completely changed my perspective of the situation.

Annie's Mailbox: Parent of child with Down syndrome recalls this inspiring poem

by Kathy Mitchell and Marcy Sugar from the Poughkeepsie Journal:
Dear Annie: When I was in high school, I collected articles that I found inspirational and motivational. One of my most prized pieces appeared in Ann Landers’ column in 1978. It was “Heaven’s Very Special Child” by Edna Massimilla, who had a daughter with severe disabilities. For some reason, I cut out this letter and glued it to a piece of blue construction paper.
I carried it with me through college when I studied to be an occupational therapist. After I graduated, I packed up all of my college “memories” and stored them at my parents’ house. I married and worked for 15 years in hospitals, rehabilitation centers, nursing homes and home health care.
When my third son was born with Down syndrome, he shook, rattled and rolled our world. I had never worked with children with special needs, nor did I have any idea what it was like in “their” world. I was extremely hurt, angry and all the other emotions attached to grief. After three days, I remembered that column and, amazingly, found it at my parents’ house in the first box I opened.
My son is now 20 years old and has just graduated from high school. Yes, we have had trials, challenges and sadness, but we also have had miracles and pure joy. Would you be able to reprint this piece? My copy has yellowed, and this time, I would like to frame it.
— Missouri
Dear Missouri: How prescient of you to have cut this heartwarming piece out of the newspaper when you were only in high school. We are, of course, delighted to reprint it. The first time it appeared, hundreds of readers asked for copies. We know it has touched thousands over the years.
Mrs. Massimilla is a remarkable woman — 97 years old, still writing, playing the organ and helping others.

Life-Changing Lessons for Parents in the UAE

by Dhanusha Gokulan from the Khaleej Times:
Ghada Omar, mother of a one-year-old with Down syndrome is extremely active on Facebook and other social networking websites. Omar’s statuses and updates revolve around her need to find information about her son Hassan’s condition. The boy was diagnosed with Down syndrome at birth.

Apart from looking for support groups online, Omar seeks to raise awareness and gather information about special needs kids through social media. “When Hassan was born I was completely ignorant. I did not think that something like this would happen to us, especially since our family has no history of Down syndrome. But discovering that my child has Down syndrome turned by life 360 degrees. It tests you as a parent on so many levels,” said Omar.

Outlawing Abortion Won’t Help Children with Down Syndrome

by Allison Piepmeier from The New York Times:
My daughter, like all kids, is a delight and a lot of work. Now 4, she talks nonstop, although her speech isn’t always comprehensible. She reads. She performs class conversations for me: “What does a cow say? Moo. Great work, Maybelle!” This evening she sang me “I’m Just a Girl Who Can’t Say No” from “Oklahoma!” (a song that, in my daughter’s case, is clearly untrue because she excels at saying no).

Maybelle has Down syndrome, a condition I knew almost nothing about before she was born. During the four years she has been alive, I have been repeatedly surprised by her curiosity, her individual sense of humor and how much she has accomplished. She doesn’t fit the stereotypes at all. For this reason, it is troubling to me that rates of termination for pregnancies where Down syndrome is identified are extremely high. The most recent research suggests that for every child born with Down syndrome, another is terminated. With the increasing availability of noninvasive prenatal tests that can take place within the first few weeks of pregnancy, many in the Down syndrome and disability rights communities fear that abortion rates will skyrocket, that a process often identified as eugenic will escalate, and that Down syndrome will essentially be eliminated — at least among those with the resources for prenatal testing and the desire to terminate.

That is why some parents of children with Down syndrome are celebrating the news that North Dakota has become the first state to outlaw abortion for fetal conditions like Down syndrome. One parent wrote that “it felt like a small victory seeing that abortions based on Down syndrome were banned — like saying, see, individuals with Down syndrome are valued and protected.”

How mosaic Down syndrome can be missed

by Shannon Blaeske from Lifes Litte Surprises:

Parents are crazy. Especially moms. And especially new moms. Every sniffle raises alarm, every odd movement or out of routine behavior causes suspicion. So it comes to no surprise to me that doctors have quick answers to all these tiny concerns. I am sure the pediatrician night hot lines ring off the hook all night long from worried moms over-reading into the common cold. But what happens when mothers intuition is right? What happens when the rare, not likely cause of the sniffle is the cause? What happens when doctors dismiss symptoms because they are unaware of what they may be indicating?

For two families, just that happened. Both Holly and Sarah knew certain things were not right with their daughters. Numerous small health concerns kept rising up, and each time, they were dismissed with the most common answers.  For Holly, the answers she was given for the cause her daughters constipation and projectile vomiting did not sit right. And for Sarah when her daughter ended up having a very rare congenital subglottic stenosis, she too questioned if something else could have caused it. But who were they to question doctors? They trusted their opinions. They trusted that they knew best.

Sharing their challenges: Moms of Down syndrome boys armed with information

by Dorothy McKnight from Daily Press:
Look around you; there is beauty everywhere. The beauty that is seen daily might be outer beauty or someone's inner beauty.
Families that include a member who happens to have Down syndrome see the beauty in their children everyday.
But there was once a time in American society when parents who gave birth to a baby with Down syndrome were advised to place the infant in an institution and move on with their lives. Even when they decided to bring their child home, parents were not given much encouragement that their son or daughter would have a good "quality" life.
With advancements in genetics and prenatal care, many women who learn during their pregnancy that they will be having a baby with Down syndrome are able to prepare and educate themselves about their child's diagnosis.
Both Cindy Vader and Lourie Schuenke of Escanaba faced those same decisions themselves when they gave birth to their sons, both born with Down syndrome. In each case, their little boys have brought such joy into their own lives and the lives of their families, the women are now motivated to encourage and support other women who are facing the same choices they faced.
Cindy and Lourie are members of the Upper Peninsula Down Syndrome Association based in Marquette yet serving the entire Upper Peninsula, and are working hard locally to provide information to families of children with Down syndrome.
"The Upper Peninsula Down Syndrome Association started as a group of parents getting together to reach out to each other for support and to reach out into our community for awareness," said Lourie.
Jacob, the only child of Cindy and her husband, Len, was born with Down syndrome 15 months ago. The mother of two sons, Lourie's younger child, Konner, 5 1/2, also has Down syndrome.
Cindy learned of her baby's diagnosis during her pregnancy. While undergoing a routine prenatal exam, she was given an ultrasound and saw her unborn child for the first time.
"During the ultrasound there were no evident markers for Down syndrome, he looked perfect," Cindy said with a tender smile. "I even saw him sucking his thumb."
But Jacob's condition was diagnosed during a subsequent amniocentesis that her doctor recommended due to her being high risk because she was already in her late 30's when she became pregnant.
"For me, knowledge is power," said Cindy. "The test showed I was going to have a little boy with Down syndrome. Due to my age I knew there was a chance but the doctor called me at home to tell me for sure. My husband wasn't home so the doctor's words felt like a punch to the stomach. I didn't have any information about Down syndrome and didn't even know anyone with Down syndrome."
After discussing the call with her husband, Cindy said she was upset when subsequent phone calls yielded no offer of information or assistance.
"When I think about it, It still feels like it was just yesterday," she said.
Cindy then decided to take a few days off work to education herself about her unborn baby's diagnosis. After connecting with another soon-to-be-mother who was also expecting a child with Down syndrome, she learned about the support group.
Lourie's discovery of her baby's diagnosis didn't become evident until after his birth.
An ultrasound was inconclusive and suggested that the baby might be developing a tumor on the base of his brain and he might be born with cerebral palsy. Subsequent ultrasounds showed no tumor and doctors said that her child was healthy. Down syndrome was never mentioned.
"His diagnosis of Down syndrome didn't even occur until after he was born, and he had so many medical issues they took priority over everything," Lourie said.
But Lourie soon came to the realization that the road on which she was about to embark with her little son was going to be a rocky one due to those medical issues. A day after his birth, Konner was taken from St. Francis Hospital where he was born, to Marquette General where he spent the next 26 days in the Neonatal Intensive Care Unit (NICU) before he was airlifted to Children's Hospital in Milwaukee. Konner was born with pneumonia in both lungs and it was discovered that he a large hole in the center of his heart which needed a full AV canal repair. He also was born with duodenal atresia, and malrotation of the colon. Her son also had other medical issues and later had a G-tube placed, which is a tube to the stomach for feeding. He underwent three surgical procedures the first day in Milwaukee.
"I was told he was not going to survive," Lourie said.
Almost three months after his birth, Konner was allowed go home from the hospital for the first time.
But Konner's ordeal wasn't over. He still needed surgery to correct his heart condition.
"He weighed 6 pounds, 13 ounces when he was born but by the time a week had passed, he was just about 4 pounds," Lourie said. "He needed to have the heart surgery and he had to be at a certain weight in order to undergo open heart surgery and survive."
More than 5 years later and with a total of 15 surgeries under his belt, Konner is now a student at the ISD Learning Center.
"He's doing very well there," Lourie said. Although due to his medical issues, most milestones were delayed. Konner didn't walk until he was almost 3. He continues to undergo physical and occupational therapy as well as speech therapy.
"We knew that Konner's jaw and surrounding muscles were weak so he began learning to use sign language when he was barely two and is now trying to learn to verbalize along with sign," Lourie said. "He's also had four surgeries on his ears and that might have contributed to why he was unable to talk. He wasn't able to hear in the first place."
Lourie smiles when she speaks of the special relationship between Konner and his older brother, Brendon16-years-old. "They're great together, " she said.
So what hopes for the future do both ladies have for their sons?
"I have as much hope for Konner as I hope for my 16-year-old son," said Lourie. "None of us have any guarantees for our children. There are many typical children who develop serious problems as they grow up and you don't give up on them. So why shouldn't I expect the best for Konner?"
Cindy expressed even more encouraging news for families with children who have Down syndrome.
"With more research and more therapies that are becoming available, I've learned of more children with Down syndrome graduating from college and even getting master's degrees," she said.

Carrie McLaren: Learning the Language of Special Needs

by Carrie McLaren from Jacksonville.com:
When my youngest daughter, Molly, was born with Down syndrome in 2010, I knew absolutely nothing about the special-needs world. It was an entirely new place for me, and besides the fear and shock of her diagnosis, I was scared for what the future held for our family.
In the months following Molly’s diagnosis, I wanted to educate myself on the language associated with Down syndrome. It was important to me to learn right from wrong and the proper usage of terms, but also understand how to help others come to terms with Molly’s condition.
As we’ve grown as a family, I’ve found it therapeutic to talk with others about Molly’s diagnosis. Yet, I’ve noticed there seems to be an uneasy feeling when others talk about Molly’s condition. It’s not a fear of asking questions or loving Molly — there’s certainly no shortage in that area. It’s the not knowing of how to actually refer to her condition.
The National Down Syndrome Society site’s preferred language reference guide is a wealth of information for a mom like me, new to the special-needs world.
And based on the knowledge I’ve gained from them, here’s my gentle introduction to the preferred language when referring to individuals with Down syndrome (or any disability for that matter).

People don’t “suffer” from Down syndrome and they certainly aren’t “afflicted” with it either.
Down syndrome isn’t a disease; you can’t “catch” it. It’s a chromosomal condition. In fact, there are 400,000 Americans living with Down syndrome.
While many times it’s referred to as Down’s syndrome, the preferred American usage is Down syndrome. English physician John Langdon Down characterized the condition but did not have it.
Individuals with Down syndrome (and any disability) should be referred to as people first. Always. Rather than “a Down syndrome girl” or a “Down’s child,” the proper wording should always be “a child with Down syndrome.” No exceptions.
This last one is the big one for me. A person should never be labeled by his diagnosis or condition.
While I understand that some may see this as trivial, to a parent of a child with special needs it’s extremely important and somewhat personal, too.
I want my daughter to be recognized as an individual, not by the fact that she just happens to have an extra chromosome.
I believe a “people-first language” should be applied to all people of all walks of life, not just individuals with Down syndrome. Everyone deserves the right to be thought of as a person and not as his disability.
I don’t feel it’s my place to correct others when they reference it incorrectly, because honestly before Molly was born I didn’t really know the “proper” way either. The only way to strengthen a community is to educate a community.
I may not be an expert in much, but I’m a mom raising a child with Down syndrome. I like to think that makes me an expert in love, understanding and kindness, too.

Read more at Jacksonville.com: http://jacksonville.com/news/metro/2012-09-16/story/carrie-mclaren-learning-language-special-needs#ixzz26lNfpHBP

Participate in a study on delivery of Down syndrome diagnosis

To Whom it May Concern,

My name is Jane Goodwin and I am a student researcher at the University of Newcastle, Australia. Currently, I am working with Dr Linda Campbell (chief investigator) on an investigation into parents' and caregivers' experiences regarding the diagnosis of Down syndrome. Specifically, we are interested in the diagnosis experience, how the children were told, and coping methods used. We are also looking at caregivers' and parents' concerns around telling their children about the syndrome. This project has ethics approval from the University of Newcastle's Human Research Ethics Committee. Approval No. H-2012-0129.

To investigate this, a 20 – 30 minute questionnaire has been created which can be found at www.wix.com/c3094005/geneticdisorders. We hope that the results of the study will provide a better insight into the parental disclosure process and that this in turn will improve healthcare models and processes associated with the care relating to this syndrome.

Link to our study website (www.wix.com/c3094005/geneticdisorders). We are seeking people 18 and over who are either a parent or a caregiver of an individual with Down syndrome.

If you have any questions or concerns, please contact myself (c3094005@uon.edu.au) or Dr Linda Campbell (Linda.E.Campbell@newcastle.edu.au).


Thank you for considering this request,

Jane Goodwin and Linda Campbell

will Sue Sylvester's baby have Down syndrome in "Glee" season 4?

Glee Spoiler Alert!

from Wetpaint by Beth Douglass and Ryan Gajewski:
Back in Glee Season 3, Episode 15: “Big Brother,” an abnormal test result gave Sue (Jane Lynch) the shocking news that her unborn baby might potentially have Down syndrome. Nothing could be certain, though, so we still held out hope that Sue might give birth to a happy and healthy little tot.
Sadly, it seems that just won’t come to be. Jane Lynch spoke with E! Online on August 5, she shared that though Sue will have “just given birth to a beautiful baby girl” when the show returns for Season 4 this fall, the tiny infant also “has Down syndrome.”
Given the care and sensitivity Sue has displayed when working both with Becky (Lauren Potter) and with her late sister, Jean, we have no doubt that the new mother will more than rise to the occasion. Plus, can you imagine a Sue-Becky-Baby trio — how adorable will that be?

from Glee Wiki:
Sue is currently pregnant as of On My Way. In Big Brother, she finds out that her child is female and has a high risk of having Down syndrome, similar to how her sister Jean and cheerio of hers, Becky, the two people closest to her, had Down syndrome. Her baby will be born by the time season four starts

also from Glee Wiki:
In Big Brother, Becky shows up in Sue's office door, hovering without saying anything. Sue tells her that she is, in fact, interrupting. Becky tells Sue that she heard about her baby. Sue had learned earlier in the episode that there were irregularities in the test results for the baby, so she clearly assumes that is what Becky is talking about. When Becky says that she heard the baby is a girl, Sue smiles and says, "Just like you," and hugs her, thoughtfully repeating the phrase, indicating that the baby likely has Down syndrome. Becky offers up a parenting tip for Sue to work on her patience.

from teen.com:

Sue gets good — and bad — news about her unborn baby. The good news? It’s a girl, like she wanted. The bad news? She finds out that there were some “irregularities in the amnio” and that her baby has Down Syndrome like Becky. Ok, it’s not unlikely that that would happen to a woman of her age that’s pregnant — but it is unlikely that she’s even preggers in the first place. From a “celebrity” sperm donor. Puleez.

from the Washington Post by Jen Chaney:

Before moving on to the musical numbers assessment, I should probably also note that Sue Sylvester found out that her unborn baby girl likely has Down syndrome, and that she’s also still feuding with Nene Leakes, who is now co-coach of the Cheerios.

from Remington Remer:

Anyways, the ironic part...Sue Sylvester the cheerleading coach (which you would have done too to be just like your favorite Aunite) found out she was pregnant with a girl that may have Down's Syndrome. That part in the show made me smile and the reason there were no tears is because to me you would have to be lucky to have a baby with Down's Syndrome just like you. Sue Sylvester hugged one of her cheerleaders, Becky because she also has Down's. Becky told Sue the only advice she had was for Sue to be "Patient!"

from E Online by Bret Malec and Liz Calvario:

Meanwhile, Lynch also dished on what's in store of Sue Sylvester and her new baby in season four of Glee.

"Momentarily I'm nice," she said. "I've just given birth to a beautiful baby girl who has Down syndrome and her name is Robin. Which to say hearkens thoughts of spring and new beginnings and her favorite Bee Gee."

Group Challenges Down Syndrome Testing

from News 3 by Alex O'Hara:

The International Criminal Court is set to launch a formal preliminary examination into the New Zealand Government's antenatal Down syndrome screening programme.

Saving Down’s, the group who filed the complaint, says the Government programme devalues the lives of their children and that's a form of persecution.

Taya, Dylan and Molly are friends, all with Down syndrome, born with an extra 21st chromosome.

Dylan’s mother, Janine Bezencon, says bringing up a child with Down syndrome is “an absolute joy”.

“I really mean that with all my heart.”

A group of other parents, known as Saving Down's, agree and have taken the Government to the International Criminal Court for its antenatal Down syndrome screening programme.

“We have got pregnant women going to their midwives,” says Mike Sullivan, father of three-year-old Down-affected Rebecca. “They've got a wanted pregnancy. They're being given the opportunity to engage in a testing programme that selects that child on the basis of its genetic difference and that's a practice of eugenics and that's prohibited under international law.”

Last year they filed a complaint with the ICC at The Hague, which usually deals with war crimes. They've now learnt the court has decided to go ahead with a formal preliminary examination, making it one of only eight cases worldwide.

“This is unprecedented,” says Mr Sullivan. “They've got a result after a thorough legal analysis of the situation. It means the prosecutors accept that there are merits and concerns with the information raised by the court.”

More information will now be tabled and further discussions held between the prosecutor’s office and the New Zealand Government. 

Saving Down’s hopes this will eventually lead to the end of the programme, but what if it doesn't?

“They'll be a dying breed pretty much,” says Ms Bezencon. “That will be a real shame.”

The Ministry of Health says New Zealand’s antenatal screening programme is in line with others overseas. 

But Saving Down’s says that if they can stop the programme here they can use it as a precedent to stop programmes in other countries.

Read more: http://www.3news.co.nz/Group-challenges-Down-testing/tabid/1607/articleID/259658/Default.aspx#ixzz1zUPFQSP1

Leading with her heart

From the News Journal by Esteban Parra:

A day after the birth of her first child, Coleen Popp was handed a book on Down syndrome.

The specialist explained to her and her husband, Christopher Popp, that the best thing they could do now was to bond with their son Brendan.

“Before the day was over, that book was done,” she says. “I’d met a few people with Down syndrome, but I didn’t know what it was. I didn’t know what that meant. I didn’t know what that meant for Brendan. I needed to know.”

Her husband went on the Internet and found all sorts of resources.

“That started our journey,” she says.

It was the family’s introduction to the genetic condition in which a person has 47 chromosomes instead of the usual 46. While symptoms vary and can range from mild to severe, Popp was determined that her son – and all others with special needs – should be accepted and treated like any other member of the community.

Becoming a mother to Brendan, her oldest son, also launched Popp on a quest to let people know of options available for children with special needs. Through her work with various organizations, including the Delaware Foundation Reaching Citizens with Intellectual Disabilities, where she was recently named a board trustee overseeing education awareness programs, Popp aims to let others know about available options, as well as letting people better know the special-needs community.

“Having a kid with a disability is very overwhelming, yes I will agree to that,” says Popp, now 38 and the mother of three in Middletown. “But it doesn’t have to be either – there are resources available. If you have any doubts in your mind, erase them.

“For every time the doctor says ‘He’s not going to do this’ or ‘He can’t do that’ or ‘He’s going to have a hard time with this,’ erase that and let your son or daughter set their own boundaries and set your own goals and make sure you obtain them. Make sure they’re attainable because that’s what helped us.”

Her enthusiasm to educate others is an inspiration to many involved in special-need programs, says Anthony T. Glenn, the foundation’s executive director.
Read the full article here.

Jon Will's gift

from the Washington Post by George F. Will:

When Jonathan Frederick Will was born 40 years ago — on May 4, 1972, his father’s 31st birthday — the life expectancy for people with Down syndrome was about 20 years. That is understandable. The day after Jon was born, a doctor told Jon’s parents that the first question for them was whether they intended to take Jon home from the hospital. Nonplussed, they said they thought that is what parents do with newborns. Not doing so was, however, still considered an acceptable choice for parents who might prefer to institutionalize or put up for adoption children thought to have necessarily bleak futures. Whether warehoused or just allowed to languish from lack of stimulation and attention, people with Down syndrome, not given early and continuing interventions, were generally thought to be incapable of living well, and hence usually did not live as long as they could have.

Down syndrome is a congenital condition resulting from a chromosomal defect — an extra 21st chromosome. It causes varying degrees of mental retardation and some physical abnormalities, including small stature, a single crease across the center of the palms, flatness of the back of the head, a configuration of the tongue that impedes articulation, and a slight upward slant of the eyes. In 1972, people with Down syndrome were still commonly called Mongoloids.

Now they are called American citizens, about 400,000 of them, and their life expectancy is 60. Much has improved. There has, however, been moral regression as well.

Jon was born just 19 years after James Watson and Francis Crick published their discoveries concerning the structure of DNA, discoveries that would enhance understanding of the structure of Jon, whose every cell is imprinted with Down syndrome. Jon was born just as prenatal genetic testing, which can detect Down syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.

This era has coincided, not just coincidentally, with the full, garish flowering of the baby boomers’ vast sense of entitlement, which encompasses an entitlement to exemption from nature’s mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. That is what happens to 90 percent of those whose parents receive a Down syndrome diagnosis through prenatal testing.

Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting and greedy, and remain greedy. People with Down syndrome must remain brave in order to navigate society’s complexities. They have no choice but to be trusting because, with limited understanding, and limited abilities to communicate misunderstanding, they, like Blanche DuBois in “A Streetcar Named Desire,” always depend on the kindness of strangers. Judging by Jon’s experience, they almost always receive it.

Two things that have enhanced Jon’s life are the Washington subway system, which opened in 1976, and the Washington Nationals baseball team, which arrived in 2005. He navigates the subway expertly, riding it to the Nationals ballpark, where he enters the clubhouse a few hours before game time and does a chore or two. The players, who have climbed to the pinnacle of a steep athletic pyramid, know that although hard work got them there, they have extraordinary aptitudes because they are winners of life’s lottery. Major leaguers, all of whom understand what it is to be gifted, have been uniformly and extraordinarily welcoming to Jon, who is not.

Except he is, in a way. He has the gift of serenity, in this sense:
The eldest of four siblings, he has seen two brothers and a sister surpass him in size, and acquire cars and college educations. He, however, with an underdeveloped entitlement mentality, has been equable about life’s sometimes careless allocation of equity. Perhaps this is partly because, given the nature of Down syndrome, neither he nor his parents have any tormenting sense of what might have been. Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on.

This year Jon will spend his birthday where every year he spends 81 spring, summer and autumn days and evenings, at Nationals Park, in his seat behind the home team’s dugout. The Phillies will be in town, and Jon will be wishing them ruination, just another man, beer in hand, among equals in the republic of baseball.