Down syndrome Archives – Page 5 of 10

Down Syndrome Advocacy in Rwanda

November 9, 2017 by Courtney

“When my son was born my husband and I were so scared. The doctors never said Down syndrome, but you could tell something was wrong. We didn’t know anyone with Down syndrome. We were so worried.”

You could take the above quote from the mouth of just about any of the 220,000 moms giving birth to a child with Down syndrome worldwide each year. But the level of fear and worry changes drastically depending on where you live.

In the densely populated, mostly rural, tiny mountainous country of Rwanda, Edwige Musabe says it’s like Trisomy 21 doesn’t even exist. Her discovery of Down syndrome starts with the quote above; at the 2008 birth of her first born son, Yuhi (pronounced “U-ee”).

“Mental disability is invisible in Rwanda. The government doesn’t talk about these people. They’re not included. The parents don’t want to talk about it, because of the shame. They believe they’re to blame. They’re hidden in plain sight,” Edwige recently told me on FaceTime from her Rwandan home.

Related: Advocates Urge U.S. Congress to Increase Funding for Down Syndrome Research

Edwige, her husband, Gilbert, and their son Yuhi were among the very lucky. “Although we love Rwanda and will stay here, we had lived in Canada for many years and knew we would have to go there to get the answers we desperately sought,” Edwige says. There are at least 400 identified people with Down syndrome living in Rwanda. But with a population of 12 million and the statistic of Trisomy 21 affecting at least 1 in 1,000 births every year, simple math proves that number to be a low estimate.

9-year-old Yuhi is doing well, but his parents can afford to send him to a private school that accepts him. He has not received any early intervention, therapies, or medical care that most Americans with Down syndrome receive for free.

A number of troubling policies and stigmas have led to that low estimate. Rwandans must leave Africa to get an official blood test to confirm the diagnosis. Yuhi was officially diagnosed in Canada. Babies born with heart defects are turned away from hospitals there. Doctors tell them heart operations are reserved for typical children. “Parents can’t afford to send their child to India for heart surgery. Sadly, these children die,” Edwige explains. Early intervention, special education, OT, PT, speech? Nonexistent, unless you can afford it privately.

Read below to find out what you can do to help people with Down syndrome in Rwanda!

But Edwige had seen the possibilities in Canada, and wants better for her countrymen. A natural advocate, she started investigating how to start a national organization to support parents and their children with Down syndrome. She found Down Syndrome International (DSi) through Dr. Mutesa Leon, whom Edwige says is the only doctor in all of Rwanda knowledgeable about Trisomy 21.

Down Syndrome International (DSi) is a non-profit based in the United Kingdom, but serves member organizations in 23 countries including Albania, Bangladesh, Botswana, Colombia, Guatemala, Jamaica, Madagascar, Malawi, Mauritius, Myanmar, Nepal, Nigeria, Pakistan, Peru, Rwanda, Sri Lanka, Tajikistan, Tanzania, Turkey, UAE, Uganda, Zambia, Zimbabwe.

DSi Outreach Coordinator, Nathan Rowe, says they give financial, advocacy, and organizational assistance to mostly grassroots groups. “Some are made of a group of parents who meet regularly and work voluntarily, while some have a few paid staff. Generally organisations are made up of parents and family members or other people who have a personal interest in improving the lives of people with Down syndrome in their country,” Nathan Rowe explains.

Related: Social Media Gives Self-Advocate Voice

Dr. Mutesa Leon and Edwige used a small amount of funds from DSi to start the Rwanda Down Syndrome Organization (RDSO). With the money they hired a permanent secretary, and opened a small office building with a telephone in the capital city of Kigali at the beginning of 2017. “People don’t use social media in Rwanda, so radio and telephone is how you reach the most people; even in the most remote parts of Rwanda. The wealthiest radio stations have allowed us to spread our message for free. We tell listeners to call us, visit us, or go to their nearest hospital for resources, and lots of people are calling,” Edwige explains.

The first World Down Syndrome Day celebrations in Rwanda on March 21, 2017.

A group of about 100 families also met in the capital city for World Down Syndrome Day 2017. “It was an amazing experience. For the first time, we didn’t feel alone. The more people we reach, the more we can advocate, and the louder our voices will be heard” Edwige says.

Edwige says a lot more needs to be done. Donations are important, but Edwige says free expert advice on how to advocate and provide services for their loved ones would be even more affective. “My dream is to have a center for my son Yuhi and all Rwandans living with Down syndrome. They could go there for therapies, education and social interaction. We need experts to teach us about best practices. Dr. Leon is also trying to get doctors to come here to do heart surgeries to save our children,” Edwige explains.

To learn more about the other countries Down Syndrome International supports click here, and to donate to those countries click here.

If you are interested in donating to Rwanda Down Syndrome Organization specifically, please reach out to Edwige Musabe at emusabe.ed@gmail.com.

What have you noticed about the similarities and differences in caring and advocating for people with Down syndrome in different countries? Share your experiences with me below! I’d love to share your story on Inclusion Evolution!

What I Should Have Asked When My Son was Born with Down Syndrome

October 31, 2017 by Courtney

We had a lot of questions when Troy was born.

Troy on the right, with his typical twin and Trenton

Why was this happening to us?

What health problems will he have?

Would he be high functioning?

Will Troy ever play with his typical twin brother?

Would we ever be happy again?

All of these questions focused on how Down syndrome would negatively impact our lives. Most of them revealed my husband, Trenton, and I’s utter ignorance when it came to Troy’s diagnosis. Some of our doctors and a quick Google search didn’t help matters. They seem to perpetuate only the pathology of Down syndrome; completely missing the beautiful life and possibilities that I held in my arms.

Of course hindsight is 20/20 and the reality is, just like parenting any child, you never know how your life will change until you walk down that path. So, if I could go back to that sad, scared mama almost five years ago I’d whisper one question into her ear:

How could Troy transform our family for the better?

It’s not a question that doctors or Google could ever answer. It’s not a question that even came to mind in the midst of the overwhelming grief of what should have been. It wasn’t until I could let go of the should’ve/could’ve beens, that I realized how beautifully made my son is and how Down syndrome can open unexpected doors for myself and my family.

Acceptance of Down syndrome became our silver lining.

Ironically, we didn’t accept Down syndrome that easily. We wrestled with the idea of it constantly those first few months of Troy’s life. It wasn’t until we accepted our son, that we accepted Down syndrome. You may have heard the sayings “my son is not Down syndrome” or “when you’ve met one person with Down syndrome, you’ve met ONE person with Down syndrome.”

These sayings are at once completely true and false. It wasn’t until Troy’s personality revealed it self (that first smile, the way he looked around for his brother whenever he wasn’t near, later when he woke up early every morning just like his Daddy, or loved to bust a move like his Mama), that we realized we would be happy again. Troy is unique and ours. Down syndrome doesn’t define him, but Down syndrome has found a place in our heart and has emboldened us to live better.

Read a Related Post Here: How Having a Son with Down Syndrome Pushes Me to be “That Mom”

Our family has become champions of Troy and all people who are different or vulnerable to misunderstanding. My husband had just graduated from Medical school when Troy was born. All he saw when he looked at Troy then was health problems related to Down syndrome. Now, he sees someone who loves life in spite of all that. This has changed the way he doctors, and sees his patients. It’s made him more compassionate and caring.

I’ve fully embraced my role as lead advocate in our household. I created this blog because of Troy, and will now train as a special education advocate to help other families. Although each of our loved ones with Down syndrome are unique and different, there are issues that bind our community together. We must stand together to ensure our loved ones get the support they need to be included in every aspect of society, whether that be school, employment, or our health care system. Five years ago, I couldn’t imagine myself presenting in front of my state legislature about a bill that I advocated for, but this fall I will do just that.

Read a Related Post Here: 5 Ways You Know You’ve Become Your Child’s Best Advocate

Even Troy’s twin brother already has a sense of advocacy. Hunter gives me daily reports about what Troy did in school, and is quick to tell us what Troy is saying when we can’t decipher his sometimes jumbled words. They say siblings of individuals with Down syndrome often lead lives of service and honor, and I can see that already in Hunter’s actions.

Troy leads by example. He’s always polite and congenial. When Troy walks into a room, everyone takes notice. He’s loud and boisterous. He wants to be heard, and he will. As will we!

I don’t think much about how life could have been with two typical boys, but when I do I realize we may not have been as close, strong, and empathetic as we are now.

How has Troy transformed our family? In countless, magical ways…that’s how!

Down Syndrome Blogs Sure to Inspire

October 30, 2017 by Courtney

In the beginning there was Google. It’s what every new mom turns to these days when they receive their child’s Down syndrome diagnosis. Like it or not, moms want information and Google provides it fast.

That’s why it’s so important that advocates like myself and the ones you’ll meet below win the Google Wars. Out-dated, misinformation about Down syndrome is rampant on Google. But slowly more and more blogs, as well as national Down syndrome organizations are putting an end to this misinformation. Some argue that the blogosphere is flooded with too many new moms sharing their journey with a child with Down syndrome. I say bring it on!

Read Related Story Here: Why I blog

It’s important that we advocate and share our personal stories, so that new moms and strangers of Down syndrome develop a new, better perspective of people living with Down syndrome. I started Inclusion Evolution to provide one more glimpse into the diverse world of Down syndrome. If I inspire one person, change one mind, then my goal is met. Other bloggers are doing the same, and below I share my top 10 favorite.

10 Most Inspiring Down Syndrome Blogs:

Cedar’s Story:

This has got to be the best diagnosis-centered blog on the web. One-year-old Cedar’s mom, Dawn, does a fabulous job sharing hundreds of diagnosis stories. The first place I turned when I learned about Troy’s diagnosis was the web, and I wish then that I would have had Cedar’s Story. Click here to read a diagnosis story from the Ivory Coast in Africa.

News Anchor to Homemaker:

Jillian Benfield’s raw emotion and eloquent words will have you coming back for more. I feel she and I could be best friends, and I don’t even know her. As I began reading her blog, I realized we had SO much in common. First, we both grew up in the same county in Florida. Second, we were both television journalist (albeit–she was much more successful), turn stay-at-home moms. But mostly it’s her first son, Anderson, who has Down syndrome that hooked me. Her “Mid-Week Moral” will cut you down deep, and bring you closer to her beautifully broken journey and your own.

The Sassy Southern Gal:

Almost every blog about Down syndrome has a baby or toddler in its starring role. But I’m hungry for sneak peeks into Troy’s future, so I’m always looking for reads on teens and adults with Down syndrome. 17-year-old Rachel fills me with such hope for Troy’s future. She’s the star of “The Sassy Southern Gal,” written by her mother and my advocacy mentor, Jawanda Mast. Jawanda’s blog shows Rachel’s journey of inclusion from her elementary school years to her present senior year. Rachel is an amazing self-advocate, and the blog show’s this transformation. Check it out here.

Grown Ups and Downs:

Another fabulous blog from a mother of an adult with Down syndrome. Brought to you by the co-author of “The Parents’ Guide to Down Syndrome,” Mardra Sikora inspires young moms to always dream big. Her son, Marcus, is also an author and amazing self-advocate. Check out his children’s book, “Black Day: A Monster Rock Band,” and all his adventures here.

A Day in the Life with Down Syndrome:

This is a new blog (like mine) with an extra special mission. To share families’ journey with Down syndrome. You can submit your own story and also learn about Down syndrome resources on and off social media. The author is Meriah, who first inspired me with a cross-disability blog now called Two Thirds of the Planet. Using her own disability as a compass, Meriah provides a unique glimpse into life with a disability.

This Life I Live:

The blogosphere is dominated by strong women sharing stories about their beautiful children with Down syndrome. It’s rare to find a father’s perspective, so Rory Feek’s blog is a rare gem. He writes it like an open diary about his wife who recently passed from cancer, his country music career, homestead farming, and his youngest daughter, Indy, who happens to rock an extra chromosome. Feek plan to homeschool Indy. Check out the one-room schoolhouse he recently built for her here.

Rory Feel with his late wife and daughter, Indy

Lexi Loo, Lily, Liam & Dylan Too:

If you want more from a blog than just Down syndrome talk, then Stephanie’s parenting and lifestyle blog is your jam. It has the perfect mix of decorating tips, stylish clothes and toys, as well as updates on her son Liam who has Down syndrome. Click here learn about her son’s journey.

Stephanie and Liam from “Lexi Loo, Lily, Liam, and Dylan Too”

No BS About DS:

It’s common to find a Down syndrome blog that’s heavy on emotion, but as Troy gets older I can’t help but want more. Enter “No BS About DS.” Co-Author, Sruthi Muralidharan does a good job of including human interest pieces, but also scientific posts. Check out their Ask the Expert post with Dr. Brian Skotko here or their post about Miralax for Constipation here.

Sruthi Muralidharan with her husband and son, Tejas

I Am River

River is a little boy with Down syndrome that lives between the United Kingdom and Tanzania. His mom and author of “I am River” blog, Hayley has an amazing way of sharing their unique story through words and pictures. I love this blog for it’s international flair and amazing prose. Check it out here.

Down Syndrome Diagnosis Network

My last pick for most inspiring Down syndrome blog comes from a volunteer-run organization and non-profit, Down Syndrome Diagnosis Network (DSDN). They have a great website with resources for moms with children from birth to age 5-years-old. But they also share personal stories on their blog from hundreds of parents across the United States. Check it out here.

What are your favorite blogs? Share in the comments section below!

United Airlines Crew Kicks Eagle Scout with Down Syndrome Out of Exit Row Without Explanation

October 17, 2017 by Courtney

United Airlines crew allegedly decided with one look that George Mason LIFE grad and Eagle Scout, Sean Cross, was not able to sit in an exit row seat on a recent flight. That’s because the 25-year-old has Down syndrome.

Instead of presuming competence, or at least asking Cross if he was willing to assist in an evacuation, the flight attendant refused to talk or even look at the paying passenger.

As relayed by Sean’s mother, Brenda Cross, a flight attendant demanded that the Cross family give up their seats immediately, without explanation. When Sean’s father, Patrick, asked why, they were told “He can’t sit in the exit row.” When the flight attendant was asked to speak directly to Sean, the flight attendant would not look at or speak to Sean. Subsequently, the Cross family were told they would be removed from the plane if they did not move immediately. This was done loudly and very publicly, in contradiction to United’s policy to speak quietly to passengers asked to move. The result was other passengers yelling at the family.

Read Related Post Here: How Loving Someone With a Visible Disability Forces You to Stand Out

Sean Cross and his family at the Eagle Scout Court of Honor

“They loudly announced that we had to change seats or be forcibly removed. When we asked them to talk to Sean they walked away. They then announced over the speaker that there would be a flight delay. Other passengers became irate and yelled “just move”. We moved. The pilot then got on the speaker to tell everyone to thank the volunteers who gave up their seats for us, to which people applauded, as if we were the cause of the problem. It was humiliating. It was discriminatory. This is a clear case of ableism on United’s part,” describes Brenda Cross, Sean’s mother.

What’s United Airlines’ policy on sitting in an exit row?

“The government requires any passengers seated in an exit row to be 15 years of age or older, be willing to assist in an evacuation and have no limitations that would prohibit their assistance. Before allowing passengers to travel in exit row seats, United must determine if they are able to take all required actions in the event of an emergency.”

There are 2 separate times when the airline is supposed to ask about exit row. First, as you scan your boarding pass at the gate. They did ask Sean there and he responded “yes”. They are supposed to ask again at the seats, which they never did. That’s when the Cross family were told to leave.

According to the Cross family, the flight crew at no time inquire as to whether or not Sean was capable of providing assistance to others in an evacuation. He was demanded to move simply based on the way he looks.

If they would have asked Sean they might have learned that he if fully capable: an Eagle Scout, George Mason LIFE graduate, employee who lives independently. Even if they didn’t think he was capable after speaking to him, at least they wouldn’t have assumed incompetence based solely on a visible disability.

The flight attendant that initiated the action later told United Airlines Representatives later that she based the decision on “previous interactions with a person with Down syndrome and it had nothing to do with Sean.”

Read Related Post Here: Ending Organ Transplantation Discrimination

The National Down Syndrome Congress has issued a letter to United Airlines CEO, Oscar Munoz, demanding an apology for the family and something even more impactful:

“We believe that United should review its diversity sensitivity training and, when re-tooled, send this flight crew. We would like to know what steps United will take to ensure that no other person with a disability is treated in this manner,” wrote NDSC Executive Director David Tolleson.

Here’s my call to action:

Tweet: @United ableism is not acceptable. Apologize to Sean Cross #UnacceptableUnitedAirlines #ShameOnYouUnited.

Ending Organ Transplantation Discrimination

October 16, 2017 by Courtney

Ellie is a sassy, spunky, and very smart soon-to-be 3-year-old who loves preschool. Looking at this thriving preschooler you may be shocked to know that just months ago she and her family were fighting for her life.

“Ellie was a hot mess even before she arrived. At 20-months pregnant we were told she would have a severe heart defect, and would likely need a heart transplant,” explains Ellie’s mom, Jackie. She went into heart failure at 15 days old, which escalated the need.

A day after Thanksgiving, at 2 1/2 months old, the Ohio doctors said it was worse than they first thought. Ellie would need three open-heart surgeries. They planned a heart cath to get a better idea of her current state. The doctors explained that her risk factors for surgery had increased, but they gave Ellie a trach and g-tube and planned for a surgery that would stop the pulmonary hyper tension.

Doctors told Ellie’s mom, Jackie, that this surgery had to be wildly successful or Ellie wouldn’t be eligible for other surgical interventions and would be left with the very broken heart she was born with. She’d have to live out what little was left of her life from there.

When her mom asked, “What about a heart transplant?” With the knowledge that it was likely the only other option that would let Ellie survive, the doctor replied “Nope, not for her.”

“Even if she qualified for the organ transplant waitlist, which she wouldn’t because she has Down syndrome, now she has other high risk factors that prohibits eligibility,” the doctor told Ellie’s mom. Jackie couldn’t believe it! What does Down syndrome have to do with a life-saving organ transplant?

Ellie’s family isn’t alone. A 2008 survey of organ transplant centers found that 85% consider neurodevelopmental status as a factor in determining eligibility.

The Americans with Disability Act protects against health care discrimination for individuals with disabilities, but enforcement is weak. That’s why I advocated for a state bill to address organ transplant waitlist discrimination in Ohio. My Ohio Representative, Niraj Antani, introduced the bill in August and Jackie Ward and I will be presenting proponent testimony in the Health Committee on Wednesday.

Here’s a copy of the bill.

“The possibility of a bill like this makes me tear up,” says Ellie’s mom, Jackie. “I was shocked that our doctor presented Down syndrome as a barrier for organ transplants. There are too many barriers for our kids already. We can handle difficulties in public and on the playground, but for a medical world that deems her life less valuable to save, that is unacceptable.”

Six states (Pennsylvania, Oregon, Maryland, California, New Jersey, and Massachusetts) have passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. Two more (Kansas and Delaware) currently have bills working their way through state legislatures.

In most states, there are no checks and balances on the decisions transplant centers make.

Without regulations, personal bias and preconceptions can play a role in life-or-death decisions. Often doctors cite two reasons for discrimination based solely on disability:

Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op support).
Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.

Jackie realizes her daughter had other risk factors that may play a role in eligibility, but Down syndrome shouldn’t be one. “We were devastated! We just couldn’t imagine going home and watching our Ellie die,” Jackie explains.

The family didn’t give up without a fight.

“We looked to the top cardio-thoracic surgeons in the United States to find a doctor that thought she was savable,” Jackie describes. They ended up at Boston Children’s Hospital. “They said they don’t see any reason why they couldn’t do a regular repair, and give her the new heart she deserved.”

After six hours in the operating room, Ellie’s mom Jackie says her 9-month-old baby came out looking pink for the first time in her entire life. “She recovered beautifully! For the first time in 9 months we could take a breath and see past today. She had a real future,” Jackie exclaims.

Next week is Ellie’s third birthday, and every year since her heart surgeries the family sends her medical team an update. Jackie wants them to know “Ellie loves openly and brings joy to each and every day.”

Message me if you want help advocating for similar legislation in your state.

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