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To the Med Students Who Will Deliver an Unexpected Down Syndrome Diagnosis One Day

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Dear Medical Students:

Thank you for choosing a noble profession and for being motivated by a desire to help people. At times you may wonder why you’re studying so hard, putting in long hours and putting yourself into tremendous debt. It’s because you want to make a difference, and you surely will.

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You’ve spent hours on clinical training, learned about countless conditions and read thousands of pages that will help you solve medical mysteries. But there’s so much packed into the medical school curriculum that an hour-long lecture and a single patient lab might be the extent of “delivery of diagnosis” classroom education you receive.

At some point, you will have to deliver a difficult or unexpected diagnosis. Patients will listen to your words as you deliver them, so use them carefully. What you may not have learned is that your words have incredible power, and for some, your words will have impact for the rest of their lives.

On November 8, 2010, I heard words that would forever impact me. We suspect your baby has Down syndrome.

On the surface, the doctor, a pediatrician, delivered the diagnosis in a way that would almost have been like a case study in a textbook. Her tone was soothing. She was matter of fact. She provided us with what evidence they had so far (creases on both palms, extra space between my baby’s first and second toes, low muscle tone). She told us that Down syndrome happens when someone has three copies of chromosome 21. She told us about heart defects, elevated risk for leukemia, thyroid conditions and cognitive and physical delays. She used words that were not too difficult for most patients to understand. She asked my husband and me if we had any questions.

If that had been a patient lab, she would have scored well. She did all she was supposed to do.

She devastated me.

Yes, part of it was the unexpected diagnosis, but part of it was what was left unsaid, and that part would have helped so much. And now, every year around my son’s birthday, as I’m preparing to celebrate him, it’s bittersweet because I remember the intense grief that accompanied his birth, his diagnosis.

You see, future doctors, delivering a diagnosis is not merely about providing a list of symptoms and a litany of potential problems in a soothing tone without medical jargon. It’s about painting a more complete picture. In that diagnosis moment, my dreams changed, and the picture was out of focus.

To nail the diagnosis experience, the doctor could have started with the words, “Congratulations! You have an amazing baby boy.” Because I did not hear those words, I remembered being confused later when I heard it from one of the nurses. I wondered whether congratulations was something you said to someone who receives an unexpected diagnosis. I know now that of course you say it, and you say it enthusiastically, because a baby is first a baby.

Birth photo of baby boy

To continue with the positive experience, she could have provided some resources. We started with Google. If you’ve ever tried using Google to find medical information, you will see that the volume of information is overwhelming, and much of it has little educational value. The doctor could have shared with us links to the websites for the National Down Syndrome Congress and the National Down Syndrome Society. She could have provided the names of some books that would have been helpful, like “Babies with Down Syndrome.” She also could have shared the article “Health Supervision for Children With Down Syndrome“(this is the most recent update) so we could read it and provide it to our pediatrician.

The physician could have referred us to the two Down syndrome centers in our region, could have connected us with a hospital social worker (we asked to see one on our own), could have given us information on how to connect with the county’s Early Intervention services, and could have connected with our county’s Down syndrome group. If she didn’t know that information, the National Down Syndrome Congress has a link one can use to find a local Down syndrome group.

Finally, to really nail the diagnosis, the physician could also have had educated us on the possibilities. She could have told us that though there were things that would be difficult for our son, some things might come easily. She could have told us that if we have high but reasonable expectations, our son would rise to them. She could have told us that people with Down syndrome may live on their own, drive cars and go to college. The More Alike Than Different campaign of the National Down Syndrome Congress illustrates these points perfectly.

Future doctors, you will soon be seen as a figure of authority. Your patients will wait to hear your words with a mixture of anticipation and fear, and your words can affect them for a lifetime. What you share during a diagnosis can help move a person beyond that initial shock and grief, can help them find the appropriate resources and can help them get to the place I am now — thankful for my smart, sweet, funny, tech-savvy son
who has Down syndrome.

If you ever find yourself in the position of delivering an unexpected diagnosis of Down syndrome, I hope choose your words carefully and give plenty of information and resources.

Sincerely,
Julie Gerhart-Rothholz

Side by side photos of baby and little boy

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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Cop Helps Teen With Down Syndrome Feel Comfortable With Law Enforcement

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Mallory Hamilton’s 19-year-old daughter Harley has Down syndrome and autism, and after an incident at a local movie theater, Hamilton began to wonder what might have happened if the situation escalated and police officers became involved.

Harley Hamilton was at the Tikahtnu Regal Cinemas in Anchorage, Alaska, with her aide, and after she became stressed, theater staffers grew concerned about her behavior and threatened to call the police if she was not removed, according to Alaska Dispatch News (ADN). (Regal Cinemas has not responded to requests for comment from The Mighty regarding the incident.)

Hamilton’s aide helped her out of the theater, but the experienced rattled the teen — and her mother. “You just don’t have any idea as a parent what is going to happen. It’s your worst nightmare,” Mallory Hamilton told ADN.

Fortunately Anchorage has the Crisis Intervention Team, a volunteer training program that helps educate its officers on how to handle individuals with special needs. Officer Matt Fraize, whose daughter also has Down syndrome, is a member of that team, and he and his wife Angie, who is also a cop, had an idea when Hamilton approached them asking for help. Matt Fraize would meet with Harley Hamilton for coffee at Sagaya City Market in Anchorage, and hopefully establish a positive outlook on law enforcement officials.

LOREN HOLMES / Alaska Dispatch News Harley Hamilton, a senior at West High living with Down syndrome and autism, meets with Anchorage police officer Matt Fraize at Sagaya City Market on Wednesday, Feb. 24, 2016. Hamilton’s mother, Mallory, wanted Harley to meet a police officer so she would learn to trust them in the event they were called to a situation where they would have to interact with her.
LOREN HOLMES / Alaska Dispatch News

Hamilton has now had two meetings with Fraize, who told The Mighty he’s already seen a positive result.

“Harley asked me to sit right next to her, which her mom told me is very rare,” Fraize told The Mighty. “Harley was really excited to see my police car and she jumped right in the back seat.”

“I see these positive interactions with Harley and others in this community as paving the way for a more accepting and tolerant future for them,” Fraize said.

“I could not have asked for a better experience,” Mallory Hamilton told ADN. “They took the time and gave us the opportunity for peace of mind, which for me is huge.”

Michelle Slape, executive director at International Down Syndrome Coalition (IDSC), told The Mighty in an email:

“With the growing number of adults with Down syndrome living independently, working within the community and having independence, there is a great need for those outside of the Down syndrome community to understand the behaviors and mannerisms of individuals with Down syndrome (and other disabilities). What may be perceived as an aggressive behavior may in fact be a coping behavior when in a stressful situation. As parents, our job is to not only guide our children into becoming independent adults, but to help educate those around them of what Down syndrome is and isn’t. Old stereotypes of Down syndrome are constantly being broken. It is now a matter of helping to educate our communities.

I hope that eventually the Crisis Intervention Team program finds its way to every state.  Not only will it benefit the disability community but society overall. We can only hope that others will follow the lead of the volunteer officers and learn to have compassion for those with disabilities.”

LOREN HOLMES / Alaska Dispatch News Harley Hamilton, a senior at West High living with Down syndrome and autism, gives Anchorage police officer Matt Fraize a side hug at Sagaya City Market on Wednesday, Feb. 24, 2016. Watching at left is DeVon Brentlinger, one of Harley’s caregivers.
LOREN HOLMES / Alaska Dispatch News

To read the full story, visit ADN’s website and Facebook page


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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The Actor With Down Syndrome the Oscars Won’t Recognize This Weekend, but Should

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Everyone in the advocacy community likely remembers and cringes at these words from the 2008 movie “Tropic Thunder.” It’s an exchange between Robert Downey Jr.’s character, Kirk Lazarus, and Ben Stiller’s, Tugg Speedman. 

Editor’s note: The following excerpt contains offensive language.

Kirk Lazarus: Everybody knows you never go full retard.

Tugg Speedman: What do you mean?

Kirk Lazarus: Check it out. Dustin Hoffman, “Rain Man,” look retarded, act retarded, not retarded. Counted toothpicks, cheated cards. Autistic, sho’. Not retarded. You know, Tom Hanks, “Forrest Gump.” Slow, yes. Retarded, maybe. Braces on his legs. But he charmed the pants off Nixon and won a ping-pong competition. That ain’t retarded. Peter Sellers, “Being There.” Infantile, yes. Retarded, no. You went full retard, man. Never go full retard. You don’t buy that? Ask Sean Penn, 2001, “I Am Sam.” Remember? Went full retard, went home empty handed…”

While we cringe, many laughed. But what he said is sadly not too far from the truth. Just last year, the winners of best actor and best actress both portrayed characters with disabilities and illness. They are lauded for their courage. They are lauded for their transformation. While we also thought their performances were incredible, isn’t it time we applaud more performances like Marlee Matlin’s? She is the first and only deaf actor to win an Academy Award.

man at grocery store
David. (Image credit: Tom LeGoff)

No academy, no jury has decided to award David DeSanctis an award, whether it be best supporting actor or breakout performance. But our team of producers and filmmakers wants to acknowledge his performance and accomplishments. Our movie “Where Hope Grows” was David’s first film role. He went toe-to-toe with actors with decades of experience. He memorized 130 lines. This while David is a person with Down syndrome — a group whose capabilities many people doubt. Isn’t this an achievement bigger than pretending to have a lisp or gaining weight for a role? He’s inspired literally hundreds of thousands, if not millions. After our world premiere, a gentlemen stood up and said, “Seeing this movie makes me think my 3-year-old with Down syndrome is capable of so much more than I ever thought before.” How many performances have inspired others to change their lives as well as the live of others, like David’s performance? One family even wrote us to say they were now going to adopt a child with Down syndrome after seeing our film, directly changing the lives of that family and the child. All inspired by a little film. How many of the best picture nominees will be able to say that?

People are quick to share and make viral stories of a young man with Down syndrome making a shot in basketball or becoming homecoming king, while they’re not as quick to recognize and applaud stories like David’s, or people with intellectual and developmental disabilities (IDDs) opening restaurants or running for office. Most people assume that “Where Hope Grows” must be a documentary because it has a person with Down syndrome. In fact in making the film, many asked us how we would get a person to “act” like they had Down syndrome. This was asked a lot. This is why there is so much work to do.

We are not bitter. We know, like many other groups that have been overlooked by the Academy, society and others over the years, our time will come. We as filmmakers have to do better when it comes to our casting choices. We were very proud when so many people said to us after seeing our film, “Wait, this film isn’t about Down syndrome.” Exactly — just like a person, an actor like David DeSanctis, is way more than just Down syndrome. The making of this movie has not only changed the lives of many people who viewed it, but also the people who made it. We are more than producers, writers, directors, investors who believed in a project the industry said not to make. We are advocates.

So, while David won’t be on stage this weekend, we hope his performance will be added down the line to the list of great actors with Down syndrome in the past, present and into the future. Let’s resolve to live in and create a world of inclusion and respect, both on and off the red carpet.

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David laughing. (Image credit: Tom LeGoff)

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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To the Mom Who Just Got a Down Syndrome Diagnosis, From Another Mom With Love

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Dear mom who just got a Down syndrome diagnosis,

First, welcome to the biggest “family” I’ve ever been part of. We’re here, all of us, to help. Some are further along the journey than others, but all of us can offer you help on your journey. The Down syndrome community is expansive in their views and approaches.

You likely heard your babe has an extra chromosome from a pediatrician, genetic counselor or your obstetrician. I hope they were gentle. I hope they were positive. I hope they gave you up-to-date information. And I hope they listened to you. Maybe they gave you local contacts in the Down syndrome community, or maybe they only gave you medical information. I want you to know that both are valuable. It’s OK if you aren’t ready to meet other families yet. It’s OK if you immerse yourself in events like the Buddy Walk. This is your journey, and it’s unique to you.

As you sit there looking at a profile in an ultrasound or holding your bundle of joy, please know you hold the keys to everything they will need. Your love will shine through with each medical decision, each push for therapies and each gentle cuddle you give.

It’s OK to be lost sometimes. It’s OK not to have all the answers. Sometimes you will be so overwhelmed, you can’t think about therapy, or surgery, or being brave. And that’s OK. Your baby doesn’t need for you to have all the answers. Or even to keep a brave face all the time. All your baby needs from you is love.

Whether you advocate loudly from the rooftops or quietly behind your keyboard, you will make a difference.

As you hold your baby or rub your growing baby bump, please know you are enough.

Love,
A mom further along this path

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Follow this journey on Happily Everly After.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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Play Examines Life of Man With Down Syndrome After Losing a Parent

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Actor Nathan Bessell starred in the hit 2010 theatrical production, “Up Down Boy,” which chronicled the life of Matty Butler, a young man with Down syndrome. Now Bessell and the rest of the production team are ready to premiere the sequel, “Up Down Man,” which examines Butler’s life 10 years later, following the death of his mother.

Sue Shields, Bessell’s mother, wrote the first play, and director Brendan Murray is behind the sequel, a “funny, provocative [and] moving [show that] could change the way you see the world,” according to the Myrtle Theatre Company’s website.

The Myrtle Theatre Company teamed up with the Salisbury Playhouse in England to present the production, which is told from Matty’s point of view using a combination of dialogue, original music and dance, according to the Salisbury Journal. According to a synopsis on the theater company’s website, “’Up Down Man’ asks the question that faces every parent of an adult with a learning disability… What will happen when I’m not here?”

 

Heather Williams stars as Matty’s mother Odette, and she chatted with the Salisbury Journal about the message behind it:

Matty has lost the significant person in his life but it then gives way for what now, what does he want, what does the family want for him, what did his mother want and how do all those concepts differ. People really expressed an interest in knowing what happened next. There were a lot of families that have children or adults with Down syndrome that came and saw it and it spoke to them. It spoke to the general public and really changed their perceptions.

 

Nathan Bessell and Vic Llewellyn in rehearsals for Up Down Man at Salisbury Playhouse (Credit Laura Jane Dale)

Posted by Salisbury Playhouse – Official on Friday, February 12, 2016

Nathan Bessell works with Choreographer and Dancer Bryn Thomas. UP DOWN MAN runs in The Salberg at Salisbury Playhouse from 24th February to 12th March 2016. Photos by Laura Jane Dale.

Posted by Salisbury Playhouse – Official on Tuesday, February 16, 2016

 

In a video posted on Myrtle Theatre Company’s Facebook page, Williams explains that Bessell was involved in the development process from start to finish. “Nathan showed us through dance and through speech and through directing a few bits and pieces the kind of themes he’d like in the play,” she said.

“Up Down Man” is running through March 12. For ticketing information visit the Salisbury Playhouse’s website.


 

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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16 Things Parents of Children With Down Syndrome Want Their Teachers to Know

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Whether it’s the first day of school or halfway through the school year, a parent’s hopes for his or her child are often the same — I hope he has a great day today. I hope she loves what she learns. A pivotal part of this is the child’s teacher, the person entrusted to guide, nurture and help make those hopes a reality. And one of the first steps toward this is a better understanding of the child being taught.

We teamed up with Special Miracles to ask parents of children with Down syndrome what they wish their teachers knew — what would help them better understand their kids and all of the hopes, expectations and great potential they bring to the classroom.

These are just some of their answers:

1. “My son will be starting kindergarten in the fall, and I hope they push him in a positive manner and allow him to grow and feel special not because he has Down syndrome, but because he is just amazing!” — Renee Raffino

2. “There is no limit on what they can do. Children with Down syndrome are like any other child — unique in their own way.” — Cindy Oliver Hill

There is no limit on what they can do. Children with Down syndrome are like any other child -- unique in their own way.

3. “Don’t finish her sentences. It takes a moment to go from thought to words. Give her just a second to get the words out.” — Bret Overholtzer

4. “Always have a positive attitude. If you have doubts with my child, then he will doubt himself.” — Laura Maher

5. “Don’t assume he cannot learn or do something. Realize his potential!” — Mickele Costello-Yates

Don't assume he cannot learn or do something. Realize his potential!

6. “I wish his teacher knew how much it means to me to have someone take him and guide him, for the majority of his waking hours, in a way I know and trust. I wish she knew the peace she has given me, just knowing he is safe, loved and understood for those hours.” — Jennifer Her Many Horses

7. “Remember he is loved, as all children should be.” — Sue Shorley

8. “Help them to reach beyond even your expectation. Always believe in them. I do.” — Kristen Hershey

9. “We don’t all fit in the box. Some of us are perfectly perfect in an imperfect world.” — Jo Baca

We don't all fit in the box. Some of us are perfectly perfect in an imperfect world.

10. “Just because she won’t do something doesn’t mean she can’t. You have to find the right way to motivate her.” — Amy Yoshie

11. “My son with Down syndrome has hopes and dreams for his future, just like his high school peers.” — Pam Trimble Ginet

12. “I wish they knew my son is a person, not a statistic… He is a handsome young man first and foremost.” — Sharon Mthunzi

13. “I hope my grandson’s teachers know how very capable he is in so many ways… I hope they let him try things on his own. Not to mention he’s got it all figured out! Watch out world!” — Pat Miles O’Keefe

14. “I want my son’s teachers to have patience, gentleness and understanding with him. He understands more than you think he does. He learns by example and observation. Praise will encourage him to do his best when he does accomplish the task he is given. He loves to be busy, and he feels proudest when he is helping out. He enjoys being read to. Most of all, he just wants to have the same opportunities as other children his age and loves to be included in things just like any other child… You will be amazed at what he can and will do in the future with the right guidance and support!” — Liza Jeremy Kane

15. “Open your mind. Don’t underestimate him. Don’t limit him. Assume nothing. He has more to teach you than you could ever have to teach him.” — Maxine Sinda Napal

16. “Give her wings and help her fly.” – Erica Ramsey

Give her wings and help her fly.

*Some responses have been edited and shortened for brevity and clarity.

What would you add to this list? Share with us in the comment section below.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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