Self-advocate helps all

by Guest Blogger on April 30, 2013

By Olivia Lepore

Nate at work

Learning that your child has been diagnosed with Down syndrome can be a challenging experience for many parents. At Boston Children’s Hospital, the Down Syndrome Program has found a way to give hope to both parents and children who come to the clinic—his name is Nate Simons. Simons is a valued 24-year-old member of the program’s staff, and like the children he interacts with at the clinic, he has Down syndrome.

Simons—who joined the team last fall—is the program’s second self-advocate, a two-year position funded by a generous gift to the hospital from a patient family. He was offered the role after successfully completing the same application process (cover letter, resume, and interview) as any other Boston Children’s employee.

Angela Lombardo, clinic coordinator, always felt there was something lacking from her team, like a puzzle with a missing piece, but when Nate joined the staff, she knew the puzzle was complete. “We are very grateful for the addition of the self-advocate position,” says Lombardo. “Nate—and his predecessor, Ben Majewski—have been remarkably successful matches.”

Simons works in the clinic two mornings each week, where he welcomes families upon their arrival to the clinic, administers paperwork to families, guides each family to their appropriate appointment room and performs various other tasks wherever the team needs him.

“I do what I can,” says Simons, who says his favorite part of the job is bringing toys to patients and watching the smiles light up their faces.

“He really helps patients and their parents,” says Lombardo. “The families who meet Nate are always so happy and relieved to see him when they return.”

Simons walks the 10 minutes to the hospital from his home in Brookline, where he lives independently in an apartment with his roommate and best friend. The two met while attending the Riverview School for students with learning disabilities in East Sandwich, Mass. Before that, Simons graduated from North Reading High School.

Simons is currently participating in an internship through the Jewish Vocational Services (JVS) “Transitions to Work” program, which teaches job skills to people with documented disabilities. His attendance will soon lead to a second job at CVS in the Boston area. When he’s not working, Simons enjoys playing basketball; he won first place in last year’s Special Olympics basketball event. He also runs track every Sunday through the Brookline Recreation Department.

All of Simons’ colleagues at Boston Children’s agree that his role as self-advocate is essential to the Down Syndrome Program, and Lombardo hopes it’s a position that the program can make permanent in the future. “We are really excited because there are a lot of programs that could follow this example and have self-advocates to represent their patient population,” says Lombardo. “It’s a win-win for everyone.”

 

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Dispelling myths about organ donation

by Tripp Underwood on April 29, 2013

April is Organ Donation Awareness Month, and Boston Children’s Hospital’s Pediatric Transplant Center would like to remind people just how important organ donation is to saving thousands of lives, including children. Right now 120,000 people are on the organ donation list, and 1,735 of those people are pediatric patients. (Of all these patients, 18 will die every day waiting for an organ to become available.)

Almost 2,000 young patients are on the organ donation list

Data shows that a majority of Americans are aware and supportive of organ donation, but only about 60 percent actually take the steps to become an organ donor. One of the biggest roadblocks to getting more people to register as organ donors is misinformation about the process. To help clear up any doubts our readers may have, we’ve created the following list of the more common myths about organ donation and explained why they are untrue.

Myth: Doctors don’t work as hard to save patients who are organ donors because there is such a big need for donated organs.

Truth: For all medical professionals, the first and most important goal is to treat and help their patients. What’s more, organ donation is organized and orchestrated through an impartial third party called an organ procurement and transplantation network (OPTN), so a medical team treating a patient has no knowledge or say in how a person’s organs are allocated. In many cases, while the doctors are trying to save a patient they will have no idea if he or she is eligible to be an organ donor.

Myth: I’ve heard of people who were declared dead that weren’t really gone. I don’t want to lose an organ if I still need it!

Truth: These types of stories make for great headlines, but cases of people being declared dead when they are actually alive are extremely rare in the United States. To be extra careful, the medical community has created specialized tests that are performed in order to confirm that a patient’s brain has, in fact, died. Only after the person has been declared dead can the process of organ donation begin. Full story »

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By Scott Howe

Following the tragedy in Boston on Marathon Monday, thousands of people asked, “what can I do to help?” For many, the answer was “give blood.”

In fact, the desire to donate in days after the marathon was so great that appointments at the Boston Children’s Blood Donor Center booked up quickly, and many eager donors were asked to schedule future appointments.

The generosity was truly remarkable and the donations very much needed. But it also spurred curiosity. More than once I heard someone ask, “How does the blood you donate go on to help others?”

The answer is a little more complex than you might expect,. For starters, donated blood can be used all at once, called whole blood, or separated into components which can go on to help people with different needs. Full story »

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The Cinnamon Challenge: when dares go viral

by Claire McCarthy on April 25, 2013

Dr. Claire McCarthy is a primary care physician and the Medical Communications Editor at Boston Children’s Hospital. Along with her blogs here on Thriving, you can find her at the Huffington Post and Boston.com. Follow her on Twitter @drClaire.

Parents, have you heard about the Cinnamon Challenge?

If not, here’s what it is: you swallow a tablespoonful of cinnamon in 60 seconds without drinking fluids. Preferably while being videotaped.

Sounds easy enough. But it isn’t. It turns out that cinnamon triggers a severe gag reflex. There are more than 50,000 YouTube videos of people trying to do it—and what they mostly show is people coughing out a cloud of brown dust and then gagging and vomiting.

Most of the time, after the coughing and gagging and vomiting subside, people are fine. But not always, which is why doctors want to get the word out. If in the midst of all that coughing and gagging some of the cinnamon gets into the lungs, it can cause wheezing, pneumonia or even serious lung damage.

What’s particularly worrisome is that more and more people (usually young adolescents) are “accepting” this challenge. According to a study just published in the journal Pediatrics, in just the first month of 2012 there were 178 calls to poison control centers related to the Cinnamon Challenge—up from 51 in all of 2011. Full story »

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One of the most frightening aspects of Monday’s bombings in Boston was the unexpected shock. Now, as the city begins to heal, we’re slowly beginning to process everything that’s happened, and turning to our neighbors for support.

The loss of life and physical injuries are tragic. The damage to area businesses is costly. But the impact on our sense of safety is harder to quantify. How can we ever truly protect ourselves from a phantom enemy we can’t see or understand the motives of? Worse still, how can we protect our family from it?

“Random attacks like Monday’s bombings can be very difficult to process emotionally because there is no way to truly prepare for them. It can make anyone feel helpless,” says Roslyn Murov, MD, Director of Outpatient Psychiatry Services at Boston Children’s Hospital. “When people feel like there is nothing they can do to make things better, it’s a very upsetting and powerful emotion.” Full story »

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Young people’s reaction to the Boston Marathon bombings

by Tripp Underwood on April 17, 2013

As Boston begins the healing process after Monday’s violence, many of us will turn to each other. Yesterday, Thriving shared advice from psychiatry experts on how to help children deal with fears they may be experiencing. Today, we will share a different perspective: real-life accounts from two young Bostonians.

Elan and Erica, senior peer leaders for Boston Children’s Center for Young Women’s Health and the Young Men’s Health initiative, blog for TeenSpeak, a website maintained by Boston Children’s Center’s for Young Women’s Health and the Young Men’s Health Initiative; a forum where teens, young adults, youth advisors, mentors and health care providers write about real life issues. Like everywhere else in the city, the talk at TeenSpeak yesterday focused on Monday’s bombings. Here’s what the two young bloggers had to say about their own experiences and reactions to the violence at the Boston Marathon:

Full story »

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Helping children process the Boston Marathon bombings

by Tripp Underwood on April 16, 2013

Pictures taken at the scene flickr/hahatango

As a life-long Bostonian I’m having a difficult time processing the range of emotions I’m feeling in the wake of yesterday’s tragedy.

Like most people I’m angry, frightened and saddened, all at once.

 

But more than anything I’m confused. Why would someone do this?

And if we as adults are having a hard time coming to terms with yesterday’s events, what can we do to comfort our children?

“These bombings will evoke many emotions in all of us, but it might be particularly hard for children to process, so they will look to the adults in their lives for answers,” says Roslyn Murov, MD, Director of Outpatient Psychiatry Services at Boston Children’s Hospital. “Those answers will be different for each child, but the most important thing any parent can do in a time like this is reassure their children that as a mother or father you will do everything in your power to keep them safe.” Full story »

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Talking to children after tragedy

by Claire McCarthy on April 15, 2013

Our thoughts and prayers are with all of you that have been affected by the devastating tragedy here in Boston. It is beyond comprehension.

As the news unfolds and we all try to make sure that our loved ones and friends are okay, here are some suggestions for parents (adapted from our advice after the Connecticut shootings):

  • Tell your children what happened–it’s important that they hear it from you. Do it in a broad-strokes way (“There were explosions at the marathon and some people were hurt”)
  • Answer their questions simply and honestly (again, in a broad-strokes way–details aren’t necessary)
  • Limit their exposure to media. It’s hard not to end up glued to the television, especially as events are unfolding, but it may be very upsetting to children. Use your laptop or smart phone instead.
  • Make sure they know that events like these are very rare. It’s usually very safe to be in public places.
  • Let them know that you, and other helping adults, are working all the time to keep them safe. Talk about some of the ways you do this.
  • Understand that they, like you, may need time to process what has happened. They may be upset but not even know why, so be patient if they act out in unusual ways.
  • If your child is very sad or anxious and nothing you are doing is helping, call your doctor.
  • Give lots of extra hugs. They will help you, too.

These resources, which we suggested at the time of the Sandy Hook shooting, may be helpful:

From Boston Children’s Hospital: Coping with Frightening Events

The American Academy of Child and Adolescent Psychiatry has the following resources:

Talking with Kids About News, from PBS Parents. They also have tips on communication strategies.

How to Talk to Kids About Tragedies in the Media, from the Child Development Institute

Helping Children Cope with Tragedy-Related Anxiety, from Mental Health America

The American Academy of Pediatrics has a number of resources on their healthychildren.org website

 

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