Monday, February 1, 2016

Conversations with Counselors


Canoeing at Mt. Hood Kiwanis Camp
Photo Credit: Mt. Hood Kiwanis Camp

Last summer, we went on site to ask some counselors why they had chosen to take the Mt. Hood Kiwanis Camp Capstone.  We got a lot of different answers!  Students with diverse majors and interests choose the MHKC Capstone, and a wide variety of personalities thrive here.

Catarina was the first counselor we spoke with.  She heard about the capstone through word of mouth.  "A lot of people were saying that it's the best thing, and it's the most, like, beautiful experience you could get, and it's really life-changing," she tells us.  "And so far it's been very life-changing for me."

Chad, another counselor, also heard about the capstone through word of mouth, though in this case it was from a little closer to home.  "My older brother took the capstone ten years ago, and he recommended it," Chad tells us.  "We both are not involved with special education or education in general.  He's computer systems security, and I'm going into the medical field, but we both felt that it was the best use of our time to give back to the community."

People in the MHKC Capstone come from a variety of backgrounds, from those with no prior experience dealing with people who have different abilities to those who have helped care for friends or family members for years.  Some want to make special education their lifelong vocation; others, like Chad, just want to spend a part of their summer giving back to the community.

And the course can be used for more than just PSU's senior capstone graduation requirement.  Grace, a Child and Family Studies major, is using it as a practicum for her major.  "I was really interested in this because I hadn't had much experience with different abilities," she tells us.  "I was nervous about coming, but it's been a really, really great experience, and I've learned a lot."

When asked if they were glad they'd made the decision to come to camp, these counselors gave us responses that were universally positive.

"I'm very glad I came," Catarina says.  "I'm just overjoyed."

"Yes, definitely I'm very glad.  And it's flown by!"  Grace says, smiling.  "It's been, like, a long two weeks, but it's gone by really quick.  I can't believe it's almost over."

Learn more about the Mt. Hood Kiwanis Camp Capstone on Portland State University's website here, and feel free to ask us any questions in the comments here or on Facebook.

Special thanks to counselors Catarina, Chad, and Grace, and to faculty member Carolyn Bradley, who gave us a tour of the camp last summer.

Monday, January 25, 2016

Eight-year-old triathlete with cerebral palsy wins prestigious Rollason award

Bailey Matthews lives in the town of Doncaster in South Yorkshire, England.  It was in North Yorkshire that he successfully completed a children's triathlon event last July, swimming for 100 meters, riding a bicycle for 4 kilometers, and running for 1.3 kilometers.  It would be an impressive achievement for any eight-year-old, but it's especially extraordinary for Bailey, who has cerebral palsy.

Video of the end of the triathlon shows Bailey discarding his walking frame, choosing instead to run the last few feet to the finish line on his own.  He falls down twice, but picks himself up and continues undaunted.  Spectators cheer him on all the way.

Footage of the event went viral, attracting more than 30 million views.  It caught the attention of the British Broadcasting Corporation, which presented Bailey with its Helen Rollason award last December.  Named after pioneering female sports journalist Helen Rollason, the award is given by the BBC to recognize "outstanding achievement in the face of adversity."  Past winners include competitors in the Invictus Games, as well as sitting volleyball player Martine Wright.

Bailey Matthews was presented with the award by two time Olympic gold medalist Rebecca Adlington and singer Niall Horan of the band One Direction.  Watch the ceremony and Bailey's acceptance speech below:



As for what Bailey has planned for the future, he told the arena that he wants to compete in five more triathlons next.

You can read more about Bailey Matthews, from the BBC, in The Guardian, and in The Yorkshire Post.

Monday, January 18, 2016

Engineering students design 3D-printed prosthetic arm for 6-year-old

Young kindergartner Alex Pring was born without most of his right arm.  He tries to do the same activities that children with all of their limbs do, though he's said that it's getting harder as he grows up. 

But recently his mother, Alyson Pring, found mechanical engineering doctoral student Albert Manero.  Manero is part of an online volunteer network called e-NABLE, which designs and creates prosthetics for people who do not have hands.  Part of the reason Manero joined was because he had a friend when he was younger who had missing fingers.

When Manero heard about Alex's need for a prosthetic, he got together a team (most of whom were fellow students at the University of Central Florida) to do something about it.  In their free time, the team (see a full list of members here) designed and built an arm for Alex.  And they did it using a 3D printer.

The team tested different ideas for seven weeks.  It was their first design for someone who did not already have a functioning elbow, which made their work especially challenging.  Additionally, children's prosthetics are harder to make in general, said Manero, because they are so much smaller than adult versions.  What the team ultimately came up with was a highly complex apparatus containing a muscle sensor, which allows Alex to open and close his new hand by flexing his bicep.  See it in action here:



Because the arm was made with widely available components, other people who own a 3D printer can potentially print and assemble their own prosthetics at home.  The engineers intend to make the design and building instructions for this new prosthetic available on the Internet for free, after a few of the kinks are worked out. Plans for many other hand prosthetics that e-NABLE has designed are already available here on e-NABLE's website.

With the help of some donated supplies, Manero's team managed to manufacture the arm for less than $350.  The potential for a low price tag could be of particular interest to low-income families, since most insurance companies will not pay for children's prosthetics due to how often they need to be replaced as a child grows.

Manero says he believes 3D printing is revolutionizing the world in many ways, and it doesn't have to stop at making only young people's lives better.  He says there's no reason why this approach to creating prosthetics couldn't work with adults as well.

As for Alex, the first thing he did with his new arm was hug his mother.

You can read more about Alex Pring and the making of his 3D arm from the University of Central Florida, the Orlando Sentinel, and the Huffington Post.

Monday, January 11, 2016

14-year-old basketball team manager on the autism spectrum sinks shot

William Lipka is the 14-year-old manager of the basketball team at Elm Place Middle School in Highland Park, Illinois.  Like his twin brother Eamon, he is on the autism spectrum.  But after a little help from his coaches and teammates a few weeks ago, he scored some memorable points in a basketball game—one that he'd only been informed he would play in a few hours previously.

Some years before, assistant basketball coach Trevor Kahn and fellow coach John Whitehead had both discussed getting Lipka involved in a school activity.  Lipka already loved basketball, so they made him the manager for the seventh and eighth grade teams.

As manager, his duties include filling basketballs with air and cleaning up the court, but he also acts almost like another coach himself.  Kahn notes that Lipka will help repeat the coach's advice to the team during practice, and he takes his role very seriously.  But he never got to actually play in a game himself.  At least, not until last December.

That's when the two coaches made the short-notice decision to put Lipka in a game, and it was in this game that Lipka made his momentous goal.  It didn't happen immediately; about seven previous chances to get a shot didn't go quite as well.  But then Lipka hit a 10 foot baseline jumper.  The crowd went wild, erupting into cheers.  Watch Lipka make the shot and see the reaction below:


He had some help from his teammates, too; they willingly gave up scoring opportunities and playing time to give Lipka an experience they knew he might never get the chance to have again.  Coach John Whitehead commended his players for showing class, sportsmanship, and camaraderie, and said that they made him proud to be a coach.

As for Lipka, when asked what it feels like when he's holding the ball, he had one simple response: he says it feels like they're going to win.

You can learn more about William Lipka from ABC 7, from ChicagoNow.com, and from USA Today.

Monday, January 4, 2016

Portland woman with myopathy organizes sock drive for young hospital patients

Andie Proskus is no stranger to spending time in the hospital.  Diagnosed in high school with myopathy, a neuromuscular disease that left her unable to hold herself upright, she's spent many hours undergoing surgeries and tests.  After a nine-hour surgery during her junior year of high school and the resulting long hospital stay, she truly realized how isolating such events can be.

Since then, she has been working to improve the lives of young people who have to stay in the hospital, a project which this year took the form of starting a sock drive.  Proskus says the idea came to her a few months ago, and she originally hoped to collect 500 pairs of socks.  She ended up with 1,930 pairs.  After she put out a call on social media, donations poured in from as far away as Australia.



This isn't Proskus's first experience doing philanthropic work.  In 2012, the then 19-year-old began putting together care packages for children who had to have extended hospital stays, calling the packages "Smiles from Andie" boxes.  It was a learning process, researching what kinds of boxes and toys would be best—Doernbecher Children's Hospital told her not to include anything that might be a choking hazard, and also that including too many toys might be overwhelming.  Proskus spent hours finding the right toys, picking out warm and colorful socks to include, and carefully decorating each package.  She couldn't usually deliver the boxes herself, as she is not a registered nonprofit organization, but the hospital staff made sure the care packages were given to the children.

Proskus's disease has limited her mobility, but she hasn't let it stop her from doing physical activities either.  She's crossed the finish line in ten local races, and these days she still takes part in races with the help of volunteers who push her in a chair.  Last summer, she completed a major walking goal: 2.5 miles, all upward, on Terwilliger Hill.  She's said that when she's at the waterfront, walking or being pushed in her chair, that's when she's happiest and her disability disappears.

This December, Proskus delivered 500 pairs of socks to children at Doernbecher Children's Hospital, with plans to visit more hospitals to make similar deliveries.  Her disease is a progressive one, and Doernbecher Child Life Specialist Sandy Westfall noted that Proskus's being well enough to come and make the deliveries is uplifting for both her and the children.

You can find out more about Andie Proskus from KGW.com, OregonLive, and Koin.com, and you can keep up with her on her Facebook page.

Tuesday, December 15, 2015

Intelligent Lives

Award-winning filmmaker Dan Habib is turning his attention to the world of intellectual disability in his new film, a documentary with the working title of Intelligent Lives.  The film will explore ways in which standard ideas of intelligence unfairly limit individuals with intellectual disabilities, as well as ways in which these individuals are contributing to society in fields including work and higher education.

According to the project's website, about 6.5 million Americans are identified as having an intellectual disability.  As adults only 24% of these people are employed, and as students a mere 17% are included in classrooms with non-disabled peers.  One of the film's focuses will be why new ideas of intelligence are starting to help break down these classroom separations.

Habib isn't new to the world of documentaries about educational and disability issues.  His past credits include Who Cares About Kelsey?, an Emmy-nominated film about students with emotional and behavioral challenges, and Including Samuel, another Emmy-nominated film that focuses on Habib's own son who has cerebral palsy.  In 2014, Habib was appointed by President Barack Obama to the President's Committee for People with Intellectual Disabilities.


A trailer for Dan Habib's film Including Samuel.  View a version of the trailer with audio descriptions of the visuals here.

The filmmaker also has a Portland connection: in summer 2015, the University of Michigan Alumni Association reported that he once worked for a daily newspaper here before becoming a staff photographer (and later a photo editor) at the Concord Monitor in New Hampshire.  These days, he's a filmmaker and project director at the University of New Hampshire’s Institute on Disability.

This new film on intellectual disability will also follow the stories of individuals, as well as investigating the historical treatment of people who have intellectual disabilities.  A central focus of the film will be Micah Fialka-Feldman, a staff member, student, and teaching assistant at Syracuse University.  Although Fialka-Feldman scores a 40 on a traditional IQ test, the film will show how he is still able to have a meaningful life and make valuable contributions to society.  Interviews with leaders in the fields of neuroscience, education, business and more will also be included in the film, and the value of so-called "intelligence testing" will be called into question.  The documentary will be narrated by Academy Award winning actor Chris Cooper, and is slated to be completed by the fall of 2017.

You can learn more about the Intelligent Lives project on the Intelligent Lives website, and you can find out more about Dan Habib and his past projects on Syracuse University's website, from the University of Michigan's Alumni Association, and in Education Weekly.

Monday, December 7, 2015

Spotlight: Jonathan Stoklosa, a powerlifter who has Down syndrome

Jonathan Stoklosa can bench-press over 400 pounds.  He competes in powerlifting matches, and frequently places in the top three.  His parents say that he'll sometimes get strange looks at the gym or in competition, but those looks fade quickly once he starts lifting several hundred pounds.

Stoklosa was born with Down syndrome, but his parents Liz and Hank did not raise him any differently than they did their other boys.  The couple says they simply didn't expect anything less from him than from their two other sons, both of whom are adults now as well.  Though Stoklosa is now admired by many, Hank Stoklosa admits that wasn't exactly what he and and his wife were expecting when they were first told that their son had Down syndrome, and he says that Jonathan changed their lives.



Jonathan Stoklosa has a day job, too: a bag boy at a grocery store.  He collects carts left in the parking lot and gives out stickers to the kids.  Despite his immense strength, he's said to have a gentle touch at work.  A quiet man, interviewers have noted that he prefers to let his parents do the talking, though he's been know to yell and pound his chest after a successful lift.

Stoklosa started weightlifting when he was 12 years old.  A year later he could bench-press 185 pounds, and by the time he was 16 years old, that number had risen to 225 pounds.  But the road hasn't always been an easy one; Stoklosa ruptured his ACL in 2007.  His father notes that technique is a critical focus in Stoklosa's trainings, and greater attention is also put on injury prevention now.  Lately the gains in how much weight Stoklosa can lift are made slowly, increasing by about 5 pounds per year.

Stoklosa has competed successfully in the Special Olympics, and in more recent years, he's also competed in regular competitions that are not designed for people with different abilities.  His trainer, Brandon McGovern, has said that Stoklosa is a competitor and strives to be as good as he can be.  A few years ago Stoklosa bench-pressed his personal best at the time: 402.5 pounds, enough to win him third place in his age division in a powerlifting competition in upstate New York.  At the same competition he also received a "Most Inspirational" award, given to him through unanimous choice by fellow competitors.

You can learn more about Jonathan Stoklosa from Delaware Online, CBS News, and the Huffington Post.