Potential 2013 Summer Magazine

potential A publication of Kennedy Krieger Institute

Transitioning to Adulthood: What You Need to Know Unbroken: Pfeiffer’s Inspiring Battle with Transverse Myelitis Prosthetic Arms Offer Hope, Possibilities for Landmine Survivor The Healing Power of Therapy Dogs

We are all born with great

potential

shouldn’t we all have the chance to achieve it?

A publication of Kennedy Krieger Institute Volume 13, No. 1 • Summer 2013

IN MY Own Words Bob Nobles III, Great Expectations: A student at Kennedy Krieger has his sights set on the Naval Academy.

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FEATURES

Letter from our

President In this issue, we examine one of the biggest challenges faced by families of children with disabilities—navigating the path to adulthood. As these parents know, disability can affect virtually every aspect of life, from healthcare and employment, housing and financial security, to emotional well-being and socialization. It can seem overwhelming, but our experts share strategies that can make the journey easier, and you’ll read about the keys to success for some former Kennedy Krieger students and patients who have gone on to secure internships and jobs, earn college degrees, and achieve dreams many thought were not possible.

At Kennedy Krieger Institute, the work that our doctors, therapists, educators, and researchers do changes lives, and the stories in this issue remind us what a difference can be made.

Thanks to help from our therapists, the family of a little girl with transverse myelitis has experienced little miracles with every milestone—the first time she stood, the first time she crawled, the first time she walked without crutches—and she’ll continue to make progress for years to come.

For a young boy in Yemen who lost his arms in a landmine explosion, our doctors and therapists provided prosthetic arms and rehabilitative therapy, opening up a world of possibilities for his future.

And a unique collaboration between our doctors and a group of young engineers led to an invention that could greatly reduce cerebral palsy for infants in developing nations.

Our reach extends far beyond the confines of our hospital, clinics, and schools. Through patient care, research and professional training, education, or community initiatives, we strive to ensure that children everywhere—whether at the Institute or beyond—have a chance to unlock their potential.

Sincerely, Gary W. Goldstein, MD

The World in His Arms: Kennedy Krieger teams up with a non-profit to help a young landmine survivor in war-torn Yemen.

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Unbroken: For Pfeiffer’s family, every little milestone is a miracle, thanks to the International Center for Spinal Cord Injury.

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Transitioning into the Great Unknown: Adulthood Navigating the path to adulthood can be at turns frustrating, overwhelming, and rewarding.

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RESEARCH Frontiers The Cooling Cure: A collaboration between doctors and engineers leads to an innovative, low-cost medical device that may help prevent cerebral palsy in developing countries.

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Program Spotlight The Healing Power of Therapy Dogs: Animal Assisted Therapy program uses specially trained dogs to enhance therapy. 12

News briefs & Events Kennedy Krieger in the news and upcoming Institute events. 13

potential Editor

AVP of Marketing and PR

Kristina Rolfes

Bryan Stark

Contributing Writers

Media Inquiries

Allison Eatough and Abigail Green

Elise Babbitt-Welker

Art Director

Publication Inquiries

Amy Mallik

443-923-7330 or TTY 443-923-2645

Creative Services manager

Patient Referrals

Sarah Mooney

888-554-2080 or kennedykrieger.org

To view this issue and past issues online, visit potentialmag.kennedykrieger.org.

To learn more, get involved, and stay connected, visit kennedykrieger.org/connect.

On the cover: Four-year-old Pfeiffer Whiteley, patient at the International Center for Spinal Cord Injury at Kennedy Krieger Institute.

Photography by Steve Parke

Potential is published by the Marketing and Public Relations Department of the Kennedy Krieger Institute, 707 North Broadway, Baltimore, Maryland 21205. Kennedy Krieger Institute recognizes and respects the rights of patients and their families and treats them with courtesy and dignity. Care is provided in a manner that preserves cultural, psychosocial, spiritual and personal values, beliefs, and preferences. We encourage patients and families to become active partners in their care by asking questions, requesting resources, and advocating for the services and support they need. © 2013, Kennedy Krieger Institute

In My own words

“My main goal is to get into the Naval Academy and graduate as a Marine Corps officer…I don’t see how my disability will affect me getting there.”

Great Expectations In My Own Words: Bob Nobles III As told to Abigail Green I started attending Kennedy Krieger in fifth grade. I’m now a junior in high school. It’s been a really good experience. I don’t think I’d be where I am now if it hadn’t been for Kennedy Krieger. Before I came here, I was below grade level on everything, I had low self-esteem, and my behavior was an issue.

The bus comes and picks up my twin brother Brian and me at 5:50 a.m. It’s a two-and-a-halfhour ride to and from school. It’s not bad. I usually sleep or read a book. What’s neat about Kennedy Krieger is that you have people from different walks of life, from different parts of not only Maryland and DC, but different parts of the world. It’s neat to talk with them and share your life experiences.

In December 2011, my Young Marines unit took a trip to Pearl Harbor to celebrate the 70th anniversary of the attack. We participated in a parade where we marched through Honolulu along with high school bands, hula dancers, and other Young Marines units. The next day we went on a tour of Oahu. We saw a lot of really neat things.

Last fall, I was selected to represent Kennedy Krieger as a student ambassador for the Festival of Trees. I got to greet Santa Claus and throw presents to kids. I didn’t get nervous because I’ve been on a stage before. The mayor of my hometown of New Windsor, in Carroll County, read an article about me and decided to give me an award for being an outstanding citizen. At a town council meeting, he called me up, presented me with the award, and I gave a speech.

I was able to express that I would not have gotten to where I am now without my parents. They showed me the value of respect.

That’s what has helped me through most of my life, through school, through everything.

Nobles accepting his award as a student ambassador for the Festival of Trees, with Lainy LeBow-Sachs

My main goal is to get into the Naval Academy and graduate as a Marine Corps officer. Even before the Young Marines I was talking about pursuing a military career to serve my country. I don’t see how my disability will affect me getting there. I believe that if I put my mind to it and do my best in school, then I will succeed in my goals.

Bob Nobles III is a student at Kennedy Krieger School Programs: Greenspring Campus.

He has a diagnosis of Asperger syndrome.

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The World in His Arms For a 14-year-old boy who lost his arms in a landmine explosion in Yemen, new prosthetic arms and rehabilitative therapy from Kennedy Krieger’s Limb Differences Clinic open up a world of possibilities for his future.

Four years ago, Abdul Karim heard an explosion just outside his house in Yemen. When he opened his door, his ten-year-old son, Mohammed, was standing in the doorway, covered in blood.

Mohammed had spent that morning playing outside near his village.

As the sun cast its light over the nearby mosque, Mohammed noticed a shiny object on the ground. He picked it up, thinking it was a toy, and put it in his pocket, intending to bring it home and show his father. When he neared home, he took out the object and tried to crush it, causing it to explode in his hands. “I’m okay,” he told his father when he reached the doorway, but he was not. Both his arms were later amputated, and he lost vision in one eye.

Mohammed is one of thousands of victims of landmine explosions in war-torn countries like Yemen. Many victims are children, and those who survive suffer stigma in their community and often grow up unable to find a vocation due to their disabilities. But Mohammed is one of the fortunate ones. He was given the gift of new prosthetic arms, courtesy of Kennedy Krieger Institute’s Limb Differences Clinic and the Marshall Legacy Institute, an organization in Arlington, Virginia, dedicated to helping landmine survivors.

The two organizations teamed up to provide Mohammed new prosthetic arms with the help of prosthetic manufacturer Dankmeyer, Inc., and Kennedy Krieger also offered to provide complimentary rehabilitative therapy for Mohammed, whose family had no means to pay for care.

A Team Approach to Addressing All of a Child’s Needs Although Mohammed’s circumstances for arriving at the Limb Differences Clinic are unique, his rehabilitative needs are much the same as any other patient’s. “The goal of our clinic is to help children with limb anomalies or deficiencies be independent and live fulfilling lives,” says Dr. Stacy Suskauer, director of the Limb Differences Clinic. To help address this goal, the clinic has an orthopedist, a rehabilitation physician, a prosthetist, a physical therapist, and an occupational therapist, all working together to provide coordinated care for the patient. “Together, we come up with a cohesive plan to help children with all of their needs,” says Dr. Suskauer.

For children with limb differences, helping them improve function in their limbs and providing prostheses is only part of the battle. The team is also concerned with how families are doing socially and emotionally.

The Limb Differences Clinic encourages patients and families to interact with others facing similar challenges during clinic visits. Families can also take advantage of a support group for families of children with limb differences offered through the Institute. Some of these children may never have met anyone else with a limb difference, explains Dr. Suskauer. “We help a child understand: You are not alone.”

Photo left: Mohammed practices grasping objects during occupational therapy.

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Photo left: Mohammed with Marshall Legacy Institute coordinator Lauren Demeter, and Kennedy Krieger Limb Differences Clinic team members Dr. Stacy Suskauer, Chrissy Gallion, and Mark Hopkins.

Occupational therapist Chrissy Gallion helps Mohammed learn to use his new arms.

Prosthetist Mark Hopkins checks the fit on Mohammed’s prostheses.

Forty percent of children with limb differences have amputations resulting from cancer, infection, or trauma, as in Mohammed’s case.

Most children with limb differences were born with them—limb differences occur in about 5 out of 1,000 births, and can be caused by vascular diseases during pregnancy or genetic disorders. About a third of the time, the cause is unknown. Genetic counseling may be helpful for some families in determining any genetic risk factors they may carry.

The clinic treats most patients throughout childhood, addressing therapy and prosthetic needs as they grow. For children who live far away, the clinic can evaluate a child’s therapy needs and coordinate with the patient’s home therapist.

Hope for a Brighter Future In November, members of the Limb Differences Clinic team— Dr. Suskauer, prosthetist Mark Hopkins, and occupational therapist Chrissy Gallion—met with Mohammed and his guardian for an assessment of his needs. Dr. Suskauer explained through an interpreter that they would like to provide him with arms that will help him be as independent as possible. Mohammed told the group he would like to be able to pick up and put on his backpack, button his shirt, and eat with a fork, things he has been unable to do for the past four years.

The clinic’s prosthetist, Mark Hopkins, carefully measured Mohammed for his new prostheses and designed fully functional artificial arms, specially made for Mohammed. The new prostheses allow him to rotate his arms, grasp objects, and bring his hands to his mouth or chest, which he was unable to do before.

At 14, Mohammed is receiving the prostheses at a fairly young age, so he has a good chance of successfully adjusting to them. “The earlier you fit somebody for upper limb loss, the more likely they are to integrate [the prostheses] into their lifestyle and use them successfully,” says Hopkins.

Mohammed came back to the Institute for an occupational therapy session to help him practice eating, drinking, writing, buttoning a shirt,

and picking up objects with his new arms. “His new prostheses will give him the ability to do all of his daily activities, go to school, write, do computer activities, and pretty much everything that he needs to do,” says Gallion.

Mohammed seems to take his disability in stride, saying he is not sad about what happened to him. He says he is excited about using his new arms, and he looks forward to his future. “I want to be an engineer when I grow up,” he says. “And I want to help other landmine survivors.”

“He has a great attitude,” observes Gallion. Like Mohammed, a lot of kids she has worked with are very determined, very tough, and have strong spirits that allow them to make it through traumatic events and persevere. One of the reasons she loves working with kids like Mohammed is their ability to bounce back quickly and remain the fun, playful kids they always were.

Mohammed returned to his family in Yemen in January with a new set of arms and a whole new world of possibilities. “We hope his new arms will help him succeed in school and gain an increase in independence,” says Lauren Demeter, program coordinator at Marshall Legacy Institute. “His future is really up to him now,” she says. “We don’t want to tell him where to go from here, but we know he’s going to go somewhere with this.” n Kristina Rolfes To see more photos and a video featuring Mohammed’s therapy at Kennedy Krieger, visit potentialmag.kennedykrieger.org.

“It’s so rewarding to be able to bring something to Mohammed’s life that would not have been possible otherwise... Having a limb difference really shouldn’t hold him back. He can do anything he wants to.”

—Dr. Stacy Suskauer Director of the Limb Differences Clinic

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“Part of the silver lining for us is we get to witness little miracles all the time—the first time she stood, the first time she crawled, the first time she walked without crutches. Every little milestone has been so inspirational and enlightening.” ­— Mandy Whiteley Mother of Pfeiffer, New York City

unbroken

For Pfeiffer’s family, every milestone is a little miracle, thanks to the International Center for Spinal Cord Injury at Kennedy Krieger.

At 4 years old, Victoria “Pfeiffer” Whiteley is funny, precocious, very charming, and wise beyond her years. She loves dresses with flowers, Barbies, and all things girly. She is also partially paralyzed, a result of transverse myelitis.

When Pfeiffer Whiteley was 8 months old, she developed a high fever and seemed to “flop over.” Both the pediatrician and the doctor at the hospital said the same thing—it was just a virus that would resolve on its own.

But the next day, her mother, Mandy, noticed that although Pfeiffer was moving her elbows, her hands were still, and she wasn’t grasping things with her fingers like she had before. Whiteley, thinking her daughter must still be weak from the virus, continued to wait for the fever to break.

“It was five days before Christmas,” Whiteley recalls. “I didn’t think in a million years she’d be paralyzed.”

The next day, the fever was gone, but Pfeiffer still wasn’t moving. Beginning to panic, Whiteley pinched Pfeiffer’s legs to get a response, but none came.

Later at the emergency room, after a battery of tests including MRIs, blood work, and a spinal tap, a neurologist told Whiteley the news in the early hours of the morning— Pfeiffer was paralyzed, a result of transverse myelitis, a rare neurological disorder caused by inflammation of the spinal cord. The inflammation can damage or destroy myelin, the fatty insulation that covers nerve cell fibers, and interrupt communication between the nerves in the spinal cord and the rest of the body.

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“It has been so amazing and rewarding to see Pfeiffer go from an infant who could not move on her own to a child who is walking and running with crutches.”

Pfeiffer Whiteley and her therapist Brooke Meyer in the Institute’s therapy garden.

—Brooke Meyer Physical therapist at the Institute’s International Center for Spinal Cord Injury

Into the Unknown “I had never heard of transverse myelitis,” says Whiteley. “At first I was thinking, ‘All right, give her the medicine, give her the operation.’

It didn’t really connect until later that there is no cure.”

Because there was no operation that could help, her recovery depended largely on how well she responded to therapy. And the best place to go, doctors told her parents, was the International Center for Spinal Cord Injury (ICSCI) at Kennedy Krieger.

“I didn’t understand the severity of what we were dealing with until we got to Kennedy Krieger and walked into the therapy room and everyone was in wheelchairs,” Whiteley says.

This was Pfeiffer’s new community, and it was, she admits, shocking at first.

The hardest part for Whiteley was not knowing what the future held. The prognosis for transverse myelitis is unpredictable—one third of those with transverse myelitis will recover, one third will stay the same, and the other third will improve marginally, but have weakness and gait problems.

“It’s hard,” says Whiteley. “You just want them to tell you everything will be fine—you want it so badly. But they won’t tell you your child is going to walk because they don’t know. No two cases are the same with transverse myelitis.”

Hope through Motion But therapists did offer hope that recovery from paralysis was possible through Activity– Based Restorative Therapies (ABRT), exercises that focus on prompting cells to “remember” how to move while encouraging

the growth of new nervous system cells.

The goal for Pfeiffer was to restore sensation, movement, and independence.

“She was progressing pretty quickly in the beginning,” says Whiteley. “It was exciting because all of a sudden she got movement in her left hand and then the right.” Soon, she was able to sit up, and then pull to a standing position.

over and have a dance party with the Barbies.

Without realizing it, Pfeiffer was walking.

“Pfeiffer, do you realize you just walked?”

Meyer asked her. Pfeiffer was three years old.

Later, as she was getting ready to leave, Pfeiffer called out with a grin, “Brooke!

Thank you for helping me walk today.”

These are the moments that melt Meyer’s heart and make her job so worthwhile.

After Pfeiffer’s initial inpatient stay, she began coming to Kennedy Krieger three times a year for intense, two-week bouts of therapy using equipment specially designed for children. Pfeiffer’s physical therapist, Brooke Meyer, developed a comprehensive exercise program that her therapists at home in New York could follow until her next visit.

For Pfeiffer’s family, all of her “firsts” are cause for celebration. “Part of the silver lining for us is we get to witness little miracles all the time—the first time she stood, the first time she crawled, the first time she walked without crutches,” explains Whiteley. “Every little milestone has been so inspirational and enlightening.”

Pfeiffer did therapy for 15 hours a week with various therapy equipment—a suspension harness and treadmill to facilitate walking, a functional electrical stimulation bike, an EMPI unit that provides electrical stimulation to muscles, and special ankle-foot orthosis braces that hold feet in alignment and strengthen ankles and toes. Her hard work began paying off—she progressed from walking with a walker to walking with forearm crutches, to a cane, then finally to walking without an assistive device for short distances.

Because she is young, Pfeiffer’s nervous system is still developing, so she has a good chance of recovery, according to Meyer.

“Pfeiffer is a determined little girl who has made so much progress, and she’ll continue to make progress. We’ve seen patients at the center gain meaningful recovery long after a spinal cord injury.”

Little Miracles Meyer recalls the first time Pfeiffer walked without an assistive device. At first, she would fall down on purpose because she was so used to the security of holding onto something while walking. But during one therapy session, Meyer lined up Barbies at two different stations, telling Pfeiffer to walk

In the meantime, Whiteley will continue Pfeiffer’s treatment at Kennedy Krieger, and trust them to guide her through her daughter’s care. “Kennedy Krieger and the International Center for Spinal Cord Injury are pioneers in transverse myelitis and spinal cord injuries,” says Whiteley. “They know what to expect as a spinal cord–injured child grows and progresses. Every time I go there I find out what’s coming down the road. We’re ahead of the game, rather than just waiting for something to happen and reacting.” n Kristina Rolfes

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hen Damian Jackson was younger, his mother, Carla Dixon, worried about what life would be like for her son after he left the safe environment of Kennedy Krieger High School. The school provided Damian—who has autism—with structure, socialization, and extensive therapy services. But Dixon knew that when school ended, so would the school-based services.

Transitioning to adulthood can be full of uncertainty for anyone, but for parents of the more than half a million individuals with disabilities who “age out” of high school each year, the uncertainty can be overwhelming.

One in five U.S. families has a member touched by a disability, and the rate of autism alone is growing at an alarming rate. An increasing population of individuals with disabilities, combined with dwindling state budgets, leaves many families facing long waiting lists for limited adult services. Once a child reaches adulthood, it’s like falling off a cliff, some disability advocates have noted.

Disability can affect virtually every aspect of life—employment, healthcare, housing, transportation, socialization, recreation, emotional well-being, and financial security—and families must navigate the sea of fragmented adult service agencies, often by trial and error, to find support for their adult child.

But there are strategies that can make the journey easier and help adults with disabilities lead more productive, independent, and fulfilling lives. And there are many former students and patients of Kennedy Krieger Institute who have successfully transitioned to adulthood, having secured internships and jobs, earned college degrees, and achieved dreams many thought were not possible.

Start Early

“Families should start thinking about transition from the moment a child receives a diagnosis.”

“Families should start thinking about transition from the moment a child receives a diagnosis,” says Eric Levey, MD, a pediatrician and researcher at Kennedy Krieger. “Envisioning your child’s future as an adult can help identify goals, so you can then identify a path and the appropriate resources for getting there.”

—Eric Levey, MD Kennedy Krieger pediatrician and researcher

Early on, families should also link to state agencies that can help children after they age out of school. In Maryland, these agencies include the Developmental Disabilities Administration (DDA), the Mental Hygiene Administration, and the Division of Rehabilitation Services (DORS).

“We encourage all families—as soon as there is a significant disability identified—to apply to the DDA, regardless of age” in order to increase the likelihood of having the support needed once school is over, says Chuck Durgin, Kennedy Krieger High School’s coordinator of adult and community services for students. continued on page 8

Transition Success Story: Damian Jackson With support and guidance from Kennedy Krieger School Programs, Damian now has his foot in the door as a rehabilitation technician and medical illustrator at a local hospital.

After graduation from Kennedy Krieger High School, Damian Jackson went on to complete three 10-week internships at Union Memorial Hospital. In April, Damian, 21, was offered a job at the hospital as a rehabilitation technician for inpatient physical therapy. Damian impressed the staff with his professionalism and work ethic during his internship, and they also appreciated his artistic ability. They have asked him to illustrate an upcoming chapter in a hospital book about hand injuries and physical therapy.

Damian. ration by Hand illust

“Isn’t it wonderful?” says Ann Marie Angarita, Damian’s coordinator at Project Search—The Arc Baltimore’s education and internship program for students with disabilities. “He has his foot in the door. We are all so happy for him!”

Keys to Success: Damian participated in Kennedy Krieger’s work-based learning program at Kennedy Krieger High School. Adult services coordinator Chuck Durgin connected Damian with Project Search.

Damian wouldn’t be where he is today without the support and guidance of Kennedy Krieger, says Carla Dixon, Damian’s mom. “A lot of people worked with Damian to help him so he could succeed,” she says.

“I’m very grateful.”

“He’s working, he’s happy, and he’s growing socially…

He’s succeeded so much. I’m just so proud of him.”

—Carla Dixon, mother of Damian

Damian at work as a PRN rehabilitation technician.

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Partner with Your Child’s School Transition planning is most successful when schools and families work together, so families are prepared to continue advocating for their loved ones once school is over, says Durgin, who worked with Damian and his family to develop transition goals. If families are not actively involved in the process, their child may be at a disadvantage.

“We use creative strategies to address the needs of all children, regardless of their level of disability and level of personal and family resources, so that people with more significant disabilities or financial hardships aren’t left behind,” says Durgin.

Durgin and the school team work with families, employers, and adult service agencies to identify post-school placements. They also assist families with filling out agency paperwork, defining anticipated support needs, coordinating visits to post-school placements, and following up with parents after graduation to see how graduates are adjusting to the community.

Involve Your Healthcare Providers Healthcare providers should also be active participants in an adolescent’s transition plan. At Kennedy Krieger, clinicians integrate transition planning into their visits to educate parents about planning for their child’s future.

Unlike many organizations, Kennedy Krieger continues to treat individuals with certain disabilities like muscular dystrophy, spina bifida, cerebral palsy, and spinal cord injuries into adulthood, ensuring continuity of care.

As part of a Center of Excellence grant from the Maryland Department of Health and Mental Hygiene, Dr. Levey and a team of Kennedy Krieger professionals designed formal transition planning guidelines for clinicians. These guidelines promote patients’ independence, understanding of their medical condition and treatment, educational and vocational development, and social adjustment. They also help families maintain continuity of resources into adulthood.

Unlike many organizations, Kennedy Krieger continues to treat individuals with certain disabilities like muscular dystrophy, spina bifida, cerebral palsy, and spinal cord injuries into adulthood, ensuring continuity of care. Kennedy Krieger also offers assistance in creating a portable health profile, which is a paper or electronic medical summary that can be shared with other healthcare providers, promoting collaboration that helps provide better care for patients, especially as they become adults.

Patients at the Institute have access to social workers who can provide them with guidance, support, counseling, and advocacy. “We look at children and adolescents holistically, and try to consider all of their needs with respect to family, peers, recreation, independence, mobility, healthcare, and sexuality,” says Mary Snyder-Vogel, director of social work.

“There’s a lot of collaboration within the Institute to problem solve and find available resources for kids who need critical support services in order to be successful,” says Durgin, who frequently consults with families of patients at Kennedy Krieger.

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Transition Success Story: Melissa Silverman Thanks in part to Kennedy Krieger’s Down syndrome mentoring program and parents who were constant advocates, Melissa went on to become a teacher’s assistant and an active disability advocate.

When Melissa Silverman was younger, her parents worried she wouldn’t have enough social interaction as she grew older, and they wondered what her future would hold. Now 30, Melissa, who has Down syndrome, is actively involved in advocacy and social groups, and has been employed as a teacher’s assistant at a local preschool for nine years. She has served on the boards of local and national Down syndrome advisory organizations, and is also the news editor for the GILD (Group for the Independent Learning Disabled), a local social group for adults with disabilities. She’s given talks at Loyola University and The Johns Hopkins University, and has been a keynote speaker at Down syndrome conferences. And as if that weren’t enough to keep her busy, she is a part-time professional magician. The magic is just one more way she works as a self-advocate, teaching people about her disability.

As her father, Jay, explains, the magic bundle of silk she uses in her shows is a way to help audiences understand people with disabilities. At first people just see a piece of fabric, but as they watch, it becomes something more. And that’s how it often is for people with disabilities.

“Our philosophy as parents has been to open as many doors for Melissa as we possibly can.”

—Janis Silverman, mother of Melissa

Keys to Success: When Melissa was a teenager, her parents met with social workers at Kennedy Krieger Institute and started a club for girls with Down syndrome. Through careful guidance from their parents and the team at the Institute, the girls learned about everything from what Down syndrome is to how to cope with body changes.

And when the girls entered their twenties, they served as mentors to younger girls with Down syndrome. Thanks in part to help from this program, Melissa gained the confidence she needed to succeed in her own life. She became the first person with Down syndrome in Baltimore County to earn a Maryland high school diploma, and she went on to community college, where she earned her child care certification.

Resources and Training for Families of Adolescents with Disabilities Any family who has an adult with a disability can tell you that adult service systems are complex. Families need to plan for everything from applying for disability benefits with the federal government, to finding housing, to making sure their health insurance benefits continue into adulthood. They need to plan for appropriate decision-making support, whether that means informal shared decision-making with a family member, or designating a healthcare surrogate or court-appointed guardian once their child turns 18. And as difficult as it is to think about, families need to consider estate planning, and how to ensure their loved one is taken care of in the future.

Kennedy Krieger’s Maryland Center for Developmental Disabilities (MCDD) offers several resources, services, and trainings to help families understand and address these complex issues.

MCDD’s director of adult services and training, Diane Dressler, advises families on how to navigate adult service systems, and provides local and national training for families on transition-related issues, particularly housing. She also works with local and federal agencies to advocate for individuals with disabilities, and was part of the Maryland Partnership for Affordable Housing initiative that resulted in $11 million in funding for Maryland to expand housing for individuals with disabilities.

Dressler advises people to apply at age 18 for the Housing Choice Voucher (Section 8) program, which provides funds for renting an apartment or house.

“This is a wonderful program that helps people have affordable housing in a situation where they can control where and with whom they live,” she says. “While waiting lists are long, typically eight to nine years, individuals can use this time to increase their daily living skills, establish credit, and explore resources for in-home supports.”

MCDD also offers the community-based program Project HEAL (Health, Education, Advocacy, and Law), which provides access to advocacy and legal services for children with developmental disabilities and their families.

“If an eligible parent needs help with transition services, we can explain what is required by federal and state law and regulations,” says Maureen van Stone, director of Project HEAL. “Or, we can simply review a child’s IEP with parents and Maureen van Stone of Project Heal helped then give them advice.” Since Jeffrey West get the school services he needed.

2005, Project HEAL has provided advocacy and legal services to more than 1,600 families, including many transition-aged students with disabilities.

MCDD’s Resource Finder (resourcefinder.kennedykrieger.org) provides families with information about national, state, and local resources, as well as links to agencies and associations that provide services, information, and programs for people with developmental disabilities.

The Resource Finder also coordinates presentations and trainings, such as the Adolescent Transition Lecture Series for families in the community. The lecture series educates individuals with disabilities, parents, family members, clinicians, and community providers about issues important to adolescents and young adults with disabilities.

MCDD also partners with the Maryland Developmental Disabilities Council and other state agencies to offer training and resources to support families of adults with disabilities.

Resources on adolescent transition: Maryland Center for Developmental Disabilities mcdd.kennedykrieger.org Resource Finder resourcefinder.kennedykrieger.org/transition HUD information on public housing hud.gov/offices/pih/pha/contacts/states/md.cfm Maryland Interagency Transition Council mdtransition.org Maryland Developmental Disabilities Council Planning Now Guide md-council.org/publications/planning_now.html Interactive Autism Network Community: iancommunity.org/cs/adults/

Transition Success Story: James Williams III James is redefining his potential thanks to more than 15 years of services at Kennedy Krieger, and parents who actively sought out vocational, employment, and social opportunities in the community.

Doctors once told James Williams’s parents their son should be institutionalized due to his severe intellectual disability and autism. Now 22, James is employed and has an active social life. He recently was offered a position working full time at a convenience store, where he is responsible for scanning the stock to let the manager know when they need more items in the store, in addition to ensuring that the aisles are neat and clean, and the shelves and magazine racks are stocked. He also works part time at the University of Maryland in the cafeteria, and has impressed his manager and supervisors with his work ethic. On weekends, James participates in a social club called

The Weekenders with other individuals with disabilities, going to the movies and dinner theaters, bowling, playing board games, visiting museums, and other activities. He is also involved in a church group and the Special Olympics.

Keys to Success: James received more than 15 years of special education and behavioral intervention services at Kennedy Krieger Institute. Through the Institute’s specialized autism education program, James developed important life skills and participated in work-based learning. Throughout James’s childhood, his parents maintained high

expectations for James. “Autism is a diagnosis, not an excuse,” is an oft-cited mantra of James’s parents, who insisted that James wash his own clothes, clean his room, make his bed, take out the trash, clean the bathroom, and vacuum the house.

James’s family actively sought out vocational, employment, and social opportunities for James throughout the community.

“We are so, so proud of James for his achievements. Seeing where he was, compared to where he is now, he’s done nothing but make us very, very proud.”

—James and Sheila Williams, parents of James

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Develop Work and Life Skills A big part of preparing for adulthood is developing work readiness skills that allow adolescents to gain valuable experience before entering the employment world. Adolescents can begin to learn responsibility by doing chores around the house, and volunteer opportunities can teach them social skills and responsibility, in addition to helping them explore what types of jobs they enjoy. Volunteering can also lead to a reference, which can help with future employment.

At Kennedy Krieger School Programs, work-based learning is a mainstay in the curriculum. Students choose an industry “major” and work in student-run businesses. “If students are successful in their on-campus jobs, they can continue their work-based learning through off-campus internships,” says Derek Glaaser, educational director at Kennedy Krieger School Programs. In the past, students have completed internships at Sinai Hospital, Port Discovery, Cylburn Arboretum, the Baltimore County Department of Aging, and the Baltimore Museum of Industry. Kennedy Krieger continues to build business partnerships with other organizations to provide additional employment opportunities for students.

The curriculum at Kennedy Krieger School Programs also focuses on learning life skills to promote independence. Students go on community-based trips with staff members to practice communication, socialization, and other life skills through activities such as shopping and dining out. These types of activities help students develop independence, says Michael Delia, director of the school’s specialized autism education program.

“Students who have the most success after graduation have families or guardians who devote time and energy to building relationships with outside agencies and organizations that support individuals with disabilities.”

—Chuck Durgin Coordinator of Adult and Community Services for Students

Build Support Networks For most of a child’s life, schools provide a social network. But once school is over, many children with disabilities lose social contacts and experience isolation and sometimes depression. Part of transition planning should include building strong support networks that will be in place after graduation.

These relationships can develop through social and recreational activities, summer camp programs, and social groups—all resulting in a positive support network after school is finished. Families should also build relationships with quality providers of mental health care and physical, occupational, and speech therapy so that these individuals continue to improve and don’t lose skills. Vocational networking with employers or agencies that provide employment support can help, as well.

Transitioning to adulthood is complex, but Kennedy Krieger sees more and more success stories every day. Through workbased learning, a high quality of special education intervention and health care over a long period of time, and building a network of community resources, adults with disabilities face a brighter tomorrow. n Allison Eatough and Kristina Rolfes

Transition Success Story: Liza Patchel A lifetime of care at Kennedy Krieger, along with her mother’s no-pity approach to parenting, helped Liza on her path to earning a master’s degree and living independently.

When Liza Patchel was diagnosed with cerebral palsy as an infant, doctors said she would never speak or walk. When she enrolled in public school, administrators said she would never play for their sports teams. Other “experts” told her she would never go to college. Now 31, Liza has spent most of her life proving them wrong.

Liza thrived in college, earning a nomination to the Phi Beta Kappa honor society and graduating with a 3.75 GPA. After completing an internship with the Developmental Disabilities Administration, she now works at the Eastern Shore Center for Independent Living, helping others with disabilities, and is pursuing a master’s degree in social work at the University of Southern California. Her goal is to become a hospital social worker with a special focus on helping children with traumatic brain injuries and spinal cord injuries. She plans on moving to Baltimore and living independently after graduation.

“She’s a great role model for younger patients with her self-motivation and accomplishments,” says Dr. Charles Silberstein, who has treated Liza at Kennedy Krieger since she was 5 years old.

Keys to Success: Liza credits the 16 years she spent in Kennedy Krieger Institute’s schools prior to attending public school with providing the foundation that helped her thrive. Liza also worked with a team of Kennedy Krieger doctors, clinicians, and therapists who taught her how to move in and out of her wheelchair, dress herself, walk with an assistive device, and even play fetch with her dog.

Liza is quick to recognize her mother, Sue Patchel, as the unsung hero in her story. “Even at times when I was feeling down about myself, she gave me tough love,” says Liza. This “nopity” approach to parenting spurred Liza’s love of helping the less fortunate, and helped her become the self-confident adult she is today.

“At Kennedy Krieger, they told me that I was just like everyone else and taught me to have high self-esteem.”

—Liza Patchel

research frontiers

An unexpected collaboration between neurology and bioengineering led to an innovative, low-cost medical device that may help prevent cerebral palsy in developing countries.

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s far back as 1000 BC, ancient civilizations used a primitive, but ingenious, cooling system using nothing more than clay pots, water, and the natural cooling power of evaporation to keep food cool. Could this same low-tech cooling system be used to prevent brain damage and cerebral palsy in developing countries? A team from Kennedy Krieger and Johns Hopkins recently developed an inexpensive medical device meant to do exactly that.

When a baby is deprived of oxygen during birth—known as asphyxia— brain function stops temporarily, and the potential for injury begins.

When the asphyxia is resolved, oxygen and blood return to the brain and the neurotransmitter glutamate is released, causing seizures and a cascade of cell death, which can result in cerebral palsy, intellectual disability, or death. But there is a therapeutic window in the first six hours after birth during which brain cells can be “rescued” by lowering the infant’s core body temperature to 33.5 degrees Celsius for 72 hours.

This cooling treatment, known as therapeutic hypothermia, blocks the effects of excessive glutamate and reduces seizures, which can reverse the process of cell death. At the end of the cooling period, the baby is slowly rewarmed until a temperature of 36 degrees Celsius is reached.

In three major controlled clinical trials based in the United States, London, and New Zealand, this method of therapeutic hypothermia using a cooling blanket system has been found to reduce the incidence of cerebral palsy by 40 percent and is now becoming the standard care of treatment for newborn asphyxia. While this treatment has proven effective for reducing the damage from asphyxia in the United States and other developed countries with substantial healthcare resources, the technique is not widely available in developing countries because it is expensive and requires a stable source of electricity.

When he returned, he discussed the question with pediatric neurologist and postdoctoral fellow Dr. Ryan Lee, who, at the suggestion of a bioengineer acquaintance, proposed submitting the problem to the Johns Hopkins University Center for Bioengineering Innovation & Design. Undergraduate bioengineering student John Kim selected the project, assembled a team of other undergraduate students at Johns Hopkins, and set about designing a solution. Dr. Johnston and Dr. Lee served as clinical advisors to Kim and his team, and guided them through the development of the device.

The resulting invention was a cooling system that relies on clay pots, water, and evaporation, and appeared to provide essentially the same neuroprotective results as the standard therapeutic hypothermia equipment used in U.S. hospitals when tested in newborn piglets. The prototype was modified to add a plastic-lined burlap basket and works by placing wet sand, urea-based cooling powder, and water in the clay pot. As the water evaporates, heat is transferred away from the basket, resulting in a lower temperature inside the basket.

“Our hope is that this low-cost device can help decrease the global incidence of cerebral palsy.”

—Dr. Ryan Lee Pediatric neurologist and postdoctoral fellow

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The student-designed device can be assembled for under $40—a fraction of the $12,000 cost of the standard equipment—and it can be powered by two AAA batteries, rather than alternating current, which is often unreliable in resource-poor countries. The device is equipped with simple LED lights that k r Ki ill flash if overheating or overcooling occurs, of :W to th ho making it easy to use in neonatal intensive care P ep e.” ate Cur nt-pe g units in developing countries, where the ratio of n i nding “Cool nurses to babies could be as high as 40 to one.

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According to the World Health Organization, the rate of asphyxia in developing countries is as high as 1.5 percent in newborns. Women may not have access to prenatal care, which can result in anemia, infection, maternal malnutrition, and premature delivery, all of which can lead to asphyxia.

It is estimated that 40 to 50 percent of cases of cerebral palsy in developing countries are the result of asphyxia.

for Dr. Johnston to begin thinking about how developing countries could have access to a better method for treating babies with asphyxia.

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Dr. Michael Johnston—renowned research scientist, executive vice president, and chief medical officer at Kennedy Krieger Institute— has been studying ways to provide neuroprotection for infants with asphyxia for more than 25 years, with the support of NIH grants to Kennedy Krieger Institute. During a visit to Egypt in 2010, he gave a lecture on therapeutic hypothermia at an international conference on brain injury, and one of the doctors in the audience asked if a window fan could help cool babies, since they did not have access to the expensive equipment used in the U.S. That question planted the seed

The team published their study on the new device in December in the journal Medical Devices: Evidence and Research. The device, called the “Cooling Cure,” is patent-pending, and the team is in the process of writing a grant proposal for clinical testing in India and Canada.

Based on the positive results, the team hopes this will be the first of many projects bringing together the fields of bioengineering and medicine at the Institute. The team already has a new project in the works—development of a cost-effective device for monitoring cardiac and respiratory function in infants. n Kristina Rolfes

To learn more about current research initiatives at the Institute, visit kennedykrieger.org/research.

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Program Spotlight

The Healing Power of Therapy Dogs Animal Assisted Therapy program uses specially trained dogs to enhance therapy.

When Stephanie Cooper Greenberg visits the children on Kennedy Krieger’s inpatient unit with her Dalmatian therapy dog, Mattilda, she gets to experience something magical. She has seen first-hand the natural bond that exists between children and dogs, and it can serve as a powerful motivator for therapy. Greenberg will never forget the time when a boy with a severe traumatic brain injury, who up until then had been non-responsive, reached out his hand for the first time to pet Mattilda.

Greenberg and her dog are one of six therapy dog teams that comprise the Animal Assisted Therapy program at the Institute, offered through the Child Life and Therapeutic Recreation department. In animal assisted therapy, dogs interact with patients during traditional therapy—behavioral, occupational, recreational, speech, and physical—to help them achieve their therapy goals.

A child with a brain injury may have difficulty moving an arm, but if she is given the opportunity to pet a therapy dog, she may move it without thinking. Or if the therapy goal is to learn to use a wheelchair, a child may be motivated to move across the room to get closer to a dog. For children with physical, behavioral, or communication difficulties, dogs can be the bridge that helps them overcome these challenges.

Aside from being a powerful motivator, the presence of a dog can lift children’s moods and give them something to focus on outside of themselves, according to Sherry Fisher, coordinator of the program.

Research has long established that being around animals can lower blood pressure and provide stress relief. A dog can help bring a sense of well-being to children in the inpatient unit.

“They also offer a social component for children hesitant to socialize, because the animals help them feel comfortable,” explains Fisher. “It’s unconditional love and unconditional acceptance.”

When the children see the dogs, their eyes light up and their emotions shift. “We’ve seen smiles on children who really aren’t interacting with anyone around them at the time,” says Fisher.

One patient spoke for the first time during therapy in response

to a dog, and another child with difficulty moving rolled over for the first time so she could show the dog.

“I feel privileged just to be part of this program because it’s just a magical thing that happens between these animals and the patients,” Fisher says.

Animals can be used in therapy for any patient on the inpatient unit who requests it. Therapists make sure children have no fears or allergies, and ask for parental permission. The handler is always present with the dog and the therapist, and helps position or command the dog according to the specific therapy. Greenberg is modest about her own role as a handler. “I just show up and let the magic happen between the child and the dog.”

Therapy dogs can be any size and any breed, but must go through a rigorous training and screening process through accredited, insured training programs like FIDOS For Freedom or National Capital Therapy Dogs. The dogs must be well behaved, mellow, and friendly around children. Dogs must also be trained to be comfortable around medical equipment and hospital settings.

Animal assisted therapy is just one component of several pet therapy offerings at the Institute. Dog teams have been visiting patients in the inpatient unit since 2009, bringing a little bit of joy and emotional support to patients after a long day of therapy. And the READ (Reading Education Assistance Dog) program, in which dogs and their handlers visit libraries in Kennedy Krieger School Programs to help children who struggle with reading, is now in its fourth year. Kids who are normally hesitant to read out loud feel more comfortable reading in front of a dog. And most recently, the Institute introduced a new animal to its therapy team: a miniature horse named Colt that makes visits to the inpatient lobby.

For the handlers who volunteer their time and their animals, seeing the difference an animal can make is beyond rewarding. “As dog owners, we know how much happiness our dogs bring us, and there is no greater joy than sharing our dogs with others, especially children with disabilities,” Greenberg says. n Kristina Rolfes For more information about the Animal Assisted Therapy program, contact Sherry Fisher at fisher@kennedykrieger.org. To see more photos and videos about the Animal Assisted Therapy program, along with a story featured in The Washington Post, visit potentialmag.kennedykrieger.org.

Photo above: Patient Paul Roman-Leon shares a special moment with Chesapeake Bay retriever Lewis.

Photo left: Occupational therapist Lisa Rones works with Destiny Fallas to improve movement in her arm with the help of therapy dog Mattilda.

Kennedy Krieger is the only institution in the region that offers such a wide breadth of pet therapy programs.

news briefs & events

Buy Chicken Soup for the Soul and Support Autism Research at the Institute Special Introduction Authored by Dr. Rebecca Landa Kennedy Krieger Institute’s Dr. Rebecca Landa has authored the introduction to Chicken Soup for the Soul: Raising Kids on the Spectrum: 101 Inspirational Stories for Parents of Children with Autism and Asperger’s, available now at booksellers nationwide. A percentage of proceeds from bookseller sales will support research efforts at Kennedy Krieger’s Center for Autism & Related Disorders that are aimed at uncovering the earliest signs of autism spectrum disorders (ASD) in baby siblings of children already diagnosed with an ASD. If you buy the book through Kennedy Krieger, a majority of the proceeds will be donated to the Institute, and your book will be autographed by Dr. Landa.

Purchase your copy today at autism.kennedykrieger.org/ChickenSoup.

Kennedy Krieger Launches National Event Partnership: Run for Their Lives 21 National Races, April through December

Kennedy Krieger is the national charitable partner of Run for Your Lives—a series of 5k obstacle course races around the country where you can run, jump, and climb your way to the finish—all while being chased by zombies! But don’t just run for your lives, Run for Their Lives, to help raise awareness and funds for kids battling brain injuries and disorders at Kennedy Krieger Institute.

Saturday, Oct. 12, 2013 Join the Kennedy Krieger Institute Charity Team in the 2013 Baltimore Running Festival! Whether it’s the Kids Fun Run, 5k, Team Relay, or half or full marathon, we’ve got a space for you! And if you can’t join us in person, you can still join the team as a “virtual racer.”

As a member of the Kennedy Krieger team, you can register for free by committing to raise funds for the Institute and our spinal cord injury program. You will also receive additional perks and surprises, such as a team Under Armour shirt, breakfast, and access to the hospitality tent.

For more information or to register to join the Kennedy Krieger team, visit kennedykrieger.org/BaltimoreMarathon.

The Run for Their Lives initiative is going on now through December. There are lots of ways you can help—you can register for one of the 21 races held across the nation, build your own fundraising team, sponsor another runner, make a donation, or volunteer at a race. Be sure to spread the word to your friends and family, and let them know they can help, even if they don’t participate in a race. Learn more and find out how to receive a discount at RunForTheirLives.KennedyKrieger.org.

Free Developmental Assessments for Infants Most at Risk for Autism Experts recommend that infant siblings of children with autism spectrum disorders (ASD) be screened earlier and more often than children who are not at high risk. The Center for Autism and Related Disorders at Kennedy Krieger Institute is now offering free developmental assessments for infants ages five to 10 months who have an older sibling diagnosed with ASD and live within a Mid-Atlantic five-state region or the District of Columbia. The goal of this new initiative is to improve early identification of children most at risk for ASD to ensure they don’t miss out on early intervention that can dramatically improve lifelong learning, communication, and social skills. When it comes to your child’s future, why wait and see?

To find out more or schedule your child’s free developmental assessment, call 443-923-7892 or visit autism.kennedykrieger.org.

Patient with Spinal Cord Injury Featured on Katie Couric’s Talk Show In February, a patient of our International Center for Spinal Cord Injury (ICSCI) appeared as a guest on Katie Couric’s national daytime talk show, “Katie.” Perneita Farrar Fitzgerald spoke of how intensive therapy at Kennedy Krieger’s ICSCI made it possible for her to walk down the aisle on her recent wedding day. Watch the segment online at katiecouric.com/videos/onebrides-inspiring-journey-down-the-aisle/.

potential

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Leave a Legacy that Unlocks a Child’s Potential It’s human nature to want to be remembered for something great. Today, many of our donors are investing in a child’s future by creating a legacy gift. These planned gifts allow for a great deal of flexibility and choice, depending on your personal financial needs. Some options offer immediate tax benefits, while others provide a guaranteed lifelong income. But each ensures that as long as there are children with developmental disabilities, Kennedy Krieger will be there to help them unlock their potential.

To find out more, contact the Kennedy Krieger Office of Development at 1-800-HELPKIDS or visit plannedgiving.kennedykrieger.org.

“Now I know why they say the real miracles happen at Kennedy Krieger.” ­– Joanne, mother of Ben

“Sharing our blessings by supporting the medical research at Kennedy Krieger creates a personal legacy, one that will transcend our own lifetimes and touch others far into the future.”

–Sandra and Clement Alpert

Your support is the key to unlocking a child’s potential.

helpkids.kennedykrieger.org