BY RACHEL EZEKIEL-FISHBEIN • PHOTOS PROVIDED BY HMS SCHOOL
In January, Amy and Phil Warmflash received the call that a space had opened up at the adult residential facility they had selected with their 21-year-old daughter, Jordana (Jordie) a full five months before she was to graduate from HMS School for Children with Cerebral Palsy. They had spent 16 years preparing Jordie, who has cerebral palsy, for such independence, but still, they were not ready for this call. How would Jordie react to the timing and the transition? Would all of the preparation work?
The family gathered at HMS to tell Jordie the news, the tension obvious on their faces. A short time later, Amy and Phil walked out of Jordie’s room, tears streaming down their faces. Next came Jordie, a huge grin splitting her face, as she sought to share her news and excitement with her HMS family – her teachers, therapists, nurses and friends.
Jordie moved into Margaret E. Moul Home several weeks later, bringing with her a transition booklet created by HMS, which described her social history, personality, attitude, likes and dislikes – a Cliff Notes of sorts for the staff, to hasten Jordie’s transition. This information is essential in the first weeks in a new residence, and providing it in writing lessens the anxiety of a large change for everyone involved.
Jordie is a success story. She quickly settled into her new home and made friends. Although at age 21, she could have foregone therapies, Jordie chose to continue receiving physical, speech and occupational therapy, and enthusiastically participated in the leisure activities Margaret Moul offers. She uses Skype and Facebook to continue friendships from HMS and stay in constant contact with her family.
Jordie’s success story began at the age of five, when she entered HMS, and evolved as she mastered unfamiliar and intimidating social situations, new technology, and the independence of residential life.
Jordie’s first classroom looked like any other kindergarten room, with colorful walls and cheerful pictures, but it was a place of serious work. Jordie entered HMS without the ability to use a communication device or drive a power chair, two of the most important skills for independence. Her anxiety hampered her ability to access the social community of her peers and family.
One of the first orders of business was helping Jordie find her voice, which would allow her to make choices and form social relationships. Jordie began with a tray on the front of her adapted stroller, with a picture for ‘yes’ and one for ‘no,’ which she could access with her fists. Jordie learned to use her hands in this way to answer questions long before she was able to nod or shake her head. Those two squares grew into four, then eight and so on, until there were two pages of pictures Jordie could access with her hands. Today, Jordie is a confident communicator with dozens of pages of words at her disposal on her communications device, and the ability to use the device to turn on her computer and TV.
Building Jordie’s communication skills helped her overcome her social anxiety and build relationships. She participated in a structured Communications Group, in which she and her peers
were taught to use their devices to converse with each other. As she came closer to transitioning out of HMS, the ability to start a dialogue and engage others would become a key component in living a rewarding and engaged adult life.
“We believe that transition begins from the day we accept a child, and is made up of myriad adjustments along the way,” explains HMS executive director Diane Gallagher, Ph.D. “Every child’s life is filled with transitions on the road to independence. For children with complex disabilities, like our students, these transitions are preeminent, because the stakes are exceedingly high. The success of these transitions is the difference between a life filled with community, friends and enriching interests and one far more solitary.”
The IDEA mandates that schools begin transition planning when a student turns 14. “At 14, we provide families with a checklist broken down by age up to 21, to give them a preview of what might be next, without overwhelming them,” explains HMS education director Christina Coia. “However, from the time the student enters HMS, we are looking at goals and objectives that will allow them to be happy, fulfilled adults in the post-21 world.”
HMS started working on transition goals for Jordie when she was five years old. At every meeting from age five to 21, the word transition was spoken in some context. By the time Jordie turned 14 and it was time to start planning, the word no longer frightened her parents.
“When Jordie was 10, they’d mention ‘transition’ as ‘something we’re not talking about yet,’ remembers Amy Warmflash. “It wasn’t scary, because it was just part of the horizon, but still, you’ve started to think about transition.”
The most important–and sometimes most difficult—skill for transition is communication. Students must be able to express their fears, feelings, needs and expectations to gain any semblance of independence and control over their lives. That can be exceedingly difficult for HMS’s students, the majority of whom depend upon assistive technology to communicate.
At 14, HMS students join a Functional Life Skills (FLS) group. The FLS curriculum grew out of the real life experiences of HMS graduates like Carla Talarek. It was developed to meet the needs of students in post-21 residential, social, and volunteer situations. To say that Carla Talarek was unhappy to come to HMS at age 17 would be an understatement. Carla cried almost every day her first year at HMS. For Carla, coming from the comfort of her home, where the world revolved around her needs, moving to HMS was a culture shock. But Carla had much to learn if she was to be successful as an adult living with her peers: how to wait, how to share time, and how to identify things of interest in which she wanted to participate. Unlike children who move into HMS’s residential facility at a younger age, Carla, already a young woman, had strong opinions about her care.
Those strong opinions, when combined with functional communications skills, helped Carla become a leader at Mary Campbell Center in Wilmington, DE, where she now resides. Today, Carla considers herself a voice for residents who can’t speak.
“Self-advocacy is an important skill for our students. They need to learn how to let people know what they want without waiting to be asked,” says HMS transition consultant Ellen Becker, MSW. “They also need to learn how to get along with adults and peers – how to communicate in a way that draws people in, how to start a conversation. There’s a give and take in relationships, and at some point, they were only able to take. We give them the skills to expand that relationship.”
Carla fought tooth and nail against the tools she needed for her future independence. Says Carla, “I didn’t like it (her communications device), because, it was a new thing. I hated any changes. …but I learned to be better with it… It opened a new door for me because, now, I can drive up to anybody, and start talking without any help.” Carla’s newfound independence and pride paved the way for her to run for student president at HMS, and win.
In her graduation speech, Carla thanked her team at HMS, saying, “Today is a very special day. I am very happy to move on. I am going to live at Mary Campbell Center. I am going to meet new people…you taught me how to speak up for myself.”
Through the FLS, program, HMS provides specialized, individualized experiences for students that build their communications skills across the curriculum and setting. Advocacy and self-protection, along with a wide array of creative arts, support the education program curriculum. The HMS residential program prepares students for living away from home, teaching them how to direct caregivers, and identify and access leisure interests. Parents are often surprised by students’ interest in residing at HMS and fearful of letting someone else take care of their child. Yet many of these students yearn for the increasing independence most adolescents and teens enjoy.
“Our students watch their siblings have sleepovers, stay after school for sports or clubs and eventually move out of the home. Meanwhile, it feels like they’re just standing still. Now they can do these same things that a typical older child might do, like living in a dorm and hanging out with friends late at night,” says Dee Avegnon, HMS’s director of residential services. “It gives them a sense of belonging, of independence and normalcy.”
One of the key skills taught for transition is the ability to be involved in a community. Community is built through leisure activities, shared living space and activities in the larger community, such as trips and volunteerism.
When Kyle DeLeon, 18, entered HMS at the age of seven, his speech was highly limited and so were his interests. In fact, he had one interest: wrestling. A shy boy with trouble expressing himself, Kyle avoided social interaction, and was more comfortable with his wrestling magazines and shows than with his peers.
Even when Kyle moved into HMS at the age of 10, wrestling dominated his time. When he was required to participate in leisure activities, he was disinterested.
When students transition into adult living, their days lose the structure of the school day. Therapies and education are no longer mandated, and hours can be spent alone unproductively, unless students choose to engage in leisure or recreational activities. His team knew that Kyle’s happiness, post-transition, depended upon learning to enjoy leisure activities. The key to getting there, they intuited, was to build Kyle’s communication skills.
“We always felt that as he grew in his ability to express himself, he’d feel more comfortable in social situations, and this has worked out exactly according to plan,” explains Kyle’s teacher Kevin Rafferty. “Kyle was inhibited socially by his inability to express himself. We were able to build communication work into every aspect of his programming, incorporating it across all settings from lunch to dance to the dorm room to the classroom, teaching him how to use his device to enable him to be a social human being.”
As Kyle’s communications improved, he became less shy and grew into a willing participant in after school activities, becoming fundamentally more involved with his peers. And, because HMS partners with outside arts organizations to develop its extracurricular activities, Kyle also learned how to interact and work with strangers. “Kyle’s behavioral issues were based on not feeling in control,” explains Rafferty. “Over time, using his communication skills to better control his environment has become a coping mechanism for him. As a result, his behavioral issues have improved dramatically. Kyle was motivated to improve his communications, because he wanted to be part of things and also to be involved.”
Kyle’s mother Eugenia credits Kyle’s improved communication skills with transforming his life, “Kyle’s become more a part of the community. The more he’s involved in, he’s forced to communicate with people and it helps him not to be trapped inside himself. It helps him to be more independent. He now understands that there are other things out there for him.”
The legal age of transition from special education to adult services in Pennsylvania, 21, is a critical juncture, which intimidates many families. As a child ages out of the education system, she loses many of her social services. Parents must learn a new set of rules and how to navigate a vastly different system, often with very little support or guidance. Fears can come up about a child’s care as parents’ age, financial security and physical care and safety.
Transition also symbolizes the shift from childhood into adulthood, which often means saying goodbye to the safe harbor of a trusted school and beloved teachers and therapists, and movement
into uncharted waters. Options for a child’s care when they reach the age of maturity are often far more limited, particularly for families who live in rural areas. HMS supports families in choosing the next step in the transition process. This includes taking students to visit residences and other potential placements, and helping parents try to access funding for the next stage.
In the beginning, before a child is even enrolled, HMS speaks to the family about their goals for their child. Usually communication and mobility top the list.
As students mature, it becomes increasingly important to build social skills and independence. As transition planning becomes more formal, there needs to be a dialogue about what the child and family want. Many families assume their child will always live with them, but that is not always what the child wants. Families have several other options: group homes, residential centers, and nursing facilities. Each placement depends upon the student’s physical and intellectual capabilities, and where they will have the best quality of life, i.e., as much independence as possible, the chance for a peer group and the opportunity for engagement in the community.
It’s important to test drive any potential placement to check the fit, whether that means engaging in activities at a residential center or getting to know other residents at a group home. If a child is going to live at home, there must be research and preparation to find activities that will keep her engaged and ensure a community of peers.
For typical children, the transitions that lead to such independence are routine and well established. For children with complex special needs, it can be hard to create these touchpoints, but this doesn’t mean they are any less necessary or that these children thirst for independence any less than typical children.
“We want to be sure our students are independent and exert positive influence on people and things affecting their lives to the fullest extent possible,” says Gallagher. “Our students transition into using communications devices that give them a voice, and power wheelchairs which give them autonomy; we teach them to create art, perform on stage and make music as they transition from being an observer to a participant, and we teach them how to make friends and engage outside our walls. They learn to make decisions and choices, gaining more control over their own lives. We seek every opportunity to teach our students to navigate new situations—from attending a ball game to volunteering—experiences that are simply expected of most children, but serve as transitions to our students…steps toward building independence from their families and providers, and thriving as adults.”
Amy Warmflash concurs as she reflects upon Jordie’s transition, “If you had told me that five year old in the little adaptive stroller in 1997 would come out of there fully communicating and moving and be able to be independent of me, I wouldn’t have believed you,” continues Amy, “and then I watched it happen over the course of 16 years.”•
ABOUT THE AUTHOR:
Rachel Ezekiel-Fishbein, is based in Elkins Park, PA.