Founder’s Message - An Update On Sarah, H.A.L.O.’s Inspiration

Dear Friends,

Our daughter Sarah turned 27 years old in December. She has lived at New England Pediatric Care nearly 24 years since illness caused irreparable neurological impairment. Our experience with her long term care continues to inspire us to help children and their families in similar straits.

Sarah’s health is stable and doctors were recently able to remove her tracheostomy tube which has helped her breathe for many years. She cannot ambulate or consistently control her limbs but is able to use switches to interact with computers and her environment. Although she receives her nourishment through a feeding tube, she is also on a tasting program to experience the pleasure of small amounts of food such as yogurt or applesauce.

We will probably never know how much Sarah understands of the world around her. She vocalizes at times and responds to our voices and touch. She smiles and can also express a negative opinion when she doesn’t like something. Overall she seems content. We continue to visit Sarah frequently and hope she feels loved and safe.

The world is constantly changing, but for some people it stays the same. This issue of H.A.L.O. Reports shares how people brighten their days.

Thank you for your continued interest and support of H.A.L.O.

Yours truly,

Alan Pinshaw M.D.

H.A.L.O.’s Gift Helps Bryan ‘Be Like Any Other Kid’

Bryan heads out to the backyard play structure to play with his brothers.
The H.A.L.O. Foundation’s gift to five-year-old Bryan K. has changed his life.

“The battery-operated car is exactly what he needed to get out in the yard and interact with his brothers,” says mother Sandy. “Thanks to H.A.L.O. he doesn’t have to sit watching his brothers play, he can participate and be like any other kid.”

Sandy and her husband Erik adopted Bryan from an orphanage in China almost 1 ½ years ago. At the time he had a diagnosis of “lower limb atrophy and paralysis.” He was unable to walk, but there was no hesitation about the adoption.
Bryan's adoptive family.

Nearly two years before, unaware of Bryan’s existence, Sandy and Erik had welcomed Bryan’s older brother Darren as the seventh child in their family after learning about his serious heart condition on an international adoption blog. They brought him to pediatric cardiologists at the University of Michigan and today Darren is a healthy seven-year-old.

They began the pursuit of Bryan’s adoption after learning about him from an American volunteer at the same orphanage where Darren had lived. Sandy said “We later realized we even had pictures of Bryan peeking from a crib on our previous trip to the orphanage from two years before. It was meant to be.”

U.S. doctors initially diagnosed Bryan’s condition as Spinal Muscular Atrophy but testing was negative. He continues to be tested to get to the root of his condition.

Since making his home in Michigan, Bryan has developed some strength and feeling, but no reflexes, in his legs, according to Sandy. He crawls and can steady himself against the walls or furniture, but outside his parents carry him or use a stroller. Although Bryan can use a walker it is impractical in the family’s yard, which slopes down a hill.

“We are so thankful to the H.A.L.O. Foundation for Bryan’s [Fisher Price Power Wheels] car because it gives him a sense of independence, a chance to be a little boy. We don’t know what his future holds, so we just try to enjoy our time with Bryan now,” Sandy says.

Visit www.halo.org to learn more about requesting gifts and making donations.

Working At Cedarcrest Center Is Inspiring, Not Sad Says Veteran Nurse

Before Matt Governor began working at Cedarcrest Center for Children with Disabilities he was in the restaurant business. He wanted to make a life altering change, and he did.

“People always say ‘God bless you to work there because it is so sad,” says Matt, now an LNA (Licensed Nursing Assistant). “But no, it’s not! It’s rewarding and inspiring.”
LNA Matt Governor interacts with a resident
at Cedarcrest Center for Children with Disabilities
The Cedarcrest Center in Keene, NH is a specialized pediatric medical facility and school providing comprehensive services to children with complex medical and developmental needs; 90 staffers meet the needs of 26 residents from infants through age 21, and provide outpatient services for individuals age three through young adults.

Matt takes care of the children’s daily needs after school. He freshens them up for the afternoon, monitors their health, and manages oxygen and feeding tubes. He also accompanies them on medical visits and field trips and interacts often to know each individual’s personality and communication style.

“I can see kids moving forward every day,” said Matt, who moved to New Hampshire to spend more time with his own family. He finds it deeply fulfilling to wean a child off a tracheostomy or feeding tube, to make them laugh or stabilize their conditions enough to go home. He is currently Cedarcrest’s only male LNA so he tries to be a role model for the boys, too.

When Matt was younger, he worked at a summer program for kids with Down Syndrome, and felt a connection. He felt pulled toward children with special needs. When he began raising his own kids and coached sports, families whose children had seizure disorders or behavioral problems sensed this and gravitated to his teams.

“Working with these children is a challenge but I think of them as regular children with some added bells and whistles,” says Matt. Although most of his patients cannot verbalize or move independently, he “gets” them.

Caring for medically complex children has helped Matt appreciate his six wonderful children, ages 15 to 27. One of the things he likes about his job is that it relieves mothers and fathers of the medical caretaker role “so they can stand back and become parents again,” he explained.

Being an LNA has also clarified Matt’s own goals. After 11 years in what he intended to be an interim job, he plans to return to school to become a respiratory therapist for children.

To learn more about The Cedarcrest Center for Children with Disabilities visit www.cedarcrest4kids.org.

Family Circle Programs Builds Ties With Community

One of the most important benefits of H.A.L.O’s Family Circle programs is the connection made with the larger community.

“The longevity [9 years] of the Sunday Swim and Sing program at Newton, MA Jewish Community Center has increased acceptance for this population of young adults with severe disabilities,” says Doreen Cummings. She is Associate Division Director of Homes and Family Support for the non-sectarian Jewish Family & Children’s Service (JF&CS) of Greater Boston, which manages Family Circle for HALO.

The three-hour program provides socialization and enrichment for individuals who live at home, and respite for their families.

Just as importantly, it boosts visibility for an underserved population, Doreen said. The staff and general public has become more aware and supportive due to repeated exposure.

“We are a fixture at the JCC and see similar acceptance building in the younger program at the Stoughton, MA YMCA,” she said.

In Newton, 16 participants are supported one-to-one by the same staffer all year, for 30 Sundays. Stoughton serves 10 participants.

Family Circle also distributes a resource newsletter to more than 300 families and supports the JF&CS Disabilities Resource Network .

For information visit www.halo.org


Seven Hills Focuses On ‘Meaningful’ Activities

Is life a succession of empty days in a nursing home?

Not at Seven Hills Pediatric Center in Groton, Massachusetts.

Katie Cullen
Katie Cullen, director of Adult Services and Activities, and Monica Kleeman, Adult Services instructor, have developed meaningful activities for their new program, Volunteer Work Activities (V.W.A.).

These activities enhance daily life for residents in the age 22+ program, despite complex medical conditions and severe neurological impairment.

“I believe that individuals should not just move through life, they need a purpose,” says Monica, who has a Master’s degree in Adaptive Physical Education and taught students at Perkins School for the Blind before coming to Seven Hills Pediatric Center.

Monica has developed partnerships with local businesses and organizations to enable residents to contribute to their community, and to also enhance their awareness of the world.

Groups of 6-8 adults rotate into the V.W.A. classroom, where Monica and a teaching assistant guide them hand over hand through activities. All residents over 22 years old are served in this program.

Projects include:
  • Shopping for ingredients and baking goods to sell at the weekly coffee cart, and punching the frequent buyer cards
  • Sorting, repackaging and selling flowers donated by Trader Joes
  • Making bookmarks and notecards to donate to the library and senior center
  • Making sensory “play dough” to give away at local fairs (it has a Kool Aid® scent and is especially tactile)
All activities are designed to promote social interaction and increase visibility in the able bodied population, too, according to Monica. Any “profits” are recycled to buy materials or fund field trips.
Monica Kleeman

If there isn’t a concrete project, the residents and aides take staff orders and fulfill errands or shopping to create opportunities for interaction.

Residents who use switches to operate communication boards have conducted energy surveys and done comparison tests in house. For instance, they will ask staff to compare scented soaps or candles, which provides sensory involvement and participation in a decision.

“These activities help staff connect with residents who are nonverbal and non-ambulatory and even attract volunteers to interact and add to their quality of life,” said Katie, the director. “It has been so successful it is being adapted for the younger residents’ evening activities.”