One in a Million Back to School It Makes a Village

Transcription

amazingkids
A publication of The Children’s Institute
One in a Million
How one amazing boy
beat the odds
Back to School
No ordinary first day,
no ordinary school
It Makes
a Village
Building a great family
one child at a time
FALL 2010
amazingkids
contents
milesahead
FALL2010
A publication of The Children’s Institute
feature stories:
A
visitor recently saw the phrase we use to
describe our organization — Amazing
Kids. Amazing Place. — and wondered
aloud whether it’s the kids that make the
place amazing or vice versa.
And you’ll meet a remarkable educator who recently
retired from The Day School. Bill Bauer and his staff
have shaped the school into an exceptionally childfocused place, and parents often tell us how much they
appreciate seeing their children learn, have fun and
thrive there.
The answer is “both.”
The children and young people we serve are indeed
amazing. They face significant challenges with
courage, strength and good humor.
Those qualities inspire all of us who work here and we
do everything in our power to help each child become
all that he or she can be. In this issue, you’ll read about
some of the ways in which that happens.
2
8
12
ONE IN A MILLION
He’s an amazing kid
who suffered a terrible
one-in-a-million medical
event. But, with the help
of his family and a team
of medical and
rehabilitation
professionals, 4-year-old
Alex is bouncing back —
and even playing sports.
BACK TO SCHOOL
From the minute the kids
return to school after
summer vacation, The
Day School hums along,
in some ways you might
expect, and others that
may surprise you. Learn
about the school and a
major transition that’s
just happened.
IT MAKES A VILLAGE
In Lawrence County, a
church speaker
changed the direction of
one couple’s lives. Since
then, Nan and John
Beachem have helped
raise dozens of children,
including some through
Project STAR’s Medical
Foster Care Program.
20
DONOR PROFILE
28
AMAZING WISH LIST
22
NEWS BRIEFS
30
DID YOU KNOW
24
COMMUNITY
For example, you’ll encounter 4-year-old Alex Brown
who, until recently, was a patient in our Hospital. We’re
still helping Alex heal, and, for children, healing
involves play. Our therapists incorporate that basic tenet
of child development into the work they do every day.
What does all of that add up to? Together, our amazing
kids and excellent staff create a powerful synergy that
makes The Children’s Institute a uniquely productive
and joyful organization — and a truly amazing place.
Sincerely,
David K. Miles, MEd, MPM
President and CEO
You’ll learn about a terrific couple working with
Project STAR. Some families are unable to help their
children who struggle with significant medical issues,
so our dedicated team of specialists finds open-hearted
people like Nan and John Beachem to become foster,
and sometimes adoptive, parents for those children.
and more:
15
WAITING CHILDREN
PROFILES
16
THERAPEUTIC GARDEN
19
BOARD OF DIRECTORS
26
COMMUNITY CALENDAR
On the cover
Alex Brown. 4, enjoys
recreational therapy
page 1
amazing kids magazine
one
in a
million
Four-year-old Alex Brown is a one-in-a-million kid — big
brown eyes, an engaging grin, a quick mind and a
delightful sense of humor.
But he’s also one in a million in another way.
Alex, his parents Amy and Eric and toddler sister Abby were
living a happy, full life in their Cranberry Township home.
Then, last October, Alex suffered a sudden, spontaneous
bleed in his spine — a “cervical epidural hematoma of
unknown origin.” It was, statistically, a one-in-a-million
medical event, and it nearly cost Alex his life. Complications,
including a spinal stroke, gave him only a 5 percent chance
of survival. Emergency surgeries and 11 weeks in the ICU at
Children’s Hospital of Pittsburgh of UPMC saved Alex, but
the road was bumpy. Several times, he nearly died.
page 3
beating the odds.
When Alex was finally stable, his doctors recommended
a transfer to The Hospital at The Children’s Institute.
Upon arrival, Alex was still very ill. Breathing with a
ventilator, fed through a gastric tube, unable to move his
legs and with extreme weakness in his upper body, he
required significant medical support as well as an
intensive rehabilitation program.
The Children’s Institute’s staff jumped into action on
both fronts.
to the valve by distracting him with his favorite games
while the valve was in place.
Alex has a terrific imagination, and the therapy team
went wherever it took them. “Some days we were
astronauts, some days we were chased by monsters,”
says Tess de las Alas, MS, OTR/L, Alex’s primary
occupational therapist. “What we do in our therapies
can fit into any context that engages a child.”
Alex’s dad, Eric, an 8th grade history teacher, says “All
the therapists had great flexibility. During sessions,
they’d interpret what he was thinking and feeling, and
immediately adjust their approach. They had a lot of
compassion, but they also pushed him to work hard.”
The Children’s Institute’s “whole child” approach also
considers psychosocial issues. Certified child life
specialist Breinne Regan, MS, CCLS, created a “veterinary hospital” in which she and Alex “treated” toy
Pediatric intensivist Dr. Howard Ferimer, whose
specialty is treating inpatient children dealing with
critical illness, began addressing Alex’s medical needs,
which included respiratory support, pain control,
electrolyte balance and nutrition. Pediatric rehabilitation
medicine specialist Dr. Ewa Brandys led the intensive,
multidisciplinary rehabilitation effort.
Alex’s mom, Amy, recalls, “They involved us right away
and let us help set goals. We wanted an aggressive
program to help Alex get his life back on track, and
that’s exactly what they did.”
Alex’s program included several hours each day of
physical, occupational, speech/language, child life and
recreation therapies. He called them “classes.” Initial
goals included building endurance and working on core
strength to help with breathing and balance. Those
achievements would pave the way for standing, walking
and improved fine motor skills.
Working with children requires a special approach.
Alex’s primary physical therapist, Christy Dawes, DPT,
NCS, ATC, says, “A child’s job is to play. So, for
example, we don’t ask a young child to do leg lifts; we
make up games that involve things like kicking a
beanbag. Same activity, same results, but to the child it’s
play.”
In order to regain good function in both speaking and
swallowing, Alex needed a “Passy-Muir valve” on the
breathing tube in this throat. But, at first, the valve can
be difficult to tolerate. Speech/language pathologist
Becky Yarussi, MS, CCC-SLP, helped Alex acclimate
page 4
page 5
“All the therapists had great flexibility. During sessions, they’d interpret what
he was thinking and feeling, and immediately adjust their approach.
They had a lot of compassion, but they also pushed him to work hard.”
help him learn to deal with grass and sidewalks — and
also just for fun. (Alex renamed recreational therapy
“my fun class.”)
Alex loves messy play! Melissa Fryman, CTRS, uses recreational therapy activities
like this to help patients remember that even though they are in the hospital, they’re
still just kids who need to have fun.
animals with the IVs Alex occasionally needed, helping
reduce his anxiety and regain a feeling of control.
In between therapy sessions, there was lots of time in
the playroom loaded with games and toys.
For several months, the Brown family rebuilt their lives
around Alex’s needs. During the week, Amy stayed with
Alex, attending therapy sessions and helping him stay
motivated. While he napped, she telecommuted to her
job as a recruiter for Dick’s Sporting Goods. Eric
continued to teach and cared for daughter Abby during
the week, then stayed weekends with Alex while Amy
was home with Abby. “These are fantastic, thoughtful
parents,” says Dr. Brandys.
Gradually, Alex was weaned from the ventilator except
for naps and overnights. He became strong enough to
sit, then progressed from a supportive stander to a
special braces-and-walker combination that helped his
brain and spine remember what walking felt like. A
high-tech bike used electric stimulation to exercise
muscles he couldn’t move himself. In between, he
zoomed around the corridors of The Children’s Institute
in his customized wheelchair. Therapeutic recreation
specialist Melissa Fryman, CTRS, took him outdoors to
page 6
During his four-month stay at The Children’s Institute,
Alex’s sense of humor and quick wit emerged. When
asked to name words starting with particular letters, his
reply to “Z” was a huge grin and “Zamboni!” All the
Browns are major Pittsburgh Penguins fans, and even at
age 4, Alex knows the names and numbers of the players
and is always happy to chat about the latest game results.
Over time, he came to know more medical terms than
any young child should have to, but he deals with them
with a child’s charm. Talking about a “granuloma”
inflammation he had, Alex says “granny-oma.”
As the time to return home neared, a therapy team
visited the family’s house to help the Browns plan
accommodations for Alex.
An outpatient physical and occupational therapy
schedule at The Children’s Institute’s Wexford satellite
was set up. (The Children’s Institute’s outpatient
services are the only ones in the region accredited by the
Commission on the Accreditation of Rehabilitation
Facilities.) In-home nursing care was arranged because
Alex still has medical needs, including part-time use of
the ventilator and the feeding tube.
Melissa had told Amy and Eric about Mighty Pens sled
hockey and Miracle League baseball, full-fledged
sports for people with disabilities, and the Browns
immediately signed Alex up for both. He’s the youngest
player on both teams.
Alex is home now and continuing to make great
progress. Amy says, “You get through something like
this with faith and support from the people you love and
from people like the team at The Children’s Institute.
They were great. They saw what we see in Alex — a
strong, brave kid who beats the odds.” ■
To learn more about the Spinal Cord Injury Rehabilitation
Program, please contact Patrick Quirk at 412.420.2115
or [email protected].
page 7
For information on making a gift in support
of The Hospital at The Children’s
Institute, please contact Michele Mehal at
412.420.2204 or [email protected].
It’s Back
to School
Cheerful greetings. Big smiles. Colorful new outfits. It’s
everything you’d expect from the first day of school. But look
a little closer, and you’ll see this is no ordinary first day.
Because this is no ordinary school.
By 10 a.m., there’s none of the first-day confusion or
disorder you might expect. As you walk around, all you
see are kids, teachers and aides working together —
productively, smoothly, even joyfully — as if they’ve
been in session for days or even weeks.
This is The Day School at The Children’s Institute,
and before students came back, the staff worked long
and hard to become familiar with each one’s abilities,
challenges, needs, likes and dislikes.
page 8
“We make the best use of the kids’ time here,” says Bill
Bauer, MEd, CRC, who has just retired as Chief School
Administrator (please see story on page 11). “We want
them to be learning, growing and enjoying every minute
they’re with us, so we do everything we can to make that
happen.”
The Day School offers its students everything you’d
expect from any good school.
page 9
A fond farewell
The curricula — a combination of functional academics
and life skills — and teaching strategies are carefully
tailored to each student.
meet that child’s needs. The districts are very cognizant
of their responsibilities to the kids. They know what they
can do, and they know what we can do.”
Computers are readily available in each classroom, and
sophisticated accessibility devices (such as switches
and alternative keyboards) make the technology userfriendly.
Funding is usually provided by a combination of support
from the state and the student’s school district, which
also provides transportation.
There are spring formals, volunteer opportunities,
student-created decorations in the hallways and even a
school store staffed largely by students.
But, additionally, The Day School, licensed by the
Pennsylvania Bureau of Private Academic Schools,
approved by the State’s Bureau of Special Education
and accredited by the National Commission for the
Accreditation of Special Education Services, offers
everything students need to meet the challenges posed
by significant disabilities.
Most of the students have cerebral palsy and other
neurological impairments, while some are severely
affected by autism. Bill says, “The level of acuity has
certainly risen over the years, and, today, our students
are much more challenged. Many require tube feeding,
many require complete personal care and many need
assistive communications devices to be able to express
themselves.”
At The Day School, the staff-to-student ratio is
exceptional — 3:8 in most classrooms, and, in the
classrooms for students with autism, 3:6 — which allows
for highly individualized care and teaching.
Students who need physical, occupational, speech/
language and other therapies receive them regularly.
The Day School’s staff includes expert therapists, and
facilities include dedicated treatment areas. Social
workers, nurses, psychological services, dietary experts
and other supports are always available.
“Our approach is transdisciplinary and completely childfocused,” says Bill. “We make sure that each student
has absolutely everything he or she needs to achieve the
greatest independence possible.”
“I am so proud of what we do here.” ■
To learn more about The Day School, please contact Cheryl
Fogarty, EdD at 412.420.2300 or [email protected].
Students come from school districts across Southwestern
Pennsylvania. Bill says, “A student is referred to us
when a district can’t provide an appropriate program to
page 10
of The Day School at The Children’s Institute,
please contact Michele Mehal at 412.420.2204
“Forty-one fabulous years,
I was never bored for one
minute, and I have a low
boredom threshold!” Bill
Bauer, who retired this
summer as Chief School
Administrator, smiles as
he describes his tenure at
The Day School.
Bill began at The Day School as a teacher, and after just
three years was appointed to head the school in 1968.
There were only seven classrooms, and the only
“enrichment” course was art. “So much was different,
but what many people are surprised to hear is that we
have always enrolled kids with autism. That’s not
something new for us,” Bill says.
Bill has spent the last 38 years shaping the school into an
entity that’s respected across the country — and beyond.
Bill and members of the staff are often invited to present
at national and international conferences, and visitors
from afar come to The Day School to see how its
transdisciplinary approach helps kids achieve their
greatest possible independence.
“The administration here has always granted The Day
School the honor of recognizing that we know what
we’re doing,” Bill says. “We’ve been encouraged to
implement best practices and to be wildly creative in our
approach to working with these terrific kids.”
Of what is Bill most proud? He responds instantly: “Two
things. First, the staff — they’re superb. You won’t find
their equal anywhere. Second, the fact that this is the
most child-focused school I’ve ever seen. I’m a
commissioner for the accrediting body for special
education schools, and I’ve learned that nobody else
centers everything on the kids the way we do.”
Bill’s not retiring completely, he’ll continue his awardwinning work as a Carlow University adjunct faculty
member. That work includes supervising student
teachers in special education, and one of the worksites
will be The Day School.
President and CEO David Miles says, “Bill’s energy,
intelligence and love and respect for the children, along
with his discernment in selecting staff members, are
legendary. We’ll miss his daily presence, but what he’s
built is here to stay, and that’s good news for kids with
special needs.”
A welcoming hello
Bill Bauer’s successor
at The Day School is
Cheryl Fogarty, EdD,
formerly Director of the
Allegheny Intermediate
Unit’s
Educational
Services and Support
Division. She’s not a
stranger to The Day
School because in 1980
Bill hired her as a special education teacher. She taught
and then supervised at The Day School for 12 years.
“I’m greatly looking forward to being back,” she says.
“The Children’s Institute has always been a special
place to work. There are high expectations of the staff
and the support to meet those expectations.”
Dr. Fogarty says her first priority will be to listen and
learn, then make recommendations about how to move
forward.
Bill says, “As a teacher and administrator, Cheryl
Fogarty has high standards and is wonderfully childfocused. I think she’ll be fabulous.”
page 11
It Takes a Village
There’s an old saying that “it takes a village to raise a
child.” One Lawrence County couple has helped raise
so many children that it could make a village.
When Nan and John Beachem married in 1983, they
didn’t plan on a village of kids. They started their own
family, and by 1991, they had two daughters and a son.
Then a speaker at their church described the need for
temporary foster parents for newborn babies. “It sounded
great, sitting and rocking a child I didn’t have to give
birth to,” Nan recalls with a smile.
For several years, the Beachems gave many infants a
great start on life, then turned them over to joyful adoptive
parents. Along the way, they had a fourth child of their
own. Life was going as expected in the sprawling
contemporary ranch in Portersville.
Things changed in 1997 when a birth mother whose
parental rights had been terminated asked them to adopt
her infant daughter. They agreed, and Shaelyn joined the
family as the first adoptive Beachem child. An enthusiastic
athlete, Shaelyn has just entered 8th grade.
As the years passed, the Beachems continued to foster
infants, one of whom was Tessa, who came with what
they were told was a cold. Sadly, it was soon rediagnosed
page 12
as a fatal degenerative neurological illness caused by a
missing enzyme.
“WHEN A CHILD IS HELPLESS, YOU JUST DO IT”
Tessa needed extensive care. Nan and John had no
medical background — he supervises the installation of
stone floors, and she’s a full-time mom who had worked
as a design consultant — but training for foster parents is
provided. Nan recalls, “If you had asked us, we’d have
thought we couldn’t do it. But when a child is helpless,
you just do it, and you do it with love.”
Tessa, who the Beachems adopted shortly after her
diagnosis, far outlived her life expectancy, but, sadly,
succumbed to her illness at age 7.
By that point, the Beachems knew that they were capable
of caring for medically fragile children, so they turned to
Project STAR because of its program in which resource
families foster and, sometimes, adopt kids with significant
medical needs. Many of the kids in the Medical Foster
Care program are awaiting transplants at Children’s
Hospital of Pittsburgh of UPMC.
page 13
waitingchildrenprofiles
Children shine brightest in families. Whether the goal is adoption or reunification with birth
families, Project STAR does everything possible to place children with safe, nurturing, forever
families. These children are just two of the many who are waiting for homes to call their own.
Cecilia, 14, is the kind of young woman people describe
as “awesome.” Once she gets to know someone, she can
be delightfully talkative. She loves shopping and
listening to music, and she’s an accomplished knitter. A
9th-grader, Cecilia excels in school and wants to become
a veterinarian for house pets. Cecilia would do well in
either a single-parent or two-parent family; she just
wants to feel safe and loved.
Kim Majors, manager of Project STAR’s Beaver County
office, says, “Some care routines are complex, but excellent
training is provided. What it takes is the willingness to
learn. Medicaid covers medical costs, a stipend covers
things like food and clothing and what these wonderful
families provide are priceless time and love.”
Through Project STAR, the Beachems continued to foster
kids with medical issues. Dominick, who’s now 6 and
recently adopted by the family, had severe seizures,
which have resolved since his infancy. He still has a
feeding tube, and has pervasive developmental disorder
(PDD).
Two other children who came to the Beachems through
Project STAR are awaiting transplants. Now ages 4 and 3,
they’re expected to be available for adoption soon, and
the Beachems will become their parents. Both kids have
complex medical routines — the 3 year old essentially
has no digestive system at all, and the 4 year old requires
IV fluids every night. Nurses help during most days, and
Nan and John handle overnights. Danielle Sebbens, a
nurse practitioner at Children’s Hospital of Pittsburgh of
UPMC’s Intestinal Care and Rehabilitation Program,
says, “These are caring people who do a wonderful job
with the kids. And it’s a great family. All the kids love
each other and their parents.”
includes one birth child, two adopted children and three
foster children.
The household is calm, spotless and clearly happy.
Medical supplies are neatly stored in the kids’ rooms,
which are charmingly decorated. Nan greets visitors with
a warm smile.
“They have a wonderful, old-fashioned parenting style,”
says Project STAR’s Kim Majors. “The kids all have
age-appropriate responsibilities, and Nan and John move
them toward healthy independence in an atmosphere of
great support and love.”
In all, the Beachems have helped raise 86 children,
including many with difficult medical conditions. And
they’re not done yet: while the Beachems aren’t planning
further adoptions, they’ll continue fostering medically
fragile children.
Nan says, “People ask us how we do it, and we tell them
there’s plenty of support — from Project STAR, from
Children’s Hospital, from other families. You can do things
you never dreamed you could, and it will be worth it.”
Then she smiles and adds, “We never expected to care for
so many kids. But God has plans, and we’re just along for
the ride.” ■
FOSTER SON, BIG BROTHER
Eighteen-year-old Joe, a high school senior, also is part of
the family. Although legally an adult, Joe chose to stay in
foster care through high school and asked Project STAR
to place him with the Beachems. He’s a gentle big brother
to the little kids.
To learn more about the Medical Foster Care Program,
please contact Cathy Pahel at 412.244.3056
Nan and John’s youngest birth child, Hunter, is 16 and
still lives at home, so at the moment, the household
page 14
For information on making a gift in
support of Project STAR at The Children’s
SHELLY
energetic and outgoing
very creative
likes football
If you’d like to learn more, please contact Russ McCurdy with
Project STAR at 412.417.7136 or [email protected].
Born 3/25/96
PAE #C-51AT34
Shelly is a lovely, lively 16 year old, energetic and
outgoing. Just starting 10th grade, she enjoys school and
is making good academic progress. Favorite pastimes
include writing poetry, drawing, doing crafts and
reading, especially the Twilight series and Harry Potter.
Shelly is very eager to have a permanent home with a
forever family who will love and comfort her. All family
types will be considered.
Cecilia is legally free for adoption.
All families will be considered.
CECILIA
16 years old
14 years old
loves music
and shopping
If you’d like to learn more, please contact Debra Henry with
Project STAR at 724.775.0209 or [email protected].
excellent student
Born 7/30/94
PAE #C-4200003
talented knitter
Shelly is not yet legally free for adoption.
For more information about Shelly and Cecilia, visit www.amazingkids.org. Click on Project STAR, then on Family
Placement Services. Scroll to Kids Waiting and click.
SPOTLIGHT ON MEDICAL FOSTER CARE
Medical foster care is a specialty of Project STAR at
The Children’s Institute, which contracts with public
child welfare systems locally, as well as in Philadelphia,
Texas and West Virginia, to place medically fragile
children in Western Pennsylvania homes for fostering
and, sometimes, adoption by loving families.
fully understand that the children have significant
medical issues that may involve multiple trips to the
hospital and doctors’ offices, both planned and
unplanned, as well as medications and routines that can
be complex, and they are willing to do whatever it takes
for the child.”
“These families are exceptional,” says Cathy Pahel,
Project STAR’s Manager of Placement Services. “They
“We are always looking for additional resource families
willing to provide loving homes for these children.”
page 15
The Nimick Family Therapeutic Garden
About to Take Root - and Bloom
After extensive planning, The Children’s Institute’s new Nimick Family Therapeutic
Garden is becoming a delightful reality that will soon benefit patients, families,
staff and neighbors.
The Nimick Family Therapeutic Garden will transform the Shady Avenue
façade of The Children’s Institute’s Squirrel Hill campus.
Ground was broken in late spring for the 10,000-squarefoot garden which will span the entire Shady Avenue
façade of The Children’s Institute’s main building. Detailed
planning occupied much of the summer, and now the work
is underway with a light up event planned for winter and a
dedication in the spring.
Full planting will take place this autumn and next spring
when the garden will begin to burst with color and scent.
As part of the planning process, Pittsburgh’s New Dawn
Garden Design, a respected local firm experienced in
designing therapeutic gardens, did intensive research that
included focus groups with patients, families and staff.
New Dawn founder and CEO Christine Astorino says,
“Many of the garden’s features, including the treehouse,
were requested by young patients. And, of course, the
garden’s whole design emphasizes accessibility. For
example, the fountain will be activated by putting
pressure on an in-ground sensor that can be done by
rolling a wheelchair over it. And the children’s planting
beds will be raised above ground level so they can be
reached from wheelchairs and walkers.”
The garden’s elements are linked by a meandering path
wide enough for two wheelchairs to pass and smooth
enough for IV poles to travel. The path will feature
ornamental tiles acknowledging generous donors, as will
the bricks in several patio-like areas. Sunflowers, in
design elements and in planting beds, are a major theme
of the garden. Cheerful and hopeful, the sunflower is the
signature flower of The Children’s Institute. It’s also
mentioned in a famous inspirational quote from Helen
Keller: “Keep your face to the sunshine and you cannot
see the shadow. It’s what the sunflowers do.”
Special evening lighting will make the garden safe and
inviting after the sun sets. Even in a place as warm and
welcoming as The Children’s Institute, having an ill or
injured child is one of life’s most stressful events, and
after young patients are tucked in for the night, their
parents can relax and restore their spirits in the garden.
The garden will offer additional benefits. In therapy
sessions, the garden can, for example, help patients develop
strength and balance as they move around, or fine motor
skills as they work with the plants. For The Day School, the
page 16
“Keep your face to the sunshine and you cannot
see the shadow. It’s what the sunflowers do.”
-Helen Keller
garden will be a venue for hands-on learning about science,
nutrition and even entrepreneurship. The school’s students
are famous for their fundraising sales, and they might
decide to run mini-farmers’ markets.
Neighbors will be invited to enjoy the garden, just as they
do The Children’s Institute’s welcoming playground.
David Miles, President and CEO of The Children’s
Institute, says, “The Nimick Family Therapeutic Garden
is an extraordinary addition to our facility, and all of us
greatly look forward to seeing our amazing kids and
families benefiting from it.”
NIMICK FAMILY HONORS PARENTS WITH LEAD GIFT
FOR GARDEN
The million-dollar gift that is making the new therapeutic
garden possible was given by the Nimick Forbesway
Foundation, whose trustees are Charles L.H. Nimick of
Great Falls, VA; Victoria Nimick Enright of Madison,
WI; and Kit Nimick Carrasco of Aspinwall.
The three are the adult children of the late Florence and
Thomas Nimick. Florence Lockhart Nimick was a longtime member and two-time president of The Children’s
Institute’s Board of Directors. Her husband, Thomas
Howe Nimick Jr., was a member of the Men’s Advisory
Board and later a member of the Board of Directors.
page 17
boardofdirectors
Kit Nimick Carrasco says, “The Children’s Institute
was our parents’ mutual interest and passion, and
therefore very much a part of our lives as we grew up. I
remember going there often with my mother for her
volunteer work and saying hello to the kids we’d see.
Later, my sister and I volunteered at the summer camp
— and still later, I often took my own kids to the
playground. So helping to make the therapeutic garden
possible is a wonderful way to honor our parents and do
something good for patients and families.” ■
A special thank you to Christine Astorino of
New Dawn Garden Design for the garden renderings.
Nimick Forbesway Foundation trustees Kit Nimick
Carrasco and Victoria Nimick Enright are joined by
Kit’s daughter, Natalie Austin, and Jack Kessler, Esq.,
Secretary-Treasurer of the Foundation.
To learn more about The Nimick Family Therapeutic
Garden, please contact The Children’s Institute at
412.420.2400 or visit www.amazingkids.org.
of The Nimick Family Therapeutic Garden at
The Children’s Institute, please contact Helene
Conway-Long at 412.420.2201
Front ro w, left to right: John K. Thornburgh, vice chair; Maureen B. Cohon, secretary; Joseph E. Imbriglia, MD, chair;
Susan Baker Shipley, treasurer; Michael J. Hannon, vice chair; Back row, left to right: F. Brooks Robinson Jr.; Merrill P. Stabile;
Ellen P. Kessler; Nita Wadhwani; N. John Cooper, DPhil; B. Gordon Nelson III; David K. Miles, president and chief executive
officer; Anne V. Lewis; Allan MacDougall III; Cynthia D. Sharpira; Ann M. McGuinn; James W. Marczak; Absent from photo:
Patricia Suzanne Chesko; John R. Denny; Carolyn D. Duronio; J. Keefe Ellis Jr.; Lisa C. Fagan; Pamela W. Golden; Pradeep K. Khosla,
PhD; Michele M. McKenney; Morgan K. O’Brien. (2009-2010 active board)
The Children’s Institute is supported, inspired and instructed in many different ways by volunteer
YOU CAN BE A PART OF OUR GARDEN TOO
It’s not too late to be involved in this wonderful
addition to The Children’s Institute — and the
community! The generous gift from the Nimick
family is turning the garden plans into reality, but
many beautiful features and amenities are still
available to be named in honor or memory of loved
ones. They include:
Patio Area Bricks
Additionally, naming opportunities are available for
larger features such as the enchanting accessible
treehouse, children’s planting gardens and charming
sunflower pavilion.
Of course, support at any level is most welcome and
will help maintain the garden for patients and families
for generations to come. ■
$250
Dedicate a garden walkway or patio-area brick with your
name or the name of a loved one.
Decorative Paver Tiles
$2,500
Add your name or the name of a loved one to our
meandering walkway with a beautiful decorative tile.
Comfortable Benches
$5,000
Any Amount
You can help keep the garden beautiful and flourishing
with your gift to support for care and maintenance.
page 18
THE CHILDREN’S INSTITUTE
BOARD OF DIRECTORS
2010-2011
CHAIR
Joseph E. Imbriglia, MD
VICE CHAIRS
Michael J. Hannon
John K. Thornburgh
SECRETARY
Lisa C. Fagan
TREASURER
Michele M. McKenney
PRESIDENT AND
CHIEF EXECUTIVE OFFICER
David K. Miles
Engraved with your name or the name of a loved one,
these benches provide the perfect place to relax and
enjoy the garden.
Garden Care and Maintenance
leaders who donate their time, expertise and personal resources.
Patio-Area
P
ti A
Brick
B
i and Paver Tile
DIRECTORS
Patricia Suzanne Chesko
N. John Cooper, DPhil
John R. Denny
Carolyn D. Duronio
J. Keefe Ellis Jr.
Pamela W. Golden
Ellen P. Kessler
Pradeep K. Khosla, PhD
Allan MacDougall III
James W. Marczak
Ann M. McGuinn
B. Gordon Nelson III
Morgan K. O’Brien
F. Brooks Robinson Jr.
Cynthia D. Shapira
Susan Baker Shipley
Merrill P. Stabile
Nita Wadhwani
ASSOCIATE MEMBERS
Paulette P. Apostolides
Nancy M. Armstrong
Thomas J. Bachman
Burnett G. Bartley Jr.
Mary Florence Brown
Mrs. Davis C. Burroughs Jr.
Henry C. Cohen
Sandy W. Côté
Ann H. Cutter
George M. Egan
Sheila C. Fine
page 19
Henry J. Gailliot
Gus P. Georgiadis
Lillian H. Goldsmith
George C. Greer
Paul A. Heasley
Audrey H. Hilliard
Joan M. Kaplan
Marcia L. Keehn
Eileen L. Lane
Barbara K. Nelson
Maureen S. O’Brien
Judy G. Papernick
James S. Pasman Jr.
Ruth S. Perfido
Patricia R. Rooney
Jean McD. Scott
Lea H. Simonds
Ann E. Sullivan
Harry A. Thompson II
Ginny Thornburgh
Jamee W. Todd
James W. Ummer
Farley W. Whetzel
Susan C. Williams
Margot B. Woodwell
Meet an 8-Year-Old Philanthropist
donorprofile
A s Vivaldi’s lovely notes float in the sunshine, passers-by are enchanted by the young
violinist playing on the busy sidewalk. She is Victoria Fusco of North Carolina. She
is exceptionally talented, and at age 8, she is one of The Children’s Institute of
Pittsburgh’s newest – and possibly youngest – donors.
he story begins when 16-year-old Phillip Fusco II,
Victoria’s brother, came to The Children’s Institute
for treatment of Prader-Willi Syndrome, a rare
genetic disorder whose symptoms can include food
obsession, extreme obesity, low muscle tone and
emotional and behavioral issues. Untreated, the syndrome
can be fatal. The Children’s Institute has one of the few
inpatient programs in the world.
Angela, came to visit their son and work with the staff so
they could continue Phillip’s progress at home.
For Phillip, early diagnosis plus excellent medical care and
family support had helped mitigate some symptoms. But
his hunger is extreme enough that the family keeps food
locked away, and he has some significant behavioral issues.
Meanwhile, young Victoria decided to do something
special for the place that was helping Phillip, her big brother
and hero. Since age 4, Victoria has been studying violin
with the Suzuki method, and it is clear that she is gifted.
T
Then, a longtime orthopedic issue flared, and Phillip
went back to North Carolina for surgery. Says his dad, “It
was a very difficult time. He had to be off his meds and
surgery is never easy, but as soon as possible, he returned
to continue his treatment.”
At The Children’s Institute, Phillip’s inpatient stay was
productive with medically managed exercise, medications,
a diet program and psychotherapy. His parents, Phillip and
Her parents helped her apply to a program to enliven
the University of North Carolina’s campus with street
arts. UNC loved her audition and invited her to play.
They provided a sign, an honorarium and permission
to accept tips. Victoria’s parents provided transportation
and supervision.
Victoria immediately decided that half of whatever she
earned would be donated in support of the Prader-Willi
Syndrome Program. The first time she played, she earned
$168, and soon a cashier’s check for $84 arrived at The
Children’s Institute.
“Victoria reminds us that there’s no age
requirement on philanthropy, and we
are very grateful for her generosity.”
“It was an extraordinary gift,” says Helene ConwayLong, Vice President of Institutional Advancement.
“Victoria reminds us that there’s no age requirement on
philanthropy, and we are very grateful for her
generosity.”
Phillip completed his inpatient stay and is now continuing
his treatment program at home. Teachers come from the
local school district, and Phillip and mom Angela work
on his 11th-grade lessons.
Victoria wants to play at UNC again this summer, and she
definitely plans to continue contributing to The Children’s
Institute.
Dad Phillip says, “We are so pleased that she’s decided to
use her musical gift this way. It really makes us proud.” ■
Victoria F
Fusco
page 20
of The Children’s Institute, please contact
Michele Mehal at 412.420.2204
page 21
newsbriefs
newsbriefs
LOSE THE TRAINING WHEELS™
SOME AMAZING IDEAS
BECOME REALITY
Learning how to ride a bike has been a rite of passage
for children for generations and remains one today. At
the third annual Amazing Bike Camp hosted by The
Children’s Institute in conjunction with Lose the
Training Wheels™, children with special needs from
the greater Pittsburgh area got to do just that.
What would you do with $5,000 at work?
Last spring, employees at The Children’s Institute were
invited to submit proposals on how they would spend
$5,000 that would be raised at an event.
Three staff members were chosen from 26 submissions
to deliver three-minute pitches to guests at a benefit
dinner hosted by Casbah Mediterranean Kitchen &
Wine Bar. Guests then voted to decide how the funds
raised that night would be spent.
Jennifer Nasser, permanency specialist at Project STAR,
pitched “Starting Fresh Leads to Success,” providing
clothing, shoes, haircuts and backpacks filled with
school supplies for children to begin the school year.
Stacy Ulrich, special education teacher in The Day
School, proposed a live-feed video camera system that
could be used in the Sheila and Milton Fine Classrooms
for Students with Autism, helping teachers to identify
what classroom conditions cause certain behaviors.
Staff and proposal winners Jennifer Nasser, Stacy Ulrich
and Christy Dawes, DPT, NCS, ATC, “rocked” the
Casbah and received full funding for their amazing ideas.
Donations and pledges totaled $15,000 that night, fully
funding all three projects. “It was an amazing evening,”
said Helene Conway-Long, Vice President of
Institutional Advancement. “We’re so grateful to have
generous friends who believe not only in The Children’s
Institute, but the wonderful ideas that our staff members
have to help our kids reach their fullest potential.”
Christy Dawes, DPT, NCS, ATC, inpatient physical
therapy coordinator in The Hospital, pitched her idea for
an adapted paddling program, allowing young people
with disabilities to learn the water skills necessary to
participate in a life-long activity.
To find out how you can make an impact
on our amazing kids by funding a project
from the remaining proposals, please
contact Michele Mehal at 412.420.2204
This year’s camp was held from Monday, June 14
through Friday, June 18 at the Iceoplex at Southpointe
in Canonsburg, PA. With the aid of specially trained
instructors and help from more than 70 volunteers,
each camper rode modified bikes with rollers rather
than wheels. Through the week, as riding ability
progressed, so did the tapered ends of the rollers,
eventually leading to nothing more than a conventional two-wheel bicycle.
“This camp gives children with special needs a
unique opportunity to learn a skill using adapted
bikes and progressing to regular two-wheel bikes,”
notes Jane Keim, Vice President of Operations at The
Children’s Institute. “Watching them progress as the
week continues never fails to amaze me.”
By the end of the week, 84 percent of campers who
attended the Amazing Bike Camp were able to ride
conventional bikes on their own. But what good does
knowing how to ride a bike do without having a bike to
ride? GlaxoSmithKline Consumer Healthcare, the
event sponsor, addressed that issue by donating a brand
new bicycle to each child at the end of camp.
Malesia Dunn, Director of Communications for North
America at GlaxoSmithKline Consumer Healthcare,
says the camp is a perfect match for the company. “We
are committed to sponsoring programs that will enrich
people’s lives, and this program meets that goal. We
look forward to continuing our partnership with The
Children’s Institute for the 2011 program and hope,
together, we can reach more children and be a part of
their dream of independently riding a bike.”
Many thanks to all those who were instrumental in putting
together the Amazing Bike Camp this year. Information
on the 2011 camp will be available in the spring.
MAKING THE HOLIDAYS BRIGHT
ONE SWEET GESTURE
When a child is alone in a residential treatment facility
or part of a family that is struggling, the holidays can be
a sad or disappointing time.
Based in Pittsburgh’s South Side, Edward Marc is a premier confectioner, and your purchase
of a gift from the company is also a wonderful gift to the amazing kids and families served
by The Children’s Institute.
Project STAR at The Children’s Institute holds the
Annual Holiday Gift Drive to give caring people the
opportunity to transform these children’s holidays. Last
year, a total of 48 generous individual and group donors
made the holidays amazing for 126 kids. Preparations are
already underway for this year’s gift drive.
Want to make a gesture that is doubly sweet? Buy chocolates from Edward Marc
Chocolatier online (www.edwardmarc.com) to give as gifts this holiday season and
The Children’s Institute will receive 20 percent of the sale.
All you have to do is enter promotional code CI09 when finalizing your online or phone
purchase. Order by December 16 to ensure holiday delivery.
page 22
page 23
To find out how you can make the
holidays brighter for some amazing
kids, please contact Rachel Marx at
community
Camp Success
At The Children’s Institute, we pride ourselves on being an active
presence in the community. Camp Success is just one of the many
ways our reach of service extends beyond the four walls of
our buildings.
CAMP SUCCESS
When summer strikes and other kids jet off to summer
camps and vacations, the families of children with
special needs face a dilemma — where can my child go
to enjoy the same summer activities as his or her peers?
The answer is Camp Success at The Children’s Institute.
For more than a decade, Camp Success has been
available for low-income families and families with
children with special needs and their siblings. The camp
provides a place for children from the community who
wouldn’t normally have the opportunity to go to summer
camp to laugh, play and enjoy summertime activities
with other children at no cost to their families. Through
Camp Success, children with special needs are given the
opportunity to experience this summer tradition
alongside their typically developing siblings, an
experience not found at many other camps.
Kim Moran has been sending her son Dominick, 9, to
Camp Success for the past three years and is thrilled
with how much he’s gained from his experience.
This year, Camp Success ran two sessions, from June
21–July 9 and July 26–August 6 for 60 kids between age
6 and 12. Campers were treated with trips to the
Pittsburgh Zoo and PPG Aquarium and a Just Ducky
Tour of the city, as well as visits from The Children’s
Museum, Roxy the Therapy Dog and everyday activities.
The children were also introduced to different character
education themes each day, such as honesty,
trustworthiness and friendship, which the games and
activities centered around.
It’s all part of The Children’s Institute’s efforts to make
sure every child in our community has the opportunity
to have an amazing summer. ■
To learn more about Camp Success, please contact Amy
Haid at 412.420.2316 or [email protected].
“Since coming here, Dominick has matured a lot and his
relationships with his peers have gotten a lot better,”
Kim said. “He’s learned a lot about how to be kind to his
friends and taking turns. He loves swimming and he
loves the field trips. We love it there.”
page 24
For information on making a gift in
support of Camp Success at The Children’s
page 25
community
calendar
September
October
Monday, September 6
Saturday, October 2
10:00 a.m.–4:30 p.m.
Labor Day – NO SCHOOL
for students of The Day School
13th Annual Fall Harvest Day
There’s fun for the whole family with hayrides, music,
dancing, games and more. Project STAR families are invited
to attend at no cost. RSVP to Rachel Marx at 412.244.3051
or [email protected] by Friday, September 24.
Location: Hartwood Acres, Pittsburgh
Wednesday, September 8
7:30–8:00 a.m. – Registration/Refreshments
8:00–9:00 a.m. – Speaker
Grand Rounds “Service Satisfaction and FamilyCentered Care Study Outcome”
Presented by Jennifer Benger, PsyD, Director of Psychology,
The Children’s Institute; Joyce Salls, OTD, Assistant Professor
and Director of Occupational Therapy, Chatham University;
Joseph Shriber, PT, PhD, PCS, Associate Professor of Physical
Therapy, Chatham University. Continuing Medical Education
(CME) credits available. No registration required. For more
information, call 412.420.2270.
Location: The Children’s Institute,
1405 Shady Avenue, Pittsburgh
Monday, October 4
6:30–8:30 p.m.
Adoption, Foster Care
and Respite Care Information Session*
Monday, October 11
Columbus Day – NO SCHOOL
Monday, September 13
6:30–8:30 p.m.
Monday, October 11
6:30–8:30 p.m.
Location: Project STAR, 1598 Virginia Avenue, Monaca
Monday, September 20
6:30–8:30 p.m.
Wednesday, October 13
8:00–9:00 a.m. – Speaker
Thursday, September 23
In-Service Day – NO SCHOOL
Thursday, September 23
6:30–8:30 p.m.
The Day School Open House for parents and guardians
Grand Rounds “Evidence-Based Practice (EBP)
As It Applies to Supervision”
Presented by Cheryl Messick, PhD, CCC-SLP, Associate
Professor of Communication Science & Disorders and
Director of Clinical Education of Communication Science &
Disorders at The University of Pittsburgh School of Health
and Rehabilitation Sciences. Continuing Medical Education
(CME) credits available. No registration required. For more
page 26
Monday, October 18
In-Service Day – NO SCHOOL
November 25 – November 29
Thanksgiving Break – NO SCHOOL
November
December
Monday, November 1
6:30–8:30 p.m.
Monday, December 6
6:30–8:30 p.m.
Monday, November 8
6:30–8:30 p.m.
Wednesday, December 8
8:00–9:00 a.m. – Speaker
Wednesday, November 10
8:00–9:00 a.m. – Speaker
Grand Rounds “TBD”
Presented by TBD. Continuing Medical Education (CME)
credits available. No registration required. For more
Thursday, November 11
Veterans Day – NO SCHOOL
November 20 – November 21
8:00 a.m.–5:00 p.m.
Two-day course: Neuro-Developmental TreatmentBased Therapeutic Aquatics for Pediatrics
Presented by Jane L. Styer-Acevedo, PT, C/NDT, senior
adjunct faculty, Arcadia University. This course is designed
to train physical therapists and occupational therapists
on treatment techniques for use in the pool. For more
information, call 410.583.2490 or 1.888.613.2275.
Grand Rounds “TBD”
Presented by TBD. Continuing Medical Education (CME)
credits available. No registration required. For more
Monday, December 13
6:30–8:30 p.m.
December 23 – January 2
Winter Break – NO SCHOOL for students of
The Day School (students return January 3)
*Project STAR information meetings are a free opportunity
to learn more about adoption, foster care and providing
short-term respite care. Orientations also are available by
private appointment. To RSVP for a meeting or arrange a
private orientation, contact Dori Williams at 412.244.3048
page 27
MISSION
The Children’s Institute is an independent, licensed nonprofit
organization located in the Squirrel Hill section of Pittsburgh that is
dedicated to promoting the well-being of children, young people and
their families and to providing services that meet their special needs.
making wishes come true
The Children’s Institute was designed specifically as a rehabilitation
facility, and its administration and staff are committed to increasing
accessibility for all persons. If you have accessibility concerns, please
call The Children’s Institute at 412.420.2485.
You can have an amazing effect on the lives of children with special needs by helping to
purchase vital equipment. The Children’s Institute’s Amazing Wish List includes small to moderate
requests that can be fulfilled with a single gift ranging from $100 to $5,000. Your donation will go
SERVICE
toward the Amazing Wish List item of your choice, and as a donor, you will be listed in our annual
The Children’s Institute of Pittsburgh does not exclude, deny benefits
to, or otherwise discriminate against any person on the grounds of
race, color, nation of origin, religious creed, disability, ancestry,
sex, age or sexual orientation in employment or in admission to,
participation in or receipt of the services and benefits of any of its
programs and activities, whether carried out by The Children’s
Institute of Pittsburgh directly or through a contractor or any other
entity whom The Children’s Institute of Pittsburgh arranges to carry
out its programs and activities.
report with the wish you fulfilled.*
Tidal Wave® 615
Capnograph and Accessories
Common Sense Parenting® Kit
When a child has issues with breathing,
measuring levels of carbon dioxide in
his or her lungs is crucial. If this wish is granted for
The Hospital, caregivers will be able to use this tool
to better assess the pulmonary status of patients as
they are weaned from ventilators or when they are
sleeping. The capnograph also will aid in diagnosing
underlying problems in an emergency and may
prevent the need for ordering costly sleep studies.
Cost of wish: $4,000; quantity needed: 1
SpringBoard Lite®
Communication Device
Many children who come to The Hospital
at The Children’s Institute have trouble
communicating verbally. Communication devices
like SpringBoard Lite ® help these children by
speaking for them, stringing words together and
enabling them with the ability to express their needs
and “talk” with their family, peers and community.
Project STAR’s Intensive Family Support
Services coordinators help to strengthen
the ability of families to care for their
children through preventative services and parent
education. By attending parenting classes, families
learn how to effectively manage their families, deal with
crises that may arise and improve parent-child
relationships. Materials for this instruction include
parenting DVDs, books and training kits for parents and
educators. This wish will provide 20 classes.
Cost of wish: $2,250; quantity needed: 1 kit
CatEye Recumbent GameBike Pro®
Riding a bike is fun. But when you have
to do it for therapy, it can feel tedious.
Having equipment designed with a little
extra fun built in helps to make therapy at The Hospital
less mundane. The CatEye Recumbent GameBike Pro®
is an exercise bike system that encourages exercise
through age-appropriate video games powered by
bicycling. This motivates patients to work harder to
win the game and achieve their therapy goals.
This policy statement is in accordance with the provision of Title VI
of the Civil Rights Act of 1964, Section 504 of the Rehabilitation
Act of 1973, the Age Discrimination Act of 1975, the Americans
with Disabilities Act of 1990, Regulations of the U.S. Department of
Health and Human Services issued pursuant to the acts, Title 45 Code
of Federal Regulations Part 80, 84, 91 and other applicable Federal,
State, and Local Laws and Regulations.
CREDITS
David K. Miles, MEd, MPM
President and CEO
412.420.2398
[email protected]
Helene Conway-Long, MBA, CFRE
Vice President, Institutional Advancement
412.420.2201
[email protected]
Roya Kousari, MAM
Marketing and Communications Director
412.420.2202
[email protected]
Learn more about additional wishes, visit www.amazingkids.org/wishlist.
*If the final cost of an item is less than the amount contributed, any remaining funds will be dedicated to complementary
needs or, if not possible, released into the general fund.
For more information about donating funds for the purchase of an item(s) from the Amazing Wish List,
please contact Michele Mehal at 412.420.2204 or [email protected].
page 28
For more information about this policy, please contact
Administration at 412.420.2400. For more information about
The Children’s Institute, please call 412.420.2400 or log on to
www.amazingkids.org. For TDD use, contact us through
the Pennsylvania Relay Service. Voice: 1.800.654.5988
TDD: 1.800.654.5984.
Writing
Cosgrove Communications, LLC
Design
Engauge
The official registration and financial information of The Children’s
Institute may be obtained from the Pennsylvania Department of
State by calling toll free within Pennsylvania, 1.800.732.0999.
Registration does not imply endorsement.
The Children’s Institute is a 501 (c)(3) nonprofit organization,
contributions to which are tax deductible to the fullest extent
permitted by law.
Photography
Josh Franzos
Harry Giglio
page 29
NON-PROFIT ORG.
U.S. POSTAGE
PAID
PITTSBURGH, PA
PERMIT NO. 748
1405 Shady Avenue
Pittsburgh, Pennsylvania 15217-1350
If you would like to be added or removed from our mailing list, please call 412.420.2203 or
visit our Website at www.amazingkids.org/contact. When you ask to be removed from our
mailing list, The Children’s Institute will make a reasonable effort to ensure you are not
contacted again. The Children’s Institute does not sell, trade or forward mailing lists.
Visit our Website at www.amazingkids.org.
Please recycle this publication when finished.
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One in a Million Back to School It Makes a Village

Transcription

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