Philadelphia Medicine Winter-Spring 2021 - 21

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'I think the thing that's so important to us is we follow them longterm. In my experience, for a lot of families, the diagnosis is a big
part. But it's often what follows after that that is even harder.'
- Dr. Renee Turchi
school. We have a nurse that goes off to talk to their teachers. We'll
obviously treat the medication part. We have an occupational
therapist, physical therapist, speech therapist and social worker.
In our approach, we give them a very comprehensive report that's
integrated with all of our findings. "
The Center staff spends a lot of time with their parents.
" We spend a lot of time going over that report, what does it mean,
what are the interventions? " Turchi said. " A lot of it is helping that
student get the therapies and supports they need, but also helping
family and school functioning, the stress on the family and the
behavior. We sometimes see families fall apart. This takes a toll on
the family and their ability to help support their child.
" When kids have support, their confidence builds and they are not
frustrated, and they are not perceived as being defiant, " Turchi said.
" We just find that the comprehensive, integrated approach, where
we are coordinating care and working with all the team members,
often those therapists spend the most time with that child during
the course of the day, " she said. " And they are building confidence
as opposed to constantly being told they are doing something wrong.
Or being bullied at school because they don't understand the social
norms of the playground. "
It's important the school is on board with the Center's intentions
and plans.
" And at home, just having a reset of expectations, putting the
supports in place, " she said.

Developmental delays
In a recent story in the Philadelphia Inquirer, Turchi was quoted
about Robert McCloud, diagnosed with FAS.
The article noted that alcohol caused Robert's birth defects and
developmental delays, according to Turchi.
Turchi also pointed out that Andrew Cambridge, a cartoon artist
from Willow Grove, Pa., was diagnosed with the syndrome in his
late teens, and was also in the newspaper article.
Andrew was 17 when Turchi first met him and diagnosed him,
she said.
He's in a day program, writing and drawing. Andrew graduated
from high school.

Andrew, adopted at 6 months of age, has power of attorney, while
the family helps support him. He didn't lose his complete rights.
Turchi said Andrew wants to be a cartoon artist.
" We are trying to get someone on the Cartoon Network to get
in touch with him, " she said.

A mentor
Turchi recognizes Kathy Mitchell, NOFAS vice president and
spokesperson, as a mentor.
Mitchell's daughter Karli Schrider created the NOFAS logo in
1995 at the age of 22, according to the NOFAS website.
Karli was a regular volunteer at the NOFAS office.
Mitchell noted: " She helped to prepare information packets on
FASD that were mailed all over the United States. Karli (who lives
with FAS) loves to color pictures. Every staff person at NOFAS
proudly displayed their own personal portrait that Karli created
for them with paper and crayons. Karli's portraits were sure to be
colorful and her unique art style always captured the innocence and
perspective of a very young child. Karli at age 22 was developmentally
around six years old.
" One afternoon, we asked Karli to create a picture of NOFAS.
That's the day we knew what our new logo would be! She managed to
capture everything that NOFAS was trying to get across to the public:
That FASD is a lifelong developmental disorder, and that NOFAS
is an organization that is hopeful and seeks to inspire all to create
a better world for individuals and their families living with FASD.
" Karli continues to volunteer for NOFAS and inspire us all! "
" Folks that not only have helped children and taught people like
myself, they dedicated their lives to advocacy in this arena to help
move this needle ahead, " Turchi said.
One of her taglines, she said, is the bad news is that business is good.
" This program should cease to exist, " Turchi said. " This is 100%
preventable. "
For more information about FASD, visit www.bit.ly/FASData.
For more information about the Center for Children with Special
Health Care Needs at St. Christopher's Hospital for Children in
Philadelphia, visit www.bit.ly/HospitalChild. *

" The key with him is that Andrew has a supportive family, " she
said. " It made a difference. "
Winter-Spring 2021 : Philadelphia Medicine 21

https://philamedsoc.org/ http://www.bit.ly/FASData http://www.bit.ly/HospitalChild

Philadelphia Medicine Winter-Spring 2021

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