FOR BREAKING NEWS VISIT WWW.QNS.COM MAY 21, 2020 • WELLNESS • THE QUEENS COURIER 27
wellness
New Yorkers with developmental
disabilities adapt to life at home
BY BEN VERDE
editorial@qns.com
@QNS
Children and adults with developmental
disabilities have found their routines
thrown off dramatically by the coronavirus
pandemic, leaving those who care for
them struggling to fi ll the gaps in their
days at home.
For Chrissy Young, a Suff olk County
mother-of-three, New York’s stay-athome
order has meant the end of the
predictability that her sons Nicholas
and Michael, who both have level-three
autism, rely on.
“You and I can say, ‘Oh, we’ll go with
the fl ow,’” said Young. “But when you’re
dealing with people with disabilities, that’s
not in their playbook.” Nicholas, 10, and
Michael, 8, now center their days around
Zoom calls with their school — the Elija
School in Levittown.
While having something structured to
anchor them has been a lifesaver, Young
said, human contact from teachers and
classmates has been impossible to replicate.
“Nothing is like seeing people, and holding
people, and hugging people,” Young
said. “But we’re doing the best we can.”
Compounding the issue, her sons have
had to go without seeing the people they
formed connections with at school — and
with little to no explanation.
“One day they saw them and one day
they didn’t,” Young said. “I cannot imagine,
for my boys, what that was like.”
Young resists the idea that her sons are
getting “used to” the new normal, but
admits that there is far less trepidation
now than when their routine was fi rst
interrupted roughly six weeks ago.
“If they were able to walk back into that
school they would be doing cartwheels,”
she said. “But I think the fear is less. Th e
more you do the same thing, there’s a little
less fear.”
To keep her kids — who are both
non-verbal — occupied without having
anywhere to go, Young and her husband
have taken them on drives through
Suff olk County, and opened up their
backyard pool for them to play in aft er
remote learning, but there’s only so much
they can do while hunkered down.
“My husband and I have learned we’re
really not that exciting,” she said.
Young attributes what success her sons
have had during the pandemic to the Elija
School, which has not only given students
structure during the weekdays, but has
also provided parents with training.
“If my boys were not in Elija, I don’t
know what this would look like,” she said.
While Michael and Nicholas have virtual
learning to anchor their days, structure
has been harder to maintain for adults
with developmental disabilities who are
not in a school program, according to
Lynne Koufakis, who chairs the board of
Life’s WORC, a network of group homes
in New York City and Long Island.
Organizations like Life’s WORC have
found themselves on the front lines of the
COVID-19 pandemic but for Koufakis,
who has two sons at home with developmental
disabilities, the obstacle is twofold.
“It’s extremely challenging,” she said.
“It’s frustrating. It’s mentally and physically
exhausting.”
Many parents have had to rely on technology
to help get them through these
uncertain — and unstructured — times.
“Th e computer is great, and a curse at
the same time,” said Koufakis, whose children’s
caretakers still take them out for
exercise most days, but who are stuck
spending the rest of their time inside in
front of a screen. “Th ey get addicted.”
While sheltering in place has not been
easy for everyone, Young acknowledges
that those with developmental disabilities
are going through a completely diff erent
trial of their own.
“I cannot imagine — disabled people
who cannot relay or express the fear that
they have, the emotion that they have,”
she said.
Th is story is part of an ongoing series
about group homes on the front lines of
the COVID-19 crisis, and the pandemic’s
impact on those with developmental
disabilities.
The Young family has had to adapt to life at home during the coronavirus pandemic. (Chrissy Young)
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