YOUR SPECIAL CHILD
Help Is On the Way
Here’s how to accept it
BY ERICA RIMLINGER
Taking the time to
come up with a list of
concrete tasks ahead
of time allows parents
to accept help offers
when they arise, and
it can lessen a family’s
reliance on the
go-to response of
“we’re fine.”
‘We’re not fine’
Michele P., whose daughter has hearing
loss, says people offered to help after her
daughter had surgery, but she was reluctant
to accept because she didn’t want to incon-
venience them. Instead, she told those who
offered, “We’re fine.”
Shepley advises parents who may feel
their lives are too complicated for outside
help to “remember that people ask to help
because they want to help.”
The first step in accepting help is hon-
estly acknowledging you need a strong
support system. Shepley suggests families
sit down and inventory types of situations
in which they feel overwhelmed.

Taking the time to come up with a list of
concrete tasks ahead of time allows parents
to accept help offers when they arise, and it
can lessen a family’s reliance on the go-to
response of “we’re fine.”
42 Washington FAMILY JANUARY 2020
Determine parameters
Shepley advises saving “the big asks” for
regular helpers or family members, rec-
ognizing that not everybody who offers to
help is willing (or able) to take on a regular
commitment or get specialized training.

But that doesn’t mean the offer can’t
be accepted.

Shepley recommends asking follow-up
questions to find out “the comfort level
of the person. Some people may be totally
fine and say, ‘Just show me what to do,’ or
they have a medical background.” These
helpers can be placed in the role of child-
care — a position that parents of children
with disabilities often find difficult to fill.

Kayla S. has a 3-year-old daughter with
Down syndrome. “If someone asks how
they can help us or offers us help, I usu-
ally say the biggest thing is helping us find
sitters to hang out with [our daughter] so
we can get some date nights,” she says. “A
lot of times it feels like any alone time we
do get is spent catching each other up on
information from daycare or preschool or
private therapy. Having someone offer to
let her spend the night so we can get dinner
and talk about something other than Down
syndrome is the biggest help on earth.”
Shepley suggests helpers who have a
trusted relationship with a child take on
duties that can overwhelm a parent’s day.

“Would a relative be willing to come and,
maybe for one time or regularly, do physi-
cal therapy exercises with a child?” Shepley
asks. “Maybe they could take the afternoon
shift three times a week.”
People who aren’t comfortable getting
hands-on can nonetheless provide an extra
set of hands to help pick up siblings or run
errands like getting groceries and prescrip-
tions. Or maybe a friend can come along
to the movies with the family, so if a child
needs to run around in the hallway, there
would still be an adult with the other kids.

Parents can get creative and think in terms
of their ultimate goals, Shepley says. Maybe,
she suggests, parents don’t necessarily need
babysitting during a stressful time of day.

GETTY IMAGES/E+/IVANJEKIC
C aring for Jen and Clark Hudak’s
son Joe is not a casual undertaking.

Their 9 year old suffers from multi-
ple diagnoses, and to explain the intricacies
of his schedule to a potential babysitter,
“You could write a novel,” says Jen.

“There is such a precision in how to han-
dle Joe that unless you live it and see it, you
don’t fully understand what you have to do,”
she adds.

That’s why the Hudaks are often reluctant
to accept help when it’s offered.

“Sometimes, it’s just easier for us to do
it ourselves even though we really want the
break and really want the rest,” says Jen. “I
always like to ask for help, but then in the
end, it’s so much easier to do it myself.”
Friend who are fellow parents may say,
“I’ve done this before,” but Jen feels com-
pelled to reply, “You did it before, but you
didn’t do it with Joe before.”
Patricia Shepley, director of social work at
Kennedy Krieger Institute, says families of
kids with disabilities and special needs feel
the need for a break “acutely,” but there are
barriers — both psychological and medical
— that stand in the way.