Waiting for her voice
Lolita Harper
Her big brown eyes tell her story. They gleam when she is laughing.
They glare when she is angry. They tear up when she is sad.
Sahar Barkzay’s eyes articulate her emotions because her autism
stifles other forms of communication.
Thursday, the 6-year-old’s eyes were saying she was in pain. Her
gaze would dart from floor to ceiling, fluttering her long lashes
with each movement, as she grabbed her left ear with both hands.
“I don’t think she is feeling very well,” mother Marina Barkzay
said. “I think she has an earache. Of course she is not able to tell
me this but I see her touching her ear.”
Ear aches are common for Sahar and many autistic children, as are
sever allergies, gastrointestinal problems and seizures. Marina
Barkzay said she would take her daughter to the doctor that evening
-- a common outing for the mother-daughter pair because of the autism
and Sahar’s compromised immune system.
The Barkzay family emigrated to the United States from
Afghanistan. Marina came from Kabul and her husband from Kandahar.
Shortly after Marina joined her husband in America, Sahar was born.
Four years later, they learned their daughter was autistic.
For the first 11 months of her life, Sahar developed like any
other child. Her first word was spoken then but the rest never
followed. Barkzay said she started to recognize a lack of development
and talked to a pediatrician.
“I was sure it was serious,” she said. “I just knew something
wasn’t right.”
Although the mother had her instincts, pediatricians were
reluctant to diagnose Sahar. They said she was a happy, energetic,
healthy little girl and Barkzay should not worry.
Finding something wrong
At the prompting of friends and child behavioral professionals,
Barkzay took Sahar to a specialist when she was 4. It was then she
was diagnosed as autistic.
“It was very hard at the beginning,” Barkzay said. “I had waited
so long and I could have been helping her before.”
Jack Anthony, an attorney who represents the family pro bono and
works with them to get the proper services needed from the public
school system, said early intervention is always the most effective.
Studies show if children begin to receive treatment before age 3,
they are more likely to “recover,” Anthony said.
Anthony placed no blame on the parents for a lack of early
intervention. He said medical professionals are generally reluctant
to make a diagnosis because they either haven’t spent enough time
with the child to recognize the symptoms or they are not equipped to
take on the responsibility that comes with making such a
determination.
“As long as parents keep hearing positive things from medical
professionals, they believe them because they want to,” Anthony said.
“A parent doesn’t want to believe anything is wrong with their
child.”
Long days, little rest
Today, to provide Sahar with what she needs, Marina Barkzay works
tirelessly, to accommodate her daughter, while her husband works long
hours to keep the family above water.
Barkzay’s day begins at 6 a.m. She wakes Sahar to bathe her, dress
her and feed her before the school bus arrives at 7.
“Some mornings it is just so hard because she just doesn’t want to
get dressed or she doesn’t want to eat” she said. “She will just
stand there. She likes to dress up but she likes to do it on her own
time -- not on my schedule.”
Barkzay sends her daughter off to school and then gets herself
ready for work. She often cooks in the morning so lunch will be ready
when Sahar returns home from school. She then leaves for her job with
the Orange County Department of Education, where she works half days.
“I have to work half days because I have not found anyone who can
take care of her,” Barkzay said. “It is hard enough for me to take
care of her.”
Barkzay comes home for lunch and lies down for a moment’s rest
because she is usually “really, really tired,” she said.
At 12:25 p.m. the school bus returns Sahar and the duo eat lunch
together.
“On a really good day we go to the park,” Barkzay said. “Outside
she is OK, but it is not always possible.”
Other days the two go shopping, run errands, visit friends or pay
bills -- all of which are extremely difficult tasks with an autistic
child in toe, Barkzay said.
“She must go everywhere with me, if I leave her with someone, she
does not do well,” she said.
After the outing the two return for a daily dose of music, writing
and other educational activities until about 4 p.m.
“And then I get back to cooking,” Barkzay said.
A love of music
Thursday Sahar lay lifeless on the leather couch but did not fully
abandon her musical time and crooned soft, melodic moans as she
cradled her ear.
The small family lives in a modest one-bedroom apartment off
Fairview Road in Costa Mesa. The living room is surprisingly clean
considering it doubles as the playroom for a young child. The floor
was decorated with ornate rugs and the walls were adorned with family
pictures. On a side table sat a mold of Sahar’s tiny hand and on the
bottom shelf of the facing bookcase were the child’s musical
playthings.
“She loves music,” Marina said, grabbing for the medium-sized
bongo drum, noise makers and a keyboard. “This is what we usually do
in the afternoon when she is feeling well. I can tell she is in pain
because she never passes up the chance to make music.”
She is really so smart, Barkzay says, as if she needed to convince
anyone in the room.
“Most things I know she understands and she is really, really
good,” she said.
One afternoon, Sahar dressed up three times within an hour and put
on her mother’s shoes and beautiful dresses. Barkzay laughed because
she saw how easy it was for Sahar to dress herself when she wanted to
and couldn’t help contrast it with the usual, conflict-laden, morning
routine.
Other times the 6-year-old will prop open the fridge, pull out
some eggs, get out a pan and make herself a snack, Barkzay said.
Sahar loves eggs
“She likes to be independent,” the mother said of her daughter.
An advocate on her side
But as much as Sahar can accomplish, she is so far behind and it
is a daily struggle to improve upon her communication and behavior
skills.
That is where Anthony comes in.
Anthony will represent Sahar during a formal meeting with the
Newport-Mesa Unified School District, in which the Barkzay family
will request additional services. Anthony said Sahar is displaying
disturbing behaviors while at school that disrupt learning for the
entire classroom. Her communication skills are lacking and she will
grab crayons, toys or food from the hands of her peers.
Anthony, and Jessica Pastil, the clinical director of Autism
Spectrum Consultants, believe Sahar would benefit greatly from an
individual aid in the classroom, as well as continued speech and
occupational therapy.
“We are going to appear before the district and ask them to
voluntarily provide the services we strongly believe Sahar needs,”
Anthony said.
Representatives from the school district could not be reached
Friday. Anthony stressed the two are not at odds with each other and
said the local district is one of the most compliant in the county.
Services provided by the school will not be enough to push Sahar
toward recovery, Pastil says. Many parents of autistic children are
well aware that it is a very costly process to provide the hours of
special programs, both in the home and out, and to find the right
doctors, clinicians and therapists. This is all in addition to the
sheer time it takes to care for and love and share lasting memories
with an autistic child.
Support from the community
For a family with a tight budget, those frills are few and far
between. If not for the donated services of Anthony and Pastil, the
Barkzays would simply go without.
“It is definitely hard,” Barkzay said. “It is really, really
hard.”
In honor of National Autism Awareness Month, which both the cities
of Costa Mesa and Newport Beach recognized with proclamations, area
parents of autistic children have formed a fund for Sahar. Councilman
Gary Monahan, who is also the father of an autistic son, has
volunteered his business as campaign headquarters. (Not an unfamiliar
title for the popular Irish pub.)
“People have appreciated that the Barkzays don’t have the funds,”
said Anthony, who first was introduced to the Afghani family through
his wife, Christina. “I know appreciate the need of the family.”
Sahar needs medicine, special diet foods and speech and behavioral
therapy, Christina Anthony said. The family is poor but very proud
and college educated, she said.
“With these she has a chance of a productive life,” she said.
“Without them she is destined for a lifetime of care, given in-home
or in an institution.”
Barkzay realizes the long-term benefits of such specialized
services but as she sits and strokes her daughter’s thick, dark hair
on a gloomy Thursday afternoon, her plea is much simpler.
“I just want her to be able to talk to me,” Barkzay said.
* LOLITA HARPER writes columns Mondays, Wednesdays and Fridays and
covers culture and the arts. She may be reached at (949) 574-4275 or
by e-mail at lolita.harper@latimes.com.
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