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 [email protected].