Cox News Service
WEST PALM BEACH, Fla. -- Few things are more heart-wrenching than a
child who can't communicate with his or her parents. No matter what
the reason may be, the mom and dad may feel helpless, confused,
even rejected.
That's especially so when the diagnosis comes after the child
has appeared to develop normally. Autism - that's what Denise
Negron and her husband, Felix Hernandez, were told was the reason
for their son, Alejandro's, radical change in behavior when he was
3 years old.
But his strange behavior had started at least the year earlier.
"He was developing normally until 24 months old," says Denise,
who moved with her family from Puerto Rico in 2000 and now lives in
Wellington. "He was eating with the spoon, saying a few words,
started potty training and suddenly stopped. He ignored you when
you called him; he stopped socializing; no eye contact; started
spinning objects repetitively, turned light on and off," she
recalls.
It was devastating. Told her child had developmental delays,
Denise made sure Alejandro received speech, occupational and
physical therapy. But that wasn't the whole answer. Further
evaluations turned up the autistic diagnosis.
Autism is a lifelong neurological disorder that impairs a
person's ability to communicate and relate to others. There is no
known cause or cure. And controversy about the condition is
ongoing.
"We had no clue what autism was," Denise says, remembering
their shock and confusion of five years ago. "We started doing
research, getting support group and information about this."
What has torn families apart has severely tested Denise and
Felix, but they have endured.
"At that time, nothing was covered by any insurance, so we did
our best to keep him on track because the early intervention is
crucial for these children for their development and to make them
more independent if possible.
"All the therapies were out of pocket, and what we could pay
was around six different therapy sessions weekly. It cost around
$14,000 or more per year." And that was considered basic, Denise
says.
"A very realistic number is around $50,000 or more annually. We
were lucky to pay for some of these therapies (by) refinancing our
home and getting into credit-card debt, but we did whatever we
could, no matter what, because it was for our son. We are still
currently paying for some of his therapies."
Denise is not convinced that childhood vaccines are the culprits
that cause this disorder, despite the publicity and push
surrounding it. But she doesn't have any real clue as to why her
son was struck this way. Her daughter is not autistic.
"I believe that (vaccines) may have something to do with
autism, but there has to be other factors as well," Denise said.
"As we share information with other parents, we find that a lot
of our children are similar in the fact that they are very allergic
to a lot of things and that the immune system seems to be weak."
Autism education has become a passion for her. She is active at
her son's school, Discovery Key Elementary in Lake Worth, and is
co-chair of the 2008 Autism Speaks events in Palm Beach County. She
is particularly interested in educating the Latino community and
helping families stay united.
"Statistics show that 85 percent of families with a disabled
child end up in divorce," she says.
As for Alejandro, he is progressing. "He is talking a lot more.
He loves math, reading and writing. He is a big NASCAR fan, an
especially big Jeff Gordon fan and a baseball fan.
"Just a few months ago," Denise said, "I received the best
gift ever. My husband was putting Alejandro to sleep. I always hug
and kiss him and tell him how much I love him. Suddenly, he turned
around and looked at me and told me, 'I love you too, Mom' without
prompting.
"That was the best thing ever. I cried a lot because he was
finally connected with me. Daddy was crying, too."
What is autism? Autism is a lifelong neurological disorder that
impairs a person's ability to relate to others.
-- 1 in 150 children are diagnosed with autism.
-- 1 in 94 are boys.
-- A new case is diagnosed almost every 20 minutes.
-- There is no medically detected cause or cure for autism.
Recommended reading:
-- Act Early Against Autism (Perigee Trade Paperback Original,
$14.95) Author Jayne Lytel details her battle to get her autistic
son diagnosed and treated; includes tips for parents on dealing
with diagnoses; some promising new treatments.
-- Does Your Baby Have Autism? (Square One, April 2008, $17.95),
by Osnat and Philip Teitelbaum. Osnat developed the 'movement
language' that helps diagnose autism in infants. Philip Teitelbaum
is a leading expert in physiological psychology. Both teach at the
University of Florida.
Carolyn Susman write for The Palm Beach Post. E-mail: csusman AT
pbpost.com.