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Advocate For A Little-Known Disorder
By Michelle Howe
At Tanner Geng’s second birthday
party, his parents, Lisa and Glenn, noticed there was something wrong
with their son.
“He wasn’t able to blow out the candles on his birthday cake and he couldn’t
purse his lips to blow. It was a real wake-up call for us,” Lisa Geng
In addition, Tanner had a speech problem. At first, doctors thought he
was “just a late talker,” his mother said. But his difficulties were more
Tanner, now 4, was diagnosed with apraxia, a neurologically based, severe
speech disorder. Apraxic children require daily, intensive therapy.”
“I’ve been told he will be able to talk- maybe not like you and I, but
with continued therapy, he’ll be able to make himself understood,” Geng
Following the diagnosis, Geng sought a support group. But at the time
there were only seven such groups in the world, and none of them was in
“Lauren Zimet, my son’s former therapist at Children’s Specialized Hospital
suggested I start my own, so I did,” said Geng, a Warren Township resident.
Geng and two other mothers ... – founded the Children’s Apraxia Network.
The group meets on the first Monday of every month at 7:00 p.m. (except
for holidays) at Children’s Specialized Hospital, 150 New Providence Road
in Mountainside. The organization is not affiliated with the hospital,
“Parents and professionals who want to help us are coming from throughout
New Jersey, New York, Pennsylvania and Connecticut. In addition to being
able to share information amongst ourselves, we have guest speakers from
the medical community who provide us with the latest information,” Geng
Lori Roth, a speech pathologist with a private practice in Cedar Knolls,
said the cause of apraxia is unknown.
“Children’s verbal apraxia is a motor sequency problem where there is
a lack of connection in the motor section of the brain that inhibits speech.
There is a wide range of severity in those with the disorder,” Roth said.
“With apraxia, a child has difficulty coordinating the oral-motor movements
necessary to produce and combine speech sounds to form syllables, words,
phrases or sentences,” said Michelle Ortega, a therapist who has worked
with Tanner for the past six months.
“Looking back there were signs that he had problems,” Lisa Geng said,
“But compared to our oldest son who had severe respiratory and developmental
problems due to a traumatic birth, Tanner seemed so advanced.”
At 11 months of age, Tanner developed two cases of roseola with very high
fevers, “Before the fevers, he could say “da” for dad. He couldn’t afterwards.
Tanner could still say “ma” but would only say “mmm” for everything else,”
his mother said.
Tanner now attends (an out of district preschool) and receives occupational
therapy at the Handicapped Treatment Center in Somerset.
In addition to the professional therapy, the Gengs work with him at home
as much as they can.
“Tanner is 4 now and his brother is almost 6. It’s important for us to
be able to spend as much time helping them as possible, so we run an Internet
shopping service out of our home,” Geng said.
“The bottom line is, you have to become an advocate for your child, especially
if he or she has a medical problem that needs extra attention.”