An Advocate For A Little-Known Disorder

By Michelle Howe
Star-Ledger Staff

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 said.

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 serious.

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 said.

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 New Jersey.

“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, Geng noted.

“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 said.

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.”