Whittier parents use early intervention

By Rose Hooper

But when the doctor looked at their baby, he suggested tests for Down Syndrome.

After the test and during those anxious days before the results, the young Whittier couple discussed the "what ifs" their first did indeed have Down Syndrome.

"We won't feel any different," they decided. "And we certainly won't love her any less."

Nine days later when they learned Aubrey did have the chromosome abnormality, they were stunned. "Even after all the talk and possibilities, it hit us hard. I don't know why, but it did," Melissa said. "That first day learning about it was the hardest. But after the shock, we got over it and said, 'OK, what do we do now?'"

The day they found out, the couple went to their pastor's home. "He helped us see that Aubrey came to us exactly perfect ­ just the way God intended. It's not up to her to live up to our expectations; it's up to us to live up to hers," Melissa said.

"I know Aubrey may not grow up to be a rocket scientist, and that's fine. But she will grow up to be a functioning happy adult. Melissa and I will see to that," he said.

And see to it, they are, according to Suzanne Fullar, pediatric nurse practitioner.

"Aubrey has wonderful parents who are using the early intervention services for Down Syndrome children. They've been active in starting a support group for parents of children with developmental problems and they are helping with the Children with Down Syndrome conference that will be held Nov. 1-2 at MAHEC in Asheville," Fullar said.

Having a special needs child has taught Melissa the importance of "being proactive every day in meeting Aubrey's special needs. My goal is to have all avenues in place to help her the best we can. I don' want her to suffer because of our lack."

To another parent of a child with Down Syndrome, Melissa would say, "It's incredibly overwhelming at first, but you don't have to do it alone. There's lots of support out there."

"That was the thinking of the day," said Melissa. "But luckily my aunt would have nothing to do with that. She kept her at home and treated her normally. Now we understand more about Down Syndrome and we have so many resources. We're just now in the first generation of that early intervention. There's no telling how much Aubrey and those her age will be able to achieve."

One of the learning resources used with children with Down Syndrome is sign language. The Greenes started Aubrey out around 6 months of age.

"She understands what the signs are for," explained Melissa. "Although she's very vocal, Aubrey can't always speak the word, but she knows the association. She just can't communicate verbally and that's where sign language comes in."

Robert even has a theory about the "terrible 2s." He thinks part of the temper tantrums of 2-year-olds are due to their frustration of not being able to communicate verbally.

"They know what they want to say, but they can't always speak the words. I really think sign language could eliminate some of that terrible twos behavior," Robert said.

Compared with children without Down Syndrome, Aubrey lags behind in language development by about six months.

Several days a week Aubrey has physical therapy to help with her weakened muscles and occupational therapy to help with her fine motor skills.

She also takes Kindermusik and delights in the musical activities with other children. Aubrey responds with enthusiasm to instructor Lori Richards' commands like "clap your hands," "stomp your feet" and "turn in a circle."

"She's a happy child, doesn't know a stranger," said her mother. "We'll be in a cart at Wal-Mart and she'll wave at other children and say, 'Hey, there!' She's more like other children than she's not."

What is Down Syndrome?

Down Syndrome is a chromosomal abnormality that occurs in all cultures, ethnic groups, socioeconomic levels and geographic regions. It appears in both boys and girls with equal frequency.

Individuals with Down Syndrome are identified at birth by certain physical characteristics, including reduced muscle tone, skin folds covering the inner corners of the eyes, a flat nasal bridge, a shortened neck, and smaller hands with a single crease in the palm. All persons with Down Syndrome will have some degree of mental retardation.

Nothing that parents do before or during pregnancy causes Down Syndrome, nor is it preventable. The physical characteristics and developmental delay observed in individuals with Down Syndrome are due to the presence of an extra chromosome. Normally there are 46 chromosomes in each cell, arranged in 23 pairs. With Down Syndrome the 21st pair has a third chromosome attached. This additional chromosome causes a genetic imbalance, altering the normal course of development.

Want to learn more about Down Syndrome?

A conference on Children With Down Syndrome will be held Nov. 1-2 at the Mountain Area Health Education Center in Asheville. The conference is sponsored by Western Carolina University's Developmental Evaluation Center, with funding from WNC March of Dimes and the Graham Children's Health Center. Registration is $38 per day, or $60 for both days. A reduced fee is available for parents and family members of children with Down Syndrome. Registration deadline is Oct. 28. To register, call 227-7397. For more information, visit: http://cess.wcu.edu/downsyndrome/.

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