Parents Find the Joys Are Special,...

Sandra Hembd of Cypress and Becky Raabe of Orange have learned a lot about the myriad “syndromes” that can affect children.

On a recent Wednesday afternoon, for instance, Hembd’s 16-year-old son, Mike, hovered over his twin brother, Mark, punching buttons on a calculator and offering Mark help on his math homework. Sandra Hembd gave a resigned sigh. Some “mothering” by one sibling is a common aspect of “twin syndrome” and should be expected, she said.

On Thursday afternoon, Raabe’s 25-month-old daughter, Carrie, danced some nutty toddler steps in the family’s living room and shrieked with unbridled exuberance. Becky Raabe took the high-decibel enthusiasm in stride. After all, she explained, noise is an unavoidable part of the syndrome known as “the terrible twos.”

And Friday night, the Hembds and the Raabes got together with a couple dozen other families at Endeavor High School in Fullerton for an ice-cream social and a discussion of another all-too-common syndrome that Mark and Mike and Carrie and many of the other children in the crowded classroom have in common--Down’s syndrome.

A few of the newer parents gathered for this monthly meeting of the Orange County support group PROUD (Parents Regional Outreach for Understanding Down’s) were fighting back tears. But most had already come to realize a truth to which Raabe and Hembd testified: Raising any child presents both problems and incomparable rewards, and kids with Down’s syndrome, despite the mental and physical handicaps of the disability, are much more similar to “normal” children than they are different.

According to the March of Dimes, Down’s syndrome is the most common genetic birth defect. Birth records tend to be haphazard on such matters, but depending on the authority cited, the defect occurs in about one out of every 600 to 1,100 births in the United States.

As soon as hospitals, friends or health-care agencies refer new parents to PROUD, the nonprofit organization sends the family a red folder bulging with books and pamphlets. In normal babies, the literature explains, the mother’s egg contributes 23 chromosomes and the father’s sperm also provides 23 chromosomes, the cellular components that carry a new human’s heredity. In 95% of Down’s syndrome cases, however, the embryo receives an extra 21st chromosome from either the mother or the father, or possibly during the first cell division following fertilization. (The remaining cases occur because of other genetic “accidents” in the 21st pair of chromosomes.)

Researchers have yet to discover why this abnormality at the 21st-chromosome pair occurs. They do know that a mother’s chances of having a child with Down’s syndrome increase abruptly at age 35, moving from less than 1% around age 30 to about 3% by age 45, according to the information supplied by PROUD. Yet, 80% of babies with Down’s syndrome are born to mothers under 35.

The PROUD package also includes expert discussion and comparison graphics that confirm a new parent’s worst fears--the child will be below average in physical and intellectual development throughout his or her life. But fact sheets and flow charts don’t show the whole picture, families at the meeting said.

In fact, a father repeated to the PROUD gathering a comment his 21-year-old son made about his 2 1/2-year-old sister, Sydney, who has Down’s. “I can’t think of anything more perfect than Sydney,” the young man had said. “If I have a child, I hope he has Down’s syndrome.”

“I know that sounds strange,” the man at the meeting continued, “but I think some of you understand.”

May Seem Peculiar

For the parents and grandparents and siblings burping and nursing newborn babies, still reeling from the discovery that a child with Down’s was now a part of the family, that comment may have seemed peculiar, if not perverse. But other families said they understood.

“Carrie is our 10th grandchild, but from the moment we saw her in the hospital she’s been very special to us,” said Lowell Knutson, Becky Raabe’s father, as his granddaughter offered him a drink of punch from a plastic cup. “Our first reaction was, ‘How is our Becky going to do this?’ That’s your first concern, for your own children. But after a while it’s like there’s really nothing different with Carrie. She’s a part of the family.”

Similarly, Becky Raabe’s concern was for her child. “I knew I could be a good mother, but I wondered if I could be the mom she needed me to be,” she said.

A week after Carrie’s birth, Becky Raabe contacted PROUD. In several long telephone conversations, the president of the group convinced her that Carrie’s potential would largely be defined by her family’s expectations, Raabe explained from her living room the day before the meeting. “A whole new world opened up,” she said.

Raabe did some research and went to work. When Carrie was 5 weeks old, Raabe started her in an infant-stimulation program. At home, to encourage the development of her daughter’s tactile senses, Raabe would fill an infant bathtub with cornflakes or feathers and let the infant thrash around. She had Carrie lick lemons and other strong flavors to trigger her taste sensations and had the baby sniff aromas such as almond extract and peppermint to increase her sense of smell.

Daily Exercise Regimen

Children with Down’s syndrome usually have trouble using their tongues, so Raabe and her family would put peanut butter on the side of Carrie’s mouth, compelling the baby to give her tongue a workout. With the help of her husband, Ed, and the children, she put Carrie through a daily exercise regimen on an oversize ball to develop her motor skills, and because her verbal skills would develop more slowly than most children’s, the Raabes taught Carrie the American sign language.

A year after Carrie was born, PROUD’s board of directors elected Raabe president, and Raabe now spends about 25 hours a week lending support to new families and educating the public about the disability. At the same time, she continues her daily routine with Carrie.

When Carrie was 7 months old, Raabe enrolled her in a program at the Irvine Children’s Educational Center. Three days a week, under the supervision of a special-education teacher, an occupational therapist, a speech therapist and a physical therapist, Carrie and about 12 other children romp around on trikes and rocking horses to further develop their balance and coordination; they paint and put together shapes to develop their fine motor skills, and they sing songs and converse to develop their cognitive and social skills. Twice a week Raabe and other mothers and fathers and siblings participate in the program.

One thing new parents of a child with Down’s syndrome need to overcome is the fear that the new baby will destroy the family, Raabe said. “As soon as we brought Carrie home from the hospital, we let the children participate in caring for her. We let them know slowly what was going on, that Carrie has special needs.”

As Raabe talked, Carrie signed that she wanted a cookie, and 6-year-old Jeff dutifully doled out another Oreo. Jeff, Raabe said, loves to roughhouse with his little sister, and Carrie has no qualms about following her big brother down the Slip and Slide or into the wading pool.

“He’s the wild one,” Jeff’s sister, Laura, 11, interjected. “I read to Carrie, or we play dollies. She gets into my Cabbage Patch dolls sometimes. I let her be the mommy.”

‘Call It Ups Syndrome’

“Laura said something I thought was interesting,” Raabe added. “She said, ‘They should call it Ups syndrome, because Carrie’s always so happy and so much fun.”

Laura is so proud of her sister that last year she took the baby to her fifth-grade class for show and tell.

“It was fantastic,” Raabe said. “For 45 minutes the kids asked questions. They were very curious and very sensitive.”

“Some of my friends already knew her,” Laura said. “Carrie really likes people, and she was being funny, making faces and signing. Everyone laughed.”

“For months afterwards, Laura’s friends would come to see us and ask, ‘How’s Carrie?’ ” Raabe said. “It made me feel good that we were able to do that. To educate them.”

For the most part, public understanding of Down’s syndrome has improved dramatically since the time just a few years ago when the disability was widely known as Mongolism, in reference to the almond-shaped eyes, flattened nasal bridge and other facial characteristics thought to resemble oriental features, Raabe said.

For instance, when Sandra Hembd gave birth to her twins 16 years ago, even the professionals they encountered had little understanding of the boys’ real potential.

“The doctors said, ‘You can’t possibly handle this,’ ” Hembd recalled. “They said that if we were going to save our marriage and our other son’s life we’d have to place them.

“Our minds were mush. We were in a stupor. But we said let’s just take this a day at a time. Once we did that, things smoothed out. The more research we did, the more comfortable we felt (about keeping the boys in the home).”

Babies with Down’s syndrome often have cardiac problems, and during his first year Mark Hembd was in and out of the hospital for treatment of a tiny hole in his heart, Sandra Hembd said. The hole closed as the boy grew, however, and Hembd was able to focus her attention on other aspects of the boys’ development.

In 1972, Mark and Mike became poster boys for the National Assn. for Retarded Citizens, and their publicity tours took them to then-Gov. Ronald Reagan’s Sacramento office (the sketches Reagan drew for the boys now hang on the walls of the family home) and Nixon’s White House, where Mark smeared chocolate brownies on a white satin settee, Hembd said.

For the past year or so, Hembd has been working 20 to 30 hours a week as publicity chair for the 13th annual convention of the Chicago-based National Down’s Syndrome Congress, to be held Nov. 22-24 at the Disneyland Hotel in Anaheim. (For more information, contact the congress at (800) 466-3835) or (714) 974-6419.)

“There’s a whole range of potential that’s gone untapped in kids with Down’s because no one has expected anything of them.,” Hembd said. “But if you don’t expect anything you’ll never find out what someone’s capable of achieving. We’ve raised the twins exactly the same way we’ve raised Scott (the Hembd’s 19-year-old son, a sophomore majoring in electronics engineering at UC Irvine). We expect Scott to do whatever he does to the best of his ability, and we expect the twins to do their best.”

On a recent afternoon, Mike and Mark were doing their best to look like Magic Johnson and Kareem Abdul-Jabbar. Sophomores at Western High School in Anaheim, the boys take some courses with their “mainstream” classmates (Mike is doing well in algebra) and some special-education classes. After school they are managers for the sophomore basketball team.

At games, Mike and Mark get dressed up in shirts and ties and work the sidelines, chasing balls and carrying water for the team members. Five days a week, though, they dress in uniform and hustle along with the team as it runs through its drills.

Mark and Mike didn’t come in first as they darted back and forth with their flashy basketball shoes squeaking in the wind-sprint exercise, but they didn’t come in last, either. In a passing drill they faked and pivoted and pumped the ball through a moving maze of bodies with considerable grace. And when Mark swished two free throws in a row, his teammates congratulated him with sweat-splattering low fives. Besides being fun, the workouts have helped their performance on the Lakers--the Special Olympics basketball team on which they compete, the boys agreed.

After practice, Mark and Mike changed clothes and wolfed down a meal around the family dinner table. Most evenings, the boys do their homework, then watch television or put Springsteen’s “Born in the U.S.A.” or Tina Turner’s “Private Dancer” album on the stereo in their bedroom and practice break-dancing routines. This evening, however, they reclined in the living room, casually talking with their parents.

“Do you think you’ll want to get married some day and move out on your own?” Sandra Hembd asked.

“I haven’t had a date yet, Mom,” Mike replied dryly, wiggling his eyebrows with a comic finesse that Groucho Marx would have envied.

“I want a date with Nikki,” Mark said, referring to a handicapped girl he sees occasionally at special dances put on by the Anaheim Parks and Recreation Department.

“You don’t even have her phone number,” his mother chided.

“Trust me,” Mark replied with a cryptic grin.

It is not terribly unusual for adults with Down’s syndrome to marry, Hembd said, adding that with all the development opportunities now available there’s no reason why most adults with the disability can’t eventually live and work with considerable independence. For example, Hembd said, she expects Mike and Mark to someday have their own apartment and some kind of gainful employment.

“In hindsight, I really resent the bum advice we got considering the twins’ potential,” Jim Hembd, an aerospace engineer, said as Mark gave him an energetic back rub. “What really struck me about the last PROUD meeting was how much some of the new parents already knew and how well they were dealing with the situation.”

Steve and Susan Pappas of Mission Viejo were among the parents at the PROUD meeting. As Mark and Mike Hembd dished out ice cream and acted as charming hosts, the Pappases talked about their sudden immersion into the world of Down’s syndrome.

“It’s a real shock. It’s devastating,” said Steve Pappas, gently cradling his 3 1/2-week-old daughter, Haley, while the couple’s other two children rampaged around the room with Carrie and Jeff Raabe. “With the other kids, the birth was a totally joyous occasion. And it still is joyous, but now, when people ask about it, there’s always a ‘but.’ ”

Said Susan Pappas: “The hardest thing is to let other people know that it’s OK for us.

“I majored in developmental psychology in college, so I was probably more prepared for this than the average parent,” she said. “One of the women here tonight told me that just recently, when her son was born, her pediatrician said, ‘Write him off. He’s a moron.’ But I knew the potential for Haley. I knew that it would take a lot of day-to-day commitment on my part, but I never thought of her as a tragedy.”

Among the things Pappas noticed in her research was how the public’s attitude toward Down’s syndrome has changed over the years. “It went from dehumanization to deification,” she said. “First they said, ‘Oh, they’re just animals.’ Then they said, ‘They’re angels sent from heaven.’ But as well-meaning as people are when they say that, they’re wrong,” she snapped. “Haley’s not an angel, she’s a person. I want people to understand that.”

Earlier, Becky Raabe expressed a similar belief, pointing out that somewhere down the road efforts to educate the public may prove as important as efforts to educate children with Down’s syndrome themselves.

“I can spend the next 10 or 15 or 20 years teaching Carrie all sorts of things to make her independent,” Raabe said. “But if society won’t look at her as anything but a syndrome, it won’t do any good. She does have a disability, but she’s a person first. She’s Carrie Lynn Raabe.”