Jason and Vanessa Herz videotaped the moments before they walked out the door to head to the hospital for the birth of their baby.

On camera, Vanessa pauses in the hallway, grinning and patting her swollen belly.

"We need to go now," she says, and the camera clicks off.

They had expectations of what their baby would be like, they said recently, as the video played in their Rapid City home. They had envisioned the first teeth and kindergarten, softball practice and graduations.

"Here," Vanessa says, pointing to the screen, now focused on a naked baby boy, his first moments in the world, skin red and wet, nurses' hands quickly working around him.

"That's where it all changed."

The infant's jerky kicks and pinched scream grew quiet and slow, as if suddenly moving underwater.

Jason and Vanessa's handheld camera was turned off when a doctor sat down with them and explained that their son had been diagnosed with Trisomy 21, or Down syndrome. People with Down syndrome tend to have a lower cognitive ability, often ranging from mild to moderate learning disabilities.

"I immediately shut down," Jason said.

It's difficult to explain, he said, but learning that you have a child with a disability begins with mourning the loss of what you thought was going to be.

It doesn't take long until you see what a blessing you have in the child you've been given, he added.

They named their baby Jackson, and quickly realized that their life could look very much like those of the families around them. Services like the Rapid City School District's Birth to 3 program have helped Jackson develop, Vanessa said.

Jason said they get frustrated when people make comments like, "God gives special babies to special people."

"That's making it like some kind of tragedy and it's not," he said. "We're trying as hard as we can to be normal."

All of the families interviewed for this story echoed the same sentiment. While things still need to improve, attitudes, services and community support for people with Down syndrome, such as events like next weekend's Buddy Walk, have changed drastically for South Dakotans in the last couple of decades.

Younger parents commended current programs like Birth to 3, and their stories contrast with the experiences of parents who had children with Down's many years ago, who tell stories of delivering their baby and hearing the doctor suggest sending the newborn to an institution.

Parents who are raising a child with Down syndrome today, dealing with the transitions from baby to toddler, child to preteen, teenager to adult, worry about the same things every parent fears, Jason Herz said.

"You're afraid of the unknown."

It's been 16 months since the Herzes went to the hospital to deliver Jackson, and today he is at their feet, clapping his hands and wiggling as a stuffed Winnie-the-Pooh sings in front of him. He has the features most commonly seen in Down syndrome - almond-shaped eyes, a small protruding tongue, a round, flat face that gets rounder when he smiles.

The Herzes are faced with the challenges unique to Down's, a slower progression of learning, from talking to walking, socializing to reading. They wonder if Jackson will ever go on a date or go to college. But right now, Jason and Vanessa are faced with the most ordinary part of raising a child - letting go.

Jackson started day care this month. He sits on the floor and play blocks with other children, lays down for a nap after being rocked by someone new, and cries for a few minutes when his parents drop him off, kiss him goodbye and slip out the door.

Just a boy

Parents of older children with Down syndrome say new parents should focus on the possibilities for the future of the child.

Rhonda Grant, mother of Rachel, 14, with Down syndrome, said, "Do not ever limit your child. You can't say 'you can't.' When you do that, you're pigeon-holing them."

For Rachel, it has taken her twice as long to reach some milestones. When other kids learned to walk at the age of 1, she learned at 2. Other were potty trained by 2 or 3; she was older than 5. As a teenager, reading is still a challenge.

While Rachel's interests have moved to makeup and boys and shopping, she's still hooked on Hannah Montana, Barbies and Bratz dolls.

"In some places, she's still 7 or 8 years old," Rhonda said.

One of the most difficult aspects about Down syndrome, Jason and Vanessa said, is trying to get people to accept the disability, but not stereotype it. Even with good intentions, some people mistakenly think all kids with Down's are cuddly and nice, Jason said.

"Not all Down syndrome kids are happy and smiley," Jason said. "(Jackson) has a personality."

To them, he needs the same thing as any other child - love and acceptance.

"I wish they could come live with us for a week and experience our life with Jackson, and see it's not a death sentence," Jason said. "He's just a boy."

Rachel's younger brother, Johnny, 11, can't help but feel the same way about his sister. In between sports practices, he and Rachel make after-school snacks together and play catch. There have been difficult moments, like when he's seen her get teased.

As he talks about it at their house one afternoon, he tosses a football back and forth between his hands, and then bows his head and covers his face to cry.

Rachel watches him and frowns.

"It's hard to hear that stuff," Rhonda says, putting a hand on Johnny's shoulder. "We hope people open their eyes and see she's just another teenager."

And most of the time they do. Rachel has been welcomed into the cast of numerous plays put on by the Black Hills Community Theatre and Rhonda says she is considering sending her to Central High School to be a part of its well-known theater department.

The transition of middle school to high school reminds Rhonda of Rachel's first day of kindergarten.

"She was great; I was a basket case," she said.

But it's important for children with Down syndrome to spend time with other children, said Kathy Hartl, who runs Kathy's Playhouse in Rapid City. She babysits two children with Down syndrome, Grayce Holzer, 2, and Jackson.

The older children carry, play and interact with the two of them in the same way they do the other children, which helps Grayce's and Jackson's development. Grayce is walking, which is good for Jackson, who is not yet crawling.

"Other kids just motivate him," Hartl said. "They need that socialization and the normalcy of daycare."

It's also good for the other kids, she said.

"They see that disabled means they don't need to be afraid," she said.

Vanessa said she has seen improvements in Jackson since he started day care. Right now, they are celebrating his small victories, like when uses his arms to push his chest up off the ground, pinches his thumb and index finger together to grab things, and claps.

They are like any other parents in that they want to see him progress, Jason said, but it's not a race.

"With Down's, the pressure's off," he said.

Rhonda said she feels the same way and, sees no limits to what Rachel can do.

"She's been an absolute blessing and an angel," she said. "She does more every day."

Becoming an adult

Josh Steinhauer hates clowns and paces in front of the Weather Channel when it storms. He's brave, too - he snowboards and sings Johnny Cash during karaoke, and he has an uncanny memory. He also has a girlfriend from summer camp, talks about his high school graduation in two years and he can't wait to move out of his parents' Custer home.

Josh Steinhauer also has Down syndrome.

His parents, Lorie and Roger, raised Josh, who is now 17, with two siblings, nurturing and nudging him to grow and mature alongside his brother and sister.

His photo albums show a toddler in the bathtub, a boy playing basketball, a teenager climbing to the top of Crazy Horse. He has had all the same opportunities and experiences afforded her other two children, Lorie said.

"We never held him back," she said.

Josh attends Custer High School, and with graduation on the horizon, he's already looking for jobs and will begin working with a job coach this month through a program called Project Skills.

Lorie heard about it while she was in Pierre with Partners in Policy Making. Parents and siblings of people with disabilities spend six months in Pierre learning about resources and how to become an advocate, how to improve things even more for families in the future.

She shares her story of how nutritional supplements, or vitamins, have helped Josh's health. She said she hopes other people will take part in the Pierre program because the more people educated about services, the better.

"I really wanted to do that because he's getting at that age of transitioning into the adult world," she said.

Shiela Szymonski is already at that point. Her 20-year-old son Adam was born with Down syndrome, and she said she has often been frustrated with the lack of a centralized system for helping kids with disabilities. Different programs like Birth to 3, the Black Hills Workshop, the Daisy House, and Head Start, all help kids at different ages and operate on different funding sources, and she thinks some kids fall through the cracks.

Dr. Amanda Diehl, a pediatrician at Rapid City's Regional Medical Clinic, agreed.

"I'm frustrated with the lack of underlying care," she said, like that there is no special-needs daycare center in the area.

Szymonski, a nurse practitioner, commended Black Hills Special Services in Meade County, which buses Adam to and from work. It also sponsored summer programs. Rapid City also has summer programs, but they are often full with waiting lists, she said.

Families with children with Down syndrome are simply faced with more stresses, Diehl said.

Szymonski said it's more difficult for people with Downs to adjust to life's changes.

"They're visibly different, so people already form an opinion and that makes it harder on them," she said.

Lorie Steinhauer said they will take time to prepare for the next big transitions, which means taking more baby steps, like overnight camps away from home.

"We want to give him those experiences of being independent, just to let him go out there and stay in a situation where it's him and he's protected. It's harder on me than it is on him," she said. "I can't tell you how many times I picked up the phone to call to check on him and then put it back down. It's just being able to trust that the people out there care and will do the right thing."

From the beginning

Comfort zone. It's a place Jason and Vanessa Herz say they leave more and more often.

Vanessa looks at one of their wedding photos propped up on a coffee table and shakes her head with a smile.

"It feels like that's someone else," she said.

Jason agreed.

"You could divide our lives into two, before Down's and after, and they are completely different in the way you think about life," he said. "It's opened my eyes and made me a better person," he said.

From a day-to-day standpoint, it is more work, Vanessa said, listing off the several therapy sessions Jackson attends during the week. "But I can have a crummy day and he makes all my problems go away when I see his smile."

Not everyone is at that point, he said. The babysitter they had lined up before Jackson was born backed out when she learned he had Down syndrome. The Herzes say they understand, but it still hurts.

They also know that more prenatal testing has increased abortion rates nationally for fetuses with the extra chromosome that causes Down syndrome, something they would never consider.

"The tragedy is not having a kid with Down's; it's that people terminate and they never know," Jason said. "We feel really blessed."

They plan to have more children, probably sooner than later. They know their chances of having another baby with Down syndrome is higher because they have had one child born with it. They say will take whatever God gives them.

Lorie Steinhauer knows what they will go through the next 18 years and she says there is nothing to fear. They'll be using the same tool all parents use.

"I think unconditional love is a pretty good word for it," she said.

Contact Kayla Gahagan at 394-8410 or kayla.gahagan@rapidcityjournal.com.