A special woman for special kids: Schaible brings passion, wisdom to program for kids with special needsDILWORTH - As they begin their weekly session together, Beth Schaible handles little Rowan Hammer like a rare and precious package, carefully supporting his head while slowly lifting him off the floor.
DILWORTH - As they begin their weekly session together, Beth Schaible handles little Rowan Hammer like a rare and precious package, carefully supporting his head while slowly lifting him off the floor.
Midway through his upward journey, Schaible pauses, cradling the 17-month-old while speaking softly.
“Row, you got any kisses for Beth today? I would love to see your kisses,” she says. “Show me, can you be a strong boy?”
And then it happens – a quick brushing of lips to cheek that easily could have passed by unnoticed.
“Now there’s those kisses. Those are so sweet,” the occupational therapist says.
Unlike her young client, who comes to the Dilworth home of his child care provider, Janet Nordby, every work day, Schaible is the guest, though a regular one.
Diagnosed in September with X-linked lissencephaly, or “smooth brain,” Rowan lacks brain folds and grooves found in typically developing children.
Though his eyesight is fine, Rowan can’t always process what he’s seeing. Cognitively, he’ll likely not exceed a 3-month-old’s comprehension.
To reach his potential, Rowan will require special assistance throughout his life. His parents, Erin Mayer and Steven Hammer, along with his
3-year-old sister, Lily, also will need support – both educational and emotional.
Tools to try
The bulk of his session this day takes place in the “Lilli’s Little Room” box, a wooden cube filled with various hanging toys offering cognitive and physical stimulation.
He’ll also try out a new stander, enabling him to join the vertical world and provide help with circulation, breathing and muscle development.
To Schaible, helping people like Rowan and his family is more than a job. Vocation might be a closer match to how she describes her work with the Kids Infant Development Program (KIDS) of North Dakota.
An early-intervention service, KIDS provides free, home-based, family-focused services for children birth to age 3. Though stationed in Fargo, Schaible’s branch operates from the Anne Carlsen Center in Jamestown.
An Unexpected Journey
Prior to September, Rowan seemed healthy, his mother says. Then, one weekend, everything changed. “He wasn’t making any eye contact, and it was like he was nowhere to be found. He was really lethargic.”
A subsequent MRI revealed the genetic abnormality.
“We were devastated, obviously. We had this vision of our boy walking and bringing dates home and hitting his sister and all of that stuff,” Mayer says. “We had to alter that plan, but one of our hopes has been that this would teach us compassion and Lily to be a good person.”
Since his diagnosis, Rowan has been in and out of the hospital so often that his sister thinks he works there.
He’s also on “a host of medications,” according to Mayer, along with a special diet high in fat and protein, with no carbohydrates, to help reduce inevitable seizures.
But through KIDS, the family has been able to cope and even appreciate Rowan’s contributions to their lives. “We couldn’t be happier with Beth,” Mayer says. “She’s the best in town. She just loves Rowan and is so sweet with him.”
Schaible helps most by building and focusing on the small things. “Like those kisses,” Mayer says. “I would have thought they were coincidences before, but she’s helping us tune in and make sure our son is having a happy life.”
Finding her calling
Schaible, who’s been with the KIDS program since 1982, says she’s always enjoyed helping people with disabilities live more successfully.
Her training started at age 6, when her grandfather was diagnosed with Lou Gehrig’s disease.
“For many years, maybe 10, he was bedridden,” she says. “So we would work on finding ways for him to communicate, back before computers were an option, and help him maintain his feeding and breathing skills.”
He died when Schaible was 13. “I think that’s what interested me initially and what intrigued me about the field of occupational therapy.”
In high school, an aptitude test showed Schaible best-matched for the life of a priest, mortician or occupational therapist. “The first, well obviously that wasn’t going to happen,” she says, laughing.
She ended up volunteering at a hospital, where she worked with people of all ages who needed assistance. “I loved it, and I knew at that very moment what I wanted to do.”
A team approach
Vicky Whitcomb, a speech-language pathologist, has worked alongside Schaible since 1987. Christine Soukup, an early interventionist, joined the KIDS staff 12 years ago.
“A real strength of Beth’s is picking up on the subtle difficulties a child is having that someone with less experience might completely overlook,” Whitcomb says.
Like Schaible, Whitcomb unknowingly began training for her profession in childhood, when her sister was diagnosed with autism.
“Back then, there was nobody to come in and relieve you if you wanted to go someplace … so it was difficult to do things as a family,” she says. “We’ve come such a long, long way.”
In high school, Soukup volunteered to work with a child on the autism spectrum, an experience that helped her years later when Cody, her stepson, was diagnosed with the disorder.
She says she’s benefited greatly watching Schaible, a mentor who’s thorough and dedicated. “She really leaves no stone unturned.”
On their turf
The success of the KIDS program, the women agree, can be partly attributed to the approach of meeting with kids on their own turf, and arranging sessions around their already-in-motion lives.
“You model and give parents suggestions and they can carry that out 24/7,” Whitcomb says. “That’s more effective than someone coming in for half-hour a day and going into a separate room to do therapy away from the rest of the family.”
Though objectives must be met, the program offers flexibility, allowing therapists to move where the wind blows on a given day.
“I just kind of jump in and do,” Soukup says. “We don’t, for example, say, ‘OK, stop eating breakfast, it’s time to go and play,’ ” Soukup says. “If the mom is folding laundry, we match socks. The child can join in and help. We work hard on not disrupting the natural environment.”
On occasion, KIDS therapists accompany the family to medical appointments. “I’ve even been there when they’ve gotten the diagnosis, and all you do then is hug them and cry with them,” Soukup says.
The program employs a trans-disciplinary approach, naming a primary early-intervention provider for each family who, when necessary, can pull in colleagues with expertise in other areas, like special education, physical therapy or counseling.
“We have children with very mild deficits to children who are more severe-profound,” Schaible says. “But all the parents have concerns for their children no matter what level they’re at.”
According to Whitcomb and Soukup, Schaible is particularly skilled at helping families utilize what’s already present in their environment to assist their children.
During her visit with Rowan, noting his fascination with the springs, Schaible recalls his father’s guitar-playing abilities. She suggests Rowan join some of his dad’s strumming sessions to help him connect with the music.
“It’s all about finding ways to carry over things so (the family) doesn’t have to set aside an hour a day to work on therapy,” she says.
At times, the therapists become part of the family, experiencing joys and sorrows with them. Schaible has stood at the hospital bed of a child being taken off a respirator.
“That’s when you just look at that chest and pray for that child to take one more breath on his own,” she says. “You pray God will perform another miracle, though it might not be this side of heaven.”
More than anything, Schaible believes she’s meant to be a deliverer of hope, and on occasion, a witness to miracles.
She’s been with families who’ve been told their child will never sit, walk or talk, only to see that child prove everyone wrong. She’s watched life expectancies of a month stretch into a year and beyond.
“When I go into a home, I go in with the mindset that I’m not going to limit what God has in store for this child and this family,” Schaible says. “I’m just going to try and help this child, in whatever way I can, develop their strengths and enjoy their lives within that family.”