Living and teaching in Haiti and Barbados as a married couple for 15 years, Amanda and Brice have always taken on life with courage and open, generous hearts.

 

After their sixth child, Rusk, was born with Down syndrome, the couple decided to move their family back to the Joplin, Missouri, area so they could be closer to more health care resources. In addition to having Down syndrome, Rusk was born with congenital cataracts that affected his vision, and he is developmentally delayed.

 

Rather than feeling overwhelmed caring for Rusk and their five other children, Amanda and Brice felt their capacity for caring expand. “I always wanted to adopt a child, and kids with special needs bring such joy,” Amanda says.

She filled her wish two years ago, when Rusk was 2 1/2. The family adopted Sutter, a little boy from Serbia, who is just one week younger than Rusk. Before Sutter joined the family, he experienced severe neglect and was malnourished. He was developmentally delayed and couldn’t lift his head or sit up. Doctors suspected he also had fetal alcohol syndrome.

 

With the addition of Sutter, the bustling family now has two 4-year-old boys with complex medical needs. Sutter still can’t stand or walk, but he can finally sit up on his own. But Amanda and Brice are up for the challenge.

 

Through an adoption grant, Sutter was able to attend an intensive therapy program in Texas for a week where he received physical therapy.

 

“Physical therapy was only 40 minutes a day,” Amanda says. “Unfortunately, it was a lot to travel all that way for just that.”

 

That experience inspired Amanda to begin researching other, more comprehensive intensive therapy programs that could benefit both Sutter and Rusk. She found one in Florida, but it was too far from the family’s Missouri home and it required a three-week stay, which was nearly impossible for the large family of nine.

Then Amanda discovered the outpatient intensive therapy program at Ranken Jordan Pediatric Bridge Hospital just across the state in St. Louis.

 

“With most intensive therapies, you have to go for three weeks, but it’s hard for families to leave home for three weeks at a time,” Amanda explains. “That’s why Ranken Jordan is so good. They work on occupational, physical, and speech therapies all in one week. And they work you in when it’s convenient for your family. That’s huge.”

 

The Ranken Jordan team was able to schedule Rusk and Sutter for the outpatient intensive therapy program at the same time. Both boys came three hours every day for a week in June.

 

“Scheduling both kids at once was very helpful,” Amanda says. “Ranken Jordan incorporates all therapy disciplines—not just physical therapy—and it allows us to do intensive therapy one week at a time. It maximizes our time.”

 

During the boys’ week of intensive therapy, the whole family came along and stayed at Haven House St. Louis. “It was like a mini-vacation,” Amanda says. “The boys had therapy in the morning while the other kids read or played outside on the playground, which the kids loved. Then in the afternoon, we explored St. Louis. Ranken Jordan is just beautiful. It’s not intimidating or scary, and every room is so well thought out and fun. The boys didn’t cry at all when we came for therapy.”

Amanda was amazed at the progress she and other family members noticed in Rusk and Sutter from intensive therapy after just a week. Sutter is not verbal nor does he use sign language. In intensive therapy, he learned to push buttons on an iPad device to communicate words such as go and stop. This augmented communication has opened new doors for Sutter.

 

In addition, Sutter can now pull up on his knees and he gained strength overall. “He also worked on his reflexes by walking on a treadmill that mimicked different surfaces,” Amanda says.

 

Intensive therapy helped Rusk build strength and independence as he learned to dress himself and participated in various games.

 

“It’s the little things that make their lives better and help them be more capable and independent,” Amanda says. “Now Rusk is able to change his own shirt, and he is also more confident walking. We want him to be able to do as much as he can, and we’re thrilled he can be more independent.”

 

After the week of outpatient intensive therapy at Ranken Jordan, Rusk and Sutter were sent home with exercises to do at home to continue progress.

 

“Every therapist cared so much,” Amanda says. “They made sure we had the equipment we needed when we went home, and they followed through to check on us after we got home. They focus on the long-term goals. We’re continuing to learn and we’re encouraging the boys to be independent and happy.”

 

Sutter had some medical procedures in the summer so therapy has been paused for a few months as he recovers. “We hope to come back to Ranken Jordan for more intensive therapy in November and then continue doing it several times a year,” Amanda says. “Ranken Jordan has been a huge blessing to us.”

Like many brothers, Rusk and Sutter—who look like twins—experience some sibling rivalry and are competitive with each other. But they have their own fan club that cheers them on as they achieve new milestones. With the addition of Sutter, the seven kids’ ages are 17, 15, 13, 7, 6 and two 4 year olds. Despite the age spread, the family is tight-knit and supportive of each other.

 

“We didn’t know much about special needs kids before Rusk,” Amanda says. “Now the whole family is enthralled with Rusk and Sutter. They bring extra joy to us and the older kids fight over whose room the boys get to stay in.”