Defeat the odds

Down Syndrome baby thrives

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When Chase and Susan Graves found out their first child would be born with Down Syndrome, they were not only OK with it; they thought it was a privilege that God chose them to be his parents.

“He’s going to have some challenges. Who cares?” Chase Graves said. “All kids have challenges.”

Susan felt the same way.

“We felt like we were hand-picked to be his parents,” she said. “We just felt so blessed. I feel like he is a gift of joy, and it is an honor to be his mother.”

They also knew they would need some help.

Early Childhood Intervention got involved. Specialists worked with little Langston, who turned 3 last week, on a regular basis to develop his speech and strengthen his muscles. The cost to work with ECI is minimal because it’s covered by insurance and the specialists practically become part of the family.

“The whole organization has been a blessing to our family, a godsend,” Susan said. “We didn’t have to take Langston to a center; they came to our home. There’s so much growth in the brain that happens between 1 and 4 years old. It’s essential for his success.”

Individuals with Down Syndrome have larger tongues – Langston does a pretty good lizard impression – and can be developmentally slower than other children. Their muscle tone doesn’t develop quickly, so they have difficulty sitting up or holding their head up, but having a personal trainer as a dad might help. Chase Graves is the fitness director at Chase Graves Functional Strength in Bellville.

Because Langston just turned 3 years old, he has “graduated” from ECI but there’s no question that the family will stay in touch with Ester Baker and her team, which includes occupational therapist Sandy Armstrong, speech therapist Brandy Bonewald and physical therapist Roxanne Reinecker.

ECI’s Region 3 serves 13 counties and the school districts within those counties, and Baker’s team of four manages a caseload of up to 60 children at a time.

“The families are the first teachers so we educate the parents and extended family,” Baker said. “With Langston we started at birth. We had to strengthen his body and muscles so he could crawl, so he could hold a spoon, so he could smile, so he could hold a rattle in his hand and be cognizant that it was there.

He’s got a great vocabulary. The family has been great. We want them to continue and the family already has the basic structure of their daily routine, so when we’re out of the picture the parents know what to do so there’s no regression.”

It also helps that Langston has little sister Ashtyn, born just 16 months after him.

“Kids challenge each other,” Baker said.

Ashtyn does not have any special needs but is a bit of a handful, the parents acknowledged.

Chase said he and his wife have talked extensively about how to plan for mainstream education and getting Langston comfortable with other kids. Teachers have been asked not to treat him differently than other kids. In fact, Langston started this week in a preschool program at Selman Elementary.

The parents want to encourage him to think and speak and laugh – it just may be on a different time frame than other kids.

“Chase was so ready to be a special needs dad,” Susan said. “I was the one that had to work through the educational part. He was more prepared mentally, emotionally.”

Sometimes people say they’re sorry when they find out that the Graves’ have a Down Syndrome child.

“Don’t tell me you’re sorry; I’m good,” Chase said. “I didn’t have special needs and I was probably more difficult to raise than he is. What kid doesn’t have something they need to work on?”

Kids with Down Syndrome naturally have a lot of joy, and while it’s not proven that the extra chromosome is the “joy chromosome,” Langston is a happy, well-behaved and determined child.

And while the Sealy couple knew 12 weeks into the pregnancy that they were going to have a Down Syndrome baby, they never thought twice about doing anything differently.

“I asked, ‘Is the baby alive?'" Chase recalled. "They said yes, and I said, ‘As long as he’s alive, he has purpose.’”

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