"Evan’s teachers and therapists help me help Evan... ." - Jan Billingsley, Evan's mom
His small fingers and thumb curl toward his palm as he forms the sign language symbol for the letter E. Then he plants the signed letter firmly in the middle of his chest and smiles. The tiny gesture speaks volumes as he signs his own name—I am Evan it says. With each passing day, this two-year-old is developing his own sense of self.
A child with Down syndrome, Evan Billingsley’s developmental milestones are hard-won accomplishments for him. “Evan didn’t walk until he was 27 months old, but now that he’s mobile, there’s no stopping him,” says Jan Billingsley, Evan’s mom. “We waited so long for him to walk and now we chuckle and think, ‘We wish he would slow down a little.’ A trip to the mall or a restaurant is an adventure now that he’s on the move.” Evan’s dad Steve Billingsley concurs. “Evan is a little ball of energy, always exploring and greeting people when we’re out. He’s a social butterfly, a really happy kid.”
Happy is a descriptive word also used by Evan’s teachers and therapists at Siskin Early Learning Center-East Brainerd (SELC-EB) where he has been attending since he was 8 months old. “Evan is a bubbly child and very playful. He loves joining in play with his friends,” says Amanda Bunch, Evan’s teacher. “In our inclusive classrooms at the SELC-EB, children with special needs like Evan are surrounded by friends who are typically developing.” Evan watches his friends closely she says. “Evan’s therapists and I work with him daily to help him with developmental skills but just as important are the lessons he’s learning by watching his friends.”
A recent playground victory is a perfect example. Amanda relates that after several weeks of watching his friends climb the ladder on the playground slide, Evan did it, too. “We were so excited and so was he. Evan thrives on praise. It’s a big motivator for him, and what we have found is that if we set high expectations for him, he completely rises to those expectations. He’s such a great kid.”
Climbing the ladder on the slide is just one milestone in his development, and each week brings mastery of new skills. “Evan works very hard for his movement because of his low muscle tone, which is common in children with Down syndrome. Stairs and uneven surfaces can be challenging for him,” says Lisa Spurlock, a physical therapy assistant who meets with Evan, his family and teachers monthly. Recently, though, Evan joined his friends in an impromptu performance on a small theatrical stage in one of their play areas. “Navigating the small step onto the stage and down again was difficult for Evan, but because of his strong desire to keep pace with his friends and join in their fun, he did it,” says Lisa. “The quality of Evan’s mobility—albeit delayed—is really good because we spent a lot of time offering him support in activities low to the ground and then spent a long time helping him with cruising skills.” (Cruising refers to babies pulling up and taking assisted steps while holding onto an object like a table or a sofa.) Lisa says when it came time for Evan to put all those building blocks of walking together to take his first steps, he was ready. He had the confidence and the motor development to take off.
Conquering some feeding and swallowing challenges are next on Evan’s plate. Again, low muscle tone makes it difficult for Evan to coordinate his swallowing to eat and drink safely. “Evan’s teachers and therapists have been a huge help for me on this,” says Jan. She laughs as she comments that Evan would still be on baby food if he didn’t go to the Institute three days a week. “I’m just so paranoid about him choking.” But she’s overcoming her qualms and introducing some solid foods into Evan’s diet at home. “With my first child, those developmental milestones just happened naturally so I didn’t actually have to facilitate them. I didn’t pay attention to the actual mechanics of something like learning to roll over,” says Jan. “Evan’s teachers and therapists help me help Evan with those skills at home.”
Evan also is learning basic communication. In addition to signing his name, Evan signs mommy, daddy, more, milk, and his vocabulary is increasing all the time. He has a special sign for his big brother Andrew, 5, and has begun making vocalizations that are the rudiments of speaking his brother’s name. Jan and Steve can’t wait for that day.
Jan says that seeing Evan and Andrew together is “a great thing.” The two boys wrestle and pick on each other just like all brothers do. “I want them to be close,” says Jan.
Steve and Jan also speak candidly—and emotionally—about the future. “My main concern … is that I’m an older dad,” says Steve. “There will come a day when I can’t be there for Evan. As both my boys get older, I wish for them what every dad probably wishes for his children: I want them to be happy, I want them to know the Lord, to be independent, to have jobs, and to contribute to society.” He pauses to swallow the lump that has formed in his throat. “And I hope Andrew will love and look out for his little brother through childhood and into adulthood.”
Sure, the Billingsley family will have challenges along the way as Evan gets older. More important, though, are the immeasurable blessings this strong, close-knit family will, no doubt, enjoy as their family matures and as Evan grows and learns and becomes his own person. Siskin Children’s Institute is glad to have been an early part of Evan’s and his family’s journey as they build a happy, fulfilled life.