Special needs boy gets rare opportunity -- much to the delight of his sister and mom
Aug 25, 2014 at 12:07 PM
Eleven-year-old Emma Laughlin spilled tears as her 12-year-old special needs brother and tight-knit friend, Jason, initiated the process from his wheelchair to play the Star Spangled Banner.
Tears also flowed from audience members in attendance to watch the Cleveland Triathlon just before 7 a.m. July 27.
This marked the first time the U.S. national anthem kicked off the triathlon -- and it wasn't a usual performance method.
Except for a rare word here and there, Jason cannot talk or walk by himself. He didn't play the anthem on a musical instrument.
Jason has polymicrogyria, a condition characterized by abnormal development of the brain before birth. In people with the condition, the brain develops too many folds, and the folds are unusually small.
The Norwalk Middle School seventh-grader is frequently congested, battles pneumonia and must use a vanguard to communicate with others. The keyboard-like device contains various graphics inside keys that correspond to words the user wants to say. If the person presses enough keys with the right words or pictures, a sentence appears. On a recent day, Jason wrote "Nana go today," meaning he wanted to see his grandmother. Jason has an aid in school and special arrangements are in place for him to use his vanguard in school.
During a recent visit with Jason, someone noticed that sentence and commented about it. A smile flashed across Jason's face.
The 90-pound, roughly 56-inch tall boy smiled several times during an interview. He also grinned when he was the center of attention before the Cleveland triathlon, a microphone positioned by his vanguard so all could hear. He got the opportunity through people who undergo therapy at the same place as the youngster.
"Everybody was just in awe," said the children's mother, Dianna.
Jason might have special needs, but Emma referred to him as simply "special." He's special because he's different than other children, she said. He laughed after Dianna said she and her husband, Jason Sr., first knew something was wrong when Jason was 8-months-old. He wasn't sitting up on his own or holding his bottle by himself.
But now, his sister appears to be his support, rock and strength.
While watching the siblings, it becomes obvious they're tight-knit -- and even best friends.
Emma, a Main Street School sixth-grader, placed her arm around her brother's back. He laughed as he pressed a key that made a voice say "Go Bucks." She rubbed his head and gently held his arm, while Jason's mouth opened and his eyes widened. Emma playfully pulled on his ear and the incoming middle school student smiled. He smiled ear to ear and tried to stand on his chair as he played the Star Spangled Banner, Dianna said.
A recent dream Emma had involving her brother was hardly a cause for her to smile. In the nightmare, Jason got shot in the back of his head and died. After she awoke, Emma climbed into her brother's bed to ensure he was OK. She found him unharmed and wrapped him in a big hug at 4 a.m. Jason, in turn, scratched Emma's back.
"I was glad," said Emma, who eagerly tried to encourage Jason to speak or spell out sentences using his vanguard during an interview.
Jason cried every day of the two weeks Emma attended camp recently.
While she didn't show it, Emma said, "I'm kind of mad that he has this." She added she wishes he could run or walk like she can.
But that anger obviously isn't directed at her brother.
"He's special," Emma said.