GREENFIELD — Charlie Boldt is a ball of energy.
The 3-year-old bounced around the living room on a recent Saturday afternoon with a bright smile on his face, giggling as his parents chitchatted, and his older brothers played games.
This hopping around isn’t a bother but a celebrated new development, his parents, Ben and Amy Boldt of Greenfield, said. The little boy only recently learned how to jump, a goal he’d been working toward for months with his therapists; evidence, they say, of the little challenges his Down syndrome presents every day.
But Charlie, like many who live with Down syndrome, has an energy about him that does make him different, they say. It’s a desire to interact with and put a smile on the face of every person he meets.
The Boldts recently shared their experiences with Down syndrome, about the way Charlie has changed their lives, in a book series called “21 Dreams,” a collection of essays by Hoosier parents of kids with Down syndrome. Tuesday marks the seventh volume of the series, created by an Indiana mother of a child with Down syndrome in an effort to raise awareness of the disorder and acceptance of those who live with it.
This year, it features Charlie’s picture and his father’s essay. The 2017 book is slated to be released Tuesday in honor of World Down Syndrome Day.
The international celebration is held annually on March 21 — a nod to the genetic makeup of those with an extra 21st chromosome, advocates say.
Events promoting awareness and inclusion are held across the globe every March. Some serve as fundraisers for further research of the disorder while others aim only to bring the families of those with Down syndrome together.
Down syndrome is one of the most commonly diagnosed chromosomal conditions, according to the Centers for Disease Control and Prevention. Each year, about 6,000 babies born in the United States — one in every 700 — have Down syndrome, data show.The disorder comes with physical features, like flattened bridges of the nose, almond-shaped eyes that slant upward and tongues that tend to stick out of the mouth, experts say. Those who live with Down syndrome are often slow to develop motor skills and struggle with hearing loss, sight disorders and heart defects throughout their lives.
Their life expectancies vary but have improved dramatically in recent decades, jumping from 25 in the 1980s to 60 today, according to the National Down Syndrome Society.
But those born with Down syndrome can live perfectly fulfilling lives, said Jennifer Buechler, creator of the “21 Dreams” book series
Buechler’s daughter, Lauryn, was born with Down syndrome. The diagnosis brought great fear and anxiety – a sentiment she now often finds highlighted in the essays that fill the pages of the “21 Dreams” books.
Buechler said she created the publication hoping to bring comfort to families facing a Down syndrome diagnosis, while also growing a community around the disorder.
She hopes those who read the book, especially families facing the diagnosis, see it as a tool to meet other families, seek help and advice and celebrate their children.
“It makes this big, big world seem a lot smaller,” Buechler said.
The Boldts learned Charlie had Down syndrome minutes after he was born – a rarity, as most couples receive the diagnosis during the pregnancy.What felt like moments after her baby’s delivery, a doctor came to Amy Boldt’s bedside. He asked if Charlie looked like her two older sons; if his eyes were the same shape as theirs had been when they were born, if they also stuck out their tongues at such an early age.
She answered his questions, a sense of fear rushing over her. She listened as the doctor told her his suspicious, that Charlie likely had Down syndrome. She cried.
Ben Boldt said he remembers his mind going blank.
“When you hear the words, ‘Down syndrome,’ …that’s really all you hear,” he said. “All of sudden, your mind starts racing with all these questions they can’t possibly answer because they don’t have all the information.”
As Charlie grew, he taught his parents and siblings patience and understanding as the little boy worked to overcome developmental hurtles.
It took Charlie ages to learn how to crawl or to say his first words, his parents said. For a long time, he wouldn’t eat certain foods if he didn’t like the texture, living off of crackers and refusing to touch a banana.
They continue to rely on therapy centers across Central Indiana to help Charlie develop the motor skills most kids learn on their own. He participates in different speech lessons and programs that will help ready him for preschool.
“Everything takes longer,” Ben Boldt said. “He’ll get there; he just needs more time to do the things other kids learn very quickly.”
Working for inclusion
Kenney and Cindy Montgomery of Greenfield — whose son, Joshua, was featured in last year’s “21 Dreams” book — learned their son would have Down syndrome 18 weeks into their pregnancy. Doctors noticed an abnormality on an ultrasound that made it appear as though their son had something wrong with his head. They quickly ordered special tests, warning the couple that, at worst, the baby would live only a few hours after birth.They spent one horrible night together awaiting the results, before doctors reported back to say Joshua would survive, though he would live with Down syndrome.
The Down syndrome diagnosis brought the Montgomerys great relief because it meant their son would live, but, like the Boldts, they had serious questions about what day-to-day life for Joshua would be like.
The Montgomerys rely on local nonprofits, like Families United for Support and Encouragement (FUSE), to help them connect with educational programs to further Joshua’s development. Joshua, now 7, spends school days in a special education classroom at J.B. Stevens Elementary School, where he gets a lot of one-on-one attention, they said.
Joshua also attends art, music and gym classes with children his own age, something his parents are grateful for as it helps him develop friendships while his peers learn to be inclusive.
Joshua’s siblings aid that process, too, the Montgomerys said: their 9-year-old daughter, Emily, regularly talks with her friends about Down syndrome and gives presentations on the disorder during her classes.
The Montgomerys regularly attend Down syndrome- centered events that allow them to get together with families who truly understand what living with the disorder is like, Cindy Montgomery said.
Writing an essay for “21 Dreams,” reading the essays penned by families year after year, has helped in the same way, she said.
“It’s nice to know you’re not alone,” Cindy Montgomery said.
World Down Syndrome Day is a global day of awareness marked each year on March 21 by events and fundraisers that promote acceptance of those with Down syndrome.
The date of World Down Syndrome Day serves as a nod to the dismorder most commonly caused by a triplicate of the body’s 21st chromosome.
The day was first observed on 2006 and was officially recognized by the United Nations in 2012.
“21 Dreams” features the stories of 21 Hoosier families whose children live with Down syndrome.
The publication features essays penned by parents and photographs of their children.
Creator Jennifer Buechler started the book series to promote awareness and inclusion of people with disabilities. Each volume’s cover features a portrait of her young daughter, Lauryn, who was born with Down syndrome.
Copies of the series’ seven volumes can be purchased at www.21dreamsproject.com.