Four-year-old Ivy Joy Knight of Wheaton loves to dance, wears her favorite princess tiara around the house, chases friends on the playground, and this summer looks forward to swimming and horseback riding.
"I don't know what we would have done if we hadn't asked questions and sought help right from the beginning," says Missy Knight, who together with her husband, Kevin, welcomed their firstborn, a beautiful 5-pound, 14-ounce daughter, in October 2006 at Central DuPage Hospital.
Where to find helpThere are a variety of agencies where families can find assistance for their children.
• Illinois Department of Human Services: The IDHS helps children, ages birth to 3, with disabilities or delays, to learn and grow. Infants and toddlers are tested to see if there is a delay in movement, learning, dealing with others, behavior and self-help skills.
If needed, a plan is written to set goals and identify needs. Families, with the support of service providers, help infants and toddlers reach their goals.
How to apply? Visit the Department of Human Services website at dhs.state.il.us/ and use their DHS Office Locator (listing your town and ZIP code) to find an early intervention office in your area. Call (800) 447-6404. For automated service, call (800) 323-4769.
• Clearbrook Center Early Intervention: 1835 W. Central Road, Arlington Heights, (847) 385-5070, clearbrook.org
• Cook County, Child & Family Connections Early Intervention: 945 W. George St., Suite 300, Chicago, (312) 942-7800
• DuPage County: PACT, Inc. Early Intervention, 750 Warrenville Road, Suite 300, Lisle, (630) 493-0400
• Kane County: DayOne Network Early Intervention, 1551 E. Fabyan Parkway, Geneva, (630) 879-2277
• Lake County: Early Intervention, 2424 Washington St., Suite 210, Waukegan, (847) 360-7353
• McHenry County: Early Intervention, 365 Millennium Drive, Suite A, Crystal Lake, (815) 477-4720
Like most new parents, the Knights counted baby's fingers and toes, marveled at their tiny bundle of joy and dreamed of celebrating milestones like baby's first smile, first word and first steps.
"While every child develops at their own pace, certain milestones are important," says Cara Long, a registered nurse and parent liaison at Easter Seals DuPage and the Fox Valley Region, an accredited outpatient pediatric rehabilitation center with locations in Villa Park, Naperville and Elgin. "These milestones are important because they are good indicators of possible language, motor skill, social/emotional or cognitive delays, autism or other learning disabilities."
If a child misses a milestone or if something doesn't feel quite right, Long says it might indicate a problem and be a signal to call your pediatrician. "The most important thing for parents is to follow their instincts and share their concerns with their pediatrician," she says.
With nearly 25 percent of American children younger than 5 at risk for developmental delays or behavioral problems, according to the National Survey of Chidren's Health, Long says she hopes a new national Easter Seals Make The First Five Count program will empower parents to ask questions, seek early help and ensure all children have access to early identification and care services.
Long said decades of research show early experiences play a vital role in brain development, and early intervention services can change the course of a child's development.
While children at risk of a developmental delay or disorder routinely are referred for early intervention by their physician, not all cases are so clear cut. Questions and concerns can leave parents bewildered and wondering if their child is on target and where to seek answers.
At four months, Ivy Joy was diagnosed with a weakening of the muscles on her right side.
"My mom noticed Ivy Joy's weak and shaky right leg first," recalls Missy Knight, who says she trusted her mother's 35 years of parenting experience and felt she must have known something wasn't quite right. "We also noticed she wasn't reaching for toys with her right hand and wondered why."
An MRI and CT scan showed Ivy Joy had a stroke before she was born.
"Initially we were told by a neurologist she wouldn't walk and may not talk," recalls Knight, who called Illinois' Child and Family Connection Services for information on early intervention services. Following evaluation and wait listing, the Knights began looking for private placement services.
"Easter Seals physical therapists immediately got the ball rolling as they worked with our 6-month-old daughter and taught us to assist her in building left-side strength, rolling over and sitting up," Knight said. "We learned the importance of tummy time and using both hands to roll over. Ivy Joy skipped many steps and actually went right from sitting to walking shortly after her first birthday. She never crawled."
By eight months, occupational therapists helped the tiny tot learn to open her fist, turn palms up and bear weight on that side. Thanks to speech therapy assistance, she was a chatterbox after just nine months of therapy -- using baby sign language by 15 months and speaking her first word at 20 months.
Ivy Joy's mom says the little girl who wasn't supposed to walk, now runs and recently danced in a ballet recital wearing a sparkly pink tutu leaving a trail of glitter.
Four-year-old Charlie Krupka's story isn't any less amazing. Born early at only 25 weeks gestation, Charlie arrived weighing 1 pound, 15 ounces and spent his first 97 days of life surrounded by the lights, monitors and flurry of specialized medical equipment and care in Good Samaritan Hospital's neonatal intensive care unit.
Diagnosed with bilateral brain hemorrhage, a perforated intestine, respiratory and vision challenges, Charlie's parents, Michael and Tracy Krupka, rode an emotional roller coaster as they tried to come to grips with their son's needs.
"As an occupational therapist, I understood the need for early intervention and the benefits of therapy," Tracy Krupka said. "Easter Seals helped Charlie, but also helped me understand I wasn't alone with a medically compromised child."
Charlie now navigates his Lily Garden Child Development Center with a power wheelchair and takes pride in his specially adapted tricycle he uses on the playground.
"He's really smart, very verbal and computer-oriented … a high-tech kid," said Tracy Krupka, who lauds the work of her son's therapists. "Charlie loves sports and figures out a way to do everything from T-ball to rock climbing and horseback riding."
Why early intervention?
Early intervention can help to strengthen children's physical, social, emotional and intellectual abilities from infancy, says Long, who represents Easter Seals, a national organization offering the largest network of early education and care services for children with and without disabilities.
"Early identification and early intervention services are critical for every child because the first five years are such an intensive developmental period," said Long, who notes that by age 5, a child has typically begun to develop deep skills in language, problem solving, balance and coordination, socialization, independence and more. "These early skills are the building blocks for future school success, a predictor of high school graduation and even adult workforce success."
Children, she says, may go years before health professionals or teachers identify developmental issues and only half of those diagnosed with a special need actually receive appropriate services.
Long's observations are on target, according to the 2007 National Survey of Children's Health completed by the U.S. Department of Health & Human Services, which found that each year 1.45 million children who are at risk for developmental delays fail to be identified.
According to the study, nearly as many children are eligible for early intervention services, but never receive them and fewer than 1 in 5 are properly screened to identify a special need.
"Too many young children simply aren't getting the services they need when they need them most," says Long, herself the parent of three, including one child with special needs. "Millions of children enter school with learning and health issues, which put them far behind their peers and which can have a dramatic and lasting impact on their ability to meet their full potential."
According to Tara Kehoe, a Villa Park resident and speech/language pathologist affiliated with Easter Seals DuPage and the Fox Valley Region, speech concerns typically top the list of worries for parents of toddlers and preschool age children.
"The development of speech and language skills is strongly linked to cognitive ability, reading, writing and social relationship skills," Kehoe said. "While each child develops speech and language skills at a different pace, there are things parents can do to help boost speech and language development."
Believing your child will grow out of a speech/language problem can delay intervention and could impact your child's ability to learn and communicate in the future, she says.
Kehoe advises parents to seek assistance sooner rather than later and recommends books like "Talking On The Go" by the American Speech-Language-Hearing Association as an important reference for incorporating communication and language into daily living activities.
Long said parents may suspect that something isn't right with their child's development but have no idea where to turn for help.
"As a parent, it's important to seek immediate help for any concerns and not take a 'wait and see' approach," Long said. "You don't need to wait for a medical diagnosis to seek answers and receive services. Parents know their child better than anyone and if something doesn't seem right, ask questions."