Program Helps Families Address Developmental Concerns
ORLANDO, Fla. – Three and a half years ago, Bibi Brown took her 18-month-old son to a pediatrician after the child stopped talking and started screaming.
The doctor told the Orlando-area mom to relax. The child’s height and weight, after all, were fine. She just needed to give her son a little time.
It was the same advice she’d hear a few months later – and a third time after that.
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“But I knew there was something wrong,” Brown says. “My son had talked before; why couldn’t he now? And he had started screaming and crying all the time – I think because he was so frustrated at not being able to communicate what he wanted.”
Brown searched for a specialist to assess her son, who eventually was diagnosed with severe autism. But the process took months and left her an emotional wreck. So when she learned about a new program to help parents like her, she not only embraced it; she applied to be its full-time local coordinator.
Help Me Grow – which identifies kids at risk for developmental or behavioral disabilities and connects them to community-based programs that can help – is a national initiative that expanded to Central Florida this year. In the Orlando-area, it’s run by the Heart of Florida United Way, allowing concerned parents in Orange, Osceola and Seminole counties to get answers simply by calling the nonprofit agency’s 24-hour 2-1-1 Help Line.
“My own story mirrors what I hear from many of the families who call us,” Brown says. “With kids that young, the pediatricians often say: ‘Well, let’s wait and see how this plays out.’ But we know parents shouldn’t wait, and with Help Me Grow, they don’t have to.”
Once a child is enrolled in the free program, parents have access to an online evaluation tool that can help them determine whether there’s cause for concern. If so, Brown and her small staff will connect the family to local providers for diagnosis, health care, speech therapy, physical therapy, education and other services. Those services may be free, charged on a sliding scale or covered by insurance.
If there’s a waiting list for a provider, as is sometimes the case, Help Me Grow staffers will stay in contact with the family to offer support and beneficial activities parents can do at home with their children in the interim.
“We’re not just saying, ‘OK, you’ve got the phone number. Now go do it on your own,'” Brown says. “We follow up to make sure you can do something immediately.”
Experts in childhood development have known for decades that early identification and intervention is critical for kids with special needs. The brain’s neural circuits, which create the foundation for learning and behavior, are most flexible during the first three years of life, after which they become increasingly difficult to change.
A child’s language, cognitive powers and social skills all build on that early brain development.
“I’m a big supporter of early intervention and Help Me Grow,” says Ilene Wilkins, president and CEO of UCP of Central Florida and chairman of the Florida Interagency Coordinating Council for Infants and Toddlers with Disabilities. “It’s mind-boggling to me that we still encounter so many families that don’t get good guidance – that are told, ‘Oh, he’ll grow out of it.'”
UCP – which provides support, education and therapy to children with special needs – has programs that start for babies as young as 6 weeks old. Most of those infants have Down syndrome, which usually has distinctive physical traits and is easier to identify. Children with autism often go years without intervention.
Currently, Help Me Grow is available in 25 states. Florida became part of the network in 2012, launching a pilot program in Tampa and Miami. In 2014, the Florida legislature approved a $2 million expansion to bring Help Me Grow to more areas, including Central Florida.
Though the Orlando-area program’s Jan. 6 launch had little fanfare, it already has had 133 families seek help, mostly in response to 2-1-1 Help Line operators asking people who call for other reasons if they have children and, if so, whether they have any concerns.
“That’s a huge number for launching so recently,” says Ashley Blasewitz, a spokeswoman for the agency. “We think there’s a big unmet need.”
Campaigns to educate local doctors and the public are in the works.
Silvia Haas, executive director of OCA – which offers therapy, recreation, summer camps and vocational training for kids with special needs – applauds the effort.
“The system is very hard to navigate on your own, and it’s such a shame because you want to get your child help as soon as possible,” she says. “One of the issues is that programs come and go as providers lose funding. Just trying to keep up with who does what is ridiculous.”
And for some parents, simply acknowledging that something may be wrong with their children and seeking answers are hurdles enough.
“Being a single mom, and a young mom, sometimes you already feel like people are judging you,” says Tania Reyna, 22, of Orlando, whose nearly 3-year-old son seems to lag in language skills and emotional maturity. “You’re afraid to ask for help.”
The new program has provided her an initial evaluation and helped to enroll her son in an Early Head Start program.
“The truth was, I was very concerned about him,” Reyna said. “And I’m very, very grateful I called.”
As for Brown, whose son turned 5 last weekend, she is celebrating a miracle – being able to host a birthday party for him and invite his friends.
“He was very anti-social before. He never really wanted anything like this,” she says. “This year, he actually said, ‘Party? For me?’ and he was so excited. For us, that’s huge.”
© 2016 The Orlando Sentinel
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