Hope on the horizon for children in need of services

MEEKER I When Misael Rosas was born, his mother Susana knew something was wrong immediately. Her baby was diagnosed shortly after birth with Goldenhar syndrome.
The condition, also known as Oculo-Auriculo-Vertebral (OAV) syndrome, is a rare birth defect characterized by incomplete development of the ear, nose, soft palate, lip and/or jaw; the formation of growths on the face and around the ears, and strabismus, or crossed eyes. In the most severe forms, children with Goldenhar syndrome can suffer developmental problems with vital internal organs as well.
“There can be a lot of different symptoms associated with it (Goldenhar) because it’s a syndrome,” said Horizons speech therapist Natosha Clatterbaugh.
“I asked all the doctors if it was something I did during the pregnancy, but they told me no. It’s genetic,” Susana said, tucking her only child more firmly into place on her lap.
Now 3 years old, Misael has had three surgeries to correct oral and facial deformities, and there may be more in his future. He had his first surgery when he was just 6 months old.
“It was really hard, especially with a first baby,” Susana said of the early months with her son.
Isolated and depressed, and with her husband working away from home, Susana struggled to cope with Misael’s physical needs.
“The first few months, I had to put a towel at his mouth to feed him his milk. It was very stressful.”
Shortly after Misael’s first surgery, the Rosas were connected with the Horizons program in Meeker. Misael was identified as a candidate for motor therapy and began to receive services through Horizons.
This year, he “graduated” from the Horizons program and entered preschool, where his special education needs are managed by BOCES.
“With a kid like Misael, he has made a lot of progress over a short period of time. Susana has been fabulous, taking suggestions and working with him,” Clatterbaugh said. “The parents are the most important in the child’s life, and that’s kind of our philosophy at Horizons.”
“They’ve helped me a lot,” Susana said.
Besides early intervention, Horizons also has a support program for families with developmentally delayed or disabled children eligible for services to be reimbursed for expenses related to the care of the child, such as home modification, adaptive equipment and respite care.
Misael started crawling when he was about a year old. He started walking just before his second birthday. Today, to an outside observer, it’s difficult to tell those milestones were delayed in Misael’s development.
At preschool, Misael continues to receive therapy for motor skills development and speech therapy.
“His language (development) was significantly behind,” Clatterbaugh said.
“School has helped him a lot. He’s talking more,” Susana said with a smile. Misael is learning English and Spanish at the same time.
Misael gets an annual check-up with a team of oral/facial physicians to guard against scarring and deformities that are a part of the syndrome. He’ll continue those check-ups until young adulthood. As far as his developmental progress, Clatterbaugh said there’s no apparent limit. His therapists will continue to present new challenges for him as long as he continues to progress.
The fact Misael was diagnosed early, screened for developmental delays, and received intervention and care from infancy has played a big part in his success.
“Anything you get in there at that age (birth to 3) can make a profound impact,” Clatterbaugh said regarding the importance of the early intervention screening and services.
Parents may be anxious or fearful of subjecting their child to a screening for developmental delay. Leigh Ann McLaughlin, whose daughter Logan has benefited from Horizons’ services, wrote, “While we were hoping for the best for Logan, we realized we weren’t actually doing what was best. We were initially hesitant to accept Horizons’ services. We feared that receiving services would be perceived as a reflection of our parenting instead of the reality that it is: all babies are not the same and therapy means hope. Finally, we decided to overcome our stigma of developmental delays and accept that Horizons should be part of our lives.”
Horizons annually conducts a Children’s Health Fair in Meeker and in Rangely in February or March. All children from birth through age 5 are eligible for the free screenings to identify any delays in development.
Children can be referred by physicians or providers and qualify for ongoing services if a delay is identified in more than one area of development. Ongoing services may include speech therapy, motor therapy and service coordination. A service plan is designed by therapists and families together to meet the unique needs of each child. Services are provided in the home, a community setting such as a park or gymnastics class, or a day care facility. Therapy is play-based and involves parents and caregivers.
Horizons’ Little Points of Light program raises funds so children like Misael can receive services free of charge, and is specifically directed toward early intervention.
“In 2011, Rio Blanco children comprised 21 percent of our early intervention program, while Rio Blanco families comprised 8 percent of our family support program,” said Deidre Pepin, grants and publications coordinator for Horizons. “Funding for each of these programs has suffered dramatic cuts at the state and federal levels. While the funding has been reduced over the years, the need for our services remains the same.”
Currently, there are five children receiving Horizons’ services in Meeker, and 12 throughout Rio Blanco County.
“Because early intervention is critical in the first three years of a child’s development, Horizons turns no child away. Early intervention makes a real difference and Horizons relies on donations from individuals and businesses in the community to help meet the needs of every child. For our Little Points of Light campaign, donations that come from Rio Blanco are used in Rio Blanco,” Pepin said.
To donate to the Little Points of Light campaign, please see the Horizons ad below.