Araneda started at the Debbie Institute in 1996 where she attended inclusion classes that combine children with disabilities and those typically developing. Araneda and her family moved back to Guatemala where she attended high school and she returned to the U.S. three years ago to attend college. Once she graduates from Miami-Dade College, she hopes to open a center similar to the Mailman in her native country.
“I know how hard it was living in Guatemala with a hearing disability, and I also know how the Mailman helped me to live a normal life,’’ said Araneda, who lives with her older brother in Doral. “They helped me to grow and learn and become comfortable with my disability.’’
The center’s holistic approach and inter-disciplinary training has been used as a model: Both the National Institutes of Health and Centers for Disease Control consulted Mailman staff to set up clinical trials and training in Central and South America.
“A good deal of what we do is to help facilitate the transition to adulthood, and making sure that with independence, the patient can participate in their own health and health decisions in a meaningful way, whether are talking about having a conversation with them or communicating with them through an iPad. In that way, our goals are about education and vocation and life skills,’’ Armstrong said in the third floor of his office. “And on the other end of the spectrum, we have learned about the huge difference that early intervention makes in the life of a disabled child. The sooner we can get in and begin treatment and therapies, the better the outcome, which is why this area is such a critical area for development. ’’
In 1985, Mailman researchers launched a landmark clinical study following 1,000 premature, low birth-weight infants through adolescence to determine the impact of pediatric care and family support on developmental delays of at-risk children. The results showed the earlier babies were exposed to treatment, the better the results.
The findings influenced public policies on early intervention and healthcare access and became the basis of Florida’s Early Steps System to make sure early intervention services are available for young children with special needs from birth to age 3.
By the late 1980s, the center had begun experimenting with the inclusion model, in which developmentally disabled children attend classes with “typically developing” peers at the Debbie School. They also developed a model for transitioning children with developmental disabilities into public schools.
“We found that by pairing them [disabled children], with their peers, they were better stimulated, and developed better. And the ‘typically developing’ became more socially aware and compassionate,” said Armstrong, associate chief of staff at Holtz Children’s Hospital.
In 2009, the center expanded its program to include a clinic to treat children with Fragile X, an inherited genetic condition most common in boys, involving changes in part of the X chromosome, which causes intellectual delays.
William Perez, 11, was one of the clinic’s first patients. .
Now a sixth-grader, he was diagnosed with Fragile X before his third birthday. His mother, Rosie, began searching for treatment in South Florida, but found few options.
Dr. Deborah Barbouth, a pediatric geneticist, led the effort to start the South Florida Fragile X Clinic at the Mailman Center, which opened three years ago.
“We were initially concerned because he [William] was in the phase where he had begun to start talking, but he was babbling. And then he stopped talking altogether, so we thought he might have a hearing problem,’’ said Rosie Perez, 41, of Miami. “He was also very, very active and had trouble sleeping. Individually, they didn’t seem like issues. They were all these little indicators of Fragile X, but we had never heard of it.’’
Perez and husband, Manny , have two other children. The youngest, Olivia, 3, also tested positive for Fragile X, though because she is female there is a chance her condition will not be as severe as her brother’s. “The center has been a godsend for us to get quality treatment without leaving our home,” Perez said. “Basically, everything we need we can get in one place. Now, they are like an extension of our family.’’