The following is a sponsored post.
By Eduardo Balseca
“As you can see, I’ve got my hands full.” Those were the first words Veronica Peralta, the Founder and Executive Director of Adacapia Autismo said to me when we met to talk about her therapy center. She was referring to her 17-year-old autistic son Tommy. It was a therapy day for him, and he was balking at the idea of getting out of the car.
Tommy has Autism Spectrum Disorder (ASD), a neurological and developmental condition that begins in childhood and lasts a lifetime. ASD affects how a person behaves, interacts with others, communicates and learns. The disorder includes what was known as Asperger’s syndrome and generalized unspecified developmental disorders.
Watching how Veronica handled Tommy’s behavior, I got my first glimpse of her strength, and calm and centered approach to what she deals with every day. She used the skills she has learned over the last 15 years to get Tommy to focus on her and do what she was asking, out of his love for her.
This type of scene is repeated every day at Adacapia Autismo, with Tommy and the other nine children who now receive regular therapy at the “association,” a word that Veronica uses a lot.
“We are an association, because the families of our kids are an extension of our staff. They volunteer when they can. And they participate in the therapy sessions as well,” she said. “Without volunteers, we couldn’t afford to do what we do. We have staff psychologists and art, dance and music therapists to work on sensory disorders, but we need to have continuous interaction with the kids in a one on one type of relationship. Someone needs to be focused on them the whole time they are here. That’s how they thrive. Without volunteers, we couldn’t treat as many kids as we do.”
Veronica explained that “the cost of therapy for autistic children in Cuenca (and throughout Ecuador) can run from $10 to $40 per hour. Families simply can’t afford the intensive treatment that their autistic children need. So, we need volunteers to extend the time of attention each child receives.”
Adacapia Autismo offers parents a chance to improve their child’s socialization skills without crippling them financially. Without it, many of these children would be left at home without a chance to grow their social skills. And that means without a chance to move forward into any type of “outside” life. They won’t have the chance to build social relationships, and that is what Veronica says is the most important thing that autistic children need to do to be able to live within the constraints of their condition.
“The concepts of how to treat autism and what realistic expectations should be, have changed significantly since Tommy was first diagnosed with autism 15 years ago. Now, most of the experts believe that sensory integration offers the best chance of changing these kid’s lives for the better.”
Sensory integration therapy aims to help kids with sensory processing issues (which some people may refer to as “sensory integration disorder”) by exposing them to sensory stimulation in a structured, repetitive way. The theory behind it is that over time, the brain will adapt and allow kids to process and react to sensations more efficiently.
Many therapists now use this type of exposure as part of a more extensive “sensory diet” treatment. It includes not only things like balance treatments, movement therapy and structured exposure to sensory input, but also carefully designed and tailored physical activities.
The routine of activities in a sensory diet fits a child’s exact needs and schedule. They can be done at therapy sessions and with training of the parents, at home.
“The most important thing we do here is train parents in how to work with their children at home. They need to build a sensory bond with their child. It’s so important if they want their child to move forward,” says Veronica.
“Some kids, like Tommy, can take speech therapy for years and still not move forward with their language skills. But, with the correct parental involvement in the therapy, these kids start to have leaps in their speech. When I started to get actively involved in Tommy’s social skills development, we built a type of conversational speech that I (and my husband) understand. It allows us to communicate with him. Not always perfectly, but in a way that he can get his needs met and we can get responses from him that we need.”
Adacapia Autismo is the only program offering therapy and training parents at the same time. Veronica explained that they are educating parents not only on how to interact with their autistic child, but also to learn to accept that their child’s condition is not their fault.
“Imagine, these parents had a beautiful baby who they had all these plans for. They saw engineers, doctors, artists and they dreamed of watching them grow to be spectacular people. And then slowly, they came to realize that their child was different. And usually, at about the age of 2 or 3 years old, a diagnosis of autism comes and wipes away all of those hopes and leaves behind grief for what might have been,” said Veronica. “We help them to see that this isn’t their fault, and that while their child may never be who they planned, they can still improve their bond with them and let go of the blame they put on themselves.”
ASD is perhaps one of the most complex disorders a family can face. The diagnosis is overwhelming for many parents and often causes a breakdown of the family unit.
“What you’ll find is that many marriages fall apart under the stress of an ASD diagnosis, usually leaving a single mother to care for the autistic child,” said Veronica.
“Even in families that stay together, the stress of managing an autistic child can be overwhelming. What we are trying to do is teach families techniques they can use to build a bond with their child. So that they can better manage the day to day complexities of their situation. Even then, they still have a team inside Adacapia that can support them.”
The statistics for autism offer little insight into the cause of the disorder. There are a set of people who believe that vaccines are the cause of autism in their children. Veronica believes it is environmental, starting with toxins that the mother may have had in her body during pregnancy. “Vaccines do appear to exacerbate the severity of autism in some children, but most autistic kids are already looking at a diagnosis of the disorder before they even start to get vaccinations. Now, we suspect that environmental epigenetics—that is the deterioration of the mother’s genetics due to environmental contamination—causes immune problems that are then expressed as inflammation of the nervous and digestive systems. And these have a huge impact on fetal development.”
Regardless of the cause, there is an alarming growth in the number of children being diagnosed with autism. Studies in the United Sates suggest that one in 66 births have some degree of autism, and the diagnosis of the disorder has been growing annually at about 30 percent.
Here in Cuenca, the estimate is that around 300 children have some level of ASD.
Looking for Volunteers
Adacapia has its own issues to deal with. The cost of providing therapy is high, and staffing is always an issue. “Our volunteers are what keep us alive. Contrary to what some people think, people don’t need to be occupational therapists or psychologists to help us with therapy here. They just need to understand the basics of sensory integration and how to help the children develop social skills by playing. And we can teach them that. What we need is people who can handle being ignored for 30 minutes, or yelled at, or hugged unexpectedly,” said Veronica with a laugh.
The Adacapia Autismo association is doing great things. But now, they’re asking for your help. They need more volunteers. People who are willing to give a few hours of their time each week to devote to changing a child’s life. It’s a big task, but the rewards can be amazing. According to Veronica, “when you see a big smile come to the face of an autistic child because of something you did, you’ll never feel the same way again.”
Volunteers of all skill sets are being recruited to help Adacapia. But, an especially high need is for volunteers who have experience in occupational therapy, play therapy and/or are familiar with sensory integration programs.
If you would like to volunteer to change a child’s life, contact Veronica at: email@example.com
This non-profit profile has been supported by a grant from Meisner Financial Services, Inc., firstname.lastname@example.org, 093 998 4769.