Date Published: January 26, 2021
Gabriel Rivera’s parents got the news just before Christmas 2016. Their little boy has autism, the experts told them. They felt a mixture of sadness, worry, and shock.
But they focused their energy on helping the 3-year-old. His mother, Imayrin Padua, read every book she could find about autism. She and husband Jorge Rivera arranged for Gabriel to receive speech, occupational, and other therapies at a medical school campus. But nine months later, everything came to a halt.
The family lived in Puerto Rico, which was hit by deadly Hurricane Maria in September 2017. Residents endured months without power, phone service, and other basic resources. “Everything stopped: the education, the services,” Rivera says.
Several years later, they moved to Massachusetts and began looking for autism resources in their new community. They heard about SPARK, the largest study of autism, and joined. They submitted saliva samples for DNA analysis, to help SPARK find more genes that are linked to autism.
Padua says that her family wants to help researchers understand autism. “There are more questions than answers with autism, and we would love to be part of finding the answers, by giving our testimony about our journey,” she says. In joining SPARK, she also hopes to learn if other mothers had similar experiences to hers.
Something was Different, from the Beginning
Padua’s pregnancy with Gabriel was difficult. He moved less in the womb than his older sister had, she recalls. Padua developed a complication called preeclampsia, which causes high blood pressure, and had to deliver Gabriel early by an emergency Caesarian section. Gabriel was just 4 pounds at birth.
As a young child, he struggled with several infections, including the flu and the chikungunya virus, which is spread by infected mosquitoes. He did not walk or talk as soon as his older sister had, nor did he make eye contact or play with toys like other toddlers. He communicated mostly by crying or having tantrums, his mother says. He had extreme reactions to some of his senses, and could not tolerate the sand at the beach.
Rivera, Gabriel’s father, wondered if his son had a sensory processing condition. That condition, like autism, involves unusual responses to the senses of taste, smell, sight, hearing, or touch.
When Gabriel was diagnosed with autism, “it was a shock,” Rivera says.
Like many children with autism, Gabriel had a significant speech delay. He received speech therapy in Spanish, an official language of the U.S. territory where they lived. He also heard English in his bilingual home, which included his sister, Camilla Colon-Padua, and grandmother, Pilar Sotomayor, an English teacher.
Life changed dramatically after Hurricane Maria damaged Puerto Rico, and wiped out power and other services. “It was very difficult at that time because my son did not understand what was happening,” Rivera says.
A Major Transition
In 2019, the family moved from Puerto Rico to Massachusetts. Rivera, who has a doctorate in clinical psychology, works as a counselor with military veterans. Padua recently published a book in Spanish, “Puntos de Sutura,” about the faith and resilience of a mother with bipolar disorder raising a child with autism.
She manages Gabriel’s therapies and schooling, which is now taking place online due to the COVID-19 pandemic. Gabriel, now 7, struggles to pay attention to online classes, his parents say.
He has Applied Behavior Analysis therapy, an evidence-based autism treatment, every afternoon. The therapy is covered by their insurance, something that was not possible for them in Puerto Rico, Padua says.
Gabriel uses several words in both English and Spanish. When he wants a drink, he will say both “juice” and the Spanish word, “jugo.” He also communicates by gestures, his mother says.
He loves to watch videos of Curious George and Peppa Pig over and over on a mobile phone. He also enjoys playing with toy cars and trucks.
Rivera hopes his son will learn everyday living skills, which can be difficult for many people with autism regardless of where they fall along the spectrum. He would like Gabriel to be able to dress himself, use the bathroom independently, and eventually prepare a meal in the microwave.
Gabriel has a tendency to run or wander from safe spaces, which is common among young children with autism, according to research. So his parents watch him carefully.
Planning Ahead for Adulthood
Rivera and Padua worry about the future, especially because neither of them have siblings to help them. “What is going to happen with my son when we are not here? Will he go to a group home or special housing? Will there be opportunities?” Rivera asks.
“We have been told twice by different professionals that our child may have to be institutionalized,” Padua says. “Those are devastating words to say to parents.” She plans to advocate for housing and resources to help adults with autism live as independently as possible in their communities. “That’s something we would like to work actively on, to tell the world there’s a need for this,” she says.
Genetics and Autism
They have not received any genetic results since joining SPARK about a year ago. They say they have relatives in their extended family who have autism. They wonder whether a genetic change could be involved in Gabriel’s condition.
Changes in genes that contribute to autism may occur for the first time in a child, or they may be inherited from a parent. Padua wonders if the family has an inherited genetic change that might be passed to future generations. “If we know we have a predisposition to autism, knowing that may help my daughter make decisions for herself in the future,” she says.
She encourages parents to seek help if they suspect a delay in their child’s development. “As soon as you have any suspicions or doubts, act fast on it so you can get the proper services as soon as possible. Early intervention has made a difference for Gabriel. And never give up hope because this kid surprises us every day,” she says.
Of course, there’s much more to parenting a child with autism than managing therapies and keeping the child safe, they say. “For the emotional part, I do my own intervention, like giving kisses, hugs, and a lot of love,” Rivera explains.
“This is one of the keys, the love,” he says. “It’s not only the research, it’s not only the theories, the answers, the knowledge. It’s also the love.”
Photo courtesy of Jorge Rivera