The First 5 Center worked with Orange County mother Gabriela Velasco to write about the difficulties her family faced in getting an autism diagnosis for her son.
My son Jair became a teenager this week, and I have been thinking back on his childhood often. Like most parents who face this milestone, I look forward to my son's future with excitement. Unlike most parents, I can recall many moments from my son’s early childhood that bring me to tears easily—and I don’t mean tears of joy.
I had a difficult pregnancy—eight months of bed rest followed by birth at 36 weeks. Jair cried a lot as a newborn, and couldn’t latch or suck for breastfeeding. The breastfeeding consultant told me to give up on it, but I refused to listen. It was one of many times I chose to believe in my son despite what others told me. In the end, he breastfed for four months.
Shortly after Jair and I went home from the hospital, we resumed having a home visitor come to the house to coach us on parenting, as she had since the start of my pregnancy. She noticed Jair had low muscle tone in his legs and feeding issues. He was also a little behind on walking and talking. She pushed me to ask my pediatrician about it, but he dismissed my concerns. I called the regional center and told them how my son would bite or bang his head when mad, and they chalked it up to “bad behavior.”
But I knew something was wrong, so I called Orange County’s Help Me Grow’s resource line for parents of young children. They really listened, and helped me get an evaluation. At 18 months, I was told my son was “globally delayed” in speech and fine motor and gross motor skills. I was devastated. I wanted just one problem to solve, and it was painful to see that Jair had so many. The evaluator told us our son also would probably need glasses, and I remember thinking, “The only thing healthy about him is going to be his teeth.”
My son started getting speech, occupational, and physical therapy through early intervention. But we still didn’t have an explanation for his delays, and my Help Me Grow coordinator was concerned. At 25 months, she encouraged me to take Jair to UC Irvine’s Center for Autism and Neurodevelopmental Disorders for evaluation, where he was finally diagnosed with autism—nearly two years after the first signs of trouble. He was fast-tracked to behavior therapy and showed big improvements quickly.
I’m grateful for the help he got.
But I’m also frustrated that it took so long to get him assessed. Again and again, my concerns were dismissed by professionals. If it weren’t for one person at Help Me Grow, my son might never have come as far as he has, entering adolescence with friends and hobbies and dreams of being an engineer.
All little kids have the right to great care, and to experiences that will build their brains so they can learn and thrive—no matter their income, race, or where they live. It took one person to make the difference for my son—one person who took his mother seriously. At the time I felt powerless; I knew nothing about autism or how to get services for my son. But I knew I had to fight for Jair’s well-being.
We need all our doctors, nurses, social workers, child care workers, and early intervention specialists to be informed and vigilant. We need parents to feel like they can persist when something in their gut tells them to. We need a community with its eyes and hearts open for opportunities to be helpful. We need everyone to play a part.
Gabriela Velasco is a Mommy and Me educator, and serves with her husband Pedro on the Latino Family Advisory Committee for UC Irvine’s Center for Autism and Neurodevelopmental Disorders. She and her family live in Orange, CA.