Difficult diagnoses, times two: Mom of twins with autism shares experiences

September 8, 2020 | UHCL Staff

When her twin sons were about a year old, Lydia Rios knew something did not seem right. They had been reaching their developmental milestones for the first several months of their lives, but then they suddenly stopped reacting, making eye contact and interacting with her as they had before. When they were about three years old, her twins were diagnosed with autism.

Rios will share her experiences as the kickoff presenter in the Autism Speakers Series from University of Houston-Clear Lake’s Center for Autism and Developmental Disorders. Her talk, titled “Turning Grief into Advocacy: My Journey with Twins on the Spectrum” will take place via Zoom on Saturday, Sept. 19 at 10 a.m. in Spanish, and at 11:30 a.m. in English.

She is also the mother of two other children and in her presentation, she shares her experiences as a domestic abuse survivor. With the help of prescribed medication, she is coping with post-traumatic stress disorder and depression.

“I have learned that parents and professionals must work together,” Rios said. “The people who work with special needs children have chosen that profession. But we parents did not ask for children with special needs. You must train and educate yourself. You don’t learn what you need to know about this unless you’ve gone to school for this. You’ll learn that every part of your life impacts your children’s health and therapy.”

She recalls being told that her sons would “grow out of it because they’re boys,” but she said that parents should follow their instincts. “If you feel it in your gut that something is wrong, then you should ask for help,” she said.

As she struggled to find help for her sons, Rios said she was also suffering at home. “I shouldn’t be alive right now,” she said. “I was living with domestic violence. I began to think my boys would be better off without me. I felt I had no purpose.”

Rios found clarity and purpose when she realized that she could not stop living her own life to “fix” or find a cure for her children. “A lot of parents put their lives on hold and their only focus is their child, and they forget their child’s siblings and even themselves,” she said. “So I began running in 2017. I had blocked a lot of things that happened, and I was just surviving. Running helped me turn everything around. It’s something I do for myself.”

Now an ultramarathoner, Rios said that she tells parents who are in her position not to put their own dreams on hold. “I’m the only woman to complete a five-day ultramarathoning event where I ran 200 miles in the Franklin Mountains in El Paso,” she said. “In the meantime, I learned one of my sons is diabetic. I thought, how can I run when I have to be with him all the time? But learn to advocate for yourself. You can do it. Don’t put barriers on your dreams. Today, I’m a different person.”

She said she hopes those who attend her presentation take away a solid piece of advice: “Don’t always try to help or cure your child,” she said. “You don’t need to be heartbroken over their disabilities. There is a community of people with special needs. They’re out there for you.”

Learn more about joining other upcoming virtual presentations at CADD online.