In Awe of Autism
I’m no expert, or doctor on autism – I’m “just a Mom” – as one person pointed out once… But I am the mother to four children (our oldest three, all sons, were diagnosed with autism as toddlers).
As the Mom to Tony (20), Frankie (18) and Ricky (12), I’ve been there for all of it. In their early years, I was the one sitting on the floor in their therapy sessions - trying to absorb as much as I could from how a speech therapist would play and interact with them… To watching an occupational therapist and seeing what techniques they would use to desensitize them from the sounds and sights of getting a haircut.
I learned to follow their lead. To not talk as much. To find creative ways to get them motivated to communicate on their own. To be a voice for them when needed, but to mostly help them discover their strengths and then run with it.
Tony, Frankie and Ricky all have perfect pitch. That means they can hear a song and know exactly what notes are being played. It’s a rare skill most musicians wish they had that supposedly only exists in one of every 10,000 people. They don’t think much of it - and just carry on studying piano, trumpet, tuba and cello.
Tony has sung at Carnegie Hall - a place he’s about to return to this summer to perform on his cello. He’s met Neil deGrasse Tyson because he was invited to sing the national anthem at a prestigious awards ceremony. He can solve the Rubik’s Cube in less than a minute. He was a National Merit Finalist (almost scoring a perfect SAT score - he hit 1550 on a day when he had the flu). On paper, his accomplishments are hard to cram into a one-page resume, but in person - he’s the most polite young man. He never brags. He’s the most modest person you’ll ever meet.
Frankie works at Six Flags Fiesta Texas and loves what he does. He often works double-shifts on the weekends alongside his band friends from high school. He’s the most loyal and dedicated employee and is incredibly self-driven. He establishes goals for himself and makes detailed lists of things he needs for each day to be successful. Frankie is what you could call the master of executive functioning skills… Those skills many of us who aren’t on the autism spectrum struggle with. The planning, the preparing, the executing… Frankie is on top of everything he sets out to do.
Ricky is very much like Tony when it comes to being bright, but as people say, “If you’ve met one person with autism, you’ve met ‘one’ person with autism.” No two people are the same. Ricky sees the world in a very creative way and doesn’t see obstacles. Last year he authored a petition to create Jackson Mohr Day in memory of his friend’s big brother who sadly passed away due to Sudden Cardiac Death. He came up with the idea as he was writing a sympathy card to his classmate, Bianca. At just 11 years old, his idea was embraced by thousands and San Antonio Mayor Ron Nirenberg approved it for April 22. It’s one of the best ideas Ricky has ever had. Aside from having a huge heart, Ricky also enjoys playing competitive Scrabble and competed in Malaysia right before the pandemic. Next month, he’s headed to Washington, D.C. to compete in the North American School Scrabble Championship where he came in third place in 2019.
Had you told me when Tony was only 2 years old and recently diagnosed that he would go on to do all of the things mentioned above, I would never have believed it… The same goes for Frankie and Ricky. All of these boys of ours have surprised us and continue to do so every day.
I remember those first days of learning about what autism was and being absolutely gutted when Frankie was diagnosed only 6 months after Tony was - and at a younger age, too (he was only 18 months old). But I found a pack of parents where we were living in South Florida who were all going through a similar journey. Our circles overlapped between the Autism Society of Broward County, the amazing Baudhuin Preschool on the campus of Nova Southeastern University that serves kids with autism and in numerous therapy waiting rooms and events and conferences.
We got second and third opinions from doctors, ran through testing to make sure there was nothing else medically going on like seizures… So much debt, so much uncertainty, but all along the way - we relied on the good advice from others who were more knowledgeable, those who had experience being in our shoes… and it was all so positive and similar. We found an advocate, learned as much as we could, tried all the things we could and learned to never ever give up.
A Mom I met at an Autism Society committee meeting was listening to me talk about how Tony could go up to any piano (a toy piano, a Little Tykes piano, any keyboard) and play familiar tunes. He had been doing that since he was 2. She told me he should be in piano lessons, not just music therapy - but actual piano lessons. I couldn’t believe it. But I’m so glad I listened. Tony started private lessons while he was still 3 and in diapers. He became potty trained by 4 and is currently playing piano at Trinity University on a music scholarship.
Frankie had so much difficulty trying to speak clearly in his early years… He always had something to say, but I was basically his translator. I worked with one of his therapists to help teach him how to pair signs with verbal approximations. He would say, “pa, pa, pa” to communicate that he wanted to play the piano while acting like he was playing the piano… He was so into this form of communication. We did everything this way to increase his language skills. He would sign “all done” and “more” and it exploded. By 3, he was recommended to be placed in one of two integrated classrooms at his preschool (meaning they had children without disabilities) often reserved for 5-year-olds with autism who had great communication skills. It was an incredibly special moment since Frankie was still so young - a reminder of how far he had come so fast.
Ricky, like both of his older brothers, was also a late talker. He went on to win his school’s spelling bee and be the runner-up this past year. He has a way with words, even if those words were hard for him at first. His favorite book has always been any dictionary he could get his hands on. To see him now play Scrabble in several different languages is fascinating. He’s not limited at all… He has a thirst for knowledge and has gone through detailed phases of absorbing whatever he can about Roman numerals or geography. He loves to plan trips and he’s been through a lot medically lately and he’s become a great patient. He can tolerate things that used to be so difficult for him (shots, getting blood drawn, dental cleanings, hair cuts, etc.).
All this to say, I’ve seen firsthand how things can change… Things can turn out better than you might ever think. I can see all three of our sons going to college (one already is half way done, the second will start this fall) and I can see them getting married, too… Those are things I never believed were possible in the beginning. If I could go back in time and give myself a pep talk, it would be to just look up more and believe. To have confidence in a good outcome. Know that leaning on others really does help and you’re absolutely not alone. Also, everyone’s autism journey is different and special and inspiring. And as much as others have pointed out that I’ve helped my sons to be where they are - I’d say, they’ve taught me to never underestimate anyone. We all have challenges, and doing what you can, where you are with what you have is all you can do. I also treasure as much of it as I can daily because if you really consider it, there is so much to be in awe of.
Erin Rodriguez lives in San Antonio with husband Guillermo and their 4 children. She is a producer for KENS-5 CBS TV.
