"What Did You Do Today?"
“What did you do today, Ryan?” I asked my son as I helped him off the little yellow school bus. His answer was silence, as it had been every day since starting a special education preschool six months before. I had learned that if I asked enough questions, I could tease a few yes or no answers to decode his day, but he would never volunteer information without another round of 20 questions. It was heartbreaking for me, not knowing what was happening inside his head, what he thought and felt. I wanted him to run into the house with his artwork, eager to show me what he had made that day. His two-year-old brother had no problem telling us what he wanted or felt or demanding attention, but Autism meant Ryan was often a mystery to be unpacked.
Until finally, “What did you do today, Ryan?”
“Played.”
That one word, "Played, "stopped me in my tracks. It carried such weight and hope, and it took months to work its way out. Just one word, yet it was a cause for celebration. It was a small victory, but it was a victory nonetheless. It was a sign of progress, a glimpse into Ryan's world that we had longed for.
“What did you play?”
“Sandbox.”
“Who did you play with?”
“Johnny.”
A typical three-year-old has a vocabulary of around 1,000 words, yet those three one-word answers were the longest back-and-forth exchange we’d ever had.
He was in Special Education classes in the public school system and had annual education goals. At first, most of our son’s goals revolved around engaging with others, completing a task with minimal prompts, asking for help, and not eating items that were not food. As he got older, the goals became more educational, but there were always language and social ones.
Gradually, his vocabulary, social awareness, and interest in his peers expanded. His milestones were unique to him. I remember when Ryan, about age seven, was thrilled about being at a mountain cabin and kept running up, interrupting me, saying, “We’re in a cabin, like Abe Lincoln, we’re in a log cabin,” until I finally had to say, “Ryan wait one minute, until I’m done talking.” It was a significant moment for him to demand attention verbally. It also showed that he had been paying attention in 1st grade history.
Or when his younger brothers proudly displayed their Little League baseball uniforms and Ryan said, “Where’s my uniform?” He had never been interested in sports or being on a team, so it was a big deal. We quickly found him a special team, and he proudly wore his uniform onto the field.
Years of speech therapy, social skills, and the passage of time drew out his vocabulary and engagement with the world; He also became aware of his Autism and what that meant for him. I came across a poem he wrote as a Freshman in high school. The assignment was to write about how people are stereotyped. He knew he had Autism, and we talked about what that meant for him and how he lived in the world. It took many questions with one-word responses to bring it together, but he nailed it.
I have Autism, and that makes me different
It does not make me stupid
It does not make me weird
Because I have Autism, I have Superpowers
I can memorize TV and movie lines
I can remember lots of things like the name of every kid at my Middle School
I have great eyesight
I can tell the difference between a Cessna and a Beechcraft airplane when they are high in the sky.
I can also tell the difference just by hearing the engine.
Autism makes it hard for me to keep track of things like homework
It makes it hard for me to talk to other kids, and sometimes I don’t know what to say
I am a regular guy who wants to make friends
I am just a regular guy who has Autism
I was simultaneously proud and heartbroken. He just wanted to be a regular guy, to participate in life like every other kid at his high school. And he did to a degree. Joining the marching band, attending dances with friends, turning in homework late, and being frustrated by remote learning. His friends and social life were school-based and rarely extended beyond the school day.
When he graduated from High School, his social structure suddenly fell apart. His school friends had been just that—school friends. He had rarely seen them outside of school, and now everyone had moved on to college or a job. When his younger brother left for college, it was especially hard for him. He was the big brother, after all. It broke my heart that I could not magically fix this.
We worked on his independent living skills, such as cooking, laundry, and grocery shopping. You assume your kids will figure these out on their own when they go off to college, get a job, and move out of the house. With Ryan, we needed to frontload his skills in the hopes of him living as independently as possible.
He worked a few hours a week at a local pet store, joined an aviation club (airplanes had always been his passion), and joined a local day program that was both recreational and taught life skills. He learned to take the BART train and bus to get to and from the program and made new friends.
And then we discovered Wayfinders, a wonderful program designed to help persons with Developmental Disabilities learn independent living skills. The program is part of Fresno State University, and the participants live with roommates in apartments near campus. “Coaches” help guide them toward navigating the world independently. The program includes grocery shopping, cooking, cleaning, managing a calendar, and using public transportation.
He worked hard to get into the program and prove he had enough skills to participate and succeed. The day we loaded the car to take him off the “college,” he was beaming. His pride at being a Fresno State Bulldog is priceless.
It is easy to forget how far our kids have come; we see them here and now. Of course, if you have a special needs child, you can mark their progress through annual education goals. It’s amazing to look back at those first goals and see where he is now.
He was recently home on spring break, and on his last day, I asked him to pull the sheets off his bed so we could wash them. “There weren't any sheets on my bed, and also I didn’t have a pillow,” was his response. I did a mental eye roll at him, not asking for help, which was a lifelong challenge. And then it occurred to me that perhaps he was acting like a typical 22-year-old, not bothered by sleeping on a mattress pad, under a bedspread with a stuffed animal for a pillow. Like the rest of us, he is still a work in progress.
Take your kids’ victories where you can and celebrate the small wins. I’ve learned not to say, “He’ll never …” because chances are, he’ll get there eventually. It may have taken 19 years, but today, the answer to my question is more than three words and contains so much normality and everydayness that it makes my heart sing. What did you do today, Ryan?
Regina Stoops is an award-winning storyteller, comedian, writer, producer, MS Warrior, and Autism Mom living with her wife and three kids in the San Francisco Bay Area.