The 4 Words From My Son With Autism That Have Saved Me From Worry


“Not now, but later.”

If only I heard those words 10 years ago. If only I believed those words 10 years ago. If only I tattooed those words backwards on my forehead 10 years ago so every time I looked in the mirror they would not only have hidden my deepening frown line, they would have hidden the fear in my heart from the only person who saw it: me.

But I didn’t, because I wanted “now.” “Later” felt too late.

super bowl sign

I heard those words loud and clear just a week ago when Ryan got invited to a Super Bowl party, his first invite by a classmate in almost 10 years. To say Ryan was ecstatic is an enormous understatement. He was fighting back tears when he shoved the invitation in my face! What mattered most was this nice girl handed an invitation to him.

On the Sunday night before the big party, Ryan jumped up on my bed and reminded me where he would be “seven nights from tonight.” Then it was my turn to fight back the tears. My beautiful 14-year-old son looked at me, somewhat sheepishly, and asked if I would help him “practice” some things he could talk about with the party guests. I was flabbergasted. For years we have tried to role play, “practice” and rehearse various conversations, what-if scenarios and what-to-expect moments, which Ryan often refused to do. However, on this night he said, “I don’t know what to expect at a Super Bowl party, and I want to be prepared.”

After I recovered from the shock and awe that this kid bestows upon me with increasing regularity, I told him there was nothing I would rather do. He then jumped off my bed, bounced away and shouted, “Not now, but later.” And there it was. Such a simple concept in four short words — four words that could have saved me such worry and heartache had I only trusted those words for the past decade, had I only trusted him.

“Not right now, but later” could truly have been the mantra, the theme, the words to live by for our journey. As I watched him happily bounce out of my bedroom a few short nights ago while humming the latest Minecraft music, I realized he has been “saying” those very words for years. I just wasn’t listening.

“Now, I want you to learn to tie your shoes so you are ready for kindergarten,” right after we read this book, practice with this pretend shoe in the book, and after your big brother Kyle shows you how he does it. Ryan had a difficult time and became frustrated. “Not right now, but later,” because it didn’t matter how cool the book with the fake shoe on the front was or how much he idolized his brother, Ryan’s fine motor skills were still developing, so “now” was not the time for shoe-tying (or shirt-buttoning). “Later” came, later.

“Hey buddy, now I want to hear Ryan talk instead of [insert any character on TV he was scripting nonstop at the time]. I like Ryan’s voice so much better,” I cajoled. Ryan went about his latest script in his latest voice as if he hadn’t heard my request. The thing is, that was Ryan’s voice. He was communicating with me in his own way, and if I would have heard “Not right now, but later,” it may have sounded remarkably like “Dora the Explorer,” but I wasn’t listening. “Now” I do hear Ryan’s voice, along with the latest Minecraft YouTuber he is obsessed with, and no matter who I hear, no matter what is said, I listen.

“Wow! I can barely see your eyes because your hair is so long. We have to go for a haircut now,” I whispered in his ear while he was almost asleep so I could live with myself knowing I told him, but hoping and praying he didn’t really hear me so I wouldn’t have to hear the cries, the worries and the fight to get him in the car until “now” actually meant now. The tears, the cries, the heartbreaking “no, no, no” with every piece of hair that floated to the ground was Ryan’s way of telling me “Not right now, but later.” The snip, snip, snip of the scissors was likely loud in his ears. The pieces of hair falling on his neck may have felt like shards of glasses poking in his skin. The different comb, the chair that lifted up and spun around, the numerous conversations happening in the salon all may have been too much for his overloaded sensory system. “Not right now, but later.” And as always, “later” came, with Ryan flopping in the salon chair and barking, “Just give me the usual,” because now he is prepared. Now he knows what to expect. Now he is ready.

boys shirts and pants

“Now that you are older, maybe you should wear clothes like a lot of the other middle schoolers,” I tried as Ryan walked out the door in silky track pants that I have such a hard time finding now that he wears men’s sizes. The same clothes day in and day out was Ryan’s way of telling me, “Not right now, but later,” because those clothes made him feel comfortable and the predictability of how those clothes felt on his body was one thing he could count on not to change throughout his day. Then one day after a shopping trip at the mall, other words came that I was not expecting, beautiful words of self-awareness. “I wish my body wasn’t such an a*sehole and I could wear different things. I really want to, but my body won’t let me. My brain is highly connected to my sensory system, more than it is for my friends.” I was speechless but able to recover enough to take in this beautiful moment and remind Ryan of all the things that came “later” for him, when his body was ready.

And just two weeks later, when he felt his body was ready, came a request for khaki pants because he was ready to try them. “Later” came today as he walked into school wearing American Eagle khaki pants and a brand new Hollister shirt. “Not right now, but later,” on his terms, in his way, when he was ready, not me. And that is exactly how it has been all along and exactly how it should always be.

“Not right now, but later” has proven true time and time again. “Now” was what I needed, what I wanted, at a time I thought it should be happening. “Later” was what my boy needed, what he wanted and what he was telling me all along. Ryan may have never said those exact words to me until just a few days ago, but he has been telling me for years. I just hate that it took years for me to hear him, to understand him and to respect his time frame. I hope one day he forgives me and understands that “not right now, but later” has rung true on this journey for me as well.

Follow this journey on The AWEnesty of Autism.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

TOPICS
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

12-Year-Old Creates Award-Winning App for Sister With Autism

Eashana Subramanian’s sister Meghana has autism, and after witnessing firsthand some of the challenges their parents faced while trying to organize Meghana’s daily activities, Eashana wanted to do something to help. The 12-year-old teamed up with students at the Montgomery County Adventure in Science Club in Maryland and developed the AutBuddy app, which enables children on [...]

Police Department Enacts Changes After Fatal Shooting of Autistic Man

Police in Mesa, Arizona, are taking steps to better protect people with cognitive disabilities and/or mental illness in the wake of the death of a man with autism. On Friday, Feb. 12, Police Chief John Meza announced the creation of a full-time crisis-response team and a “mental health advisory board” which will assist the police [...]

I Used to be Nonverbal. 16 Years Later, I Was a Varsity Basketball Captain.

One of the first role models I had in my life was Magic Johnson. As early as 3, I can remember watching him play with the Lakers and being completely transfixed by his play-making ability. People like Magic fascinated me and developed my interest in basketball. Today, I can say basketball has helped me progress as a person on the [...]

How My Autism is an Advantage

Hello everyone, I’m back with a new video for you. Today, I want to talk about how my autism gave me an advantage in my life. What’s one time autism has been an advantage in your life? Share in the comments below! If you have any ideas for videos you’d like to see, please contact me [...]