How "not right now, but later" became my autism mantra

September 11, 2018

This blog post was written by Kathy Hooven, mother to a son with autism. You can read more about Kathy and her family on her blog, "The AWEnesty of Autism." You can also follow her on Facebook.

kathy and ryan

If only I heard those words ten years ago. If only I believed those words ten years ago. If only I tattooed those words backwards on my forehead ten years ago so every time I looked in the mirror those words 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.

I heard those words loud and clear just a few days ago when Ryan got invited to a Super Bowl Party.

His first invite by a classmate in almost ten years. To say Ryan was ecstatic is an enormous understatement. He had to fight back the tears when he shoved the invitation in my face! It doesn't matter that when I asked who the invitation was from that Ryan momentarily forget the lovely young girl's name (facial recognition is something Ryan struggles with), what mattered most was that this nice (momentarily nameless) girl handed an invitation to him. Yes, 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, 125 pound, 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 to which Ryan often refused.

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 once again 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. Because AWEnestly, that is pretty much how this autism journey has been going.

"Not right now, but, later" could truly have been the mantra, the theme, the words to live by for my son. As I watched him happily bounce out of my bedroom a few short nights ago while humming the latest Minecraft music buzzing around in his head, I realized, he has been "saying" those very words for years. I just wasn't listening.

"Now it's time to learn to use the potty" I shouted, screamed, begged and bribed. "Not right now, but, later" was what Ryan was trying to tell me all those years ago when "now" was not the time for him. "Now" his brain was not quite ready to understand the signals his body was telling him which is why it took him longer to toilet train than most kids his age. "Later" worried me though because it felt way past "now", yet, when he was ready, "later" came, just like he knew it would.

"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 struggled, became frustrated and chucked the book past my head. "Not right now, but, later", because it didn't matter how cool the book was with the fake shoe on the front or how much he idolized his brother and all his cool abilities, Ryan's fine motor skills weren't on board with all the other kindergartners, 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 non-stop at the time here______). I like Ryan's voice soooo....much better", I cajoled. Ryan went about his latest script in his latest voice as if he hadn't heard my request time and time again. The thing is, that WAS Ryan's voice. He was communicating with me in the only way he knew how and if I would have heard "Not right now, but, later", it would 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 because I didn't have to listen to 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 loud in his ears. The pieces of hair falling on his neck 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 were 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.

"Now that you are older, maybe you should wear clothes like a lot of the other middle schoolers", I tried (repeatedly) as Ryan walked out the door in silky track pants that I have such a hard time finding now that he wear men's size pants (apparently men do not wear satin pants to work out in these days). 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 from the mall, other words came that I was NOT expecting, beautiful words of self-awareness. "I wish my body wasn't such an 'arsehole' 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 dumbfounded, 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, a request for khaki pants and a declaration that his "brain is stronger" now and 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 that one day he forgives me and understand that "not right now, but, later" has rung true on this journey for me as well.

Better late(r) than never, right?