I used to make deals with my son while getting him ready for bed. I’d wriggle him into his blanket sleeper and, as he whined, offer him one chance to achieve life without bedtime.
Just say it, Lucas. Say “No! No Sleep!” You say it. “No Sleep!” Say it and you never have to sleep again. Ever. That’s it. “No Sleep.” Seriously. Go for it. Come on.
He wouldn’t. I’d tickle him as if he was only refusing as a way to tease me and, as I tucked him in, remind him of what his words could get him.
Seriously, kid. You say it and I’ll do it. Say “Daddy, beat up the mailman.” I’d have to do it. I’d just punch the mailman. Be like, “Special delivery. Bam! Sorry. Lucas said.” Anything. You have no idea how much power you have.
It was our on-going joke. I’d invent some crazy scenario that he could request and assure him it would be done. Then I’d tickle him, he’d laugh, and that was that.
Of course, he never said any of them back to me. For one, the mailman was never ambushed. Second, Lucas is non-verbal and, as of today at eight years old, doesn’t vocalize his requests.
I hate to say it, but I had always assumed that was going to be it for our one-sided conversations. Teachers would assure us that he understood so much and just needed ways to show it. We searched for any tool to make that happen.
The easiest route to go with at first was hand signs. Most parents use physical movements with their babies, regardless of whether or not they are on the Autism spectrum. We do them instinctively. You ask if they want a bottle and mimic bringing a bottle to your face. You ask if they want to go bye-bye and you can’t help but wave bye-bye.
So, signs were really the first steps we took. I call it our umpire language. Lucas and I can communicate about basic needs as if I’m the third base coach. From afar, it might look like I’m doing the Macarena. To him, I’m asking if he is ready to brush his teeth before going to bed.
Those hand signals, especially personalized made-up ones, can only take a conversation so far. Soon, at the suggestion of his teachers, we introduced PECS, which stands for Picture Exchange Communication System. It sounds smart that I knew that, but I just Googled it. We’ve used it for like six years and I just learned what it meant today.
The name explains it well. There are pictures and he hands them to you to show what he wants. When he was around three, I made one out of a whiteboard and mounted magnetized pictures of his favorite shows and food. For a while, that became the way he asked for Raffi. Repeatedly. For years.
Sarcasm aside, it was pretty amazing. His use of hand motions, while consistent, was always crude, at best. These pictures were clear indicators what he wanted. It would make me smile to know that my son wasn’t eating chips because I put them in his face. He was eating chips because he wanted them. It made me wonder how many times he had craved a pack of Pringles in the past, only to be served some whack yogurt cup or something. Although his choices were very limited, he had choices. I knew it was a big deal.
Then came AAC and, honestly, everything changed.
AAC is the abbreviation for “augmentative and alternative communication” device. Much like PECS, I just learned that from Google. We usually just call it his “School iPad.” It’s the one he uses to say, well, anything.
He has a detailed menu with many subcategories ranging from food to toys to people. With the push a few buttons, he can ask for anything complete with a mechanical voice. If it’s not an available choice, we can add it in within seconds. It’s as if someone heard my bargains with him as a baby and gave him a device to deliver that mailman the beating he deserves.
Of course, a lot of the onus is on us, his family, to push its use. When I give him a dinner of pasta, I have to make sure I find the button for “pasta”. I show him, he appeases me, and pushes the button himself. Then he scarfs it down like a stray dog in the desert.
My use of the school iPad had always been spotty at best. Aside from a few moments here and there, I had never observed him using it for much other than to ask for his “home iPad.” That’s the one loaded with TV shows, frantic apps, and other activities to send him stimming for hours. It seemed like the school iPad only existed to ask for its homely counterpart. So, we used it minimally.
Within the last few weeks, though, that all began to change. It really started when I brought him in for dinner one night. As he hopped into his seat, I carried him over his plate of chicken nuggets and punched “Chicken Nuggets” into his AAC. The robotic voice repeated back “Chick-en Nug-gets.”
He made a disgusted face and pressed the delete key. Then, he punched in a request of his own.
I thought he was probably just pushing buttons. He loves chicken nuggets. I held the plate out to him just to double check.
You sure, buddy? Chicken nuggets. No?
With the same repulsed expression, he put his hand out and, delicately yet pompously, shooed them away. Then he tapped the screen again.
I jumped into action, mailman-punching style.
One sandwich! Coming up!
I ran to the fridge and began piling cheese and turkey onto bread. He got up from his seat and came by to check that I was following his orders. He does a tip toe walk-by that I refer to as “my little supervisor.” Content that his task was being completed, Mr. Sandwich returned to his seat and, from behind, I heard the robot voice call out once more.
Yes! I poured that kid a giant cup of Motts for Tots and ran it to him with the biggest hug I could muster without squashing him. I can’t really describe the look on his face, but it wasn’t disgusted anymore. He looked proud. I know I was.
This is what I asked him for all those years ago. I never thought it would be possible and never imagined it would be like this. But it is and I love him for all the effort he put in to make it happen. This kid blows me away.
Communication comes in many forms. My son may have never said a word to me, but we have spoken in so many more ways than that. He never has to verbalize a thing. I will always help with anything he asks for, no matter what method he uses to do so.
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