I’m going to be honest about something that is rarely said in blogs like this. There are some aspects to raising a non-verbal child that are much easier than people realize.
Lucas is cooler than the other side of a frozen pillow. While he definitely has moments of sensitivity or sensory overload, he has many unexpectedly simple parenting tasks too. He will put up with so much and go about his business as if nothing happened. It started when he was little and was almost immediately noticeable.
Serve him food and he’ll eat it. Pizza, pasta, canned yams, and other assorted meals were all gobbled up without an issue. If the sound on his iPad was too low, he’d simply hold it up to his ear or watch it anyway. Put him in a corny outfit and he’ll proudly walk around wearing it. Put him in nothing at all and he’ll walk down the street with his business out. He doesn’t care. Other side of the frozen pillow, this kid. My boy.
Let’s amend that first statement though. There are some aspects to raising a non-verbal child that are much easier…if you don’t you give them the outlet to tell you what they want.
Had speech devices or even the ability to choose never been introduced, Lucas would still be allowing me to make all his decisions for him. Before he had the communication iPad, I had to guess his favorite foods. Now, I know he loves pizza, quesadillas, and Pirate Booty…all with a side of orange juice. Ew. Who would have guessed that?
Not me. That’s what makes asking him so important. The early days of “eat whatever you get” are over. Now, he will take the back of his hand and dismissively shoo away a box of waffles or pizza rolls when he doesn’t want it. He has choices now. He went from eager beaver to choosy diva. I made the effort to find his outlet. I gave those choices to him. It was a big step towards making him whole.
Even that iPad volume issue is one that is being corrected. For so long, I thought he didn’t care. I’d see him watching Sesame Street with the sound set to one. Everyone around him was watching TV on full blast or talking across the room. There was no way he could hear it and he didn’t know he could change it or how to ask for help yet. There he was, sitting quietly and studying Sesame Street like a silent movie. I was the one who first broached the subject with him.
Hey. You want it louder?
He didn’t look up. I tapped him and then tapped my ear.
Louder? You can’t hear it?
At this point, I tried to take the device from him so I could raise the volume and it became a struggle. He grasped the handle and yanked back as if I was taking away his firstborn baby. When I finally wrestled it away (I’m a full-grown freakin’ man. I ain’t losing no tug of war to a then-eight-year-old), I made it an appropriate volume.
His face lit up and he looked at me as if I was magical. Since that day, he brings his iPad to me if the sound is too low. Sometimes he requests it with his AAC talking device. Sometimes he hands it to me and I ask him by touching my ear. It’s the way he wants it and he gets it. On this subject, we no longer have a failure to communicate.
Sounds like victory, right? In many ways, it is. There are, however, a world of other things that we still need to work out. Many abstract ideas, hopes, and desires still need my son to realize he can attain them through communication.
While most kids will fake their way out of school with fugazi illnesses, my kid does the opposite. He will go to school with Ebola if we let him. Lucas doesn’t complain and doesn’t see staying home as an option. He will get on the school bus and walk into class if he thinks that’s what is expected. It would be an easygoing response that a lesser parent would take advantage of.
That breaks my heart. So I usually err too far on the side of concern. I’ve kept him home on days only to turn to him at 10AM and say, “Yeah. You could have gone to school today, dude.”
Yet, there he is, hopping around, clapping, and playing on his iPad. By the same token, there have been days where he seems totally fine, only to be returned to me for excessive coughing or because “he doesn’t seem himself today.” That last one feels like a bit of a work on the nurse’s part, but still, I sign him out.
We don’t even have a traditional way of knowing he’s ready for bed. Lucas has four different ways to make you aware that he’s ready to call it a night. Two happen when it’s too late and the other two require advanced knowledge.
He might crawl into bed himself, tuck himself in, and go to sleep. This happens when people are visiting. Suddenly, someone will say, “Where’s Lucas?” I’ll find him all bundled up, go “aww”, and take a picture. The other option that happens when it’s too late is when he simply passes out…anywhere. Whether a restaurant or a car ride or even on a Disney World ride – seriously.
The two warning signs are a bit trickier to catch. The first tell of extreme exhaustion comes when he’s laughing uncontrollably. Most people would find it adorable and laugh along, but that usually leads to agitation. As his dad, I know it’s bedtime.
When it’s not laughing, it’s tapping. I call it “tapping out for the night.” Like an MMA fighter in a rear naked choke, my boy will begin slapping his hand repeatedly into the ground. That’s the unspoken way of saying, “Stick a pillow under me. I’m done.”
Most people wouldn’t be aware of these signs and, if I’m honest, I don’t know if he is either. I wonder if he has the capability to understand exhaustion or being too sick for school. As his dad, I point out these feelings when I spot them coming from him. I try to make him see and I try to make him understand. I try to make him realize that he’s supposed to feel it and communicate it to me.
After all, there was a time when I thought the same thing about food and iPad volume. Today, they are things he can express. Will there come a time he can do the same for bedtime and skipping school? Maybe. There’s only one way to find out: to work on them. That’s how I learn all the things he can and cannot do…yet.
Would life be easier if I just dictated these things to him? Sure. But I didn’t have a kid to make things easier for me. I had a kid to guide him into the world. I want my son to be whole and I will do everything I can to make that possible, even if it makes my life a little more difficult in the process. I’m a parent. It’s my job.