Helping My Child With Autism Be The Best He Can Be

When my son was first diagnosed with Autism, I wasn’t sure what that meant. It seemed like a signal to shut up, sit back, and just watch him grow up in his own world. After all, to a person unfamiliar with Autism, the diagnosis seems pretty cut and dry.

My brain conjured up images of Dustin Hoffman screaming when Tom Cruise tried to hug him and other Hollywood-inspired doomsday scenarios. All I could see was a boy who would be devoid of love, affection, or the basic understanding that his family cares for him. Years later, I know that’s not even close to true. Back then, though, it certainly felt that way.

kss.jpgAt the time, most of the experts were trying to decipher his capabilities rather than teaching new ones. It was less about his learning and more about ours. We were seeing what was possible. Did he know who we were? Did he know we were even there? In one particularly deflating moment, a terrible speech therapist remarked, upon my wife and I walking into the room, that, “He didn’t even look up. It’s like he doesn’t even realize you’re here.” That one stung.

Despite that, we still persisted. I wanted to see if he could learn things through repetition and example. I did it with his sister, who isn’t on the spectrum, so I wanted to do the same with him. Even if it didn’t work, there was no harm in trying. What else was there to do?

So, every night at bedtime, I would ask him, in a very serious voice:

Lucas. Who does Daddy love?

Then, I’d take his hand and make him pat himself in the chest. In the squeakiest and cartooniest voice I could muster, I’d screech out.

ME!

I’d laugh and tickle him and do it again. It made me smile and, as time went on, it made him smile too.

For a while, though, it didn’t. In fact, it all seemed pointless. Sometimes he wouldn’t even be looking at me. His gaze would be pointed to the ceiling or the wall. He was a million miles away, but still I’d pat his chest with his hand and laugh. I may have looked silly if someone walked by, but no one ever walked by. Besides, looking silly wasn’t important.  Who did Daddy love? That’s important.

That was many years ago. Today, Lucas is eight and, when I ask who Daddy loves, he looks me in the eye and taps himself in the chest. It’s not something he does occasionally, it’s something he does always. It’s also something he does with conviction. He may not have the words to tell me, but I know he gets the gist of what I’m asking. What started as a throwaway action on my part turned into a parlor trick on his and eventually evolved into the understanding response he gives today. I taught him that. He learned that. We’re both proud.

That was just the start. There have been many other life skills to evolve through this. There was waving hello, using a fork, sitting quietly at a restaurant, and many more impossibilities that eventually became realities. He’s not perfect at all of them and I don’t need him to be. I just need him to try the best he can. It’s important for me, but it’s more important for him.

My son has to be a part of this world. He needs to interact with other people. That doesn’t mean he has to be like other people. If he wants to watch Sesame Street or play with Leapfrog electronic toys when he’s an adult, that’s fine. I want him to be who he is, and no one has the right to judge him for it. He does, however, need to share a planet with people who aren’t like him. He has to know how to respect others, to the best of his ability, and interact in a way that can ensure he will never be wanting for his basic needs. I want people to treat him with kindness and understanding. That requires him to put his best possible foot forward, show that he can respect their world just as they should respect his, and express his basic needs.

Make no mistake, if he’s unable to learn these things, then his life will go on. My son isn’t going to starve in the streets because he can’t ask for a sandwich. His family and loved ones would never allow that. The world will feed him, but it won’t feed him the things he wants. He needs to ask for those. They’ll just give him whatever is accessible. He’ll get what someone else wants him to have.

bpMy son doesn’t want that. I know because a few weeks ago, his new in-home therapist insisted that he use his iPad to request. The entire session was a 45-minute nightmare that saw tantrums and rolling on the floor before the last 15 minutes faded into begrudging button-pushing acceptance. Writing about it made me uncomfortable. Watching it was even worse. It took all the effort I had not to scoop him up and run from the room. Yet, I made him sit there and participate.

That might sound cruel until you realize that, since that day, he has been using his iPad to request pizza and apple juice on a loop. The boy who used to take whatever food you gave him will now put his hand up, bat away a cup of water, and press the buttons to make his robotic voice say, “I Want Apple Juice.” He has done this every day since that less-than-one-hour miserable lesson. Every. Single. Day.

In fact, that confidence has carried over into his non-iPad communication. I’ve come to discover that Lucas like frozen Eggo French Toast Sticks better than their cinnamon toast counterparts. I know because suddenly, he’s pushing away the box of toasts and pointing to the sticks. Because of that, he gets the breakfasts he wants now. For literal years before his one sad in-home iPad lesson, those two boxes (and waffles) were interchangeable. I gave him whichever my hand touched first in the freezer. Now we give him what he wants. Everyone wins.

Don’t get me wrong. If we tried to show him how to use his communication device and he couldn’t figure it out, that would be fine too. We would search for other ways to help him interact, if possible. The goal of getting him to push buttons isn’t to show him off or prove that he’s “smart”. It’s so he can voice his desires the same way other people can and get the most out of his own skills. It’s for him. It’s all for him. It always has been.

I want him to be as independent as possible one day. He might not have his own house or family or car, but that’s OK. The least he can have is his pizza, apple juice, and French toast sticks. I want to help him get those things and more. He knows I do and why. Because he’s who Daddy loves, that’s why.

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2 comments

  1. Love reading your blog, James. Our son, Cash, is 7 years old and is still what I and most would consider non-verbal, though he appears to have a bit more verbal ability for now than does Lucas.

    I’ve been curious, what communications (robot voice!) app does Lucas use for his iPad? We have tried Proloquo2Go with no success at all. Although, he was only 4 when we gave that a go.

    Like

    • Thanks, Robbie. We actually do use Proloquo2Go. We tried it when he was younger and he had no interest. In fact, it wasn’t until a few months ago (after years of having him begrudgingly trying for us) that he started to really pick it up. It can be pretty deep to navigate, so I found that the more comfortable he got with iPad usage, the more he picked it up. We had used PECs for years too, but those can sometimes become overwhelming because of how many you need to have and how easily you can lose them. For now, we use the Proloquo for most of his verbal interactions and I have a single sheet of pictures from his favorite shows (currently) so he can point to the one he’d like me to put on.

      It’s a real wait-and-see process with these devices. What didn’t work yesterday could sometimes work tomorrow. I wish you guys luck with finding the right approach for Cash. It can be frustrating for both the parents and the kids.

      Like

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