Love in the Time of Autism

If you have a child that is typically developing, a child that does not have a social pragmatic disorder, a child that doesn’t have a speech and language delay……..how do you know they love you? I bet they tell you. I bet they show you in their craving of social engagement with you. I’m sure you see it in tiny gestures their big hearts make. So, as a parent of a child with Autism- a child who tries but is largely nonverbal, a child who’s social skills are severely impaired….a child who does not yet know empathy….how do I know he loves me? It’s there and I’ll be glad to tell you how I know. But first, let me tell you how I earned it.

Biology and bloodlines do not equate a child will automatically love someone. A child’s love is earned by individuals who provide stability, security, and comfort. By making a child feel safe, confident, and protected, you have put yourself on the right track of earning their adoring love and affection. That does not simply mean changing diapers and filling milk cups and ensuring they don’t run out into the middle of traffic will put you in an affectionate social standing with a little one. You have to engage. There are so many people I interact with on a daily basis that meet a basic need I have but that I don’t have a social rapport with….we don’t engage about anything other than a superficial exchange….thus, I have no love for them. I don’t dislike them, but I certainly don’t love them or miss them when they’re not there. You have to engage with a child to earn their genuine love and trust. You have to do things you don’t want to do when you don’t want to do them and forget that you’re tired or that you don’t feel well or you’d rather binge watch Netflix from the couch and engage with them. It takes time, effort, patience, and generally a few extra doses of caffeine throughout the day.

Now let me tell you about those things with a child with Autism. They take about a million times more time, effort, patience, and multiple espresso shots chased by a Red Bull to accomplish. Caleb does not typically seek us out to engage with unless he needs something. Thus, we have to make a conscious effort to stop what we’re doing, sit on the floor with him, and initiate an interest in what he’s doing. Caleb also had to be taught social games and exchanges. He did not instinctively know what to do with a ball when it was rolled to him. It took multiple adults and weeks of hand over hand for us to roll a ball back and forth to each other. That’s just rolling a ball, ya’ll. We got Candyland this weekend for his first board game….I’ll keep you updated how long it takes for us to understand the premise of that one. Do you know the patience that it takes to tell your child “I love you” literally hundreds of times and only hear it back in reciprocation about once every 50 attempts? If you ever do? Do you also know how sweet it is if you’re lucky enough to hear those sweet words uttered, no matter how apraxic the sounds in them may be?

The time, effort, and patience that we have spent the last almost 4 years investing in him have earned us cuddles, face squishes, ear flaps, the sharing of a cookie, an early morning crawl into bed, and lately, being invited to snuggle under a shared blanket. These are the ways my son lets me know he loves me.

While my relationship with my son grows stronger, I’m also noticing that distance is growing between him and other people he encounters. And I also know that this strain exists because he has Autism. It takes a lot more work to engage with him because initiating engagement, as well as maintaining it, doesn’t come naturally to him always. It’s harder to play with him because he doesn’t always play in typical ways. You can’t just ask him what he thinks about something because he can’t respond. What’s happening is that the extra time, effort, and patience involved with simply sometimes just being in his presence isn’t always something other people are willing to invest in him. And he’s beginning to become the odd man out sometimes.

There’s nothing that I can do to force anyone else to want to spend an hour on the floor with him even if it means that hour is silent and you group blocks according to color and then make a line of them descending in order by size and shape. I can’t force anyone off a couch and out of a patio chair and into his face and life, earning all the love this little boy has to give.  I can ensure, however, that my child is only put into situations where he is wanted.

I had a decent string of boyfriends in college and all of those relationships fizzled out for one trivial reason or another. But what I didn’t realize until recently is that despite that, I’ve never really experienced true heartbreak. Because what happened recently is that I saw my child treated negatively because of something he was born with that no one could help. And that is what it feels like to have your heart broken.

It was a difficult week as the parent of a child with special needs. But I hope that as a new week begins tomorrow, I can be a better role model for my son. I hope that he is never made to feel, no matter how many times he gets rejected in life, that “maybe this isn’t for me.” Every seven times he falls down, we’ll get up eight. I realize now, that it is my job to be the model of perseverance I hope becomes an integral part of who he is one day.

Love and Autism,

Erin