The Spoken Joys and Silent Worries of Parenting a Nonverbal Child With Autism

I talk a lot about being positive. To be honest, though, I’m not entirely sure what that means. I know that it’s about finding bright sides and silver linings with an upbeat attitude. In that sense, it is something I embrace.

People hear my words, especially as it pertains to my nonverbal son with autism, and remark about how much positivity he and I share. The truth is, I definitely had to work my way up to certain understandings. When Lucas was still a baby, struggling to reach all the milestones the thick books said he should, I battled a silent, yet constant, inner fear. My head swirled with “what ifs” for his life and concerns about the judgments passed by those around me for his differences. Every confused stare from a family member left hanging on a high five and all the questions about whether “he has said anything yet” hit me hard and often.

What if it was my fault? Either through nature or nurture, maybe I’m the reason for his tougher lot in life? Could I have caused his lack of speech myself? Family and friends, some well-meaning and some just awful human beings, posed those very questions to me at times. It made me feel guilty to just think about it, but of course, it wasn’t true.

This stiff upper lip I display today developed with time. It came from watching him grow, learn and find his place in the world. Language still hasn’t come and there is still a long and probably unfinishable road ahead. However, certain things that were impossible for a baby Lucas to do started to become feasible with age. Whether it was sitting for a show or letting me cut his hair, my son was becoming his own person.

I pointed that out last night, when I took him and my daughter out to the ol’ California Pizza Kitchen. Despite hunger and a long wait, Lucas politely sat, without any iPad or electronic toy, for the duration of the meal. I pointed it out to his sister.

“Do you see this? Remember when we couldn’t take him out to a restaurant like this because he would get overwhelmed and try to escape or scream or fall asleep? Remember he fell asleep on the table at Friendly’s? Look how well he’s doing now!”

Less impressed than me, but impressed nonetheless, she nodded in agreement. He has a lot to be proud of and we have a lot to be proud of him for.

The happy train, while not running as often and strongly as some might assume, is still real around my head. Many days, Lucas is my favorite person to be around. For all the communication pitfalls we hit or messes he can’t clean, he is one of the easiest and cheerful companions I can have by my side. We share unspoken expressions that elicit laughter and his glowing smile for me, even when I’ve done nothing to earn it, makes me feel like the most special person in the world. It’s all good.

Actually, it’s mostly good. To be honest, there are definite down times and almost all of them are due to me. The love I have for my child is so massive that, while it is the cause of my pride, it’s also the anchor of worry that hangs around my neck.

Sometimes I vocalize my worries when we are alone. I’ll walk into the kitchen to find that he’s just gone into the fridge and stuck his hand into an uncooked platter of spinach artichoke dip waiting to be made for dinner. There are handprints all over the door, his pants, and his face. I stand there and, to put it mildly, I’m deflated.

I’m not going to be here forever. I worry about you.

Those moments where it is just him and me, I’m more honest with myself than at any other points of my day.

Negative? Positive? Neither. The problem with all of this is that nothing I’ve said is untrue. One day I will be gone. One day he will be grown. I worry that he will struggle to find someone to help him. It rips me apart inside just to think about it. I know others who care for an adult with disabilities on some level. I know I am going to be one of them.

Yet, am I positive most times? Yes. Seeing the good in my son isn’t some sort of mental “positivity” trick. It’s real. It’s about noticing the great things that are happening and the successful progress he’s making. He didn’t sit at the table nicely three years ago. Today he does. That’s not positive. That’s a fact. It’s a parental observation that, if noticed, can fill you with pride.

That doesn’t erase the concerns that live in my head every single day. They’re the fuel that pushes me forward to teach him everything I can. Without that sense of dread that dwells in the back of my brain on a regular basis, the desperate race I run to help him reach those accomplishments might not feel so dire. Those negative feelings of worry push my positive actions of parenting.

Sometimes it kills me inside to think about them, but they’re important. Without that knot in my stomach over his future, I might not be as present today to help him climb that ladder. Am I sure that these “negative” emotions make me a better parent?

I’m positive.