Grieving The Life I Expected For My Non-Verbal Son

When I first started writing about my son, I made myself a promise. I would never ignore the parts of our story that make me uncomfortable in hindsight. I want people to see who we are today and learn that, as the father of a non-verbal son with autism, things aren’t dire by any stretch. My boy is a wonderful part of the family and parts of his personality exist because of his autism. Those parts are often some of the most unique and beautiful traits you could ever see in a person.

I know that now. The truth, however, is that I didn’t always know that. No parent instantly becomes an autism expert as soon as they hear it said out loud by a professional. It requires care, understanding, and constant learning about who your child is. It’s a process and that process stretches beyond textbook things. It involves emotional things.

Those emotional adjustments feel mostly finished for me now, but for many out there, at different stages of parenthood, they are still happening. Tomorrow, there will be new people going through it. It’s a major aspect of parenting a child with any challenges.

It’s the part where you have to grieve the life you expected for them. It’s when missed milestones now become the knowledge that there will be many more missed going forward. Today’s lack of speech is tomorrow’s lack of football scholarships and eventual grandkids. You start to come to grips with a lot of never-wills.

And for many parents, it’s devastating.

I know. We’re not supposed to say that out loud, but it’s true. While I eventually learned who my son is and how a life like his, while challenging, isn’t necessarily a bad thing, there was a time before that epiphany. I, like many others, had to accept some hard truths.

It was a slow build. Little by little, I stopped doing that “maybe tomorrow” thing that parents do when they start to see their kid isn’t doing whatever the books say he or she should. I would make deals with the universe to grant my boy the skills he needs and me the serenity to get through. I’d say it in my head.

He’s only two. Some kids don’t talk at two. Wait until he’s three. He’ll definitely talk at three.

balloon

Eventually, three came and went and many other arbitrary dates with it. Promises that I made to myself were unkept and, truth be told, they were promises I had no right to make. I was still at the point where I believed that my son’s autism, speech, and needs were all challenges that I, as his dad, could somehow “work” my way out of.

I couldn’t. Lucas’s challenges are his own. I could do everything I could to help him reach the highest potential he could. Therapies and techniques were all within my power. I could lead him to the race, but I couldn’t carry him to the finish line. Not then. Not today. Not tomorrow.

My kid wasn’t a lawn to mow or a house paint. He isn’t a job that gets done because I buckle down and do it. He’s a person. Sure, he’s my person, but he’s his own person. He’s a person who needs to accomplish his accomplishments on his own. Life isn’t a tag team match. It’s an individual marathon that we all run at our own pace.

Once I realized that, I also realized that there will be many finish lines he might not cross. Some, he might choose not to. Others, he might be unable to. I don’t get to pick which one is which. All I can do is buy him the best sneakers, hire the best coaches, and stand on the sidelines to hand him water.

Coming to that conclusion made me have to accept little league trophies or wrestling shows at Madison Square Garden could possibly never happen. He might never drive a car and he might never say “daddy.” It’s a hard pill to swallow at first, but once you do, you see the beautiful picture that’s obscured by the seemingly missing pieces.

As the years went by, though, I learned who my son is. He’s a wonderful boy with talents that aren’t as typical as the ones I envisioned before he was born. There are few, if any, people like him in my life and I’m grateful that he is here.

That acceptance eventually happened, but there was a definite hump to get over in those initial years. Struggling with it doesn’t make me a bad father and isn’t something I should be ashamed of. It was part of the process that lead to who we are today.

In order to appreciate the great kid I have, I had to take the time to say goodbye to the one I thought I would have. If I could go back in time, I would tell that version of me to work through it and hold on. The kid he’s about to get is much better than any he could have imagined.

READ NEXT:

THE IMPORTANCE OF TEACHING HIM LIFE SKILLS


Get Your Copy of James Guttman’s Book – The Expectant Father’s Activity Book!