My Special Needs Son, My Illogical Guilt

It’s easy to feel guilty as a parent. If your kid gets a bad grade, you search for how you contributed to the lack of preparation. If they forget their lunch or misplace their favorite toy, it becomes your mission to make things right. Deep down, you feel responsible for many things that are often out of your control. It’s just how it is.

Having a non-verbal son on the Autism spectrum brings on a new variety of those situations. I’ve heaped plenty of blame on my own shoulders, especially in the early days of his diagnosis, for many reasons that would be considered unreasonable.

snowbeanI don’t mean guilt over his Autism. Sure, I feel a responsibility for that, but it doesn’t eat me up alive or even seem all that illogical to feel that way. After all, he’s my son. It doesn’t mean that Autism is the worst thing in the world to happen to him. But if anything makes him struggle even one percent more even one percent of the time, I would put that on myself. He’s mine and a guilt like that is reasonable.

I’m talking about the illogical guilt I wouldn’t see coming. It’s the guilt that creeps up on you. Your brain tells you that it’s not real, even as you’re feeling it, but it doesn’t make you feel it any less. The best example I can give is something that, believe it or not, I have never spoken about to anyone. It was a moment that passed and one no one has ever brought up since.

When Lucas was a baby, I would narrate him to the family. It was a slick little high-pitched voice straight out of an old Bugs Bunny cartoon. At the end of our weekdays, when the family would converse, I would do his voice and put him in the conversation.

Waddaya say dere, Fam? I made a poopie in da ol’ dye-pa today. Wha’did you do dere, ol’ pal o’ mine?

Everyone would laugh as I would take his little arm and move it back and forth with each word. He may have been a baby, but Lucas had a say in our nightly conversations. We smiled. He smiled. It was a big friggin’ smilefest all around.

Now I know I’m not the first dad on Earth to make his infant “talk” like a puppet. Many parents do it and normally stop once the baby starts talking. So that was the unspoken plan. I would give Lucas a 1920s carnival barker voice until the day that he finally said his first word. He was tiny, but they grow up so fast and I knew it that day was right around the corner.

But it wasn’t. That day never came.

As the months ticked by, it started to become evident that the wait was becoming much longer than expected. We began to focus more and more on his missed milestones behind closed doors. The meetings and evaluations were piling up and each one rocked me a bit more than the last. I wasn’t sure what, if anything, I could do to help him. I just knew I felt powerless. My daughter Olivia, at about five years old, wasn’t wise to any of that though. To her, it was life as usual and her baby brother was doing great.

We were all sitting around the dining room table on one of those mental anguish evenings when Olivia looked up at him in his little high chair.

Hi Lucas!

He looked at her. I thought that was it. Then she turned to me.

Daddy! Make Lucas talk!

Those words ripped through me like a knife. They still do to this day. She had no idea how deep that statement was and what it really meant to me, especially at the time. It was every piece of my self-absorbed guilt all in one sentence. That line that made me feel like I couldn’t fix the biggest obstacle our family had ever faced. I sat there dumbfounded. She repeated it.

Daddy! Make Lucas talk!

I put on my Dad face and hid any form of deeper turmoil.

No, Olivia. You know what? Maybe I should stop. After all, he’s getting older and soon he needs to speak for himself. I don’t want him to think that I’ll be doing it for him all the time.

She wasn’t thrilled with the idea, but eventually nodded and moved on. I didn’t though. The guilt started almost immediately and focused on so many different aspects of my behavior. Suddenly, this fun game of making my baby talk felt like I had been mocking him this whole time. I know it didn’t appear that way, wasn’t meant that way, and couldn’t have possibly been that way since I could never have predicted the future. Yet, it still felt that way to me. I became angry at myself for it.

handThen, on top of that, I felt guilty over how I had been arrogant in my assumption that he would one day speak. Like most parents, I pictured a future where he would wake up and say, “Hi Dad. How’s it going?” So there was no danger to narrating him as an infant because, eventually, he’d speak on his own. To me, it felt like I had become the cause of his lack of his speech. I wasn’t sure how, but I worried I had hurt my favorite boy in the world even though my reasoning made no sense at all.

But to me, it did. Some days, it still does.

Moments like that are more abundant than some may realize and they all fall under the umbrella of the biggest guilt of all. It’s the feeling that I, as a parent to a child with missed milestones, should always be doing something to help. Doing what, you ask? I have no idea. Just something.

After all, parents don’t let their kids fall behind the universal checklist of life, right? You hear all sorts of stories about kids who didn’t talk until their dedicated parents “worked day and night” to teach them their first words.

Yet, here I am, it’s night and I’m watching a rerun of Family Guy while he’s not speaking. It’s all my fault. It’s like casually reading a book while your house is on fire. How can you focus on anything else?

Logically, I know that “working day and night” is meant as a metaphor. The world doesn’t work that way. Nonstop lessons and work are common in montages for 80s movies and cake mix commercials, but not real life. It was be insane to monopolize every waking moment that Lucas and I have with verbal exercises. Why then, did I still have these knots in my stomach?

It took time to realize that my goal in life is to make my children the best they can be. That doesn’t have to involve all-day word practice because, to be frank, my son is already the best he cane be. Sure, we can work on advancing certain skills he has, but that shouldn’t consume either of our lives. It should be a part of our lives. I know that now, although sometimes I still have to force myself to remember.

My son is non-verbal. He’s not a house on fire or someone in need of fixing. The responsibility I feel has more to do with me than it does with him. All of these emotions really boil down to me wanting to carry him past any struggles and striving to give him the best life I can.

It took a while to realize but that illogical guilt might not have ever really been about “guilt” at all. It’s about wanting my son to be happy and making sure he has the happiest life possible. Anything that could seem to fall short of that falls on my shoulders and, as the Dad, I’m OK with that. It means that all of these moments of “guilt” were never real guilt at all. They were all just reminders of how much I love him.