Something I Had To Accept As A Special Needs Parent

When my daughter was little, I was tasked with guiding her through the most basic of life’s expectations. I still guide her toda and although the lessons have increased in difficulty, I have always rested on certain truths to help push me forward in showing her right from wrong. I’d tell her (and myself):

You’ll thank me when you’re older.

Or, at the very least…

You’ll understand when you’re grown.

And, in most cases, she did. As the years went by and time passed between lessons taught and lessons learned, the reasons behind them became apparent. Don’t be pushy to others. Stay away from strangers. Don’t eat stuff you find on the floor at Walmart. She gets it.

great special needs sibling

My son, however, was a different story from the start. As a non-verbal boy with autism, Lucas has been seeking my guidance through many of life’s tasks since the day he arrived. Today, although he’s just shy of teenage years, many of those early lessons are still part of our routine.

Don’t be pushy. Stay away from strangers. Don’t eat stuff you find on the floor at Walmart. The lessons are the same, may have taken a bit longer, and, in many cases, still linger to this day. Unlike I did with his sister, I don’t offer that same familiar assurance:

You’ll understand when you’re older.

The issue? He might not. In fact, for some of the more abstract lessons, he probably won’t. It’s not negative or pessimistic. It’s true. I know my son and love him for all he can or can’t do. I don’t pretend and, while I can always hope for the best outcomes, I’d love him even through the worst.

Most of Lucas’s life skill tutorials are based more on repetition than comprehension. That’s not to say that I haven’t explained these deeper meanings through words and motions. I’ve been talking to him as if he was a grown-up since he was a baby. There have been countless one-way conversations. So, I definitely tell him my reasons, but he might not “get it”. He might never get it.

Case in point – cupcake that doesn’t belong to you on the counter of someone’s house? Don’t shove it in your mouth, on your shirt, and then accidentally step on it and run through the house. There are some very simple reasons to avoid that.

child autism sense humor

For starters, it belongs to someone else and eating it deprives them of their cupcake. Also, making a mess in someone else’s house will force a person to clean it up. Your clothes get stained, their house gets stained, and your likelihood of getting invited back to various homes decreases. It’s a real issue that has real reasons.

Lucas gets none of that. Sure, I might make him help with the clean-up or do the wagging finger “no, no, no” motion. But the abstract ideas of being a good guest in someone’s residence are lost to him. I might get him to grasp that idea one day, but today’s not that day.

This means that I have to be “the bad guy” to him without the hope that one day, he’ll understand why I had to prevent him from doing all the things that he wants. That’s a hard pill to swallow, but a true test of any parent and our motivations for doing what’s best for our kids.

This approach to the world seeps into every aspect of my parenting with him. Just as I said to his sister early, she could understand one day, I also told her she’ll thank me when she got older. For some past moments, she has. For others, we’re still waiting.

For Lucas, I doubt he will.

That’s not to say he doesn’t appreciate me. He does. I get hugs and kisses and all sorts of affection that “make it all worth it”. He’s my little pal and I couldn’t ask for a sweeter boy to have in my life. He’s unique in ways that most people don’t realize and “special” stretches beyond an educational level when I think of him. He’s special in all the ways that “special” is…well, special.

father son autism

But he’s not going to thank me for things I’ve done, at least not in the traditional sense. He won’t acknowledge a t-shirt I bought him on vacation or a new toy waiting in his room. Lucas will never care about a surprise and most birthday presents, even those he eventually loves, are met with initial disinterest in favor of his iPad. There’s no offer of thanks for the things I’ve done and no expectations that he ever will.

I had to accept that early on and, the saddest part is that some parents never do. That’s where you get the deadbeats who leave their family leading some to commend me, as a special needs dad, for “supporting” my son, as if that’s where the bar is. Dads and moms give up all the time, either physically or emotionally, and see children like Lucas as chores. What’s the point of making their lives fun and wonderful? They will never appreciate it anyway, right?

Then why do we do it? Why drag him bowling when he’d be just as content laying in his bed all day swiping YouTube Kids? Why get up, get dressed, and drive two hours to Medieval Times Dinner & Tournament if he’s likely to just meltdown? Why bother? Life is hard. I need a break. Whoa is me.

I just don’t think like that. I couldn’t imagine thinking like that. Sure, my heart surgery changed my outlook on the world, but it wasn’t just a near-death experience that did it. It was just the way I saw him and the acceptance, when he was little, that he might never appreciate like other children grow up to. He might never “get it”.

my baby is almost my height

So that’s not why I do it. Just as Lucas taught me that saying hi to a child isn’t done just so you can get a “hi” back, doing good things for a child isn’t just so you can get some belated pat on the back years later. You do it out of love. You do it to make their lives better. You do it because, deep in your soul, you feel that it’s right.

My boy may never thank me, understand why lessons are taught, or truly grasp how much I love him. But I know that if he can understand those concepts at all, he will see them all through the way I’ve raised him. I know that my actions are worthy of thanks, understanding, and love. There’s a part of me that thinks he might have all those thoughts inside and be unable to show it. That would be great, but even if he doesn’t, I will do them all anyway.

He deserves it, even if he can’t express it. He’s brought a sense of purpose and love to my life just as his sister has. It’s not about his appreciation. It’s about mine. Once you realize that, loving a boy like mine is the easiest thing in the world.




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