Tales of raising a child with autism are typically about the difficulties they bring. There are memes about exhausted parents and stories about meltdowns. To those outside our homes, the difficulty must be unimaginable. I know this because people will say that to my face.
It must be so hard with your son.
Yeah. I guess. I mean, Lucas can be a handful and the life skills he’s still learning at ten can feel overwhelming to me when I need to do them for him. There are messes and issues and unexpected regressions around every corner. Worries, guilt, loneliness – all of it. You know the list. There are times that can be difficult.
As I always remind them, though, all parenting is difficult. My non-verbal son might need help avoiding danger or transitioning into different situations. But he doesn’t bully anyone or do mean things out of malice like a neurotypical person might. Parenting him is unique in what the issues are, but not unique in that issues exist. Issues exist for all of us. I’m teeming with them, as I will explain in a moment.
One of the things, though, that rarely gets mentioned when it comes to any sort of speical needs parenting is how much many of us need these children in our lives. I’m not just saying that in the general sense. This isn’t a statement about how my kids are my everything and keep me tethered to the Earth during times when I feel the desire to fly away to another place. I mean, that’s true, but that’s not what I’m talking about now.
I’m talking about those days when I’m down, feeling off or upset. Riding the bipolar express, I’ll be overly sad with a general feeling of emptiness. My BP1 can both lift me up and crash me down.
People with language will reach out with their words, but there are walls there. Many of them are walls I’ve built and maintained for decades. Dealing with mental struggles, someone will reach out and, like John Stossel, offer the standard question. Standard question?
How are you doing?
A familiar voice in my head tells me to shut up. It reels me back in with statements like, “They’re just being polite. No one wants to know the truth of how you feel. In fact, you have nothing to explain anyway. Say you’re sad and they’ll ask why. Then what do you say? I’m nuts? Cause you are. Just respond like a normal person.”
Eh. I’m OK. Same old, same old.
It’s not a lack of trust or care and it doesn’t happen in every instance. However, when dealing with negative feelings I can’t trace back to a tangible reason, it’s hard to turn to others for support. The entire situation makes me feel broken inside. It’s something I’ve always struggled with.
So I sit, feeling sorry for myself and try to go about my day as normal. I work, watch TV, play video games, clean, or whatever other sense of normalcy I can grasp onto through the light fog. I’m not majorly upset or looking to fly away, as mentioned earlier, but down enough to feel it in my bones. My body aches during times like these.
Then I’ll feel a tap on my arm. I look up and there he is.
My son, ten years old and non-verbal, will be standing there with his iPad up to his ear and a smile across his face. He’s loving the world and loving this moment with a sense of pure joy that has as little reason as my sense of sorrow. I see it in his eyes and I feel it in my soul. His smile is just for me. He came and found me to show me. He doesn’t ask me anything. He’s simply there. I hug him.
He changes my day. He changes my life.
It is difficult to fully stress the important role he plays in my world. The days when Lucas is here are like having a personal smile on the standby. His mere existence reminds me that the world can be a happy place in general, just as my own brain sometimes tries to convince me it’s the opposite. I need him and his outlook. I can’t even begin to tell you how much.
Is caring for a non-verbal child with autism difficult? Sure. Let’s not pretend that there aren’t days when his smile is there just as I’m looking at a destroyed room of toys strewn everywhere or a toppled plate of cut-up pizza pieces, face down on the floor. Those times happen quite often. Those times are tame compared to some others.
However, that’s the trade-off you make for getting to raise children you love. Just as he deals with trips to the store he doesn’t want to take or special events for his sister in order to have fun times with me, I put up with uniquely difficult parenting moments in order to have the fun times with him.
Everything you read is true. Raising a non-verbal child can feel all the ways that some parents say online. Believe the memes and read the stories, but remember that nothing is black and white in this world, especially raising a boy like mine. Some days are hard because of him, but most days are better because of him.
My son needs me, but I need him. In fact, I need him more. I feel the same way about my neurotypical daughter, but I feel like most people can understand that. They can relate. When it comes to my son, though, they might not realize, but I want them to. It’s the whole reason I write.
I live for their happiness and their happiness helps me live. Without my kids, I don’t know who, what, or where I’d be. No matter what they need, it’s all worth it.