Moments That Make A Special Needs Parent Question Everything

As a special needs parent, I try to stay positive. Maintaining a stiff upper lip and a cheerful disposition keeps the plans I have for my son on track and his future bright. I’d say that 99% of the time, I’m looking at the sunny side of the egg.

Life, however, is a 100% game. While 99 is a near perfect score, it’s not the full picture. There’s still that 1%. That 1% can kick you square in the teeth every time.

And it does.

Those moments of pessimistic clarity can sneak up on you too. Sometimes, it can be slipping into a reality that others see, but you don’t. It can be boasting to his teachers, as I did a few weeks ago, that my son had put his shirt on all by himself. I let out a cheer and announced it with all the vim and vigor of a little league dad. My boy had taken it from my hand, pulled it over his head, and gotten both arms in. For us, it was a big deal.

Then a voice in my head kicks in to say, “What are you celebrating? He’s ten. What does that mean for his future?”

The voices sound like the downtrodden opinions of the general public who see my son in a way that I don’t. After all, I’m his father. I view him through the rosiest glasses of all. The world sees someone different altogether. They see someone I don’t see.

These aren’t just strangers either. These are former friends and family. These are “loved” ones who love themselves more than anything and see my boy as a burden and a blame-target. They’d never buy him souveniers or include him in group pictures. They view him as a chore that they don’t want to be saddled with. They’re the worst people of all.

Mental mind games and words that hurt from people who don’t matter can be tough in those times. Still, though, I stay upbeat. After all, we’re celebrating here. Slow and steady, right? Put a shirt on today, balance the budget tomorrow. He’s my kid and I love him with all my heart. Stay the course.

But then, there’s the other side of that sunny egg. The burnt underbelly bonding to the red-hot pan below can scorch worse than any shirt-wearing celebration can.

Those other moments are the ones that make me question what exactly he knows at all. They’re not the victories, but the bitter defeats. It’s seeing him pick up food from the ground and putting it in his mouth or breaking his favorite toy for no reason at all. It’s the banged heads and self-harm. They’re the rare but jarring moments that are far worse than anything most people can imagine. They’re the moments I don’t even want to say out loud to the people I love the most, much less write about here.

Those are the moments that rip your heart out, flip your world, and make you question everything.

I’ve had those moments and they make me go numb. Suddenly, all that optimism I exude day to day feels like I’m kidding myself. The clock is ticking and all our progress feels like it’s not enough given the track he’s on. The soul-wrenching errors he’s making in that moment cause me to wonder just how dire the circumstances really are. The words going through my head more than make up for the ones he doesn’t say out loud yet, and that blame game garbage I’ve tried to avoid comes full circle to hit me harder than anyone else’s meaningless opinion ever could.

I realize that, at that moment, I’m witnessing how some people see him all the time. They see his chutes, but never his ladders. His future, if they could choose it, would be one where he never tried to be anything more than he is right now. They’d hire someone to change his clothes until the day he died, rather than teach him to do it himself. Because, in their minds, what’s the point?

The timing of my self-imposed emotional beatings vary depending on the severity of the incident I witnessed. It could be an hour or it could be a day. My mind questions the reality of our lives and whether I’m projecting some sort of fatherly optimism on him that doesn’t belong. Those are the days that go on for years and kill me with every passing minute.

Eventually, though, those minutes end. I get pulled from that mental state and I’m back to where I am the other 99% of my time. Dad-mode returns and Lucas becomes capable of anything in my mind. Anything.

He doesn’t have to do anything to pull me back, either. Sure, there could be a small victory or a smile or a kiss on the cheek to knock the pessimism out of my brain, but that’s not always the case. Sometimes it’s just because he’s him and I’m me and I love him.

What I’m trying to say is that everyone goes through these times. Even for a neurotypical child, there are times that make you wonder if you put your kids on a pedestal made of straw. Can they be everything I see? Do the pluses really outweigh the minuses? Is my kid really as perfect as I think?

Yes. The answer is yes.

The struggle is real, and the pitfalls exist. But my son will get through them. Why? Because, even if he had no one else on the planet, he has me. We’ve made it this far. We’ll make it farther than any of the negative voices realize and we’ll do it one sleeve at a time.