Special needs parents can sometimes feel incredibly alone. If you’re one of them, reading that sentence hits you hard. You’ve felt that way before. You’ll feel that way again. You might feel that way right now.
This isn’t another sad autism post from a parent complaining about his child. I don’t do that. I have long tried to point out the positives of my boy and how I have gained a level of autism appreciation for how it makes him unique. Our good times far outweigh our bad. Phases come and phases go, but as an overall human being, my kid is amazing.
The struggles, however, aren’t so easy to communicate. Everyone wants to pinch his cheeks until the first time they see him meltdown or lash out. Suddenly, the cuteness is overshadowed by the confusion. At that point, as I’m often told in a complimentary way, they don’t know how I do it.
Honestly, sometimes, neither do I.
I’ve been through a spectrum of my own, as it relates to raising Lucas. When he was younger, I tried time-outs and taking toys away. He didn’t care. I tried being stern in my voice or doing the big scary crazy-dad bugged-out eyes. Nada. None of it worked. It didn’t register and, when it did, his impulses couldn’t be controlled in many cases anyway. When it came to punishment, you could toss my kid out the window for trying to take all his clothes off and he’d just land on the front lawn in tears…and take all his clothes off. That’s who he is.
It took years to get to the place I’m at now. The father who calmly kneels next to his melting-down son at the side of a community pool came from trial and error. Yelling like a nutcase might be good for my emotional output, but it doesn’t calm the situation. In fact, it just makes it worse. It takes patience and understanding that I never had the patience or understanding to learn before him. I have had to field some inexplicable situations that have brought me to dark places mentally.
With all that said, it only seems to make sense that many people wouldn’t understand. They don’t get what my son is going through during his hardest moments. They don’t get what I’m going through during mine. They don’t see the extra work that goes into keeping him steady throughout his day. They don’t understand the worry for both his short-term and long-term care and how it always hovers in the back of my mind.
It’s a lot to take in and some people just don’t have that capacity. It’s just not a part of who they are. For an exhausted parent looking for a helping hand, a kind word, or someone to share the burden during the tough times, the blank stares and hurtful replies can be devastating.
The worst part of all of this is that I’m not talking about strangers on a plane or an old cranky waitress. While people like that can definitely cause agita in even the most even-tempered parent, this is about a lack of understanding that hits even closer to home.
Sometimes those closest to your struggle as a special needs parent will never understand, support, or assist in that struggle.
I’m talking about grandparents, aunts, uncles, best friends, and even spouses. It can be shocking. This is when you feel you’re most alone.
In many cases, it’s pure selfishness. There are people who were never meant to have a special needs kid, know a special needs kid, or care for a special needs kid. It’s just not who they are. You can usually spot these people a hundred miles away, but special needs families don’t come with an application. They’re part of your circle and, when it comes to understanding your harsh mornings, they might as well be furniture.
I relate to that struggle based on personal experience. Early on in Lucas’s diagnosis, I tried to reach out to those emotionally unavailable people with my fears. I’d tell them stories of what was happening and stare in shock at some of their responses.
Yeah. Everyone has problems.
Well, you are the one who decided to have a kid.
And, the personal topper of them all…
Forget Lucas. Lucas is fine. What about me? My knees are all messed up.
Yeah. Those are all true. Lucas isn’t the only being I have amazing patience for.
Much the same way that yelling at my son didn’t correct his bad behavior or help my mental state, trying to elicit an emotional response from emotionally unavailable people didn’t make me feel better either. It led to more anger and disconnections. I just ended up regretting the fact that I told them anything at all.
So, I stopped. I stopped telling those people in the hopes that they’ll understand. I no longer overexplained or clung to the idea of compassion. I know the people who get it. I know the people who don’t. Never the twain shall meet.
When I was commended for my patience with Lucas, I used to think it was lip service. To me, it’s natural. I love him and I want him to be happy. I would put my own needs aside for his because he’s my child. Just because his needs are sometimes confusing doesn’t mean I don’t take the time to help him.
Today, I take the compliment. I know that there is a world of people out there who could never do what I do. It’s not because it’s hard or my kid is so terribly difficult. It’s because they lack the compassion you need to put your own emotions second when you’re at your wit’s end in order to focus on the needs of someone else. They can never help without a thank you, say “hi” without a “hello” back, or even offer love when they fear it’s unrequited.
Ultimately, it’s their loss. My kids are awesome. Their dad is too. Those who don’t “get it” don’t need to. I don’t have the energy to explain it to them anyway. That’s kind of the whole point.