People tend to talk about things they know nothing about as if they do.
They say they couldn’t do certain things as if they would have a choice.
They make martyrs out of people of inconsequence, and remain willingly blind to the things that matter.
I am one of those people. I’ve been that person. I’ve been you. On the ‘grand’ scale, we all have. We are all guilty of believing ourselves to be both more and less significant than we are. Dramatic, earth-shattering moments in our lives that mean nothing to others. Touched, but unaffected by the earth-shattering moments of others. Engagements and divorces; births and deaths. They touch us, but they don’t. Until they are ours.
We all have a sentence in our head that sticks around forever. A pinnacle moment when someone said something and it stayed with us for the rest of our lives. “I’m pregnant.” “I want a divorce.” “Your son has autism.”
That last one – that’s me. That’s mine. The worst part? Those words weren’t even uttered to me. I’ve delivered that news to the majority of the people in our lives– but I missed the moment that they were supposed to be spoken to me. Because I was sitting in a hospital room with a six pound miracle who needed his mommy. And the idea that I could have pushed a little harder to make that meeting – but I didn’t… it’s like acid. Because now there were two, and I knew the news. I knew the words even though I hadn’t heard them spoken. My presence wouldn’t change that. But he needed me. They both did. How do you split that need? How do you divide that time? When they both need you most, where do you go?
You go everywhere. You go to the IEP meeting for one, and follow it up with a trip to Early Steps for the other. You go to particular playgrounds because you know they have that one thing that Thing One is fascinated by – the one that scares the pants off Thing Two – but they also have the one thing that Thing Two is fascinated by – and by the power vested in me by the state of motherhood, I now pronounce you both happy at the same time for a whole ten minutes.
I’ve heard so many times “I couldn’t do what you do”; it makes me want to scream. Yes, you could. You would. You’d probably blow me out of the water. Because you don’t choose this – it chooses you. This miraculous, beautiful, painful life points a finger and says “You’re it”. Sure, you could choose not to fight, you could deny, ignore, or wallow in self pity. But what would be the point? It is what it is – and what it is just happens to be your job to make the absolute most of.
Encouraging the quirks and oddities – while trying to teach a child who understands nothing of social convention how to be himself, and still accepted by our society. Our harsh, judgmental, over-opinionated society. How do you say to a five year old “You can dress up like a princess at home, but you can’t wear it to the store because people will laugh at you, other mothers will say mean things about you, and you’ll be deemed an outcast because people are rude, too quick to pass judgment, and don’t give second thoughts to picking on the innocent.”?
What it comes down to is feeling like a constant hypocrite. “Be yourself, but don’t be too different or you won’t have friends.”
What kind of message is that to send to our children? A crappy one. And unfortunately, one that is completely true. Kids are mean. Adults are more so. That mother with the a-typical child who is calmly walking with her as she does her grocery shopping doesn’t look at my children and think “autism”. She thinks “bad mother.”
Because compared to her vanilla a-typical kid, mine are Funfetti cake with Pop Rocks frosting.
Thing One is singing at the top of his lungs while rocking his hot pink shoe laces, pushing his baby doll in his stroller. Thing Two is sitting in the cart screaming gibberish, and flailing his arms madly at every single round object in the store. I don’t even notice. This is my normal. And then Thing One trips on something, and his baby doll is sent flying. Activate meltdown in 3…2…1…
And as I fix the baby doll, waiting for the waves of screaming to subside, I hear “He needs to be disciplined.” “What he needs is a good ass-whooping” “Some people just weren’t meant to be mothers.”
The list goes on. After four years, it goes in one ear and out the other. But it still pierces the heart, even if the ears are deaf to it. We as a whole need to stop encouraging society to be so judgmental, so self-important and conformed. If my kid wants to push around his baby doll in the little pink stroller – so what. If he gets over stimulated and has a meltdown – walk away or offer encouragement. I don’t need your pity, your shaming looks and snide remarks. I have done more for my special needs children than you could ever imagine having to do with your perfectly developing child. I don’t pretend to know about your problems, keep your thoughts on mine to yourself.
Parents of special needs kids have special needs too. We feel guilty. All the time. About everything. Is it my fault? Is it something I did? Am I doing enough? Is this helping or hurting?
We question everything we do, everything everyone says. Every doctor, specialist, book, blog, and peer. We are more sensitive to our parenting abilities. We are not made out of steel. We are marshmallows inside aluminum shells. We look tough, but we aren’t hard to pierce. We spend our days working tirelessly while questioning relentlessly. We spend our nights doubting ourselves, our abilities, our choices. We lay awake scared, anxious, and worried.
When you see that mom – that frustrated mother, who is holding it together by sheer force of will, don’t be snarky. Don’t make painful comments under your breath. Offer a smile of understanding. Offer a hand. Just walk the hell away if you can’t manage that. Special needs children are the most precious gift life has to offer. And the parents who raise them are superheroes. Each and every one of them.