special needs parenting

Yep, that’s my screaming kid. (or, Autism for the rest of us)



**Republishing today in 2021, because these are all still relevant. This post was first published in 2016, and while a lot has changed, a lot hasn’t.**

Something sad happened to us this week. Maybe not sad, per se, but something disappointing and discouraging. For those of you new to our program here, Celia is my 10-year old daughter who happens to be on the autism spectrum. And this week, Celia was on an adventure with my mother-in-law, and on that adventure, Celia lost her mind. That’s my steel-magnolia euphemism for an autism meltdown, induced by sensory overload. Typically these meltdowns happen when she’s with me, and when I can use the tools in my autism-warrior-mama toolbox to calm her down. But this week, in this particular meltdown, she was with my MIL, in an unfamiliar environment, around people who don’t really know much about autism.

The fact that she had the meltdown isn’t the sad part. The sad part is that no one could handle the meltdown. No one could help. I wasn’t there. I clearly didn’t do my own due diligence to prepare my MIL, should one of these take place, and certainly none of the other moms felt comfortable stepping in. So there was my child, running around an otherwise quiet dance studio, screaming pretty disturbing stuff, all in an attempt to process what was essentially too much stimulation and not enough wind-down. And the response was the response we usually get, just without me, and without a coordinated “we’re leaving” or winding-down routine. I won’t be super-judgy here…I’ll just trust that you know the response I mean. The harsh looks that say “what the hell is going on with that kid,” or “somebody calm her down,” or “God, does she see that there are people around here with kids???” It happens.

I get it- seeing a 10-year old kid screaming in a fit that’s more commonly seen in a 2-year old is unnerving. And when I’m out with my kid and she throws one of these, I’m quick to apologize- I know you’re on the phone, or you’re trying to have a quiet dinner with your family, or you’re trying to savor the 15 minutes of silence you get before you have to deal with your own drama. I know. I’m sorry your kids have to hear some of the crazy stuff my kid says- some of it’s pretty dark. I know. And I’m sorry that screaming disrupted whatever you’ve got going on- we all have something. I’m a firm believer that everybody’s life is hard, and we just don’t know enough about each other’s baggage to judge who has it worse. I know that most of those looks we get come from a place of fear or ignorance or inconvenience, or some combination of those three. Maybe you want to help, but you’re afraid of what I’ll say. Maybe you’re genuinely afraid that my kid might do something harmful. Maybe you’re afraid you’ll offend me, or that you don’t have enough time to deal with this, or you have enough going on in your own life. Or maybe you don’t know what’s going on, and you assume my kid is just out of control. Maybe you’ve heard about autism but don’t want to assume that’s what’s happening here. Maybe you think I’m just a bad mom, or that I don’t know how to deal with my kid. Or maybe you just genuinely don’t know what to do. I understand. It’s hard.

But here’s the thing, after watching the news and seeing lots of people being shot and killed because someone is afraid of a situation or operating with less than all the facts, I have to tell you…I’m tired, and I’m scared too. The world is hard. There’s a lot of bad out there, I know. But we don’t have to jump to the worst conclusion. We can do better for each other. We don’t have to assume that every kid who’s acting out is a bad kid. We don’t have to assume the reason the kid is acting the way they are is because their parent is a bad parent. And we don’t have to assume that parent will resent us for reaching out.

Let me break autism down for you: in a typical person, information comes into the brain (the sensory path), the brain figures out what to do with the information (processing path), and the brain tells the body to put that information to work (motor path). In a person with autism, somewhere in that pathway, the signals get mixed up. The information doesn’t process the way it should. So when you see a kid (or an adult for that matter) acting in a way that is way off the mark for their current surroundings, chances are, there’s more at work than just a behavior issue. When a 10-year-old girl is screaming “I’m going to kill my mom so I won’t be part of this family” (told you it was dark), she’s not an emergent psychopath, she’s just a kid, trying to figure out how to get out of doing something she doesn’t want to do, while living on the autism spectrum.

So what is a well-intentioned person to do when one of these meltdowns takes place? Give this a try:

  • Ask the mom (or caregiver): “Can I help you?” Believe it or not, even if you can’t help, the fact that you’ve asked makes the situation seem less overwhelming/embarrassing.
  • Tell the mom (or caregiver): “Can I take something off your plate?” Again- chances are the answer is no. But even if you just hold my purse or stand with my shopping cart while I calm my kid down, that support changes the tone of the entire situation.
  • If you’re bothered by it and don’t want to help: move away without looking. Yep. Just relocate. It’s cool, we all get it, this stuff isn’t for everyone.
  • Don’t shoot us a look. Seriously. We’re trying. And if you know you suffer from bitchy resting face, do us a favor and just look away. We’re doing our best.
  • When the meltdown is over, encourage us. Say “you’re so strong,” or “you’re a good mom,” or “that is what unconditional love looks like.” Because it’s true, and I promise you, we don’t hear it enough.

Wanna know something even better? Try doing these things with all moms. When fear or ignorance or inconvenience gets the better of you, see if you can default to encouragement. And if you can’t, see if you can default to disengaging. Just walk away. Don’t shoot the look. Don’t offer the passive-aggressive advice. Don’t say the thing under your breath that’s meant to be heard. Fight the urge. You can do it. Because you’re a good parent, too.

And to the special needs parents out there, the ones who feel like you can’t go anywhere because your kid will disturb other people, because you don’t know how your kid will act, you who don’t take care of your own needs because you’re so busy tending to your kid’s needs, I say this:

  • You’re doing a great job. You’re working hard at something you didn’t cause and didn’t plan for. You took what life handed you, and you are handling it better and better every day.
  • This is a journey. There are good days and there are bad days. But it’s your journey with your kid, and not anyone else’s. No one knows how far you’ve come, and no one knows what you’ve put in. Don’t give them the right to judge your progress- that right belongs to you and you alone.
  • Autism looks like unconditional love. Loving someone when they’re hard to love. It’s okay to say that. It’s okay not to love every minute of it. And it’s okay to tell other people that sometimes, this sucks.
  • You are special, and your kid is special. Every kid has deficiencies. Every kid has bad days. What you’re doing with your kid matters, and above all, you matter to your kid.

It’s going to be okay. We all are. But we have to help each other. We need each other, and we need to be kind. It’s the only way we can fix any of this. Kindness and togetherness can change the world. I believe it. Now, more than ever.

xoxo~ LWH

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