I see you. I see you sitting over there, but I won’t make any eye contact today. I won’t because I can tell it hasn’t been a great day for you.
Maybe you didn’t sleep well. Maybe your son didn’t either. Maybe that’s he’s been up since 3 a.m. which means you’ve been up since 3 a.m. also. Maybe in those early hours you’ve had to deal with poop, lots and lots of poop. Or stims. Or both. Maybe you’ve been cleaning up poop and listening to stims all morning long. Stims make your kiddo happy, but what a number they can do to your patience!
Whatever it was that set off your day, I hope tomorrow is easier. Because today looks like it’s been awful. And I’m sorry. And now you’re sitting there on your side of the waiting room hoping that no one will notice you or how tired, sad, and frustrated you are. I recognize that on your face and in the way that you’re sitting. I know that you’d rather be curled up in the fetal position in the corner, but that’s not an option. You’re trying to melt into your seat, and that’s my cue to keep my distance, to keep a friendly smile to myself, and to not even think of making any kind of contact with you. I’d like to because I’ve seen you in here before, and you seem like a really nice person.
The last time we shared the waiting room area, my son was the one with the off-the-wall behavior. Remember that? Remember his behavior and how it escalated? And then how long it took for him to calm down? I thought it would never end. As much as the other waiting room parents tried not to look and tried not to listen that morning, I know they couldn’t help but watch and listen. We must’ve looked like a train wreck. It was my turn to be mortified that day. Today, it was your turn.
Both times, no one scoffed. No one complained. No one judged. That’s because we all get it. We all live it. The frustration. The humiliation. The sadness. I’ve felt it. It washed over you once you knew that your son was safely in the back with the therapists. That’s when my heart broke into a thousand pieces for you, which is why I want to tell you something.
No matter who you are, those emotions are never easy to deal with. Add in some non-verbal regressive autism aggression? It’s far from easy. I know. But the way you handled your son this morning – his constant stimming, the loud outburst, then the intense yet understandable behavior right before the therapists called his name – that was incredible. You calmly guided your son. You quietly held yourself together. You stood there wishing you were invisible. I don’t know how you did it, but you also stood there full of grace.
I totally get why you need a break now and why you don’t want to look at anyone or talk to anyone or think about anything at all right now. You’re stuck here. With strangers. Feeling utterly and completely overwhelmed. In a waiting room.
If you’re anything like me, you have a love/hate relationship with waiting rooms. My guess is that you have that sort of relationship for the same reasons I do. Admit it. You’d rather be somewhere else. Anywhere else. Some waiting rooms are pleasant, but many of them, like this one, are small, stuffy and uncomfortable. Sitting in waiting rooms for any length of time can range from feeling like you’re in purgatory or worse, feeling like you’re in hell. Purgatory because hello! The waiting. The endless, boring waiting. And hell because some of what you and your child have gone through feels like a life sentence full of gloom.
I’m sitting here in this waiting room because I’m waiting for my son’s skills to develop. I’m waiting for him to catch up. I’m waiting for him to be able to move on. He’ll be in therapy for awhile…as in many more months to years. So I’m here, too. Waiting. While I’m waiting for him, I’m waiting for something else, too – for this not to be so hard. So expensive. So time consuming. I’m so dang tired of waiting. I can’t wait for the waiting to end! You know what? I bet you can’t wait for the waiting to be over, too.
Now, for the positive.
Sure, waiting rooms may be teeming with siblings who are bored out of their mind, and wrinkled or torn magazines from two years ago, and discarded snack containers with half-eaten granola bars, but they are also filled with something else. Resources. I don’t mean the outdated notices or cheesy posters haphazardly stapled to the waiting room walls. I mean parents like you. Yes, you! You’re the best resource here because you’ve got a lot to offer.
You’ve got what some school districts, the pharmaceutical companies and the insurance companies fear: Knowledge.
You’ve got what new parents with newly diagnosed children desperately need: Strength.
You’ve got what tired veteran moms like me need: Patience.
You may not think that you can offer all of that or even any of that after this morning’s rough start, so let me tell you about the other times that I’ve seen you in this waiting room before. I’ve seen confidence. I’ve seen kindness. I’ve seen reassurance when you generously share the name of that agency that’s helping, the name of that therapists that’s listening, and the name of the doctor that’s working with you and not against you. That’s a lot of useful information! And the fact that you willingly share it in casual conversations week after week after week makes you the best resource. You are serving a purpose which has spread well beyond the four walls of the waiting room.
Your baby steps have created a path that others parents are walking right now.
Your voice has been heard, and those who’ve listened have eagerly shared your knowledge with others.
Your suggestions have been tried, and they’re helping open doors for other people’s children.
Your time and your effort matters. And even if it’s been just one person who’s benefited, that’s one less person who’s feeling lost and alone and in the dark.
Feeling lost and alone and in the dark is a terrible place to be. My guess is that lots of parents, both typical parents and parents of special needs children, have been there at one time or another. When I find myself in that lonely, dismal place, as positive as I try to be, I don’t always bounce back. I wallow. I fume. I wish desperately for things to be different. I know that before things get better, though, I have to change my attitude. That’s when I think about other parents and ask myself what would they do. That’s when I think about other moms like you. It isn’t that you’ve solved all the problems or dealt with all of the emotions. It’s that you keep trying. You keep showing up. You somehow keep your chin up when others would’ve caved and given up a long ago. Even after today’s waiting room disaster, I knew that you’d pull yourself together.
And you did.
You did that before your son finished his session. You did that even though you know that as soon as he was done he could quickly go back to stims and outburst and hard-to-manage behaviors. You may be right back to where you started, but that that doesn’t seem to stop you. You pick up, you move on, you face the next challenge and tackle any new challenges that crop up. You do that despite potential frustration, pain, and embarrassment. You give me hope that I can do that, too. I may not do it as gracefully as you do, but I promise that I will try to pick up and move on and face the next challenge that comes my way.
So, to the autism mom in the waiting room who is handling more than one person should ever have to handle, thank you. Thank you for being brave and for not curling up in that corner. Thank you for sitting there where the rest of us can see you and can feel each and every raw emotion that comes out of you. Thank you for your honesty in tough situations and always for your sincerity. You’ve taught me more than any textbook or parenting book ever could. I just hope that the next time I have a day like you had today that I can compose myself as well as you did. It takes an incredibly strong person to do what you’ve been able to do within the confined space of this small, stuffy waiting room.
Cathy Jameson is a Contributing Editor for Age of Autism.