One of the biggest obstacles I face as the mom of a child with sensory processing disorder (SPD) is most people simply don’t understand what it’s like for my daughter to navigate through the challenges that everyday life throws at her. They also don’t know what it’s like to be her mother and have to consider her needs in every decision I make on a daily basis. Things most people don’t think about like trips to the grocery store have to be planned with the most careful precision.
Most people think my parenting style is overprotective or neurotic even when I tell them my daughter has SPD. I actually don’t want us to leave the party early, but she can’t take the volume of the music being played.
I also used to run home for her nap time because the only place she can sleep is in her bedroom with all natural light blocked out. “Skip her nap” is what most people say, not knowing doing so would overstimulate her so much that the entire rest of the day would consist of one meltdown after the other. She would also have problems falling asleep at night and would wake up at least an hour early the following day.
Don’t get me wrong, I know most people mean well. There is little known about SPD and most people simply don’t understand what it’s like to have it or be a parent of someone who has it.
In the everyday hustle of life as a parent, even I sometimes find myself dismissing the challenges my daughter goes through. Like when I get aggravated because we’re running late for school, and she wants to change her pants because they feel funny. Or when she begs me for weeks to take her to Chuck E. Cheese and after driving all the way there, she won’t enter the building because she can hear how noisy it is from the outside.
Every day I wake up and tell myself today is going to be the day when I have more patience. I’m going to respect her sensitivities and make her feel good about herself even though so many things can be challenging for her. And yet, every day life gets in the way, and I find myself frustrated with her and hearing her say, “Mommy, I’m sorry,” about things I know she simply can’t control. The fact of the matter is, unless you can truly feel what a child with SPD is feeling, you can’t understand it even when they’re your own child. So how can I get annoyed with people who don’t understand our situation when even I can’t understand it most of the time?
I propose you all try this little exercise. Think about your quirkiest habits: things you avoid, things you seek out and those little things most people wouldn’t notice but drive you up a wall. Once you’ve thought about it, think about how those things make you feel physically, mentally and emotionally.
I’ll go first: I hate turtlenecks. I like the way they look. I even get jealous when I see people wear them because I wish I could, but I hate them. I have tried countless times to wear them, but no matter what, I just can’t. How do they make me feel? When I wear them, I feel like I can’t breathe. I start to sweat, actually. I can’t focus on anything else but that piece of material around my neck, and the longer I have it on, the tighter it feels. One time, I was driving with a turtleneck on and I actually had to pull over because the feeling of it made me so anxious I thought I was going to pass out.
The same goes for fluorescent lighting. It gives me such a bad a headache that I feel like I’m going to get sick. I sometimes wear sunglasses indoors. The brighter the light, the sicker I feel. And I hate rides. Any and all types of rides. That stomach drop you feel that most people crave. The rush of adrenaline. Just thinking about it makes me feel woozy. So I never went to amusement parks. I just didn’t want to hear one more person tell me to “just try it, it’s not too fast.” No, thank you. I will happily stand at the bottom and hold everyone’s stuff while you enjoy that awful, nauseating feeling most people call an “adrenaline rush.”
While you might be reading and laughing about this, just sitting here and conjuring up the feelings over my “quirks” is literally making me feel dizzy and sick to my stomach. Now, as you think about your own quirks and sensitivities, think about what it would be like to wake up every day and have every little part of life making you feel that way: the drip of the coffeepot, the clothes you’re wearing, the smell of breakfast cooking. All day, every day. Everything you encounter makes you feel as awful as turtlenecks, bright lights and roller coasters make me feel. Luckily for me, I can avoid those things if I want to (and I do!). But for my little girl, the things that make her feel this way can’t be avoided. And that’s what it’s like to have SPD or at least that’s what I believe what it’s like to have it.
So the next time I lose my patience with her, I think I’m going to lock myself in a brightly lit room wearing a turtleneck, then I’m going to give her a hug and tell her that I love her just the way she is.