Sometimes, this is what it looks like. Yes, adorable.
Sensory Processing Disorder is still one of those diagnoses that is little known and largely misunderstood. People sometimes assume it's another way of saying autism (it isn't). People think it's a made up disorder, born of a generation of neurotic helicopter parents always looking for a problem (it isn't). People find it hard to believe that such a sweet, normal-looking kid like Stella has it (she does).
I've spoken before about how we came to this diagnosis with Stella, how it exhibited itself when she was a baby (although we didn't know that's what it was) and as a toddler, when her wonderful preschool teachers alerted us to it. But I haven't talked much about what it looks like now that she's an almost 6-year-old.
Honestly, I sometimes don't know the difference between regular kindergarten behavior and signs of SPD. I'm used to teaching older kids and am all-too-familiar with their adolescent quirks. But with the help of parents of similar-aged kids and Stella's teachers, I've been able to identify which behaviors stand out. Here's a random sampling:
- Needing food to be ice cold before she'll eat it
- Taking a very long time to eat a meal - sometimes over an hour
- Making a huge mess while eating
- Refusing to eat a lot of foods because they're too spicy, including many spaghetti/pizza sauces
- Taking a bath only in very cold water (even on frigid winter days)
- She's finally - just recently - able to dress herself, but she still can't snap the snap on her pants because it hurts her fingers.
- Not being able to buckle her own seat belt
- Stopping in the doorway of any place she enters, refusing to budge, especially if it's new, even if I'm right behind her carrying 4,000 heavy bags
- Hating any place that's loud (like the sing-along I tried to take us to today to escape the house on my 15th snow day)
- Throwing scary fits, screaming and flailing, refusing for sometimes over an hour to calm down, over the slightest change in routine (examples: the time she couldn't use the glue she wanted to at Girl Scouts and the time her after school program replaced the markers with different ones)
- Wanting to repeat pleasurable experiences, like eating the same exact food day in and day out, wanting to watch the same episode of the same show, wanting me to tell her the exact same bedtime story, etc.
- Getting hyper-active in certain situations, especially when there's a lot going on - singing a song over and over, hopping on and off couches, etc.
- Not being able to play by herself - at all, really. Sometimes we get five minutes here and there, but she craves human interaction. (Yes, I'm taking frequent breaks from blogging to play with her right now. In fact, she's leaning over my shoulder, sucking on a squeezable apple sauce, finding sight words in my entry. And yelling each one loudly in my ear.)
- Not being able to make friends - she doesn't like how she can't control their play, doesn't like the spontaneous touching and loud noises, doesn't like it when she finds herself in a group of more than three
- Having issues with voice volume - yelling like a banshee when it's just the two of us in the bathroom (her brother sleeping just feet away), whispering while in the backseat of the car over the sounds of the engine, other cars, and her brother crying
- Not being able to handle strong smells - like her brother's poop, vinegar, or the way I smelled while pregnant ("Mommy, I love you, but you smell funny.")
- Losing her mind when the sun gets in her eyes (this can even cause her to cry)
- Getting so easily distracted by any sight, sound, or smell imaginable. Sometimes it can take forever just to get from the house to the car, because we heard a bird, saw a squirrel, and smell dog poop.
- Needing a white noise and a dark room in order to sleep
I wish I were the kind of mother who knew that this is not any of Stella's fault, and therefore maintained my patience 100% of the time. But I'm not. I'm flawed and riddled with issues, and sometimes (like this morning), I just lose it a little. I just find it to be a little too much for me. Which is pretty darn hypocritical, considering I'm pretty sure I've always had a mild version of it myself.
Stella sees an occupational therapist one time per week and we're seeing some improvement. But I worry about her - mostly when it comes to making friends and succeeding in school. And I worry about us, because I don't like how I can get annoyed with these quirks, I don't like how they can sometimes come between what is otherwise a lovely, amazing bond between us. I'm working on my empathy, I'm working on acceptance, and most of the time I think I'm doing OK. But some days, as politically incorrect and generally crappy as this is, I just find myself thinking, "Why can't you just be normal?" And that, my friends, is completely my problem. Not Stella's.