As a parent, do you ever have those little moments that just get you? They break your heart, they annoy you, make you insane, make you laugh, and at times they make you sob uncontrollably. Ask the same question to a parent of a child with Sensory Processing Disorder or other sensory issues, and I can guarantee that those moments are personified times 10 with emotions running high seven days a week (That’s right! Some weeks are “forever” moments. Nowhere close to “little.”).
As hard as I try to stay positive in the face of SPD, I find those times when certain circumstances take my breath away. It’s like a kick in the gut. Last week for example…We were invited over for a cookout at our Pastor’s house. For those of you who don’t know B’s greatest sensory challenge is eating. She has only 5 proteins that she’ll eat consistently, one vegetable, a handful of fruits, and about 10 dry/crunchy foods (aka her junk foods). Back to the cookout. There were at least 30+ adults there and 15+kiddos running around. We got there and B refused to go inside without holding onto me. She hid behind me and barely made eye contact or spoke to anyone for the first 20-30 minutes. She played by herself on the swings for a good 10 min and then came inside to get something to eat. That’s when she spoke up. “Mommy, I’m not used to being around so many people.” There it was. Like a balloon that someone let the air out of. I had a moment of, “Damn you SPD!” It was written all over her face. The overwhelming look. The “I can’t process all this stuff coming at me” look.
The eating challenges stare us in the face every, single day. The other aspects/challenges of SPD are a lot more random. Those are the days that throw me for a loop. I had another moment the other day when I was teasing her. She asked if she could have ketchup with her chicken nuggets for dinner (mind you she ALWAYS gets ketchup with her nuggets). With a grin on my face I teasingly said, “I don’t think so!” Her response was so literal. “Why can’t I have ketchup?” I had to explain I was teasing, and she came back with, “I just don’t like teasing. When you say things, even if you’re teasing, I think they’re real and you’re really going to do it.” Another slap on the wrist for mom.
It took an OT explaining that teasing is another one of the sensory/social cues that develop much later for our kiddos before I recognized that we are responding to her all wrong. She understands what the word teasing means and understands that people may say things with a smile when they’re teasing, but her brain simply can’t process it the way it’s supposed to.
She also loses it when her little sister starts to cry. This never used to bother her, but all of a sudden she goes into melt-down mode and cries out, “I’m not going to listen to this! Please stop!” I’m still getting the hang of remembering all of her sensory tools too and of course when her sister starts crying it’s usually when we’re in the car, and the headphones are sitting at home on at dining room chair! Strike two mom.
These are the days when I just want to sit in the corner and cry. I can’t imagine what this unpredictable world is like for her; yet, half the time I don’t have my own house organized. How am I supposed to organize her little sensory world in a way that makes sense? Sensory tools, occupational therapy appointments, food therapy appointments, groceries for the therapy, Integrated Listening therapy, brushing therapy, sensory input over the course of the entire day…the list continues.
I’m open to hearing I’m not alone. I know so many sensory parents have their frustrating moments. I just want to let you know that I hear you. I read your blogs and your personal Facebook posts. I’ve talked to some of you privately. I’ve chatted with a couple of you on the street. We are all kindred spirits for at least we all understand each other. Hugs to each and every SPD parent, caretaker, grandparent, or anyone who deals with the ins/outs of kiddos sensory challenges on a daily basis.