“Momma, I need you to turn off the air conditioner,” my son said as we drove to his appointment.
“OK, but why?” I asked, thinking about the 95 degree heat that was sure to make us a sweaty mess, in about three minutes, without the air on.
“Because I am eating something crunchy,” he answered, as if I should know. “It gives me weird, yucky feeling goosebumps, and makes me shiver.” He took another, careful bite of the popcorn.
I turned off the air.
The realization of what he was saying hit me all at once. The sensory experience of eating something crunchy, made him feel the way I feel when I am at the dentist, and he is scraping my teeth.
No wonder my son avoids crunchy foods.
No wonder he used to meltdown when he was younger, and just didn’t have the language to explain why.
No wonder I can’t get a flippin’ carrot in this kid.
I fixed my eyes on the freeway so that he wouldn’t see my tears. All this time… I wish I had known.
Sensory processing disorder affects my son, all the time.
It’s here every day, day in and day out, making my son uncomfortable in his own body, and unable to tolerate so many things that I just take for granted.
Temple Grandin, in The Way I See It, speaks candidly about the sensory issues that accompany her autism diagnosis. She speaks candidly about how little research and understanding there is, for something that she considers to be the most significant impairment in her life.
I am with her. It makes me a little panicky and even more so, angry, when I read about the lack of understanding, research, treatment, and care in the medical community, when it comes to SPD.
The one thing that I wish I could alleviate for my son, above anything else that he deals with, is the way his sensory system impacts his overall well-being. It has been so much a part of his daily existence for so long, it’s hard to imagine what his life would even be like without SPD.
This goes waaaaaaay back for him. I am going to venture a guess and say that when he spent hours upon hours, every single day, crying inconsolably at three weeks old, sensory issues may have been a part of it.
He has never known a life where his body isn’t fighting basic aspects of his daily life.
Too cold drinks.
Too warm drinks.
Riding a bike.
Sitting in an upright chair.
Smells, even pleasant ones.
I could go on and on and on.
The good news is? I could go on and on and on. I understand now.
I hate that I didn’t used to. That I thought he just was being stubborn or spoiled. That I would force him to just put the socks on, or eat at the Mexican restaurant that made him gag from the smell, or suffer through the park days, where the sand and noise from the other kids physically hurt. That he would freak out every Saturday when he realized that church was the next day, that it was going to cause him pain, and that I was going to make him go anyway.
I have written about this topic in the past. I will continue to do so. We need to talk about it more.
Because the more we discuss and begin to understand Sensory Processing Disorder, the more we truly begin to know our children. And when we do, we can help them, empathize with them, teach them exercises to help, and love them through what can be incredibly traumatic.
Now that I know, I can help.
Below is video of my son in the doctor’s waiting room. Turn the volume up to get a true understanding of how loud it was for us. In it, he is wearing headphones, but the noise still gets through. This waiting room is at a hospital, so the sterile smell, while clean, was overwhelming to him. The chairs were completely upright, so it was difficult for him to feel comfortable sitting (partially sensory, partially hip pain associated with Lupus). The lighting is standard fluorescent, which makes his head hurt, and actually impairs his vision a bit.
Take a look.
He is rocking back and forth, because it helps him cope.
I am rubbing his back, because I know I can’t help much, but I am hoping and praying he will be able to stay calm.
A year ago, this would’ve been a meltdown. No question.
But on this day, he managed. He got through it. He used everything he has been taught about how to cope and did just that.
And his momma?
By the grace of God, she saw it for what it was. A tough sensory situation, requiring care, understanding, and empathy.
I will never really know what it “feels” like to be in his body and dealing with Sensory Processing Disorder.
But learning everything I can about Sensory Processing Disorder, has changed the way I parent – the battles and pick and the ones I let go.
It has changed our relationship. He trusts me now (he didn’t before – he couldn’t because I wasn’t very trustworthy when it came to his needs). He knows now that I am trying, that I am looking out for him.
It has changed the way I mother my child.