Two years ago, our family was in crisis. Our three-year-old daughter was having daily explosive breakdowns and our one-year-old son was impossible to soothe. My husband and I were being ripped apart by the stress of kids we couldn’t understand, let alone help. Our marriage suffered, as we argued about the best ways to parent our overwhelming children, blaming each other for how out of control our family life felt.
We sought the help of a marriage counselor, who read between the lines of our individual complaints and ultimately pointed out that our daughter’s behaviors did not sound typical. She suggested an evaluation for Sensory Processing Disorder. We were shocked to learn that not only did our daughter have it, but that all of us do. We now had no choice but to try to understand our family dynamic in a whole new way.
We were shocked to learn that not only did our daughter have [Sensory Processing Disorder], but that all of us do.
What is Sensory Processing Disorder (SPD)? Simply put, it means that our brains do not interpret and modulate sensory information the same way that everyone else’s does. One of the beautiful things about the human brain is its ability to modulate incoming sensory stimulation. Too much noise? The brain filters out what’s extraneous. Pungent odors? The brain can acclimate to the smell. For those of us with SPD, our brains do not work that way.
When everyone in your house has SPD, our household can feel pretty volatile. The close proximity forced by our shared household often serves to further aggravate our individual issues. If our SPD all universally affected the same sense–for example, sound–we could manage by, say, maintaining a super quiet home. Instead, we all have a different kind of SPD, which means our daily life can wildly fluctuate in intensity and emotion, depending on what’s going on.
So what does an average day look like for a family with SPD?
I pick up my toddler and my preschooler from daycare just before the sun sets.
I can tell my daughter exhausted from a day of “holding it together” in a class of 20 kids creating sensory pandemonium around her.
Rachel, now five, is the most affected. My preschooler’s disorder impacts all of her commonly known senses and a few of the more unfamiliar ones as well such as balance and proprioception. I scan the brightly lit room for her petite frame and find her set apart from the crowd; she wants to be part of the preschoolers’ playtime, but her SPD won’t let her be, so she stands aside to protect herself. By the deep purple rings have formed beneath her eyes, I can tell she’s exhausted from a day of “holding it together” in a class of 20 kids creating sensory pandemonium around her. She can barely concentrate as she collects her things and follows me out the room.
I head across the hall to get Steven, who is now three. As Rachel and I walk into the daycare room, discordant sound bombards us. Toddlers scream and bang on musical instruments, oblivious to Steven’s sensitivity to sound. His relief, when I rescue him, is palpable. As the door closes behind us, shutting us off from the cacophony, I feel him let out a long breath of relief from where he’s pressed up against me.
School is difficult for kids like them, and I hate seeing them suffer. Yet I’ve made a conscious choice to keep them in school and shielding them away in a less stimulating environment, because I’m afraid it will hamper their ability to function in the real world down the line. After all, in real life, you don’t always have the ability to turn down the volume. But, of course, as parents, my husband and I end up dealing the brunt of our children’s pent-up frustrations from school, and try to balance the meltdowns and tears against our own SPD as best we can.
When we arrive home, the house is quiet. The lights have been dimmed. Some friends remark on how peaceful our house can be, not really understanding that it’s done out of necessity. To my husband, the chaos and the noise that comes from having kids is almost unbearable. Even the joyful screams of our children running through the house can leave him wincing in pain. Oversensitive to bright lights, he will walk around turning them off until he can finally relax. He has installed dimmer switches on the lights we use the most. I often have to argue with him about whether or not I can turn the kitchen lights up bright enough to see as I cook.
Sometimes even the most playful touches of my children feel like a violation of my physical space.
And the baby? At just 3 months, it’s hard to tell where he will fall on the spectrum of SPD, if at all. But the signs are beginning to show, in his strong reaction to bright lights or touch, or even the fact that his light sleep is disrupted by every little sound. Then again, the phrase “sleeping like a baby” has never applied to any of our children.
Sometimes, the burden of it all as a caretaker seems almost too much to deal with. I have to manage my own SPD, all while helping everyone else to manage their own. Sometimes even the most playful touches of my children feel like a violation of my physical space. I used to think I could just muscle through when my nerves were stretched to their outer limits, but now I force myself to take breaks or walk away when I cannot control my own reactions. Sometimes I wish I could be a better person for my children, but I am learning to forgive myself and use my guilt as motivation to work harder.
Some days I feel like a superhero. I can effortlessly steer our family ship around tantrums and hurt feelings, pulling the drawstrings of our family tighter. Other days I feel like a failure as a mom, unable to muster enough energy to proactively manage everyone’s issues.
Two years into this journey, I’m amazed by how far we’ve come
But what keeps me going is that even on the bad days, I can see that our family’s trajectory over time has improved. We’re getting a handle on our collective SPD, slowly but surely. Two years into this journey, I’m amazed by how far we’ve come
On the days when we are fatigued by constant overstimulation, we struggle as a family. Those are the days where we need space and time apart until our sensory systems can recover. But with those struggles comes a deeper understanding of who we are as individuals. We have our own individual triggers, and have been forced to explore a greater empathy within ourselves to make it work as a family.
Even though each person struggles with different senses, it’s easy to relate to how the experience makes each person feel. Everything we experience, we experience in a big way. So as each of us goes out into the world and interacts with other people, at the end of the day we return to our family, our safe haven. With the people who understand us the best.
Creative Commons image at top by Matthew Prosser.