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5 Things I Want to Tell You as a New Parent With Sensory Processing Disorder

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Half a year and a lifetime ago this week, our strong, clever, curious, gorgeous little daughter was born. I was at the time – and I still am – a mom who set out on the journey of parenthood knowing that I was wired differently. I have sensory processing disorder (SPD), a neurological condition that impacts the way my brain makes sense of sensory information. You might say I’m sensitive and quirky, often picky and rigid, and you’re absolutely right. I live with some special challenges. I’m also a wife, a daughter, a sister, and a friend. I’m an award-winning author and I’m an advocate for the SPD adult community. For the past six months, I’ve also been a mom with SPD. Clearly, I refuse to let a neurological difference be the reason I don’t get to follow at least some of my dreams.

That being said, parenting with SPD isn’t for the faint-of-heart. While most of what my husband and I have collectively faced falls within the realm of typical new parent drama (baby won’t poop, baby won’t stop crying, baby keeps teething), my experiences of new motherhood, through a differently wired system, have made for an especially unique six months.

Here’s what I’ve learned.

1. Parenthood is complex. Parenthood with SPD is also complex.

For the most laid-back, unencumbered individual, parenthood is still a complicated proposition. Here, it urges you, this is a brand-new person with your eyes and your partner’s nose. Go and sort out how to keep them not only alive but thriving. They can’t tell you what they want or need yet, and oh yes, you just pushed them out from between your organs, but quickly, go and figure out how to parent them.

And then imagine being the parent whose sensory system sometimes just shuts down from overload. Envision losing the already tenuous connection between your hands, your wrists, your body, and the outside world, and place your child – your heart beating loudly outside of your chest – in those disconnected hands. Try to see, through your eyes that sometimes just don’t process visual information correctly, their tiny chin dimple and the trickle of drool that needs wiping. Try to calmly change a diaper while making soothing vocal intonations as your baby shrieks and your senses overload. Try to swivel your baby carriage down a busy sidewalk with those same challenged eyes and ears and proprioceptive system while keeping your baby safe and upright. Don’t cry at the first stranger who surprises you from behind to complement one of the greatest loves of your life. Some days it’s especially weighty to tote around a growing baby and a lifelong neurological diagnosis.

2. Self-care is critical now more than ever.

Back before our daughter arrived, my self-care routine was extensive. I rested for many hours a day. I soaked in a tub filled with lavender oil daily. I did Yoga Nidra and visualization techniques. I deep-breathed like it was my second job. These moments of self-care enabled me to stay above my intense anxiety (a secondary perk of SPD), and often gave me the calm I needed to face my sensory challenges.

These days, my definition of self-care has changed. Closing my eyes for a half hour has become a precious gift. A deep breath or two before bedtime is now luxurious. I took a shower by candlelight a few weeks ago, and I swear it was like I’d spent the day at a spa. These moments, sadly sometimes few and far between, are pivotal to my well-being as a parent with SPD. It’s like what they tell you during airplane safety protocol presentations: you need to put on your oxygen mask first before helping anyone else. My time is limited, but I never regret carving out a few minutes to
revitalize. The better rested I am, the better I feel, and the more I can fully engage with our girl.

3.We’ll still have meltdowns and shutdowns, and we’ll survive them.

About a month ago, I found myself sprawled out across our bedroom floor, sobbing. I was under-slept and over-extended that day, and between the peek-a-boos, the assisted walking, the nursery rhymes, and the pained, wrenching whimper of a baby mid-teethe, I’d lost my poise. I felt the dark, heavy cry of a meltdown on my emotional horizon, so I handed our daughter to my husband, retreated to the dark, cool calm of our bedroom, and pressed my entire being against the floor as I began to sink into a full, tearful sensory meltdown.

I emerged about a half hour later dazed and frayed, but alive and functional. Our daughter erupted into a wide smile as I walked back into her bedroom, none the wiser of my complete albeit temporary loss of composure. My husband, ever the Handler as we call him (he’s able to handle both me and my sensory needs like an expert), gave me a kiss, and we continued on with our evening. Meltdowns and shutdowns are just part of the SPD package – survivable even after becoming a parent.

4. People with SPD make amazing parents.

People with SPD are often sensitive and intuitive. We care deeply about the human experience because we know all too well how it feels to be misunderstood, uncertain, and anxious about living in the skin we’ve been given. We’re open to differences because we, ourselves, are different. We’re often eager to be supportive, as the support and love from others have helped us get this far in our lives. We live in a world that isn’t built for us, and yet we can be creative enough to find ways to live well within our parameters. We’re some of the strongest people you’ll ever meet. Who wouldn’t want us for parents?

5. People with SPD are deserving of love and family.

I know there’s always an underlying question in the SPD adult community of what do I deserve?  Those of us whose diagnoses were delayed have often wasted many years feeling ashamed and guilty for our differences. In many cases, we’ve felt like burdens to our family and community purely because no one truly understood our needs, not even ourselves. Even after diagnosis, we may still habitually apologize for being who we are. It’s hard, then, to think that we’re worthy of basic human rights, like love… but my friends, we are. We deserve the things we want from our lives. We should stop punishing ourselves for how we’re wired. Our differences can’t keep us from finding our own, unique ways to meet our goals.

I always knew I’d be a mother someday, but as our daughter’s due date grew close, I began worrying that I’d somehow let her down because of my sensory sensitivities.

Listen. I may never be the mom who sews clothing in the theater wings while my daughter sings the lead in a school musical. I may never be the daredevil mom who picks her kids up from classes one day, pops them in the back of the car, and announces, surprise road trip amidst excited squeals. I suspect I’ll be a different mom. I’ll be the mom you confide your innermost secrets to because you know she’s not here to judge. I’ll be the mom who throws cupcake parties and is especially adept at a good movie-watching snuggle. Mostly, I’ll be the mom that is the most herself: open and honest, a fervent champion and cheerleader, a haven of safety in a world that never feels entirely safe to her.

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Originally published: August 3, 2017
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