There’s an area in the General Mitchell Airport in Milwaukee called the Recombobulation Area. There are some days that we could spend all day there – it feels like all we’re doing is recombobulating after this or that…
Sensory challenges aren’t necessarily visible. They can come across as defiance, tantrums or selective hearing. They sometimes require you to leave a public place without notice or pick-up and exit a family gathering abruptly. They can result in frequent misunderstandings, blame, and judgement. Judgement of your parenting, of your discipline and of your child overall. And sometimes, they cause friction in relationships. All of that can lead to the feeling of isolation.
I’ve felt all of these things in recent years. Without a name for some of our difficulties or a realization that Fletcher was having sensory processing issues, we often felt like we were on an island. For years we thought he was just “active” and needed physical outlets for his excessive energy. That was true…but what we didn’t realize is that his “active” body was seeking the sensory input it needed to organize itself. He wasn’t having tantrums during times of transition to be difficult…he was simply communicating that his brain was struggling to reorganize around whatever was coming next.
So after a few years of navigating this stuff without the knowledge of what we were actually “navigating” and feeling isolated, frustrated and defeated…I know a few things to be true…
a. We live in a time where the perfect social media-worthy photo is often what we perceive to be someone’s reality…and often, that couldn’t be farther from the truth. Because we don’t do a great job of talking about things like sensory processing challenges in our children, we miss out on opportunities to support one another. Parenting is difficult to begin with, but you add something like sensory dysregulation to the mix and that increases ten-fold. After talking openly about our journey, I learned that several people in my circle had been dealing with similar challenges. Now I have a network of dear friends who are an absolute lifeline some days – I know they “get it” because they live it. There’s so much comfort in that.
b. There are a lot of folks in the world of healthcare that are not well-versed in sensory processing anything. “Sensory” has become a bit of a buzzword, but that doesn’t mean that a practitioner has experience in effectively supporting families. We’ve had well-meaning people cross our family’s path who would have steered us in the wrong direction had we followed their advice. Learn to be your child’s advocate. Don’t be intimidated by letters behind someone’s name. If you’re not getting the support you need from someone on your child’s care team, push for it or find someone new. I’m empowering you right here.
c. You must Trust. Your. Gut. – not much else needs to be said. This supports item B. Use that parental intuition. If something doesn’t feel right, it probably isn’t.